Lyme Disease Support Group

I was asked about my LLMD's credentials and the credibility of the information I brought in. It was mentioned that infectious disease doctors are trained and specialize in this disease and that family practice type doctors are trained in multiple area's (not concentrated/specialized training).

The Nuerologist discussed the harm of long term antibiotics use. Additionally, studies have not shown evidence that long term abx use is beneficial. I also mentioned another treatment plan my LLMD recommended. I am gearing up for the Infusion Intravenous Therapy to treat babesia. The Nuerologist appeared to be concerned with this and advised me of the dangers. Really scared me...

It was recommended that I research a few other sources of information...

www.pubmed.com

www.idsociety.org

[/url]www.emedicine.com

I was happy that the Doctor took my information and intended to review it and that the additional resources were given. That means the doctor was listening.

I was wondering if you would share some of your experiences with infectious disease doctors. I'm considering meeting with one just so I completely understand why there is such a controversy with treatment.

I just want to be able to determine what path to take in beating this disease. Your experience and knowledge are much appreciated.

Thanks again

As you can see, there are two types of docs in this whole thing. those who are lyme friendly, actaully care and understand the disease, and those who follow the lovely guidlines that keep people sick.

you need to follow what is in your heart, and keep talking to people, keep reading. You'll figure out what's best for you.

If long term antibiotics scare you, there's always the natural way to persue as well. Just please, if you really think you have lyme, don't let some doc tell you that 30 days of antibtiotics will cure you and you'll be on with the rest of your life. i've NEVER seen that happen.

Poppycock! To what your doctor said.

You're getting the all too familiar propaganda that the IDSA puts out and practically insures that people won't get better.

And, please don't think that meeting with yet another ID , thinking that a logical or reasonable conversation with him will resolve this problem.

[One note---- there HAVE been some isolated ID docs who actually think for themselves. But most will follow the party line.}

Here are just a very few lies/excerpts put out by the IDSA.

http://www.ilads.org/guidelines_idsa.html

****Administration of doxycycline (100 mg twice daily) or amoxicillin (500 mg 3 times daily) for 14–21 days is recommended for treatment of early localized or early disseminated Lyme disease *****

****Lyme arthritis usually can usually be treated successfully with antimicrobial agents administered orally or intravenously. Administration of doxycycline or amoxicillin, in each instance for 28 days, is recommended for patients without clinically evident neurological disease *****

****Following an episode of Lyme disease that is treated appropriately, some persons have a variety of subjective complaints (such as myalgia, arthralgia, or fatigue). Some of these patients have been classified as having “chronic Lyme disease” or “post-Lyme disease syndrome,” which are poorly defined entities.****

*****. Residual subjective symptoms that last weeks or months also may persist after other medical diseases (both infectious and non-infectious). It has also been recognized that the prevalence of fatigue and/or arthralgias in the general population is greater than 10%.*****

****To date, there are no convincing published data showing that repeated or prolonged courses of either oral or intravenous antimicrobial therapy are effective for such patients.*****

Then go to www.ilads.org and read that organizations Guidelines!

Also, go to:

http://www.myleftnutmeg.com/showDiary.do?diaryId=8493

An article debunking The Denialist (IDSA members)

****The controversy came to a head in November 2006 when the IDSA released new guidelines severely limiting treatment options for patients with persistent Lyme symptoms [3].

The guidelines were so restrictive that the Attorney General of Connecticut (USA) initiated an unprecedented investigation into possible antitrust violations by the IDSA, the dominant infectious disease society in the USA, in its formulation of the guidelines [13,101].

It's a long article, but this disease is SERIOUS and it's imperative that people understand the whys and whats of the huge disconnect between a group (IDSA) that's intent on limiting treatment for Lymies while they feverishly search for something 'patentable' to 'help' Lymies and the ILADS organization which, with all it's flaws at least depends on science and patient experience to treat us correctly.

Long term antibiotics are nothing to be afraid of, when treatment is followed by a top tier LLMD. Thousands and thousands of us have gained a good part of their life back while taking long term and aggressive antibiotics.

Tick borne diseases are what everyone should be afraid of!! THEY are the enemy! And they deserve serious treatment.

Cave is dead on here...

My LLMD's were ID docs, who changed specialty to deal with Lyme - as they and their children were infected.

I did 12 years straight of abx - and barely have any liver damage - which has fixed itself. A combo of abx alt treatments can be very effective - and for some - like me - there is no choice but a long term treatment plan. The "general" rules seem not to apply to Lymies in so many cases. The bacteria doesnt build up a resistance to the abx - but it does have ways of hiding and protecting itself...thus the need for different abx. ABX cocktails are used in order to fight the bacteria in its different forms and ultimately make it vunerable..and for some patients who have had this disease for several years undiagnosed and untreated, they need to plan for several years of treatment....

This disease infests and infects every place it can get to in our bodies. And if it takes years to do so, it compounds those areas. Long term treatment is a reality - dont let anyone tell you otherwise. Just because these docs have gotten their degrees - doesnt make them GOD...many wont take studies and research seriously, simply because it wasnt printed in "approved" journals and such. They find the most ridiculous reasons not to believe honest information...and that is pathetic. And they need to be reminded of that. Just because they didnt "hear" about it doesnt make the findings any less substantial.

Educate yourself as much as you can - and learn to point out the stupid. Like "Lyme doesnt exhist in (state)" when you hear crap like that, fire back..."Oh so the bacteria can actually discriminate? It recognizes state borders? How wonderfully intelligent!" The stupidity and foolishness of the garbage these docs buy into needs to be revealed. Ya know, like "hey if you dont want to sound so stupid, maybe you should read the facts."

OK - enough of my tangent, I am in a highly aggitated state today - so I will end here

Good Luck

Christine

they are right, long term abx really cause much less risk, than living with this disease. Most lyme docs check liver and kidney functions regularly anyhow, and if they spot a problem (which I have maybe heard of ONCE in the thousands of people Ive talked to, they change course.

PLEASE pm me, and we can find you a lyme doctor who has dedicated thier life to this