Looking for opinions ... my story

Hey everyone
I am posting because I wanted everyone’s opinion on what’s going on with me

December 2017 I started feeling sick I kind of woke up one morning and was nauseous , no appetite , malaise , burning in my stomach , just feeling really sick also with low grade fevers
Went to my GI doctor twice who told me it was a stomach bug
Since then I haven’t really felt better
In January I got really sick with an upper respiratory infection which felt like the flu I also had migraines
My PCP recommended I take the Lyme test and the ELISA came back 0.96 which is equivocal and I tested positive for the IGG 41 antibody only ... he suggested I take the 30 day doxy as he interpreted my test as borderline positive
He referred me to an ID doctor ... when I went to the ID doctor he said I definitely didn’t have it ( surprise) and I shouldn’t of been on the doxy in the first place

I went to a LLMD and he sent out my bloodwork to Igenix ... that came back inconclusive because I tested positive for band 41 and 31
He said he still considers that a positive and believes in addition to Lyme I have Candida and Bartonella

My ANA was negative , RA negative , I do have the MTHFR gene mutation , my CRP was good
He has me still on doxycycline 100mg twice a day with diflucan he said we can’t be too aggressive because of my gene mutation so I am also taking glutathiaone and the alkaseltzer gold

Currently I am still not feeling well , not terrible but just taking it day by day
What’s concerning me is I have flushing , rashes , feeling like my skin is burning , sometimes my throat is tight ... I went to an allergist and she is working me up for mast cell... the histamine in my urine was slightly elevated so I don’t know what’s going on with that she has me taking xycal everyday over the counter until we do more tests ... I also added quercetin because I read it could help but I am still not feeling good . I also started a low histamine diet

I am at a loss and wanted everyone’s reviews ... I think it’s bothering me I didn’t get a positive igenix test
Could this be anything else or just mast cell activation disorder on its own ?

Currently symptoms : nausea , itching , flushing , back pain , blurred vision , muscle twitches , low grade fevers , throat tight at times , my ankles hurt , some days very fatigued burning in hands and feet , severe anxiety

Thank you everyone

I experienced about half of the symptoms on your list. I would be inclined to trust your LLMD. I was skeptical too, as my tests were both interpreted "negative". I have been lucky to have a good recovery so far.

I will also tell you Doxycyline was not that great for me. It was not totally able to keep symptoms at bay. Zithromax did nothing at all for me. Minocycline, Ceftin, Flagyl and Clindamycin were all very effective at knocking back my symptoms fairly quickly.

It angers me that many studies I read perpetuate the belief that if a patient does not respond well to Doxycycline, then they will not respond well to other antibiotics. That is the fundamental flaw in the IDSA guidelines.

Did the Doxy make your twitching go away?

Were both bands 31 and 41 IgM?

I think they will only do the epitope test if the bands are both on same test (IgM or IgG)

Also - they may require your dr who ordered the test to request the epitope test.

But - having said that - both Dr H and Dr J (two of the top llmd’s in the US) consider band 31 to be enough to diagnose Lyme when used to back up a clinical diagnosis.

There are only a few “things” besides borrelia that band 31 can be.

Ashp9790 said...
The igenix test said :

igg - 41++ and 31+ indeterminate results
igm- 41 ++ only

I think they will do the test - I know they do for the igm

Thank you .. i called them and they said the doctor has to order it so I will ask my LLMD

Yes I definitely will