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» LymeNet Flash » Questions and Discussion » Medical Questions » mycometrics results and should I start CSM? and other mold freak-out questions

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Author Topic: mycometrics results and should I start CSM? and other mold freak-out questions
paleogal
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Our apartment ERMI came back at 8.28 - which I guess is too high for someone with an HLA DR haplotype 4-3-53 (wow, I never would have predicted I would write a sentence like that ever in my life).

So, the next step of my protocol was going to be to add in cholestyramine, but from what I'm reading, it sounds like I should instead focus on moving?? I don't have nearly enough energy....or money...to do that. and how do I know the place I move to isn't also moldy?

We have no visible mold or musty smells, but we did have a water leak in the ceiling (I live in a 1940s apartment building) last year some time. I did live in a remediated place back in 2007, we think, so maybe current mold exposure isn't a problem?

Also, what is the effect of just background moldiness? As in, I live in CA and it's wetter than where I'm from (AZ), so should I be thinking about relocating entirely? Or is it possible to find an apartment in a medium-humid climate that isn't moldy??

Sorry for all the questions - I'm feeling kinda overwhelmed by this mold stuff....just when I thought I had a handle on how lyme treatment was going.

Posts: 232 | From Southern Arizona | Registered: Jun 2015  |  IP: Logged | Report this post to a Moderator
bcb1200
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The mold stuff IS overwhelming. Full stop.

First off, the 8.28 ERMI isn't that high. Yes it is higher than what the Mold docs want (<2), but it is about average in the USA I believe.

What was your HERTSMI-2 score? This is what is really important as Dr. S shows this is really what matters with mold illness Download it here and plug in your numbers. http://www.survivingmold.com/diagnosis/hertsmi-2

I agree with Lyme it is good to get out of mold. That being said it is easier said than done. I live in the North East and most homes have some sort of issue. They had a water tank leak once, or had ice dams, or the sink overflowed years ago. New houses are usually worse because they are cheaply made, with poor quality materials, etc.

A friend of mine looked at more than 30 houses and did HERTSMI-2's on all of them and ALL were bad except for 2. That is a scary thought.

And May Dooley from www.moldcontrolonabudget.com and www.createyourhealthyhome.com states she has evaluated more than 3500 homes and has only found a dozen to be completely "mold free." See this halfway down the page. http://createyourhealthyhome.com/cutting-edge-information/

So just keep that in mind. It is very tough to find a "Mold free" or "low mold" place to live.

You may also want to get the Dr. S labs to see if you have active mold illness (C4A, MSH, VIP, VEGF, TGF-B1, etc). Mine were not that bad, but I then did the RealTime Labs Urine test for Mycotoxins and they were through the roof. YIKES.

So..I'm working on mold as of now.

--------------------
Bite date ?
2/10 symptoms began
5/10 dx'd, after 3 months numerous test and doctors

IgM Igenex +/CDC +
+ 23/25, 30, 31, 34, 41, 83/93

Currently on:

Currently at around 80% +/- most days.

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BartHeart
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My HERTSMI was like 29 *even after remdiation* (can't remember exact number, think I blocked it out!).

Still waiting to retest again after taking additional measures to mold-proof everything, but it's pretty horrifying. Anyway, I've heard the same thing -- that in general testing, *almost all* houses test relatively high.

I've had mold-sensitive friends in my house since the super high test, and nobody can actually smell the mold now.

I too have the mold detox gene problem too. At this point, though, I don't know what to do but keep trying to fix where I am.

When I lived in the Bay Area at one point, there was mold growing on the windowsills-- and I hate to say it, but I definitely do think some places are just vastly worse than others.

Posts: 30 | From Massachusetts | Registered: Jan 2017  |  IP: Logged | Report this post to a Moderator
lymeandceliac
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Very interested in learning more about this but I'm totally lost! LOL Where can I learn what these things mean?
Posts: 81 | From Southern Ontario | Registered: Jul 2016  |  IP: Logged | Report this post to a Moderator
paleogal
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Ok I calculated the HERSTMI-2 (thanks for the link bcb1200) and it's only 6. That looks "safe"! I mean, 0 would be better, but maybe this is an ok environment for me to get mold treatment in??

I had the full Dr. S labs (my doc ordered those, and I decided on my own to test my apartment). Here's what I know:
C4a: in progress - was drawn at last appointment
VIP: 33.7
MSH: 19 (low)
MMP-9: 384 (high)
VEGF: 55
TGF-B1: 5040 (high)
AVP/ADH: 1 (is this low?)
Leptin: 20.4
Osmolality: 288

Oh and I have Marcons in my sinuses, apparently. Did a month of the BEV spray and no real change (probably because there's still a mold problem underneath it all).

I saw on here some folks with really really high TGF-B1 (20,000!), so I don't think I'm that bad off, but I do want to clear up any mold issues I have so I can start tolerating exercise, losing weight, and get un-medicated sleep.

bcb1200 - Did you have to get your doctor to order the urine test?

BartHeart - did you do a full remediation? Or just clean really well? Where did you find info on cleaning materials that really work for mold? I've seen conflicting stuff all over the web....

Thanks for your input, everyone.

Posts: 232 | From Southern Arizona | Registered: Jun 2015  |  IP: Logged | Report this post to a Moderator
WPinVA
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I am working on mold too. Unfortunately, all the the mold tests have their limitations. I have found it more useful to look at the raw counts on the ERMI test rather than just the score.

I'd start by checking out that water leak in the ceiling.

There are some good mold groups on Facebook - Mold Avoiders, Toxic Mold Support.

also check out Surviving Mold and Paradigm Change websites.

I used to think Lyme was complex, then I started getting into mold research.

Posts: 1737 | From Virginia | Registered: Aug 2011  |  IP: Logged | Report this post to a Moderator
MichaelTampa
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HERTSMI-2 of 6 is great!
Posts: 1927 | From se usa | Registered: Mar 2010  |  IP: Logged | Report this post to a Moderator
   

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