Best testing lab for Lyme

[whitestavern]

DH is convinced he has Lyme. I'm not so sure, but I think he should rule it out. He did have a test ordered through his doc and it came back negative. So now he wants to send out a blood sample to another lab. I've always heard IGeneX is the best/most accurate, but since there are so many Lyme literate people on the board, I thought I'd check and see if they are indeed considered the best. Also, if anyone has already sent bloodwork to a lab, any advice would be welcome. TIA!

[StephanieZ]

Igenex is the lab that Lyme folks love. I was lucky to get a CDC positive through a traditional lab, so I have no personal experience. But, in a chronic Lyme situation with traditional labs showing negative (or in other more complex cases), Igenex seems to be the way to go. I think most insurances and most doctors won't order/use it . . . but I think any LLMD would pull the labs for him . . . I get the impression it's pretty darn expensive (several hundred dollars). Honestly, I'd go to a LLMD right off the bat, as he'll need a LLMD to treat him if he does get a positive, and also to help interpret the lab results. 

[Spryte]

He needs an LLMD.

 

Igenex is a great lab, but it's still complicated. A good LLMD will know how to order through igenex, when to take the blood (early in the week!) and how to interpret the results. It's not as simple as a positive or negative.

 

And Lyme is still a clinical diagnosis. There's no test to rule it out. One can have it and never test positive. I'm a prime example of that. I never had a CDC positive, only ever showed a few bands that are Lyme specific, and had many non LL docs say, "nope, not Lyme." But... i had a positive PCR. Yup. That's rare. Even for someone with a CDC positive - lots of false negatives. But a positive is ... positive. And I had gobs of co-infections. I just don't make antibodies to Lyme.

 

Why does he think he has Lyme?

[whitestavern]

Hi guys and thanks for your responses. I guess we will have to find a LLMD. I only know of one in the state (surprisingly as it's CT) but he is far and I've been told only accepts patients who have a Lyme diagnosis, which makes no sense to me. There are a few websites where you can get a referral by putting in your contact information. Is there a best site for this?

 

His symptoms (for quite some time) are achy joints and stiffness, primarily hands/wrists/hips; brain fog/forgetfulness; tingling in upper neck and shoulder blade; sleep issues (staying asleep and/or waking early--he goes to sleep fine); irritability. He has a slightly elevated RA factor, like 2 points over normal.

 

He's 51 and works in an office. I think part of his achy joints could be based on him sitting a lot. Weekends he does a ton of work around the house, which could also cause those symptoms. Many people I know complain of forgetfulness or brain fog or poor sleep. His job is stressful and our ds is fairly challenging, so that could explain the irritability. I'm not sure those symptoms can be attributed to Lyme. We do live in tick central and he is outside a lot, so I don't doubt he could've been bitten, though we are pretty good about daily checks. Our healthcare plan stinks so we have to pay pretty much everything oop until our deductible is met. With vague symptoms it's time consuming and costly to keep going to docs and getting testing done. He hoped that by doing the IGeneX test it would rule Lyme out, as best as possible, so he could move on. Any advice?

[Lizzie in Ma]

Well, you could start by having his primary sign off on an Igenex test and go from there.  In the meantime, Stephen Buhner's approach to treatment is mostly immune support, so you could start that for him before paying out of pocket for an LLMD. We went to Dr. Bernard Raxlen in NYC.  Wouldn't be too bad from Connecticut I wouldn't think.  We actually drove to New Haven and then took the train into Grand Central.