This is topic we shouldn't see the infection disease doctor,right in forum Medical Questions at LymeNet Flash.

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Posted by feelbetter (Member # 21957) on :
I have read some people's post here regarding about never see a infection disease doctor coz they don't know anything about lyme.So,must see a LLMD,right? is that true?
Posted by hurtingramma (Member # 7770) on :
Right! Yes, go to seeking a Dr. forum and put in a request and someone will direct you to a LLMD in PA
Posted by migs (Member # 16496) on :
We're getting a bit out of control here...

"Never" see an Infectious Disease Doc is a pretty silly statement. Chances are you'll be disappointed by a lack of knowledge on Lyme Disease and an LLMD would be more helpful but you don't know that for sure.

A lot of Infectious Disease Docs out there might diagnose you with Lyme and put you on Rochephin and get you to health.
Posted by Lymetoo (Member # 743) on :
Agreed.. MOST ID's know nothing about Lyme... there are a few who do and will treat it.

If you want the best chance at getting well, see an LLMD.
Posted by Keebler (Member # 12673) on :
This explains WHY you need an ILADS-educated or ILADS-member LLMD - (and there are a few ID doctors who are ILADS-educated in that they've read all the research about lyme but it is literally like finding a needle in a haystack. By and large ID doctors go by the IDSA criteria and they are sorely lacking).

This speaks to the differences between IDSA and ILADS and what that means for the patient.

From the May 2007 issue of Clinical Advisor



[in speaking of acute cases of just lyme, diagnosed and treated early] " . . .To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . . ."

". . .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. . ."


Lyme Disease: Two Standards of Care

by LORRAINE JOHNSON, JD (revised 2005)

[ 03-18-2010, 06:50 PM: Message edited by: Keebler ]
Posted by TerryK (Member # 8552) on :
Not unlike the history of many other diseases, there are battles going on regarding the diagnosis and treatment of Lyme Disease. Even the existence of chronic infection is being disputed.

Standard IDSA (Infectious Disease Society of America) treatment is not long enough or strong enough to deal with lyme disease. Most doctors who are not members of ILADS (International Lyme and Associated Diseases Society) use the IDSA guidelines to diagnose (or not) and treat lyme disease. This is the ruling body that Infectious Disease Doctors belong to. Most of them feel strongly about complying with the guidelines.

Many who end up at lymenet with chronic lyme disease are the result of the IDSA guidelines. Not only is their treatment of lyme disease inadequate but they do not generally test for many of the other TBI's that can be passed when one is bitten by a tick. Many people go untreated entirely because of the guidelines and thus end up suffering for years and often become disabled.

The Attorney General of Conneticut found that the IDSA guideline authors had conflicts of interest and not only did they violate their own rules (IDSA procedural rules) in developing the guidelines but they excluded anyone from participating who disagreed with this small group of doctors and they excluded any scientific evidence that did not agree with their narrow view of the disease.

In order to avoid a lawsuit, the IDSA agreed to convene a new panel (whose appointments were to be overseen by a medical ethicist) to review the guidelines in light of all the scientific evidence. We are still waiting for the outcome. The IDSA is in violation of their agreement with AG Blumenthal so who knows how long all of this will take.

Reading the book "Cure Unknown" may help put things in perspective. Written by a respected science journalist who has first hand experience with lyme and co-infections. Her book is well researched and revealing. Here is a brief look at parts of the book as presented in Psychology Today blogs - written by the author of Cure Unknown

I'm not a doctor
Posted by TerryK (Member # 8552) on :
migs said:
A lot of Infectious Disease Docs out there might diagnose you with Lyme and put you on Rochephin and get you to health.

Yes, if you fit the IDSA guidelines perfectly for diagnosis and have no co-infections and have no complications that make it difficult to get rid of lyme disease and they catch it early enough and... etc. etc. etc....

I'm not a doctor
Posted by Keebler (Member # 12673) on :
The IDSA criteria for lyme is nearly impossible to meet. I'm paraphrasing from memory but you can go to the IDSA website for criteria. The basics required by IDSA ID doctors in order to treat:

* Lumbar puncture is required and Bb needs to be found in the CSF (spinal fluid) which is nearly impossible and it's a terrible test for lyme.

* Tick bite needs to have been very recent

* Rash needs to be present

* Symptoms can not have started beyond a few days or a week's time.

* Treatment will likely be a low dose of just one Rx for a short time. Symptoms remaining beyond that will be discounted as the "aches and pains of normal living" or one will receive a psychiatric diagnosis or be told they have "fibromyalgia" and should take antidepressants to settle them down.

* No attention to the cyst form or biofilm of Bb.

* Usually, no attention to possible other tick-borne infections.

and on and on - impossible criteria.

MOST ID doctors go by the IDSA guidelines for diagnosis and treatment but not all, as Timaca's experience shows (post below). There are a few ID doctors - out there somewhere - who have expanded their education in this area.

Find out the training, philosophy and just how lyme literate ANY doctor is who is on your consideration list before you sign on. How much do they know about other tick-borne infections and other chronic stealth infections, too? How would they treat?

What criteria do they use? That is the main question?

You need to do background search as if your life depends on it because it does.

[ 03-18-2010, 04:40 PM: Message edited by: Keebler ]
Posted by timaca (Member # 6911) on :
I see two wonderful ID doctors. They have evaluated me for many pathogens...HHV-6, EBV, enterovirus, Cpn and lyme. They treat what is most obviously wrong, not the maybes. And in me, there has been a lot of things wrong. I am much better because of the care of both of these ID doctors.

Get evaluated for a lot of things, and include all kinds of doctors in your evaluations...even an ID doctor. To not get thoroughly evaluated by a lot of doctors means you could miss one or two or several things that are affecting your health.

If I could clone these two guys and have you all see them I would. They are wonderful.

Best, Timaca
Posted by TerryK (Member # 8552) on :
Glad you are having good results timaca. I was talking specifically about lyme disease based on my own experience and that of many posters here and on other forums. Aside from ILAD's ID's, your experience seems to be very rare according to the many accounts I've read over the past 5+ years.

That said, I agree that it is a good idea to be checked for anything that might be causing your symptoms. My LLMD is the only one that I found that showed any interest in checking for viruses and we did find quite a few. Seems to be common in lyme patients.

A good LLMD will check for any illness that could mimic the symptoms of lyme disease.


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