who diagnosed you and with which test?

was it a general physician or LLMD.. I mean when you went to LLMD were you already diagnosed or he did that for you ? how many doctors you saw till you got diagnosed, and for how many years till they diagnosed you ?

if not a LLMD, which doctor specialty you feel is more knowledgeable about Lyme other than LLMD ?

which tests, blood work other than Igenex can give an insight on the presence of Lyme ?

I heard that lumbar puncture can sometimes be used to detect lyme in the spinal fluid.. is this accurate ?

also, which is better LLMD, LLND or integrative doctor, functional medicine to start with ?

I basically diagnosed myself. My mom insisted an ER doc test for Lyme. It was negative, but band 23 was present. I ordered the igenex kit and got my primary doc to sign it. Then I called an LLMD.

My LLMD, and confirmed with Igenex testing

Hi abenewhere,
Using a lumber puncture to diagnose Lyme is extremely inaccurate: the odds of seeing the Lyme spirochetes are extremely low. The test itself poses its own risks. It can rule out other causes of neurological problems, however.

I tested positive on the Western blot test but only after being reinfected and adding co-infections. My doctor's Physician's Assistant ordered the test but was very surprised when it came back positive.
My LLMD did the Igenix testing and I came back positive for Ehrlichia. I never tested positive for Babesia but had the symptoms and have been being treated for it.

I'd say start with an LLMD, and then seek alternatives if that doesn't work for you. Many doctors want to order particular tests, so you might as well let them choose. On the other hand, if you have doubts that you have Lyme at all, then try to get testing before going to an LLMD so you don't have to pay for their fee.

There is other testing, some which seemed quite promising, but none of them has proved really definitive and they all seem quite expensive.

I went to a doctor of functional medicine (who also, as luck would have it, was an LLMD), seeking help for my thyroid. He ran a whole slew of tests. I had a western blot that was negative on all bands. My doctor explained that this test had a high rate of false negatives, so he didn't pay much attention to the negative results. He also ran a CD57, which was extremely low. So he made my diagnosis based on my symptoms combined with the low CD57. My reaction to the treatment confirms that it is lyme.

I'd had strange problems develop almost over night with thyroid and GI. That was 15 yrs ago and they got worse and worse and no doctors or NDs really understood what was going on, nor was I really in a reliable maintenance plan with any of them. I spent 10 yrs in the NE (living in NYC but traveled weekly throughout New England and NO DOCTOR or ND EVER suggested to test for lyme. Criminal.

I persevered, assuming that this was how I was to live my life as systems continued to break down slowly. I was in an insanely stressful profession, so this helped things break down more quickly.

Then, throughout 2013 I had had chronic sinusitis and bronchitis for 13 mos. straight. In/out of doc's office, ER, Urgent Care… took 8-9 rounds of various abx and steroids. I'd get a little better for a couple days then I'd be sicker than I was before. Soon, I started developing painful joints, muscles, unbelievably painful cramping throughout torso and stomach, projectile vomiting, sore feet… started doing my own research because I KNEW something wasn't right. Diagnosed myself with lyme and found an LLMD.

It was a year ago last week that I made my 1st LLMD appt—took me 5 mos. to get in to see her and had to cancel my appt because I had a migraine that day. She tested w/ ELISA, which was negative for lyme as was Babesia test. She put me on Olive Leaf Extract to "provoke" the infection and retested for lyme with IGeneX, which came up CDC positive. Had to treat GI and multiple viral overload and started herbs for lyme, Babs, Bart a few months ago. Was supposed to start Rocephin IV today but moved to next week to coordinate nurse care.

The basic answer to your questions—which kind of doctor is better—is relative. But I think the lessons most of us have learned here is that we absolutely have to be our own health advocate—whatever it takes. I don't mind being a responsible individual but this is wrong—I already had a full-time profession, and now I know more about lyme & co. than 90% of medical professionals out there.

I was at LLMD's office today and picked up a couple pamphlets on a new test—going to post another thread about it to query any experience with it.

Good thread!

-p