Gregory Bach is offering false hope to ALS patients

"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."
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Misdiagnosis of ALS as lyme disease

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Topic URL: http://www.als.net/forum/topic.asp?TOPIC_ID=523
Printed on: 01/23/2007

Topic:

Topic author: Mike West Monroe
Subject: Misdiagnosis of ALS as lyme disease
Posted on: 03/13/2006 18:48:05
Message:

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@xxxxxxxxx

Thanks,


Mike West Monroe

Replies:

Reply author: Malipu
Replied on: 03/13/2006 22:54:09
Message:

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

Reply author: ladave
Replied on: 03/14/2006 03:41:58
Message:

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

Reply author: jmccarty
Replied on: 03/14/2006 09:44:45
Message:

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

Reply author: ladave
Replied on: 03/14/2006 13:46:41
Message:

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.

Reply author: nhhawkeye
Replied on: 03/14/2006 18:54:27
Message:

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

Reply author: Mike West Monroe
Replied on: 03/16/2006 19:28:22
Message:

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

Reply author: Mike West Monroe
Replied on: 03/20/2006 14:18:28
Message:

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@xxxxxxxxx



Mike West Monroe

Reply author: Paul
Replied on: 03/21/2006 14:08:10
Message:

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.

Reply author: mizzlizz
Replied on: 03/21/2006 16:52:22
Message:

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

Reply author: Meg1
Replied on: 03/21/2006 17:32:32
Message:

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.

Reply author: ladave
Replied on: 03/21/2006 17:44:45
Message:

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?

Reply author: Mike West Monroe
Replied on: 06/21/2006 17:21:47
Message:

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@xxxxxxxxx

Mike


Mike West Monroe

Reply author: Questioner
Replied on: 06/21/2006 19:27:35
Message:

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.

Reply author: mizzlizz
Replied on: 06/22/2006 08:53:07
Message:

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

Reply author: Questioner
Replied on: 06/22/2006 13:36:33
Message:

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

Reply author: Mike West Monroe
Replied on: 07/20/2006 18:40:40
Message:

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

Reply author: mikafilly
Replied on: 07/24/2006 01:00:55
Message:

Mike,

My name is Susan Evans and I am presently living in Colorado Springs, CO. Please forgive me, but your letter is what is "bogus", not Dr. Bach, Dr. Martz and many others who treat lyme. I have had lyme for 11 years, and personally know Greg Bach and his wife Deb, who by the way both have lyme themselves. Deb went blind when she contracted lyme and her family doctor said it was hereditary and nothing could be done. Dr. Bach could not accept that and started researching lyme and trying every kind of treatment protocal suggested and remarkably her sight came back. When she stopped treatment, her sight left again. I cannot tell you if she is still on treatment because I have not been in much contact since moving to Colorado, but I can tell you that his practice IS NOT BOGUS. I was treated by Dr. Bach along with 4 other lyme literate doctors over the course of 4 years. I stopped treatment when I moved to Colorado because at the time, there were no lyme literate doctors here. Unless you have this disease you have no idea what we go through on a daily basis. Dr. Bach is very sincere in what he is doing. My brother suffered for 4 years and not one doctor in Ohio had any clue what was wrong with him (so they prescribed anti-anxiety medicine and pain medicine when they didn't even know what he had), so he finally agreed to see Dr. Bach. That is what the medical society does as a rule, they treat symptoms, but never even knew what they were treating. He has not been in treatment long enough to see much improvement yet, but if it wasn't for Dr Bach and the few other truly dedicated lyme doctors, I would not be here today. And is response to your comment about getting sicker when on treatment, that is exactly what happens. As it kills the bacteria, toxins build up in the body quicker that they can be expelled and the patient gets extremely sick (called a Jarish Herzheimer or flare) about every 30 days, but after being in treatment for awhile, those symptoms lessen until finally the patient starts feeling better for longer periods of time. There is no quick fix for this illness. It can take several months to 2 years or more of treatment to finally be in remission. I was treated for 4 years and was very very ill. My doctor tried several times to stop treatment and I would always relapse, so then I was put on IV therapy and I finally started turning the corner.

As for Dr. David Martz, he is alive and well (with lyme disease the word well is relative), and I personally know him. He lives right here in Colorado Springs, CO. If you would like a phone # to verify, I can provide it. He was diagnosed with ALS disease, was in a wheel chair and had given up his medical practice. I have spoken to his wife also who verified this. After finally being diagnosed with Lyme, he started receiving treatment. He is now out of the wheel chair and has reopened his practice to treating only lyme patients. How do you explain that change in his health? He is also being scrutinized by the medical board in Denver. Ask anyone of those people what they know about lyme disease and they will tell you - "not much". How dare you condemn what Dr. Bach and others are doing for those of us who have the disease, when you don't even have the facts. You can never know how devastating it is unless you have had it. I was on IV therapy for 9 months (twice a day), and several oral antibiotics over the course of 4 years. I still have the symptoms, but I am now dealing with it holistically because the drugs are very toxic and I don't want to take them anymore. They saved my life, and now I am maintaining with exercise, diet, a positive attitude and faith. I live with pain daily and short term memory loss along with several other symptoms, but I am very thankful for the doctors who cared enough to fight the medical board, insurance companies, our government and people like you, to help us when no one else would. I also have faith in, and support those doctors who have the courage to diagnose and treat lyme, while being ridiculed and threatened by people like you. They are risking losing their license and practices by upholding the oath that they took as doctors. They are passionate about what they are doing, and compassionate of their patients. Lyme is a very political disease, which I feel was manufactured in a laboratory on an island off New York City. There is evidence to back that statement and I will supply at your request.

Mr. Monroe, I suggest that you research this disease and talk to people who have it before you publish negative, damaging, false information on the internet, because you are hurting us more than helping us. Susan Evans PS - I am enclosing a picture so that you know I am not Bogus. I pray that you never get this horrific disease because it will change you forever. Sincerely Susan Evans THIS IS TO MY BROTHER WHO IS ALSO RECEIVING THIS, IF YOU HAVE DR. BACH'S EMAIL ADDRESS, PLEASE FORWARD THIS EMAIL. THANKS

Reply author: Jeff Schaffer
Replied on: 07/24/2006 13:46:57
Message:

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

Reply author: tse
Replied on: 07/24/2006 14:32:12
Message:

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

Reply author: Jeff Schaffer
Replied on: 07/24/2006 15:17:23
Message:

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

Reply author: Meg1
Replied on: 07/24/2006 18:58:14
Message:

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

Reply author: skode
Replied on: 07/27/2006 14:44:40
Message:

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

Reply author: Questioner
Replied on: 07/27/2006 19:53:48
Message:

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.

Reply author: Questioner
Replied on: 07/27/2006 20:14:01
Message:

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.

Reply author: Questioner
Replied on: 07/27/2006 20:21:41
Message:

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...."

Reply author: GLS
Replied on: 08/28/2006 15:07:12
Message:

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

Reply author: jmccarty
Replied on: 08/29/2006 11:09:14
Message:

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

Reply author: GLS
Replied on: 08/29/2006 14:08:18
Message:

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

Reply author: jmccarty
Replied on: 08/29/2006 15:23:51
Message:

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

Reply author: SevierWeather
Replied on: 08/29/2006 15:54:53
Message:

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.

Reply author: GLS
Replied on: 08/29/2006 16:03:07
Message:

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.

Reply author: mizzlizz
Replied on: 08/29/2006 21:25:49
Message:

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

Reply author: Michele
Replied on: 08/29/2006 23:43:14
Message:

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...



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

Reply author: Meg1
Replied on: 08/30/2006 00:00:44
Message:

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

Reply author: GLS
Replied on: 08/30/2006 10:42:53
Message:

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.

Reply author: GLS
Replied on: 09/01/2006 13:41:54
Message:

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.

Reply author: nhhawkeye
Replied on: 09/01/2006 19:31:35
Message:

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

Reply author: emilesland
Replied on: 09/16/2006 20:28:04
Message:

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

Reply author: Questioner
Replied on: 09/19/2006 01:30:11
Message:

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.

Reply author: vahab
Replied on: 09/19/2006 09:21:53
Message:

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?

Reply author: Taylor
Replied on: 09/19/2006 09:51:30
Message:

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

Reply author: GLS
Replied on: 09/19/2006 14:29:36
Message:

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

Reply author: Questioner
Replied on: 09/19/2006 14:39:54
Message:

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.

Reply author: Nye
Replied on: 09/21/2006 16:50:53
Message:

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.


Reply author: lou
Replied on: 10/06/2006 11:13:31
Message:

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.

Reply author: Malipu
Replied on: 10/06/2006 12:43:29
Message:

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!

Reply author: lou
Replied on: 10/06/2006 14:51:16
Message:

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?

Reply author: Malipu
Replied on: 10/06/2006 16:15:57
Message:

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.

Reply author: jmccarty
Replied on: 10/06/2006 16:37:13
Message:

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


John McCarty, PhD
Treatment Investigator,
ALS Therapy Development Foundation

Reply author: Michele
Replied on: 10/19/2006 18:54:18
Message:

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

Reply author: linda5
Replied on: 10/19/2006 20:17:34
Message:

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

Reply author: stschubert
Replied on: 10/29/2006 00:07:09
Message:

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.

Reply author: linda5
Replied on: 10/29/2006 09:22:06
Message:

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

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