LymeNet Flash: Do I still have lyme disease?

This is topic Do I still have lyme disease? in forum Medical Questions at LymeNet Flash.

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Posted by bebfire (Member # 18096) on :

I have had lyme symptoms for a long time, maybe started in 1992?

I was told I had everything from fybromyalgia, agressive form of arthritis to depression. I have seen so many doctors and fought with them about fybromyalgia! No one believed in Fibromyalgia back then. Now they all contribute my problems to it!

Last year in August of 2007 I got a positive IgM western blot.

My primary doc put me on 200mg/day doxy course for 2 months. I was actually feeling better and then she said that was that...I should be rid of it.

By March of 2008 I asked my doc to do another test so she did and it was negative.

The symptoms kept going on...achy, tired, a very aggressive form of arthrits that was not RA, wierd brain fog and speech problems including mixed up sentences

I say words that I didn't mean to say like "I want to watch the river" instead of "watch the weather", heart palpitations, anxiety attacks, feeling like I was coming down with the flu and then the next day feeling better...

While on the doxy I felt better but then got worse again almost immediately after it stopped

Since then, I go from feeling terrible for a couple of months (joint pain, chest pain and palpitations, high b.p., headaches, night sweats, low grade fevers, brain problems and fatigue) to feeling pretty good but always joint pain.

August 2008 my rhuemetologist gave me another lyme test...it came back negative.

I just couldn't beleive the results so I send my blood to Igenex.

my tests came back positive three weeks later after the previous commercial negative lab test.

I was so sure that my doc would treat me but she said "I don't know how to treat you" and sent me to an Infectious Disease doc who basically told me that since I was treated last year I shouldn't have to be treated again and my body should have enough antigens built up to fight it and rid itself of what ever is left of the lyme....

I bought the movie "Under Our Skin" scarey, huh?

Now I am talking to an "ND", not an MD. She knows alot about lyme and worked closly with one of the doctors at igenex as well as other big lyme docs.

Here are my 2007 Quest lab lyme tests:
IGG 41 reactive
IGM 23 & 41 reactive

Here are my 2008 Igenex tests:
IGG 31&34 IND 41++
IGM 23-25+++ 31+ 34&39 IND 41++

I also tested positive at quest for microplasma pneumoniae...what the heck is that and what does it have to do with lyme?

My doctor seemed like she was game for it at first until the ID doc got ahold of her....now she won't even discuss treatment with me... Why?
Do I still have it or what?

[ 13. November 2008, 07:46 PM: Message edited by: bebfire ]

Posted by disturbedme (Member # 12346) on :

Yes, you most likely still have it.

Mycoplasma pneumonia can be a co-infection of lyme disease. There are many other co-infections as well that you should be tested for.

Please find a lyme literate doctor. Other doctors do not take this disease as seriously as they should.

Posted by adamm (Member # 11910) on :

It's incurable, so if you have the symptoms of it, you should treat.

Information on persistence mechanisms:
lymecryme.org
lymeinfo.net

Posted by bettyg (Member # 6147) on :

yes, i feel you still have lyme....

nice informative post for us all! [group hug]

Posted by bebfire (Member # 18096) on :

It's incurable???? I thought we could get rid of it? AGGGGGGGGGGHHHHH! Maybe I don't even have it? I mean, are the tests conclusive?

Posted by gemofnj (Member # 15551) on :

Bebfire,

It takes a long time to treat lyme. The longer you have it the harder it is to treat. Some people have been on meds 2 years or longer if they have 'chronic lyme.'

I have been in treatment myself for almost 7 months and I discovered it 6-8 months after I contracted it.

You can have more than one coinfection in addition to lyme.

The best thing you can do for yourself is get a good LLMD fast and start treatment.

Here is a copy of Dr. Burrascano's guidelines and some other good information about lyme and treatment.

You can go to the front of this board and post on SEEKING A DOCTOR and someone may even give you the name of a GOOD LLMD in your area they are using.

http://www.ilads.org/files/burrascano_0905.pdf
http://www.lymepa.org/SORTING_OUT_CO-INFECTIONS.pdf
http://www.lymepa.org/Nutritional_Supplements.pdf

It seems that you were just not treated long enough. Most LLMD's agree that you treatment is finished 2 months AFTER you are symptom FREE.

PS. Last month I said to my husband "I just got on the 'squirrel'" instead of SCALE! So I can totally relate.

Good luck and keep us posted.

Posted by hcconn22 (Member # 5263) on :

tests for lyme disease are not accurate. Lyme is a CLINICAL DX supported by lab tests.

2 months of doxy would not cure lyme. It comes back if not treated long enough and with the right combination of abx.

Your symptoms are the best indicator of an active infection--- especially neuro symptoms, which are my primary problem.

If your sick please find a lyme literate medical dr and get properly checked out. This stuff is nasty.