IDSA vs ILADS – why there is a chronic Lyme conflict

We are very happy for this guest posting by Lisa Hilton, USA!

While you’re reading this fascinating background to the chronic Lyme conflict, we want you to ponder some questions and answer to them in the comments if you have any thoughts:

How come IDSA is still trusted after these reveals (see below)? 

Why does the CDC use the IDSA guidelines? 

Why does the rest of the world follow the IDSA guidelines?

*******

The Two Lyme Camps
First there is the IDSA side. The IDSA, (Infectious Disease Society of America) states that it is easy to diagnose, simple to treat, and easy to recover from. They recommend anything from two pills of doxycycline to take care of a lyme infection to three weeks of oral doxycycline.Note: While IDSA is a private professional organization, it has government preference over the other nonprofit organization, ILADS. The CDC’s website links to IDSA’s guidelines instead of ILADS’ guidelines.Since the CDC subscribes to the IDSA’s guidelines, doctors fear medical board investigations and censure if they treat outside of those guidelines. This limits the doctors as to how they can treat us. It takes away their being able to make their own judgement calls. For example, if their patient takes all three weeks of doxycycline, and is still showing symptoms, the doctor can be under scrutiny from the medical board if they should decide to give them another prescription. The insurance company will want to know why the doctor is prescribing more meds and they will refuse to pay anymore of the patients bills stating that they have already taken the full treatment and should be cured now according to the IDSA guidelines.Consider this: *The IDSA’s guidelines state: ”Clinical findings are sufficient for the diagnosis of erythema migrans, but clinical findings alone are not sufficient” to diagnosis other signs of Lyme. Patients without an EM rash (bull’s eye rash) must have 2 positive Lyme tests ”using the 2-tier testing algorithm recommended by the CDC.”

Then consider this:
*CDC’s surveillance definition, which states: ”This surveillance case definition was developed for national reporting of Lyme disease; it is not intended to be used in clinical diagnosis.”

Further consider

* The CDC reports that only 68% of Lyme patients meeting its surveillance definition have EM rashes.

* Its two-tier test requires positive ELISA and western blot tests for a diagnosis. The CDC relied on studies showing that this two-tier approach had sensitivities of 33% and 57% for early-and late-stage Lyme respectively. This leaves 22% of patients untreated with early-stage Lyme and 43% untreated of late-stage Lyme, since standard EM rashes disappear in early-stage Lyme.

* The IDSA guidelines recommend only up to 28 days of antibiotics, even for late-stage neurological Lyme. They say: ”There is no convincing biologic evidence for the existence of symptomatic chronic B. burgdorferi infection among patients after receipt of recommended treatment. Antibiotic therapy has not proven to be useful and is not recommended for patients with chronic Lyme for more then 6 months with subjective symptoms after administration of recommended 10-to 28-day treatment.

Yet, the same IDSA panelists said elsewhere that Lyme’s successful yield rate for blood cultures is below 10%. So why do the IDSA guidelines call these cultures the ”gold standard?”

* The guidelines rejected a study that used a new method to culture the bacterium in 97% of 47 guideline-treated patients because the germ was found with microscopes, not DNA tests, and because two other studies with 22 guideline-treated patients couldn’t culture it.

* The IDSA’s guidelines will not say ”Chronic Lyme,” instead they state that chronically ill patients suffer from post-Lyme syndrome. This is defined as ”unexplained chronic subjective symptoms following treatment with recommended antibiotic regimens.” It is their way of denying persistant infection and making it seem there is another reason for ongoing symptoms.

In 2006, an antitrust investigation was initiated by Connecticut Attorney General Richard Blumenthal. Here are some of the reasons for the investigation.

1. Lyme Guidelines suggest relying upon inaccurate testing to diagnoses Lyme. Many doctors believe that they should diagnose Lyme based clinically (based upon symptoms).

2. The IDSA says its guidelines are voluntary, but the truth is, major insurers use them to deny coverage for long-term antibiotic treatment, limiting patients in getting the appropriate long term treatment they need. We are in an insurance-dominated environment, and insurance companies and hospitals use economic profiling to pressure their doctors to conform to cost parameters and restrictive guidelines when providing treatment.

The Conclusion of the Antitrust Investigation:

In May 2008, Blumenthal concluded the investigation and announced the flaws he discovered in the Lyme Disease guidelines’ development.

1. The investigation revealed panelists’ connections to insurance and vaccine companies in violation of antitrust principles, failure to review potential conflicts of interest such as financial interests in drug companies, Lyme disease diagnostic tests, patents and consulting arrangements with insurance companies. He found there was bias in the selection committee, and exclusion of dissenting panelists.

2. The attorney found misrepresentation of the guideline authors’ views as independent, and misrepresentation of the guidelines as voluntary. There were what they called ”improper links” between the IDSA’s and the American Academy of Neurology’s (AAN) Lyme panels. The two panels shared key members, and were working on both sets of guidelines at the same time, which is a violation of IDSA’s conflicts of interest policy. When the IDSA learned of the improper links, it aggressively sought AAN’s endorsement.” The investigation showed that their guidelines used ”strikingly similar language” to conclude that chronic Lyme didn’t exist and defined symptoms persisting after treatment as ”Post-Lyme Syndrome” also in the same way as the IDSA. Then the IDSA portrayed the AAN’s guidelines as independent corroboration and tried using them to defeat legislation supporting long-term Lyme treatment.

3. Failure to significantly evaluate contradictory evidence. Doctors were pressured to conform to the beliefs that Lyme was not chronic.

The guidelines reported conflicts of interests for five IDSA panelists:

1. Dr. Gary Wormser, the panel chair, received funds ”from Baxter and Immunetics, and is one of the founders of Diaspex. Eventually discovered also was that Wormser disclosed he was receiving grants related to Lyme disease from Bio-Rad, Biopeptides, Merck and AstraZeneca, owning equity in Abbott, and being retained in some medical-malpractice cases involving Lyme disease.”

2. R. J. Dattwyler, is a speaker for Pfizer and a part owner of Biopeptides. Later is was discovered that Dattwyler disclosed he had a financial connection to Baxter and serving as an expert witness in medical malpractice actions

3. J. J. Halperin, an expert witness on behalf of Lymerix (GlaxoSmithKline) the failed Lyme vaccine.

4. Allen C. Steere is a consultant for Baxter and P. J. Krause. This is a developer of a diagnostic procedure for a coinfection of Lyme. Later disclosed was that Steere has a financial connection to GlaxoSmithKline and Viramed.

5. Dattwyler elsewhere disclosed a financial connection to Baxter and serving as an expert witness in medical malpractice actions, and Steere disclosed a financial connection to GlaxoSmithKline and Viramed. (51) A sixth panelist, Eugene Shapiro, elsewhere admitted to receiving grants for Lyme vaccines, testifying in Lyme-related medical malpractice actions, and reviewing Lyme disability claims for Metropolitan Life Insurance Company.

Later discovered also was that another panelist, Eugene Shapiro, admitted to receiving grants for Lyme vaccines, testifying in Lyme-related medical malpractice actions, and reviewing Lyme disability claims for Metropolitan Life Insurance Company.

And this is the panel we rely on to help us who are suffering with Lyme get the care we need?

Final Outcome

The attorney general’s antitrust action resulted in a settlement, which required that the guidelines be reviewed by a completely new panel that is free of conflicts of interest and represents a range of views.

New Issues

Many Lyme patients were not happy with the resulting review panel because its chair was a former IDSA president. The new panel elected totally excluded any candidates who supported long-term treatment. Lyme advocates felt like the new panel just ended up being ”more of the same.” The final blow came when the new review panel’s final report decided that even though they thought the guidelines should be updated to give doctors discretion in diagnosing patients who have a high probability of Lyme but only equivocal tests, but that antibiotics are still not recommended to treat patients beyond a short 28-day treatment. Still no long term treatment was thought to be necessary.

The attorney general also found that the IDSA failed to follow its own procedures for appointing panelists. The IDSA’s procedures say that guideline panels should have a wide range of experts, therefor hearing all sides of different views. They also are strongly encouraged to include members of relevant professional societies and to work toward consensus. But the attorney general found that the 2006 Lyme panel’s chairman had handpicked a like-minded panel without the IDSA oversight committee’s approval. When a dissenting member of IDSA’s 2000 Lyme guidelines panel had different opinions and argued that chronic Lyme exists, the panel pressured him to conform, and removed him when he refused. When scientists with differing views on chronic Lyme sought to join the 2006 panel, IDSA told them that it was fully staffed, although later they hired more like minded panelists.

Again, like the 2000 panel, the 2006 Lyme panel was clearly biased. They then proceeded to write the guidelines in a flawed manner. Here is the attorneys’ findings.

* The IDSA left out any research that didn’t fit into their definition of Lyme and refused to even consider information regarding the existence of Chronic Lyme.

ILADS

International Lyme And Associated Diseases Society

Their description from ILADSILADS is a nonprofit, international, multidisciplinary medical society, dedicated to the diagnosis and appropriate treatment of Lyme and its associated diseases. ILADS promotes understanding of Lyme and its associated diseases through research and education and strongly supports physicians and other health care professionals dedicated to advancing the standard of care for Lyme and its associated diseases.The ILADS guidelines are what most Lyme doctors go by. They promote long term treatment, and diagnosis which can be based on clinical diagnosis.Which, doesn’t this make sense? If you were being treated for strep throat and at the end of your antibiotic treatment you found you still had a sore throat, would your doctor not prolong your prescription of anitobiotics? Would he not try a new one? Would he tell you it’s cured, or it’s all in your head and you are not really sick?ILADS has a list of research that backs up their claims that Lyme Disease is a chronic condition caused by a persistant infection. To See Research Click Here.

Annonser

21 responses to “IDSA vs ILADS – why there is a chronic Lyme conflict

  1. Lorraine Johnson should receive credit for instigating and pushing the civil investigation from start to finish. http://lymedisease.org/news/lymepolicywonk/35.html

    Lorraine Johnson borde få kredit för anstiftan och driver den civila undersökningen från början till slut. http://lymedisease.org/news/lymepolicywonk/35.html

  2. this ”background” leaves out sooo much IMO. why arent we asking about ILADS’ membership? many hucksters and marketeers, who arent even doctors or close to being defined as a medical professional are allowed there. If ILADS cant come to the table with clean hands and accountability, they cant expect respect. What about the ”guidelines” from ILADS? they havent been revised and republished for YEARS so there isnt anything patients can use to refute insurance denials.. We have heard too many excuses why this is.
    what about leadership of ”support groups” who have too much invested in promoting this supposed war? Too many egos and life’s invested in nonsense IMO.and finally why 2 camps with an either or position? what IF the answer lies between them? what IF some patients are indeed per IDSA–easily treated and cured, while SOME patients are experiencing relapsing or persistent Lyme and many falling betwwen..? what IF some even DO have Post Lyme and shouldnt be on antibiotics for years? we need to be able to tell who these all are/will be and adjust treatment accordingly.
    the problem with supporting and poromoting a ”them” vs ”us” war is that we the patients have seen ZERO progress in 25 yrs.. and we are ignoring the reality that the answers lie between and among BOTH camps.
    I have an idea…what IF we ignore the stupid war? what if instead we model after the Cystic Fibrosis community..set up a foundation independent of all camps. out of the hands of support groups etc. and the foundation serves to get the research done.and then report back results upon which treatments can be based. the support groups can simply raise money and after they get the results from the foundation,,disseminate the information gleaned. NO politics NO war, NO queens. win-win-win. EXCEPT they are all fighting this or ignoring this option,so who is the real enemy among us?Did you know by not investing into a political war and by not investing in the mess Ive seen in Lyme, the CF people have CURES..thats right CURES. ( for a high percent but not all- but their research continues). and it only took a few years. NOT the more than 2.5 DECADES its taking us to go nowhere. Lyme community isnt EVER going to FORCE the IDSA to change their minds. Or to force CDC and NIH to stop listening to IDSA. and you know what? it dont matter IF we all stop this craziness about camps and wars,and get research and use the data to effect treatments. . why are we all still suffering when the answers are in the labs and research ,just so the egos are fed? enough protests that havent worked in 25 yrs, enough green letters and enough half information thats as biased as IDSA.
    and btw i also see Lisa left out how the war started—for which i was an unwilling witness and IMO blame can be placed in BOTH camps’ laps! we have GOT to stop demonizing IDSA while we have demons among us, and make it all not matter—energy and money must be towards an INDEPENDENT foundation that drives RESEARCH which will prove what it will prove.and for which no one can deny. who needs treatment and which treatment.

  3. We’re more than willing to cooperate with all researchers and doctors interested in curing Lyme disease, we’re not interested in a war, there’s a post in Swedish about that, right before this one, maybe you can google translate it. We haven’t had a Lyme war in Sweden until a children’s doctor here recently started one, together with anti chronic Lyme advocates (out of which none ever treated very ill Lyme patients), trying to make people believe their false statement that chronic Lyme doesn’t exist and that it’s congagious only through the internet. We just want the truth to get out there, so people know why many doctors around the world are following the IDSA line, probably without knowing why themselves in many cases.

    Here’s much interesting info as well, especially the info about the many peer reviewed studies about persistent Lyme:

    http://www.change.org/en-AU/petitions/the-u-s-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf?utm_source=supporter_message&utm_medium=email&utm_campaign=petition_message_notice

    • the truth IS very important. ALL sides of it. Perhaps if we try to present ourselves better (in the US too many make themselves spokespersons and then present hysteria and nonfactual statements which makes us all look bad), and we also simply get and then present the research, the science should stand for itself. Yes I agree its a shame when Drs around the world listen to some Drs in IDSA. Drs are human, some are stupid, some have big egos, some just want to charge a fee and treat like a cookbook. Others realize that illnesses like Tick Bornes are too complex to declare them simply treatable.
      I hope that others around the world learn from the mistakes of US Lyme Groups,. That others try to avoid getting into the ”war” and instead fight for research and fight to have the results of that research accepted.
      you say ”anti chronic Lyme advocates”..do you have people part of Lyme groups who are anti-chronic? thats a shame.
      as I stated, for SOME, they may have persistence, for some others, post lyme and for a lucky few–easy cure.
      I just hope that others around the world do NOT copy the US Lyme groups. Ive seen 25 years of what they do and how they do it…and I see US Lyme patients worse off! That says to me theyre doing it wrong.

      • Yes, the truth is important, that’s all we’re interested in…

        Meant people who don’t believe that chronic Lyme exists, and who don’t keep those beliefs to themselves but fight very hard to try to make others believe in that conviction too. A few doctors, and some other persons belonging to one network basically. Not people in Lyme groups.

      • thank you as well. you ask a very important question, [ why not reveal the few who arent clean?]. there is a silly secret society going on in Lyme. no one is allowed to say anything the leaders think ”negative”. they protect every Dr good or bad. this is part of the history that undermines us today.Because many more are actually ”profiting” in more ways than financial. some of us call them ”nests of roaches” because they spread as quickly. LOL
        also please know that in truth, the majority of BOTH sides are ”good”.. painting IDSA members as all evil isnt going to help and it isnt even true.
        btw I am glad to be getting to know you!
        the past few years I had hoped that European, Scandinavian, Mediterranean and other Lyme patients around the world would not follow the model of America; would save us all with their education and critical thinking and skepticism. Now to see that American Lyme patients have ”infected” the world..makes me sad

      • I think there’s hope for the Lyme world… Everyone just need to back off a little, and be open to try to see the whole picture (as much as we so far can see), and search for possible ways to move on to something that will work. The ideal would be a cooperation between IDSA and ILADS and others. Lots of humility needed, and a willingness to admit faults. I don’t think it could possibly work without a new IDSA board though, that can be trusted by both sides, consisting of persons with opposing views, no conflicting economical interests, and openness to listen to the other side. Or a brand new organisation replacing both IDSA and ILADS. Or more realistic: an independent organisation with people from all over the world, doctors of different opinions (but not interesed in continuing a war), researchers, people with lots of knowledge, sufferers who know how it feels from their own experiences. And zero prestige. Leaving the conflict behind and focusing on independent research, not connected to any medical companies.

        I’m only interested in what will lead forward to new research discoveries, better treatment and healing for everyone… 🙂

      • Elisa

        how is it that your post today comes BEFORE our other conversations from the past few days? I found it confusing and hard to find( sorry).

        you said
        [Or a brand new organisation replacing both IDSA and ILADS. Or more realistic: an independent organisation with people from all over the world, doctors of different opinions (but not interesed in continuing a war), researchers, people with lots of knowledge, sufferers who know how it feels from their own experiences. And zero prestige. Leaving the conflict behind and focusing on independent research, not connected to any medical companies.]

        if you have ideas on HOW to get BOTH ILADS and IDSA to step back and then get a new independent organization going–Im all ears. IMO, both groups are filled with too much ego to ever allow it.

        you also suggested a new IDSA Board–I also think a new ILADS board without Johnson and booting off all of the less than ethical sorts is in order too. and as much as that would be the right thing…I dont see it happening in our lifetime or that of our children either :{

        [Leaving the conflict behind and focusing on independent research, not connected to any medical companies.]

        this is my wish!!!

      • I saw it too, it depends on which button you or I press to answer to a posting, if we press the wrong one somewhere in the middle of a discussion, it’ll go to another thread or create a new one…. Hope this one goes where intended… 🙂

        Yes, I see the road blocks on those suggested paths, which I gave small hints of already… If it would happen, it would be great. But maybe the most realistic alternative is something independent and worldwide focused on research.

    • there is something in American Court called Clean Hands Doctrine. very simply it means that you cant go to court accusing someone of stealing, if you yourself are a thief.( for example a neighbor steals the car but its not really yours. You stole it first. the court wont help you)

      I think thats the biggest problem in U.S. Lyme world. the ILADS and many Lyme groups dont come with clean hands.
      another way to say it is : If you dont have a clean house you shouldnt call your neighbor’s house dirty.

      As an American who battles having Lyme every day and the damage Lyme did- and still does- to me, and a mother of a son who for 8 yrs since age 15, has been bedridden from lyme,, and as a Lyme advocate for almost 25 yrs , Im afraid. Im afraid for the world’s Lyme patients because they look to U.S. The Drs look to the wrong U.S. Drs and the patients are now following the U.S. Lyme groups. Be smarter! do NOT follow what the failures of the U.S. have been. Save time and save yourselves! 25 years of protests and green letters and screaming at medical groups have gotten us nowhere. I dont want to see the Lyme patients of the world go through the same 25 years of mistakes. Be smarter than we are!

      • Thanks a lot – very interesting! Will do a deeper research about this later! But even if there are black sheep on both sides (which I don’t doubt, there are always people trying to make profits on other people’s misery, have heard stuff pointing in that direction before), still the majority of one side seems to be good guys with clean hands. So why not reveal the few who aren’t, while encouraging those who are but are criticized for no actual reason? It’s a good idea with the research approach as a worldwide project.

  4. What would you recommend that we do?

    Also, can you link to info about what the other side would be guilty of?

    • Hello Elisa
      what to do? I and quite a few others have been talking about this, Step one is not following the LDA, CALDA, Time for Lyme etc etc.perhaps its time we all stop and ask ”why should we do this?” ” what end result are vwe trying to get and will this activity really do it?” ( like green letters…all that did was annoy some senators and make for a lot of shredding). ”should we be putting energy and time elsewhere?”.

      what Id like to see happen? Forming an international and independent foundation exactly like what the Cystic Fibrosis patients do as a better way. That foundation then gives money they raise ( and that support groups raise for them) to research projects. Not to projects the groups want but to projects the foundation as scientists and epidemiologists and as venture capitalists who have no pony in the race, find will give the most information leading to cures and treatments.
      Cystic fibrosis have cures with more coming!! in just a few years!!

      also what to do- stop believing and start questioning any American groups’ activities. ask who is making money and how. Where the money is going.Ive found too many book authors who didnt even have Lyme after all, selling ebooks. too many begging for charity and they maybe didnt have Lyme but even if they did, to turn their illness into a ”business” is not good for any of us IMO. Look at Rosner/BioMed’s cottage industry. Many have caught him posting on entrepreneur sites that to make money and cash in they need to find vulnerable, sick people and he did–Lyme pts. I was told he didnt like or want real estate anymore and he jumped into publishing books that ever chapter say ”if you want to know more then buy my other book”. Many find his books to be useless or dangerous and yet not one of the ”leaders” will say anything because they all make deal with each other. And many of us ( even me) has asked ILADS to throw out all non medical and non science professionals, especially book sellers, and charlatans and sellers of junk snake oils, and to clean up so when they present papers, no one ( not even IDSA) can disrespect it. and guess what? they ignore all requests.

      if you want a small hint at what is going on behind the scenes, search around Lymeneteurope. ( http://www.lymeneteurope.org) .btw they also have an unmatched science section with sooo many studies listed. its a wonderful resource IMO.
      but while there, google CALDA, :LDA and all the american groups. also look at conversations about who is making money off of our being sick.
      Ive found that a money trail is very eye opening. it shows conflicts of interest, and possible hidden agendas. See the Drs they talk about as charging so much and yet no extra patients being cured or even helped more than the Drs not charging so much.

      here is one snippet re Rosner ( who is supported by and promoted by the major US groups)
      Bryan Rosner in :http://www.fonerbooks.com/2008/05/publishing-business-model-choices.html
      telling others how to make money off of sick people, QUOTE
      ”But I also want to make money, as much as I can. I have a 7 month old and a stay-at-home wife. If I were in your shoes, with your website, I would exploit the crap out of it. I have a similar website and am doing just that.”

      yes he still does ”exploit the crap out of Lymies” and he gloats that Lyme books are an ”explosive growing market”.
      more here:http://www.lymeneteurope.org/forum/viewtopic.php?f=8&t=2392

      there are a few there at LNE who dont believe in chronic Lyme, and a few who are a bit rude and brash…but the information is honest. and its allowed to be posted.
      also look up ”lymenet” on the europe site. it will reveal who is in bed with whom.
      how Lymenet protects many unethical Drs, and marketers of useless Lyme treatments.

      other side? you mean ILADS side? if yes, in addition to the above samples,:
      just look at the Burrascano Guidelines from 10 yrs ago and today.
      10 years ago they were fine medical papers. Today they are filled with which supplements to buy and his ID for a multilevel marketing company he is part of. that means if you buy HIS suggested supplements,, dollars go to him.
      IMO and in that of others, that has no business inside a professional guidelines. AND you can get better ( or as good) supplements that are a lot cheaper elsewhere. Many find this advertising and marketing inside a guidelines to be unethical and it hurts us when we hand them to insurance. It now looks like a newspaper for marketing, not medical guidelines.
      Public health Newsletter is a marketing newspaper camouflaged as ”health news and info”. its purpose and endpoint is to make money for those advertizing in there. the ”authors” and ”marketers” are one and the same.no accountability. No making sure whats advertized really works.
      some of the most ”famous” LLMDs are also talked about at Lymeneteurope–quite accurately.

      as far as the rest…its common sense that if after 25 years of protests, and green letters, and people dressed as ticks, nothing much has changed, why would you want to keep doing it? isnt it time for a new approach?

      • Thanks a lot – very interesting! Will do a deeper research about this later! But even if there are black sheep on both sides (which I don’t doubt, there are always people trying to make profits on other people’s misery, have heard stuff pointing in that direction before), still the majority of one side seems to be good guys with clean hands. So why not reveal the few who aren’t, while encouraging those who are but are criticized for no actual reason? It’s a good idea with the research approach as a worldwide project.

      • Capn Kyndam

        Appreciate all of your information!!
        So how do we start a worldwide LYME Foundation with walks and runs to raise research money, AND AWARENESS, and find safe sprays to kill the deer tick population? I am all for getting on bored with this on the mid-Atlantic East Coast of the US. I think May 28th is even Lyme Awareness Day here. We must stop patients from going bankrupt to survive. We must end the good doctors having to hide in order to treat to avoid being sanctioned for their bravery and courage on the front lines of Lyme

  5. Very Interesting! Thanks

  6. I am less concerned about calling it chronic Lyme or post-Lyme syndrome. If the IDSA calls it the later, it wouldn’t bother me if IF THEY DID SOMETHING ABOUT IT. I don’t get the sense that they do. How can you come up with this term, then say/do nothing? Is it supposed to go away on its own?

    • If they call it post-Lyme syndrome they don’t have to do anything since it would mean it’s incurable, just remaining symtoms/tissue damages, but no infection. Which is the whole point: it’s an infection that isn’t fully treated and thus not cured.

    • Elisa I agree! but theres more to it–calling it ”post Lyme” CAN mean doing ”something” but that something would be different.
      ”post lyme” usually means treating symptoms only ( anti depression meds, anti-inflammation meds, pain meds etc) BUT if its called ”chronic” or even ”persistent” then that in doctor-language means ”still needs treating” like with anti-infectives.
      I dont like”chronic” because that can mean ongoing after effects, or ongoing infection and those are very different.
      In Dr-speak, ”chronic” simply means it keeps on giving problems as opposed to ”acute” which is short term. IDSA does think we can have ”:chronic POST LYME symptoms”. the problem IMO is their use of ”post Lyme” as in AFTER the infection
      fwiw the ILADS folks confused things by allowing :”chronic’ to be used indiscriminately.Since it can be used for both situations!

      unfortunately, in science and medicine what something is called matters. Thats why I often tell people–there may well be some with Chronic Post Lyme and also some with Chronic Persistent Lyme and even a few who have BOTH. I think I have BOTH!! I do have some post symptoms best helped with supportive treatment but I also have relapses with infection–I return to positive titers, and only anti-infective treatments help many of my other symptoms.

      btw ”chronic” can mean ”incurable” too!

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  8. This fighting between IDSA v. ILADS must stop. It is as tho IDSA is Hamas and ILADS is Israel and Lyme Disease is the Gaza Strip. ALL doctors took an oath to ‘DO NO HARM.’ Personally, I have been harmed by 6 IDSA doctors, physically and mentally, even at the *esteemed* Johns Hopkins. Chronic Lyme Disease is real. It is spread thru deer ticks, spiders, certain biting flies, and sexual contact. IDSA is greedy because they know they are mistaken, liable even. Chronic Lyme is a pandemic. Many patients are being diagnosed with fibromyalgia, fatigue, arthritis, depression and the pharmaceutical companies are making money. What if there is a cure for chronic lyme? What if this cure can also lead directly to a cure for HIV and syphilis? Vaccines lead to eradication. IDSA does not want that, so they do harm. IDSA should be drawn and quartered.

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