Tuesday, October 21, 2008

ILADS Meeting

I am sorry. I don't have time to review all the responses on my blog. I am glad it has been so active. I wanted to give my impressions from the 9th annual ILADS meeting. I am going to go out on a limb and open myself to storm of criticism. But as a med school professor once told me: "You got to call 'em like you see 'em."
In fairness, I have not yet given my feedback to ILADS. It took me a while to "digest" the meeting. I was disappointed. This was my second ILADS annual meeting. I go to many CME activities. This conference was not up to the standard that I would expect.
None of the lecturing physician faculty hold academic appointments at Medical Schools. This was not true last year when Sam Donta and Dr. Fallon presented lectures. There may be very few medical school faculty/ practitioners who would or could present at the meeting; but there are many faculty members who could present basic science data. There is much work in this arena. Much of it is done in other countries. These sorts of presentations would have increased ILADS' credibility as an "international" organization. Perhaps these lectures would be boring to the average attendee; nevertheless these are an essential ingredient of high caliber CME activities.
Dr. Phillip's review of Chronic Lyme-An Evidence-Based Review, was the highlight of the meeting. This was a detailed presentation replete with scientific data and a thorough review of the literature. Other lectures were interesting, but lacked an evidenced based edge.
The latest break through for chronic Lyme, the Fallon study was not discussed or critiqued at the meeting. What I heard from faculty was: "You know, the Fallon study was limited; they had to work within narrow parameters."
Most of the lectures were not science based. There were based on theory, suppositions, anecdotal information and stuff that "everyone knows."
There was a lot of information related to alternative medicines and herbal therapies.
My opinion: ILADS needs to stay focused on the science of Lyme medicine. The Fallon study is important. Dr. Cameron, the president of ILADS published a study on the effectiveness of amoxicillin for chronic Lyme syptoms. This work was not presented. In fact, I asked one of the countries best know Lyme docs about amoxicillin. He told me that it doesn't work. He uses Omnicef. Based on what data?
There is a paucity of hard scientific data regarding the management of chronic Lyme disease. This is a problem. Meetings such as these need to focus on that data.
The meeting should at least be divided in some way. 1) Evidenced based science 2) Alternative and complementary medicine 3) Theortical issues, food for thought. The emphasis should have been on category 1.
The heavy hitters in the Lyme field all disagree with one another. Should Rocephin be used as a pulse therapy based on "kill kinetics." Where are the studies. Is Amoxil bad? Why don't you need to use Plaquenil any more with Biaxin? Oh, I am sorry, it depends on which luminary you pose the question to. Where is the evidence that chelation therapy or any of the herbal concoctions works? This list could go on ad nauseum. You get the idea.
Lyme docs are subject to an incredible witch hunt. We need to have the highest caliber national meetings.
Let's present the evidence-the data. There is more than readily meets the eye.
There is data regarding the use of Amoxil. There is data regarding the use of Rocephin. There is data regarding the use of Biaxin with Plaquenil. There is limited data regarding the use of Flagyl.
If there is no data regarding the use of combination therapy then carefully explain the rationale for this approach. You can't afford to make this stuff up when so much is at stake.
For one presenter every patient recieves thousands of dollars of lab work at the get-go. For another it is assumed that everyone has Babesia and Bartonella so no testing is needed. A highly regarded LLMD shoots off that Lyme is sexually transmitted: based on what evidence?
There should have been a critical appraisal of laboratory testing. What is the value of PCR testing? etc.
It was clear that the best Lyme experts in the land agree on very little.
I regularly attend meetings at places like Harvard. These guys are over the top evidence based.
Still, it is not unheard of for "experts" to vehemently disagree with each other. These folks can get away with it. They are not dealing with highly charged and divisive diseases and they have the curriculum vitae to back them up.

Put that all aside. The ILADS physicians are a wonderful group of dedicated caring physicians. They are on the cutting edge of changing everything that doctors thought they knew about medicine. There were many thought provoking lectures. ILADS doctors are the future of medicine!

I would have preferred for Dr. Steven Phillip's lecture to have set the tone of the meeting.
It is good to be open to many points of view. But perhaps it is better to entertain such things after the IDSA creates new Lyme guidelines which are reasonable. Or (I am being selfish) until such a time that Lyme docs come out of shadows and feel free to treat this epidemic without fearing the wrath of state medical boards who seem anxious to take them down.

I Love Lyme docs!

18 comments:

anon said...

"ILADS doctors are the future of medicine!"

Like Joseph Jemsek who had a patient die from his treatments, or Raphael Stricker (president of ILADS) who previously worked in a penis enlargement clinic? That's some future.

lymie said...

You have been discovered by the IDSA crowd and/or trolls that inhabit unmoderated forums, per anon's comment.

I think that asking doctors in clinical practice to produce studies to back up their treatments is a bit unfair because they are not the ones who do studies. The lack of studies is entirely due to the gov't which funds and decides on the direction of studies to be funded. This is why there is an effort to get legislation passed that will fund and direct such research. And this is why the IDSA opposes it.... they want the money but not the direction.

If you go to Harvard for medical conferences, do you get accurate information on lyme? I doubt it, since that is where Steere is now. Recruited, no doubt, because he has been on the NIH grant payroll for decades. Evidently our big name institutions go for the cash, and don't much care what the results are.

Lyme report: Montgomery County, MD said...

Anon be nice. Prove that what you are saying about Sticker is true or stop slandering people. Even if is true it has no relevance. Sticker is an accomplished physician. Period. Patients die every day. People die from a single aspirin or a dose of penicillin. Jemsek may be a bit arrogant but he is a good doctor. Patients die of MS, ALS, Dementia and a host of crippling multisystem disorders every day because mainstream medicine refuses to consider that Lyme might be the cause. Dr. Martz who was at the ILADS meeting is a case in point. He was saved from a death sentence pronounced by mainstream medicine because of the work of ILADS and similar groups.
I don't know the story of the Jemsek patient who died. There are risks inherent to the practice of medicine and surgery. Iatrogenic (physican caused) deaths occur daily. There was a time when physicians went on strike in Israel. During that period the death rate went down because elective surgery was not being performed. Patients die every day from cosmetic surgery! Give me a break.
Are you the IDSA mole?

Lyme report: Montgomery County, MD said...

Lymie: There is good science to support ILADS guidelines. There are qualified academicians who can speak to the subject. Fallon at Columbia has opened a Lyme research center. Practicing physicians can have a role at educational meetings but they need to stick to well documented facts. If they mention their personal experience and thoughts;such discussions should come with a disclaimer.

The Harvard conferences I attend avoid the whole topic of Lyme disease. Thank goodness.

They are strict adherents to evidence based medicine. Recommendations from EBM have included: PSA testing for prostate cancer may have no value,(if you do it, spend 45 minutes with each patient explaining the nuanced arguments and have them sign a waiver), mammograms for women under 50 have no value, the best meds for hypertension are beta blockers and diuretics: never mind-avoid beta blockers at all costs, all post menopausal women should be given hormone replacement therapy- never mind- never use it!, don't treat otitis media in children with antibiotics-tubes- not tubes?. This list could go on forever. The speakers at these high brow conferences show you reams of statistics: they combine data from various studies using "meta-analysis" to prove that a therapy has a benefits which meets the criteria of statistical significance.
Where something cannot be studied panels of experts are assembled and they create recommendations. Since there is no evidence these recommendations are considered a substitute for EBM. Somehow opinions become a substitute for science and evidence. We call this "Eminence" based medicine.

There is a shortage of scientific data for a lot of diseases. Despite this, doctors use the best evidence and their tclinical judgment,to do their best for their patients.This is why medicine is more an art than a science. Such is the case with Lyme.

The "war" between between ILADS and the IDSA has to end. There are an increasing number of ID specialists who are open to the concepts of chronic Lyme disease.
This too will pass.

A blog is a place where opinions and anecdotes are posted in cyberspace. I do not produce guidelines. I simply talk about the process which is part and parcel of a huge evolving paradigm shift in medicine. Of course there are nay sayers. All I can do is the best that I can do. I believe that time will prove that I am on the right side of history. I refuse to lurk in the shadows and exist in a secretive underground world. If the IDSA is right they have nothing to fear from me. After all: I am just a simple country doctor.

anon said...

http://www.aldf.com/pdf/LymeInc.pdf

And I found this nice little tidbit:

http://query.nytimes.com/gst/fullpage.html?res=9D0CE5D71F31F932A15752C1A967958260

You guys are right; it's all a big conspiracy. But saying "Patients die of MS, ALS, Dementia very day because mainstream medicine refuses to consider that Lyme might be the cause" is incredibly irresponsible, especially for a doctor. Plenty of ALS patients have been scammed into this lyme disease testing and treatment; none of them had lyme disease. It is sad doctors would prey on people like this. The only one who was "cured" is this mysterious Dr. Martz, who could be an internet legend for all anyone knows.

consilience said...

Anon, are you an ID doc in Maryland, by chance?

dogdoc said...

Not even sure I want to touch this one- rare for me I know.

Doc- did Dr Phillips have new info beyond his ILADS posted 2007 powerpoint?

Others- Stuff anon is spouting is all over pop lit on the net. Even ID docs think a little deeper than that! All in all, my guess is anon would be more likely to have or be a caregiver of someone with ALS. They have some pretty intense opinions on Dr Bach and LD. The things being referred to are within that group in one place. I don't know enough about that issue to comment- lots of he said, she said in LD. However, if LD caused a considerably damaging neurologic endpoint such as ALS, by the time you had a definitive diagnosis many patients would likely carry a poor prognosis even with treatment of LD. Thats a lot of damage already done. And treatment could make it worse (think even recent examples of antibiotic studies in ALS- like the minocycline one). Anyone being treated for LD with ALS should be given a full understanding of risk vs benefit. However, honestly, having been in the spot where I might have had to make that exact decision, I think I would have tried to treat cautiously. Its a grave prognosis.

anon- people do die and/or be dehabilitated from Lyme disease and related conditons because mainstream medicine refuses to believe it exists. However, that doesn't mean everything that is triggered by a chronic infection (Lyme or otherwise) can be treated at the stage when the damage is done. Nor should it be represented that way. Or that if you have exposure to Lyme, that its the only factor in setting things off- lots of things we don't test for in every patient. We really don't know for sure the beginning of many neurodegenerative diseases like ALS, MS, PD, ect. We know what happens in the end but not how they start. There is some decent evidence for chronic disease triggers (not just LD). In the end, thats not much help to most with ALS.

Lyme report: Montgomery County, MD said...

Anon: If you are so sure of yourself come out of the shadows. Your satirical comments about electromedicine were actually funny. Your gratuitous comments about individual physicians are not. Your approach: Kill the messenger- if you don't like the message is infantile. ILADS has members like Sam Donta and Brian Fallon, tenured faculty at prestigious medical schools who are highly published and highly respected by their colleagues. The recent ILADS meeting honored a well known microbiologist/scientist who is quite well known. This individual is an ILADS supporter. Perhaps you have heard of him: Willie Burdorfer. You know, the scientist who discovered Borrelia burdoferi, the spirochete that causes Lyme disease.

Dr. Martz is no phantom. I recently shook his hand. It is well documented that Lyme is a cause of motor neuron disease (aka ALS). This is reported in both ID and neurology literature. Call Dr. Martz if you like. He is a genuinely lovely man. He studied a group of patients who had ALS confirmed by University trained neurologists. He treated these patients with aggressive antibiotic regimens. About 1/3 of the patients progressed, 1/3 stabilized and 1/3 improved. He has the data to prove it. So far his work goes unpublished.

Conventional medicine says ALS is a death sentence. Explain how searching for treatable causes like Lyme disease is a scam? It is your closed mind that is incredibly irresponsible.

I will be posting a case study which you may find interesting. I have no academic background but I believe I will try to get this published in a peer reviewed journal.

OK so you are an ID doc, or not. Hey your anon. Nobody believed that H. pylori could cause peptic ulcers. Two doctors were ridiculed for years. Recently, as you know, the two individuals recieved a Nobel prize in medicine.

All doctors are arrogant. It comes with the territory. Skepticism is healthy and necessary.
Virtually everything that we do now as doctors will seem ridiculous to those that succeed us in the comming decades. Medicine changes. Science evolves and paradigms shift.

It is easy to dismiss those with whom we disagree as fringe lunatics and conspiracy nuts.
That's what they said about: Copernicus and Gallileo with their crazy theory that the sun was the center of our "Universe", Pasteur with his crazy germ theory, Newton and Einstein with their crazy theories about physics and so on. The list could go on. The point is that every revolutionary discovery and new idea in the history of medicine and science was considered complete lunacy and hogwash- until the last possible moment, when it was suddenly embrassed as brilliant.

You know very little about the subject but your mind is already made up.

Look at the studies. Read the literature. Don't quote articles from newpapers.

You friends Gary Wormser and his buddies who wrote the 2006 Lyme guidelines seemed to have gotten themselves into a tight place. They were found to have multiple violations in the ethics department and to have inappropriate financial conflicts of interest. Gary forgot to mention his ties to Immunetics-oops. Donta's opinions were excluded. Nice.

Conspiracy theory?

No.

Just a bunch of over-bloated egos with tunnel vision.

Doctors are dedicated individuals who pulled 72 hour shifts on call as residents. Doctors have seen their incomes plummet due to the corporate take over of medicine. We keeping doing what we love, not for the money, but because we are sincerely passionate about what we do. We are motivated by a sincere desire to help our patients and alleviate suffering.

What motivates you?

anon said...

This will be my last comment, since I don't want to upset the cabal further.

First, about posting anonymously. I don't see your real name or anyone else's real name in this blog.

Second, I've read about about Dr. Bach, also. And those aren't opinions people post about him; they are real experiences. He is an opportunist trying to take advantage of people. You keep equating ALS with Lyme disease, but I have not seen one article supporting this. I have read several poignant stories of people who had ALS, were convinced by a Lyme literate doctor that they were positive for Lyme disease, went through antibiotic treatment and did not get better. Personally, I went to an "LLMD" who told me you don't have the clinical picture for Lyme disease, but the Igenex report says you are positive, so you must be positive. When I started having serious side effects from the potent cocktail he preecribed, I couldn't get that doctor on the phone.
And this why I use the word scam. One of the founding members of ILADS is Nick Harris, owner of Igenex. If you call ILADS, they will give you the name of a good lyme-literate doctor, who will almost certainly have you send blood to Igenex, at a cost of between $300 & $1000. If you happen to call Igenex first, they will happily send you to an ILADS doctor, who, again, will use Igenex. No conflict of interest there?

And, yes you can keep trotting out the H. Pylori example, or using Einstein as an example. We've all heard these ad nauseum. But please don't tell me I don't know the subject; I know a lot more than I care to.

consilience said...

Sorry to veer off topic, but I wondered if you or anyone (Dogdoc?) could weigh in on treating dogs and cats with long-term antibiotic therapy for chronic Lyme.

Is there a vet's version of ILADS anywhere? I'm sensing parallels with Algernon the mouse (from Flowers for Algernon) in my pets who've been exposed to Lyme for as long as I have, and probably with greater frequency. Vets have told me dogs and cats don't get sick with it long-term in the same way that humans do, so I shouldn't worry about long-term antibiotics for them. I'd sure hate to take bad advice and neglect them if their silent suffering is anything like mine.

Thanks for any thoughts.

dogdoc said...

No LLVD that I know of but we aren't fighting about it anyway. No controversy or factions. LD was always written about as a disease with brief treatment with no discussion of carrier or chronic state. However, many vets did not find this to be so- it was considered uncurable by some. I had some luck with treating it over and over until it finally stopped coming back. However, these were symptomatic patients with obvious shifting leg lameness, swollen joints, lethergy, poor appetites, ect where the symptoms would go away and come back obviously. In other words, I knew what they had and could see if what I was doing was working. I don't think we would be able to tell in we had a low grade chronic state where they were not too sick. We have good animal studies that show persistance of the Borrelia after treatment. However we also have a large population with positive tests to exposure when we routinely screen that have no clinical signs. They don't have IgM antibodies and don't respond to antibiotics (some treat, some don't). Before I got tossed into LD in humans, I wouldn't have given it a thought. Now I wonder how much we are missing. Its not an easy call. I haven't seen the chronic patient that takes forever to respond on antibiotics- mine respond quickly in comparison to humans it seems. It comes back and you have to keep retreating it when it does. We were never trained to look for it as a disease with nonspecific signs but these days a lot of us screen for it with routine exams. I know I look for it more now although I'm really not finding it in chronic nonspecifically doing well patients. I'm sorry that wasn't more helpful. Are your pets sick?

consilience said...

Thanks, Dogdoc. I appreciate your feedback. Glad to know some are thinking about this.

My dogs are the most hyperalert on the block. They go nuts over every leaf rustle outside. They seem always on edge. I wonder could that all come from living with a neurolyme master? Or are they having hyperacusis and anxiety from their own infections as well?

One of them turned extremely dog aggressive all of a sudden (Lyme rage?). She seemed better after 3 mos. of doxy plus zithro, but we weren't sure it was over. We were afraid to let her free with other dogs to see how she did. The vet who was kind enough to prescribe the longish course of atbx (who's wife has neurolyme) didn't wish to treat further. My other dog's intermittent arthritis improved.

The dog aggression is back now worse than ever two years later and getting out of control. It seems contagious. I'm considering trying the Buhner herbal protocol for them as well as adding that to my own atbx regimen, though I'm not sure if Cat's Claw or Andrographis are safe for canines (or felines - I have one that was surely exposed to Lyme).

It's tough to make decisions for these guys when they can't express how they feel. Not sure how to weigh the risks of treating vs. the risks of letting possible continuing infection go. I sure appreciate your input.

Thanks also LymeMD for making this discussion possible. It seems that if Lyme can do what it does psychologically to humans, surely we can learn from our critters if we can figure out what to look for.

dogdoc said...

We need the opinion of an alternative vet who does herbal work for that opinion- I'm still at the milk thistle for liver support level of knowledge. There used to be one in Bethesda. I'll see anyone knows anyone up in NOVA. By the way, what ages and breeds are your dogs?

Doug said...

anon....why don't you move your energy to becoming a part of the solution and not part of the problem. Also, a little anger management might help!

dogdoc said...

Remember, there was probably a time when all of us needed a little anger management and perspective. Depends on where you are in the process and whether you could find an outlet for the need to do something. Here we are all but a few sentances. There is a life and a story behind each of our sentences that everyone does not know. I am learning by the school of mistakes to try to understand that. Our opinions are shaped by what we have been thru and what we know- I think of all the stages that mine have been thru in just months. Perhaps we are all here because we are looking for answers- reguardless of how long it has been since we were angry about it all. Just a thought.

Joanne said...

Hi Thanks for reporting back on ILADS conference even though a little disappointing. I suppose as many Lyme sufferers, we want instant answers.
I do hope not too much notice is taken of remarks about Amoxycilin. Amoxycillin was significant in leading to my GP diagnosing Lyme Disease after she had been treating me for some years for Poly myalgia rheumatica and a course of Amoxycillin for chest/throat/sinus infection improved my arthritis/muscle weakness. My severe and debilitating arthritis and muscle weakness has improved significantly on amoxycilin. Sadly when I went onto Doxycyclin the arthritis and muscle weakness progressed to affect vertually every joint in my body and many muscles but once again back on Amoxycillin I can now after 3 1/2 years walk upstairs again. Unfortunately many other symptoms that disappeared on Doxy have returned but since GP put me onto Clarithromycin they are also resolving. I look forward to hearing my LLMD's opinion shortly. You don't have to be a medic to realise that some antibiotics work better on different symptoms.
Joanne Guildford Surrey UK

consilience said...

Thanks very much, Dogdoc, I'd be curious to hear what any vets might be doing for chronic Lyme in pets. By the way, Northern VA is where we were all exposed to Lyme (Loudoun/Clark counties) before we moved to the Pacific NW where we discovered what was plaguing us. One is an 8 yr old black lab mix and one is a 6 yr old beagle/terrier mix.

Interestingly, they both went grey in the muzzle by the age of 4 and look much older than they are. Wonder if there's any connection with having Lyme since puppyhood. We don't meet too many dogs out here with known Lyme to compare. Some people are starting to catch on for themselves, though!

Thanks again LymeMD. I'm sorry to hijack your thread on ILADS, it just got me thinking about how little consensus on Lyme we have for humans, and how we seem to have even less for critters.

Kris said...

Well, Anon, you are incorrect. I was given the name of an LLMD through ILADS. This particular LLMD told me since I was positive through LabCorp I did not need to go through Igenex unless I chose to do so. I chose to do so on my own dime & it backed up LabCorp's results except that Igenex included bands 31 & 34, the bands used in the making of the LymeRix vaccine. These bands have been removed from our "mill laboratories" that your general physician is likely to use. They also include the other Borrelia specific bands removed from current lab tests.

To the blogger: there is a substantial body of evidence to support ILADS "opinions." Those opinions are even backed up by members of the IDSA who have now contradicted their own previous case studies & reports, the ones you say are "hard evidence."

Yes, I have yet to find one credible case study about the sexual transmission of Lyme, but anyone familiar with medicine knows that if we have evidence regarding fetal transmission then it's reasonable for one to assume it can be sexually transmitted.

Syphilis is transmittable to fetus and sexually for the same reason.

We DO have case reports of fetal transmission of Lyme disease. The cases are available at sites such as the National Institutes of Health, et al.

"Stillbirth Following Maternal Lyme Disease" New York State Journal of Medicine, 1987; authors Alan MacDonald, MD, Jorge L. Benach, PhD, & Willy Burgdorfer, PhD. This case study cites another case study in Wisconsin of fetal transmission & includes references from an IDSA doctor now pretending it never happened. There have been many other case studies since this time showing fetal transmission of the spirochete from mice to their fetuses. Janis Weis, University of Utah, was involved in one of these studies funded by the NIH.

If your point was that the evidence may not have been readily available at the meeting, that I may agree with, but the "hard evidence" has been out there for years.

There is a great deal of evidence to support ILADS positions.

Anon: A simple search of the National Institutes of Health & "ALS + Lyme" would have brought up information on ALS & Lyme. Lyme is a differential diagnosis for ALS. Perhaps you just aren't familiar with the best searching techniques.

http://www.ninds.nih.gov/disorders/amyotrophiclateralsclerosis/detail_amyotrophiclateralsclerosis.htm

In the NIH ALS clinical trials INCLUSION criteria for participating in an ALS trial is a NEGATIVE Lyme serology. The NIH requires you must first test negative for Lyme to participate in the ALS trial.

http://clinicalstudies.info.nih.gov/detail/A_2006-N-0224.html

Anon, please stop misleading people. ALS can actually be Lyme disease & you are doing a serious disservice to those who have a chance at a cure.

I just pray you aren't the guy from Colorado Springs whose wife was diagnosed with ALS & chose to be treated for Lyme. While she was so ill, he was having an affair which resulted in a pregnancy. One definitely has to question the husband's opinion regarding her stopping the Lyme treatment when his affections for his wife had gone elsewhere. How does one know for sure that he didn't mind if his wife was out of the picture? He even mentions she was severely depressed. She's ill, her husband is secretly cheating & she's depressed. Of course we women can't tell when our husband's affections are distant(sarcasm intended). After her death he went on to marry the mistress & she is now the stepmother of this poor woman's three daughters.

So Anon, if that is you, then certainly your opinion is biased & cannot be considered as credible. Your statements seem to eerily coincide with his blog.