CFS: My Life As a Mold Warrior, August 2008

Discussion in 'Fibromyalgia Main Forum' started by Slayadragon, Aug 16, 2008.

  1. Slayadragon

    Slayadragon New Member

    About eight months ago, I started to address poison mold in the environment by starting to aggressively avoid it and to get the remnants of previous exposures out of my body.

    I now believe that poison mold is at the root of my CFS. As a result of my efforts, I have gone from being in bed 22 hours a day to being nearly fully functional.

    I currently am at the point where I easily would be able to take on a full-time job of some sort.

    However, I am continuing to pursue detoxification in order to get what's left of the mold poison out of my body. Hopefully this will make me less sensitive to mold poison and give me better cognitive functioning.

    I currently am working on some writing projects and will start looking into doing some consulting projects soon.

    ("Before" I was a marketing professor and consultant.)

    My history:

    I got sick in 1996. After an initial period of low functioning, my health improved to about 60% for most of my illness. (Thank you, Dr. Dale Guyer!) I was able to work part-time and to be active for maybe 5-10 hours a day.

    (Active including such activities as going out to dinner or cooking.)

    I dropped to about 50% in 2006 and 20-30% in 2007.

    During 2007, I made a strong effort to improve my health. I used an antiviral for about six months, followed the methylation protocol for the latter part of the year, experimented with antibiotics and tried a large variety of supplements.

    Unfortunately, my health during this time kept getting worse.

    (As a side note, I have been extensively tested and before starting to address mold had what might be called "classic" CFS: extremely low NKC activity (4, normal >19) and fairly low counts, elevated Rnase-L and LMW Rnase-L, extremely high alpha interferon (measure of viral activity), high apoptosis, expected T-cell abnormalities, periodically high CMV and HHV6 titers, occasionally reactivated EBV, elevated chlamydia pneumoniae and/or mycoplasma levels, candida problems, POTS, expected endocrine disturbances, various food allergies, digestive system problems, flu-like onset, high die-off to an antiviral and doxy/minocin, extremely strong detox response to FolaPro as part of the methylation protocol, post-exertional malaise, agitated exhaustion relieved by Klonopin, problems breathing due to congestion deep in my lungs, mild chronic trigger-point pain, brain fog, problems with temperature regulation, excessive thirst and urinary frequency, extreme sensitivity to medications, sensitivity to various chemicsls, mild lymph node swelling. I have not had the IGeneX test, but my horrible die-off response to even a tiny amount (50 mg) of doxycycline or minocin suggested to my doctor and me that lyme might be an issue for me. I do not have many symptoms of the co-infections though.)

    Finally, in December 2007, I read a book called "Mold Warriors" by Ritchie Shoemaker, M.D.

    The information in the book sounded like it was a match for me, and I thus decided to look into the matter.

    I called a mold inspector to look at the house. He did air samples and did a visual inspection.

    Meanwhile, I decided to see how I would feel if I removed myself from the house and went to stay elsewhere.

    I felt somewhat better right away. My weirder symptoms (temperature dysregulation, lung problems, extreme thirst) resolved almost immediately.

    After a few weeks, I started to realize that the possessions that I had taken from the house made me feel worse when I was around them. Gradually I moved them out to my car.

    A few days after removing a lot of my possessions, I found that my heart beat very fast and that I became slightly nauseated whenever I got around any of them. Eventually this started to occur even when I was around clothing that I had washed.

    Finally I decided it was time to buy some new clothing. It was 10 degrees outside, and so I put on my winter coat. After driving for about 5 minutes, I had to pull the car over to the side of the road so that I could vomit repeatedly. (The next day I repeated my mission without the coat. Much better to be cold than sick, and anyway my temperature regulation was so much better that the cold didn’t bother me too much.)

    I continued to have rapid heartbeat, nausea and vague feelings of faintness when I was around any of my possessions from the house. At one point I rooted around in my purse to find something, and my hand burned and got very red. (It took a week for this to go away.)

    Note that I had _none_ of these symptoms prior to leaving my house. All I had were typical CFS symptoms.

    I thus decided to leave my house and possessions behind, so that I could see what would happen. The fact that my possessions were making me so sick made me strongly believe that I shouldn’t be around them. (I didn’t even try re-entering the house.)

    Over the next couple of months, my symptoms changed a lot. I still felt lethargic and had cognitive issues, but many of the others got better.

    On the other hand, I felt bad in different ways. My belief was that this was due to the mold poison remaining in my body making its way out. I experienced headaches, feelings of awfulness, bouts of vomiting, extremely messed-up and sometimes painful skin, large amounts of brown saliva, and other strange symptoms.

    These symptoms were exacerbated when I used cholestyramine (a prescription drug that Dr. Shoemaker recommends for detoxification) or brown seaweed (a supplement recommended for detoxification by Dr. Mary Beth Short-Ray, a D.O. specializing in mold poisoning). The addition of EFA’s (fish oil or flax oil) increased these symptoms, even though those had never had a negative effect on me before.

    As time went on, I became even more sensitive to the presence of poison mold. Visits to certain stores like Home Depot and Wal-Mart made me quite sick. I was okay around most items, but a few made me really sick. When I finally returned home from the two months away, the inside of my car made me really sick. (Fortunately, that problem went away after a good vacuuming.)

    Note that "regular" mold (such as that present in one locker room I visited) did not bother me. I only was bothered by the poison from toxic molds. On a number of occasions I would point out that I felt sick from poison mold in a particular space, and was told that indeed, a black mold had previously been found growing in the walls.

    The inspector’s report came back. He had noted a small amount of a bad mold (stachybotrys or “black mold”) on my laundry room wall but said that it wasn’t a problem since it wasn’t airborne. Other molds in my house were slightly elevated and required only slight remediation, he said.

    Note that I never had any indication prior to this that my house had a mold problem. It did not smell like mold nor was there ever any mold in sight. I had been introduced to the idea that mold might be associated with CFS a year before I moved out of the house, but rejected it as not being applicable to me.

    By the time I got the inspector’s report, I had become aware of the tendency of air samples to vastly underestimate poison mold problems. I also had made an effort to learn as much about remediation as possible, and hired a company that seemed to be consistent with my knowledge to do the work.

    Stachybotrys was found in the lower level of my split level house (underneath the fake paneling) and in the attic (under two layers of drywall). The remediators assured me that this wasn’t a big deal and that I should have no problems moving back into the house. They were disbelieving when I told them that I wouldn’t be able to do so.

    A few months after the remediation (safe removal of the active mold and ozoning to decrease the poison left on objects) and several months after moving out, I was able to go into the house on an occasional basis. I hired some people to help me remove the junk and to have a big “garage” sale. My belief is that the house will be perfectly safe for the vast majority of the population (99%+)....just not for me, if I want to remain well.

    My health has gradually improved since moving out. Some of this seems to be related to detoxification, since my sensitivity to objects that have been exposed to mold has decreased. Some seems to be related to my getting better at avoiding mold (moving into an apartment that seemed safe, not visiting stores that I found to be contaminated with it, keeping contaminated objects out of my living space). I also found high-dose intravenous Vitamin C to be helpful at decreasing my sensitivity to objects and the resulting “lethargy” from exposure to them.

    I do not anticipate that my sensitivity to mold ever will go away. I do have strong hope that my well-being will increase to 100% if I continue to avoid contaminated places and objects and further pursue detoxification (per Dr. Shoemaker’s recommendations). Hopefully my sensitivity to mold will go down too, though that seems to be taking time.

    I have continued to support methylation (with FolaPro, IntrinsiB12/Folate, hydroxycobalmin, phosphatidyl serine, ALA, glycine, manganese and molybdenum). This apparently does nothing to remove biotoxins such as mold poison from the body, but my hope is that getting out as many toxins of any kind as possible will help my functioning. It seems quite possible that it already has contributed to my improvements, though it is hard to tell for sure.

    Right now I am spending time in the mountains of Colorado. There is less poison mold in the town where I am staying than in Chicago, and my functioning has improved in accordance with that. Unless I am actively pushing detoxification or have unexpectedly been exposed to poison mold, my functioning here has been 90-100%.

    It was only 70-80% back in Chicago. While I suppose it would be possible for me to live here forever, I would prefer to be well and at the same time live wherever I wanted. Hopefully I will get to that point.

    The last thing to come “online” has been my brain. Since I’ve been in Colorado, it has started working as well.

    My hope is that my immune system will repair itself and then get rid of all the bugs on its own. Perhaps it already has done this. At some point I will get tested again, and also give antivirals/antibiotics a try to see if I still get die-off. I think such drugs have their place, but believe that for me prior to addressing the mold issue, they were wholly counterproductive.

    I am aware that my story sounds unbelievable. However, I would encourage anyone who thinks I didn’t have “real CFS” to read my 6,086 posts on this board. Most of them were written during 2007, as I desperately tried every other method that I could find in order to try to get well.

    I wouldn’t have chosen this method to get well. It’s really annoying. I’d much rather the answer came in a pill. Unfortunately, this treatment seems to be one that has shown particular promise getting people well and the only one that helped me very much. Several other people with documented “classic CFS” (all current or "kicked off" members of this board) have had experiences similar to mine in terms of both their process and improvements.

    Whether mold poisoning is a problem for all CFS sufferers, I don’t know. I do believe it was and is my underlying problem.

    I currently am working as part of a group of six “Mold Warriors” (again all current and former members of this board, all with documented CFS) on a short book designed to provide information about our experiences and observations with regard to this approach to CFS. We will be distributing this free of charge to anyone interested. I’m certainly not selling anything!

    I’ve not posted my progress on this board very much over the past eight months because I was afraid that it wasn’t going to last or that this approach wasn’t “for real.” It’s clear to me that it’s not a placebo effect at this point though.

    I thus will continue to post my progress as time goes on.

    Thanks much to my many friends here on the board. We went through a lot together during 2007, and your support and e-companionship was invaluable in getting me through that difficult time!

    Best, Lisa

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

    Slayadragon New Member

    Following is a short report of "where I'm at now."

    My concern over the past week has been my gall bladder. It seems that it is clogged up with a lot of mold poison (and possibly other toxins released as a result of using the methylation support), which is disturbing since I have been told that many patients who have mold poisoning “lose” their gall bladders. (This is the case with lyme patients too. Dr. Shoemaker believes that lyme makes a poison similar to mold, and that lyme patients who also have mold issues have an extremely hard time getting better.)

    I have found recently that doing anything whatsoever to loosen up my gall bladder has given me very powerful detox symptoms. Things that give me these symptoms include taking one capsule of fish oil per day or taking several tablespoons of a mixture of apple cider vinegar and olive oil. Coffee enemas make me a bit dizzy but do not seem to increase difficult detox symptoms.

    The detox symptoms include nasty headaches, feelings of ickiness, a lot of staring into space and a loss of energy and vitality. Fortunately, they resolve within a day if I cease pushing detox.

    Having to trade off some temporary well-being in the hope of long-term wellness is annoying. However, I had neither of these things before starting to address mold, and so I am trying very hard not to be too annoyed.
  3. jenbooks13

    jenbooks13 New Member

    An inspiring story. Thanks.
  4. bunnyfluff

    bunnyfluff Member

    My hat goes off to you!

    The "mold warriors", like the "lyme warriors" are frequently attacked by naysayers..... which I have found are also people that have been sick 20 yrs with no improvement.

    It takes a lot of courage to press on with mold remediation, just like lyme treatments. It says a lot about you a person to be willing to leave all of your things behind to get well.

    I wish you the best,
  5. mbofov

    mbofov Active Member

    You and Forebearance are amazing in your fight against mold. Mold warrior is an apt name indeed.

    Your gallbladder symptoms sound similar to when I did a liver detox about 5 years ago. It made me quite sick for about a month, but I was much better afterwards.

    One thing that really helped my gallbladder enormously (and which did not make me detox!) was AF Betafood by Standard Process. It thins the bile and it's just great stuff. It makes your liver and gallbladder and everything work better. And it was one of the few things I've taken which did not make feel worse. So you might want to google this. I did a post entitled "how AF Betafood can help save your gallbladder" a few years ago, which tells about it.

    Take care --

  6. zipk

    zipk New Member

    Hi Lisa:

    I have hda CFS for eight years now and wondered if it was mold exposure. I got sick in Seattle, then moved home to Chicago for three years, and just came back to Seattle for treatment for lyme.

    I've wondered if Seattle has "toxic" mold due to the weather here. Do you have thoughts on that? I've always wanted to live in Colorado. Where are you living there?

    Please let me know what you did to detox the mold (CSM and brown seaweed?) and what you are doing currently to continue the detox. Thanks much,

  7. Forebearance

    Forebearance Member

    Congratulations on the fantastic progress you've made in getting better, Lisa!!!!

    I am so happy for you!

    I know from personal experience that leaving all one's possessions behind is really strange and unsettling and upsetting. But if you have to, you have to. It just comes down to how much you want to get well.

    Thank you for the tip on the bile thinner, Mary. I may try that! It sounds good.

    I am so glad you got those blood tests, m0joey. You're leaving no stone unturned. I wish you every possible good luck in figuring out what is at the root of your CFS.

    Thank goodness you were being so careful when house shopping, Kina!

    Yeah, bunny, it takes courage to pursue a course of treatment when your doctor is not telling you to do it. I guess it takes initiative.

    From what I've read, it sounds like toxic mold exists in every state. Even the most pristine environment can have a building somewhere that has a water leak that doesn't get dried up right away.

    Are you going to stay in Colorado for the foreseeable future, Lisa? Can you do any of your consulting work from there?

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

    Slayadragon New Member

    Thanks, Jen. It’s been great to be in communication with you through this journey. Thanks much for all your suggestions and support.
  9. Slayadragon

    Slayadragon New Member

    I’m of the increasing belief that lyme and/or mold is at the root of a high percentage (conceivably all) cases of CFS. It thus seems to me extremely important for anyone with CFS to examine thoroughly whether each of these applies to their case.

    Accordingly, I myself will be going back to look more into whether lyme might be a mild problem for me as well soon.

    The doxy/minocin was catastrophic for me prior to my addressing mold, and so I’m glad to have decided not to continue it back then. I’m now at the point where I think I could tolerate those drugs, and thus think it’s time to revisit the lyme issue. Not resolving that problem if it exists would be detrimental in terms of getting to my goal of full wellness, I believe.

    It seems to me extremely important for people to talk about both lyme and mold on this board. In the words of one previous board member: “Certainly we should speak without rancor, but that does not mean we should not speak.”

    I’m glad that you are continuing to do so with regard to lyme.

  10. Slayadragon

    Slayadragon New Member

    Thanks for the info on AF Betafood, Mary. I would love to try anything that will help my gall bladder without giving me heavy detox symptoms, and will order some of this on Monday. I bumped that thread of yours to the top of the board for others to see.

    I’m glad to hear that your own gall bladder issues resolved. My doctor told me that gall bladder problems can take up to a year to address, which was rather discouraging. Hopefully mine will get a lot better within a time frame more like a month, as yours did.
  11. Slayadragon

    Slayadragon New Member

    Poison mold is prevalent in buildings across the U.S. Any building that has drywall (which is basically all buildings now) has the possibility of getting it, since toxic mold grows well in cellulose. Climate control systems with centralized ducts (such as those present in upscale hotels) are prone to getting it as well, since the mold grows on fibers and hairs in the ducts.

    Damp climates may be somewhat more likely to foster indoor toxic mold problems than drier ones. However, I spent several months in Florida and did not find that toxic mold to be a problem in a higher percentage of buildings than is the case in Chicago.

    I am currently staying in Telluride, which is at 9500 feet in the mountains. There are several factors here that allow me to avoid mold better than in Chicago. 1) The summers here are cool, and so most places do not have centralized air conditioning or duct systems. 2) A lot of the businesses here are in small old-fashioned buildings and have owners that repair any leaks in a timely fashion. 3) Believe it or not, poison mold exists in “plumes” outside. (These plumes result when big buildings with mold problems are torn down or when, as in New Orleans, cellulose building materials are left out in the open to rot.) In Colorado, air pressure high in the mountains or in valleys cause plumes to blow away, thus creating clear air in those spots. Unfortunately, these plumes settle in “basins” (surrounded by mountains) at lower altitudes in the state. That means I feel good as long as I stay up here in Telluride, but a lot worse if I try to drive down valley. Not being able to leave this lofty area is less than ideal, and so hopefully I can increase my choices either through more detoxification or more “advanced” avoidance.

    Even here in Telluride, toxic mold exists. This is especially the case in an area of the town with a lot of big modern buildings with centralized duct systems. I avoid that area like the plague.

    Another place that apparently is very good for avoiding toxic mold is in parts of the desert that are not populated. That could be good for a short-term break, but hardly is the solution for the rest of my life.

    Insofar as toxic mold is a problem for CFS’ers, this tends to be the pattern:

    The person lives or works in a location with a high toxic mold problem. (This may or may not be evidenced.)

    The person becomes sensitized to the toxic mold. CFS results.

    The person may leave that workplace or job. Unfortunately, sensitivity to poison mold has been established. Insofar as the person is around any toxic mold at all, improvements will not be noted.

    It is rare that CFS sufferers are not around any toxic mold at all. For one thing, many keep their possessions or clothing from the time that toxic mold was a problem. Unfortunately, it seems likely that if I’d kept that one winter coat of mine hanging in the bedroom, I’d never have experienced a lot of improvement. My system would have kept on perpetual “alert” and thus continued to burn itself out.

    Even if all the belongings from the previous workplace or residence are discarded one at a time, wellness may be unlikely to result. Small “hits” of mold from various places (such as short visits to shops with mold in them) may prevent the person’s system from settling down enough for the CFS symptoms to die down.

    Insofar as any poison mold is present in the person’s current home or workplace (if s/he is well enough to work), declining health may result. For instance, I am not sure that the mold problem in Forebearnce’s recent apartment (different than the one she got sick in) was severe enough that it would have given her CFS. However, it seems to have been bad enough to keep her sick (and declining) during the years while she was there. (This is just speculation though, since judging the extent of toxic mold problems is difficult with existing technology.)

    It thus is possible that in your case, a mild toxic mold problem in your home or the presence of mold on your possessions is keeping you sick.

    Based on our experiences, the only sure way for people to figure out whether they are being affected by toxic mold is to get totally away from the possibility of it for a few weeks. A subsequent re-introduction to the living space generally results in noticeable symptoms (often rather dramatic ones!) if indeed mold is a factor in the illness.

    Another way to consider whether toxic mold is a factor in the illness is to look at the C4a level that Joey comments on. This requires getting a doctor to order the lab tests though.

    It seems that detox usually only yield benefits for CFS patients when they have gotten away from the mold in their environments. Attempting detox prior to this doesn’t generally accomplish much.

    As is the case with most CFS treatments, this “protocol” has yet to be confirmed as helpful by conventional medicine. All we have is case reports. Thus far those cases are consistent enough both in the process by which improvements occur and the extent of the improvements to seem worth a look by CFS sufferers, I think.

    Obviously this is complicated. That’s why it seems really important to have a book on the topic, so that both patients and doctors can understand it better. Hopefully some thought will allow it to be clearer than I am here.

  12. Slayadragon

    Slayadragon New Member

    That’s really good that you had a sense of which houses had mold problems while you were looking, Kina.

    Have your symptoms gotten worse since you’ve moved in your house? People have speculated that for CFS patients, a move to a new space tends not to result in big improvements (except maybe in “weird” symptoms) unless scrupulous avoidance of all contaminated items also is successfully achieved. A continued drop down tends to suggest that active mold may be a problem.

    Whether this pattern applies to FM sufferers is so far unclear. It certainly is the case that poison mold sufferers have reported FM symptoms though.

    Thanks much for your encouragement!
  13. Slayadragon

    Slayadragon New Member

    Thanks much for your note. I’m glad that my story provides some encouragement in terms of CFS sufferers being able to make substantial improvements or move toward wellness.

    It seems that the main number for you to look at is the C4a one. An elevation on that one would seem to suggest that extremely high sensitivity is an issue and that an attempt to be really proactive in avoiding even small amounts of mold exposures may be helpful.

    I had a very bad VCS while I was living in my house. It gradually moved to normal over the couple of months after I left. I was detoxing with cholestyramine during this time, per Dr. Shoemaker’s protocol. (Perplexingly, my vision has dimmed dramatically since I’ve been in Colorado. This may be due to the altitude somehow amplifying the effects of the poisons remaining in my body. Perhaps at some point, Dr. Shoemaker or someone else will be able to provide an explanation for the mechanism by which this occurs.)

    Anyway, even as my VCS normalized, my sensitivity did not. I believe strongly that if I did not make an effort to avoid mold in a scrupulous manner, my health would decline rapidly even though my VCS would remain normal. (Forebearance’s VCS was normal before she left her recent apartment and belongings, but her C4a was highly elevated. And as her recent posts have suggested, her sensitivity was extremely high.)

    I’m really looking forward to seeing your test results. I will be getting those tests done myself soon.

    Did you do the HLA DR one, for determine your genetic susceptibility to different biotoxins? If so, what did it say?

    The comments I made to zipk would apply to California too, I think.

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

    Slayadragon New Member

    As always, thanks to my fellow Mold Warrior for your encouragement and support.

    I’m doing well enough in Colorado to be inclined to stay here for a while longer. I don’t view this as a long-term solution, if for no other reason than that my husband’s job is in Chicago.

    However, I think that it is easier for me to detox here where there is less mold. Hopefully this will allow me to make more improvements that will allow me to do better once I get back to Chicago.

    The longest I could stay would be until mid-November. This is an investment condo that we rent out for large amounts of money during ski season. I can’t afford to be here then and lose that income stream!!!

  15. jenbooks13

    jenbooks13 New Member

    Hi Lisa. I've thought alot about your story as you know and it turned my attention much more strongly to mold issues in my own life. I've known I was sensitive, even allergic to mold, for a long time but didn't realize until your story how it could impact my already compromised lyme-body.

    I do agree, lyme and mold together may account for a big proportion of the really bad CFS cases. Both have biotoxins that stress your system and if you don't have great genetics, you are screwed.

    Here is another thought: antibiotics are made from mold. Some reactions we have may not be dieoff from lyme and may not be side effects, but actual mold sensitivity. And also antibiotics increase our fungal growth in our body. This combination, for a mold sensitive person, may not be good.

    My final thought is: you are creating a manual for moldies. You point out how prevalent molds are because of drywall and construction. What can we do about that?

    Are there ways we can seal or ventilate our homes? Not everybody can just move without becoming homeless or destitute. It is just not an option for everybody. I know someone who is on SSDI with lyme and mold in her home, which by court order after an inheritance battle, she is allowed to live in until she dies, but her brother owns, and she cannot rent out or sell. She gets $860/month in SSDI. A wealthy friend just paid for her to remediate the mold in and under her home (aspergillus) which was extensive. She is so MCS after a year of abx for lyme (and only worse off) that she cant even sleep in her sister's yard in a tent because she is too MCS to use the house facilities. She is very ill and probably couldnt handle the strain of moving anyway.

    I have found improvement in my mold situation though obviously I would like to move, by isolating areas and ventilating. I've read that heat recovery ventilators (in winter) if retrofitted with high Merv filters, can also keep air circulating.

    I know mold is contributing to my illness even now, and yet, I can't move just now.

    I think we need to address the problem not just in terms of leaving a home, at least not immediately, some people really cannot do that. It can be a longer term plan but they do not have the financial wherewithal to do so. They may have families, jobs, it can be a very difficult situation. I know Erik basically says, leave live in your mobile vehicle get well but he's single and had the options.

    It would be nice if in your manual there were resources for 'green' remodelling without mold materials or toxic materials, and for advice on what to do to improve a situation if you can't move immediately. I don't know if this is possible but as you point out, its ignorance and bad construction and bad maintenance that led to a widespread problem.
  16. zipk

    zipk New Member

    Hi there,

    Thanks for responding to my message.

    I did become ill after working in a moldy building in downtown Seattle in 2000.

    I am much much better now, but still not well by any means. I sold everything I owned and have lived in many different places, as I was too ill to work and different family and friends have put me up for months/years at a time. So I can't really attribute my continued ill health to my old possessions or living in a moldy environment.

    I have taken the visual acuity test numerous times, both failing and passing. I am very interested to know more about the detox you are using. Is it just CSM and brown seaweed? Would you recommend the methylation protocol as well?

    THanks much,
  17. Slayadragon

    Slayadragon New Member

    Hi Jen,

    I’m becoming increasingly convinced that the toxins that come from candida living in the gut are not a whole lot different from poison mold toxins.

    I’ve always felt that keeping yeast at bay was the thing that helped me most throughout my illness. I wonder if my apparent inability to detoxify mold toxins is related to that.

    When I told Dr. Guyer about my stachybotrys problem, one of the things that he recommended was to be sure that I was proactively addressing any candida problem in my gut head one. (He has a high-dose probiotic with 18 strains that seems very effective for that, and there are other things that I do as well.)

    He says that he has seen this be important for mold poisoning victims. Perhaps this is because their heightened sensitivity as a result of the mold exposures makes them more reactive to the candida as well?

    (If he knows so many mold victims that he can figure this out though, I wish he’d brought up to me that my house could be a problem. However, he’s yet to see anyone practice avoidance to the extent that I am, much less to the extent that Erik is. He thus always has dismissed mold as one of the many factors that contribute to CFS, because patients get only a little better when they move out of their moldy homes or workplaces. He seemed really interested in Erik’s story and wanted to know more details though. That’s one reason that I want to write this “manual”: so that doctors can become more familiar with the concept really fast. I’m currently writing it in language appropriate for fourth graders, in small part because CFS sufferers don’t want to read something dense, but mostly because that’s the only way that doctors will get through it!)

    I wonder what kind of mold antibiotics are made from. Obviously not poison mold. Maybe a mold that’s a cousin to one of the poison molds, with enough similarity to provoke an allergy? That doesn’t seem to me to be _entirely_ impossible. I myself have an allergy to erythromycin-family drugs. My mother and sister have this allergy too, so I wouldn’t be surprised if it’s somehow connected to the mold susceptibility thing.

    The problem with asking questions about how those of us who are super-sensitive can live in homes that are contaminated with mold toxins (or that may have small amounts of growing mold in them) is that I’m not sure who would answer the question.

    Most remediators seem not to understand the idea of sensitivity and thus likely would provide solutions that are inappropriate for people at a high level of sensitivity.

    I have no idea how one would go about doing this. Your own solutions sound as good as any I’ve heard.

    I’ve been reading a lot at “another place” about “sick buildings”. I think you are a member. Anyway, there’s a guy on there named Carl who seems to know something about remediation and is aware of sensitivity issues. Do you think it’s worth my while to look at his posts?

    I don’t know how I feel about supplying CFS sufferers with suggestions about how to remain in a place that may or does have toxic mold. It would have been disastrous for me to go back to my house even post-remediation (and I think it was really well remediated!), but then again sleeping on the street wasn’t my only option.

    And while Erik did manage to recover from ill health at least as bad as the woman’s you mention “just” through extreme avoidance, he had a lot of practice with decontamination procedures from the military. Not to mention apparent understanding of engineering and construction. If he were to give classes in what he’s doing (and maybe he should), we all could use his approach. I think there are very few of us who would be able to do that successfully (especially with severe CFS!) without such tutoring though.

    It’s only through being _really_ extreme that he’s been able to go back to work and support himself, it seems. And my understanding is that after undertaking avoidance, he got worse for quite a while before getting better. (Even natural detox will do that to you.) And he had a chunk of money that he used to buy a mobile home to use as his base.

    So all things considered, I wouldn’t know what to say to that woman. It’s hard enough to do this stuff with some resources (financial and otherwise) at your disposal.

    The thing that I’m not sure about with you is just how sensitive you are to the mold and how bad the mold is.

    You also have a mold allergy, which confuses things a lot. Staying indefinitely in a home with non-toxic mold that gives you allergic symptoms is (as far as I can tell) a perfectly okay thing to do. Staying longer in a home with toxic mold is a dangerous idea, since for those who are sensitive the decreases in functioning possibly may never be reversed. I feel certain that if I’d left my house even a year earlier than I did, my sensitivity to mold would be much less and my options would be much greater. (Though nobody ever wants to leave until they get _really_desperate, of course. So maybe I wouldn’t have left either.)

    The thing that I would suggest to you is try the usual “mold drill”: find a place that you feel confident is low-mold and stay there for a couple of weeks, of course not bringing any belongings with you. (The desert would be ideal, but that’s a long way for you. A place that seems to you to give off “happy vibes” would be my second choice, since places that are mold-infested tend not to feel homey/happy even when they’re extremely nicely decorated.) Then go back to your current home and see how you feel. If you immediately get really sick, that’s a good sign to get out!

    (I am amazed at how strong Forebearance’s and Lisette’s reactions were when they did this, since there was no particular reason to think that their problems were mold-related. Khaly, Josh and I had the same thing happen to us. That makes me more convinced both that CFS is related to mold, and that this “drill” has considerable effectiveness to it.)

    Let me know if you have any more thoughts! I’m certainly open to all the good ideas I can get.

    Best, Lisa
  18. jenbooks13

    jenbooks13 New Member

    First of all, there are two great resources on sickbuildings: Carl Grimes and Jeffrey May.
    Also, Erik's military training is interesting.
    So how about a chapter interview with Carl, and another with Jeffrey? Just a Q&A.
    For instance, why/how ducting systems get mold, how to clean/avoid mold in them. Why/how window a/c's get mold how to clean/avoid mold in them. Why/how heat recovery ventilators get mold, how to retrofit them. Why/how basements get mold, how to fix and isolate their circulating air from the rest of the house.
    How to use a moisture tester to test for mold.
    Is relative humidity of walls and hygrometer a good idea?

    Another person to interview is Debra Dadd, queen of green, as she had her bathroom remediated because of mold discovered by a bau-biologie person.

    Maybe this is turning into a book with all these ideas, but lol, oh well...

    The other problem--if you don't have a lot of $ (me, especially with the obscene amount I spend on my health as it is) and you are in a rental, how do you even check for stachy? I haven't figured that one out. I only had visible mold on my grout and it was cladosporium (sp?), anyway, bleach alone takes care of that. I am still loathe to take apart the tiles and take a sample to see if stachy is behind (afraid of exposure, and wanting to just MOVE soon). I have NO IDEA where the current mold is in my 2nd bedroom and suspect the wall cavities. How am I supposed to test those? I don't have a right to start breaking into my walls. I'm a renter.

    So my situation is uncertain. Do I have toxic mold, or just "bad" mold (aspergillus for instance). Where is the mold coming from?

    Its a drag and in my case the window fans are helping but I clean the most horrible soot off them every few weeks so I'm not thrilled at what I'm breathing in. The pollution is not good longterm.

    I think you're right if one has poison mold, get out. Like Mary Beth Short got out of her stachy poisoned office. But she remediated her aspergillus home.

    So some can be remediated, right?
    A list of molds and which are truly poison and which are toxic and which are "merely" allergenic (which is still devastating to those who are very allergic) etc.

    Another issue I've discovered is, though I'm not sensitive to stores the way you are, I've found some products, I notice they come packaged and smell a bit like mold so were stored in moldy warehouses. Now I'm aware and on the rare occasion that happens I throw out the product right away. This included 50 homeopathic remedies I got from India--the whole box smelled moldy and the vials!

    There are many aspects.

    I'm like you--candida was for so long a major problem for me and molds. Obviously if I'm biologically/genetically hypersensitive to molds, I won't like them inside me either!

    [This Message was Edited on 08/17/2008]
  19. Forebearance

    Forebearance Member

    I need to clarify a couple things:

    The water leak in the laundry room next door to my apartment and the spot of toxic mold that grew on the carpet began about two years ago. I had been gradually improving in my CFS symptoms, but after that happened, my progress stopped.

    I hit a plateau. Then I started to decline in some ways, while taking the methylation supplements and the other supps I took made me improve in other ways.

    Before moving from my apartment, my VCS score was very abnormal. It indicated 99.99% likelihood that I had neurotoxin poisoning. I haven't re-tested since then.

    It certainly seems possible that the apartment where I got CFS had toxic mold in it. I had kept several pieces of furniture from that apartment, and they were all in my bedroom!

  20. Slayadragon

    Slayadragon New Member

    Hi Zip,

    I've not heard of a lot of things that are supposed to detoxify mold poison.

    Cholestyramine certainly seems to work. Whether it will help CFS sufferers to become a little less reactive so that they don't have to be quite as careful about avoidance, I'm not sure. I hope that's the case though.

    I've been taking some for the past few days, and this morning woke up banging my head against the pillow. Some mold-related dream. Shoemaker says that the "intensification reaction" with CSM makes cytokines increase. My head felt like a pinball machine lighting up.

    Shoemaker only talks about that in his books as related to lyme, and so perhaps I'm detoxing some of that as well as the mold. My doctor called in a prescription for Actos, and so perhaps I will try some of that soon. It's supposed to reduce the intensification reaction.

    Dr. Short-Ray is enthusiastic about the brown seaweed (Limu or Modifilan). I think that it detoxes something besides biotoxins though, since I get a lot of it through my kidneys. All things being equal, it seems good to detox anything. I want to make sure that I'm going after the mold though.

    Dr. Short-Ray also suggests a supplement called zeolite. I've not tried that yet.

    Have you used CSM? How has it been for you?

    Regarding the methylation: Rich van K assures me that this does nothing for biotoxins, and so for a while I wasn't sure if having pursued it would help me on this front. Now I've concluded that most toxins are stored in fat cells, and that there's a limited amount of space to store them before they start causing trouble.

    So maybe if we remove some of the other toxins from the body, the mycotoxins are more likely to stay tucked away? I don't like them in my body at all, but cholestyramine is slow going.

    All detox stuff is slow going though.

    I will say that it's weird how much detoxification CFS'ers seem to get no matter what kind of thing they try. Normal people never would get a reaction to activated folates like we do. My doctor gives large amounts of the stuff that's in FolaPro to other types of patients (such as Metabolic Syndrome X) all the time and never sees anything like that.

    So I think that maybe it's not mold per se, it's that our bodies are toxic waste dumps in general and the mold is the one of the most problematic ones. I wish I knew for sure though.

    I'm glad that you've improved since getting sick, anyway. If your VCS is abnormal on occasion, that would seem to me that you have the possibility of future improvements.

    Thanks for writing!

    Best, Lisa

    [This Message was Edited on 08/17/2008]