I was recently diagnosed with Lyme and started treatment, but want to ask some of the more knowledgeable people here some questions.
First, past history:
10 years ago, iffy Western Blot. Several bands present, but not Lyme specific, nor enough to be CDC positive. For some reason my doctor made a big deal that no IGM bands were positive. Retested (Elisa?) and was told I didn't have lyme, so no treatment given.
Symptoms: fatique, weird muscle twitches (primarily at night). Bloodwork at the time showed elevated liver enzymes and anemia. Both resolved.
5 years ago, diagnosed with idiopathic cardiomyopathy. Started treatment, heart function now low-normal. No cause found, suspected viral or genetic.
5 years ago - today. Periods of shortness of breath, fatigue, muscle twitches, myoclonic jerks, stomach pain (mostly right side), groin pain, lower leg pain, neuropathy, neck pain + crackling, jaw pain, costcochondritis, occasional throat hoarseness, dizziness.
Test results: positive exposure to ehrlicia, spotted fever and typhus. IGMs are normal, but IGGs reflect exposure in the past.
My Igenex results just came back, IGM positive (Igenex, but not CDC): bands 31+, 39 Ind, 41+. My IGG results were the same bands, but 31, 39 were IND, and 41 +.
Questions: Due to 31 being influenced by viral infections, how accurate is my Igenex positive result?
Is it safe to say basically all of my symptoms are due to Lyme? Including my heart issues?
I tested negative for babesia and bartonella, but could any of my symptoms be due to either of those? The shortness of breath thing is bothersome, and to confuse matters I do have asthma. But up until 5 years ago it never bothered me and was restricted to occasional exercise-induced asthma. Now my breathing bothers me quite often. Could that be Lyme related, or perhaps babesia? My doctor mentioned babesia as a possibilty, but seems sorta wishy-washy there. I never had drenching night sweats, but I had a weird period about 6 years ago of being oddly sweaty a lot during the day. That lasted several months, and then my daytime sweating resolved.
Any help appreciated. Thanks.
Posted by duke77 (Member # 5051) on :
If band 31 and 39 are positive it is Lyme. Band 31 is still one of the most definitive bands for Lyme. There is a crossreact test you can take if band 31 was positive. I don't think you need it with band 39 ind.
Posted by Lemon-Lyme (Member # 19229) on :
There seems to be some differing opinion amongst doctors if INDs are significant. If my 39 band was positive, that's be more definitive. I don't know if an IND is entirely significant.
And my results did come back positive for Lyme, but 31 and 41 were my bands. The crossreact test isn't currently available in my state, so I can't take it. But I did have some viral testing before my Igenex (EBV anyway) and wasn't IGM positive for EBV. So... I suppose the odds strongly favor a positive Lyme there, just not sure how strong those odds are or what other virals could influence band 31.
Posted by Geneal (Member # 10375) on :
Co-infection testing isn't that accurate either.
So a negative test means not a whole lot.
Better to get an appt with a LLMD and let them diagnose you.
My babesia test comes back negative. Yet, here I still sit with babesia.
There are 13+ strains of babesia. Igenex only tests for 2.
Just a heads up as a lot of your symptoms seem like co-infections as well.
Hugs,
Geneal
Posted by Lemon-Lyme (Member # 19229) on :
Thanks for the replies.
I am being treated by an ILADS doctor already. And regardless of what the IGenex results were, he said he was going to treat me for Lyme. Although a positive IGM did give further evidence for treating too. I was just curious as to the test's specificity when band 31 was the primary band on a positive test. Sort of moot, in a way, as it won't impact treatment... guess I just wanted to know my odds.
And I know that babesia testing is... how should I say this... sort of useless? Testing for 2 out of 13+ strains is an insanely bad test.
But my doc doesn't seem to know if I have babesia. Maybe he is just waiting to see if antibiotics help my current symptoms, and if not, plans to reconsider babesia as a diagnosis too. Also, curious if my symptoms matched babesia or not? The shortness of breath thing matches, but that theoretically may not be from babesia.