Lyme Disease Support Group

My son is 24. For 10+ years, he's had headaches and fatigue. In January, he said the headaches were worse. One day, he took his temp, and it was 101. The next day, we were in the doctor's office.

On 1/26, he was tested for Rickettsia, Lyme Western Blot, Ehrlichia Chaffeensis, Francisella Tularensis, and Mono.

Lyme - IgG 41 was reactive. IgM 23 and 41 were reactive.

E. Chaffeensis IgG 1:128 H. Interpretation was past infection.

He was give tetracycline 500 mg for 3 weeks. He still wasn't better and had on/off again temp in the 99 range.

Went back to doctor and repeated tests on 3/3. While waiting for test results, had brain MRI. Found a tornwaldt cyst. Went to ENT.

ENT said it wasn't tornwaldt cyst but more like scar tissue from when he had his adenoids removed when he was 4. A nasal spur was found. Said to try nasal spray but didn't help.

Got the results back on Wednesday.

RMSF IgM was detected 1:64 H. Could be false positive since IgG wasn't detected.

Lyme IgG 41 was reactive. IgM 41 was reactive.

E. Chaffeensis IgG 1:64 H. Interpretation was past infection.

He's on tetracycline 500 mg again. When finished, will wait 2 weeks and repeat tests.

The labs who did the results were Quest in CA for Rickettsia, Quest in KS for Lyme, and Focus in CA for E. Chaffeensis.

I would like to know how likely these results are accurate, especially the ones from Wednesday?

From what I've read, IGeneX is the lab of choice. I can't afford it and don't qualify for any help.

However, once I tested with a speciality lab, I had tons of bands on both sides and was dx with bartonella as well as BLO ontop of the lyme. I did 11 months of Rocephin, with a few months of zithromax (all by IV method). Currenly, I "believe" I am in remission.

He really needs a llmd and testing from a specialized lab.

RMSF IgG is now detected. Wasn't on the first test.

Lyme IgG only 41 has been reactive on both tests. I thought it had to be more than one band.

Lyme IgM 23 and 41 were reactive first test. Only 41 the second test.

My son's headaches are 24/7. On a scale from 1-10, they are either a 5 or 10. His fatigue is also 24/7.

Can anyone give me an approximate cost to have the tests done at IGeneX? I live in AR.

thx for the nicely detailed, short paragraphs for me wow, does he have alot going on there.

in my welcome letter, PRINT OFF SYMPTOMS LIST FOR LYME & CO-INFECTIONS, have him/you check off all things he has going on ok.

his PRIMARY dr. could diagnose him CLINICALLY for any of these things if he's been doctoring him while he's been going thru these things. LABS ARE NOT 100% ACCURATE; nothing is!!

please post in LLMD REQUEST FORUM showing your largest/closest cities and your state in subject line.

you could also copy the link for your post here to over there as well for reference for others wanting to know more.

if you are FROM CALIFORNIA, be sure to read christine's & MY POST SHOWING MY BREAKDOWN OF CALIF. SECTIONS, so we can send you the correct one since they are spread out and so many there ok.

leaving shortly; just wanted to get this quick note off to you ok.

RMSF...is nothing to fool around with; it's a DEADLY DISEASE IF NOT TREATED. don't mean to worry you; but that's the facts ok. hugs/kisses to a very carrying mom.

bettyg, iowa

Others may jump in here and give you more info, however, I would junk the labcorp/quest testing and go straight to Igenex or another speciality lab of choice. Simply call Igenex, order the lyme kit and within a week, you'll receive it. Then take it to any doctor you choose, have them draw it, ship it back and within 2 weeks you have results.

I can tell you approx on Igenex testing, but it may have changed since the last time I had blood sent there (fall 09)...

Blot IGM 195

Blot IGG 195

Basic lyme panel 260

PCR 230

Individual co-infection panel (non-pcr) 135/ea

Full co-infection panel 660

I'm pulling these numbers from memory...so give them a call, then can better tell you.

HOWEVER, I would encourage you to seek out a LLMD pretty soon. The longer you wait, the harder to get the headaches under control, esp since he's been having symptoms for so long. Stear clear of infectious disease doctors though.

fatigue and sore wrist joints.No treatment.

Fast forward March 3/10 immobile joints swelling,could not walk, shooting pains much much worse,

retested by Quest Just #41 band ??? Finally seen by LLMD and was immediately put on 400 azithromicin and 200 planaquile for four months.

Time for LLMD !!! regular Drs just dont get it.