CFS: Forebearance's thread 29

Discussion in 'Fibromyalgia Main Forum' started by Forebearance, Apr 25, 2009.

  1. Forebearance

    Forebearance Member

    Hi everyone,

    Here's my report for the month of April, 2009.

    I spent the first part of the month messing around with my mattress situation, trying to find something I could sleep on. There were some rough nights of sleeping on the floor in there. Partly it was because I was too cheap to go to the Hampton Inn, and partly it was because even the Hampton Inn has chemicals that bother me. (although it's free of mold toxins)

    Finally I got a latex mattress wrapped in mylar emergency blankets all set up. I discovered that the mylar wrapping generated some static electricity when I tossed and turned, so I ran a wire from the mattress to the metal bed frame to ground it. That worked fine.

    I had a few days of bliss before the next crisis came along.

    I attempted to bring home my houseplants and set them on my patio. They had been exposed to a really bad strain of stachybotrys (I think) last summer in my temporary apartment. Since then, they had been re-potted twice, but apparently not carefully enough.

    I think that when I re-potted them I allowed dust from the old soil to get on the new pots and soil. Rats. I always underestimate how bad this particular mold is.

    Even sitting outside on my patio, the plants bothered me. The dust must have blown in my really drafty windows. I got quite sick and had to throw the plants away. It was probably foolish of me to try to keep them, but I was really sentimental about my houseplants. Some of them had been with me for decades.

    In addition, I am reacting more strongly to this mold toxin than I ever have before. Even the tiny, invisible amount that got into my house has really messed me up. I have had to remove all the textile items that were in the living room, which is nearest the windows. I have never been able to wash this kind of mold toxin out of textiles. All other kinds of mold toxins that I have run into have been able to be washed out, if the exposure was brief and they were washed right away.

    So I'm working on replacing my futon cover, afghan, clothes that were hanging out, etc. I have had to buy new bedding, because even a tiny bit of mold toxin can keep me from sleeping well. It must have gotten as far as the bedroom. The thing i can't replace is the wall-to-wall carpet. I've had to wear socks or slippers because if I walk on it barefoot, it burns the skin on the soles of my feet. Sigh.

    Various friends and family members have said that it's ridiculous. But what am I supposed to do? Tell my immune system to stop reacting because my loved ones think it's ridiculous?

    Meanwhile, I am wondering if I have permanently ruined this house, or if the toxins will die down in time. It would be very hard for me to move right now. But I need to be aware that if I stay here, I might not be able to keep making progress toward getting well.

    It's a tough choice that I might have to face.

    I've been spending as much time as possible sitting in a city park and getting fresh air. This experience has forced me to do that. I should have been doing it anyway, but since I didn't HAVE to, I put it off.

    I took Questran for a day after the initial toxin event happened, but then stopped because of my teeth feeing bad. It did help a little bit. Now I'm back on soluble fiber: four Benefiber caplets a day. And I'm still doing all the other usual supplements I do like methylation supps, colloidal silver, antioxidants, Virastop and Candidase.

    I admit that the latest Swine Flu scare is going to make me pick up an extra bottle of Virastop, juuuuust in case. Large doses of it would probably stop a flu.

    The only other thing going on is that the lump on the back of my neck is starting to shrink. Finally. Maybe it's a sign that I'm winning the war against whatever caused it.

    Oh yeah, one more thing. What's odd is that I've been getting less reactive to stores. Places that used to hit me in the kidneys slightly now don't seem to bother me. So it appears that I am getting less reactive to some kinds of mold toxins and more reactive to one specific variety.


  2. nink

    nink New Member

    I'm really sorry you are going through such problems with mold. I'm sensitive to it also, but compared to you, my reaction is nothing.

    I know this is a pitiable small suggestion, but can you get your doc to write a scrip for all the products you are having to use to try to manage this problem, so at least your expenses might be tax deductible?

    Are you getting any guidance from anyone about how to manage it, or relying on your own research? I know the "mold remediation" companies are extremely expensive, and still there is no guarantee. My understanding is that one might actually have to essentially tear down the house to its bare bones to get everything. Where are you supposed to live in the meantime?

    What is Virastop?
  3. Forebearance

    Forebearance Member

    Hi nink!

    Thank you so much for the sympathy and suggestions. You are right that my life feels like a nightmare at times.

    What happened to me was, after I got away from the toxic mold I was living in and began taking things to pull the mold toxins out of me, I became extremely sensitive and reactive to even small amounts of mold poison. Even a tiny amount can make me sick now.

    So what I am dealing with right now is a tiny amount of mold spores that drifted in on the air. It is not actually growing in my home anywhere. So I don't think remediation companies could help me.

    I am relying on my my own experiences and perceptions, and on what other people have said who are also hyperreactive to mold toxins because they are healing from mold poisoning. It seems that this hyperreactivity is an awkward stage that one must go through on the road to getting well.

    People who have CFS and have been exposed to toxic mold have been finding that just remediating their homes is not enough to allow them to get well. They usually have to move to a completely new place and start over with all new possessions in order to get better.

    The mold toxins stick to everything like tar and there is no way to remove them. You can remove the spores that carry the toxins, but not the toxins. (Well, some people think ozone might help a little with denaturing the toxins, and some people say that heating an object to 500 degrees F will denature the toxins.)

    So maybe you can see why I'm pretty paranoid about accidentally ruining the place I live and being forced to move. Luckily I'm only renting it.

    Virastop is a natural antiviral supplement that is made out of enzymes. You can read about it on the manufacturer's website: enzymedica. Or you can read about it on a website called enzymestuff.

  4. mbofov

    mbofov Active Member

    Forebearance - you are aptly named! I can't imagine going through what you are.

    Have you read about EFT - emotional freedom technique? The website is - many people are getting resolution of intractable health problems using this technique. I've tried it some, and found it's very effective with emotional issues, although it has not touched my physical problems yet, but I'm hoping it may eventually.

    I'm not in any way suggesting your mold problems are emotional, far from it. But the EFT technique works on an energetic level and maybe, instead of having to entirely remake your environment (which I get exhausted just thinking about!), you may be able to reprogram your body so to speak so it is not so sensitive. It's worth looking into. It's a very simple technique, and you can download the manual of how to do it for free from the website.

    I also receive an e-newsletter from them, and it talks about all the different types of problems, physical and emotional, which have responded to eft.

    I've done it on my own, and then a few months ago contacted an MFT therapist through the website and have done a few sessions with her over the phone. It's amazing - it can work really well over the phone, quite different than regular therapy. I've been dealing with some very early traumatic childhood issues which have not been touched before by regular therapy, and it is helping. Also, I negotiated a lower fee with her. I just selected several therapists from their list, e-mailed a brief synopsis of my problem (including CFIDS) and told them I could only pay $50 a session, and ended up connecting with a very nice and very skilled lady. I only do it twice a month, cannot afford more.

    Take care --

  5. Forebearance

    Forebearance Member

    Hi Mary,

    It's nice to hear from you. Thanks for thinking of me and for your suggestion!

    I actually do know about EFT and have done it. My experience with it gave me the impression that it is most helpful with healing from phobias and from past traumatic experiences. I couldn't get it to affect my CFS. I thought it was fun and interesting, but eventually I tired of it because the reward wasn't equal to the effort.

    How are you doing these days?

  6. mbofov

    mbofov Active Member

    I'm plugging along, not sure if I'm making progress or not. I was having a bad time being sick almost constantly for several months, with recurrent sinus problems and then alternately with digestive tract problems. I finally found a chiropractor where I'm living who does muscle testing and uses Standard Process products and, no big surprise, found my thymus gland to be weak, among other things, but that was the major thing. So I'm taking a thymus extract and a couple of other things. I did finally shake the bug for about a week, and then I overdid and so I crashed, and then got sick. I get sick every time I crash, without fail.

    So I still don't have a lot of stamina. I am back on the methylation protocol, and don't seem to be detoxing like I did before, so I think that's a good thing. I'm taking the supps every other day. I have to go out of town in 1-1/2 weeks - going to Dallas to see my twin sons and their families. I wanted to be well for the trip - it's hard enough traveling without being sick.

    Anyways, after that trip I will probably try taking the meth. supps. every day and see what happens.

    I do like doing the EFT with the counselor. I was tired of doing it on my own, similar to you - lot of effort with not much reward. But the counselor has gotten at things no one else has. She's very skillful - It's surprising to me. I think I got sick because of severe chronic stress for many many years so my hope (one hope at least!) is that if I keep at that, like pulling weeds, eventually may end up with a healthy garden, to play the metaphor out.

    Have you ever tried muscle testing? There are different types of muscle testing, but the one I've had best results with is that used by chiropractors who sell Standard Process products. If you call Standard Process at 800-558-8740, they can give you the names of some practitioners in your area.

    Keep posting - you are an inspiration!

  7. Forebearance

    Forebearance Member

    Hi Mary,

    I'm sorry to hear about how sick you were. That is too bad that you get sick every time you crash. It seems like that must say something about your immune system. I wonder what.

    I'm so glad the methylation supps are agreeing with you better this time! Woo hoo! I hope you keep the doses really small so you don't get into the scary detoxing mode.

    That is wonderful that the EFT is helping you so much! I am thrilled for you about that. I did it face to face with a counselor, but I suppose she wasn't as good as yours. I'm always in favor of anything that is non-invasive and non-harmful that helps people.

    No, I haven't ever tried muscle testing. Thanks for the info.

    I hope you have a good visit with your sons!

  8. mbofov

    mbofov Active Member

    I only see my kids about once a year - due to jobs luckily they are now both in the Dallas area so I can see both of them and their families at the same time (one used to live in Memphis). There are 5 grandkids - 2 little ones (one family), and 3 almost grown (the other).

    Re counselors: I've had a lot of experience over and the years, and unfortunately most of them are just not that skillful. They may be good for minor things (what job to take, etc.) but for dealing with deep-seated stuff, a good counselor is rare. I feel very lucky with the woman I've found. She is very kind but also very skilled and has a sense of humor too, which helps!

    I know Rich would say that my weak immune system is likely a result of a partial methylation cycle block, so I keep plugging away at that. Wish I could get over crashing too!

    Are you taking the methylation supplements?

  9. Forebearance

    Forebearance Member

    Hi Mary,

    Yes, I'm still taking the methylation supplements. I take tiny amounts of them, and I love them. In the right doses, they are wonderful. If you overdo it, they are painful.

    Over time I have been able to increase the amount of B12 I take without getting uncomfortable detox symptoms. But I still take the exact same amounts of the FolaPro and Intrinsi B12/Folate as I always have, because those amounts work the best for me.

    It will take me a while to use up the Intrinsi B12/Folate I have and then I'll switch to Actifolate as Rich recommends.


    Okay, moving on to May, my next thread will be called "CFS: Forebearance's thread 30".[This Message was Edited on 05/05/2009]