Hey, there. I’m away from home right now, but I will look it up later.

I do remember that all 3 normalized after initially moving out of my parents’ moldy house and my office and into a relative’s less moldy house.

My C4a tests were never sent to National Jewish Lab as Shoemaker says is necessary, so I have no way to know how valid any of my C4a tests were.

My TGFBeta-1 has fluctuated greatly. When first tested it was around 27,000. Three months after moving, it was 1,481 (normal). Two months later it was up to around 3,300 (high). That time, I had just left a moldy dentist office right before getting the blood drawn. I had also been on minocycline for a week at the time of the blood draw. I initially thought the rise was due to the mold exposure at the dentist, but later I wondered if die-off from minocycline could have caused it.

I had TGFB-1 retested last year. The first test last year was 17,000. A couple months later retested around 6,600. There were water incidences that occurred in the relative’s house in the last year and a half. I believe that was the cause.

The relative’s house is now terribly moldy with Aspergillus/pen up to 970 from 90 initially on ERMI (should be less than 10). HERTSMI- 2 went from 4 to 18. I haven’t retested any CIRS labs this year. I would be afraid to even know what they would be right now, as I am in a mess.

I’ll get back to you after I look up my C4a and MMP9.

Sara,

Was your C4a sent to National Jewish?

I also strongly suspect that CIRS...inflammation, CFS, PEM and lot more things, what Shoemaker said. MycoTOX profile ordered!
I will definitely share the results afterwards ;-)

My LLMD re-tested my Shoemaker CIRS panel recently, at my request, but he talked at length about how the field is moving away from them as indicators, now that there's a reliable mycotoxin test panel (Great Plains and Real Time Labs). The mycotoxin tests tell you if you have mycotoxin involvement, and the symptoms tell you if you have CIRS, so arguably the tests are less relevant now that people are more familiar with mycotoxin illness (thanks to Shoemaker's work). Many things in Shoemaker's CIRS panel are abnormal due to mold OR bartonella OR borrelia. So it's proof that your body is going through some challenges, for sure, but it does not tell you which challenges. Apparently this was a big topic of discussion at the environmental illness conference last spring. https://iseai.org/2019-conference/ There are some excellent notes from this conference posted in the archives here.

Personally, since I have had the panel run before, I liked being able to see my numbers inch toward more normal ranges, regardless of what was causing them to be abnormal.

Aerose, you ask about infections. I have borrela bergdorferi, bartonella bacilliformis, babesia divergens, HHV6, Epstein-Barr, and mycoplasma pneumoniae. I also tested high for ochratoxin A on the Great Plains mycotoxin panel. Treating infections actively has always made me feel bad the whole time, never better. Honestly I only notice improvements from treatments that focus on systemic wellness, not antimicrobial treatment. I have felt boosts from treating MCAS and POTS, DNRS, removing a wonky root canal tooth, and eating well. But I know many people have a different experience.

Yes, my c4a was sent to National Jewish.

Aerose91 said...

If you don't mind, im wondering what your MMP-9 and MSH levels are. Which lyme infections do you have? And have you seen any improvement treating them?

MMP9 - see post above
MSH - 19, <8, 11

Infections:
Positive testing for borrelia b., ehrlichia
Symptoms suggest bartonella, babesia (negative on DNA Connexions and Labcorp tests).

Improvement Treating:
I started Buhner’s protocols in Jun 2017 at tiny doses 3x day. I kept trying to gradually increase doses until April 2018, herxing just about all the time. In April 2018, I had a major gut expulsion of something - probably Candida mixed with ropeworm. I had so much gut inflammation that I stopped all herbs except knotweed for about a week and then gradually restarted.

When I restarted, I found I couldn’t tolerate 3x day or the previous amount and dropped down to 2x day and even tinier doses. Was able to manage better with less herxing then.

I had definite responses to the herbs early on. Knotweed and cats claw both increased my joint stiffness. I pushed through with the knotweed but dropped cats claw for a while. Didn’t have any real improvement until I started houttuynia and then sida acuta. I had some electrical pains in the head and muscle twitching when I first started those or increased doses.

As time went on, the long term stiffness in the small joints of my fingers and toes improved. After the gut expulsion I mentioned, muscle fatigue greatly improved but later returned somewhat as gut got worse again.

I can say that I have had brief periods of feeling improved, but never lasted longer than 2 weeks at a time. The last time I felt I was turning a corner was September of last year. Had 2 good weeks and was starting to think about the future again. I started trying to treat parasites around that time with an herbal formula, and that period if feeling better faded out quickly.

As you know, mold seems to be my primary issue. There have been a number of water incidences in my relative’s house since I moved there. I did not know until a month ago when I did another HERTSMI-2 how bad it had gotten. My labs in May (CD57, mycoplasma, chlamydia pneumonia, Vit D) confirmed I was declining. That’s why I did the HERTSMI-2 and MycoTox test. Mycotoxins are very high. That confirmed mold exposure is the cause of my immune system decline over the past year. My labs from April 2018 showed improvement in pneumonia titers and CD57.

My other primary issue is my gut. I developed sudden IBS-C in Sep 2015 months after a bronchitis infection set off a chain of inflammation in my body (that’s never gone away). That was the first time I saw ropeworm in my stool, but had never heard of ropeworm. Of course I was being exposed to mold at home and work then but didn’t know about all that yet.

Anyway, my gut has never improved except for a few days after that expulsion in April 2018. All this time (except for about 6 months in 2016), I have not tried to do a clean diet except for very brief periods. In the past 3 weeks, I have changed my diet a good bit, though definitely not perfect. Now I am having MCAS symptoms, which started about 5 days ago after I started fluconazole.

I can’t win for losing. I have too many issues that all need to be treated simultaneously and way too much toxicity with no safe environment in which to to heal.

Bottom line:
Yes, I have had improvements, but whether they are specifically tied to treating one infection is debatable. I initially thought my finger stiffness was from bart, but it could just as well have been from gut pathogens, pneumonia, or mold. When the mold got worse the past weeks, the finger stiffness and constipation got worse. Is that from mold directly or from mold suppressing my immune system and allowing infections to gain a hold?