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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.
     
    SueJohnPat and Gingergrrl like this.
  2. PatJ

    PatJ Forum Support Assistant

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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
  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
    jesse's mom and Gingergrrl like 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.
     
    MastBCrazy likes this.
  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.
  10. Forebearance

    Forebearance Senior Member

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    @rijichouno , I am so sorry to hear about your situation.
    It's impossible for anyone to tell someone else what they should do, really. But most people seem to base their decisions on whether they are improving or not in their current home.
     
    SueJohnPat and Gingergrrl like this.
  11. humanrising

    humanrising

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    hi gingertgrrl
    I just did the urine mold test and tested positive for all 4 of the ones we tested for. I have to move due to finances ( trying to find section 8 housing). I tried treating ( shoemaker) years ago with no change or help back here again and fear its my house.
    I am scared to death that I may be facing the same gut retching possibility that you have........ getting rid of my precious belongings. I live in California, hoping you wouldn't mind sharing how much it cost to test your things and who did the testing in case I can use them where I live. so sorry that you had to go though that. thank you for sharing your experience.
     
  12. Gingergrrl

    Gingergrrl Senior Member

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    @humanrising I do not remember all of the different costs b/c all of this happened back in 2015 when I was having anaphylaxis and ended up in the hospital. We ended using three different mold companies and seeing a mold specialist (doctor) in Santa Barbara (and then hiring an attorney to try to sue our former landlord for the complete loss of our all of our property and my health).

    I can try to find out what it cost to test our belongings and who we hired if it would be helpful (but would have to find the folder from our attempted lawsuit). I can easily give you the contact info for the mold doctor via PM if that would be helpful. The rest will take me a bit longer to find. Just let me know and I am happy to look and send via PM later in the week.
     
  13. humanrising

    humanrising

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    gosh you are the kindest human!!!! thank you for the offer!

    again, so sorry you went though such a nightmare. Sure hope you were able to at least get a little money for all the loss and medical costs.

    I live in northern California so I am sure there are folks closer. I can do some hunting to find that out. so thank you for generous offer but no need..... thought the price might have been an easier question but it sounds like what you have been through was certainly not easy or simple in any sense of the word.

    I might take you up on your offer for the doctor name. I am just at the beginning of my second round of "its mold". My doctor wants me to read Toxic by neil Nathan and then come back to her to treat. So depending on how that goes and what she suggests I may continue with her or look for another doctor. I am still plan on trying to raise money to see one of the doctors who treat ME.

    I know what I should be caring about what is in my house and what levels for my health but honestly in regard's to my home I am freaking out more about if I am going have to get rid of everything.
    I am artsy crafty person who has been collecting little wonderful junky treasures to make things or to display. I have items from my budget travels from all over the world, collections of things my dear friends have given me over the years. I lost both of my parents and their photos and belongings are super special to me and then my many years of doing photography, nothing worth money but also nothing replaceable. My things bring beauty to my tiny world like most of us....where I live ALL THE TIME..... its one of the last things I haven't lost due to this bloody illness.

    Just praying that I will not have to "toss it all". I shouldn't be going to the worse case scenario but after 15 years I have finally exhausted my "its all good" things will get better, I am still so lucky attitude. I am sure I am not alone in that one. blessings to you!
     
    Gingergrrl likes this.
  14. Gingergrrl

    Gingergrrl Senior Member

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    That is so sweet of you and I am going to PM you the name and info of the mold specialist that I saw in 2015 as soon as I type this post. I've gotten 2-3 PM's in the last week asking about the mold testing companies that we used so I am going to go through the folder of stuff from our (attempted) mold lawsuit to find the info so I can share it with everyone who asked me. I wish I had everything re: my story in one cohesive place but I don't!

    Thank you and it was truly a nightmare. Sadly we lost everything (except our cars and a few items that we were able to have cleaned/salvaged) but we got nothing for the property loss or medical costs. We had a good mold attorney but the statute of limitations ran out on our case and there was nothing we could do about it. We took it as far as humanly possible, even though I was incredibly sick at the time, because we believed it was worth it. But in the end, we got nothing in return.

    I live in Los Angeles, and the mold doctor that we saw was about 2.5 hrs north of us in Santa Barbara but I can truly say (both at the time and now in retrospect) that she was worth it. We only saw her once in person, and she spent almost the entire day with us, and everything after that was done by phone consults or e-mails. She was able to help me medically, advise us re: our belongings/property, and legally.

    As far as the mold testing companies, there was one that we used who covered the entire state of CA but then provided local referrals (I cannot remember the name but definitely have the info in the folder that I am going to look through for you and everyone else who recently asked me via PM). We had a mold testing company hired by our former landlord, a second company that we brought in for our own testing, and a mold restoration company who tested our A/C unit, ventilation system, furniture, clothing, electronics, etc. All three companies found toxic levels of stachybotrys (black mold) and a total of 19 kinds of mycotoxins.

    The mold restoration company gave us an estimate that they could clean all of our belongings for about $20K but told us that in good faith, they could not take our money b/c nothing was salvageable (and there was no visible mold outside of the closet and A/C system). They said to please confirm w/a mold doctor (which we did) and she said the exact same thing which is that you can clean the visible mold but you cannnot kill the mycotoxins. She said if we cleaned and brought our belongings to a new apt, the same scenario would repeat and I would have no chance of getting better on the treatments.

    My ex-husband and I were in complete unison that we had no other option than to get rid of everything after three separate (and unrelated) mold companies plus a mold doctor told us the same thing. I had reached the point of having anaphylaxis to all food and honestly believe that I would have ended up on a feeding tube if I had not moved away from the mold and our belongings. I do not regret it even though it was very hard at the time. I ultimately found treatments that led to my remission but they would not have worked if I remained surrounded by toxic mold and my immune system never could have recovered.

    I totally understand and it was a brutal decision to give things up. We hired a company who was able to put our paper documents and photos onto digital drives so I did not lose my medical records, important papers, or photos. I have since re-printed and re-framed many photos. Sadly I lost the original copies of some photos of my grandparents and other things that were irreplaceable but nothing I can do about it now. We salvaged some items like our wedding album (and other wedding items that I really wanted to save) and now 3.5 years later we are (almost) divorced and I wish I would have saved other items instead :bang-head:.

    I would be stunned if your situation was as bad as ours. We moved into that rental in Nov 2012 and soon discovered a small leak in a hall closet and small amount of mold on one corner of ceiling in that closet. The landlord lied to us that he had fixed it but merely painted over it w/white paint. Of course the leak got bigger and the mold came back. We went through two mold remediations (where we had to move out at our own expense) in 2013 and 2014 and both were failures but we did not know until later (and if I had not been so sick, I am normally an excellent advocate).

    Finally the mold seeped through the closet wall into the HVAC closet and air conditioning unit which spread it throughout the entire a/c ventilation system throughout the condo rental. We had air-borne stachybotrys (and 19 other mycotoxins) at levels the testing companies had never captured before. At that point (early 2015) I moved out to my parent's house and never, ever returned to the rental b/c I was having anaphylaxis and ended up in the hospital. My husband, step-daughter, me, and my dog all all ended up living with my parents for about six months until we could find a new apt at the end of 2015. I regret that we ever moved in that condo rental but nothing I can do about it now.
     
    Shoshana likes this.

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