CFS: Forebearance's thread (AV Enzymes, Methylation, Mold 22)

Discussion in 'Fibromyalgia Main Forum' started by Forebearance, Aug 1, 2008.

  1. Forebearance

    Forebearance Member

    Hi everyone,

    Well, it's been 22 weeks now that I've been taking Virastop, and I still like it as much as ever. I still think it's helpful, but I'm going very slowly right now because I'm concentrating on detoxing from mold poisoning.

    I still like the Candidase, too. And the methylation supplements.

    To summarize my situation:

    Now I am homeless at present. I moved out of my beloved apartment, which had grown a spot of toxic mold from a water leak. The spot contained aspergillus, penicillium, and chaetomium, all poisonous molds, as well as actinomycetes, a poisonous bacteria.

    It took me three months to plan and carry out my move. I put a lot of thought and effort into buying things ahead of time so that after I moved I would have underwear, shoes, clothes, and other neccessities.

    I moved into a temporary furnished apartment so I could recover a little and look for a new permanent home. But after a small water leak there, the maintenance guys brought in a fan to dry it out and something in the fan made me very sick.

    I suspect the fan had stachybotrys spores in it from someplace it had previously been. After being exposed to the new contaminant for four days, I was getting very scary symptoms. I also noticed that my liver seemed to have slowed down my detoxing process to a crawl. I was barely making any progress.

    What forced me to move out of there was that all my internal organs began to hurt a lot. And my throat hurt. And I was unable to sleep at night.

    After moving out, I developed
    symptoms of FM in my lower arms and legs and feet
    symptoms of arthritis in my left knee
    symptoms of IBS (irritable bowel syndrome)

    All these things made my life utterly miserable. There were several days when I could barely walk because I was so stiff and in so much pain.

    And this was from 4 DAYS of exposure to presumed stachy.

    It's really shocking how horrible this second wave of mold was. It's hard to believe how tiny an amount of it can cause me to feel terrible. I'm forced to avoid it, but at the same time I can't believe I'm doing these things.

    I've started all over with all new things, and this time I had to shop in a hurry. I only have one pair of shoes right now, and I am grateful for them. They're Crocs. I have the world's most hideous tote bag from Walgreen's because I am afraid to buy a nice purse again until I feel safe.

    Wed and Thurs I cleaned out my temp apartment with my aunt's help and put those things in a new storage unit. I'll sort through them later when I have time.

    I am waiting to hear back from the apt management, and it's not an encouraging sign. They may try to avoid me, so I'll go to the office in person on Monday and try to get things straightened out.

    One funny story: When I was cleaning out my apt, I was wearing the cheapest clothes I could find on sale at Target, so I could throw them away afterwards. I went to Lowe's to buy a Tyvek suit to wear, along with a respirator mask and goggles. The clerk at Lowe's asked to see my ID for a $29 credit card purchase! hee hee! I must have looked suspicious. Was it my outfit or the fact that I was using a Ziplock bag as a purse?

    Anyway, I wore gloves, too, and socks. The first day, any exposed skin got burned as if I had a sunburn. I spent three hours in there. The second day, I spent an hour in there and was less burned. (And I had goggles that day!)

    So it's a relief to get that done. I turned in the keys yesterday. My arms and legs are slowly getting back to normal. But yesterday, my aunt gave me a hug and she hadn't been wearing any protective gear, so now I have IBS back today. I don't think I'll mention to her that her hug made me sick!


  2. Elisa

    Elisa Member


    You poor thing - what an aweful ordeal - my heart breaks for you - moving is so hard and then the mold - just aweful...

    Remember you are a trailblazer - and you will find a's hard to be a pioneer though.

    Just want you to know I am thinking of you and hoping things improve!!!!

    God Bless You Forebearance!

  3. Forebearance

    Forebearance Member

    Thank you, Elisabeth!!!!

    I am thinking of you, too, and saying a prayer for you. So many of us are going through such tough situations.

    On a different note, I want to write in my thread that the herbal adrenal tonic called tunguska blast helped me a ton during both times when I had to flee my home. It kept me from collapsing when I way overdid it physically, and then it allowed me to sleep well instead of lying awake feeling wired at night.

    I really like the stuff. Even though it is sold by one of those dumb MLM companies. I was at a health fair and was given a free sample of it, so I tried it. As usual with me and supplements, a little bit was enough to produce an effect.

    I think I'm gradually starting to recover from this latest round of evacuating today. My goal is to go buy a couple more neccessities this afternoon.

  4. Khalyal

    Khalyal New Member

    I'm glad to hear that you are starting to feel a little bit better. My heart goes out to you, too. As Elisabeth said, you really are a trailblazer.

    Many hugs
    [This Message was Edited on 08/02/2008]
  5. Forebearance

    Forebearance Member

    Hi all!

    I thought it was time to update my poor neglected thread over here!

    I am presently living in a hotel, while I try to find an affordable, mold-free apartment. It is hard work to find one.

    Today I looked at four places, and got sick from the weird smells in them. It could have been bacteria, mold, or new building materials like paint, vinyl, and carpet. My chemical sensitivities are off the chart right now.

    It's hard to keep my morale up, but I'm trying my best.

    It's interesting how easy it is to live with one pair of shoes. It's not like I have a lot of fancy social events to go to this summer.

    By now I'm pretty much back to where I was before the second wave of mold (or whatever it was) hit my temporary apartment. The main difference is that my hotel room furniture is bothering me, and all other chemicals add on to that. If I had a safe, non-toxic place to stay I'd be pretty good.

    Well, wish me luck. I'm really eager to find a place to live and to get back to detoxing.

  6. redhummingbird

    redhummingbird New Member

    I wanted to wish you luck Forebearance.

    What a drag to have to be going through this!

    I laughed when you described your puchase at Lowes!

    Just wanted to say hang in there. You will find the perfect place.

    My thoughts are with you...
  7. Forebearance

    Forebearance Member

    Thank you, Red! I appreciate your good wishes!

    Yeah, it sucks to be homeless. It is a very weird feeling.
    Dressing like a bag lady seems to go along with it very nicely! lol

  8. cct

    cct Member


    What an ordeal.

    Your perseverance is amazing!

    I did not realize that Nebraska is so moldy. What is up with that? Are you living in a humid place in Nebraska?

    Have you considered leaving Nebraska for someplace that is drier . . Utah, Colorado, New Mexico, Arizona?

  9. Slayadragon

    Slayadragon New Member

    I think the whole Midwest has a lot of mold in the air.

    (Unfortunately, when big buildings that are filled with mold are blithely torn down, the mold goes into the air. It then floats around, bothering those of us who are super-sensitive even when we aren't inside.)

    Right now I'm at a very high altitude in Colorado, and the air is beautifully pure. And I'm functioning at 100% as long as I stay here.

    If I go down even a couple thousand feet (e.g. to 7000 feet), the mold in the air is quite bothersome. It seems to collect in "basins" (areas surrounded by mountains on all four sides) and just sit there since it doesn't get enough wind to blow it away.

    I keep saying to myself, addressing mold in this way _cannot_ be the answer to CFS. And yet, I feel so good now that I have done it (I was in bed 22 hours a day before I started this) that it's hard to stop.

    Feeling healthy is quite addictive! Once you start, it's very hard to go back no matter what the cost.

    [This Message was Edited on 08/14/2008]
  10. Forebearance

    Forebearance Member

    Hi Carron!

    Thanks for thinking of me!

    It's actually pretty dry here, compared to other places. But we did have some big storms that damaged a lot of roofs and chimneys. And I guess poorly-maintained apartment buildings can exist anywhere.

    I don't know if I could handle moving to any different town right now. I did think about it. I don't know what my future might hold.

    At least there is a lot of wind here. If wind clears mold clouds away, then I have it made. lol

    I'll watch out for those natural "basins", Slaya. Thanks for the tip!

  11. mbofov

    mbofov Active Member

    I am speechless over what you are going through with your mold problems. If I had to battle that on top of CFIDS, I don't think I could do it. No, rather, I know I couldn't do it.

    ktn105 posted a link to something very interesting called Tong ren, which offers free treatments over the phone. You can also pay for treatments. I know, it sounds hokey, but I had nothing to lose but the cost of the phone call (but it wasn't much as I have a 1 cent per minute calling card from the 99 cent store). Anyways, it is very interesting stuff, and may be able to help you. The website is I've spent a small fortune on supplements and treatments etc. and it's nice to have something free. I did one of the free conference calls last night, and I don't really know if it did something or not, but I think I felt a tingling. And again, it didn't cost anything so am going to do more of the free calls. There are some videos on Youtube of people talking about their experiences with Tong ren. You might want to look into it - it's free.

    Take care - good luck with everything you're doing -

    Best wishes,

  12. Slayadragon

    Slayadragon New Member

    Hi Mary,

    I have the same kind of mold problems as Forebearance.

    It is my belief that for me, the mold sensitivity is at the root of my CFS.

    Now that the mold issues are coming under control, I am getting close to being totally well.

    My hope is that I will get to being totally well (in terms of my functioning....the mold sensitivity may remain) soon.

    Best, Lisa
  13. mbofov

    mbofov Active Member

    It must feel so good to finally get to the root of your problem. I remember all the very hard work you've done on getting well. I'm really glad that you are almost there, even though you had to escape to the mountains to get there --

    You must be at a very high altitude, for 7,000 feet to be a couple of thousand feet down. I used to be able tolerate moderately high - e.g., around 7500, but then started getting altitude sickness as the CFIDS got worse. I think I read once that B12 can help with this, although I didn't know it at the time.

    I'm currently exploring more alternative healing modalities because I've done almost all I can with traditional medicine and nutritoinal supplements. I'll be giving Ashok Gupta's programme a try, as well as distance (free) Tong ren, which ktn105 recommended.

    And I'm starting up the methylation protocol again, which did help make my crashes a little lighter. Maybe it will take me further this time.

    Anyways, I have no doubt that you will eventually solve the riddle of your mold sensitivity. But am so glad you are finally enjoying good health!

    Take care -

  14. Slayadragon

    Slayadragon New Member

    Hi Mary,

    We're at 9500 feet here. And yes, it's really high! I've learned to get a hyperbaric oxygen treatment as soon as I arrive though, and that always pretty much resolves the altitude problem for me. The first time I came here I was dying before somebody introduced me to that treatment.

    I can't remember how long you were on the methylation protocol last year. Did you get any positive benefits from it?

    I decided it was time to write a thread detailing my own mold experiences. This "mold stuff" is really weird and somewhat complex, and it seemed like too much to try to explain it until now. If you want to read, the thread title is "CFS: My Life as a Mold Warrior, August 2008."

    Thanks much for the well wishes.

    Best, Lisa

    [This Message was Edited on 08/16/2008]
  15. Slayadragon

    Slayadragon New Member

    Hi Carron,

    Where in Colorado are you?

    We have an investment condo in Telluride, which we rent out during ski season and then visit in the summer.

    I love this state.

    Best, Lisa
  16. mbofov

    mbofov Active Member

    I think the methylation protocol did help make my CFIDS crashes a little lighter - I get over them quicker than I used to. Before when I crashed, I could not do the dishes until day 3 of the crash and now I can do them on day 2. And I don't get quite as exhausted when I crash, although the remedy is the same - to do as little as possible, next to nothing, until I get over it. And unfortunately I don't have much more stamina, still crash too easily, even though I get over them quicker.

    And unfortunately I still get sick every time I crash so the getting sick is actually worse now than the crash, for it can take a few weeks to get over being sick.

    Anyways, the MP did help me though, and I restarted it a few days ago and hope that if I can stick with it longer this time, I may get more results. I had to keep interrupting it this past year because of personal things but now I have a pretty open window to be detoxing and am making the MP a priority.

  17. Forebearance

    Forebearance Member

    Thank you so much for the support and suggestion, Mary!

    I think that the toxic mold is not on top of my CFIDS. I think it IS my CFIDS.

    When I read "Mold Warriors" I found Dr. Shoemaker's theory that CFIDS is caused by chronic neurotoxin poisoning made a lot of sense.

    So then I just had to figure out what my neurotoxin was.

    My symptoms were similar to Lisa's, so when she found out she had toxic mold in her house, I started looking into it. Sure enough, my apartment had it too. And I had the genotype that makes my body unable to clear mold toxins! It became really obvious which neurotoxin was bothering me.

    I already have more stamina than I used to before moving. And I have barely begun detoxing. I'm doing it super slowly, because my liver is touchy.

    I used to be able to leave the house every other day. Lately I have been leaving the hotel room every single day. The improvement is gradual but noticeable.

    I hope the methylating goes well for you this time! I love those supps.

  18. Forebearance

    Forebearance Member

    Well, I've found an apartment that looks promising. I will go sniff it next week, once the current tenant has moved out. If all goes well, I should be able to move in next week some time.

    It's terrifying to think of signing a lease and hooking up the phone, cable, electricity, etc. because I have been so burned! I know now how easily a place can become contaminated, and by a source I wasn't even thinking of. Who would have thought that a fan would bring in mold spores? What else might I not think of?

    It makes me paranoid. I'm afraid to buy any new stuff. Although I'm sure I'll get over that eventually. I've been working on a list of the things that I absolutely need, like a winter coat, so I can prioritize.

    You know, before I moved out of my moldy home apartment, I couldn't tell if a place felt like it had mold toxins in it or not. I didn't notice anything. Plus, I was wearing moldy clothing all the time, so I was carrying my own little cloud of mold toxins around with me.

    Now I'm getting better at noticing if a place makes me feel sick, but I'm still not a pro at it. I hope I will be able to make a good decision about this new apartment. I know it's a fairly new building, and the manager says it has had no water leaks, so that cuts down on the chances of toxic mold happening there.

    Fingers crossed!

    I have learned by doing some apartment hunting that almost all apartment building hallways have bacteria growing in them. The actinomycetes bacteria in my home made me sensitive to smelling all kinds of bacteria. Each apartment building seems to have its own variety, because each hallway has its own distinctive weird smell. They all make me feel sick to my stomach.

    Even my hotel has its own brand of bacteria in the elevator and hallways. And in some of the rooms. My room isn't bad, though.

    The apartment I am looking at has no hallways. Each unit has its own outside entrance. It means more bugs would get in, but there would be no weird apartment hallway smell. It seems like a good compromise.

    I'm continuing to get thinner, even though I'm living in a hotel room and stressing out about where to live and eating whatever I want.

  19. Slayadragon

    Slayadragon New Member

    Good for you with regard to getting thinner!

    That happened to me when I got away from the mold in my house too.

    I went down two sizes (from a 12+ to an 8+) in about three months.

    That's not why I decided to avoid mold, but it was a nice side benefit.
  20. Rrrr

    Rrrr Member


    i have not been on the immunesupport site for months as i've been too maxed out as it is with just the cfs yasko list and getting on the full yasko protocol.

    but i popped on immunesupport last night and today for the first time in months and what do i find? you and lisa both have made great, great strides forward on yr mold fronts, even with all these horrific struggles getting in the way (being uprooted twice!?).

    i read both of your recent posts, and i am so impressed with both of you!!!!!!!

    i want to write more, but can't right now. but on the mold front, i have all 3 of jeff may's mold books and hope to read them this month. i know i have mold in my house. it is just a question of what to do next: mold avoidance or mold inspection in the house. or another step i have not thought of yet...

    meanwhile, my love to you (and lisa) and my GREAT respect to you both.

    [This Message was Edited on 08/26/2008]