LymeNet Flash: Advice needed for my Lymie friend

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Posted by oliverbb on :

Hello all,

I am a recovered Lymie and you all helped me tremendously. My friend AL is a Lymie and has a dilemma and is too upset too ask for help so I'm stepping in for him.

He tested 8 bands positive on the WB and Spec Scan (moderate) 1 1/2 years ago. Diagnosed with Neuro-Lyme. He was very very sick. It took one year (getting sicker and sicker, all tests negative through Quest) until he went to a LLMD, I showed him the way..... He then went to a very good LLMD in NJ, was treated with 6 weeks of IV, 3 other meds, finally, Ketek for 3 1/2 months (400 mg, 1 a day). He has been feeeling much better, most Lyme symptoms gone. LLMD tested him again, most recently he tested negative on WB and PCR. LLMD took him off of meds, 6 weeks he's been off meds, has not been symptom free ever. Cloudiness has come back, burning in legs, slight headaches, lack of energy, are his symptoms now. LLMD does not think he has any Borrelia left in his system, and will not give any more ABX.

QUESTION: Are these post symptoms he will have to live with? Are these residual effects? Should he try another LLMD for a second opinion?

Thanks so much for any advice!

Posted by sunshine24 (Member # 6867) on :

to be taken off meds you need to be symptom free not having one thing. if he has his own regular doc tell him to call ignex and order a kit and have his doc sign it off. thats what i had to do when i started tests. he needs to be on meds and my doctor told me for every year you have lyme you need 2 years of therapy.

Posted by mjbucuk (Member # 843) on :

would this LLMD be either Dr F or Dr G by any chance?

Posted by oliverbb on :

I totally agree with being symptom free b4 you are taken off of the ABX. my LLMD was not the same as my friend Al's, but he got me better due to just that method. In fact, he said I should be on ABX for 2 months after my last symptom. It has been 5 months off meds and I feel 100% again

Al has had may tests from Igenex and MDL, tested neg. for all co-infections but 8 bands positive on WB.

Anyway, to answer mj, his LLMD is Dr G. Why?? Feel free to email me.