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!
What basis is this LLMD making that comment on? What test did he/she do on your friend to indicate there are no Borrelia present in his body? As far as I know there is no medical test that will specifically tell you whether or not you have Borrelia present in your body.
Borrelia LOVE to hide out deep within your tissues and they do come back and cause problems. If your friend's LLMD is not aware of this, that LLMD may be a "Camp A" follower.
One of our members, Tincup, wrote an excellent article on the controversy surrounding treatment of Lyme Disease called Camp A and Camp B - The LD Controversy. You may also want to print out a copy of it for your friend to read.
Your friend needs to seek a "Camp B" follower for a second opinion.
Linda
Is there any question of coinfection involvement here? If you have babesia and bartonella, the meds taken for lyme may have left them untouched.
In my case, we treated a long time for LD, but my symptoms never completely went away.
I tested positive for Bartonella at Medical Diagnostic Lab in NJ. www.mdlab.com
Bowen Lab in Florida found I still had Lyme, but I also had Babesiosis. www.bowen.org
I had had negative tests for Babs at a couple other labs. Maybe the strain in the South is a little different.
After treating for both co-infections, my symptoms cleared up.
I've been off abx for 2 yrs, but the Lyme is gradually coming back, so I need to start abx again.
Not too surprising because I've had Lyme since the late 1970s or early 1980s, no diagnosis until 1992.
Go to Seeking a Dr here on LymeNet & ask for a LLMD who is very knowledgeable about co-infections, too. Be sure to put Al's location in the title.
Didn't take long for it to drop back to the 3rd page.
Sounds like your friend needs a new doc. There are a bunch of good ones in NJ.
You've gotten good replies here.
Coinfections need to be diagnosed and treated before Lyme can be successfully treated.
Most LLMDs believe you need to be symptom free before stopping antibiotics.
You're a good friend for coming here for answers for Al.
Best of Luck,
Corgilla
He has no co-infections and has been tested by Igenenex and MDL and his LLMD is probably the best in NJ, but in my opinion it's ALWAYS good to ge more than one opinion.
I'll keep you posted. Be happy and well!