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I thought it was just histamine intolerance/MCAD but now I think it might be MOLD.

Discussion in 'Addressing Biotoxin, Chemical & Food Sensitivities' started by ChickenBear, Jun 11, 2017.

  1. ChickenBear

    ChickenBear

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    After years of feeling terrible and not getting any answers from my doctors, I've recently decided to embark on a solo effort to get my health back, based on a functional model. I've been sick since I was a kid, with various things, mostly inflammatory in nature. Here is a timeline:

    Childhood: (from around age 6-10)

    Developed serious asthma (hospitalized on several occasions) + allergies
    Chronic UTIs- structural issues ruled out
    Insomnia, depression and anxiety

    High School:
    Childhood issues persisted while CFS type symptoms developed
    Weight gain, hair loss, severe acne, ADD symptoms appear
    Diagnosed with Hashi's, aged 16 (to this day still take desiccated thyroid)
    Remission of some symptoms achieved after beginning thyroid treatment

    College:
    IC diagnosed and I had to drop out of school
    Lyme diagnosed and I was treated with IV abx 2x daily for 6 months

    Post College:
    Full remission of ALL symptoms except IC after Lyme treatment-for 2 years.
    (Keep in mind, my doc gave me EVERY medicine and supplement + dietary modification under the sun so it's hard to know what worked + why!)

    Late 20's:
    Weight gain, acne, hair loss, anxiety, insomnia + UTIs return
    Asthma (which had been less of an issue) returns
    Start getting hives with food

    Early 30's:

    Full blown histamine intolerance (two scratch tests negative for real food allergies)
    low blood pressure
    'Meniere's' type symptoms
    phelgmy back of the throat in morning
    drug + supplement intolerance
    pins and needles, fasiculations
    RA type symptoms in finger + tailbone
    memory/cognition issues
    brain fog
    panic attacks-briefly
    tests came back positive for EB


    My question is this: I had been doing a bit better when I decided to move to NYC. I moved into an old prewar building without central air, only dusty window units. There was no fan in my bathroom but I mostly tried to keep the window open after showering. There was a guy upstairs who was crazy and there were leaks in every room of my apt at some point. Management did very little to curb his behavior. By the time I was itching to leave (literally itching) the leaks had reached my bedroom and my ceiling basically a hole in it. All this dust/water came through and management sent people to repair it.

    Luckily, I was so frustrated with the whole situation that wasn't spending much time there by that point. I had basically informally moved back in with my family in Connecticut.


    But my question is, do you think mold could have caused the histamine intolerance?

    When I moved in, there had already been one leak. But it was in the back room, that I spent almost no time in.

    Roughly about 5 months after moving in, I have having a lot of hives with food.

    HOWEVER, it that period of time, I was doing a lot of other things that likely contributed to histamine issues like drinking a fermented kefir soda drink very often (because it helped my bladder) and taking Benadryl and Advil PM every night to help me sleep. I now know that too many NSAIDs can cause hives and perforate the gut.

    I then went to a acupuncturist/NAET specialist and the hives went away. I had great skin for a while and then did something absolutely stupid. As a birthday present to myself, I went and got fillers in my face. I thought it would be ok as my skin had been clear, probably for over a year.

    But a month of so after getting the fillers, the hives came back. And not only did they come on with food, they were there all of the time, like big inflamed plaques. I could barely eat anything, let alone leave the house.

    I have been struggling with the skin stuff since then. All normal allergies have been ruled out through back patch tests, biopsies, etc. My skin allergy derm (who is wonderful) is still mystified.

    Throughout this time, I was also dealing with a blackish strip on the grouting in my shower. I was a scared of it and in denial and so honestly, it just stayed there for a long, long, long time.

    Very slowly over time, its also occurred to me that my asthma has slowly gotten worse again. It had been pretty under control for a good long while. At the time mold didn't occur to me and I just chocked it up to city life, especially in the humid summers. I realized that I also had a minor infection in the back of my throat that would produce phlegm upon waking but would calm down for the rest of the day. I still have this- its been a few years, off and on.

    The third, and by far dumbest thing I did living in New York was to one day eat half of a pot brownie- from someone I didn't know very well.

    Of course I had a terrible, scary reaction and had to go the hospital. They gave me Ativan, laughed at me (it was a slow day in ER and I was happy to entertain I guess?) and sent me home.

    But my brain has never been the same since. I've listed all the symptoms above and won't get into them again here as this has already turned into the 'War and Peace' of health chronicles.

    I'm bringing up everything in detail here because on the surface, you could look at my story and say "Here's someone who moved to a dirty, exhausting city when she was still immunocompromised and made a few bad choices. And now she's sick."

    Obviously my health issues go way back BEFORE I was exposed to that apartment. So you might say, for example, that the Lyme (still not convinced of this diagnosis though) just reared it's head again, because the city was very tiring.

    But in the spaces between all those health crises, you could also weave in the mold exposures/leaks and it starts to tell a different story.

    I do not use recreational drugs at all and that episode was a one time thing so I didn't know this apparently until recently but bad weed can be moldy.


    So what if this is just about cumulative exposure?

    Apparently if you've already been exposed to mold and then you get exposed to more mold (again) in a different way (the weed) it can set you off in a way that a not previously exposed person might not experience?


    My question is, what the hell do I do know?

    I took the VCS test and got 80 out of 90 questions right. But they're still considering me 'toxic' because several of their questions were along the lines of "Do you think you've been exposed to mold recently" and of course I answered yes to all.

    But I sound sicker than I am. Supplements and various modalities and clean eating have helped to stabilize me quite a bit. I am off all topical and oral steroids for my skin. I only use the topical as needed now- once every few weeks.

    I am functional but when you read these mold stories it makes it sound like you need to burn all your stuff and move into a tent in the Arizona desert.

    When I went back to clean the apartment out with my mom, it was admittedly pretty dusty as I hadn't been there in a while. The next day I had really bad breathing problems (that then lasted for several days in a row) and the dizzy, spacey feeling had returned.

    I was reading about BTM last night and had basically concluded that I was doing my best and that I was not going to guilt trip myself for bringing all my possessions from my apartment back to my parents place and into my old bedroom. I was looking for a particular piece of clothing last night and I had to rifle through a bunch of the suitcases (still not unpacked) and I found what I needed and went to bed.

    This morning I woke up and my throat was really phlegmy again! More so that it's been in a long time.

    So now I'm back to thinking I'm going to have to burn all my stuff, all my family's suitcases and that we're going to have to rip up the carpeting in my bedroom where there are some piles of clothes from said apartment.

    I'm so, so tired and I feel like the Poor Health Carousel never ends. Tell me there's another way.

    P.S- I am so sorry this is so long. I just didn't want to omit anything important, to the puzzle. And for those who more vigilant about preserving what health they have, who feel like some of my actions seemed careless, you are right.

    It's just that I've been living a sort of half life since I was a kid, full of sad compromises, and when I moved to NY, I wanted to see if maybe it was all psychosomatic, or if I was just lazy as some people in my life kept trying to tell me. So I made some dumb choices to prove to myself that I was as healthy as everyone else.

    The problem is, I'm not. I never was.



    To anyone who's actually read this far, thank you thank you, you are my angel!
     

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  2. Gingergrrl

    Gingergrrl Senior Member

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    From my own personal experience with mold and severe MCAS, I believe that it can. I cannot prove it but I absolutely believe that my immune system fought the toxic mold in my unit until it just gave out and I became allergic to all food (at that time, not now).

    Most people with MCAS or histamine issues would not tolerate the Kefir or the NSAIDS but the Benadryl should have actually helped you. I do not do well with Benadryl, and for an acute reaction I used Atarax instead, but most people are okay w/Benadryl.

    I think you are way too hard on yourself and you did not know then what you do now. I constantly berate myself for choices that I made but at the time, they were all decent choices. It is only in hindsight, that I wish I could have done things differently (not taken a certain antibiotic, not had a minor surgery, not moved into bldg with toxic mold, and many others).

    We had to move and give up our belongings but we stayed in the same city and did not move into a tent in the Arizona desert LOL.

    I still think from sentences like this that you are being way too hard on yourself!

    I read it all (and am no :angel: and not even sure if anything I have said is helpful!) but would love to help you if I could. I was curious, are the photos that you attached a reaction from food or to the fillers that you had injected or something else?
     
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  3. ChickenBear

    ChickenBear

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    Gingergrrl, coming to my rescue yet again!

    The photos are from when I was like smack dab in the middle of all the skin stuff. I had had the fillers maybe like 5 months earlier, maybe more? And that photo was taken after I tried (and failed) to stick out an evening in a Chinese restaurant. I ended up leaving, obviously. Every item on the menu was like a histamine land mine.

    So has the Ketotifen really worked for you? It seemed like maybe it has?! If that's the case that's awesome!:)
    What other protocols have you employed to get better or at least stabilize?

    I'm just worried about all the stuff I brought back home with me to my family's house. I mean it's already sitting out, in my bedroom. If all the mold spores have been already released into the bedroom, what can I do? Maybe buy a ozone machine and just 'treat' my stuff for a few days and not go in?

    I read something on here about that.

    How do you get a definite conformation that you're dealing with mold? By testing your space? Or testing your body for mycotoxins?
     
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  4. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

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    Have you ever been evaluated for Lupus?
     
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  5. ChickenBear

    ChickenBear

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    When they did the skin biopsy, they said they were looking for autoimmune markers. They didn't find any. I've also had standard 'autoimmune' blood tests, which were supposed to encompass Lupus, RA, etc. Again they came back negative. This was recent too.
     
  6. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

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    I think Lupus is a tricky diagnosis. Did you see a rheumatologist?
     
  7. ChickenBear

    ChickenBear

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    No. Does it sound more to you like Lupus than MCAD/Mold?
     
  8. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

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    I don't know. I am not a doctor. I have read symptom lists and talked to people with Lupus in the past. Rashes come up, hair loss, pain, something with breathing, swelling, brain fog, can't remember what else. Google it, and google image the Lupus rash.
     
  9. Marigold7

    Marigold7 Senior Member

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    when I was living in a rental where they had simply painted over black mould, before I knew about this and the effect it had, I realised that when I was away from the house for a day, symptoms eased. Especially sinus pain . ( I only ever used Vicks for that ) . When I saw that surfaces were covered in black dust and asked a friend, she was appalled and realised why I was so ill. Stage 3 of black mould disease. Now I am in a mould free house and almost never need Vicks. I am in Ireland where we are much more laid back re eg testing and meds and really there was no need. It as there, I was ill, and when I moved, some symptoms eased.
     
  10. Gingergrrl

    Gingergrrl Senior Member

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    Did you ever have that type of skin reaction prior to getting the fillers injected? I'm wondering if the fillers caused a delayed reaction (although if you had it prior to the fillers, then maybe the fillers worsened something that was already brewing)? When I look back on my life, I had sub-clinical MCAS life-long but it did not become acute until after the significant mold exposure.

    Re: Chinese food, there is often MSG which is a trigger for histamine and other allergic reactions. Even though I can now eat high histamine foods including yogurt, red tomatoes, spices, etc, with zero reactions, I continue to avoid MSG, food dyes & preservatives, etc, b/c just too risky for me.

    Ketotefin was the first med that got my allergic reactions under control that I could safely eat again. I still had to take two sets of MCAS meds 30 min prior to eating any food, I avoided restaurants and high histamine foods, and continued to need Atatrax as a rescue med. The only thing that put my MCAS into remission was IVIG although I still cannot explain why or how! But Ketotefin stopped the anaphylaxis and was an excellent med for me and helped the mast cells to stop trying to kill me b/c I ate one bite of food :eek:. Other things that have helped me w/MCAS are Zyrtec, Pepcid, Quercetin + Vit C, NeuroProtek and Daosin (although I no longer take all of these meds anymore). I could also list a million things that did not help me b/c I tried everything back in 2015 when the reactions were acute.

    Our situation spanned three years but in the end we had two mold companies test our rental (one hired by landlord and one that we hired) and both found very high levels of 19 kinds of mold including toxic black mold which is very hard to capture from an air sample but they did. So we brought in a top "mold restoration company" who did swab testing samples of our clothing, furniture, electronics, etc, and the mycotoxin levels, including black mold, were the highest they had ever seen. In light of how symptomatic I was (allergic to all food at that point and I had already moved out of rental and staying w/my parents) the company told us it would not be safe to keep our belongings. They stood to make over $20K from us if they cleaned them but they said in good conscious they could not take the money b/c our items could not be salvaged. They asked us to bring the reports to a mold doctor (who we chose and had no connection to any of these companies) and she was in 100% agreement. So we lost everything we owned and only kept our cars and a few other items. But our case was extreme and not everyone would need to go to this level.

    It sounds like you are negative for Lupus and the standard autoimmune testing (as am I with the exception that I have Hashimoto's). Have you ever been tested for the less common autoantibodies vs. the standard tests? What started this part for me a little over a year ago was when a Neuro ran a panel called "PAVAL" from Mayo Clinic (he sent my blood to Mayo, I did not go there) and he said I would be negative for everything but I ended up positive for two of the autoantibodies.

    I agree with NGU and there is seronegative lupus and you do have many of the symptoms. One of my closest friends has lupus and is in remission now but at her worst, she had the butterfly rash on her face. It looked completely different than the rash in your pictures but I have no idea if it can present differently and she is the only person I can compare it with. At one point she had to get both knees replaced b/c the bones had died (due to Lupus) but now she is in complete remission and started a new career so anything is possible.
     

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