Honeydew, thank you for responding. The symptoms started back in June 2012 - fatigue, muscle and joint paint (mostly small joint on hands and feet), very strange joint "clicking", migrating pain for the first 3-4 days, flue like symptoms, vibration in feet (occasional). At the time I was tested by my PC's lab (Western Blot) and the only reactive band was IgM 23 KDA. Under my PC's recommendation, I started treatment with antibiotics (Clarithromycin 500mg/twice a day). Also, I decided to seek another opinion and as a result I saw an infectious disease specialist and he completely ruled out Lyme, so 3 weeks into the treatment and decided to stop the antibiotics. Three and a half months later, I do feel better but not 100%. Right now my PC is recommending another course (1 month) of antibiotics again, based on the Igenex results. I am not convinced I need them or perhaps I am not convinced I have Lyme on the first place. This has been very confusing and draining experience, as nobody has been able to give me certain answers.
I don't know, I think that if you didn't have it, there would be no positives on your test but there are several and you also have symptoms that seem to like Lyme. I do think you need treatment. You could also have co infections as well but most regular doctors wont test.
I tested positive for just one band, but had symptoms..started getting bell's palsy but just a slight case. thanks goodness I caught it in time! don't waste your time with an infectious disease specialist.
oh and the (+) is a weak positive but still positive and the more (++) that show up the stronger it is! and some of those bands are specific for lyme..right now I don't remember which ones.
Last edited by Honeydew72; 09-14-2012 at 08:40 PM.
Lyme is diagnosed primarily by symptoms. Many people with lyme test negative so I wouldn't put too much stock in this test. If you want a correct diagnosis you should see a lyme disease specialist, an LLMD. An infectious disease doc is not qualified to diagnose or treat lyme. Read the stickys at the top of this board - lyme newbies and two other information threads about testing and how to find an LLMD.
Hi, I'm new to this board, suffering with lyme almost 10 years, most likely misdiagnosed as fibromyalgia for 9 years.
Anyway, I wish I would have seen this article even a year ago, but it confirmed for me that I most likely had lyme all along, back in 2007, I only ever tested positive for band 58 I did not test pos on any other band. This article is from 2010.
I was always told band 58 is not specific to lyme but it IS specific. it's a heat shock protein to BB , how would it not be? and yet this is the only article I found that is the most reliable.
If one uses an expanded Western blot with revised requirement criteria for diagnosis, studies have demonstrated an improved sensitivity of detection and a low false-positive rate.
Revised Criteria with Western Blot
1. IGG WB: 2 specific band criteria has demonstrated improved sensitivity and maintained specificity
2. Can diagnose Lyme if any one band (IgG or IgM) of 18, 23, 28, 39 or 58 kDa or if any 2 or more of the following bands are present; 30, 45,41 and 93
3. If negative or require further confirmation, can obtain IGENEX WB (adds specific bands of 31, 34 an 83, which are typically seen in chronic disease)
4. Positive if any one band of 18, 23, 28,31,34, 39, 58 or 83
5. If positive for Borrelia on any test, consider testing for neurotoxins
6. Consider testing for co-infections (discussed below)
7. Check for coagulation defect (See Hypercoaguable State in CFS and FM)
Hi...I know it is so confusing, draining, and difficult when you different doctors are telling you different things. To put it simply, right!
IgeneX is great, but if the infection is hiding in your body, it may/may not show the full bands that are present in the body. I have *heard* that these bands can show up more once beginning treatment. Don't quote me there, and it's really expensive to keep re-testing so i wouldn't spend your money there.
I went to an Infectious Disease Doctor too--waste of money. He had worked at the Mayo Clinic here in MN previously before branching out to his own private practice. He ran all sorts of tests, said i didn't have lyme, and even when i had antibodies in my spinal column (yep he ordered a tap), he diagnosed me with CFS with "unusual neurological symptoms."
Never look back or listen to what IDSA-trained doctors tell you. In my opinion, their opinion is not worth my precious time!