Yes, I was told to give it 2 years and Keep looking for co-infections since babesia doesn't show up sometimes for years.
Yes that is similar to what someone else told me just today..
Its's just so hard to believe that it could be lyme even after testing positive.
The neuro who told me it must be ms has really put the wind up me, and its so hard to stop worrying about it, even though it was 5 years ago, and with my daughter having identical symptons it has certainly been an emotional and very frustrating time.
I will stick to my meds and let you all know what my daughters results bring.
Thanks for all your help!!!
Melissa
I doubt you would have THAT many bands showing positive if you were just cross reacting to a virus.
Lyme suppresses the immune system, allowing viruses that were held in place by the immune system to flare back up again. Some people with Lyme test positive for EBV because of this. However, I had a very bad case of EBV 12 years ago, and I tested negative for it even when I was very sick with Lyme.
There are experienced LLMDs here in the States who will diagnose and treat just on the 18 or 83/93 bands combined with symptoms and history consistent with Lyme. Four lots of orals might not have been enough to cure your Lyme. I know everyone is different, but I was infected in Queensland, and I have been on abx for 6 months and I am still not well. My very experienced ILADS LLMD estimated it would take me 15 months or more to get well.
I never felt worse on the meds than I did before the meds -- just slow but steady progress out of the Lyme swamp.
From what I understand not everyone herxes the same way. The first time I did, it was horrific, not as bad now.
Hi
Was and am unsure, but thanks for posting back.
The reason I'm wondering about a false positive is due to having EBV when I was about 17 years old, it was also confirmed with a blood test.
On my test results from IGENEX it says -
Igm WB is considered positive if 2 or more of the double starred bands are present.
The only 2 double starred bands I got a positive on was 34 and 41 and both only had 1 + sign on them
Then it says positive result for 31 or 34kDa may be present after lyme vaccination in uninfected persons, or infection with HSV, EBV, HCV or syphillis and may give false positives.
As I have had EBV in the past, and a few weeks and just before getting my bloods taken for igenex I was really crook with an ongoing flu.
So if band 31 and 34 can come up as a false positive due to having EBV and if this is the case in my test, then it only leaves me with double starred 41 which would of made my result with igenex also negative.
Will have to ask my Dr about this.
I was on 4 lots or orals last year and never herxed, then different meds now, and I still haven't herxed again, so am just getting a bit doubtful that lyme is what I do have....
Any advice very appreciated
Thanks
I don't know what you have been reading, but bands 31 and 34 are so Lyme specific that they were used for a (failed) vaccine. Bands 18 and 83/93 are also very Lyme specific. Lyme Literate doctors will generally diagnose with Lyme if there is a single Lyme specific antibody and symptoms consistent with Lyme. Band 41 is the first and most common antibody to show up with Lyme, but it isn't Lyme specific. It is for the flagellum, and can show up with syphilis, leptospirosis, and a few other bacteria, especially spirochetes.
There is a good explanation of the bands on drjoneskids.com. He is a pediatrician who has treated 10,000 kids with Lyme and has seen it all. Click on Lab Tests and then Tests Explained. You can also google "Tom Grier Lyme." He has some good articles on Lyme testing. He is a scientist who had it for about 13 years.
I suspect someone told you that bands 18, 58, 66, and 83/93 were "not related to Lyme" because they are not a part of the CDC surveillance criteria. The CDC developed its criteria to track a narrow band of cases for epidemiological purposes. It was for monitoring purposes, not diagnostic purposes. They weren't trying to catch all cases. I do not know it came to become a diagnostic absolute.
I will just be blunt. Anyone who says these bands are unrelated to Lyme doesn't know what they are talking about. For all the criticism of Lyme advocates being "anti-science," I am amazed at how many mainstream opinions out there that are in reality, anti-science. There is plenty of scientific evidence out there about which bands are related to Lyme, which ones can cross react with other things, and which ones are not fully understood.
You have more evidence of a Lyme infection that I did (although I had a whole lotta symptoms).