New or Old Infection?

LymieLady said...
Hi All, I have had Lyme issues since 2007. Pretty sure I got Lyme in upstate, NY where we got a vacation place in 2004. I have had three bites that I know about up there, followed by Lyme, and in between had Lyme return several times (even in winter) without any bites. Also had Babesia two years back and was treated.
My latest dilemma is that I have not yet been upstate this year and only got bit by mosquitoes and/or flies and feeling super fatigued with some pain. Went for a blood test last week for Lyme with Western Blot and the IgM band of 41 and 58 came out positive and band 23 as undetermined. My doctor was stunned and thinks I went into a kind of remission and now it's activated again. He wants to try injections for seven days or Doxycycline for 20 days. But I want to go for another blood test to be sure this is not a false-positve before I ingest all of this medication. I have taken so much antibiotics over the years I am starting to think they do not really work in the long term for all cases. My symptoms are rib pain, pains in fingers and mild pain in both knees and also shoulders and intense tiredness. I sometimes get night sweats. So something is going on and maybe I do have a reactivation of it but want to be sure. Any thoughts? Thanks.

Hi LymieLady, welcome!

It's difficult to know if you have relapsed or it's a new infection. Testing isn't reliable because even after treatment, our immune system can still produce antibodies - which show up on the Western blot.

I'm not sure it matters....as you have symptoms...which means you need treatment. (whether it's a relapse or a new infection - you need treatment)

We do encourage all new members read through the information contained in the thread: "New to Lyme?..Start Here!" Even though you are not 'new' to lyme....there is a lot of good information there.

If your doctor was "stunned," then I'm guessing this is not an LLMD affiliated with ILADS. That's the kind of doctor you need.

Remissions and relapses are defintely possible, if not common. So are under-treated infections, including multiple coinfections.

I'm of the understanding that there are no false positives on the Western blot, only false negatives. To my knowledge, there is no way to accurately determine past vs current infections through any of the current testing methods.

I agree with Girlie about the PCR. A symptomatic person with a positive DNA test for borrelia has an active Lyme infection. Still doesn't tell you if it is the same initial infection relapsing or a new acute infection though. Without a new tick bite, I would assume it's a relapse of the initial infection. That's just my opinion.

Thanks to everyone who responded. I cannot afford a LLMD because the one I was going to go to charges $800 for the consultation and nearly $400 per visit after, out-of-pocket, as well as paying for any meds out-of-pocket. I feel it is unfair to charge such high fees since that weeds out lots of people suffering who cannot find proper treatment.
I know of a couple people who have gone to the LLMD and they are still sick even after long term antibiotics. They are able to function better but are not well. One of them had to stop going after a year or so, due to the cost.
I went for a second blood test today just to compare to the one of last week, even though I do realize it is not fully accurate and no way of knowing if it is an older infection or new one. I doubt it is new since I live in a city and did not get bit by a tick. It's when I go upstate to the country that I have gotten bit and afterwards got sick. I did not yet go this year and am going in October.
My symptoms are tiredness, aching tops of shoulders, depression, getting cold easily, low body temperature when I take it thinking I have a fever. Under 98.6. Burning sensation along my back where I once had shingles over 20 years ago and bad rib pain (which can be from previous fractures, although I have heard that rib area pain can be from Lyme also.) Today I told my dermatologist I got a Lyme diagnosis once again and he feels I was not treated long enough as seems the general consensus. But I have been on antibiotics so many times for a month or so each time and I am looking into Dr. Rawls' Lyme book with alternative herbal treatment. My husband has Lyme and is doing blood electrification and magnetic therapy to kill the bacteria. It is a three month protocol.
Will have to think and pray about the treatment for this new bout. Thanks for all the input.