You have more + and IND than I do and I have lyme disease. I only have + and IND for 41KDa on Igenex. I first fell seriously ill in 1997, then 1999. I do not recall any tick bite except for a dead( or dormant?) tick in my bed during that time.
Prior to dx of Lyme, MDs floats CFS, MS and such ailments as possible dx for me. Anyhow I improved on Rocephin IV and I am not done with lyme treatment.
By the way, my hypothyroidism went away and I do not need thyroid meds anymore.
Find LLMD, and it is not easy as it sounds. Others will elaborates on that.
Make sure you test for co-infections with IgenX. My hypothyroid is improving.
Sorry meant to send it to you.
Your tests have been done by IGeneX Labs in California, which is thought well of by Lyme specialists, so this is good.
However, Western blot tests are not perfect, and are just indicators. That said, anything that has Lyme-positive bands should not be ignored, no matter how few positive bands there are.
--- Igenex Western Blot IGM result -- Negative [IgM is the antibody your immune system makes shortly after an infection, and then it fades away]
CDC/NYS result Negative -->> this means that by the overly strict standards of the CDC (Centers for Disease Control in Atlanta) and the NYS New York State health department,
30kDa + -- unknown, probably a protein from the outer surface of the bacteria
39kDa IND -- this lights up ONLY when Lyme is present, and tho 'indeterminate', that is counted as a positive
41kDa ++ -- could be any spiral-shaped bacteria, so it could be Lyme
--- Igenex Western Blot IgG result -- Negative
[IgG is the antibody your system makes against Lyme bacteria later on in an infection, after the IgM fades)
CDC/NYS result -- Negative
34kDa IND -- altho this is 'indeterminate', it is usually counted as positive; band 34 lights up ONLY when Lyme is present
39kDa IND -- ditto
41kDa ++ -- could be Lyme, could be something else
--- Lyme IgG/IgM Serology 0.36 LIV
LIV = "Lyme Index Value", meaning the ratio of the IgG to the IgM test results:
Lyme Index Value.
Negative = Lyme Index Value is yours is here ***
Equivocal= Lyme Index Value is ≥ 0.8 & < 1.2
Positive = Lyme Index Value is ≥ 1.2
A non-Lyme specialist doctor might say these results are not positive enough to diagnose Lyme, but given how very long you have been ill, that you have such positive tests is, to my uneducated eye, significant.
Has your MD considered doing IGeneX PCR testing? It looks for Lyme bacteria DNA in your blood, instead of looking for your immune system reaction to Lyme (and the immune system stops making antibodies after a while, so the tests fade)
Like mojogal above, my thyroid went back to normal from hypothyroid once my Lyme infection was treated.
Co-infections are another issue ... your doc would have to know what to test for based on your other symptoms. Bartonella and babesia are two common co-infections.
As to ME/CFS, those may be simply misdiagnosed Lyme. Don't know, and often the docs don't know either -- they use 'chronic fatigue' as a description, not a diagnosis, since they don't know what causes it.
Let us know how you do, and what your doctor says! Best wishes to you -- thank you for sharing your results with us.
My PA told me that it is their sickest patients who test negative on a Western Blot. Lyme is immunosuppressive and over time, the bacteria move from the blood into the tissues. When the immune system doesn't see it in the blood anymore, antibody production drops. As antibody production drops, you get sicker, as your immune system isn't putting up much of a fight anymore.
If you have had Lyme for 20 years, there is a really good chance you would test negative. The fact that you show strong positives on the 41 band (the first, most common, and most persistent of the Lyme antibodies) and a slight reaction to two Lyme specific antibodies are indicators of Lyme Disease, even if they are not proof positive. I am not a doctor, but if I were you, I would start on antibiotics if a doctor were willing to give them to me. It might take you months to start feeling better as you've been sick for so long so don't give up too soon.
Your doctor may also want to do an antibiotic challenge, which is to put you on antibiotics that work against Lyme, and then retest you in a month or so, to see if the dead bacteria hitting the blood stream has rekindled your immune system.
Keep us posted!
Thank you all very much for your very helpful advice. I didn't know that the hypo-thyroidism could be reversed - that's very encouraging. I also had a viral panel done at the same time as the Western Blot which indicated I have ongoing EBV infection. Somebody suggested that could affect the band 41.
In light of your answers, can I please ask some more questions?
I'm in Scotland; any recommendations for a LLDoctor in the UK or Europe? I have had the BCA Clinic in Germany recommended to me. My current doctor does know about Lyme obviously as they ordered the Western Blot test, but I'm not sure if they are enough of a specialist in it. Following the Western Blot results above, they suggested I get an ELISA done to see what result it produced, but I don't think it was with antibiotics beforehand.
What antibiotics and dosage are given for the antibiotic challenge? And which test would you follow the antibiotic challenge with - the Western Blot again or another one?
How do you know what co-infections to test for? Does the doctor just decide that based on symptoms?
Many thanks again for your input. After 20 years of it, I would dearly like to get some improvement and want to make sure I do the right thing and not mess it up at this stage.