CIRS and HLA genotypes - need help/advice

I was initially diagnosed with CIRS from mold exposure in Sep 2016. I couldn't tolerate cholestyramine. I left my moldy house and workplace for a cleaner environment, but not clean enough to qualify for VIP.

In Jan 2017, after a positive DNA Connexions result for borrelia and ehrlichia, I took minocycline for 7 days. It also increased my symptoms and the doctor told me to stop and basically left me hanging after that. I began researching Lyme and coinfections and, for the first time, recognized many of the bartonella and babesia symptoms as "quirks" I'd had since infancy or early childhood.

As a result, I bought Buhner's books and starting taking herbs in June 2017 in an attempt to treat bartonella, Lyme, babesia, and the pneumonias. Here I am a year later still struggling and only tolerating tiny doses of antimicrobial herbs.

Every time I start focusing on CIRS, HLA genes, or read any of Shoemaker's writings, I start panicking, feeling like maybe it's all CIRS or mold, and I'm just genetically screwed and will never recover unless I follow Shoemaker's strict protocol, and that I'm just wasting my time and money trying to treat myself for Lyme/coinfections.

Questions for Those with CIRS Who Know Their HLA Type:

1) Is the Shoemaker protocol the ONLY way to recover?
2) Did VIP work for you - meaning did it get you to symptom free? Did it "turn off" your HLA gene expression to where you are now "normal" again? How has it changed your life as to where you can go and what you can do?
3) Do you know of any natural alternatives to VIP that will "turn off" the gene activation?
4) Do you know of any other ways to raise MSH?

Facts about Me:
- HLA Borrelia and Multi Susceptible
- very sensitive (could not tolerate cholestyramine; only tolerate tiny doses of herbs)
- have had extended herxes/flares following abx: 7 days of minocycline and again a year later with 7 days of Augmentin; symptoms were never affected by abx until after CIRS dx and leaving moldy environment (what does this mean)
- joints and gut hit the hardest
- have chemical sensitivities (MCS), mold sensitivities, EMF sensitive to a lesser degree
- low MSH (baseline was 19, 1st followup <8, last followup 13)
- CD 57 is slowly rising (baseline 39, 1st followup 48, last followup 86)
- titers for mycoplasma and chlamydia pneumonia are slowly improving
- TGFB1 fluctuates (baseline 27,000+; 1st check in new environment 1,481; next time 4,400; then 17,000+; then 6,000+)

I have new information on this from Shoemaker's latest publication. He shows a graph where Lyme patients' labs were checked prior to abx, after abx tx, and finally after CIRS tx. TGFB1 was one of the labs tested. It ROSE after abx treatment and lowered after CIRS treatment. So, I think I was right in my wondering if herxing had caused my TGFB1 to go up to 17,000. That test was done some weeks after I took Augmentin and had significant herx/flare in symptoms that lasted for months. Likewise, when I tested 4,400, that test was done immediately after one week of minocycline before the heavy herxing hit that also lasted for months.

Knowing I have CIRS and HLA gene susceptibility, especially the "dreaded" multi-susceptible gene, makes me feel scared and hopeless and wondering if there's even any point trying to treat myself my own way.

Based on everything I've said, do you have any advice, encouragement, or clarification to offer?

Post Edited (WalkingbyFaith) : 5/27/2018 8:22:28 AM (GMT-6)

Astroman,

Thank you for responding.

1) C4a

According to Shoemaker, C3a and C4a are supposed to be sent spun and frozen to National Jewish lab. Mine were not, so I don't know how valid my results were.

Initial labs went through Labcorp. C3a was normal and C4a was somewhat elevated but nothing dramatic. The followup test I had was done wrong.

2) HLA-DR is the CIRS thing. It's been a while since I went through this, but I don't recall double alleles although I'm not sure I knew what that was at the time.

I say HLA-DR, but I remember DQ being in the report also.

Yes, I'm sure genomics will be forthcoming, but in the meantime, I worry. I saw another drug commercial on tv last night advertising to stop joint inflammation. My symptoms started almost 9 years ago and went full blown and constant 3+ years ago. I worry what the non-stop inflammation and dysfuction is doing to me. Will it be too late?

I'm just feeling low and scared lately. If it's all about turning off gene activation and not about treating infections, then I'm barking up the wrong tree.

Then again, late, disseminated infections combined with toxic environmental exposures could be what activated the bad genes in the first place. Plus, if infections are beside the point, then my CD57 and pneumonia titers wouldn't be improving, would they? And what about how I've reacted to abx. If my Lyme/co is latent and not active, would CIRS from mold cause the same symptom worsening following abx?

I am pleased about the CD57, but I also have a concern there. If the increases were due to the 7 days of minocycline and later 7 days of Augmentin and not due to the tiny herbs I'm taking, that opens another can of worms. If I never take abx again, will the herbs get me there?

So many unknowns. So little reassurance.

I ran into the C4a test issues last summer....yep, Quest stopped doing it so I went to the local hospital.

One of the "blood draw techs" there did some research on this test, contacting NG Labs, to see what was needed and transportation methods,. They handled it correctly in sending it to NGL. I thanked her profusely as she went above and beyond helping me out.

There are more than a few HLA variations depending on how detailed ones gets in choosing the decoding of 23andMe data. I always forget the DR is the one Shoemaker mentions.

All this stuff can be trial and error with trying to solve, no fast way to do it. I wish all this new info was available twenty years ago though.

Hey, Hoagie.

I started CSM with 1/4 dose 1 x day but ramped up too fast. I took high dose fish oil for 30 days prior. I was told I didn't need a special diet, that it was for those with MARCONS or Lyme and my tests were negative, so I was told. (I had bands 41 and 66 positive on WB ). At some point, I would like to try pure CSM and try various methods of dosing with it.

I've been taking 5+ grams of Pectasol-C modified citrus pectin for over a year now, so it's not like I'm doing nothing. I also retested with Realtime labs a few months ago, and I have cleared the mycotoxins I initially tested positive on. All the toxins were below range this time, but the actual numbers show I'm being exposed to different toxins now.

I should be moving at some point. I just pray to God that it is a better, cleaner environment. I live in the South where there's high humidity year round and there are no trustworthy mold remediators to be found. Everybody here thinks mold is everywhere, so it must be harmless. Three mold remediators said there was no reason to remediate the crawlspace because every house here has mold in the crawlspace. Wow!!! Doesn't that inspire confidence in these so-called professionals.