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.
The forum leader on the SURVIVING NEUROLOGICAL LIMBOLAND user forum has been to the Breakspear Clinic in England. You might post a message on that forum to get more information about LLMDs in the UK. (Click on Forums, and then scroll all the way to the bottom to see the user run forums.). You can also Google "Breakspear Lyme" to find this particular clinic.
You might find more Europe specific information on lymeneteurope.org.
Regarding testing positive for EBV, many Lyme patients do, along with a handful of other viruses, mostly in the Herpes family. Lyme is immunosuppressive, and over time, virus loads previously held in check by the immune system increase.
Usually this results in the patient feeling even worse, as the patient is essentially suffering from Lyme and EBV/Mono/Glandular Fever at the same time. Either one can make you miserable all by itself. Some Lyme patients are incorrectly diagnosed with EBV and told there is not treatment. My eary Lyme symptoms felt just like a bad case of Mono.
You're very welcome --
I don't think I mentioned that my thyroid function also came back on line after I was treated for Lyme -- I found myself not sleeping well and then one night sitting up literally all night long because I couldn't go to sleep -- I had a big meeting the next day, and I cringe at thinking how incoherent I must have been! I finally realized it was the thyroid supplements and gradually took myself off of them. That was about 3 (?) years ago, and still fine without the supps.
I'm not sure about the EBV aspect -- I think Ricobord has some knowledge on this point?
I just searched on google for
lyme disease scotland
and got many interesting 'hits' -- but of course some of them will be the 'official' positions denying that Lyme is anything to be concerned about, tho a quick glance indicates there are many on the 'Yes, there is Lyme here' side, with some indicators of possible sources of finding a wise MD.
"Lyme disease" UK
may give some useful links. You could also try it without the "quotes", but I have found in the past that there are lots and lots of links to Lyme Regis. :) I just try different things to see what I get in return.
On the right side of this page in the skinny column there is a series of boxes ... the second one down (at least on my screen) is a small box saying "search this community", and if you type in Scotland or UK, it will fetch up any past posts that include those words -- that might get you some ideas, or you might be able to send a private message to those posters, since I don't think we've had anyone from there post here for a while.
You could also search for BCA, since I think someone has mentioned them in the past here. (That is the borellia center in Augsburg, yes?) I also just searched on google for
and got lots of interesting links, but don't think anyone who has been there is currently posting here, tho they may be monitoring quietly. Another reason to search the old messages for 'augsburg'.
You remark: "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." That's all right, my LLMD didn't give me antibiotics before testing, and I was quite positive, considering how long I had been ill. Everyone is different, tho, and a Lyme specialist could best advise you based on your own history. What antibiotics are used is also something the LLMD would determine. There are few things about Lyme diagnosis and treatment that are 'standardized.' You could look on ILADS [dot] org for Burrascano's treatment guidelines --- they ramble a good bit, but you can search them and the whole website for that matter for something like "antibiotic challenge" and see what pops up.
Yes, I think the W.blot/ELISA tests are sometimes done after an abx challenge, but perhaps more useful would be a PCR test done by IGeneX, which looks not for your immune system reaction to Lyme, but for direct evidence of Lyme bacteria DNA in your blood. The IGeneX website has information on the test, I think.
You ask, "How do you know what co-infections to test for? Does the doctor just decide that based on symptoms?" All good questions. Yes, it takes an experienced MD to know what test for.
Good for you for pursuing this, even (or especially!) after so many years. Please let us know how things go -- best wishes!
I tested negative on western blot but I was really sick at the time. My thyroid meds are less but started going down as well as other bad blood test results, after treatment and it will go to normal one day.
It's important to test for co- infections by an LLMD at IgenX because for many people that affects them more although the lines are blurred on which symptom is Lyme and which is the co-infection. I was treated with doxy for Lyme until my co-infection came back positive for Bart's and then we started treating the Bart's. I went from blindness episodes, not walking without a cane at all, muscle weakness to much improved with treatment. No more blindness, although I sometimes have problems reading, no more muscle weakness where I can't open the fridge....etc. it's not a fast cure but it does get better and eventually cured.
About testing: my LLMD (well-known in the field) used IGeneX for Lyme PCR testing (a different kind of test, and more accurate, than Western blot/ELISA), but used other labs for other possible infections, including LabCorp and Quest, as I recall.
The reason IGeneX gets a lot of mention is that they have a unique test for Lyme which nonLLMDs don't think is necessary, since they continue to rely on Wblot/ELISA.
Many thanks again for your time in replying and for all the info. So, my next step should be a PCR from Igenex? And / or the ELISA? (Reading the Igenex website, I can see why my doctor would say do the ELISA next, as Igenex seem to put quite an emphasis on it). Would I have to do the antibiotic challenge for either of them? Would that be enough at this stage or should I test for co-infections at the same time?
This is the tests they do at BCA clinic at Augsburg:
I've tried to compare it with the Igenex website, but am not sure if their PCR is the same; BCA seem to do it for the co-infections.
Can the EBV be treated? I thought there wasn't really any treatment for it. Or will it improve itself if the Lyme is tackled? Sorry for all the questions.
It's actually Breakspear that have done my first test for me at Igenex and suggested the ELISA. But somebody recommended the BCA to me as Lyme specialists and I was quite impressed with their website. I wonder if they might be a better bet for treatment.
All good questions you pose. These are fine differentiations beyond my knowledge, but others here may have some comments.
(Rico? Psst, Rico? Paging Ricobord.)
There is a point past which a website isn't the best source of advice, tho.