CFS: Forebearance's thread (AV Enzymes, Methylation, Mold 20)

Discussion in 'Fibromyalgia Main Forum' started by Forebearance, Jun 2, 2008.

  1. Forebearance

    Forebearance Member

    Hi all,

    Well, I've been slacking off taking Virastop because I've been moving. Now I remember what happens if I stop taking it. My sinuses go crazy, and I feel like I'm getting a head cold.

    Methylation is still going along fine. It's a no-brainer by now. I just take the stuff and forget it.

    On the mold front, I have completed my move but still haven't had that little talk with my landlord yet.

    For everybody out there who thinks that they couldn't move to avoid mold in their living space, because it would be impossibly hard, I was right there with you. I couldn't even IMAGINE moving.

    But, I had a strong gut feeling that mold was an issue for me. So I had the spot on my carpet tested, and sure enough there was toxic mold growing in it. Then I had some blood tests, and sure enough, my immune system shows signs of being really irritated in the way that mycotoxins irritate immune systems.

    My motivating factor was that I really want to get well.

    So I did it, and it was extremely hard. It was physically hard and emotionally hard. I had to hire, beg and borrow a ton of help from all kinds of people in order to do it.

    Now I feel like I have lost my life. It's like dying, in a sense. If you are a materialistic person and you no longer have any of your possessions around you, it feels that way. It's a shock.

    Hopefully I will be reborn and start a new life. I thought of that Bible phrase about how you have to lose your life in order to save it.

    Nearly every night on the news I hear about someone who has lost all their possessions because of a tornado or a flood or something. At least I got to choose which possessions to get rid of and which to keep in storage. I am lucky by comparison.

    I mean, I had time to scan in all my favorite pictures to my computer!

    So, here I am in my new strange apartment. I am already feeling better. I've been working so hard the last few days that I would normally be bed-ridden by now. I'm not feeling as bad as I should be.

    The next-to-last day in my old apartment, I worked there all afternoon without wearing gloves. My hands became red and swollen and irritated. So the last day I did wear gloves.

    After the red stage, my hands progressed to aching and stiffness that felt like arthritis. And now they are numb. It's like they are asleep sometimes. It's kind of scary, and I hope this is a temporary symptom. I hope I don't have nerve damage or something.

    It seemed like the mold was really taking off this spring, so I am really grateful I got out when I did. The air in my old apartment felt stale and musty and thick when I went there to work on it. I can't believe I was LIVING in that!

    In the not-doing-this-perfectly-in-spite-of-planning department, I had to pick up my new car on Saturday, before I had the chance to go home and take a shower. So I sat in my car all sweaty and moldy for a part of a day. Now the steering wheel is irritating my hands a bit and I'm thinking "Great! What have I done!?"

    I guess I'll try what you did, Lisa, and go vacuum it out a lot. Maybe I'll look for something to put on the steering wheel.

    I have a few mold-contaminated items sitting around my new apartment, and so far I haven't noticed them bothering me. Now that the main move is complete, I will wrap up all these loose ends and do something with these bits of stuff. I want this place to be mold free before I start doing any more detoxing treatments.

    [This Message was Edited on 06/13/2008]
  2. Forebearance

    Forebearance Member

    I had the talk with my landlord last night and it went well. We talked for about an hour. By the end of the time, he was beginning to grasp that he would need to hire a professional to help him deal with this problem and fix it.

    He didn't even know what toxic mold was!

    But I think losing me as a tenant was enough motivation to get him to learn more about it. And he was very sorry about the effort and expense I've had to go through.

    And he didn't blame me for the problem, which was a relief. You never know how people might react to things.

    I also explained to him that I didn't want to tell him about it until I was safely out of my apartment, since any messing around with the moldy spot could have been harmful to me. (And knowing him, he'd want to mess around with it.) The mold releases a lot more spores if you disturb it, I am told.

    So I am relieved and glad that is over. Whew. The cat is out of the bag. It was hard being so secretive for so long.

  3. Slayadragon

    Slayadragon New Member

    Sounds like a good conversation, and now one more person in the world knows about toxic mold. At least it's a move in the right direction.
  4. Forebearance

    Forebearance Member

    Yes, I think that landlords especially should know about toxic mold. It's their responsibility to know about it.

    In a way, it was lucky that I am so sensitive to mold poisons. This way my landlord can head off the problem before it becomes a big one. He can fix my apartment and the laundry room and know that everyone else in the building is probably all right.

    I've been nauseous yesterday and today, but not actually vomiting. I'm also sleepy and tired and craving protein.

    I wonder if the methylation supplements I take are already causing me to detox from the mold a bit. I haven't even started the Noni juice or the soluble fiber! I was planning to start those next week!

    Because I sorted and packed my apartment before I moved out, I was still feeling quite sick while I did it and I had to really push myself. I am too exhausted now to go clothes shopping. I bought a few clothes and shoes before doing this transition and kept them in a plastic tub in my garage. But the one thing I didn't find was a bathrobe. Now I really wish I had one!

    A bathrobe is essential for the CFS lifestyle! lol


  5. Forebearance

    Forebearance Member

    I've been playing a game called "Let's see what survives the dishwasher!"

    So far, my favorite hair barrettes have survived, my Crocs shoes have survived, my dryer balls have survived (but still feel prickly) and various other misc. items have survived. I haven't tried to dishwash anything yet that has melted.

    The things that made it through the dishwasher feel okay to touch to me now, except for the dryer balls. I'll try sending them through again. They're not that expensive, it's just that I hate to throw perfectly good items away.

    Slowly, I'm starting to get organized and pick up the new place. It seems like I have a thousand errands to do and all I want to do is sleep.

    I took a Candidase and a Virastop last night after being off them for a while and I can feel it today. I am wiped out.

    [This Message was Edited on 06/05/2008]
  6. Slayadragon

    Slayadragon New Member

    I think it may be time for you to make friends with eBay in terms of buying things like bathrobes.

    I'm talking about new stuff being sold on eBay, of course. I wouldn't want anyone's old stuff to begin with, and certainly I wouldn't during mold recovery.

    A high percentage of the stuff on eBay (especially when it goes through PowerSellers) goes directly from the manufacturer to the eBay sellers' homes. It's a lot easier for them to get rid of discontinued items that way than any other.

    You'd think that there would be a chance that it would have gotten hit with mold at the sellers' homes, but (after maybe three dozen purchases) have yet to find that to happen. Only a small percentage of homes have poison mold problems, it seems.

    On the other hand, warehouses of retail chain tend to have lots of poison mold, possibly affecting the garments before they ever get to the store. And in any case, most stores have enough mold (sometimes from primary mold growth and certainly from the poison on stuff being sold in the store) that retail shopping is not the most fun activity for Mold Warriors anyway.

    It's better to try some things on, and so eBay may not be appropriate for everything. I'd go straight to eBay for a bathrobe though. (Plus it's likely to be a better deal there.)

    Just be sure to open the USPS packages outside and not bring the envelopes/boxes inside. Apparently the USPS has mold in its warehouses since those seem universally contaminated.

    Interesting that your mold sensitivity seems to be manifesting itself in terms of skin reactions. Maybe your system hasn't cleared enough for you to be getting inhalation hits though.

    Probably I should put some of my stuff from the house through the dishwasher and see how it does. I'm not sure what those things would be though. The things I want to keep are all large (stained glass) or electronic or wood or cloth.

    Right after I moved out of the house, I put some sealed bottles of Traditional Chinese Medicine pills through the dishwasher. They were better, but I still didn't feel entirely comfortable with them.

    Maybe it was my imagination, though I don't think so.
  7. Forebearance

    Forebearance Member

    Yeah, I don't think it was your imagination either, Lisa. You're very good at picking up mold poison.

    I haven't bought anything on eBay in ages. I would like to try bathrobes on, preferably, but maybe I will take a look over there.

    If things that have gone through the Post Office bother you, what do you do about things like catalogs and magazines? I can see how you could throw away envelopes right away, but I am stumped about those keeper mail items.

    Also, I'm stumped about my credit cards. I have them in a baggie in my purse right now. But every time I have to use one, I have to take it out and wash my hands afterwards.

    I picked up my old "Mold Warriors" book from my doctor's office today, and promptly threw it in the dumpster. I ordered a replacement copy.

  8. Slayadragon

    Slayadragon New Member

    Stuff that's been sent through the mail doesn't bother me anything like the envelopes that the USPS distributes for free.

    They are so consistently contaminated that I think they must be stored somewhere filled with mold before being distributed.

    Probably the facilities that regular mail goes through have some mold too, but the mail wouldn't be there long enough to suck much mold up. Plus I think it's in bags most of the time.

    I really think that no paper is good, since it seems to suck up any tiny little bit of mold poison that hits it and clings to it for dear life. Erik said he had a 10-year-old book that still hadn't mellowed out.

  9. Forebearance

    Forebearance Member

    Lisa, that's good to know that regular mail doesn't bother you so much. What is the stuff that the USPS distributes for free? Even junk mail flyers have to pay a small postage.

    Thanks, Kelly! You know what it feels like to be moved and in a place with all new stuff? It feels like I'm not being tortured any more. I'm still exhausted, and not in great shape, but at least the constant torture of my immune system has stopped. What a relief!

    Imagine someone who was just taken off some torture device. They'd collapse in a heap. But it's still better than being on the thing.

    (I often told people that having CFS was like being Wessley near the end of the move "The Princess Bride". It's like being mostly dead, but not completely dead.)

    I'll be interested to hear how things go for you. I wonder, too, about your current house. It would be great if it was mold-free! I hope the methylation supps will agree with you this time. I take just a tiny bit of the Perque B-12 to keep the detox at a manageable rate.

  10. Slayadragon

    Slayadragon New Member

    If you go to the post office, you will note that they have Priority Mail envelopes and boxes that you can pick up.

    Then you can use them to mail things to people through the USPS.

    Most eBay sellers use them.

    I even used some recently myself. My sensitivity is (most of the time) at a level now that they don't bother me.

    They certainly did earlier on though.
  11. Forebearance

    Forebearance Member

    Oh, those things! Thanks for explaining that, Lisa.

    Oh sure, I see what you mean about many eBay sellers using those.

  12. Forebearance

    Forebearance Member

    I got my last two test results back! I stopped by my doctor's office and chatted with the lab manager, who it turns out is not annoyed with me at all. She said the test results didn't go through her. Chances are, they were sitting in a pile of stuff waiting to be filed. So she spoke to the nurses and finally today I got them in the mail! Woo hoo!

    My MSH is 29. Normal is 0-40. So I am within normal range on that one.

    My gene test showed that I have one mold-sensitive gene and one gene that makes me susceptible to low MSH.

    How about that! I don't have the "dreaded genotype". But it shows that it was the right decision to leave my apartment. It's good news all around.

    Now I need to re-read the parts of Mold Warriors about MSH so I understand what the susceptible to low MSH gene means.

    Today my mom helped me finish organizing my storage unit. I wore gloves, but no mask, and seemed to be fine. Of course, I took a shower and washed my hair as soon as I got home. And of course, I'm really sore from lifting plastic tubs. It's a relief to get the shelves in and everything put away neatly.

    We've also been washing my dishes in the dishwasher. I'm not sure it's going to work. I touched some of them with my bare hands while unloading the dishwasher and they still felt "prickly" to me. So it's still kind of up in the air about whether I can get them to an acceptable state.

    Metal and plastic things seemed to be cleaned fine in the dishwasher. It was the glass things that were iffy.

  13. Forebearance

    Forebearance Member

    Thanks, Kelly!!!!

    I do seem to have a little more stamina now that I have moved. Although I am still recovering from the exertion of moving. I'm in a hurry to get my things squared away so I can move on to the next phase of my recovery.

    As soon as I've dealt with all my old possessions, I'll start taking soluble fiber and Noni juice. I can't wait!

    And I'm trying to take advantage of my mom while she's here visiting.

    Thank you for the idea about the white vinegar. Denaturing mold poisons is really challenging!

  14. Forebearance

    Forebearance Member

    I have paid the bill for the two tests I had done at Lab Corp. The MSH and the gene test together cost $143, because Lab Corp is in my insurance company's preferred provider network. I think that is pretty reasonable for two important tests.

    Well, a few days ago I re-potted my plants because every time I walked by them I could smell mold in their soil. They seem happier now. It was rough on them to live in my moldy apartment the last two years. They hardly grew at all. I put them in new pots with new soil and shook all the old soil off their roots. So far, since I've done that, they don't seem to be bothering me.

    I'm freaking out a little bit because the particular mold-sensitive gene I have is the "17 2 52A" gene, and that is one of the genes that is associated with a risk of celiac disease. It doesn't mean I have celiac disease, but I had better watch that issue.


    [This Message was Edited on 06/16/2008]
  15. Forebearance

    Forebearance Member

    I've been sleeping until 10:30 AM for years and years. Yesterday I found myself unable to sleep past 8 AM. My body just wouldn't do it! And the same thing happened today. I'm so wide awake and unsleepy that it's pointless to lie there and try to get back to sleep.

    I'll have to adjust to a new schedule.

    In other news, I found a bathrobe and I am SO happy. It's amazing how much you appreciate something like that when you have nothing.

    I have no jewelry, no makeup, and no socks at the moment! hee hee! I seem to be surviving all right.

  16. Slayadragon

    Slayadragon New Member

    I've been waking up a lot earlier too since getting away from the mold. And I have no desire to go back to bed until evening. I still periodically can spent hours doing the "lying on the couch as if shot with a tranquilizer dart" thing, but it still seems an improvement.

    I recommend an ultrasonic cleaner for jewelry and other small metal or plastic items like keys. None of the stuff I've put through mine bothers me at all. It was a real surprise.

    Now, if only I could get a huge ultrasonic cleaner to put all my stained glass lamps in, we'd be getting somewhere. Do you think they make such a thing?
  17. Forebearance

    Forebearance Member

    Hey, Lisa, have you put your credit cards through the ultrasonic cleaner? It would help me a lot if I could do that.

    I hesitated about putting them in the dishwasher! lol

    Well, do you think an ultrasonic toothbrush would do anything for the lamps? That would be a big job, though. How about an ultraviolet light wand? I've seen them in travel catalogs to use to sterilize water and bedsheets.

    I still need a couple naps every day, just like I have been doing. If I get up at 8, then I crash by 11 or 12.

    Tonight I was working on some important papers and misc. stuff that I have in plastic bins and need to sort, copy, etc. I started to notice that the items have a smell to them. And I started to feel sick to my stomach from that smell.

    So I feel like my time to work with that stuff without a mask is running out. I'm going to get as much done this weekend as I can.

    There was also a spore-producing bacteria in my apartment rug, and it made a lot of spores, I think. I think that might be why the air felt thick and dense and murky in there.

    On the other hand, going to the mall with my mom didn't bother me at all, that I could notice. But as I get better I bet I may become more sensitive to the toxic mold in the world.

  18. Elisa

    Elisa Member


    Just checking in to say HI and so glad things are going well. You sound great - a move can be a very positive thing.

    I sure hope this is the beginning of your recovery. That would be GREAT!

    I've done the whole mold thing - its tough - be sure to keep your humidity under 50% and ideally around 40% year around. I have two dehumidifiers in the basement. And I just bought an IQ air cleaner - there are really cool videos on air cleaners on youtube.

    Keep up the amazing perserverance Forebearance - as I have always said you are a real trailblazer!

    God Bless,

    [This Message was Edited on 06/13/2008]
  19. Forebearance

    Forebearance Member

    Hi, Elisabeth!!!

    And thanks! It's great to hear from you. I am feeling very positive about this move. It feels like the mold avoidance strategy is going to help me a lot.

    Thank you for the tips!

  20. tooks

    tooks Member

    Congratulations! And I bet you'll feel lighter having let go of so much. For me it was a hurricane--took everything. After a bit, I was glad that everything was new and decided to even re-create "my look." Especially after a good friend looked at my baggy T shirt and said, "You look terrible. Let's go shopping." And she knew how to do it and had me decked out in things I never would have considered. I am looking at it as a new me that is getting well and letting all the old stuff go.

    Again, congratulatons!