CFS: Forebearance's journal (AV Enzymes, Methylation, Mold 19)

Discussion in 'Fibromyalgia Main Forum' started by Forebearance, May 4, 2008.

  1. Forebearance

    Forebearance Member

    Wow, it's hard to believe that I'm in my 19th month of taking Virastop. But I can't seem to go without it.

    Right now I've been taking one capsule every four days or so. It's like a maintenance dose, I think.

    I'm still happily excreting on the simplified methylation protocol. It feels very supportive.

    I'm still preparing to move by the end of May. I'm going to try the extreme mold avoidance that has worked for several other people. That means putting my possessions in storage and starting over fresh, with all new stuff, in a new home.

    Some of my blood tests that will be used to diagnose mold poisoning have come back. Here are the results so far:

    Leptin 31.9 (normal is 4.1-25.0)

    VEGF 82 (normal is 31-86)

    C3A 196 (normal is <205)

    MMP-9 893 (normal is 0 - 983)

    Okay, so Leptin is a bit high.
    VEGF, C3A, and MMP-9 are high normal.

    It looks like I don't have that problem with low VEGF that Dr. Shoemaker talked about in "Mold Warriors".

    These results aren't too exciting yet. Three more tests are still needed for a complete picture. Two abnormal blood tests plus the BIRS over 50% equals mold poisoning. (and one of those abnormal blood tests needs to be the genetic susceptibility)

    [This Message was Edited on 05/04/2008]
  2. Slayadragon

    Slayadragon New Member

    Those are pretty close to the abnormal ranges.

    My experience with Guyer is that he always acts like the tests showing "almost abnormal" actually are abnormal. This is especially the case when they point to hormones (like HGH) that he thinks I would benefit from taking, but a lot of other tests too.

    It's too bad I don't have test scores of my own to compare yours to. It's very noble of Dr. G to insist on saving me money on tests (and he's probably right that knowing the levels wouldn't change my treatment plan), but it does make it hard to compare my situation with other people's on this board.

    I have an appointment scheduled this week with Dr. Tom Droth, described at the following site (at the end of this post). He's an M.D. surgeon who previously worked for the U.S. army and then in a surgical practice before deciding to ditch the system and become an N.D. so that he could do more "alternative" stuff.

    He and his wife specialize in "environmental medicine," which actually is what I seem to need at this point. It will be interesting to see if he knows anything about toxic mold, or toxic lyme, or methylation blocks, or anything else that I've found to be especially relevant to my situation. In any case, they seem really into vitamin IV's (including Vitamin C''s amazing how many people seem stuck on the overkill of Myer's Cocktails), which should be something.

    Actually, I now have four appointments with doctors who give IV therapy in the Chicago area next week. I had a heck of a time finding them, and so now I think I'm going to just go to see all of them. Being able to get an IV when I need one seems to be really crucial to me at the moment, and so the larger the choice available to me at any particular time, the better.

    I'll let you know if "Dr. Tom" suggests or is enthusiastic about the Shoemaker tests, anyway. He's an MD, so the insurance should pay if he suggests them.

    Note that the combination of Dr. Phil, Dr. Ruth and Dr. Laura used to make me think that "Dr. Amy" thing was totally credibility losing. Not that I'm not wholly approving of a little old German lady with a Ph.D. in education encouraging the use of vibrators, but she still seemed a little on the fringe side and the other two just seem off their rockers.

    "Dr. Tom" and "Dr. Amy" seem to do it because it's the naturopath convention, I now think. I still don't exactly approve and think that being referred to simply as "Yasko" gives Amy Yasko some useful dignity, but perhaps it's time to stop being annoyed by the whole thing.


    "Dr. Lisa"

    (and isn't that just ridiculous, btw???)
  3. Forebearance

    Forebearance Member

    Hi Dr. Lisa,


    That makes me think of TV personalities when doctors use their first names like that.

    Yes, it figures that Dr. Guyer would pay attention to lab results that are almost abnormal, because he has finesse. He's a good doctor.

    It should be interesting to see what my doctor says about them. If the other tests come back almost abnormal, it will paint a certain picture. -- of someone who is mildly poisoned or almost poisoned. This poisoning effect happens on a scale, after all.

    I will be impressed if Dr. Tom has even heard of Dr. Shoemaker or has read one of his books.

    I was thinking that, too, that finding a doctor who specializes in environmental illness might be the closest thing to a professional who would understand the mold issue.

    If you decide to get any of Dr. S's suggested tests, I hope you will chose to get the genetic one. Being able to compare genes might be helpful. It's probably expensive and not covered by insurance. I haven't gotten the bill yet.

    Good luck lining up your Vit C. IV providers!

  4. Forebearance

    Forebearance Member

    Oh, I just thought of something else! I wonder if being on the methylation supplements has an effect on the blood test results. Maybe I am being de-poisoned a little bit by methylating better.

  5. deliarose

    deliarose New Member

    Couldn't agree more .. the whole Dr Amy thing drives me nuts!

    In fact, there is a lot of things about the Yasko protocol and the woman that kind of exasperate me.. but I can't deny that she seems to be spot on..

    Even just looking at my genetics, she can tell what works and what won't for me. It's not that she's a genius.. She just has a lot of clinical experience with the protocol & she seems to be right about the science.

    Pls report back on your IV experiences. I'd love to hear how these folks compare.

    Does yr insurance cover these IVs by the way?

    Also on another thread, you expressed skepticism about the value/accuracy of viral IGG titers. I tend to agree with you.

    That said, what is your opinion now of your year on Famvir?

    Do you think it was helpful? Do you think it was helpful but too aggressive?


  6. Elisa

    Elisa Member

    Hi My Friend!

    Just want you to know I am thankful for your wisdom and very grateful for the kindness you always show me...what could be more healing than that!

    I am hoping and praying your new place brings you happiness and healthfulness!!! It sounds exciting to start anew!

    God Bless You Forebearance!

  7. busybusymom

    busybusymom New Member

    Hi Forebearance - I just posted on my thread about your labs! Didn't see this one! :)

    I had asked if it was your home that had the mold and now I can see it is. You are doing the right thing leaving everything behind. When I had to move out, I didn't bring ANYTHING w/me. I know that is why I got better - my labs proved it (6 months after moving out of the toxic house I had mold testing again to see if the levels had dropped).

    Never let anyone tell you that mold does not make you sick. I have had so many skeptical people, including my husband and his family, blame it on "anxiety and depression." What a bunch of idiots! It is hard to deal with people who don't believe you, but I try to let go of it.

    Can you tell me what Virastop is? Is is a detox pill?

  8. Forebearance

    Forebearance Member

    Thank you so much, Elisabeth! I really hope you will feel better and will find ways of helping yourself, without those dumb doctors.

    Thanks for the validation, Busy. Yes, the mold is in my living room, and probably in the living room wall. There's no visible mold right now, but it's probably around, and the poisons are around, I'm sure.

    I'm handling skeptical relatives so far by not telling them. lol If I get some good test results back that prove I've got mycotoxin poisoning, I might share a little bit more.

    My standard line is that I'm going to experiment and see if living in a place that's not a basement is better for me. People buy that. Plus, if I talk about toxic mold, people tend to think that my apartment building must be a dump, and it's not. It doesn't seem fair to my landlord to go telling everyone about it. I'm sure he'll fix it well enough for anyone (who doesn't have CFS) to live here.

    Virastop is an enzyme blend that is intended to kill viruses. It was created with the common cold in mind, but it turns out that it works on any and all viruses. People take it for shingles, mono, AIDS, you name it.

    It's not as strong as a prescription anti-viral, except maybe acyclovir. It agrees with me better than a prescription drug would. Viruses can't become resistant to it, so I can take very small doses that I can handle.


    Well, it's been a month since I gave the blood for my blood tests, so I called Lab Corp. They told me they sent the results to my doctor's office on April 18th. So I called up my doctor's office and shared this info with them.

    The head nurse is a dear person and a terrible liar. She gave me all kinds of bizarre, flimsy excuses. I realized that she was covering for someone. Then after I hung up, I realized by reading between the lines that the test results must have been sitting on the lab technician's desk for over two weeks. The same lab technician who I had to annoy to get the tests done.

    I guess she's getting her revenge on me. So I sent her a flowery thank you card, saying how much I appreciated her help with these unusual tests. I even put a kitten return address label on it, the ones I usually use for my nieces. Hopefully that will induce her to release the hostages.

    I had no idea that getting these tests done would be such a saga! I think I have some new gray hairs because of this. Because I was really hoping to have those tests back before I began moving out.

  9. busybusymom

    busybusymom New Member

    I posted on my other thread, but wanted to tell you to take hot baths - they will help detoxify your system of the mold because the heat opens your pores, expelling the toxins.

    I have had awful looking bumps mostly on my arms, but thigh, near my eyes, and hands as well. I literally have had 20 on my arm at a time - looked like a leper or something! They blister and break open, then leave a beautiful reminder of what was there (i'm being sarcastic here...). But to me it is also proof - there is SOMETHING in my body. These actually started before I moved out the house for over a year and a half. No doctor knew what they were until I saw the toxicologist because he sees them all the time! I thought I was being bit by bed bugs or spiders! But now they are back becuase I am back in this house where we recently found out we still have a problem!


    Hope all is well -


  10. Forebearance

    Forebearance Member

    Thank you again for the tip, BBmom!

    That sounds scary to have those sores on your arms. Wow.

    I am hanging in there. I'm feeling pretty awful, actually. Packing is hard work, and I'm exhausted. My sinuses are going crazy from all the dust I'm stirring up.

    I just hope I survive the next couple weeks and come out the other side.

  11. Forebearance

    Forebearance Member

    "I've gotta get out of this place...if it's the last thing that I ever do!"

    That song has been running through my head lately.

    Well, still no lab results in the mail. Now I'm wondering if maybe it is my doctor after all who is delaying things. She may be wanting to read enough of "Mold Warriors" to be able to write me a letter about the test results. In which case, who knows how long it will be! She's always short on time, and I've never asked this much of her before.

    I tried the silly herbal drink I got at the health fair a couple weeks ago. It's called Tunguska Blast. I was surprised to find that it made me feel better. It didn't make me Herx or detox or anything, just feel better. So that is nice.

    I think it's sold through MLM, though, which is too bad.

    It looks like my transition from moldy to mold-free is not going to be as neat and tidy as I would have liked. I was trying to plan things so that I could make the transition in one day and be mold-free from then on.

    But I'm running out of time and energy to copy all my important papers and wash things in the dishwasher and etc. So I will just do the best I can. Nobody else seems to have made the transition perfectly. It's such a huge job.

    And perfection is not necessary. It's just how my mind works! lol

    What I'll do is keep the contaminated stuff in my car trunk until I can deal with it. I won't bring it into my new, clean living space.

    I'm going to move from my apartment to a hotel room. I'll stay there a few nights, and do things like deal with my supplements, re-pot my houseplants, etc. Meanwhile, during the day I'll be going back to my apartment to clean it.

    I won't be living mold-free yet, so I won't expect to start feeling better.

    Then I'll move to a new temporary furnished apartment. I hope and pray that it won't have any toxic mold in it. At this point, I can't tell by walking into a place if it is moldy, the way some people can.

    It will probably take me a week or so to settle in and see how I'm feeling. Then I will begin doing either the cholestyramine or soluble fiber or phytosterols. One of those. And I purchased some Noni juice from the company recommended in "Mold: The War Within" to try.

    In the past, noni juice was a powerful laxative for me, so it should be a good antidote to the fiber and etc., which cause constipation.

    So I feel good about my strategy. Let's hope I can pull it off. I keep hiring more people to help me pack and move. It's going to take a village to get me out of here!

    [This Message was Edited on 05/13/2008]
  12. Slayadragon

    Slayadragon New Member

    That's interesting that you ordered the noni juice. Perhaps I will order some myself again. (I had to leave my supply from before in Florida when I came back.)

    As far as I could tell, the noni made muscles stiff. That was interesting, since pain has never been a big symptom for me. Cholestyramine does that too though.

    Cholestyramine is pretty potent stuff, I'm realizing. I generally get very tired and depressed and irritable after I take it.

    Maybe I should try that CholestePure from Pure Encapsulations as a change of pace. I actually have some.

    Dealing with "the stuff" certainly is a pain. Right after ozoning, my house felt good to me. Now it's becoming really awful.

    I'm not sure if that's because I'm kicking up lots of dust that didn't get hit by the ozone or if there's new mold growing. The latter would be very depressing since it would make me feel that remediation is pointless and that the responsible thing to do would be just to tear down the house.

    In a way, it would be easier just to take the financial hit than to fix it up and then try to sell it. (Not that selling it as a teardown would be immediate either.)

    Getting the stuff out seems to be the important first step. If it's cleaned out and HEPA filtered and ozoned and _then_ I start to get sick after a few weeks or months, I'll figure that it's beyond salvaging even if they can't find the mold.

    Having a conscience does have its drawbacks though.

    What happens to you when you stop taking ViraStop for a while?

    I don't know how I feel about re-potting plants. Wouldn't the poison mold be stuck to the leaves pretty thoroughly? With people (and with more trouble pets), you can take a thorough shower. External skin cells flake off pretty quickly.

    Hair is more problematic, and so I sort of agree with the idea of getting rid of it if you're planning to do a "clean-break" exodus. I went to a good hair stylist and explained the mold thing, asking her to cut it as short as she possibly could without it looking awful. It actually turned out really cute too. The only problem is that my hair grows really fast. (I actually think the main thing about short hair is that you can wash it easily, many times a day in bathroom sinks if necessary. This was Erik's comment, and I think he's right on it.)

    But with plants.....even if you wash them, it doesn't seem like it would be as thorough as you'd get in a shower with soap.

    Otherwise, it sounds like you have a good plan. Good luck to you!
  13. Forebearance

    Forebearance Member

    Hi Lisa,

    Thank you for reading my thread!

    I think if I do try cholestyramine, it will probably be only one or two crystals of it. I'd have to be really careful.

    Oh boy, I hope your house isn't growing new mold. It sounds plausible to me that it's just dust being stirred up that wasn't ozoned.

    I you wanted to see if it was clean enough to sell with a good conscience, you could do one of those vacuum cleaner tests Dr. Shoemaker talks about in his blog. I forget what they're called.

    Hopefully the final HEPA filtering and ozone treatments in an empty house will do the job.

    I'm so sorry, but I can't remember right now what happens to me when I stop taking Virastop. My brain is so full of moving details that everything else is pushed out.

    The house plants I was thinking of keeping because of a discussion I read on another message board. People there seemed to be generally thinking that they would be okay. I guess I'll find out, though.

    Groan. I haven't even considered cutting my hair short. That would be hard for me. Vanity strikes!

    I admit that I am really not looking forward to living the "mold avoidance" lifestyle. But on the other hand, it would be better than having CFS. And I know from reading things that the longer a person has mycotoxins circulating in her body, the greater her risk of cancer and heart disease. So those are good reasons for biting the bullet and doing it.

    It would be terrible to have my life shortened by some stupid poisonous mold!

    Thanks for the moral support.
  14. Forebearance

    Forebearance Member

    I have a few little updates.

    The herbal drink I've been trying kind of reminds me of Noni juice. It did give me diarrhea one day.

    My best guess is that it is a bit detoxifying, in the same way Noni juice is, and that it is a bit of an adrenal tonic. I seem to feel less wiped out when I take it. But then in the evening, I get slightly feverish.

    I'm glad I'm only taking a teaspoonful a day. I don't want to go into another big detox reaction right now.

    Yesterday I decided that the only way to get my test results out of my doctor's office was going to be to make an appointment to see my doctor face to face.

    Her soonest available appointment is in July. Sigh. I forgot how busy she is. Better late than never, though. By then I can talk to her about how my mold detoxing is going.

    Meanwhile, I'll keep checking the mail just in case they decide to send them to me.

  15. Forebearance

    Forebearance Member

    I received my C4a test results in the mail today.

    It was 5532. Normal is less than 2831. So mine seems to be very high.

    Hopefully my doctor's office will take pity on me and send me the other 2 test results before July.

  16. Forebearance

    Forebearance Member

    My neighbors and landlord are giving me a hard time about moving. They don't want me to go. I haven't told any of them about the toxic mold yet. I plan on only telling my landlord, so as not to freak out the neighbors. I think it's only my apartment and the laundry room that are affected.

    I have lived here for 11 years and I have loved this apartment. I'm feeling really sad about leaving. But I would also really like to have my brain back. And my eyesight.

    My apartment is so cozy, so comfortable, and feels so safe from a general, not mold, perspective. It feels like a lovely homey tomb. If I stayed here the rest of my life, I'd slowly turn into a zombie and then quietly die. By that point, people would have forgotten I exist, because I'd never get out of the house.

    I think that must be what mold poisoning feels like. It's a gradual process of zombification. The more poisoned you are, the less you feel like doing anything about it.

  17. Forebearance

    Forebearance Member

    Okay, I'm sleeping in my new, mold-free apartment now. It's damp and spider-y, though, which is not so great. I think it will be a temporary home while I look for something better.

    I still need to clean and pack some more at my old place. It's funny, but I dread going there now. And just a few days ago I was living there! Happily!

    Once the movers took the furniture away, I could see exactly what was going on in my living room. The dark spots I had seen underneath and behind the furniture were actually within a larger brown stain. It looks worse than I thought it was.

    And yet, it doesn't look that alarming. It's just a stain. If you didn't know it was toxic mold, you'd just think it was some old dried-up stain from long ago and was no big deal. That's what I thought for two years!!

    My transition is not going quite as perfectly as I had hoped. I did end up bringing in some poisoned items to this apartment, like my purse. I sorted through the contents this evening. And I salvaged the contents of some unopened bottles of supplements, dumping them into plastic bags for now and throwing away the bottles.

    After I handled all those old vitamin bottles, my hands felt a little bit itchy and irritated. Could I be becoming sensitized to mold poison already? wow.

    Well, wish me luck. My transition will continue until the end of the month.

  18. Slayadragon

    Slayadragon New Member

    It took me about 10 days of being away from my house before I started getting really sensitive. However, I didn't make a big concerted effort like you are doing all at once. I kept feeling like I was feeling better when I wasn't around my stuff, and so moved it all away from me (e.g. back into the car) gradually.

    After about 2 weeks, I was rooting around in my purse for something and got a pretty bad burn on my hand. It was super-red (far worse than any sunburn) and didn't fade for a week.

    Mold Warrior Rule: Sort through your purse before you start to become sensitized.

    Thanks for the update.
  19. Forebearance

    Forebearance Member

    Yeah, Lisa, I remember your purse experience.

    The way I have been doing this transition, I am getting away from my stuff before I can tell if it bothers me. So I'm going on faith instead of using my symptoms as a guide.

    I keep thinking: Is this going to work??? And I keep trusting that it will. I'm going to give it a good try, anyway.

    Hopefully I will be able to finish cleaning out my apartment before my sensitivity really kicks in.

  20. Forebearance

    Forebearance Member

    After working in my apartment all day today, my hands feel like they do after I have handled a cockroach trap -- itchy and prickly and irritated. I had a strong urge to wash them as soon as I got back to my new apt.

    I am so fried. I have used up all my available help, and the job is still not finished. I have to rest tomorrow (and watch Lost!). Then I'll attack it again on Friday and Saturday.

    Meanwhile I've been trying to sell my furniture on Craig's list, and it adds an extra layer of complication to my schedule. People want to come over and look at the furniture at various hours, and they want me to go measure it, and I question whether it's worth the effort. Argh!!!!

    Sorry for whining but tonight I am definitely having a pity party. This is hard. I feel so alone in this. My relatives who live nearby just don't understand how sick I am and how hard moving is for me. Or they don't care. Ignorance causes a lack of compassion.