Lyme Testing
 

I don't recall how the first testing was done (in 1996). The second was test was ordered by a physician in a University setting who was considered to a fibromyalgia expert there in 2008. I believe I had the standard ELISA test which came back negative. According to the CDC site on Lyme testing if the ELISA comes back positive you would proceed onto IgG Western Blot testing or if it comes back negative and the clinician is still suspicious, then you could go on to some other type of testing. This was not done in my case.

ML, you may already know this, but the CDC criteria for Lyme Disease tests are for tracking – not diagnosing.

Any way, as more attention is allocated to identifying other bugs responsible for bacterial disease, more is learned every day. Did you see this report today on Ehrlichia (tick-borne infection) found in Minnesota and Wisconsin?

Researchers Find New Bacterium Causing Tick-Borne Illness Ehrlichiosis In Wis., Minn.

OK, nuff said. Back to you.

Lyme Testing & CT Scan results
 

Hi Harrison,
Thanks for the information. After thinking about things overnight, I think I will pursue the Lyme testing further as the ELISA is not necessarily all that specific. The challenge will be getting a physician to listen to me and in finding the correct tests to order. The IgG Western Blot is indicated for latent Lymes but your right there seems to be some controvery regarding the types of testing.

I did have a strange rash when I was in my early 20's that wasn't necessarily bull's eye, but it had a red ring around it. The MD then treated it as ringworm that I supposedly got from one of the cats and I did tell my other providers about this when the testing was done. The other disturbing thing is that right after I got that botox my legs and feet started to swell up. Clots were ruled out with both bilateral ultrasounds and a liver ultrasound. The cardiac echo showed some mitral insufficiency. I've been wondering if I didn't have some slight amount of vascular uptake with the botox, but now w/the consideration of possible Lyme, it's started to make me think differently.

The CT of the SI Joint shows it is very widened w/sclerotic changes. It's looking more and more that it will need to be fused. I will try to get more of a systemic work-up prior to that.

MeggieLynn

MeggiLynn,

I was tested for Lyme at least 5 times prior to the Naturopath finding it because I lived in the Mid-Atlantic region for 13 years and Lyme is very prevelant there.

The testing for Lyme really is clinical and the testing procedures are very unreliable. My clinical diagnosis was confirmed by traditional doctors with additional non standard testing only after the Naturopath ran tests that the medical doctors had not and would not run. Again, just pointing it out and it may not apply to you. There has just been such a correlation between bacterial infections, Lyme and biofilms in relation to spine issues in the last 2 - 3 years.

Bill

Hi Bill,

Do you remember what tests were used in your eventual diagnosis?

ML

MeggieLynn,

The CD57 test that the Naturpoath ordered end up being the deciding factor that Lyme was the culprit. I tested positive (positive for 5 bars) only once out of 10 western blot tests that I took. This was only after the Naturopath told me I had Lyme and then I had several tests done.I tested positive for at least 1 bar in all 10 tests. That tells you that the test is flawed and also that Lyme truly is a "clinical" evaluation.

Bill

Small Update on SI Joint
 

I saw Dr John Stark today, the SI Joint fusion surgeon, and the news wasn't good. He said I have true sacroiliitis with a large amount of bone missing on the ileum side. The gap looked pretty ugly on the CT - all along the entire joint. I asked if he thought it was an osteomyelitis (bone infection) - He said he didn't think so - that I would probably feel sicker with fevers. I don't know. I have felt more lousy than usual the last 6 months. He told me I need to take it easy while this is getting worked up - no more PT, stretching, or trying to walk. Next step is to see Rheumatologist and then possibly an Interventional Radiologist for a joint aspiration. If it comes to that, I'll push for a PCR test of that fluid to check if there's any Lyme bug DNA present. It'll need to be fused eventually.

MeggieLynn

Thank you for all the info this thread on Fibro & Lyme disease what type of doctor should I see to get these blood test done?