Hi all, I'm here to share my story and to hopefully get some of your inputs.
For over 15 years I've been sick. I've seen my GP for various complaints over the years and I'm sure he thinks I'm hypochondriacal. My symptoms:
severe, intermittent fatigue
itching, burning rash behind ears and on earlobes
twitching eyelids and inner ear
numbness and tingling in hands and feet
intense, burning, shooting pains in fingers, toes, and wrists
ringing in ears
extreme sensitivity to noise (especially jingling keys)
swollen, red fingers
weird taste in mouth
anxiety (ya think?)
In 2007, after researching the possible cause of my symptoms, I decided to get tested for Lyme, by Igenex. My IFA was positive, and my IgM western blot was positive for the 18, 30, 31, 34, 41, 45, 58, and 66 kDa bands, and indeterminate at the 39 kDa and 83-93 bands. However, my IgG was negative, except for an IND 41 kDa band.
I took my test results to a local infectious disease doc, and he told me that since I have been sick for years but had no IgG response, I couldn't have Lyme, since late Lyme always presents with a strong IgG response. He ordered another Lyme test (two-tiered performed by Mayo labs) which came back negative on the ELISA, so of course western blots were not performed.
After this I thought the ID doc must be right, I don't have an IgG response, I don't have late Lyme. I believed this out of desperation, telling myself just to eat better and take some vitamins. Guess what? That didn't work.
With no improvement in my symptoms, I re-tested this year, and the IgM is positive at the 18, 30, 31, 34, 41, 58, and 83-93 kDa bands, and IND again at 39 kDa, a nearly identical overall response compared to 2007 results. My IgG WB is still week with only a pos. at 41 kDa and an IND at 39 kDa, still not enough to convince any IDSA-affiliated doc that I have late Lyme. I also tested positive on the IgM 31 kDa confirmation test (a test with a 97% specificity), but negative by PCR.
I haven't been back to a doctor, mainly because there are no Lyme literate docs in my area (Charleston, WV). If any of you know of any good docs in states neighboring WV who test for coinfections and treat late Lyme aggressively, please let me know!!!
Re: my 15-year roller coaster ride, and which doc?
Your symptoms sounds exactly what I have been having more then 15 years, and I just tested positive for Babesia, yet for the West Coast strain, Babesia Ducani.
You may have the East Coast strain, yet if you have traveled around or moved from Coast to Coast, Country to Country, you need a comprehensive Babesia strain test, since there's so many of them. You can speak to a doctor at Igenex who can advise you on what co-infection tests to order.
Find a doctor who specializes in Vector-borne diseases, an ID doctor who has treated Malaria patients. Babesia is known as the Malaria of the East Coast, yet its rapidly spreading everywhere.
Get tested for the other co-infections such as Bartonella, etc.
I tested negative for two Lyme tests, one from Igenex and one from the the government lab, yet I too had the band 41 positive, meaning that there's an active infection in your system.