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» LymeNet Flash » Questions and Discussion » Activism » Why is ilads not consistent?

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Author Topic: Why is ilads not consistent?
momofthree
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The other day I read the Chicago Tribune article. The scariest thing about this article is that it contains some truths along with a lot of BS.

I know that ILADS is getting their protocol republished on the National Guidelines Clearinghouse very soon. I couldn't be happier. But there is a confusion that exists.

I am just asking and not trying to condemn anyone or their ways, but how many llmds are actually following this protocol? If supplements were strongly suggested and not required, a llmd would be in line with ilads protocol.

Read the old protocols. We are only hurting ourselves as a whole group by constantly having a lack of consistency among our llmds.

Why doesn't ilads address this issue?

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Robin123
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Just curious - when you say it contains some truths, what are you referring to?

All LLMDs treat differently. There is no consensus, I don't think. We are all different. This is a multi-faceted illness and so are we.

The only thing they do all agree on, I think, is that longterm antibiotics are needed, as this is a challenging organism to combat.

Also, ILADS doctors pretty much agree it's important to treat for an indicative history and symptoms, even if tests don't show positive, because not everyone who has the illness tests positive.

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Amanda
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1. before insurance companies ruled, MDs in many professions treated different bodies differently, because although diseases have many commonalities, people's bodies are different. Hence, the need for more individual approaches for people who fall outside the norm.

It is only less common now, because "guidelines" are used more like "rules". Of course it is good to know what is effective, but what about people who aren't the average patient?

2. Add to that that Lyme and tick disease can widely varying in disease presentation. Some of us are arthitic with hearing loss, some of us have MS like symptoms, some of us go blind...so it makes a "one size fits all" appraoch impossible. Some drugs penetrate into joints better than the nervous system and vice versa...

3. There is still so much we don't understand about lyme. This puts the LLMDS in a position of either a) following protocols that fail half the time or b) throwing the kitchen sink at some of us in an attempt to find something that works.

4. There are around 100 strains of lyme ( I think it was last count), so there is just no way 2 or 3 abx could be effective agaisnt all those. I don't think they even know how many of those strains infect humans.

5. Lyme is one of the most genetically complex bactera known. This might expalin some of the variability in disease presentation.

I think many of the LLMDs would prefer to have more answers. We just don't have them yet. This is what makes all the guidelines such crap. How can you be so certain about treatments, when different researchers (sometimes the same reseacher!) have such different findings in studies?

I read about some poor guy who had one of the nasty new strains of tuberculosis. They kept him in a quarintined facility for almost 2 years and gave him all kinds of different abx.

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Tincup
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Mom of 3 said... "We are only hurting ourselves as a whole group by constantly having a lack of consistency among our llmds."

First of all, the science is evolving by the day and we are discovering new things that can help as we go along. Guidelines are only written every 5 years or so and can't keep up.

IDSA Guidelines- They have one restrictive way to define the disease and treat it. No allowance for differences in patients, coinfections, history, length of time having it, presentation, etc.

ILADS Guidelines- Open to what the patient needs are at any given time with Lyme and coinfections- no set protocol because there can't be one size fits all, as Amanda so nicely pointed out.

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lou
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Having every doctor follow one treatment plan is called cookbook medicine. But the recipe does not work because every patient may be different. Different in the germs they acquired, their background health situation before they got sick, their finances, their insurance status, their responses to drugs, etc. etc. Plus, as someone else already pointed out, this is a disease that still doesn't have enough research done on it and is lacking information in a number of areas. An emerging infectious disease is still a mystery.

Look at the cookbook for cancer. Radiation, surgery, chemotherapy. And people still die because those treatments are just the only choices now, lacking a complete understanding of the disease. You could say this about a lot of medicine. Which is why guidelines set in stone are never really the ultimate solution for many diseases. These are hard and fast rules for a fluid situation.

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Camp Other
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I would still like to see some sort of guidelines behind the methodology of how to treat patients individually, if that makes sense?

Of course every person is individual. That's why my family doctor will give me a second course of antibiotics or try an entirely different course of antibiotics if the first course fails to get rid of a sinus infection. We can apply this approach to anyone and more everyday infections and not just Lyme Disease and coinfections.

But I'd like to see a comprehensive book or publication written by ILADs doctors explaining their consensus about the science behind the choices they make for individuals. Include chapters on risk reduction and supportive treatment, and not just antibiotics. Not just a list of citations with some background paragraphs such as the rebuttal ILADS gave to the IDSA for their 2006 guidelines - but an entire book.

I'd also like to see some citations for their treatment decisions such as the ones Burrascano put out - why did he choose this treatment for this long using this versus that? One of the criticisms that's been leveled at the Chronic Lyme Disease community lately (and ongoing) has been to ask where the scientific evidence is - this is one place it should be cited, and not just in comments to the Tribune and random blogs.

What can be done to legitimize more of what is done and gain professional support from a wider range of medical professionals and science media? It seems the first step to me would be to present the evidence in a way that it is hard to argue against it. Do it one step better than the IDSA members who, when asked, just say their opinion is that Lyme cannot be chronic without demonstrating how they arrived at that opinion outside of four small, limited trials and without looking at the research done by Dr. Stephen Barthold and others.

And if they have looked at other research and rejected that, too, why don't they explain the grounds for that rejection?

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Amanda
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Hi Camp,

I'm not sure if you know, but Dr. B's guidelines are not the core ILADs protocol, though it does cover a lot. There is a seperate set of ILADS guidelines which is written more in the medical vernacular.

Also, there are numerous studies about treatment failures (mostly) and some successes. I have a couple in PDF form. If you want to private message me, I can send them.

IT is difficult to obtain copies of many of the studies, unless you pay for the subscription to eahc of these journals (very expensive) or are associated with a medical school.

So, it isn't that there isn't science there, its that the science isn't really accessable. Actually, this is a problem in many areas where science and public policy meet.

You can also go to lymedisease.org and they have some studies there.

Dr. S has published numerous rebuttals to the ISDA, and these rebuttals contain a list of citations (the medical studies) to suppport his arguments.

But most practicing physicians don't have the time to read all that and make up there own mind, so they rely on a few "experts" to tell them. In all fairness, you expect the "experts" to weigh evidence carefully. But that just hasn't been the case here.

A great book expalining all this is Pamela Weintraubs book on Lyme. She is a scinece writer, plus she and her family had lyme, and she did a remarkable job pulling the science together.

Finally (whw, bet you thought I'd never get there!) There are a lot of diseases that use treatment protocols not listed in any guideline. And for those that do, they have many more options than us.

*** edited to remove LLMD's name ***

[ 12-28-2010, 09:55 AM: Message edited by: sixgoofykids ]

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Hi Amanda, thanks for your reply..

Yes, I know that Dr. B's guidelines are not specifically the ILADS protocol, but a lot of Lyme patients do mention them and share them, and since Dr. B is with ILADS, it would be good to see him back his reasoning for them.

I've seen some of the subscription-only studies and if you're fortunate to be a university student, you can get access to multiple journals without having to subscribe to each one.

At any rate, the ILADS doctors surely have their own paid subscriptions and could summarize what is in each study without violating copyright wholesale, and cite the publications in their book if they were to write it.

Right now, ILADS or people professing to support the ILADS approach run a pretty wide gamut of treatment protocols and not enough documentation is out there to support those who use more esoteric approaches.

I've read Dr. S's (and J's) rebuttals to the IDSA and am familiar with the citations. Thank you for mentioning them. I think many Lyme patients are familiar with these. Part of what I suggest is that such rebuttals end up in the newspapers too, along with sources to educate both the medical profession and public about the research that is done that the IDSA is not discussing... put it in laypeople's terms so it's accessible to everyone, including people who know nothing about the controversy and have to be brought up to speed from zero.

I have "Cure Unknown", and found it a very informative book. I watched Ms. Weintraub's recent presentation at the Institute of Medicine workshop in October, and like her, I want to find that middle ground between the controversy between ILADS and the IDSA. Thus the name "Camp Other".

I know there are a lot of diseases that use treatment protocols not listed in any guideline, but how many insurance companies are questioning those protocols? Seems the treatment of Lyme Disease with long-term antibiotics has become a real hot button issue for insurance companies, even if states have passed laws to protect doctors who will use this treatment.

** edited to remove doctor's name, please see terms of use **

[ 12-23-2010, 10:45 PM: Message edited by: sixgoofykids ]

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momofthree
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Thank you Camp Other for saying what I was trying to get out. Having three kids, a sister, a niece, a nephew, two best friends and myself ill...I know we are all totally different.

I have been working very hard to get my town to acknowledge this disease. It is difficult because there are very few llmds in our state and each one is wildly different from the other.

There are llmds who demand $1000s of dollars to help. What about those who could never begin to afford these rates? Is their lyme cure only for the rich?

There are a few llmds whose prices are affordable to all but they are far and few between.

I have read the ilads guidelines and I am lucky enough to have a doctor who follows them. I am also lucky that I did respond to antibiotics and IV's alone without all the additional stuff that some recommend. I am 17 month into my treatment and I can walk and think again.

Some of the horror stories I have heard...I had a lady call me from TN and say the only way I would get better is by taking colloidal silver. A friend called Dr. K and they want to know you can afford him first before they will even talk. And why use illegal drugs before seeing if the ones we have don't work first?

This is where the article is partially true. We lyme patients are desperate. By the time we hear this is our problem we are willing to do anything to get better.

That is why I wish ilads would help by becoming a bit more uniform. Sick people looking for help will take the first hand that reaches out. Sometimes that hand costs more than anyone can afford and sometimes it is truly just experimental.

If ilads presented a unified front, we as patients would be better able to weed out the fringe cures until the proven methods were at least tried and followed by a professional.

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Robin123
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From what I have seen in support groups, everyone responds differently to treatments because they have different illnesses, strains, transmission routes, genetics, strengths and weaknesses, internal terrain - there is no one size fits all.

And some so-called fringe cures work for some people. I've seen these folks recover. I don't think this is a situation that fits easy unified answers.

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onbam
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The best LLMD's admit that at this point, in a lot of ways, they're still flying blind. The feds have a near-complete stranglehold on research.
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momofthree, all really good points.

I feel lucky in that my LLMD happens to be pretty reasonably priced compared to what I'd heard, and s/he also gives me a reason for everything we are doing and outlines the risk. I can ask him/her what is absolutely essential for my treatment, what would help somewhat, and what would be nice but not necessary - based on my insurance and outside income - and s/he tries to help. I'm sure others can do this with their LLMDs, but the truth of the matter is, I don't know - I only know who the most high profile docs are and how much experience they have.

My LLMD is also pretty much of the philosophy to try using meds that are tested and known to work first and see how you respond - before taxing your immune system and liver too much. I guess it's like moving through an allergy elimination diet?

I think my LLMD is pretty good, and I want everyone to have the kind of care (and caring) I've received. I feel sad and angry when others have to travel so far just to find someone to treat them, and more so if it's so hard for them to afford it.

The real problem, of course, is not having more primary care physicians be willing to make the decision independently to treat patients as needed and insurance companies unwilling to pay for treatment. I really see the insurance companies as the most difficult part of this, because if they just trusted the doctors' decisions as we choose to trust, then we wouldn't be in this situation. And if patients are unhappy with their doctors, it is they who should be dealing with it and not the insurer, IMO.

Yes, I know it's more complicated than that, but in some places where they do not have private insurance taking over everything, doctors still have some power to independently treat patients based on their own experience and research. Still, it's a problem nearly worldwide that the same guidelines try to get pushed on everyone.

Robin123,

I understand what you're saying, and I agree. Everyone has different backgrounds and we can be infected by multiple Borrelia genotypes and other microbes just from one tick bite. But I still think that it would be a move towards greater professional credibility if they put together a book that explained the how's and why's behind certain treatment choices, e.g. using this drug for cell-wall deficient forms, this kind of drug for blebs, etc; to explain the Dearborn conference and test profiles and backing it with documentation. It doesn't have to cover the individual patient - only has to be a core approach and scientific publication. Anything that doesn't apply to this core that varies greatly between doctors can stay out of the book, but be suggested by doctors for individual patients, perhaps?

Right now, I see what's mentioned as being really scattered and bits and pieces on different conference DVDs/CDs I can't afford, and the closest documents that come to explaining choices come in the documents ILADS presented to the IDSA for the July 2009 guidelines review meeting.

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One more thing: I wish I had a solidly researched professional publication that ILADS doctors and academic researchers designed together that I could give my primary care physician so s/he could understand the reasoning behind my LLMD's treatment. So far, s/he's supportive and just sends me to my LLMD when something is out of his/her league, but s/he is at least willing to treat me and try to provide a second opinion. S/he admits s/he is in over his/her head when it comes to Lyme, but knows something is up when I show up at his/her practice and have a fever almost every time.
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momofthree
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This is exactly what I am talking about. Just an explanation for the big picture so our PCs have some idea what is happening. Everyone is different but there are some similarities and patterns that exist for all.

I see it in my docs eyes when we are rattling off symptoms and something he has heard triggers the aha moment and he goes to his list and looks at what meds are necessary.

Thanks Camp Other for hearing me and not judging my opinions.

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Amanda
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I agree that some LLMDs are priced way to high. Also agree that some of the "treatments" are questionable at best. And I agree that it would be much better if newspapers put both sides out there.

But to be fair

1. Many times we do not have control over what newpapers or other TV reports say. Just look at the artciles published in Chicago tribune and LA time recently. They have been flooded with e-mail debating some of their points (go to CALDA.org for a good summary of this). But they don't publish it.

2. Many LLMDs spend at least 30 minutes with each patient. Your everyday GP gets paid around $70 for every 10 minutes of time. That is $230.00 for every half hour. Add to that the high cost of medical malpractice insurance (just so you know, this can be 50K a year) because they presribe long term and/or IV abx.

Also, anytime you see a specialist (which is what many LLMDs are), costs are higher, especially on the first visit.

LLMDs are flooded with patients, overworked, are dealing with seriously ill and suffering patients calling them night and day. The insurance companies are suing them, they are kicked out of their medical groups, denied hospital privilges and are often marginalized by their local medical community. How would you feel if all your collegues trashed you constantly, and you had not hope of every working anywhere except for yourself?

So, I think we need to cut out LLMDs a little slack.

Finally, I have gone through about 8 GP now. I just lost my current GP. Why? because the medical group they belong to found out they have a patient with lyme taking long term abx. They are told they either a)have to get all their lyme patients off long term abx and give them another diagnosis, or b) have to stop seeing me. Then they are told if they don't abied, they will be thrown out of their medical group and stripped of hospital privlages.

Not many GPs are willing to do that. Either they can't handle all the paperwork and insurance BS, and/or they have other very sick patients with other medical conditions and they need to stay connected to the rest of the medical coomunity. So, they choose the lesser of 2 evils. Which is unfortunate for us, because we are the "lesser"

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Amanda,

A few thoughts:

1) I know, I've seen what the papers are doing and the articles are syndicated, so they go to press in more than one paper simultaneously if not in succession. I think that instead of just posting our comments there - knowing they aren't all getting published - working with other presses to get information published is the way to go. I'd also try the best of the progressive press and more hard-hitting investigative magazines like The Economist.

I also think that my letter won't have much weight - but if someone like Dr. B, who discovered Bb, or Dr. V, who believes in persistence and basically lambasted the IDSA in a 10 page missive - were to go to the papers to discuss their research and evidence, then that would take this discussion to a whole new level. I know patients know about their work, but what about the general public? Not so much.

2) I understand the issues of cost for LLMDs. I know that my LLMD spends an hour with me and how much it costs is pretty good relative to my primary care doc who spends that 10 min you speak of. I'm willing to pay my LLMD what s/he gets given the situation. HOWEVER, I do take issue with the fact that most people can manage to scrape together the money to see my LLMD, when there are other LLMDs who charge significantly *more* and many if not most people can't afford them. They should be consistent and fair in their pricing, and try to help each patient get treatment based on what they can afford and what insurance actually will cover (for example, my insurance has covered most of my oral tx including Mepron, though if I needed IV, I'd likely not get more than the standard month).

I know my LLMD is hard to get an appt. with. I do cut him/her a lot of slack. I have a harder time cutting certain ones slack, I guess.

OMG - your current GP got censured for giving a patient long term abx? That's horrible. I wonder what would happen if your GP found out you were infected with some other infection if they would be permitted to treat you with long-term antibiotics? What about antibiotic-responsive rheumatoid arthritis?

This is the thing I'm annoyed with. If the science proves persistence, then doctors should be allowed to make the judgment to prescribe more antibiotics if clinically indicated. I keep thinking more doctors and doctors organizations have to learn about the persistence studies through the research itself.

[ 12-31-2010, 07:27 PM: Message edited by: Camp Other ]

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