Returning to Forum, need help with test results

Hello all,
I was active in this forum about 5 years ago when I was first diagnosed with Lyme. (Everyone was very helpful and supportive!) I treated with abx and Buhner protocol for 2+ years and had a period of feeling better, only to return to a different LLMD in the summer of 2018. My lyme test was CDC positive and showed a large number of bands. I treated for another 2 years with the new LLMD with minocycline and Byron White protocol. I stopped treatment around April 2020 because it was difficult to get an appointment and, quite frankly, I was out of money.
Since then, I've been functioning at about 80-85% (which isn't terrible compared to how I felt in the past.) You know, some good days, some bad days, etc etc

Recently, I was sick over Thanksgiving with what the Urgent Care Dr said was a virus (not the C virus though.) I had about a week in December where I felt ok but then developed the C virus right before Christmas. The symptoms lasted about 2 weeks, but I haven't felt right since (a lot of fatigue, joint and muscle pain, brain fog, gastro issues.) I decided to return to my LLMD for a check up and need some help with test results: (testing was done through MDL in NJ)

Elisa C6 Peptide came back positive
Western Blot came back IGMAlt Equivocal** but only bands 41 and 66 were detectable, everything else was negative
In addition, all of my EBV IGG antibodies have doubled since 2020 (does this mean reactivation?)

I'm not sure what to make of the Lyme results. When I stopped treatment, we were starting to go after cyst form. Since there were only 2 bands detected this time around, does this mean Lyme was treated effectively or that it has now gone into cyst form completely? This is the first time in 5 years of testing that I did not test CDC positive. Or is this something only my LLMD can answer? lol

**In past posts, we discussed what IGGAlt and IGMAlt mean and could never come up with a clear answer. It turns out that "Alt" is the Alternative Criteria first used by Dr Richard Tilton rather than the CDC criteria! The Alt criteria does not require as many bands for a test to be considered positive for Lyme!

Thanks in advance for any help and advice!

unfortunately serological testing for lyme is fraught with difficulties

all we can really tell from your past and current results is that you have most likely been exposed to lyme at some point in the past.

once you have been exposed to lyme - you may continue to show antibodies especially IgG for years afterward regardless of how active you infection is - or even after it is gone ( we still do not know if its possible to completely eradicate the organism once infected )

on the other side of the coin - some people who are infected with lyme causing borrelia and have been confirmed as infected by other means ( eg culture ) never produce the expected antibodies. or only produce IgM not IgG or vise versa.

this is also why the bands and interpretation thing is such a mess.

given this state of affairs its hard to understand why some LLMD's continue to run serological tests on patients after initial diagnosis.
it seems to be a misunderstanding of the basic science available to all.

many other LLMD's base treatment on symptoms - use initial tests only as supportive to diagnosis - and continue to treat until after all symptoms have resolved - for the reasons above.

i am sorry you find yourself in this position

it sounds like your brush with one or other virus knocked you about enough to cause some kind of flare up.

i think if it were me i would go back to trying what helped most before and see how i got on with that approach.

Post Edited (Garzie) : 2/10/2022 10:45:04 AM (GMT-7)

the other possibility is some kind of long covid type thing - as the symptoms are similar
some LLMDs think this also might be reactivated lyme and co - others some kind of immune dysregulation

but i think in your shoes i would try the lyme treatment first - as the long covid is even more mysterious than lyme at present

Welcome back! Although I'm sure you rather not be back... Hope you feel better soon.