Can someone please (rationally) explain the motivations for the IDSA to have set up its guidelines to only have 30 days (or whatever) of treatment? What is their stated rationale? Why do they stand up against ILADS type treatment? What's the reality? If there's a money trail to be followed, please explain. Thanks.
Posted by nomoremuscles (Member # 9560) on :
pam Weintraub, in her book Cure unknown, did an excellent job of untangling the many threads of this mess. It's very complex, and dates back to the beginning days of Lyme research and some flawed reasoning by the key players (still in charge).
You might want to read the book.
Posted by thomasx (Member # 13431) on :
I have ordered the book, but thought I'd get the "skinny" on it from this crew while I wait. What are the bottom line points and do they make sense?
Posted by adamm (Member # 11910) on :
No one knows for sure at this point, but strongly seems that it has to do with the TBIs' role in biowarfare.
lyme-rage.info undertheeightball.com
[ 19. January 2009, 05:37 PM: Message edited by: adamm ]
Posted by sutherngrl (Member # 16270) on :
I think they are working on a vaccine, the first one didn't work. Yes, they need a vaccine for an illness they say is very hard to catch and very easy to cure. Go figure???
Money is almost always at the root of all evil. Not sure that the IDSA has anything to do with the biowarfare part, but then again who knows.
I believe that they are making money off of us being ill. I don't know why they would care if we took a bunch of antibiotics. How does that hurt them? Has to be a money thing. GREED!!!
Posted by nenet (Member # 13174) on :
Hi Thomas,
It is my undestanding that the main motivational factors are conflicts of interest involving:
1. Insurance company's doctors on the IDSA board (doctors that are employed by Insurance companies to help them deny coverage). Insurance companies are not keen on Chronic Lyme being a real entity, as it is extremely expensive to treat - some say as expensive as AIDS. This is a very important facet.
2. Those with a vested interest in patents and products (vaccines, tests, etc.) that relied heavily on their own biased research and conclusions about Lyme to create and back up their products.
3. Those with a history in these conflicts of interest who may no longer be involved in the first 2 categories, but are still attempting to provide cover for themselves and others involved.
I hope I got this correctly - it is a very complex topic. You may want to read up on the Connecticut Attorney General's case against them, the findings (that there was indeed conflict of interest *AND corruption*, even beyond what I mentioned here), and the settlement.
Posted by thomasx (Member # 13431) on :
Anyone else? What are their arguments (IDSA's arguments)? What's all of this stuff about patents and test kits, etc.? There's got to be something here!!
Posted by thomasx (Member # 13431) on :
nenet, (first thanks for the reply)
Although I can see some cases being expensive with IV treatment, etc, I can see many being relatively inexpensive to treat. Antibiotics, particularly those being used for Lyme treatment, are relatively inexpensive drugs. They pale in comparison to say proton pump inhibitors, etc. Very cheap. And insurance companies cover very many other very expensive conditions.
Just some thoughts. I want to get a better understanding of this thing!
Posted by thomasx (Member # 13431) on :
What are the patents and products, test kits and vaccines that are making the IDSA money? How does that all work? There is no vaccine now, right? Who is using the test kits?
Posted by nenet (Member # 13174) on :
Thomas, you might want to see the documentary "Under Our Skin" for a brief synopsis of this topic, and also to get an idea of what the general Chronic Lyme treatment cost is. It is on average about 50-100k to treat a late stage Chronic case. I think that maybe the low end of average.
Remember, we are talking late stage Chronic Lyme, not caught right away and treated with normal antibios for a few months if you're lucky.
1. If you consider treatment for many takes many years.
2. You don't just take cheap generic antibiotics, but top of the line or new antibiotics, or IVs, or IM shots, etc. You will also need the Hospital visits/Radiologist visits to install PICC lines etc. home care nurses to clean the lines each week, Heparin and other drugs and solutions to use with the IVs.
3. Then you have in MOST cases, coinfections - the drugs are multitudinous and expensive.
4. Constant testing, blood, liver, gall bladder, etc, for signs of toxicity or disease process, etc..
5. Trips to the ER for life-threatening issues - for many (like me), there are cardiac, CNS, and neurolgical involvements that can cause life-threatening events.
6. Doctors that treat Lyme that Insurance companies refuse to cover, due to Lyme treatment costs. This gets extremely expensive.
7. Surgeries for Lyme-related organ problems, or spinal problems, eyes, etc etc
8. Therapy for pain, injury, cognitive loss etc. etc.
9. Drugs for other problems that arise from long-term lowered immunity from Lyme and coinfections.
I could go on and on.
How long have you been dealing with Lyme, if I may ask? I wish that it were a cheap disease to treat!
I have only been in treatment since I was diagnosed in 2007, and we have already had to spend a ton on health bills (some thankfully still covered by my insurance - and i can't even manage the big gun antibios or IV, or to treat coinfections yet! (I took out actual numbers as that is too personal)
Posted by thomasx (Member # 13431) on :
I've been dealing with it since Spring of 2007 also.
Back to your points, so let's say it's expensive. What does the IDSA care? They are just a professional organization, no? Wouldn't they benefit if more patients were being treated? That would certainly provide more business in their own offices?
Again, just trying to explore this a bit! Posted by Keebler (Member # 12673) on :
-
This does not explain WHY the IDSA chooses to wear blinders.
Still, this author does as good job in explaining why patients need a special kind of doctor (ILADS-educated LLMD) and why they need to stay far away from the other (IDSA).
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" - By Virginia Savely, RN, FNP-C
As two medical societies battle over its diagnosis and treatment, Lyme disease remains a frequently missed illness. Here is how to spot and treat it.
Excerpts:
Meet the players
The opponents in the battle over the diagnosis and treatment of Lyme disease are the Infectious Diseases Society of America (IDSA), the largest national organization of general infectious disease specialists, (and)
and the International Lyme and Associated Diseases Society (ILADS), an organization made up of physicians from many specialties. ( www.ilads.org )
ILADS, by contrast, asserts that the illness is much more common than reported, underdiagnosed, easier to contract than previously believed, difficult to diagnose through commercial blood tests, and difficult to treat, (especially)
especially when treatment is delayed because of commonly encountered diagnostic difficulties ( http://www.ilads.org/guidelines.html - Accessed April 6, 2007).
. . .
" . . .To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . . ."
`` . . .Patients with Lyme disease almost always have negative results on standard blood screening tests and have no remarkable findings on physical exam, so they are frequently referred to mental-health professionals for evaluation.
"...If all cases were detected and treated in the early stages of Lyme disease, the debate over the diagnosis and treatment of late-stage disease would not be an issue, and devastating rheumatologic, neurologic, and cardiac complications could be avoided..."
. . . * Clinicians do not realize that the CDC has gone on record as saying the commercial Lyme tests are designed for epidemiologic rather than diagnostic purposes, and a diagnosis should be based on clinical presentation rather than serologic results.
- Full article at link above, containing MUCH more detailed information.
-===
Co-infections (other tick-borne infections or TBD - tick-borne disease) are not discussed in the Savely article due to space limits. Still, any LLMD you would see would know how to assess/treat if others are present.
==========================
AFTER reading the Savely article above this will make more sense and, sadly, shows the state of treatment:
Attorney General Richard Blumenthal today announced that his antitrust investigation has uncovered serious flaws in the Infectious Diseases Society of America's (IDSA) process for writing its 2006 Lyme disease guidelines and the IDSA has agreed to reassess them with the assistance of an outside arbiter.
If I may refer you back to my original post, I covered why they would be against this.
Number one, for example - there were doctors (I forget how many) that were on the board that worked directly for Insurance companies. This one is very big. Insurance companies have a huge vested interest.
I can't make it any clearer than that. Not right now, anyway.
I am tired and feeling a bit pummeled by the seemingly circular questioning right now. Hopefully someone else can converse with you on this matter at morre length.
[ 19. January 2009, 06:30 PM: Message edited by: nenet ]
Posted by thomasx (Member # 13431) on :
Thanks for your input. Didn't mean for you to feel pummeled. Please jump back in any time if you want!! Tx
Posted by thomasx (Member # 13431) on :
Thanks Keebler. I'll have to wade through that stuff.
Posted by nenet (Member # 13174) on :
Hey Thomas, no problems, I'm just a little overwhelmed today, and I normally cannot handle a full conversation online, I usually just drop a post here or there when I have the energy, so this took a lot out of me.
To your questions, I really think it would help clarify the issue for you if you would read up on the CT Attorney General vs IDSA case.
Keebler, Great advice. I couldn't agree more. I think that it applies to Lyme in general. Don't let it define you (in as much as you can). My treatment is very active. This question about the IDSA is just a little loose end that I thought I'd investigate. I'd like to better understand it for when I'm talking with others who wonder why you just can't go to your normal doc for Lyme. Regards.
Posted by Jason21 (Member # 16393) on :
As stated above, the IDSA Guidelines issue is covered very well in the book, Cure Unknown. I did not fully understand the politics of LD until I read the book. It is a very easy read, almost like a suspense novel with a lot of science thrown in. Even though I now understand and know the facts, I still cannot fathom how rational human beings could have the attitudes and opinions that the IDSA doctors have had.
I believe the motivating factors for the IDSA members were (1) Ego , (2) Power, and (3) Greed, in that order, with the real problem being that certain people cannot EVER admit they are wrong; the extra money was just a perk.
Posted by LLYME (Member # 18687) on :
quote:Originally posted by adamm: No one knows for sure at this point, but strongly seems that it has to do with the TBIs' role in biowarfare.
lyme-rage.info undertheeightball.com
It has nothing to do with bio-warfare, it does not even make sense.
It boils down too money and ego. There is conflict of interest between the people who wrote the guidelines and insurance companies, companies that produce testing for lyme, etc. Lots of egos, politics, and money involved. The film "under our skin" has a great overview of this.
Some of the people responsible for coming up for the testing of Lyme are on the board who wrote the guidelines. There is lots of money to be made on the testing of Lyme and they do not want to omit or simply do not believe that the tests they designed are flawed. Also the insurance companies have a lot of money to loose if they have to pay for how Lyme should be treated. Some of the people who wrote guidelines are tied to the insurance companies.
Posted by TerryK (Member # 8552) on :
As others have said, "Cure Unknown" will help you understand many of the issues.
In my view, ego, fear of loss of reputation, power, politics, money, the medical-industrial complex methodology which often lacks application of common sense in favor of other, more favorable decisions that reflect their own interests, confilicts that are mostly unchecked and probably plum island with likely culpability of the government all play a role in this mess. There are probably other factors involved that we know nothing about.
It is complex and will take time to fully understand. Start with Cure Unknown and consider reading Lab 257.
Terry
Posted by eric555 (Member # 18343) on :
I say its a mix between the Insuarance companies, greed, money and corruption of IDSA,
and ofcourse there is that of the test labs for Bio Warfare, which they claim is now for Offensive reasons, which is very careully being hidden from us all...
But one day the truth shall come out.
And hopefully Cures.
Posted by Snailhead (Member # 18091) on :
There is one more factor in this, in that IDSA does not like people on long term abx for fear of "super bugs" that will not respond to treatment.
Posted by Keebler (Member # 12673) on :
-
And to that, I say Snailhead has a point. And for (regular) folks who want an abx at the drop of a hat for sniffles, etc. this can pose a problem.
Still, they should not ignored. They should get good evaluation and treatment and not just pushed away. But it may be more far reaching that the old abx Rx. and that's too much work for some doctor's with their short appointment.
Still, regarding chronic stealth infections such as lyme or Cpn or mycoplasma . . . the IDSA has not thought this out - it's inhumane to not treat someone who has a serious infection for fear they will develop resistance to a bug they may (or may not) get in the future.
And, for those with sniffles, etc., if we did a better job at understanding and thoroughly treating various kinds of infections (whether bacterial or viral or fungal) and supporting the body, some infections might not go on to become huge problems down the road.
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Posted by TerryK (Member # 8552) on :
Yes, I agree with Snail. It is a valid concern however the stance of the IDSA is that we are people who don't really have a bacterial infection because there is no such thing as chronic lyme.
According to them, we are demanding abx for illnesses that cannot be helped with abx. Some "Lyme authorities" also state that our symptoms of pain, fatigue etc. are the normal symptoms of ageing!!
So, rather than admitting that chronic lyme exists (and of course they know it does regardless of what they say) and getting on with the business of getting funding for proper studies, developing drugs to cure this disease etc, they seek to deny a large group of people any help at all for greedy reasons.
Their concern over "super bugs" is ironic because lyme *is* a super bug and we are in an epidemic. Nothing they say will change that fact and history will not remember them kindly for their greed and deceit.
Terry
Posted by pigwit (Member # 9059) on :
The theory that the antibiotics for Lyme should be brief to avoid antibiotic resistant bugs doesn't make sense.
It makes more sense to continue the antibiotic because dead bugs don't replicate. Stopping antibiotic before the infection is cleared makes additonal super bugs more likely.
Also, the book, Cure Unknown stays away from consipiacy theories.
Posted by bettyg (Member # 6147) on :
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