Misdiagnosis of ALS as lyme disease - ALS Research & Treatments

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Posted by: Mike West Monroe - Monday, March 13, 2006 6:48:05 PM

Every day, people with ALS are being taken advantage by unscrupulous or incompetent practitioners of all kinds. People need hope to go on living but usually the ones who are selling that hope are just frauds.

Sadly, Dr. Gregory Bach of Colmar, PA, although a licensed osteopath, is offering this kind of false hope to ALS Patients. His pattern is to say that what other doctors tell you is ALS is really lyme disease. He uses a lab in California, IGeneX, which has been investigated several times and which seems to always come up with a positive for lyme disease. When you get this IGeneX report, you feel you have hope again and Dr. Bach insists you come every 3 weeks (at $600 a visit) while he prescribes all kinds of antibiotics.

As you take these huge doses of antibiotics over a long period, you get sicker and sicker. Bach tells you, “you’ll get sicker before you get better.” So you continue to hope. “Stay away from other doctors,” he says. “Dont take rilutek,” he tells you. “That stuff will kill you.”

Then, when you are so disabled that you are an embarrassment in his waiting room, he has his lawyer send you a threatening letter telling you to stay away or face legal charges. This happens repeatedly but ALS patients are so depressed and weak by then that they, and their caregivers, don't fight back and expose him.

Does Bach do it just for the money or does he have a messiah complex? I don’t know. Maybe he can’t bear to admit that his antibiotics don’t cure ALS, so to save his own pride, he dumps you. Either way, he refuses to consult with other doctors or send you to someone who can help you. He doesn’t even give you a personal call. The nasty letter from his lawyer is all you get.

Bach claims that he is treating “hundreds of ALS patients.” He says, “I haven’t lost one of them.” That’s because he dumps them first. If he tells you about Tom Coffey or Dr. David Martz, who are ALS patients he claims to have cured, demand to meet them. I asked and was given a runaround, and I doubt if these two even exist. Seriously, if this Dr. Bach could cure ALS, wouldn’t he want the world to know?

Bach works in tandem with a Dr. Richard Rhee in Neptune NJ, who justifies the lyme diagnosis. Dr. Rhee is a neurologist and clearly knows that lyme has no connection to ALS. Bach is also connected with ILADS, a bogus lyme disease group that produces glossy promotional brochures, full of cheery anecdotes and no real facts, to fool desperate patients.

The last I heard, Dr. Bach is planning to use all the money he’s making to build a big “research center” – with him as the only researcher, I suppose.

I am looking for folks who will share their experiences with this Doctor, either by posting them or emailing me, so more people with ALS won’t be hurt.

Please email me mikewestmonroe@yahoo.com

Thanks,

Mike West Monroe

Posted by: Malipu - Monday, March 13, 2006 10:54:09 PM

Hello,
To continue - Dr. Martz himself, is now a Lyme Literate Doctor (Llmd). His patients also post on the Lyme/ALS forums and he is portrayed as a compassionate man. He is one of the 3 highly publicised patients of Dr. Bach. People on the Lyme forum have discusssed Bach. I myself called his office and was immediately turned off by the extreme rudeness of the woman, whom I spoke with. A couple, who had several visits with Dr. Bach, wrote a pretty revealing post about their experience with him, in an effort to warn others. And, true also, many praise him for helping them. I know that I would never go to him or send a friend there.

Now, about IgeneX: I disagree that all their tests are positive. Many, many people on the Lyme forum complain that they tested negative by IgeneX, and can not get a treatment. The fact that they have been investigated - well, sure - if they have cut into the lab market, it's a sinch to get investigated.

Lyme is a serious and prevalent occurence. In Eastern Europe, it has become a dreaded epidemic-like threat, and perhaps, due to a stronger strain of the bacteria, people are dying from it, some quite rapidly. Massive spraying of parks, farms, school grounds, etc. is taking place and the word is out on the sickness. Sadly, here we only discuss it on the forums.

As to the ALS/Lyme connection? Well, I will have to get back to you on that. Our battle with both is ongoing.

Upila

Posted by: ladave - Tuesday, March 14, 2006 3:41:58 AM

I cannot comment directly about either the lab or doctor in question, however the whole Lyme/ALS connection is a vexing one. I checked into Lyme after my EMG led to my initial "probable ALS" diagnosis and the symptoms did not seem to match. When my neuro told me I had tested negative for Lyme I figured that was that. Well, not so fast. I requested a copy of my labs and the initial B. Burgador AB Scan came out at 0.7 out of 1.0. Under the current methodology, anything under 1.0 is considered a "negative", a "blot" is only done if the test is 1.0 or higher. Well, fair enough; still, 0.7 out of 1.0? That's not exactly 0. What leads to an 0.7 reading rather than an 0.0 reading if I'm truly negative? I'm going to ask some follow-up questions about this, you can bet.

Dave

Posted by: jmccarty - Tuesday, March 14, 2006 9:44:45 AM

Dave,
There are a number of reasons that you might have what appears to be a partial response on such a test. Many of the diagnostic tests are based on monitoring of antibodies present in the body – an indication that the body is reacting to infection or disease state. The level and type of these antibodies (for example – IgG or IgM) may vary as a function of time from infection. Most importantly, however, is the clear and real complication from cross-reactivity. This arises when the test is not specific enough and antibodies other than those specific to the disease or infection state are detected. This is presumably why they have set a threshold value – above which there is sufficient response to warrant a confirming test. It would be a concern for any diagnostic and it seems to be a particular problem in the detection and monitoring of Lyme disease.

I would caution about relying on commercial diagnostics that are coming from outside the accepted norm. I have significant personal experience in medical diagnostics development in a biotechnology setting and am very aware and sensitive to the difficulties in designing tests and in particular - running tests. It is not necessarily a question of whether a particular test is always resulting in a ‘positive’. Even a lesser percentage of ‘false positives’ can be very undesirable. I think people would be surprised at the level of (non)-accuracy that is considered acceptable - including products with CLIA approval – in the diagnostics market. As an exercise, if anyone has access to the ‘fine print’ associated with some diagnostic product – the slip of paper in the package - such statistics are usually given there. For example, folks might have ready access to a pregnancy test – however, this type of test due to its design (a ‘sandwich assay’ – see the Wikipedia entry for ELISA) probably has significantly lower accuracy issues than others which measure antibodies directly.

Almost every drug can be considered essentially as a toxin. (To be clear: drugs can also be found as mixtures of compounds or unpurified as in some particularly active natural herbal treatments – the toxicity is not an issue of source!) The value from the drug is in dosing at a level where the benefit outweighs the harm. In cases such as cancer, most people are aware that the side effects from chemo can be pretty devastating in the hope of extending a life. Antibiotics such as used to treat Lyme can have significant side effects as well – for example - neuropathies which PALS would in particular wish to avoid. An example of such undesirable side effects in regards ALS is recounted in a recent thread that started on a different subject: http://www.als.net/forum/topic.asp?TOPIC_ID=505 . Therefore, use of antibiotics in the off chance that Lyme is present would seem very capricious.

The potential for confusing ALS and Lyme diagnostically has been well discussed in several recent threads.
See http://www.als.net/forum/topic.asp?TOPIC_ID=438
and http://www.als.net/forum/topic.asp?TOPIC_ID=432
In particular, I believe that HarryAZ has a well thought out argument on why there is cannot be a significant level of cross- or mis- diagnosis.
See http://www.als.net/forum/topic.asp?TOPIC_ID=476
Finally, I would urge, as I have in other threads, that any significant concern on possible Lyme infection be addressed to an MD with broad infectious disease experience and not someone claiming to simply have Lyme literacy. There is significant value in letting the diagnosis itself lead to the disease conclusion, not vice versa.

Relevant Wikipedia entries:

http://en.wikipedia.org/wiki/Antibody

http://en.wikipedia.org/wiki/Western_blot

http://en.wikipedia.org/wiki/False_positive

http://en.wikipedia.org/wiki/ELISA

http://en.wikipedia.org/wiki/Clinical_Laboratory_Improvement_Amendments

John McCarty, PhD
Treatment Investigator,
ALS Therapy Development Foundation

Posted by: ladave - Tuesday, March 14, 2006 1:46:41 PM

Thanks, Dr. McCarty. I'm not about to run off to one of the "lyme hacks". I simply plan to ask my neurologist if he thinks this is worth a referral to a lyme specialist within the mainstream medical community, particularly since I believe USC (where I'm being seen) has such people. As I said, my own lay review of symptoms does not seem to be a match for lyme, but nevertheless I do feel the need to follow-up.

Posted by: nhhawkeye - Tuesday, March 14, 2006 6:54:27 PM

Dave, I agree with Dr. McCarty on this one! :>) I tested postive on one test, negative on two others and undetermined on yet a fourth. If anyone in this country has lyme probably the best site I've run across for treatment is neuraltherapy.com. Smart guy that Klinghardt. I went to a top guy at Dartmouth and found that I easily knew more about lyme than he did! This is not good as I'm not the brightest bulb in the box. It took 4 years of signs, symptoms and test results to be convinced that I was a PALS. Good luck, Mark

Posted by: Mike West Monroe - Thursday, March 16, 2006 7:28:22 PM

Following my initial posting, I heard from caregivers who were convinced of an ALS-Lyme connection due to web postings and brochures produced by a group known as The International Lyme and Associated Disease Society (ILADS) This is not a serious medical organization but is simply a promotional group. For example, they have issued a widely circulated “press release” about a Dr. Dave Martz who was supposedly cured of ALS by Dr. Gregory Bach of Colmar, PA.

Dr. Bach, however, is a director of ILADS, so the press release featuring his “cure” of Dr. Martz is suspicious. Moreover, Dr. Martz cannot nbe found and may well be very ill or dead by now.

In fact, ILADS typically publishes “Press Releases” featuring its own directors. The supposedly scientific presentations at the ILADS conferences are also from within its own small circle of doctors.

Dr. Bach, in my experience, gives out copies of the glossy ILADS brochures to patients to provide the appearance of legitimacy to his activities. Perhaps, the other “directors” do the same.

The lyme diagnoses that Dr. Bach and others in the ILADS group uses comes only from a single lab in California, IgeneX. The founder of this lab, Nick S. Harris, is also on the board of ILADS. Pretty cozy arrangement, huh? (This lab has been investigated more than once in California)

The lawyer whom Dr. Bach uses to threaten and dump very sick ALS patients, when they are no longer of value or interest to him, is Michael Schoppmann, who has boasted to the press of defending “lyme MDs” when they face prosecution for various forms of medical fraud. Dr. bach had his lawyer send this kind of letter to the football player Steve Smith in order to dump him as a pateint. Yet Bach still features pictures of Mr. Smith in his office as one of his miracle cures!

So, I’d say this entire “Lyme/ALS” network seems to be a small and insidious one, organized to take advantage of vulnerable patients. People with ALS and their caregivers should be very wary of any practitioner associated with ILADS.

I know that we all hope for miracle cures but, sadly, if something sounds too good to be true, it often is. And even more sadly, there are people who make it a business of giving PALS false hope just to make money off them, or to make themselves seem like miracle-workers.

Mike

Mike West Monroe

Posted by: Mike West Monroe - Monday, March 20, 2006 2:18:28 PM

I want to correct above information. I did manage to contact Dr. Martz. He was not a patient of Dr. Bach's and his only knowledge was from an article on Bach's treatment of Tom Coffey that a friend sent to him. He reports he is back to 80-85% functioning, after treatment by another doctor. Dr. Martz did send me a description of his treatment, which I will forward to anyone who emails.

However, I am still very troubled by ILADS and Dr. Bach in particular in their attempts to claim credit for treating someone whom Dr. Bach never even met. This kind of false marketing is not appropriate for a physician nor an organization claiming to represent physicians.

The mysterious Tom Coffey, yet to be found, seems to be the only ALS cure effected by Dr. Bach. And I have yet to speak with anyone who has even met this Tom Coffey!

Mike
mikewestmonroe@yahoo.com

Mike West Monroe

Posted by: Paul - Tuesday, March 21, 2006 2:08:10 PM

I know Dr. Martz. He is indeed a compassionate man who sincerely believes he can help PALS. He's a bright guy, too, which complicates the whole situation, as I doubt he ever had ALS but was one of the few to have Lyme which mimicked SOME symptoms of ALS. I say some, but enough to convince a well-educated, seasoned oncologist (himself) that he had ALS. Incidently, all his "conventional" Lyme tests were negative and only one of his IGeneX tests was positive...without that positive test, he never would have undergone the antibiotic therapy and recovered.

Posted by: mizzlizz - Tuesday, March 21, 2006 4:52:22 PM

Hi again Mike and others--

Although I already emailed Mike some time ago, I should weigh in here because my father was examined by both Drs. Bach and Rhee. I wasn't aware that they worked in tandem. If true, that would explain Dr. Rhee's puzzling behavior as well.

In retrospect, I think Dr. Bach treated my father exactly as Mike portrays. Dad was examined, and was then sent the same harsh letter from the lawyer. I found Dr. Bach's office to be very, very strange and unfriendly--somber, unsmiling nurses, mirrored glass sealing off the waiting area, locked waiting room doors, and worse, I wasn't allowed to go into the exam room with my father, no matter how much I argued with the nurse. When I was finally allowed to talk to Dr. Bach, I was placed in a tiny standing room only space and had to talk over low wall--it was truly bizarre. And he is a very wierd person. His office has a big picture of Tom DeLay in it--I should have been really worried then!

Last year I was in correspondance (through HealthBoards) with a fellow named Jon Davis, a hunter from Ohio who was diagnosed with ALS and Lyme and was treated by Dr. Bach. I asked him about Tom Coffey and he said that he had met Tom in Dr. Bach's waiting room in April of 2004, and that Steve Smith, the retired football player, was there at the same time.

You can read all about Jon at http://www.buckmasters.com/buckmasters_links/Features/040122Die.html

At least we know HE is a real person[:)]

Bottom line--follow Dr. MaCarty's sane advice on this topic and see an infectious disease doctor. What I like about them is that they have more of a "whole body system" approach. You get interviewed thoroughly about anything and everything you may have been exposed to. They're not necessarily biased for or against a Lyme disease diagnosis or an ALS diagnosis. The neurologists we've dealt refuse to believe that any disease could cause Dad's ALS symptoms; the so-called "Lyme literate" docs are overly zealous in favor of Lyme.

Liz

Posted by: Meg1 - Tuesday, March 21, 2006 5:32:32 PM

Jon Davis's article is almost two years old and he doesn't mention any improvement. Does anyone know how he is doing now?

The thing that always strikes me about these "it's not ALS--it's really Lyme!" stories is that when the ALS has been reliably diagnosed, the lyme sufferer never really improves.

As I understand it, although Dr. Martz thought he had ALS, his symptoms were never consistent with ALS (very sudden onset, for one thing), and he was never actually diagnosed by anyone qualified to make the diagnosis.

Posted by: ladave - Tuesday, March 21, 2006 5:44:45 PM

Quote:

quote:Originally posted by mizzlizz
And he is a very wierd person. His office has a big picture of Tom DeLay in it--I should have been really worried then!

Liz

Did you ask if he thought Terry Schiavo was actually a Lyme sufferer?[:)]

Posted by: Mike West Monroe - Wednesday, June 21, 2006 5:21:47 PM

I continue to receive e-mails from people who have concerns about Dr. Gregory Bach. Most do not want to be public about their experiences, due to fear of Bach’s lawyer harassing them or out of concern to preserve the privacy of PALS, and I will respect their wishes not to be public. But please keep writing and perhaps we can get the word out about this “doctor.”

The experience eof many PALS and caregivers is similar to ours:

People with either an ALS diagnosis or a probable diagnosis seek him out and he tells them that he is certain that they have lyme disease and that he can cure them if only they come back every three weeks (at $600 plus) a visit for an array of antibiotic pills and shots. Even if no reputable test shows lyme disease, he sends blood for testing to I-Gene X labs in California, which consistently shows lyme disease. He tells them about his one “success” story, the mysterious Tom Coffey, who some have actually seen in the office.

Bach shows patients glossy publications from ILADS, a promotional group on whose board he serves. As far as I can see, this group exists simply to promote itself. If you read the ILADS publications, you will find anecdotes but no real evidence of any cures of ALS.

As months go by, the ALS patients inevitably grow worse and Bach tells them, “You will get worse before you get better.” He rails against medical insurance companies, which will not pay for his “advanced treatments” so patients tap their savings or go into debt.

When the patient and family finally begin to complain and seriously question why there is no improvement, he has his lawyer send a nasty letter cutting them off and threatening unspecified legal charges if they ever attempt to contact him again. He never calls the patient to express concern or make any recommendations at this point.

Bach minimizes the chance to make complaints by refusing to let caregivers join PALS in the exam room, and only grudgingly gives a quick report over a barrier in his office.

Another feature of his practice is to make PALS wait for up to six hours in his waiting room, without contact with a receptionist or nurse, who remain behind a one-way mirror. The majority of his patients may well have lyme disease, and some may just be hypochondriacs, but there are usually at least a couple people with either ALS or MS, often in wheelchairs. By overbooking patients, he creates the appearance of being in demand.

From time to time he tells the spouse or other caregiver, “ If you do not believe he will get better, he(or she) will die.” Bach has no problem playing on the caregiver’s love and sense of guilt, no matter what the cost of such an offhand comment may be to the caregiver in the future. Or he tells stories of patients who lost faith in him and then died.

The question is: why do people with ALS and caregivers continue to fall for this? I think that all of us on the website understand the desperation of patients as they come to terms with this horrible disease. I think all of us also understand the grief and terror of caregivers who are desperate to do all that they can. This is what Bach preys on.

Another question is: Why hasn’t he been stopped? The most obvious answer is that ALS is so exhausting to families that they cannot summon the energy to do battle with him. Also, with the money he makes off patients, he can hire lawyers to drag out any suits past the lifespan of the patient. In addition, it is not easy to make headway with authorities in Pennsylvania, at least in our family’s experience. The county medical society offered to “counsel” him, as if that would help! And the Penn. State board that covers professional licensing also deals with such trades as LPNs and beauticians. One serious physician told us to look into a federal complaint to take away Bach’s DEA number so that he could not write prescriptions, but the doctor had no specific guidance on how to do this.

Another issue became central for our family, as we began to see through Bach’s game, and this may be similar to the experience of other families. We felt that, “At least he give us hope. What is the harm in that?” Well, the harm Bach does is not just financial, altho that can add up. He also prevents PALS from accepting what is happening to them and getting the most they can out of the few months they have. Our patient kept running to Bach, spent his life savings, and now regrets wasting those valuable months when he could walk and drive. He feels that he might feel better now if he had gotten reputable help early on. Now, he is here, a few feet from me, unable to move his hands or his legs, and with his speech becoming harder and harder to understand.. In addition, Bach told him not to take riulutek which might have given him a few more previous months with his loved ones.

If anyone has any suggestions for how to better publicize Dr. Bach’s methods, or who has suggestions as to how an effective complaint or series of complaints could be made against him, please email me at mikewestmonroe@yahoo.com

Mike

Mike West Monroe

Posted by: Questioner - Wednesday, June 21, 2006 7:27:35 PM

Some of the problems raised in this thread (and which crop up repeatedly) could be helped by my suggestion for a certification process for claims of ALS improvement and treatments (see post under Ambrotose thread). For example, if some of the people mentioned in this thread wished to claim they 1) truly had been diagnosed with ALS and 2) improved and 3) improved due to the treatment for Lyme, they could apply for certification. If they cannot or will not provide the requisite documentation or otherwise meet the specified criteria (to be established), they wouldn't get the certification, which could be noted in a database, accessible on the internet, so anyone who wished could see that they failed to obtain the ALS community's certification of authenticity. This could apply to PALs making such claims or anyone making such claims on their behalf, like the doctors mentioned in this thread.

Posted by: mizzlizz - Thursday, June 22, 2006 8:53:07 AM

Hi everyone--

I was just thinking that this certification idea is a task that an already-established organization like ALSA could take on. I wonder what it would take to propose it to ALSA, and then get such an initiative funded. I know nothing of these procedures--but perhaps some of you might?

Mike--it was good to hear from you. Thank you for your heartfelt posting, for sharing with us all the information you've collected, and the scenario of your own loved one. I am so sorry about your family member. It is wonderful that you can be with him; I'm sure your presence is comforting.

Of course I can empathize. Bach saw my father just once as I detailed in my earlier post; what I should have added is that, during that one visit, Dad told him that he was Surgeon General C. Everett Koop's speechwriter for eight years during the Reagan years. I think that little fact scared Bach and shortly after that Dad received the package from Bach's lawyer.

Meg--I did hear more about Jon, one of Bach's patients, through HealthBoards. He has been very sick and was hospitalized. In fact, he has deteriorated so much that he could no longer type, so his son typed for him; however, since removing his Mediport and getting a feeding tube, he seemed to be doing better. He made no mention of Bach. Here's a link:

http://www.healthboards.com/boards/showthread.php?t=396323

HealthBoards actually deleted another of his recent posts where he explained that he felt his downward spiral was due to antibiotics. If you go to Healthboards, you'll see two May 30th threads by "Wackowoman" and "Battling On" that were deleted, one of which was offering good wishes for Jon's recovery. HealthBoards is very heavily moderated.

Liz

Posted by: Questioner - Thursday, June 22, 2006 1:36:33 PM

Liz,

It also recently occurred to me (I've had this idea for some time) that perhaps an existing organization could take it on, though I think need to flush out and articulate the idea more than I have done first, as well as having others provide input. Established organizations like MDA or ALS Assoc. may not want to take this on because, from their perspective, any of these "alternative" treatments (with perhaps a few exceptions, like Vit. E) have already been determined to be entirely ineffective, so they may not wish to put time and resources into this.

Here's a quick example of how this certification could benefit present and future PALS and CALS: Let's say there is a doctor or health practitioner who has been making claims that they have a treatment which is effective for ALS. Someone, say, like Dr. Kane or Dr. Edelstein or maybe even Dr. Perlmutter (read a claim in a book of his that DHEA alone restored function in at least one PAL). They could be encouraged to obtain the certification for their claimed results. If they can meet the criteria and do so, great; maybe they are onto something. If, however, they won't or can't get the certification or try but fail to get it, this fact could then be widely publicized, by ALS organizations, internet forums like this one, etc. Then if a PAL or CAL does contact this practitioner, they could ask if they have certification (and evidence of it) and if told they do not have it, might ask why not, if they are making such claims or encourage or demand that they obtain certification or cease and desist making such claims. This could even become a basis for possible civil or even criminal legal actions. In any case, failure to obtain certification could quickly put an end to the need for anyone to needing to even bother checking out getting their treatment and possibly wasting a lot of time, emotion and money. Maybe the government (state or Federal) could be involved in certification in some way, but might be better if the impetus and the criteria and certification process come from the ALS community. If someone legitimately has a truly effective treatment there should be no reason not to apply for and get certification, nor any reason not to want to do so. Of course, out of fairness, a a practitioner should be able to appeal a decision not to certify or to present additional evidence.

Any PAL or anyone on their behalf making a public claim (such as on an internet forum) of significant improvement, remission, reversal or cure should also be willing - indeed, want to, if it's legitimate - to "certify" such a claim. Of course, the certification criteria and process might be different than for a practitoner; perhaps less formal and burdensome. Moreover, the possible legal implications of failure to achieve certification would be very different or not apply at all in the case of the individual PAL or CAL.

It occurs that another kind of organization that might be able to help with something like this could be one of the groups that monitor fraudulent health claims or a health advocacy group, like the Nader organization (can't recall their name, but somemthing like Center for Health policy). In fact, in theory, the idea of certification could actually apply to any other disease or even any sort of health claim. The process of obtaining FDA approval for drugs is in effect a form of certification. Of course, for the purposes we are talking about the certification process would have to be far less burdensome, expensive and time consuming than the drug approval process! nnn

Posted by: Mike West Monroe - Thursday, July 20, 2006 6:40:40 PM

I’ve been thinking about Questioner’s very reasonable suggestion that doctors who claim to have found successful treatments for ALS be offered a protocol for certification of their treatments. I exchanged emails with Dr. McCarty on this, but in the end, I think that this would not address the problem of doctors who are making false claims. First of all, we are presuming that they are operating in good faith, but many such practitioners are simply frauds, and know it themselves. My belief is that Dr. Bach is such a practitioner.
The test that ALS patients, and their families, ought to apply to such claims is a simpler one. If you find a doctor who will not concede that he has ever made a mistake, you are not working with a person whose work is grounded in science. As Professor Dennett of Tufts University has said, “Science is not simply a matter of making mistakes, but of making them in public.” Science-based professionals share their work, debate vigorously, and learn from their own and others’ mistakes. Professional journals exist to share such conflicting ideas and forms of treatment, and medical progress goes forward.
Dr. Bach did nothing but brag about his successes and, as recently as last month, was featured in a Maryland paper making the same outrageous claims.
My own science education ended with high school, but I think all of us need to encourage people about whom we care to read and study the scientific basis of medicine, as far as we are able. Dr. Bach and his kind encourage patients to distrust the “medical establishment” and encourage a paranoid feeling in PALS. As I mentioned earlier, Dr. Bach told our patient not to take Rilutek, saying “That stuff will kill you.” We now know that Rilutek might have given him a higher quality of life right now, as he struggles to even make himself understood in the most basic ways. In addition, the enormous doses of antibiotics, prescribed by Dr. Bach, may well have exacerbated the severe intestinal problems from which he now suffers so much.
Dramatic progress has been made recently, at Johns Hopkins and Mass General, and scientists are close to understanding how neuron death occurs in ALS, if not why. Within the next few decades, I would predict that treatments will be found for ALS. Even if they come too late for many, there is hope and there is, above all, a reason to participate in clinical trials at places of the quality of Johns Hopkins. We did not do this, to our regret, since such trials might have helped others who will be stricken with this horrible disease.

Mike West Monroe

Posted by: Jeff Schaffer - Monday, July 24, 2006 1:46:57 PM

DR.MCCARTY.. Now that was a personal attack if I ever seen one !!.. But I do agree with her about lyme being real.. And the getting worse before better.. Its the truth.. Ron

Posted by: tse - Monday, July 24, 2006 2:32:12 PM

mike monroe tells of pals who DR says have lyme when they don't, susan evans tells of people who Dr saya have lyme who have lyme, different cases, not apples to apples, not defense for fraud of pals

Posted by: Jeff Schaffer - Monday, July 24, 2006 3:17:23 PM

Same Dr. though.. Whats your point? Either he is a fraud or not..Ron

Posted by: Meg1 - Monday, July 24, 2006 6:58:14 PM

I've got a friend on another ALS board who has drunk the Dr. Bach kool-aid (diagnosed at an ALS center but is still waiting for Bach to hit on the right drug combination to treat his particular form of lyme disease). Symptoms march on. Here are some patient ratings for Dr. Bach:

http://www.ratemds.com/ShowRatings.jsp?did=4818

Posted by: skode - Thursday, July 27, 2006 2:44:40 PM

Susan
I don’t doubt that Dr.Martz is helping you and others with lyme’s disease, but there is no record or evidence available that states that he or any other lyme doctor has made any progress with someone diagnosed as definite ALS as confirmed by an ALS specialist. Getting a second opinion on the diagnosis of a serious and ultimately life-threatening disease like ALS can be critical. Since there is no definitive test for ALS and the symptoms can mimic many other medical conditions, making the diagnosis of ALS can be difficult. Often it is only after the symptoms have progressed and the patient shows conclusive signs and symptoms of the disease that a physician can reach a diagnosis of "definite" ALS. Some neurologists estimate that as many as 15% of the people diagnosed with ALS have been incorrectly diagnosed.

Please correct me if I’m wrong, or better yet, maybe you could have Dr.Martz correct me if I’m wrong about the following facts: Dr.Martz’s initial diagnosis was a motor-neuron disease of unknown cause, possibly ALS; he was never officially diagnosed with definite ALS. He did not pursue a second opinion from an ALS specialist. As he progressed, Dr.Martz’s symptoms were never consistent with ALS (muscle weakness without muscle atrophy). Lyme disease was considered, but blood samples sent to the Mayo Clinic were negative for Borrelia burgdorferi, the corkscrew-shaped bacterium that causes Lyme. One doctor put him on a month of antibiotics as a treatment for Lyme anyway, but it didn’t help. The newspaper article David Martz received offered a sliver of hope. It quoted a Lyme specialist saying the usual tests are inaccurate; more sensitive testing is required. Martz turned to a laboratory known for that specialized testing, IGeneX Inc., in Palo Alto, Calif. A conventional antibody test came back negative. But IGeneX also did a urine test, using a method questioned by federal health agencies in a warning last year against testing that hasn’t been validated. It was positive. Martz became a patient of Dr. William Harvey, a Lyme specialist in Texas. He began intravenous antibiotic therapy in January 2004. The rest is history…..

Martz has seen about 350 patients in the first year: roughly 70 with neurological, ALS like illnesses, the rest with problems such as fibromyalgia or chronic fatigue syndrome. And all are seeking answers.

“The average person has seen 24 previous doctors, and they’ve been told that they have maybe lupus, but it doesn’t fit, maybe MS, but it doesn’t fit, maybe psychiatric problems,” he said.

About 80 percent test positive for the Lyme bacterium using IGeneX testing and are given the option of long-term antibiotic therapy, Martz said. Those who test negative but still fit “the classical clinical picture” also are offered the therapy, and many improve, Martz said.

“That just shows that the testing is not adequate yet.”

The therapy is not a cure-all, Martz stressed. And, at $2,000 to $3,000 a month, it isn’t likely to be covered by insurance, because insurance companies don’t commonly recognize chronic Lyme disease.

“You need to go into it understanding that it may not have any benefit at all,” Martz said. “But if you wish to try it, we’re willing to help you.”
http://www.canlyme.com/gazette_martz_2006.html

Pat McClellan

Limb onset 5/02, Dx 2/03, W/C 4/04, Bipap 11/04, Peg 10/05, Hospice 1/06

Posted by: Questioner - Thursday, July 27, 2006 7:53:48 PM

Quote:

quote:Originally posted by Mike West Monroe
I’ve been thinking about Questioner’s very reasonable suggestion that doctors who claim to have found successful treatments for ALS be offered a protocol for certification of their treatments. I exchanged emails with Dr. McCarty on this, but in the end, I think that this would not address the problem of doctors who are making false claims. First of all, we are presuming that they are operating in good faith, but many such practitioners are simply frauds, and know it themselves. My belief is that Dr. Bach is such a practitioner.
The test that ALS patients, and their families, ought to apply to such claims is a simpler one. If you find a doctor who will not concede that he has ever made a mistake, you are not working with a person whose work is grounded in science. As Professor Dennett of Tufts University has said, “Science is not simply a matter of making mistakes, but of making them in public.” Science-based professionals share their work, debate vigorously, and learn from their own and others’ mistakes. Professional journals exist to share such conflicting ideas and forms of treatment, and medical progress goes forward.
Mike West Monroe

Mike,

The "test" you suggest is reasonable and may help in some cases, though some practicioners (doctors, etc.) may admit to making mistakes or they may not address this question one way or the other.

Regarding my idea for a certification proposal, I am making no such assumptions. Once established, the burden would be entirely on the practitioner making the claim. Thus if they do not try to get a certification or fail if they try, the significant thing for patients and families is that they and their claimed treatment lacks the certification. Assuming the certification process is reasonable, unbiased, reliable and not overy burdensome in terms of fulfilling whatever criteria would be established, patients & families - particularly the thousands newly diagnosed every year, could reasonably presume that a claimed treatment that has not been certified is probably not worth pursuing. At minimum, it should raise a red flag, and lead to questioning the practitioner as to why they do not have it or asking them to try to get it. If enough do this, there will be pressure for practitioners making such claims to try to achieve certification; to put up or shut up. Perhaps the failure to achieve certification for extraordinary claims could even be the basis of lawsuits for fraud, false advertising, medical malpractice, etc. Hopefully, these sort of disincentives would help weed out those who might be making false claims because of financial or other incentives. I envision the certification to be sort of a stamp of approval by the ALS community, to be developed by input from PALS, CALS, and researchers and clinicians with expertise in ALS. Obviously, the devil would be in the details in establishing the process involved to get certification. It would have to meet several critera, such as not being unduly burdensome on the claimant, financially or otherwise, be fair and unbiased and as objective as possible, consistency with sound scientific and medical principles related to evaluation and with what is known about ALS, etc. Setting this up would take some doing, but in the long run, could save a lot of time, energy and money - expended by newly diagnosed PALS searching for viable treatments, often reinventing the wheels that have been turning for years, even decades.

Posted by: Questioner - Thursday, July 27, 2006 8:14:01 PM

Quote:

quote:Originally posted by Mike West Monroe
Dramatic progress has been made recently, at Johns Hopkins and Mass General, and scientists are close to understanding how neuron death occurs in ALS, if not why. Within the next few decades, I would predict that treatments will be found for ALS. Even if they come too late for many, there is hope and there is, above all, a reason to participate in clinical trials at places of the quality of Johns Hopkins. We did not do this, to our regret, since such trials might have helped others who will be stricken with this horrible disease.

Mike West Monroe

Mike,

This is a response to a a different part of the same post, but was getting long and also a different topic, so thought it should be a different post.

You mention that there have recently been dramatic breakthroughs recently. From what I've read that characterization seems somewhat optimistic, at least in terms of anything that would help anytime soon. Speaking of which, you predict treatments within the next few decades. If you are correct, and real treatments (never mind a cure) are more than a decade away, I find that totally unacceptable.

Just last night, on the News Hour with Jim Leherer, they had a segment about a new advocacy organization for Alzheimers and the new urgency they are trying to bring to find treatments for that horrible disease. One point the person interviewed (a former reporter whose husband has Alzheimers) made is that, incredibly, the federal funding for Alzheimers is going DOWN, not UP, despite the projections for an explosion of cases as the baby boomers age if good treatments are not found. This is because the overall NIH budget is going down, and for the 4th year in a row, will be lower than the previous year in inflation-adjusted dollars. So where the H is the urgency, both with respect to ALS and health care research for serious diseases in general??? Why is there not a health coalition planning a massive rally on the Mall in October, before the election, demanding dramatic INCREASES in funding rather than DECREASES, and a more rational process of allocating federal research dollars, and threatening to hold the the politicians and the parties responsible for failing to address this in the November elections and the 08 Presidential elections? For those so inclined, might also throw in the stem cell issue and maybe also reforming the FDA procedures for fast-tracking drugs for some diseases like ALS (this is one of the priorities of the new Alzheimer's group).

Between the federal funding cuts for medical research and the stem cell policies I think there is little question that our government has been significantly impeding the pace of medical progress, with tremendous costs in health, suffering, lost productivity, disability, medical expenses, etc., now and increasingly in the future. Health care is alreadly the single largest area of expense in the national economy, and if good treatments aren't shortly forthcoming for diseases like Alzheimer's, this (and other related costs) will rise dramatically.

Where are the priorities? Where is the sense of urgency?
Where is the outrage?! I'm speaking both in relation to ALS and to health care research in general (not to mention the irrational health care delivery and financing systems). There are, of course, many other pressing societal and governmental priorities, but surely horrendous or even just serious diseases and disabilities that affect or will affect tens of millions of people should be pretty high up on the list.

If we were living in Uganda or Chile or Sweden, it wouldn't really matter, because those countries lack the resources to make much of difference regardless of how high a priority curing disease is. However we live in a country that could make a difference; the richest, most powerful nation in history, with the greatest capability (current and potential) of cutting-edge medical research. Yet in a record federal budget of over 3 trillion dollars, the entire NIH budget is only about $30 billion, or not even 1% of the total budget, and becoming a smaller proportion every year for the past 3 or 4 years. Going forward, it is projected to become an increasingly smaller percentage of the total budget.

Is this acceptable? Imagine if during the 80's the federal AIDS budget had been cut 3 or 4 years in a row, as has been happening for overall health research funding and for most diseases in the past 4 years. Imagine if someone had told AIDS patients and activists back then that there might be treatments in the next few decades. What does anyone imagine their reaction might have been to these things???

Sorry for venting, but that comment about treatments for ALS in the next few decades got my dander up, though I'm not blaming you; it was just a prediction. I know that it is very unlikely there will be good treatments available for ALS in the next year; even the next 2 or 3 years. But decades, i.e. 10 or more years away, seems unacceptable - unacceptable because if the will, the priorites and thus the money was there, it probably wouldn't have to be another decade or more. This is not just a scientific and medical question; it is, to a large extent, a moral and political one.

If anyone tells you that the process of allocating federal funding for medical research is fair, objective and purely based on science and medicine, or that the amount spent for ALS specifically, or health research in general, they either don't know what they are talking about or they are lying. And, yes, I've heard, for example, the head of the NIH, disingenuously make such claims, at least with respect to the process.

Posted by: Questioner - Thursday, July 27, 2006 8:21:41 PM

Quote:

quote:[i
If anyone tells you that the process of allocating federal funding for medical research is fair, objective and purely based on science and medicine, or that the amount spent for ALS specifically, or health research in general, they either don't know what they are talking about or they are lying. And, yes, I've heard, for example, the head of the NIH, disingenuously make such claims, at least with respect to the process.

I meant to say that "If anyone tells you that the process of allocating federal funding for medical research is fair, objective and purely based on science and medicine, or that the amount spent for ALS specifically, or health research in general, is adequate, they either don't know what they are talking about or they are lying...."

Posted by: GLS - Monday, August 28, 2006 3:07:12 PM

Hi everyone, this is my first posting and I find the discussions interesting. Recently, my wife had been diagnosed with Probable ALS, and of course we're hoping it's anything but ALS. Today, I was made aware of an article in a Knoxville newspaper regarding a person treated by both Dr. Bach and Dr. Rhee and is apparently back on his feet again. This person was diagnosed with ALS in 2003 then later claims to have been diagnosed with Lyme and treated appropriately with massive doses of antibiotics. Here's the web URL if you care to check it out. I would be very curious of any thoughts or comments you may have regarding the article. http://www.knoxnews.com/kns/health_and_fitness/article/0,1406,KNS_310_4949248,00.html

Gary

Posted by: jmccarty - Tuesday, August 29, 2006 11:09:14 AM

I had a nice and fruitful conversation this AM with the person that is the subject of the article. He’s very articulate and clearly had a Lyme infection that had gone untreated. Despite the clear primary evidence of infection, no treatments were appropriately pursued by treating MDs until well after the later diagnosis of ALS. This appears to be a case in which the ALS diagnosis was incorrect and treatment for Lyme bacteria resulted in substantial but not complete improvement. The evidence to date, however, would be that this type of misdiagnosis is not typical. This person’s experience, though, certainly reinforces the importance of vigilance for tick bites as well as bringing any such information clearly into the diagnosis discussion.

John McCarty, PhD
Treatment Investigator,
ALS Therapy Development Foundation

Posted by: GLS - Tuesday, August 29, 2006 2:08:18 PM

Quote:

quote:Originally posted by jmccarty
I had a nice and fruitful conversation this AM with the person that is the subject of the article. He’s very articulate and clearly had a Lyme infection that had gone untreated. Despite the clear primary evidence of infection, no treatments were appropriately pursued by treating MDs until well after the later diagnosis of ALS. This appears to be a case in which the ALS diagnosis was incorrect and treatment for Lyme bacteria resulted in substantial but not complete improvement. The evidence to date, however, would be that this type of misdiagnosis is not typical. This person’s experience, though, certainly reinforces the importance of vigilance for tick bites as well as bringing any such information clearly into the diagnosis discussion.

John McCarty, PhD
Treatment Investigator,
ALS Therapy Development Foundation

Thanks John, if you could tell me how you contacted him that would help me considerably as my wife and I want to discuss and compare our symptoms with him. All the Lyme testing performed yielded negative results (close but not all factors) yet the history of the tick infested environment we lived in for 20+ years in Dutchess Co. NY. can hardly be eliminated as a possible problem. We feel at this point (our ALS doctors and support group) are no longer looking at possible alternatives and we just don't agree that it is ALS

Posted by: jmccarty - Tuesday, August 29, 2006 3:23:51 PM

GLS,
I’ll send an email to the gentleman indicating your interest to find out more and I’m sure he will contact you.

I would definitely caution about placing too much emphasis on this as an alternative diagnosis. In particular, the interpretation of the various diagnostics is very tricky and I would be very critical of attempts to diagnose Lyme with insufficient solid criteria. In this particular case, from my understanding, the unequivocal bull’s eye rash was evident on two different occasions and still not followed up on by the treating MD.

As in the past, I would encourage PALS to seek out the guidance from experts in infectious disease generally and not necessarily those focused on Lyme disease. Many, many PALS have been down this path unsuccessfully in the past.

John McCarty, PhD
Treatment Investigator,
ALS Therapy Development Foundation

Posted by: SevierWeather - Tuesday, August 29, 2006 3:54:53 PM

Hello, all. This is my inaugural post on the forum, and I am, in fact, the guy about whom that article was written. Many thanks to John for his phone call and the invitation to sign up here. I will be happy to try and answer any questions you might have about my medical misadventures. It has been, if I may borrow the phrase, a "long, strange trip"! Oh, if spelling counts against me, I should leave right now.

The newspaper reporter did a fine job of trying to condense years worth of symptoms, testing, treatment, side-effects, and results into one article, but there are, of course, lots of fine points that had to be left out.

My email is open to forum members, so feel free to drop me a line. If I see something to which I might be able to contribute, I'll post, but look for me to read a lot more than I write.

/on topic

Dr. Bach is a very, very strange man. My local doctor referred me to Bach's practice because I was in such sad shape that he (local doc) was afraid to tinker with any sort of treatment for fear of finishing me off. Dr. Bach reviewed my medical files sent from my neurologist and family doctor, ran Western Blots with iGenex as well as Medical Diagnostic Laboratories (also PCR for Bb), screened me for co-infections, and did a pretty thurough physical exam.

Based on my clinical presentation and prior testing he started me on injections of Rocephin and oral Doxycycline. He recommended that I stop the Rilutek and Remeron I was taking because of possible immunosupression

Since I was traveling such a great distance and money was an issue, I was to return in six weeks rather than three. In that time, and through the present, I was under the care of my family doc and my neurologist who would call him if the need arose.

This entire procedure continued for six months. The very first round of testing showed that I did indeed have Babesiosis, so the drug Atovaquone was prescribed to treat it. As the treatment progressed, my Western Blot tests began to show increasingly strong responses until I got two positives, one from each laboratory. Medical Diagnostic Laboratories also returned a positive PCR for Borrelia burgdorferi .

After the consult where I had learned about the positive tests, Dr. Bach referred me to Dr. Richard Rhee in new Jersey. As soon as he learned I had that appointment set, Dr. Bach fired me via his attorney as the original poster described. I have had no further contact with him since.

Dr. Rhee is a perfectly normal doctor by comparison! He is great aboutstaying in contact with me as well as my local doctors and nurses. It was he who suggested the IV antibiotics via Port-a-Cath. Those were prescribed by my local neurologist -with some strong reservations, I should add- and I have enjoyed a rather remarkable recovery as a result.

So is he a quack? It is my opinion that Bach is a serious head-case, but I might well be dead without him. The big thanks goes to my poor local doc who started me on the right path and is suffering as a result. Now he has the stigma of “Lyme Doctor” attached to his practice and everyone in the establishment is trying to run him out of town.

Posted by: GLS - Tuesday, August 29, 2006 4:03:07 PM

Quote:

quote:Originally posted by jmccarty
GLS,
I’ll send an email to the gentleman indicating your interest to find out more and I’m sure he will contact you.

I would definitely caution about placing too much emphasis on this as an alternative diagnosis. In particular, the interpretation of the various diagnostics is very tricky and I would be very critical of attempts to diagnose Lyme with insufficient solid criteria. In this particular case, from my understanding, the unequivocal bull’s eye rash was evident on two different occasions and still not followed up on by the treating MD.

As in the past, I would encourage PALS to seek out the guidance from experts in infectious disease generally and not necessarily those focused on Lyme disease. Many, many PALS have been down this path unsuccessfully in the past.

John McCarty, PhD
Treatment Investigator,
ALS Therapy Development Foundation

Thanks for the sound advise and we will be extremely careful not to overrule any diagnosis given to us thus far. All we want is to ensure we are doing everything possible to prevent a possible misdiagnosis and avoid wasting precious time when we could be treating the appropriate illness.

Posted by: mizzlizz - Tuesday, August 29, 2006 9:25:49 PM

The Knoxville paper did a remarkable job of writing about this case. Also, I am very impressed that they provided links to all sorts of information about Lyme disease and included a link to the 2003 report about the original diagnosis. Well done KnoxNews!

The Lyme vs. ALS debate just grows more intriguing all the time. Why hasn't some Ph.D. candidate, who is NOT associated with any of the leading academic ALS or Lyme centers, and whose adviser is NOT receiving funding from questionable sources, picked up this problem as a dissertation topic? We need credible unbiased medical evidence that there is sometimes a misdiagnosis.

Clearly in your case, SevierWeather--it was well worth the risk to pursue a Lyme disease diagnosis. Congratulations to you and keep up the good work and improvements--I'm sure that your inbox will be filling up soon! To all others, again, please be careful with your energy and resources, especially if it involves an expensive trip to Dr. B!

******Also, a big thank you to Dr. McCarty for following up with the patient and reporting back to us!

Liz

Posted by: Michele - Tuesday, August 29, 2006 11:43:14 PM

Quote:

Hi Michael,

Don't worry about the spelling - no editors here (I hope).
Very glad you have joined the forum.

Michele

Never give up - never surrender

Posted by: Meg1 - Wednesday, August 30, 2006 12:00:44 AM

Quote:

quote:Originally posted by SevierWeather
I will be happy to try and answer any questions you might have about my medical misadventures.

Congrats, Sevier, and thank you for posting here. I have been reading about Lyme Disease misdiagnosed as ALS for years and you are the first person I've been able to find who had an unequivocal ALS diagnosis from an ALS center who has subsequently improved while undergoing Lyme treatment. Would you mind telling us what your exact diagnosis from the Carolinas ALS center was--suspected, possible, probable, definite? Were there any differences between your EMG and the typical EMG in PALS? Were your symptoms entirely consistent with ALS? And what does your ALS doc say about your improvement?

Thanks.

Meg1

Posted by: GLS - Wednesday, August 30, 2006 10:42:53 AM

Quote:

quote:Originally posted by SevierWeather
Hello, all. This is my inaugural post on the forum, and I am, in fact, the guy about whom that article was written. Many thanks to John for his phone call and the invitation to sign up here. I will be happy to try and answer any questions you might have about my medical misadventures. It has been, if I may borrow the phrase, a "long, strange trip"! Oh, if spelling counts against me, I should leave right now.

The newspaper reporter did a fine job of trying to condense years worth of symptoms, testing, treatment, side-effects, and results into one article, but there are, of course, lots of fine points that had to be left out.

My email is open to forum members, so feel free to drop me a line. If I see something to which I might be able to contribute, I'll post, but look for me to read a lot more than I write.

/on topic

Dr. Bach is a very, very strange man. My local doctor referred me to Bach's practice because I was in such sad shape that he (local doc) was afraid to tinker with any sort of treatment for fear of finishing me off. Dr. Bach reviewed my medical files sent from my neurologist and family doctor, ran Western Blots with iGenex as well as Medical Diagnostic Laboratories (also PCR for Bb), screened me for co-infections, and did a pretty thurough physical exam.

Based on my clinical presentation and prior testing he started me on injections of Rocephin and oral Doxycycline. He recommended that I stop the Rilutek and Remeron I was taking because of possible immunosupression

Since I was traveling such a great distance and money was an issue, I was to return in six weeks rather than three. In that time, and through the present, I was under the care of my family doc and my neurologist who would call him if the need arose.

This entire procedure continued for six months. The very first round of testing showed that I did indeed have Babesiosis, so the drug Atovaquone was prescribed to treat it. As the treatment progressed, my Western Blot tests began to show increasingly strong responses until I got two positives, one from each laboratory. Medical Diagnostic Laboratories also returned a positive PCR for Borrelia burgdorferi .

After the consult where I had learned about the positive tests, Dr. Bach referred me to Dr. Richard Rhee in new Jersey. As soon as he learned I had that appointment set, Dr. Bach fired me via his attorney as the original poster described. I have had no further contact with him since.

Dr. Rhee is a perfectly normal doctor by comparison! He is great aboutstaying in contact with me as well as my local doctors and nurses. It was he who suggested the IV antibiotics via Port-a-Cath. Those were prescribed by my local neurologist -with some strong reservations, I should add- and I have enjoyed a rather remarkable recovery as a result.

So is he a quack? It is my opinion that Bach is a serious head-case, but I might well be dead without him. The big thanks goes to my poor local doc who started me on the right path and is suffering as a result. Now he has the stigma of “Lyme Doctor” attached to his practice and everyone in the establishment is trying to run him out of town.

Mike, can you tell me if you had joint pains during the course of your illness? This I understand is a well known trait of Lyme Disease as it tends to seek out the muscles and joints while running its course. My wife has had little to no joint or muscle pain to speak of but rather fatigue and muscle weakness especially in the legs and using her mouth muscles to form speech. BTW - thanks for joining the forum. My hat is off to a person willing to tell of his success story to help others.

Posted by: GLS - Friday, September 1, 2006 1:41:54 PM

Hey everyone, I just wanted to close by saying how appreciative we were to have the opportunity to speak with SevierWeather on the phone night before last. We (my wife as well) have decided to go for another round of Lyme testing and evaluation regarding her condition. Not sure if we will choose the same doctors for a variety of reasons but we will see an infectious disease specialist before too long. Thanks again to everyone for pitching in and locating Mr. SevierWeather for me and for helping discuss the possiblities and hope.

Posted by: nhhawkeye - Friday, September 1, 2006 7:31:35 PM

I'm sure there are actually cases where this occurred, but it is probably rare indeed and results more from denial of ALS and unscrupulous practitioners than anything else. I myself researched the subject heavily for about two years before discounting it. All that being said, the Klinghardt protocol is the only one I would ever try if I had chronic lyme. Massive antibiotic therapy is far too toxic to the bodies systems. Just my 2 cents.
MarkNH

Posted by: emilesland - Saturday, September 16, 2006 8:28:04 PM

The Lyme Disease Research Database is a great resource for information on Lyme.

My partner is beating Lyme with Dr. Cowden's protocol. I do support The Klinghardt Neurotoxin Elimination Protocol as well. We both believe the protocol is working mostly due to her healthy lifestyle.

The best way to beat any disease (in my experience) is to begin lifestlye changes that include an organic vegitarian diet, exercise daily, routine detoxing rituals and meditation.

Good fortune to all,
E

http://www.lyme-disease-research-database.com

Posted by: Questioner - Tuesday, September 19, 2006 1:30:11 AM

Response to a few posts in this thread: My understanding is that ALS is, by definition, a collection of symptoms and findings indicative of motor neuron death or dysfunction, FOR WHICH NO CAUSE CAN BE DTERMINED. Thus if someone has what appears to be ALS but is found to have Lyme and improves with treatment for Lyme, by definition, they do not have ALS, but Lyme masquerading as ALS. But this distinction is largely a semantic one, a matter of definition. The definition and diagnosis of ALS rests on, and begs the issue of, how thoroughly the evaluating neurologist searches for possible causes. If, for example, Lyme is not investigated as a possibility, or not investigated thoroughly enough or properly, one cannot really say that the person has ALS as opposed to Lyme causing ALS symptoms.

I think I may have mentioned here before an article by Dr. Bernard Patten on the Syndromic nature of ALS. It was written in the late 80's, but I assume most of what he wrote is still valid. In this article Patten, an ALS expert, reports on several cases of people referred to him for a second opinion with an ALS dx who, on his further investigation, turned out to have other things causing their symptoms, some of which were treatable. I can post the reference if anyone is interested; I found it quite an interesting article.

To relate this back to Lyme, even if Lyme is tested for in the diagnostic workup, there is still the question of whether it is the proper testing. There seems to be a fair amount of dispute over this. My own internist, who I respect a lot and who has of late been on a Lyme kick, says that he has many patients who were not properly evaluated for Lyme but turn out to have it and are getting better once treated. I know some of these people; some are on the Marshal protocol. So if the neurologist isn't doing all the proper testing for Lyme, maybe it is missed in some instances. The same issue comes up with testing for other things, like Vitamin D levels and Mercury. Some doctors, like my internist (admittedly rather holistic) believe that the usual tests for these things are inadequate and/or that the normal ranges reported are incorrect (as with Vitamin D levels, for instance). I am not qualified to judge these disputes, but think it important to at least realize that there are these disagreements.

And then there are the things that are not routinely tested for in an ALS workup. For instance, how do neurologists know that, say, Celiac Disease or Antiphospholipid Antibody Syndrome doesn't cause ALS or ALS-like symptoms if these things are not routinely tested for in the ALS workup?

Apparently, there are many conditions and diseases that can impair motor neurons, some of which can mimic ALS. Given this, perhaps there are other, as yet unrecognized things that can do the same. Motor neurons are apparently quite vulnerable, relative to other cells, to being overtaxed, overstressed, etc. If there is a pre-existing vulnerabililty, perhaps many things, individually or in combination, can impair or destroy motor neurons. It seems to me that researchers and clinincians need to keep an open mind to new potential possible causes.

Posted by: vahab - Tuesday, September 19, 2006 9:21:53 AM

Dear Questioner:

What is Marshal's protocol? What is an established protocol to fight Lyme disease? If testing and eliminatiung Lyme is difficult, would it be harmful for PALS to follow one of the Lyme disease treatment protocols and see how it impacts their health? Would following the protocol be harmful to an ALS paitient?

Posted by: Taylor - Tuesday, September 19, 2006 9:51:30 AM

Questioner,
Can you please post the link to the article you mentioned?
Thanks, Taylor

Posted by: GLS - Tuesday, September 19, 2006 2:29:36 PM

Dear Questioner, please post the article you referred to. It sounds interesting. Thanks

Posted by: Questioner - Tuesday, September 19, 2006 2:39:54 PM

Quote:

quote:Originally posted by vahab
Dear Questioner:

What is Marshal's protocol? What is an established protocol to fight Lyme disease? If testing and eliminatiung Lyme is difficult, would it be harmful for PALS to follow one of the Lyme disease treatment protocols and see how it impacts their health? Would following the protocol be harmful to an ALS paitient?

This is the link to the Marshall protocol website: http://www.marshallprotocol.com/

I'm sorry, I cannot answer your questions. I just know that my internist has several people on this protocol for Lyme. One reason he suspects I might have Lyme is the levels and ratios of the 2 forms of Vitamin D mentioned on the site. Apparently the Lyme organism uses the hosts Vitamin D, at least according to my internist and I think this protocol. Part of the protocol is to actually stop taking Vitamin D, at least for awhile, to not "feed" the Lyme organism. I don't know how widely known or accepted this protocol or its assumptions are.

Posted by: Nye - Thursday, September 21, 2006 4:50:53 PM

Quote:

quote:Originally posted by Questioner
Response to a few posts in this thread: My understanding is that ALS is, by definition, a collection of symptoms and findings indicative of motor neuron death or dysfunction, FOR WHICH NO CAUSE CAN BE DTERMINED. Thus if someone has what appears to be ALS but is found to have Lyme and improves with treatment for Lyme, by definition, they do not have ALS, but Lyme masquerading as ALS. But this distinction is largely a semantic one, a matter of definition. The definition and diagnosis of ALS rests on, and begs the issue of, how thoroughly the evaluating neurologist searches for possible causes. If, for example, Lyme is not investigated as a possibility, or not investigated thoroughly enough or properly, one cannot really say that the person has ALS as opposed to Lyme causing ALS symptoms.

I think I may have mentioned here before an article by Dr. Bernard Patten on the Syndromic nature of ALS. It was written in the late 80's, but I assume most of what he wrote is still valid. In this article Patten, an ALS expert, reports on several cases of people referred to him for a second opinion with an ALS dx who, on his further investigation, turned out to have other things causing their symptoms, some of which were treatable. I can post the reference if anyone is interested; I found it quite an interesting article.

To relate this back to Lyme, even if Lyme is tested for in the diagnostic workup, there is still the question of whether it is the proper testing. There seems to be a fair amount of dispute over this. My own internist, who I respect a lot and who has of late been on a Lyme kick, says that he has many patients who were not properly evaluated for Lyme but turn out to have it and are getting better once treated. I know some of these people; some are on the Marshal protocol. So if the neurologist isn't doing all the proper testing for Lyme, maybe it is missed in some instances. The same issue comes up with testing for other things, like Vitamin D levels and Mercury. Some doctors, like my internist (admittedly rather holistic) believe that the usual tests for these things are inadequate and/or that the normal ranges reported are incorrect (as with Vitamin D levels, for instance). I am not qualified to judge these disputes, but think it important to at least realize that there are these disagreements.

And then there are the things that are not routinely tested for in an ALS workup. For instance, how do neurologists know that, say, Celiac Disease or Antiphospholipid Antibody Syndrome doesn't cause ALS or ALS-like symptoms if these things are not routinely tested for in the ALS workup?

Apparently, there are many conditions and diseases that can impair motor neurons, some of which can mimic ALS. Given this, perhaps there are other, as yet unrecognized things that can do the same. Motor neurons are apparently quite vulnerable, relative to other cells, to being overtaxed, overstressed, etc. If there is a pre-existing vulnerabililty, perhaps many things, individually or in combination, can impair or destroy motor neurons. It seems to me that researchers and clinincians need to keep an open mind to new potential possible causes.

Posted by: lou - Friday, October 6, 2006 11:13:31 AM

The kind of bashing seen here for lyme doctors may be one of the reasons for what is perceived as peculiar behavior. Doctors are trying to deal with an emerging disease at the same time as they are being attacked by mainstream medicine which has certainly not provided the answers. Leads to seige mentality.

And the problem is that syndromes (collections of symptoms) are not diseases in themselves with one cause and one cure, probably, and therefore can be difficult to diagnose and treat.

Since no one has a foolproof test for either lyme or ALS, there is going to be uncertainty about who will benefit from lyme treatment. Uncertainty is hard to live with, and disappointed people are apt to lash out in frustration.

Some who have been diagnosed by leading medical institutions with ALS, based on all the usual testing, have benefitted from treatment for lyme and other tickborne diseases. If people have gotten past the earlier stage, treatment may not cure, but only hold back the worst, and partially restore function. Sorry, we all want the easy and short treatment, don't we?

So, it really makes me mad when people post the kind of slander I have seen on this board. Do you want to discourage anyone with a terminal diagnosis from looking for other ;possible treatable causes? Even if it turns out some will be disappointed, others may benefit. Be careful about slamming doors. Innocent people will be hurt.

Posted by: Malipu - Friday, October 6, 2006 12:43:29 PM

Dear Lou,
I will try to be very brief: back in January of 2006 I held the same oipnion as you displayed in your post. And, same as you, I argued with other members who tried hard to warn me. Today, I speak from first hand experience. If one is PROPERLY diagnosed with als, i.e. clinical symptoms of muscle waste, athrophy, fascic, cramps, denervation in more than 2 major areas - NO MATTER HOW POSITIVE ONE MAY TEST FOR LYME, using the high dose antibiotics per the Lyme theories, WILL HURT BEYOND REPAIR! Yes, we all are entitled to look for hope, etc. - PLEASE, treating LYME WILL NOT HELP ALS. For what it's worth, anyone contemplating trying the Lyme road, just because there is nothing else left to hope for - DON'T!

Posted by: lou - Friday, October 6, 2006 2:51:16 PM

Proper diagnosis is exactly the problem. Apparently very many cases are not properly diagnosed. The tests are just not good enough.

If this did not work for you, no one else should consider it?

Posted by: Malipu - Friday, October 6, 2006 4:15:57 PM

I am not in the mood to argue. My post was clear. I speak to those PALS who are not truly doubting their diagnose, and yet, somehow get to think, that may be, JUST MAY BE, they have Lyme...and that just may be, the treatment will work...
Best to all.

Posted by: jmccarty - Friday, October 6, 2006 4:37:13 PM

Malipu, thanks for your post and sharing - give me a shout sometime,

John McCarty, PhD
Treatment Investigator,
ALS Therapy Development Foundation

Posted by: Michele - Thursday, October 19, 2006 6:54:18 PM

Microbes & Infection 2006 Sep 22; [Epub ahead of print]

Invasion of human neuronal and glial cells by an infectious strain of
Borrelia burgdorferi.

* Livengood JA,
* Gilmore RD Jr.

Centers for Disease Control and Prevention, Division of Vector-borne
Infectious Diseases, 3150 Rampart Road, CSU Foothills Campus, Fort
Collins, CO 80522, USA.

Human infection by Borrelia burgdorferi, the etiological agent for
Lyme disease, can result in serious acute and late-term disorders
including neuroborreliosis, a degenerative condition of the peripheral
and central nervous systems.

To examine the mechanisms involved in the cellular pathogenesis of
neuroborreliosis, we investigated the ability of B. burgdorferi to
attach to and/or invade a panel of human neuroglial and cortical
neuronal cells.

In all neural cells tested, we observed B. burgdorferi in association
with the cell by confocal microscopy.

Further analysis by differential immunofluorescent staining of
external and internal organisms, and a gentamicin protection assay
demonstrated an intracellular localization of B. burgdorferi.

A non-infectious strain of B. burgdorferi was attenuated in its
ability to associate with these neural cells, suggesting that a
specific borrelial factor related to cellular infectivity was
responsible for the association.

Cytopathic effects were not observed following infection of these cell
lines with B. burgdorferi, and internalized spirochetes were found to
be viable.

Invasion of neural cells by B. burgdorferi provides a putative
mechanism for the organism to avoid the host's immune response while
potentially causing functional damage to neural cells during infection
of the CNS.

PMID: 17045505

Never give up - never surrender

Posted by: linda5 - Thursday, October 19, 2006 8:17:34 PM

Hi...my husband and I followed almost 300 PALS on an e-mail list in 2000 who tested positive on a IGeneX test for supposed ALS/ Lyme...or ALS misdiagnosed as Lyme...
Treatment included for some Flagyl...for some IV Rocephin aka Ceftriaxone...some people going out of state to get central lines for Ceftriaxone put in by so called Lyme-literate docs......
What my husband and I saw from tracking these people was a trend in "less" of life expectancy..."not " a greater one..every time progression occured it was called herxing..but sooner than later unfortunalately for most the PAL passed away...
So he never participated in this experiment...
Yes , Dr. Bach has been around for many years now..with this protocol..unfortunately there are not many PALS left around to tell you guys about it,,,Lisa

Posted by: stschubert - Sunday, October 29, 2006 12:07:09 AM

I have not posted before but wanted to speak to the CDC study on the confirmation of borrellia burdorferi (bb-the lyme spirochete) intracellular in neural cells. It is excellent research and more research of that kind may help get to the root of some "syndrome" diseases--not necessarily ALS.

When BB is intracellular it is out of reach of the immune system and consequently diagnotic tests won't come out positive--no antibodies being made--despite the fact the bb may be destroying nerve tissue. It is possible that a bb infection like that would manifest ALS-like symptoms. However, advanced Lyme/bb may be like advanced/tertiary syphillus--beyond treatment--and attempting to treat it at that stage may hasten the body's decline. I do wonder if that is what happened to at least some of the ALS patients who attempted a lyme antibiotic protocol and perished more quickly. I am NOT advocating that any ALS patient pursue such a protocol, I just wondered if anyone out there had looked at this possibility.

Posted by: linda5 - Sunday, October 29, 2006 9:22:06 AM

Hi,
I have personally have never met a scientist or a researcher who feels ALS could be "triggered" by Lyme.
However, in my own opinion your theory is a good one...( but please note I'm not a scientist nowhere near one).. so whatever I think is pretty meaningless..

But, I too feel it could be a "possible " scenario that Lyme may "trigger" ALS in some people....however once you do have ALS it is to late treat with Lyme protocols..infact from what I have seen people die "earlier" and "not later" that attempt Lyme treatments...so I strongly discourage people from trying them..

Over the past 7 years I have spoken to many scientists..with many different theories..however the one that I personally agree with the most..is that ALS is a "syndrome"..probably "triggered" by many different things in different people....but removing, treating, or eliminating the "trigger" does not help once the ALS process begins..

Also,due to the probability of many different things triggering ALS...even the so-called sporadic cases are most likely really genetic in nature..as the " vast majority" of healthy people exposed to the same things do not develop ALS..."even if they do go completely untreated or have continual exposure"...

Again, personally I feel you may be right Lyme may "trigger" ALS in some people..but from my observations of watching close to 300 people attempt treating their Lyme to cure their ALS in 2000..they died at a "faster" pace not a "slower" one...so I strongly discourage anyone with ALS to attempt treating Lyme if they have been diagnosed with ALS by a specialist...Lisa

Posted by: Lyme patient - Friday, January 26, 2007 12:26:16 PM

Quote:

quote:Originally posted by mizzlizz

Bottom line--follow Dr. MaCarty's sane advice on this topic and see an infectious disease doctor. What I like about them is that they have more of a "whole body system" approach. You get interviewed thoroughly about anything and everything you may have been exposed to. They're not necessarily biased for or against a Lyme disease diagnosis or an ALS diagnosis. The neurologists we've dealt refuse to believe that any disease could cause Dad's ALS symptoms; the so-called "Lyme literate" docs are overly zealous in favor of Lyme.

I was alerted to this thread because it was posted on our Lyme Disease discussion board.

First, I can tell you that Dr Martz truly exists and has a practice treating Lyme patients.

I do know which dr gave him his life back and it wasn't DR B as stated above.

I signed in here to tell people that IF you ARE interested in checking out a Lyme diagnosis, do NOT go to an infectious disease dr. They are NOT interested in the "whole body" as stated above. No way!

They have left SO many Lyme patients in the lurch, that it borders on the criminal! Patients who were tested through their crummy labs and then told that after a few weeks of antibiotics that they were cured.

Then later, Lyme rears its ugly head and destroys their lives completely!

Some of them end up with symptoms of MS, fibromyalgia, ALS, Parkinson's, etc.

I was treated for 4 years with antibiotics and have been off abx now for 2 years. I'm feeling GREAT and am so grateful for my LLMD (Lyme Literate MD)!

ILADS doctors are the best!

Thank you for listening. I wish you well!

Posted by: Mike West Monroe - Saturday, February 10, 2007 10:58:55 PM

I haven’t posted on this thread lately, but it is gratifying to see that 5000+ people have visited it, and hopefully been warned against some of the frauds like Dr. Gregory Bach, who are preying on vulnerable ALS patients.
A number of people have emailed me with stories very similar to our own about Dr. Bach and I am urging them to go public and post their stories so that others can avoid being taken advantage of. For example, one person told me recently that he felt very stupid after paying 20,000 to Bach and then being dismissed. That sum seems to be about what Bach wants to extract before dumping patients.
A news note: Greg Bach is still flourishing financially, ripping off vulnerable, dying people. See this link for a picture of him with the biggest fraud of them all - George W. Bush. http://www.drgregorybach.com/ Maybe Bush will be there when Bach opens his one-man clinic to solve all the health problems of the world!
Our Reality: Our patient, after spending 20,000 on Bach, is now totally unable to move or speak. He may die tonight or he may go on for years and years. Death is not the worst part of this disease. Living with total paralysis is. I know he wishes he could have died a couple years ago but Bach convinced him that there was hope and he lost the chance to end his own life as he might have wanted to, and now we all are just caring for him at home and waiting for, and dreading, the inevitable, whenever it comes.
One more “gift” of Dr. Bach – Quite a few close relatives of our patient bought into the Bach diagnosis 100% and decided that there was nothing serious to worry about and cut off our patient entirely! “He’s got the lyme real bad,” one of them told me, “but he’ll be okay.” When I said that you have to see him while he can still talk, they told me I was negative and thinking that I knew more than Dr. Bach. A lot of anger and a lot of blame.
Now, they are still unable to accept that it’s ALS and simply avoid seeing him, for a year and more. They sit alone and he sits alone and the sadness grows deeper and deeper. Some relatives don’t speak to their parents over this. And some parents cut off their own children. Of course, families have their problems but the tendency of so many to accept the Bach nonsense did a lot of damage in this family. I like to think that, if at the start, after getting an ALS diagnosis from three top neurologists, we had simply been able to face the horrible facts of ALS without the two years of delusion provided by Bach, we would have all been better off now.
The majority of people, even relative strangers, however, have been wonderful and kind human beings and done so much for our patient. Not that real life is like “Tuesdays With Morrie.” But good people do come to visit and help all the time. Of course, not a word from Bach. He has his money and he is happy to go on the next victim.
Like most con men, he’s clever and chooses people who will not hit back. He makes them feel stupid and abused, and that is the way he prevents them from going public or suing him. Soon enough, they lose all capacity to act or speak, and eventually die, while he goes on bragging about his marvelous cure of Tom Coffey and raises more money for his new clinic with its magical treatments.
Sorry if I sound negative here, but sometimes facing reality is a lot better than fooling yourself that there’s a cure for something that has no cure.

Mike West Monroe

Posted by: dbl30569 - Wednesday, February 28, 2007 9:02:36 PM

I'm a 41yo limb onset PALS dx'ed 07/05 possible & 07/06 definite & 10/06 (Mayo) definite. Mayo tested Lyme (ELISA? I didn't ask) - NEG.

01/07 IgeneX tests were IGg NEG & IGm POS. I have a Groshong cath & do IV Ceftriaxone for Lyme (not ALS <g>).

4 Neuro's have given me a 0% chance of remission or recovery. Other than a Rilutek Rx, they offer NOTHING of use to me. I may have Lyme, I might not - but at least I'm doing SOMETHING.

BTW, why are recent trials using Ceftriaxone? Is it pure coincidence that this and other antibiotics are used to treat Lyme/other infectious diseases?

Don

Posted by: jmccarty - Wednesday, February 28, 2007 9:32:18 PM

Pure coincidence. The pre-clinical study which was used to support ceftriaxone emphasized existing drugs but the supposed targets in ALS for ceft and, for example, minocycline have nothing to do with ‘bugs’.

John McCarty, PhD
Treatment Investigator,
ALS Therapy Development Institute

Posted by: GLS - Wednesday, March 28, 2007 2:57:29 PM

[quote]Originally posted by dbl30569
I'm a 41yo limb onset PALS dx'ed 07/05 possible & 07/06 definite & 10/06 (Mayo) definite. Mayo tested Lyme (ELISA? I didn't ask) - NEG.

01/07 IgeneX tests were IGg NEG & IGm POS. I have a Groshong cath & do IV Ceftriaxone for Lyme (not ALS <g>).

4 Neuro's have given me a 0% chance of remission or recovery. Other than a Rilutek Rx, they offer NOTHING of use to me. I may have Lyme, I might not - but at least I'm doing SOMETHING.

BTW, why are recent trials using Ceftriaxone? Is it pure coincidence that this and other antibiotics are used to treat Lyme/other infectious diseases?

Don

Don, my wife was diagnosed with ALS 10/05. She was tested multiple times for Lyme and all tests came back negative. She has no pain such as joint pain (very common for Lyme patients) but we lived in one of the most heavily tick populated areas of NY for 30yrs. We would like to believe it is Lyme but the neuologists all tell us its ALS. Did you or do you have any pain associated with your condition?

Posted by: Wayne - Wednesday, March 28, 2007 3:45:07 PM

Deleted because the question had already been answered.

Posted by: Mike West Monroe - Monday, April 30, 2007 4:59:31 PM

Beloved husband, son, father, brother has died.

I feel it is best to maintain his anonymity to the end, since the last thing his survivors need now is legal harassment from Dr. Bach.

But now it is even clearer how Bach gets away with preying on ALS patients. The disease is so cruel, so unspeakably devastating, so completely exhausting to families that when it’s all over, no one has the energy or the will to make a public case against Bach.

Dr. Gregory Bach never once admitted he was wrong. After putting the patient through grueling six hour waits in his office, charging 600-1000 for a single session, and insisting on painful and totally unnecessary injections, he lacked the decency to even admit that it wasn’t working. Instead, as he grew sicker, Bach tried to build up guilt in the family, saying “if you’re not positive, he will die” and tried to sell his bogus treatments to other family members – as if ALS was contagious.

After taking 20,000 plus from an ordinary working family, he dismissed the dying man with a cold lawyer’s letter. He never called or spoke to him again.

I can remember Dr. Bach standing there bragging “I’ve had 200 ALS/lyme patients and I haven’t lost one.” No, he hasn’t lost any because he doesn’t stay around for their deaths. He sends them away feeling like fools, knowing that they wasted on him the few precious months of mobility and speech that remained to them. Or that they clung to false hopes and bogus miracle cures instead of discovering or strengthening a faith that could sustain them in the end.

In the last weeks our patient listened to the New Testament, and made it clear to us that that he forgave all those with whom he was still angry. It will take those of us whom he left behind a long time to attain that spirit of peace with which he ended his time on earth.

Mike West Monroe

Posted by: Roy Newton - Tuesday, May 22, 2007 5:08:46 AM

I happened on to this thread by accident, but I'm glad I did. I am a Lyme survivor. I was miss diagnosed for up to 20 years with various problems. All have now mysteriously vanished since the Lymes is "controlled". Not all MDs are created equally. I suffered greatly at the hands of a couple that wanted to fit me into one of their protocols. Several times I came close to eating a bullet. My faith and good science pulled me through. I had a particularly tough case of Lymes that did not respond to antibiotics. However the research on Lymes shows it has a weakness...... Sulfur. I took Methylsulfanlymethane (MSM) by the teaspoon every hour until I could feel a Herx coming on and then I stopped. After about 3 weeks I started feeling much better. After a year I'm still taking MSM and probably will for the rest of my life. All my symptoms have disappeared. Everybody in my family, incuding my extended family have Lymes. Each person has a different set of symptoms to go along with it. Persistence wins.

Posted by: cathyada - Friday, June 8, 2007 10:33:11 AM

Hi,

I have never posted a message before but I thought I must. I have Lyme disease and I saw Dr. Bach for about a year. Now whenever I run across anyone who mentions they have Lyme, the first thing I tell them is that they should NEVER go to Dr. Bach. When I saw Dr. Bach he had me on 25 pills per day...a mix of antibiotics, Mepron, vitamins and whatever else. It got to the point where all I would do is throw up or run to the bathroom. Dr. Bach tried to convince me that I had Lyme, as well as Ehrlichiosis and Babesiosis. Gee, what a surprise, so did everyone else in his waiting room. Then when I told him I thought all the medicines and other pills were making me feel worse, that I lost 25 lbs and felt worse than before, he said that the Lyme was in my stomache which is why I was so nauseated. Then when the symptoms still seemed to be worse, he tried to convince me that Lyme was sexually transmitted and that my husband and I were giving it back and forth. So then I noticed that in his waiting room that he was treating entire families! Then, when it got so bad that I couldn't even keep water in me, I called his office. His wife answered the phone and told me Dr. Bach was with a patient but she could help me. I then told her my problem and her response was for me to take 20 or 30 of the acidophilus! I asked her if she was a nurse and her reply was no, but she had Lyme and she was Dr. Bach's wife so she knew what to do!!! At this point, I stopped seeing Dr. Bach, stopped all the pills, and stopped paying th $600 - $1000 I spent every time I went to his office. Then, I starting feeling so much better when I stopped taking all the pills. Oh, and he also would give me shots of magnesium and gosh knows what else when I went to see him. And of course, the insurance wouldn't cover the shots, would question what they were even for...and Dr. Bach would of course charge $75 or $100 for these shots. My general doctor is the one who recommended Dr. Bach...and has since stopped recommending him since he had other patients who had the same issues. He even had a former patient try to commit suicide....because that patient had severe depression yet Bach was treating him for Lyme. Dr. Bach is a dangerous man....he convinces people that he is their only shot at feeling better. I shudder to think of how many people he is treating for Lyme who are not getting the treatment they need...or the patients who he convinces they have Lyme when they really have a much more serious diseases...or are out thousands of dollars because of seeing this quack. I ended up paying about $10,000 that insurance didn't cover.

When I think back to some of the ludicrous things he would tell me I cringe. He told me I should not have any more kids, the Lyme I had could be fatal for a new baby. He told me that the Babesiosis could kill me if I didn't treat it right away...and thank God I came to him because he was one of the few doctors who knew how to treat Babesiosis. He would ask if I knew anyone who knew Michael J Fox, because he was convinced that he had Lyme disease and not Parkinsons. He would tell me that he cured someone who was blind from Lyme. He even said he had his father's body exhumed because he knew his father died from Lyme and not cancer.

Posted by: tse - Thursday, June 21, 2007 8:30:44 AM

Quote:

quote:Originally posted by tailz
You may want to believe you have ALS.

proof person doesn't know what they talk about.

Quote:

quote:Originally posted by tailzI would also highly recommend you read 'Cross Currents' by Robert Becker. I do not feel these organisms would persist in our bodies if the world were not being mega-dosed with electromagnetic fields - the most recent being from cell phones.

person is a shill, maybe for book or for Bach

Posted by: Dan - Tuesday, June 26, 2007 1:06:31 AM

I'm gonna have to go with tse on this one. "You may want to believe you have ALS" . . . say what??, any person says that doesn't have a clue. Maybe we can vote someone off the island.

Except we'd lose the humor value which is pretty good. I love this one.

Quote:

quote:Originally posted by tailzhttp://www.als.net/forum/topic.asp?TOPIC_ID=1656 We don't need stem cell research. If we would turn off all manmade electromagnetic fields, beginning with cell phones, wireless, and the 60 hz frequency in use today in our homes, infections such as Lyme Disease would stop being cooked into our ALS brains.

Posted by: Jeff Schaffer - Tuesday, June 26, 2007 9:16:39 AM

Yes, I truely want to believe I have ALS. Its such an enjoyable disease. I wouldnt give it up for a pretty penny.
I never have heard such a stupid, inexcusable, statement in my life.
It is so funny to read Tailz posts. Im sure there are people out there with Lyme disease. And it probably is no fun to have. But ALS is very presentable with its symptoms. Any ALS clinic can tell the difference.
Stop trying to diagnose people Tailz.. You could get in serious trouble. And you really arent helping anyone. ..Ron

Posted by: linda5 - Tuesday, June 26, 2007 9:56:45 AM

Ah Ron..
I think Taliz is helping discredit her own theories..more than anyone else here is ...every time she posts...it helps drive the ALS/Lyme quacks "out" of business..as her posts get more and more delusional in nature...so let her keep going in her own little world..( Lyme world)..
Cell phones cooking lyme into the brain..I'm with Dan I'm rolling over laughing right here..we need a laugh every now and then..
People wanting a terminal disease instead of treatable one...I guess she'll diagnos PALS with hypochondria next ? But, then again as she was never diagnosed with ALS to begin with..maybe it is her problem..Lisa

Posted by: Wayne - Tuesday, June 26, 2007 10:01:50 AM

Alright you two. Remember that even if some peoples ideas are completely wacky (most are IMO) or out of touch, they are still that persons ideas. It is possible to argue the idea without attacking the person. I would save the attacks for people who are intentionally trying to harm you (scam artists, crooks, etc..).

Posted by: linda5 - Tuesday, June 26, 2007 10:05:36 AM

Wayne..
I am not typically a mean spirited person.but I tell you ..this woman admitted she was "never diagnosed with ALS" on another thread..sure ALS is easy to cure in yourself ..
" if you don't have it and never did "...
Go take a look at the Living with ALS section... where she dared to have the nerve to sugggest to me.. that I'd "rather" have my husband have a terminal disease than a treatable one...
I'd never want to cause anymore distress to a PALS or CALS and attack them on any type of personal level ...even if I do not agree with their beliefs..but this lady is neither..her sole intent is to convince "everyone here that has ALS that they really have Lyme"...that ALS is Lyme disease.. that has progressed with so called co-infections..and how smart she is for finding the cure and curing herself.. only problem is she openly admits she was never diagnosed with ALS..OK that's not the only problem..but her arguement losses all credinbility to me right there..the icing on the cake are the cell phones baking Lyme into the brain..and the various other delusional ideas..such as people "wanting" to have ALS..Lisa

Here is the statement I was refering to from the living with ALS section..where she openly admits ...she does not have ALS yet..but is convinced if she does not kill off her coinfections she will..

But I AM trying to help. I think if they don't kill my coinfections soon, I will have 'ALS' instead of just Lyme - don't you see? I think they are one in the same - that it depends on where the infection roots.

Posted by: Wayne - Tuesday, June 26, 2007 10:54:32 AM

I understand Lisa and I totally agree with you that her statement to you concerning whether you would want to have Gary with a terminal or treatable disease was completely inappropriate. So I do understand your anger.

Wayne

Posted by: linda5 - Tuesday, June 26, 2007 11:35:02 AM

Wayne.
I understand too at times I can be quite sensitive about some issues..and can lose my temper..so I truly do appreciate the reminder..that I need to keep that in check..and try to see things from others standpoints..
In 2000.,, there was an ALS/lyme group that Gary and I were a part of, as was Harry..we followed over 300 people trying this treatment at the time we were totally new to ALS ...and grasping at straws..to the contrary this lady does not seem to understand..that is why so many PALS fall for the ALS/Lyme scam...because it is much nicer to think you have something treatable than not..
Gary got to the point that he even ordered the bogus Igenex test in 2000..but suddenly we noticed PALS were actually dying faster on the protocol..there were several reports of severe vomiting..which they would call herxing..it scared the heck out of Gary so he never tried it...as he had bulbar onset aspiration was a high risk..but on top of that the majority these PALS kept getting worse and worse...though a few claimed to get better..by 2004 almost all were deceased ..that particular Lyme group disbanned..as no one was around anymore..still as the years go by the stuff has recycled..and other groups have formed..
I don't know if Lyme may or may not be a potential "trigger" of ALS in some people ( nor insecticides, electric shock,mercury fillings and so forth) , but I do know there is not a single "legitimate " doctor I know that thinks the Igenex test is reliable..and I have yet to hear of one person with a "definite diagnosis of ALS" by an ALS specialist.. have their disease reversed with antibiotics .."nor do I beleve Lyme causes ALS" ..
I feel as many antibiotics as Gary ( although never for Lyme but has used most of the antiobiotics used for Lyme--for UTi's , bedsore infection, but primarily pneumonias) has been on and for long of periods of times... he'd be doing cartwheels if they were a cure ...as no joke there were times for awhile a couple of years ago ..when he finished a round and would have to go backagain (as early as 2 weeks later ) with yet another pneumonia. twice he never made it out of discharge from the hospital as the course of antibiotics was over.. but they kept him for other things ( impactions).. then a day or so before planned release they found he had yet another pneumonia and decided to keep him longer and run another course.....he primarily has pseudomonas colonies in his lungs from secretion aspiration, but has had staph, kliebeisella ( sp? ), Proteus Mirabillis ( sp? ), as well at times.. either in the lungs or in the form of a UTI..in three years he has only had two UTI's so we don't have near as much as a problem with those..as compared to the dozen episodes of pneumonias..
Gary has been on a list of antibiotics longer than my arm..I could not possibly type all he was given here for both gram positive and gram negative infections..,,he has developed a highly resistant strain of pseudomonas ( a highly mutating opportunistic gram negative bug )..due most likely to frequent aspiration of nasal drainage and long term antibiotic use..( it was neccessary though for him to have them all as he would not have survived this long without them)...but eventually he will most likely develop a strain that will be impossible to treat as his pseudomonas will become more and more resistant )..
That is why I am so adamant about the dangers of long term antibiotic usage..if you have an "active infection" ...you have to treat it..or you will not survive for long ..but to these people suggesting their usage based on unreliable tests..or when no infection is present...it scares the crap out of me..and I feel they are endangering the lives of PALS..because when PALS do really get an infection...from a bedsore, UTI or pneumonia..they will be up the creek without a paddle..due to antibiotic resistance...Lisa

PS>> I want to make it clear as well in no way shape or form do I think pseudomonas causes ALS. although Gary is colonized with it from standardized test from every legitimate hospital in town he has been too,,it was " secondary " to ALS...not the cause..I know this as pseudomonas is also quite common in Cystic Fibrosis and is the nymber one killer of people with that disease..but Cystic Fibrosis is (always hereditary from genetic mutations in genes and is inherited never sporadic ...so we know pseudomonas does not cause Cystic Fibrosis either...pseudomonas is a "secondary" bug that attacks compromised hosts.it can be fatal quickly if left untreated or if someone develops a strain so resistant it is impossible to treat .but pseudomonas does not cause ALS or any other diseases ..though it can cause fatal complications as a result of the infection and can colonize in an organ of the body ( such as the lungs where Gary colonizes it) ....pseudomonas can lead to severe pneumonias, sepsis, UTi's etc..depending on the site it attacks...or whether or not it gets into the bloodstream..Lisa

Posted by: Wayne - Tuesday, June 26, 2007 12:17:23 PM

Lisa,

I think you pointed out the fact even if someone is not intending to do harm (like the Lyme true believers) that they certainly CAN do harm even more so than a scammer who in my opinion are usually clever enough as to not give something potentially harmful so as not to draw the attention of the authorities. They just want the money.

So the message is beware of well-intentioned quacks and scammers.

Posted by: linda5 - Tuesday, June 26, 2007 12:25:43 PM

What gets me Wayne..is this woman admits she was never diagnosed with ALS...yet she is convinced she can cure PALS..ALS is easy to cure in someone that does not have it..
So her message seems to be to me don't listen to your "legitimate docs" if they say you have ALS ...you really don't have ALS ...you "all" have Lyme instead..
Yet no legitimate doc ever diagnosed her with ALS..to me she is herself a scammer.. well intententioned or not..Lisa

Posted by: Wayne - Tuesday, June 26, 2007 12:33:24 PM

Understood. I just was using a different definition of "scammer" as being someone who is selling a false product FOR the purpose of financial gain. I would use the word "quack" for someone that is well-intentioned but way off base.

However those are just my personal choices for what is really slang.

Posted by: linda5 - Tuesday, June 26, 2007 12:39:08 PM

[:)] Understood Wayne.. and if this woman suggests again that I or ( any CALS) want PALS to have a terminal illness instead of a treatable one....I can't promise I can hold my temper..as I might just bust a blood vessel over here..I'm trying to laugh instead as I too would perfer it ..but at times its hard..Lisa

Posted by: Jeff Schaffer - Tuesday, June 26, 2007 3:35:11 PM

Wayne, Im being as nice as I can. Im very well mannered and do not hardly ever speak my mind [ lol yeah , right] But telling me I want to have ALS is the straw that broke the camels back. Im taking in consideration the person is really believeing in her plight. But she just might convince someone to try this crap. I wouldnt want that. But me and Lisa will be nice. Just for you. lol..Ron

Quote:

quote:Originally posted by Wayne
Alright you two. Remember that even if some peoples ideas are completely wacky (most are IMO) or out of touch, they are still that persons ideas. It is possible to argue the idea without attacking the person. I would save the attacks for people who are intentionally trying to harm you (scam artists, crooks, etc..).

Posted by: jchexpress - Tuesday, June 26, 2007 3:52:35 PM

Sorry to interject here, but what PALS are looking for now are going to be tiny little blacklegged creatures or ticks that might be crawling around and create little itchies. When you find one of these little critters, please tweezer them out for relief of symptoms. There, much much better now.

Posted by: jmccarty - Tuesday, June 26, 2007 10:32:18 PM

I locked the account for the user going by the name Tailz. I think there is sufficient example on the forum already for the irrational nature of the posts from this person for any member of the ALS community to get a flavor for the senseless and capricious nature of these types of medical conspiracy theorists. In another way to phrase it- nothing new is being added and members of the community are rightly feeling insulted by the repeated insensitive content on disease causation, among other topics. And there is always the risk that someone new might actually believe some of this tripe.

John McCarty, PhD
Treatment Investigator,
ALS Therapy Development Institute

Posted by: Jeff Schaffer - Wednesday, June 27, 2007 8:08:45 AM

Thank you Dr. McCarty !!!!! I hate to see someone else go thru what many of us, myself included, have already done. Everyone needs a outlet when they are sick, but not at the expense of someone else who is suffering worse. ..Ron

Posted by: HELPmyDAUGHTER - Thursday, July 5, 2007 12:23:02 AM

HOw do I send a message or question to Sevierweather? This link seems to be a scam, or advertisement gimmick, as so many are. There are those of us who really need honesty and help.

Anyone?

Posted by: jmccarty - Thursday, July 5, 2007 7:11:20 AM

Sevierweather can allow emails through this site should he choose – I have no knowledge as to whether that email is active. Otherwise, it would not be clear which link you are referring to.

John McCarty, PhD
Treatment Investigator,
ALS Therapy Development Institute

Posted by: citytom - Saturday, July 14, 2007 12:49:15 AM

[quote]Originally posted by dbl30569
I'm a 41yo limb onset PALS dx'ed 07/05 possible & 07/06 definite & 10/06 (Mayo) definite. Mayo tested Lyme (ELISA? I didn't ask) - NEG.

01/07 IgeneX tests were IGg NEG & IGm POS. I have a Groshong cath & do IV Ceftriaxone for Lyme (not ALS <g>).

4 Neuro's have given me a 0% chance of remission or recovery. Other than a Rilutek Rx, they offer NOTHING of use to me. I may have Lyme, I might not - but at least I'm doing SOMETHING.[quote]

I also had an IgeneX test......$450. This was after I had a negative for lyme from Lab Corp of America; and another negative from Quest Labs. My alternative MD told me that the latter two labs don't go deep enough and give too many false negatives, and suggested IgeneX.
I went for it.
The results came back IGM negative, but IGG positive. However, my MD told me that the important one was IGM, and that IGG only shows that I had been, at one time in my life, exposed to Lyme. So at this point, I have stopped chasing any further identification of my disease as Lyme. Any comments?

Posted by: paqtec - Saturday, July 14, 2007 2:53:35 AM

I have heard of something called samento which some people use for Lyme disease. Apparently this is an herb (Latin name, Uncaria Tomentosa) which is also called 'cat's claw' or 'una de gato' or 'garabato amarillo.'

There is also an herbal protocol which consists of 4 herbs -- and samento is one; and another is cumanda, which they say comes from the bark of the "Campsiandra angustifolia tree found in the Amazon basin."

There is a lot of information about this on the internet. I have no personal or expanded knowledge beyond these bare facts. But it looks like a lot of people sell it, perhaps there are testimonals? And there is always the question of how to find reliable, verifiable testimonials. One abstract is at the bottom of this page.

There is something else to know about Lyme disease. Apparently it doesn't use iron the way that most bacteria do. 

Science 288 (5471): 1651
Lack of a Role for Iron in the Lyme Disease Pathogen
James E. Posey, Frank C. Gherardini

A fundamental tenet of microbial pathogenesis is that bacterial pathogens must overcome host iron limitation to establish a successful infection. Surprisingly, the Lyme disease pathogen Borrelia burgdorferi has bypassed this host defense by eliminating the need for iron.

B. burgdorferi grew normally and did not alter gene expression in the presence of iron chelators.

Furthermore, typical bacterial iron-containing proteins were not detected in cell lysates, nor were the genes encoding such proteins identified in the genome sequence.

The intracellular concentration of iron in B. burgdorferi was estimated to be less than 10 atoms per cell, well below a physiologically-relevant concentration.

- - - - - - - - - - - - - - - - - - - - - - - - - - - - -

An active ingredient of Cat's Claw water extracts
Yezhou Shenga, et al.
Optigenex, Inc., Giampapa Institute for Anti-Aging Medical Therapy

Abstract
Historic medicinal practice has defined Cat's Claw, also known as Una de Gato or Uncaria tomentosa, as an effective treatment for several health disorders including chronic inflammation, gastrointestinal dysfunction such as ulcers, tumors and infections.

The efficacy of Cat's Claw was originally believed, as early as the 1960s, to be due to the presence of oxindole alkaloids. However, more recently water-soluble Cat's Claw extracts were shown not to contain significant amounts of alkaloids (<0.05%), and yet still were shown to be very efficacious.

Here we characterize the active ingredients of a water-soluble Cat's Claw extract called C-Med-100 as inhibiting cell growth without cell death thus providing enhanced opportunities for DNA repair, and the consequences thereof, such as immune stimulation, anti-inflammation and cancer prevention.

Posted by: emi2007 - Friday, August 17, 2007 4:32:09 AM

I just posted on a completely unrelated discussion, where the following comment from "MrsBrisby111" was posted (http://commentisfree.guardian.co.uk/dean_baker_and_helene_jorgensen_/2007/08/bush_and_lyme_disease_whats_th.html ):

Here's the post:
"I have no experience with Lyme disease personally, but I would be very reluctant to trust any material published by the ILADS group, which you reference in your article. Dr. Gregory Bach, a lyme disease specialist (and not a real medical doctor, but a doctor of osteopathy), is one of the directors of ILADS and my family has had a truly horrifying experience with him.

One of my family members suspected he might have ALS (also called Lou Gehrig's Disease, or Motor Neuron Disease) and went to see Dr. Bach in Pennsylvania after seeing his name in a magazine article. He suspected he might have Lyme disease, instead of ALS. Dr. Bach was only too happy to encourage this idea. He put him on a long-term antibiotic regimen, telling him that it would be only a matter of time until he improved. He told him, "You will live to see your daughter grow up," (she was 2 years old at the time), and "You will get worse before you get better." He also gave him a number of unsubstantiated facts about Lyme disease: that it can be transmitted through semen and breast milk (so the patient's wife and daughter most definitely had it too, he wanted them also to begin treatment), and that ALS and other neurological diseases, like Multiple Sclerosis, simply did not exist--every case was a case of untreated Lyme disease.

His office is surrounded by guard dogs, he keeps a number of guns mounted on the walls, and our family member would be forced to wait for sometimes as long as 6 hours before seeing the doctor. When they expressed doubt about the treatment program (because he was just getting weaker and weaker), Dr. Bach said that they would have to remain positive, and if they didn't, he would most certainly not get better. What kind of medical advice is that? Dr. Bach also told him not to take Rilutek (the one drug that's been approved for treatment of ALS) saying, "That'll kill you." In reality, it probably would have extended his life.

After a year a half of visits, and over $20,000 spent, Dr. Bach one day sent them a letter (from his lawyer, of course) telling them that they should no longer contact the office, unless they wanted a lawsuit brought against them for harassment. My family member died two months ago, from ALS. He lived three years from the onset of symptoms. Dr. Bach wasted their time and money, and cruelest of all, he gave them false hope. Then, once it was obvious that my family member wasn't getting any better, he cut them off. He won't live to see his daughter grow up, as she is just three years old.

Oh, and if you have any question about Dr. Bach's political affiliations, please check out his website: http://www.drgregorybach.com. It features a lovely picture of him with President Bush, along with a link to the new website for the Lyme center he is building. He's accepting donations now, because I guess the $20,000 that he extracted from us wasn't enough to complete it. As I say, I am not familiar with the Lyme debate, but if this man can so obviously take advantage of sick people looking anywhere they can for a bit of hope, I don't think any information being published by his organization should be trusted."

Compare that to "Mike West Monroe"'s post earlier in this discussion:
"Every day, people with ALS are being taken advantage by unscrupulous or incompetent practitioners of all kinds. People need hope to go on living but usually the ones who are selling that hope are just frauds.

Sadly, Dr. Gregory Bach of Colmar, PA, although a licensed osteopath, is offering this kind of false hope to ALS Patients. His pattern is to say that what other doctors tell you is ALS is really lyme disease. He uses a lab in California, IGeneX, which has been investigated several times and which seems to always come up with a positive for lyme disease. When you get this IGeneX report, you feel you have hope again and Dr. Bach insists you come every 3 weeks (at $600 a visit) while he prescribes all kinds of antibiotics.

As you take these huge doses of antibiotics over a long period, you get sicker and sicker. Bach tells you, “you’ll get sicker before you get better.” So you continue to hope. “Stay away from other doctors,” he says. “Dont take rilutek,” he tells you. “That stuff will kill you.”

Then, when you are so disabled that you are an embarrassment in his waiting room, he has his lawyer send you a threatening letter telling you to stay away or face legal charges. This happens repeatedly but ALS patients are so depressed and weak by then that they, and their caregivers, don't fight back and expose him.

Does Bach do it just for the money or does he have a messiah complex? I don’t know. Maybe he can’t bear to admit that his antibiotics don’t cure ALS, so to save his own pride, he dumps you. Either way, he refuses to consult with other doctors or send you to someone who can help you. He doesn’t even give you a personal call. The nasty letter from his lawyer is all you get.

Bach claims that he is treating “hundreds of ALS patients.” He says, “I haven’t lost one of them.” That’s because he dumps them first. If he tells you about Tom Coffey or Dr. David Martz, who are ALS patients he claims to have cured, demand to meet them. I asked and was given a runaround, and I doubt if these two even exist. Seriously, if this Dr. Bach could cure ALS, wouldn’t he want the world to know?

Bach works in tandem with a Dr. Richard Rhee in Neptune NJ, who justifies the lyme diagnosis. Dr. Rhee is a neurologist and clearly knows that lyme has no connection to ALS. Bach is also connected with ILADS, a bogus lyme disease group that produces glossy promotional brochures, full of cheery anecdotes and no real facts, to fool desperate patients.

The last I heard, Dr. Bach is planning to use all the money he’s making to build a big “research center” – with him as the only researcher, I suppose.

I am looking for folks who will share their experiences with this Doctor, either by posting them or emailing me, so more people with ALS won’t be hurt.

Please email me mikewestmonroe@yahoo.com"

Then on 4/07, "Mike West Monroe" posted this on this list:

"Beloved husband, son, father, brother has died.

I feel it is best to maintain his anonymity to the end, since the last thing his survivors need now is legal harassment from Dr. Bach.

But now it is even clearer how Bach gets away with preying on ALS patients. The disease is so cruel, so unspeakably devastating, so completely exhausting to families that when it’s all over, no one has the energy or the will to make a public case against Bach.

Dr. Gregory Bach never once admitted he was wrong. After putting the patient through grueling six hour waits in his office, charging 600-1000 for a single session, and insisting on painful and totally unnecessary injections, he lacked the decency to even admit that it wasn’t working. Instead, as he grew sicker, Bach tried to build up guilt in the family, saying “if you’re not positive, he will die” and tried to sell his bogus treatments to other family members – as if ALS was contagious.

After taking 20,000 plus from an ordinary working family, he dismissed the dying man with a cold lawyer’s letter. He never called or spoke to him again.

I can remember Dr. Bach standing there bragging “I’ve had 200 ALS/lyme patients and I haven’t lost one.” No, he hasn’t lost any because he doesn’t stay around for their deaths. He sends them away feeling like fools, knowing that they wasted on him the few precious months of mobility and speech that remained to them. Or that they clung to false hopes and bogus miracle cures instead of discovering or strengthening a faith that could sustain them in the end.

In the last weeks our patient listened to the New Testament, and made it clear to us that that he forgave all those with whom he was still angry. It will take those of us whom he left behind a long time to attain that spirit of peace with which he ended his time on earth."

In the post on this list, the man is "the patient" and "our patient" and is spoken about as a third party not related to "Mike Monroe West". In the post on the Guardian, the poster seems to be a woman who writes as if she is closely related to the man. There may be a logical explanation, but it sure strikes me as if Mike Monroe West has an axe to grind and is honing his pitch.

I know nothing about Dr. Bach, the posts about him here do certainly make him sound strange, but ILADS is a legitimate organization with peer-reviewed published medical treatment guidelines. At least the doctors I know something about are legitimate, dedicated, sound physicians. Igenix laboratory is accredited by the state - and I believe they have been given extra scrutiny because of the negative press about them.

Everyone reading this should be aware that there is a pretty acrimonious debate raging now over Lyme disease, with some "interesting" characters on both sides. The founder of one of the leading Lyme groups (whose son died after a pretty grim existence) has been stalked by a leading detractor of Lyme treatment (who frequently posts under various pseudonyms on message boards), and a researcher on the other side claims to have been stalked by Lyme patients. I'm frankly wondering which of these posts on this thread is legitimate, even of the supposed Lyme patients. They sound a little strange to me, too, but they aren't representative of most Lyme patients, from what I've seen.

It's unfortunate if people manipulate information in such an important discussion, from whatever angle.

Posted by: jmccarty - Friday, August 17, 2007 11:06:55 AM

Emi2007 – what is your interest in ALS?

I’m asking because we get people that come occasionally to the forum here with no connection with ALS. Some are motivated to help constructively – that’s great; others, however come only to poke sticks around with ulterior motive. If you come to the forum because you are impacted or concerned about the disease, unfortunately like most here – then you are most welcome. Otherwise, if you have another agenda, please understand that you should not post more.

John McCarty, PhD
Treatment Investigator,
ALS Therapy Development Institute

Posted by: emi2007 - Friday, August 17, 2007 3:20:58 PM

Quote:

quote:Originally posted by jmccarty
Emi2007 – what is your interest in ALS?

I’m asking because we get people that come occasionally to the forum here with no connection with ALS. Some are motivated to help constructively – that’s great; others, however come only to poke sticks around with ulterior motive. If you come to the forum because you are impacted or concerned about the disease, unfortunately like most here – then you are most welcome. Otherwise, if you have another agenda, please understand that you should not post more.

John McCarty, PhD
Treatment Investigator,
ALS Therapy Development Institute

I found this forum because of the post I made on the unrelated discussion to which I gave a link above. I posted out of the same concern over MWM's posts that you have just expressed over mine. I have had more contact with Lyme disease among friends and family than I could wish on anyone, including misdiagnosis as more serious conditions (more MS and Parkinson's than ALS, though). A number of people close to me have suffered (and unfortunately in more than one case, died) from neurological disorders including MSA's - a doctor told me it would be rare for anyone to know even one person with those conditions, much less more. I am very interested in knowing how much of a problem misdiagnosis of Lyme as ALS is, and I am concerned about the spread of misinformation about Lyme. As other posters have said, it's unfair to people with ALS if they are given either false hope or misinformation that prevents them from getting an answer if they are misdiagnosed with ALS. I am very, very interested in the issue of how to prevent people with Lyme from being misdiagnosed so long that they develop such serious symptomology, thus interested in understanding the experience of people with ALS who consider Lyme.

If that is an unwelcome agenda, then I respect your list guidelines and will not post anymore. I'm not sure I have much else useful to say -- mostly I wanted to make people aware of the crazy state of Lyme discussions, people do come to those with agendas, and I'm not sure the previous discussion here is without those.

Posted by: ATB - Saturday, August 18, 2007 2:38:30 AM

Dear Mike, et al...

I came across this forum and post tonight while doing additional research for a patient who was recently diagnosed with ALS prior to learning they actually had Lyme disease and coinfections.

This patient is one of more than at least 200 people who have contacted me over the past few years who were told they had ALS after being exposed to ticks in Lyme endemic areas. A number of these patients came to me several years back from clinical trials for ALS which were being conducted at some well known universities. The patients or their families were not convinced the problems (symptoms) were actually stemming from ALS and had suspected it might be from Lyme disease and had contacted me for more tick borne disease information.

Since there seems to be some questions about the ALS/Lyme connection, I thought I'd register here and share some information that may assist some of the people reading or posting here.

Since it is late and I am in the middle of several projects, please excuse the informal presentation of the information below. I am not able to write up much at the moment but will be happy to answer questions which may arise from my post.

Mike, you asked about Tom Coffey and didn't know anyone who had met him. I have had the pleasure of meeting Tom, have learned about his situation and watched his progress unfold.

Tom was originally diagnosed with ALS by several doctors at top universities. He had digressed to the point he was wheelchair bound, unable to sit up without restraints, had severe ALS symptoms and had a feeding tube. He was unable to speak or hold his head upright by the time his family took him to a doctor who works with people in the advanced stages of Lyme disease. His original doctors told the family there was nothing that could be done for Tom at that time.

When Tom first arrived at the Lyme doctor's office he had recently been sent home (from Johns Hopkins I believe) with approximately 2 weeks to live. Suspecting Lyme disease was the reason Tom's health had originally declined, his family wheeled him into the doctors office where he was given an exam and a history was taken. His doctor admitted there was little hope and was fairly sure nothing could be done to help him.

But he was tested for Lyme and tick borne coinfections and other conditions at the families request and the blood was sent out to various labs. Tom was sent home with a clinical diagnosis of Lyme disease due to his history and symptoms after being given an injection of antibiotics for the condition and the family was told not to expect much due to the advanced stages Tom had reached by then.

Surprisingly, he showed up at the 2 week follow up appointment. His test results had not come back at that point so he was given another injection and sent home.

By the way, Igenex Lab, the one some claim has "too many positive results" (rumors spread to discredit the competition for financial reasons, to discredit labs which could prove an improper original diagnosis and jeopardize physicians licenses and reputations who misdiagnosed patients) actually has a more specific test than other labs due to the fact it is able to detect more than one strain of Borrelia. Unlike the standard commercial labs which are often used and approved by insurance companies due to the cheaper prices and political reasons, Igenex tests detect exposure to both Borrelia burgdorferi (Lyme) and the more recently discovered Borrelia lonestari (STARI or Master's Disease). Since there are over 300 known strains of Borrelia that are missed by all commercial tests, Igenex is more accurate than most but it is not able to detect all strains of Borrelia or all cases of Lyme or Lyme-like diseases.

Back to Tom-

Eventually Tom's lab results arrived confirming the diagnosis and I honestly can't remember what co-infections were present so I won't speculate about them now. The doctor continued the treatment and Tom started to slowly improve after going through a time period where his symptoms were worse (typical with people infected by spirochetal bacteria such as Lyme- called a Herxheimer reaction).

All of this was documented in records and luckily on film, which I have seen. Tom made progress slowly but as expected due to the advanced condition.

Fast forward (sorry I am fading here)... Tom eventually was able to speak, walk and actually returned to his old job (and he looked so good at that time it still brings tears to my eyes to think about it). A while later I heard Tom and his wife were expecting a baby and starting a family.

Anyhow.. I also have had the pleasure to meet Dr. David Martz at a Lyme disease conference when he made the decision to return to work as a doctor due to the improvement he showed. He specialized in helping patients with Lyme disease because he wanted no one else to go through what he went through. He has helped countless numbers of patients and from what I hear back his patients think the world of him.

Most doctors who have made it their mission to work with Lyme patients (and they are hard to help due to the complexities of the disease organism and coinfections and effects on the immune system) either had Lyme and/or had family members an/or friends, or many patients who were suffering from it.

The ILADS group mentioned, many of the doctors I've met personally and have known for years, is a growing group of professionals who all have experienced the devastating affects the Lyme spirochete can have on humans. I've never seen a more kind, caring and dedicated group of people anywhere who are determined to help patients in spite of the risks to them. They are, unfortunately, being attacked by those who would prefer not to be exposed after misdiagnosing so many patients, those who have vested interests in tests, vaccines, etc. and those who have failed to keep up with the latest research and advancements.

As for Dr. Harris being involved with ILADS, he is very much so. Years ago he wasn't specializing in Lyme disease until he found out his child was sick and no one had any answers. He, as a concerned father, developed those tests in order to help diagnose his child and friends who were sick with some sort of unknown illness. From the efforts to help his family, Igenex and their superior tests were developed.

Today, after recovering from Lyme disease, his child is now doing the pay back for having his life saved and has become a physician dedicated to helping others with Lyme disease.

Points to consider:

Up to 90 percent of people infected with Lyme disease are missed using standard tests. In Maryland for example, over two million dollars are spent each year on these inaccurate tests.

Lou Gehrig- check to see where he spent much of his time and I believe you will note it was in and around Lyme, CT... where Lyme disease was found and eventually named. He also was a ball player who spent many years playing outdoors in the grass.. in tick country.

Lyme disease .. although only recently named... has been around for years. In NY, especially the Long Island area, it was often called "Montauck knee" (spelling?). The spirochete has been found to be millions of years old. Proof of its existence has been documented inside a termite that was fossilized in amber 20 million years ago.

Less than 50 percent of Lyme patients recall a tick bite and less than 50 percent develop a classic rash.

Lyme has been misdiagnosed as many other conditions because the spirochete can enter any and all tissues, organs, blood, spinal fluid, nerves, heart, eyes, bladder, joints and muscles... as well as the brain.

Doctors who treat Lyme patients often can't accept insurance because they are under fire from every direction due to the nature of what they are doing to help others... which is going outside the restrictive bounderies set by those with interests in the outcome. By doing what they do (treating until patients are better rather than being hog tied to a "cost-effective" medication regime) they rattle many cages (unintentionaly) and must continually fight to keep their doors open.

Once treated for Lyme- keeping in mind there is no known universal cure and no treatment protocol has ever been effective in curing all patients- people can remain infected and symptoms can remit for years before they resurface.

I am sorry.. I could chat forever but am barely seeing the keys at the moment as I am so tired.

If anyone would like to learn more, please feel free to contact me. I get 50-80 requests a day for help, so please write ALS in the email title and give me time to respond if you will. I'll do the best I can to help.

Good luck and bless you all.

AfterTheBite@hotmail.com

Posted by: Meg1 - Saturday, August 18, 2007 10:23:01 AM

I think this is a good place to point out something that only long-time PALS are in a position to know. This it's-not-ALS-it's-really-Lyme is not a new theory. It's been popping up for years and so-called Lyme-literate docs have been taking advantage of PALS's desperation since at least the early 90's. Controlled studies have shown no benefit to the lyme protocol for reliably diagnosed (i.e., at an ALS center) PALS and, in fact, several have indicated that long-term antibiotics have life-shortening effects on ALS patients. While some people promoting this "it's really Lyme--I can save your life!!!!" thing are well-meaning, others are not.

Posted by: Debbie - Saturday, August 18, 2007 11:05:27 PM

I was a patient of Dr. Martz, who genuinely is a great, compassionate man. I was on a combination of IV and oral abx for over two years. My symptoms never abated and I am worse than when I started. I do not regret using the abx; I tested positive for Lyme and co-infections from two different labs. Dr. Martz has always maintained that my dx is PLS caused by Lyme. I live in NJ, have spent the past 10 yrs on soccer and baseball fields, and have hiked in many states so a Lyme dx was not unreasonable.
Debbie

Posted by: linda5 - Sunday, August 19, 2007 1:51:39 AM

Hi Debbie,
Thanks for sharing your experiences the lyme thing unfortunately has been around since 2000 with Dr. Bach..
Dr. Martz I believe is the one that was in Colorado that just got shutdown..the ALSA cordinator informed me about this in July of this year.I can say watching over 300 people pass away on the boards through Lyme protocols in the past , I was glad to hear it.
Sometimes these guys that offer these treatments can appear very nice and compassionate..they may very well convince themselves that they are helping some people with ALS and doing the right thing ...as this disease progresses at various rates anyway in wide ranges from individual to individual...they may truly feel they have some successes..
But nontheless they are charging PALS for an unproven and sometimes dangerous treatment..
I'm glad you stopped the treatment...after you felt it was not working...and am glad you were spared of some of the horrible side effects others had..
How are you doing I have not seen you posting in awhile? ..Lisa

Posted by: Debbie - Sunday, August 19, 2007 3:43:36 PM

Hi Lisa,
It has been a hectic summer. Now that HS soccer has begun, I will be home more. Dr. Martz closed his practice as of July 31 due to health issues; he had 3 heart attacks in the past 2 years. He himself was diagnosed with ALS by drs. in CO but was one of the very few who was truly Lyme infected. He was invited to speak at a group of infectious disease drs. here in NY. He is by no means to be equated with Bach in PA, who sounds awful. Actually Dr. Martz was less expensive by a lot than any neuro or internist here in the NY area. He sent me to a neuro out in CO as well who concurred with the PLS dx. Anyway Bill and I decided that I should stop the abx; we have seen no difference and I am finally PICC free. Has school started by you yet? We are college hunting for my oldest -- he wants to stay within a 3-4 hr or less radius which is fine by us. He is looking at Villanova and Georgetown (be still my heart 40K+!) and also Rutgers and The College of NJ which are half that. But, he is a bright boy so whatever he chooses, we will manage. Gary sounds like he is doing well and I am truly happy to hear it. Since we live outside NYC and have news personalities in town and nearby, I am trying to convince people to do a story on how devastating ALS is. I personally know of 3 other people within 5 miles who have either ALS or PLS. Sorry for rambling and going off topic but I just feel like talking! LOL! Debbie

Posted by: linda5 - Sunday, August 19, 2007 3:52:48 PM

Hi Debbie..
School starrted here for our youngest August 13 th..
Our oldest finished her summer courses in college August 15 and has a week or two break from classes ..she's in a hurry to get her degree..
Glad to hear you are doing well and hanging inthere..looks like you have been kept pretty busy..good luck on the college hunting and I am sure you will find one that she likes..
RE--Dr. Martz.
I think alot of these people that offer these therapies, truly feel they are helping people, it is easy to believe it-- we even convince ourselves from time to time something helps--but when it does not help others it could be coincidence in a fe --and some experiences can be quite harmful--
Anyway regardless I think some of these guys that offer therapies fallinto some ofthe same traps PALS do..
Hope to see you post again soon..and enjoy the rest of your summer..

Posted by: Meg1 - Sunday, August 19, 2007 6:55:32 PM

Dr. Martz's story seems to change as time passes. Back when he was originally diagnosed with lyme, the news stories made clear that he had never actually been diagnosed with ALS. His intitial symptoms were nothing like ALS symptoms--he had suffered an acute flu-like illness and was hospitalized for weeks while he underwent tests. Although the Lymie organizations, in their breathless press releases, identified him as someone who was diagnosed with ALS but who really had lyme, Martz was very careful never to be quoted saying he actually had had an ALS diagnosis. He said (as did others here later who knew his story) that ALS was just one of several theories presented during the diagnostic process, as doctors examined and tested him and couldn't find a medical explanation for his symptoms. I've read more recently that he is claiming to have been diagnosed with ALS but that is not what he was saying originally and I've never read anything to indicate who made that supposed diagnosis.

But, hey, it makes a good story, doesn't it?

Posted by: Debbie - Sunday, August 19, 2007 9:47:46 PM

Hi Meg,
FYI. This is a paper that Dr. Martz presented at a conference last October. He was diagnosed as having ALS and in newspaper interviews confirmed it. I am not going to belabor the point but he is not a con man nor a quack. Debbie
http://www.dreamdoctor.com/radio/ALS%20and%20Lyme.pdf

Posted by: dbl30569 - Monday, August 20, 2007 1:17:45 AM

Motor neuron disease recovery associated with IV ceftriaxone and anti-Babesia therapy.Harvey WT, Martz D.
Rocky Mountain Chronic Disease Specialists, L.L.C., North Circle Drive, Colorado Springs, CO 80909, USA. wth928@aol.com

This report summarizes what we believe to be the first verifiable case of a significant and progressive motor neuron disease (MND) consistent with amyotrophic lateral sclerosis that resolved during treatment with i.v. ceftriaxone plus oral atovaquone and mefloquine. The rationale for use of these antibiotics was (i) positive testing for Borrelia burgdorferi and (ii) red blood cell ring forms consistent with Babesia species infection. The patient has continued to be free of MND signs and symptoms for 15 months, although some symptoms consistent with disseminated Borreliosis remain.

PMID: 17212618 [PubMed - indexed for MEDLINE]

http://www.alsa-stl.org/storyimages/1041999354512f5b0b71f0.pdf

I pursued Treatment (for Bb & coinfections) by Dr. M for 6 months. Although my neurological deterioration continues, I believe Dr. M cares about his patients. I did not experience any "care" from 4 neurologists prior.

Don

Posted by: Meg1 - Monday, August 20, 2007 10:49:45 AM

Quote:

quote:Originally posted by Debbie
Hi Meg,
FYI. This is a paper that Dr. Martz presented at a conference last October. He was diagnosed as having ALS and in newspaper interviews confirmed it. I am not going to belabor the point but he is not a con man nor a quack. Debbie
http://www.dreamdoctor.com/radio/ALS%20and%20Lyme.pdf

Yes, that's what I said. It took Martz a few years to begin making the claim that he had actually been diagnosed with ALS. The physician whose statement Martz uses to support his diagnosis (from your link) is, strangely, a pediatric neurologist and he doesn't say Martz was diagnosed with ALS--only that his clinical symptoms support an ALS diagnosis. He makes no mention of an EMG or El escorial criteria which are, of course, required for an actual ALS diagnosis. I don't think he ever had one--at least from anyone qualified to give it.

Posted by: dbl30569 - Monday, August 20, 2007 11:18:06 AM

Meg,

Who cares? Whatever Dr. M. had, I took a chance that I had the same thing. It didn't pan out. At least I tried something.

There are some here that are more hellbent on discrediting treatment than offering useful suggestions. Please - someone - give me a useful suggestion.

FDA/AMA directed medicine does not offer any at this time, although I continue to research.

Don

Posted by: Wayne - Monday, August 20, 2007 11:27:16 AM

Perhaps Meg1 is just "hellbent" on putting out an accurate assessment of the current situation. She is knowledgeable like many here of the wild goose chases that PALS have gone through time and again. Many of them are not just benign but are emotionally physically and financially exhausting. Wouldn't you want someone with experience warning you about such thing?

On the other hand, if Meg1 or myself had information concerning a real promising treatment offered by actual researchers I'm sure that she would be happy to pass that information as well. The problem is, the lack of having that information not a desire to "not tell it".

Posted by: dbl30569 - Monday, August 20, 2007 12:21:54 PM

I premise this with hindsight is 20-20, I did what I thought was best at the time.

"emotionally exhausting": pursuing the AMA neurological route and being told by 4 guys with white coats and diplomas that they have nothing to offer, here's the bill, go home and update your will.

"financially exhausting": my Mayo Clinic charges for 3 partial days of testing and diagnosis exceeded $25,000, of which I paid $5,000. No treatment was offered.

This was my experience, Don

Posted by: Wayne - Monday, August 20, 2007 12:30:36 PM

As it was for myself as well. Been there done that. Now does that mean that PALS shouldn't be warned when chasing red herrings? Is it really a either/or situation meaning is it really either listen to the "establishment" which gives no hope OR listen to the quacks who somehow will?

Unfortunately as has been the experience of many here including myself, its likely to be a lose-lose situation. First a PALS has to go through the regular ALS/neuro diagnosis process. Then many PALS will go through the ringer of the quacks and drain their savings and have their hopes dashed again. Is that "better".

So the question becomes, do you want someone to tell you what you want to hear, or for PALS to relate their actual experience, the good, the bad and the ugly?

Posted by: tarzinski - Tuesday, August 28, 2007 10:37:29 PM

My husband Jon Davis was diagnosed with ALS in 2002. Thank God we found out about lyme disease from Dr. Bach. Listen up all you people. Jon was 3.5 years of just lower bulbar symptoms, but our family Dr. put Jon on lipitor. It spread the ALS/Lyme like wild fire into his upper body and lungs. He is now on a vent and paralyzed. But let me tell you all something. At his worst he was 109lbs, he couldn't move a muscle, swallow, he was next to death. He even coded in our house and was rushed to the hospital and spent 2 weeks in the ICU. He was in a drug induced coma to get over the double pneumonia - so he could get strong enough to get a trach. He is now 175lbs, can talk on and off the vent, eating food, swallowing pills, can moved his fingers and toes. He can push a little bit now with his legs and can isolate his inner thigh muscle to move his legs. He can push downward with his arms. He has head control while sitting in the wheelchair. Listen up. With ALS you never get anything back. You want to know why ? Because when you do nothing you die. Treating lyme disease that has manifested into ALS is very tricky and even with that you can still die. Some people can get worse when they start taking the antibiotics. Even some natural supplements and reasonable sounding safe treatments can accelerate the symptoms. It is a crap shoot. Do you what to know why ? Because this is not all bacteria. It is a host of all sorts of pathogens. Don't blame lyme Dr's, that can't think outside of the box, because they are controlled by the government, FDA and AMA. Think about it. 60+ years and billions of dollars on ALS research and nothing. But by the grace of GOD and his guidance we are making process with this disease. It's not rocket science here. Kill the pathogens, cleanse them out, build up the body and repeat. I don't want to read posts on his board that talk like my husbands battle is a failure. It is a success story. He has a long way to go and it is GOD's will for a course of action. Lyme disease that manifests into ALS is not going to be treated by antibiotics alone. Antibiotics alone will probably kill you. Remember the pathogens in body feed off of you, destroy or mutate your DNA. It's deadly stuff and some people don't make it. I was almost hanged during an ALS support meeting when I told people to not be afraid to get a feeding tube, or to be afraid of a vent. Use them as tools to help your body fight this disease. What makes you think that lyme disease is any less deadly than AIDS. With a proper protocol and several years, the pathogens do die off and the body can start to repair itself. The trick is to stay alive. I have caught hell from people who don't want to live like this. So all I have to say is that everyone has free will. Even a healthy person can get into a car to drive to work and come home 6 months later in the same shape as my husband ( paralyzed and on a vent ) from a car accident. The true purpose of this post is to give you hope and to realize that lyme Dr's are trying the best they can with their hands being tied as to what they are suggest as treatments. If you are told you have ALS or lyme disease my suggestion to you is to become very proactive and take responsibility from your own health. Read, research, and learn.

nancy davis

Posted by: cureals - Tuesday, September 18, 2007 3:59:44 PM

The ALS Association’s National Call for a Cure
Call Your Senators Tomorrow
Wednesday, September 19, 2007
Tomorrow, September 19, The ALS Association is launching National Call for a Cure, a day-long grassroots blitz to Capitol Hill. Tomorrow, we are asking the entire ALS community - PALS, families and advocates from across the country – to call their US Senators and urge them to cosponsor the ALS Registry Act and join our fight for a treatment and cure. Even if your Senators already have cosponsored the ALS Registry Act, it's still important that you call. There's more your Senators can do!
Forty-five Senators have cosponsored the ALS Registry Act – just six short of a majority! Your participation in the National Call for a Cure is urgently needed to build additional support for the bill and help pass it into law this year! Importantly, your participation also will to continue to raise awareness of ALS on Capitol Hill.
The National Call for a Cure is your opportunity to tell the Senate that much more must be done to find a treatment and cure. Together we can make a difference!
Please forward this e-mail to your entire address book – to your friends, family, colleagues and others whose lives have been touched by the disease, and ask them to set aside time tomorrow to call their Senators. We want as many people as possible to participate in the National Call for a Cure – so please spread the word!
Detailed instructions, including contact information and a script you can use are available here. The website will automatically generate the appropriate talking points and contact information for your Senators after you enter your zip code. For PALS whose disease has robbed them of the ability to speak, participate in the National Call for a Cure by emailing your Senators.
Again, this is our opportunity to deliver a loud and clear message to the U.S. Senate: Join our fight today.
Are you an ALSA Advocate? Click here to receive legislative updates and action alerts!
Questions? Contact Kim Hymes, The ALS Association via phone (202)638-6997, Toll-free 1-877-444-ALSA or via email khymes@alsa-national.org.

Posted by: Ivan Travnicek - Tuesday, September 18, 2007 8:12:42 PM

Reply to Nancy Davis, aka Tarzinski:

I like your positive attitude. There is so much hopelessness hidden in the words of those who post on this thread and others. Alternative therapies may prolong the life of an ALS patient. If nothing else alternative therapies provide hope. Hope may buy time. And fighting for time while a magical little liver pill comes along is what it's all about. . . .

Ivan

Posted by: baron357 - Wednesday, September 19, 2007 12:31:14 AM

Hello everyone,

My husband was seen by Dr. Bach for 18 months. I will not repeat all the nasty things about the good Dr except to say they are all true. I do believe, as did my husband that Bach helps people with true Lyme, but I am sure that he mislead us. There was a point at which he knew we were dealing with ALS and he kept taking our money and lying to us. So many of the postings on here are familiar to me; the crazy waiting room, long wait time, grueling antibiotic treatments. One thing that had not occurred to me was that the months of antibiotics may have shortened my husband's life. This idea is so repulsive to me that I am tempted to renew my old anger at Mr Bach. My husband died 5 months ago just 2 months shy of his 39th birthday.

Posted by: baron357 - Wednesday, September 19, 2007 12:32:53 AM

Posted by: Sunnyday - Saturday, August 2, 2008 6:45:18 PM

For those who are interested, there is a new documentary on Lyme disease that also touches on the subject of ALS. The documentary called "Under Our Skin" was produced by Emmy-nominated Andy Abrahams Wilson and it premiered this year at the Tribeca Film Festival in New York City. An individual copy can be ordered through the website of Open Eye Pictures at www.openeye.com. It is well worth the money to see this film if you are facing any of these diagnoses.

It is important to know that there are many false negative blood tests for Lyme disease. The blood tests are unreliable. And, contrary to some uninformed opinions expressed above,yes, IGenex is a reputable lab.

One of the reasons there are many false negative tests is that the blood tests are build around one strain of the organism (Borrelia burgdorferi). Typically, strain B31. In fact, there are many different strains of the organism, and the antigens on their surface will be different than B31. It is known that there are different forms of Borrelia in different parts of the U.S. ---- yet the doctors use tests that only encompass B31! This is ridiculous, and it causes untold heartache and misery for people who cannot get properly diagnosed. Unfortunately, Lyme disease is still a clinical diagnosis. The diagnosis cannot be made solely on laboratory test results.

Another important thing to know is that the Connecticut Attorney General, William Blumenthal is investigating the Infectious Diseases Society of America (IDSA) for their failure to monitor conflicts of interest among those physicians/scientists who wrote the Lyme disease guidelines. This is the "mainstream" group of doctors. However, they fail to reveal that they are working with pharmaceutical companies on vaccines, some have patents on Lyme disease antigens that can be used in test kits and in vaccines, etc. They do not speak the truth about Lyme disease because they want to market a vaccine for the disease.

For example, they claim that they can tell with a simple blood test who has the disease. This is false. However, they want other doctors to believe this because otherwise the doctors associated with the IDSA guidelines could not do the vaccine clinical trials with the pharmaceutical companies ---- you wouldn't be able to tell if the vaccine was successful or not because you wouldn't be able to tell who has the disease, and who doesn't. So, they just make it up. They see, yes WE can tell who has the disease. Nonsense.

There is much more that could be said, but what you will find is that the IDSA guidelines on Lyme disease are twisted to obscure the scientific obstacles that they have not solved --- that MUST be solved -- before testing any vaccine. Instead, what you see is a tight clique of research-oriented (not patient-oriented) docs who ignore the world literature on this disease and simply quote each other.

It's a serious scandal. The Connecticut Attorney General is investigating the group for antitrust violations, stating that their guidelines limit consumer choice. Further information can be found on the website for the Connecticut Attorney General.

While some complain that the "Lyme quacks" bill patients exorbitant sums for diagnosis and treatment, there is another side to the story. There are "mainstream" so-called "Lyme experts" that refuse to declare their financial conflicts of interests --- and it is millions of dollars that are at stake here. Greed is an unfortunate human quality. If you are curious go to the patent website at www.uspto.gov, and search "Borrelia." It will bring up hundreds of patents on the Lyme disease organism. Successfully commercializing just one of these patents could be worth huge sums. That is what the "Lyme wars" are about. Honest physicians, scientists, and suffering patients fighting the tidal wave of commercial interests in this disease that have corrupted "mainstream" medicine.

It is sad that we cannot rely on our fellow human beings to do the right thing, particularly when people are suffering. Willy Burgdorfer, Phd, the discover of Lyme disease said it best: "“The controversy in Lyme disease is a shameful affair because the whole thing is politically tainted. Money goes to people that have for the past thirty years produced the same thing ---- nothing.” (quote from "Under Our Skin")

Posted by: hennolito - Sunday, August 3, 2008 2:51:27 AM

hello everybody
about what i saw and what people (doctors) saw and do for a ALS-symtom treatment, there is alltimes borrelia coinvolved and the heavymetalls.

i am normaly living in germany, but now for a few weeks in seattle/washington.
here is an ALS patient of dr. klinghardt who i met last day´s.
he did improvments and told me that he thinks as me:
"ALS" are symtoms but not a "sickness".
i asked him if he will come in to this forum to write to you guys about his treatment and improvments.
i will see him again on monday and tell him to bring it over in a short story, ok?

dr. martin atkinson - barr has had 150 ALS patients and "all" of them had reaction on borrelia.

check it out, because it is a way not to think this is a onewaystory.

god night and hope for all of you
renzo

Posted by: concernedscience - Tuesday, January 20, 2009 9:24:56 PM

I am very sorry for your loss. I think it is important that you are aware that many disparate research organizations are finding that ALS is not only related to Lyme Disease, but is actually Lyme Disease. It may help for you to get up to date on the new conclusions that are coming out from both the scientific and medical communities. It may help you come to terms with your very sad experience and terrible loss. I am concerned that others will not seek the proper treatment for what may be Lyme and end up getting more sick because they are not seeking all options for truth.

Please read below.

May you find peace.

ILADS WELCOMES PHYSICIAN RECOVERING FROM ALS
DOCTOR'S CASE SUPPORTS THEORY LYME DISEASE MAY BE THE CAUSE OF ALS
Bethesda MD September 2, 2004 - The International Lyme and Associated Diseases Society (ILADS) strengthened its impressive membership today with the addition of Dr. Dave Martz of Colorado Springs, who joined ILADS 15 months after being diagnosed with Amyotrophic Lateral Sclerosis (ALS). In April of 2003, Dr. Martz began suffering weakness and pain in his muscles. Dr. Martz soon lost much of his mobility. His condition worsened forcing him to retire from the medical practice he loves.

After six frustrating months with hope fading, Dr. Martz discovered the work of Dr. Gregory Bach of Colmar, Pennsylvania. Dr. Bach, who is a member of ILADS, suggested a link between ALS and Lyme disease. IGeneX Reference Laboratory of Palo Alto then confirmed Lyme bacteria in Dr. Martz. Dr. Martz then sought out a local ILADS physician who started Lyme disease treatment based on the recommendations of Dr. Bach. The results were dramatic.

"Before I found Lyme "literate" professionals, I could only function at a level of about 20 percent," says Dr. Martz. "But now that I'm in expert hands, I am up to 75 percent of full function and I hope to return to work soon as a physician, helping others with Chronic Lyme Disease." An internist, and Past President of the Colorado Medical Society, he is committed to giving others opportunities that have been given to him.

The Centers for Disease Controls says that Lyme disease may be under-reported by as much as ten-fold. This means as many as a quarter of a million Americans may contract Lyme disease each year, yet most of them are unaware of it. ILADS will hold its annual meeting in October of this year in Rye, New York.

ILADS president, Dr. Steven Phillips, says, "Dr. Martz is an example of the many physicians and medical experts we encourage to join ILADS so we can continue to raise awareness and make vital advances in the world-wide fight against Lyme disease."

For more information about Lyme disease go to www.ilads.org CONTACT :
Barbara Buchman (301) 263-1080
Christi O'Connor (415) 883-2491

Posted by: jmccarty - Wednesday, January 21, 2009 12:03:50 PM

I am aware of no reliable research organization anywhere that is drawing a significant link between Lyme disease and ALS. Anyone who would claim such should be prepared to present reasonable documentation – otherwise it should be regarded as unsubstantiated rumor.

The evidence that I have seen to date would be consistent with that there is little overlap beyond coincidence – consistent with the opinion posted at a top Lyme research center at Columbia University:

http://chaos.cpmc.columbia.edu/nyspi/askthedr/for_Pt/displayanswer1-lyme.asp?Departments=LymeDisease&Controlnumber=2263

Is it possible for Lyme disease to be misdiagnosed as ALS? Are there similarities in symptoms between these two diseases?
The question of a relationship between Lyme Disease and ALS first received significant academic attention when Dr. John Halpern who was then a neurologist at Stony Brook conducted a study in which he compared the frequency of blood test positivity to the agent of Lyme disease among patients with ALS to community controls. The results indicated a higher percentage of the ALS patients were seropositive for Lyme Disease. Since then, there have been isolated case reports both in the media and one or two in the academic literature indicating that a patient had been misdiagnosed with an ALS-like illness only later to be rediagosed and treated for Lyme disease with good clinical response. Although we suspect that there may be rare individuals for whom such a relationship does exist, the vast majority of patients with ALS are not thought to have Lyme disease as the cause of their serious disease. Clinical trials have been underway using antibiotics for ALS (such as minocycline or ceftriaxone) not because there is belief that ALS is caused by a microbe but because these antimicrobial agents have other properties as well, such as decreasing inflammation or decreasing glutamatergic excitotoxicity.

John McCarty, PhD
Treatment Investigator,
ALS Therapy Development Institute

Posted by: Neph - Wednesday, January 21, 2009 12:41:59 PM

If you take 150 ALS patients at random and all of those 150 patients show positive results with regard to borrelia tests, would you call this a funny coincidence? Just because scientists nowadays simply refuse to face the fact that there are more bacteria than they would like to be around that doesn't mean that that's the truth.
And I really do not see the point why people who want to help are being bashed. You do not have to take antibiotics to get rid of bacteria, there are other, really effective treatments now and no, they are not that expensive.

Posted by: jmccarty - Wednesday, January 21, 2009 12:57:48 PM

I certainly would know of no documented effective means to eliminate such cryptic bacteria without chemical antibiotics.

The interest on this forum is to host, as much as possible, factual content – we certainly encourage such and are very tolerant of a variety of points of view. However, simple provocative statements without any collaborative information (references, links, expert opinions, etc) contributes nothing useful to this forum and such posts will often be discouraged by myself or other forum members.

In particular, Lyme disease as it potentially relates to ALS is a well trodden subject and we have had to deal with special interests on this topic for as long as I have moderated the forum. The forum is about ALS, not Lyme – and therefore Lyme disease is only of interest as it pertains to ALS. Which is minimally. There may be cases where it appears Lyme is misdiagnosed as ALS – I’m aware of only one clear example and that has been documented on this forum.

John McCarty, PhD
Treatment Investigator,
ALS Therapy Development Institute

Posted by: Neph - Wednesday, January 21, 2009 1:21:55 PM

Dr M, I am sure you are aware of the results that Dr Atkinson-Barr came up with, because the results have been posted here, you just have to search here... maybe they were ignored, but they were definitely posted here and can also be found on the net.
Since no one really knows what causes ALS, how can bacteria be ruled out?
BTW, Atkinson-Barr tested 150 PALS, i.e. real human beings suffering from ALS, so from a scientific point of view those results are definitely more realiable than anything else.

Posted by: jmccarty - Wednesday, January 21, 2009 2:07:32 PM

I presume you are basing your figure on this post:
http://www.als.net/forum/topic.asp?TOPIC_ID=2181

I have never found or seen any significant substantiation or independent validation of such claims. Furthermore, such a claim that 150/150 would strongly suggest a systematic error that is generating false positives. That’s old stuff (1999) and given the lack of follow-up there would seem no reason to assume validity in such. Furthermore, based on such claims at the time – many PALS then and since have been taken for the ride of aggressive antibiotic therapy assuming the theory of a direct bacterial cause of ALS progression. Some of their unfortunate stories can be read on these forum pages.

John McCarty, PhD
Treatment Investigator,
ALS Therapy Development Institute

Posted by: aeg - Wednesday, January 21, 2009 5:08:43 PM

Forum Readers,

The key issue here is what is applicable for current PALS. It likely really does not matter if LYME is a trigger for MND pathology or not. What matters is that the proposed treatment of heavy doses of antibiotics does more harm than good. This whole herxheimer reaction argument is pointless for PALS or MND sufferers because even if it was happening a patient inflicted with MND deteriorates faster and never recovers using this treatment. I personally took antibiotics for an illness a while back and my fasciculations and cramping went absolutely wild. I began to deteriorate more quickly as well. Everything went back to normal except for the lost function when I got off the antibiotics. Along with the negative results in the Minocycline trial I am convinced that ramping up the immune system in patients with MND is a very bad idea. I certainly think it is plausible that long term LYME which has penetrated the CNS could be one of the many environmental triggers that can cause MND to initiate. (I have tested positive for Lyme using a variety of tests) Unfortunately, at this point, what difference does it make if the treatment does more harm than good?

A G

Posted by: Wayne - Wednesday, January 21, 2009 5:35:58 PM

A.G,

Points well taken. There is a current trial for Ceftriaxone (Rocephin) for ALS. It should be noted that this trial has nothing to do with Lyme but is proposed as a way of enhancing the EAAT2 protein to carry away glutamate. However, Ceftriaxone is a powerful antibiotic. I wonder how many PALS have had bad reactions to it?

Posted by: hennolito - Thursday, January 22, 2009 4:40:30 AM

hello everybody
hello dr.mccarthy

there are doctors following ALSpeople and try to help...
what comes out ( my point of seeing the things ) is that kinesiology is a funny way to test this sick people and to find out what they need in this moment and even what we have to fight first and what later...
we find the intoxications in a short time that this seams "uncredible" , but it works...

"more than everything else i understood in my lifetime is: there are people which are searching for a cure! BUT; WHY ARE THEY NEVER TRYING TO SEARCH TOGETHER OR LISTENING TO THOSE WHO HAD RESULTS" ???????????

it seams that those researchers try to make there own-story and to search for a single pill which helps 10% of the ALS people.
than we search something else to make more m.... out of it.....

i do follow different ways and have seen benifits and will continue with this way.
i do this by my "own"! and do not use the money someone gave me, but it is what i posses.
when it is finished, we see which results came out...

there where differnt sick people with diagnosis of ALS and got treatments as OXIGEN, ABX, essential oils, etc...
a combination of treatments and researchers which work together as the doctors should do would be the best way for the ALS comunity.
for shure it is not the best way for a company or a foundation which searches "one pill".

bye renzo

Posted by: Neph - Thursday, January 22, 2009 5:04:17 PM

I'd suggest a close reading of what he wrote and how he came up with 150, it is explained in detail.
I did never refer to any aggressice antibiotic treatment, but of effective treatment.
My mother has been treated with various antibiotics since December because of infections/ pneumonia. What can I say? Her fasciculations have disappeared completely. My mum can move her left leg again, which was impossible before. Of course, this is sporadic and especially a placebo effect, you will say, though my mum has never even heard about anything that has to do with antibiotics and a possible positive effect in ALS.
From a scientific point of view, tests on and treatments of 150 PALS is of much more value than anything else, especially if research focuses on mice that mimick fALS.
You are talking about unfortunate stories. To me the real unfortunate story is the huge number of PALS that die every year.

Quote:

quote:Originally posted by jmccarty
I presume you are basing your figure on this post:
http://www.als.net/forum/topic.asp?TOPIC_ID=2181

I have never found or seen any significant substantiation or independent validation of such claims. Furthermore, such a claim that 150/150 would strongly suggest a systematic error that is generating false positives. That’s old stuff (1999) and given the lack of follow-up there would seem no reason to assume validity in such. Furthermore, based on such claims at the time – many PALS then and since have been taken for the ride of aggressive antibiotic therapy assuming the theory of a direct bacterial cause of ALS progression. Some of their unfortunate stories can be read on these forum pages.

John McCarty, PhD
Treatment Investigator,
ALS Therapy Development Institute

Posted by: remig - Thursday, January 22, 2009 5:18:01 PM

There is some evidence that cryptic bacteria like the tuberculosis bacillus can be cleared by non-drug treatments like the alternate day calorie restriction diet or by other diets or drugs that induce autophagy. Apparently the pathogen hides out within vacuoles inside the cell and represses the normal fusing of the vacuole with digesting lysosomes. Non-selective macro-autophagy induction overides this repression and the bacteria then gets digested.

Posted by: Questioner - Thursday, February 13, 2014 3:43:02 PM

As this thread shows, consideration of a Lyme-ALS connection has been around many years. As of late, there has been a lot of discussion of this on the Winning The Fight (the one for the Deanna Protocol) site, with some PALS reporting improvement after testing positive and being treated for Lyme and related co-infections from tick bites. Looking back, some PALS apparently have not improved after testing and treatment for Lyme as well, though interesting that the last post in this thread was 5 years ago. So wonder if anyone here has experience with being tested and treated for Lyme, especially if tested through Igenix labs, which seems to find a lot of positive tests where most labs find negative ones.

Posted by: Nemesis - Thursday, February 13, 2014 3:54:07 PM

The two previously published cases, a Swedish marine soldier and an American MD, were recently accompanied by a third:

Int J Neurosci. 2014 Jan 7. [Epub ahead of print]
Lyme Disease -Induced Polyradiculopathy Mimicking Amyotrophic Lateral Sclerosis.
Burakgazi AZ.

Abstract
Abstract Importance: To describe a case of predominantly motor polyradiculopathy secondary to Lyme disease that can mimic motor neuron disease and has been rarely reported. Observations: A 64 year-old man presented with a one-month history of rapidly progressive weakness involving bulbar, upper limb and lower limb muscles. The physical examination showed widespread weakness, atrophy, fasciculation and brisk reflexes. The initial electrodiagnostic test showed widespread active and chronic denervation findings. The initial physical and electrodiagnostic findings were suggestive of Amyotrophic Lateral Sclerosis (ALS). However blood serology indicated possible Lyme disease. Thus, the patient was treated with doxycycline. The clinical and electrodiagnostic findings were resolved with the treatment. Conclusion and Relevance: The diagnosis of Lyme disease can be very challenging and it can mimic other neurological disorders such as ALS or Guillain-Barre syndrome (GBS). Careful and detailed examination and investigation are required to confirm the diagnosis and to prevent misleading inaccurate diagnoses.

PubMed

Posted by: OhGosh - Friday, February 14, 2014 4:44:27 PM

Nem:
In the previous post / the patient, I suppose sensory system is also involved and one the neurologists here (at least the university based) use for differential diagnosis. I know for my daughter, within three months of onset, we looked into AVM (perhaps because of her young age?), Hereditary spastic paraplegia, CD, Lyme etc. and only after eliminating such possibilities, they reluctantly declare probable ALS. I wonder if instead of looking into specific diseases and cases(such as CD or Lyme), you may benefit by looking into digestive systems and GI issues etc. in protein misfolding that perhaps cause havoc in the whole system. In the old Indian Ayurveda, they equate stomach to God or temple and keeping it clean, perhaps with reason. Just a thought from a person not directly involved in this topic.
OG
EDit: Had AVS instead of AVM before and corrected.

Posted by: Nemesis - Saturday, February 15, 2014 5:00:39 AM

I am reasonably sure that there is a link between gastrointestinal disorders and neurological diseases. And I am not alone since research regarding Parkinson's Disease, for example, has established that inclusions of misfolded synuclein can be detected in the gastrointestinal tract many years before onset of neurological symptoms of PD.

However, I believe that my recent exercise in the Metabolic Core thread, aimed to clarify why celiac disease can mimic ALS, has illustrated that the most significant challenge is that Western medicine and science is based on a much to reductionistic approach.

Specialists in internal medicine and neurology seldom meet, they in fact do everything in their power to advocate the special properties and the importance of their field in order to get more resources.

This means that only a very few of each kind will ever bother to consider the impact of a smoldering infection in the intesines on the CNS, and the trail in the scientfic literature will thus be very hard to follow, since there are so many gaps.

Scientists involved in neurology research actively shy away from using or considering impacte to and from periferal cells since they are "different and less relevant" than neurons.

Needless to say they are completely wrong, essentially illiterate and bordeline idiots.

But I would like to contest that sensory involvement is not a part of ALS. The Sod1 D90A mutation is, in fact, one of the most prevalent inheritable forms of ALS in northern part of Europe. This form is slow and has sensory involvment. This means that patients with D90A is the most under-utilized and the potentially most valuable asset to ALS-research at the same time. D90A patients can namely sense the progress of ALS e.g. through parethesia. This means that D90A-patients could be regarded to be extremely sensitive and direclty communicating biosensors that can determine the efficacy of different interventons.