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Can I stay in my house? (CIRS/MCS)

Discussion in 'Addressing Biotoxin, Chemical & Food Sensitivities' started by rijichouno, Oct 11, 2017.

  1. rijichouno

    rijichouno

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    Hi all,

    I was diagnosed with CIRS in August but have been sick for 7 years. I developed MCS in February of this year. No real improvement yet on CSM and other binders, but my house isn't exactly ideal.

    We've had one ERMI score come back so far, on a bedroom on the first floor that's carpeted and is adjacent to a bathroom. We didn't know it at the time, but there was a mold patch on the toilet when the sample was taken. The ERMI was 21.9.

    I've since changed bedrooms - now a carpeted one on the second floor - but after some light cleaning with vinegar, I'm now reacting to the room and unable to sleep there. That downstairs bedroom is the only one I'm able to sleep in.

    I'm new to this arena, but I understand that many of you moldies take drastic measures in pursuit of mold avoidance. Is this house salvageable? Does anyone more experienced with MCS have any suggestions on mitigating these bizarre reactions?

    I could potentially stay with my sister, who lives in a newer house, but am reluctant to try since I could react to carpet, wood varnish, etc. and be unable to sleep.

    I'm located in Maine. Thanks for any help.
     
    Gingergrrl likes this.
  2. PatJ

    PatJ far and free I gaze

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    @Gingergrrl may have some advice for you since she has past unfortunate experience with mold exposure. I've tagged her, so hopefully she'll be along soon.
     
    Gingergrrl likes this.
  3. perrier

    perrier Senior Member

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    I'm very sorry to hear about your hardships. I bought a sanuvox machine. They claim it helps with mold. I also have house ozonated twice a year,but that kills surface mold.

    May I ask you, however, how is one tested for CIRS.

    I live in Canada. Like in Maine, there is constant moisture, and condensation.
     
  4. Gingergrrl

    Gingergrrl Senior Member

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    I can try but not sure how helpful it will be! @rijichouno, I lived in a rental with mold for approx 3 yrs and in our case, we ultimately had to move and lost all of our belongings. It started with mold on the wall/ceiling of a guest closet from micro leaks in several pipes. The landlord initially painted over it to try to trick us but the mold came back. We went through two mold remediations (from our landlord) that were not done properly and the mold spread through the wall to the other side where our a/c unit was housed and the a/c unit spread it air-bourne throughout our home.

    The air tester (hired by our landlord after the 2nd remediation) had failing results as did an independent air tester that my husband and I hired and paid for. We were referred to a mold restoration company (still hoping our belongings could be salvaged) but this now third company said they could not. They tested our clothing, furniture, electronics, etc, and all tests showed 19 kinds of mold/mycotoxins including black mold or stachybotrys.

    The level of stachybotrys considered unsafe was above .02 ppb (parts per billion) and ours was above 8.0! The mold restoration company had given an estimate to clean all of our belongings that cost over $20K and then they retracted it and said in good conscious, they could not take our money b/c our belongings were not salvageable (and there was NO visible mold on our belongings vs. inside of the a/c closet). They said the unit would need the entire a/c closet w/walls, ceilings, concrete floor, etc, to be torn out and our landlord refused.

    So we moved out and literally lost everything but our cars, some jewelry, and the clothes on our backs. I saw a mold specialist who is one of the top mold docs in the country and she confirmed that I stood no chance of recovery if we moved our belongings to a new home, especially the electronic devices with fans that would spread the mycotoxins into the air. And by that point, I had developed MCAS and had reached the point of being allergic and having anaphylaxis to all food but water and was hospitalized for a week.

    So I cannot say if any of this applies to you, and if you own your home it is more challenging than for us who rented, but I was extremely ill at the time and could not even stand up from wheelchair. I have no doubt if we had not discovered the mold and not moved, I might be dead now from an episode of anaphylaxis vs. I went on to do a mold detox protocol with nebulized glutathione and (mild) mold binders that I could tolerate.

    I later found my MCAS specialist and got onto the right mast cell meds and then began IVIG which put my MCAS into remission approx 15 mos ago. Other parts of my illness are still not in remission, but the MCAS is, and I have not had any allergic reactions to food or smells since I began IVIG... but I still avoid mold like the plague!

    Hope this helps and if you want the name of my mold doctor, will send via PM (except I am in CA and you are in Maine so probably not that helpful unless maybe she does Skype consults)? I saw her in 2015 in person and the rest were phone consults and e-mail (and have not talked to her since mid 2016 but recommend her very highly). She is a true independent and created the protocol she felt was best vs. following Shoemaker or Brewer's protocol.
     
    Last edited: Oct 12, 2017
    PatJ, Dainty and perrier like this.
  5. rijichouno

    rijichouno

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    Thank you for this. I did not get notified somehow. What's the name of the doc? And how do you get your belongings tested - will any mold remediation company do it?
     
    Last edited: Oct 14, 2017 at 3:56 PM
    Gingergrrl likes this.
  6. rijichouno

    rijichouno

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    RealTimeLabs has a urine mycotoxin panel. You can also take the online Visual Contrast Sensitivity test.
     
  7. perrier

    perrier Senior Member

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    Thanks. The Real time lab test was done. Positive in 1 category.
    But my understanding is that many CFS patients have tested positive in at least 2 categories. So are they CIRS and ME? This whole issue is very difficult for me to unravel.
     
  8. rijichouno

    rijichouno

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    From what I've seen, mold is much or all of the problem for a substantial subset of CFS patients, but not all. If you read the theory behind Rich van K's methylation protocol, he explains that he and some other experts believe that glutathione depletion is the central mechanism that triggers CFS; once that occurs, toxins and new pathogens take hold, while previously dormant pathogens can activate. Mold exposure could kickstart this process, but other types of stressors could as well.
     
    perrier likes this.
  9. Gingergrrl

    Gingergrrl Senior Member

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    I will PM you the name of my former mold doctor. We hired a mold restoration company (to test our belongings) that was very highly recommended to us by both the air testers that we hired and the air testers that our former landlord hired. They were local for our area but I can send you the name via PM if it would be helpful.
     
    PatJ likes this.

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