CFS: An Introduction to Toxic Mold

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by Slayadragon, Jul 10, 2008.

  1. Slayadragon

    Slayadragon New Member

    I think that part of the reason that more people with CFS have not looked into whether toxic mold might be a factor in their illness is because they have not had a good source of information about it.

    However, I just found a short and easy-to-read book about the topic that I think serves as an excellent introduction.

    The book is written by an osteopathic doctor who got sick from mold poisoning herself, as a result of exposure at her work and home.

    The author is Mary Beth Short-Ray, D.O. The title of the book is "Surviving Toxic Black Mold Syndrome."

    Dr. Short-Ray's web site is at http://www.toxic-black-mold-syndrome.com.

    Most of the info from the book is on the site. However, the book presents the info in a much easier to follow way. It thus seems to me worth buying.

    I am not associated with Dr. Short-Ray and do not sell any products related to CFS or mold.

    This is not an expensive book. Considering how much effort and money people spend on other treatments, buying and reading this book in order to consider the possibility that mold might be related to their illness seems a trivial investment.

    However, if there are folks here who honestly cannot afford the $16 plus postage for the book but want to find out about mold, please let me know.

    I will buy the book for you.

    I don't have huge amounts of money to throw around, but the possibility of helping someone to get well by spending this much feels like the morally right thing for me to do.



    P.S.

    There is one paragraph in this book that is just plain wrong.

    She writes: "Stachbotrys and chaetomium...cannot live off the humidity in the air and need a definite continuous source of water to live, such as a leaky roof or pipe. These molds live on cellulose, wallboard, paper, wood and cotton. And, as I have stated before, these molds are the most detrimental to human health."

    Actually, these molds need a lot of water in order for the dormant spores (like seeds) to grow into active mold (like plants).

    If they don't get 24-48 hours worth of water, they will not grow.

    However, once they start growing, they continue doing fine without any more water. A humidity of 60% or higher keeps them going (and spreading) just fine....including through the air ducts.

    Other than this one incorrect comment, the book seems extremely accurate in terms of current knowledge about mold.

    If I find anything else wrong with the book though, I will note it on this thread.

    <br>[<i>This Message was Edited on 07/10/2008</i>]
  2. Slayadragon

    Slayadragon New Member

    I should add one thing here that's not brought up in Dr. Short-Ray's book or Dr. Shoemaker's books.

    (Ritchie Shoemaker is a physician who most suggest is the leader when it comes to researching and understanding toxic mold.)

    Most people who get sick from toxic mold improve to normal merely by leaving the building with the mold and engaging in some detoxification treatments.

    At least, Dr. Shoemaker says this is the case. His web site suggests that he wants to get a small amount of research funding in order to get his extensive results replicated well enough to be published in top journals.

    However, he admits that there is a small subset of patients who do not get well even when they do these things. He suggests in "Mold Warriors" that these patients may be especially likely to be defined as having CFS.

    A number of classic CFS sufferers currently or formerly on this board have achieved substantial improvements in well-being or remission through very aggressive avoidance of mold, either in addition to detoxification treatments or instead of them.

    These include erikmoldwarrior (formerly of this board, profiled in the CFS chapter of "Mold Warriors"), khalyal, 545 (josh), and me. Forebearance (who moved away from her moldy dwelling a few weeks ago) is starting to get improvements as well.

    Aggressive avoidance of mold means putting aside ALL possessions that have been exposed to the moldy residence or workplace and not re-entering the dwelling. It also means avoiding places with hidden mold.

    Giving up one's possessions and figuring out what to do with one's home (especially if one owns it) is difficult. My take is that it's a lot easier than being sick forever though.

    Avoiding mold in other places is slightly challenging but does NOT mean that one needs to move to a tent in the desert and avoid all human contact for the rest of one's life.

    Eventually one learns to recognize places that contain toxic mold quite quickly.

    For instance, my pulse will increase immediately from about 80 to up to 155. My blood pressure will increase from about 105/70 to up to 155/95. I also feel spacey and nauseated, sometimes vomiting.

    To the extent that one's body begins to detox (either on its own or with the sorts of help mentioned in Dr. Short-Ray's and Dr. Shoemaker's books), sensitivity may go down a lot. Mine seems to be doing that, allowing me to be less super-careful about avoidance without getting sick.

    Very few homes contain any significant amount of toxic mold. Fancy hotels with no windows that open and centralized duct systems usually have a good amount, as do enclosed shopping malls. Office buildings with this design (including most doctors' offices!) often have some. Many schools and government buildings apparently have horrific amounts of mold, perhaps providing an explanation for why the government has not taken more aggressive action on this problem.

    Many items in stores like Wal-Mart have been exposed to mold at some point even if the stores themselves don't have mold growing. Home Depot is especially bad about this. Avoiding these stores unless necessary might be a good idea.

    The key seems to be having a home as a "safe refuge" for the body to recover from the mold "hits" that it gets during the day. This is the same strategy suggested by allergists....that the bedroom be as allergen-free as possible.

    Mold toxicity is not an allergy. However, one theory is that it is similar to a peanut allergy in terms of the hyperreactivity of the sufferer to even a small amount. If complement (the part of the immune system that is activated in anaphylactic reactions) is oversensitive to a particular substance, avoiding that substance becomes important.

    The difference here is that with an allergy, the body is misidentifying a benign substance as dangerous and then overreacting. With toxic mold, the body is correctly identifying a dangerous substance but then overreacting to it.

    Most mold sufferers' systems do not seem to have that hyperreactivity. It more seems that this might be a trait of CFS sufferers.

    In any case, all of the CFS sufferers from this board who have tried this aggressive avoidance approach have improved dramatically after just a few months. It will be interesting to see how much more improvement Forebearance gets, and whether this strategy also works for Lisette (who is planning to try it).

    I have encountered one fibromyalgia sufferer (not CFS) who did not benefit from aggressive mold avoidance. I am not as convinced that this is a mold-driven illness. (Some other type of toxin could be at its core though.) In any case, she looked carefully for mold in her home and did not find any.

    It is my observation that few if any CFS sufferers on this board have looked carefully for mold in their own homes. A dwelling can have no mold odor and no visually apparent mold growth and still have horrific amounts of toxic mold growing under the drywall/plaster or in other places.

    Assuming that mold is not a problem thus seems to me a mistake. (Some CFS sufferers may have gotten sick in previous homes or workplaces and then---without avoidance or detoxification---never recovered. Any sort of downward slide since moving into the current dwelling should serve as a strong hint that looking for mold there likely would be worthwhile though.)

    People planning to try mold avoidance may want to take a look at the following Web site. It was written by a physician who got horribly sick as a result of black mold poisoning and then recovered his health entirely as a result of avoidance. Note that this guy is EXTREMELY gung-ho about mold avoidance (if anything even more so than erikmoldwarrior). It is my belief that people who are hypersensitive to mold can get a lot better (if not entirely well) with less avoidance than he pursues. The thought that his lifestyle seems impossible should not dissuade anyone from pursuing this route therefore.

    http://www.stachy.5u.com/


    In short:

    1. Just because you've moved residences or jobs during your illness does not mean that mold is not an important factor in your CFS. You still may be affected by the mold on your possessions from the old place, by mold toxins you encounter unknowingly as you go through your day-to-day life, and mold toxins still in your body. Until these issues are addressed, getting well may be impossible.

    2. Toxic mold is known to decimate the immune system, and in particular the innate immune system (including Natural Killer Cells). The fact that CFS sufferers have many pathogens does not mean that mold is not a significant or causative factor.

    3. Of all the CFS treatments that I've seen, mold avoidance seems to have yielded the consistently best results in terms of improvements.

    4. I am becoming increasingly convinced that CFS sufferers are much more likely to have mold in their homes or offices than the general population. Doing a systematic test of this (perhaps a blind study in which I visit homes of CFS sufferers and healthy people and pick out the ones with the mold) would be interesting for confirmation of this.

    5. One can lead a normal life and still get much better (or even wholly better) through addressing mold. Certainly engaging in mold avoidance is a much more normal life than being horribly bedridden as a result of using Valcyte. I'm not even convinced it's more difficult (one one "starts over") than avoiding food allergens. (Eliminating gluten may be necessary for some mold patients though.)

    6. It is possible to test whether one is sensitive to mold (through lab tests and brief sojourns from one's "stuff") before making a decision to abandon everything.


    Obviously I'm rather passionate about this topic now. I'm not insisting that anybody for sure has toxic mold as a big problem or at the root of their problems. But for those of us who truly want to get well, I think it's worth investigating. Unlike taking untested drugs, this is not something that is going to cause physical harm. And the financial loss if one indeed does get well as a result is certainly worth it....at least, to those who value health more than physical possessions or wealth.

    I thus encourage everyone with even the slightest bit of interest to look into the topic.

    I will be happy to answer questions if folks have them.

    <br>[<i>This Message was Edited on 07/11/2008</i>]
  3. victoria

    victoria New Member

    I'm reposting here what I posted on my own thread about biofilms...

    I had my son take the VCS test last night. While the questionnaires obviously indicated he could have neurotoxins since he knows he has lyme, babesia, bartonella at the very least, he actually passed the actual 'visual contrast sensitivity' test.

    Weird because he does have cognitive difficulties, but maybe not perception difficulties - or can someone tell me how that would cross over anyway? Of course I packed Shoemaker's book and have no idea if it's going with us or not now, may've been put in storage.

    Anyway, that said, Shoemaker says there are about 5-10% false negatives, and so my son is going to try the treatment anyway.

    We're guessing because of his past 3 years of treatment for Lyme (CDC+ 2X) it could be a false positive. I reallllly wish I'd thought of testing him when he first was dx'd, but with all of that going on I never thought of it; and I don't think Shoemaker was talking about lyme and other tickborn infections back then. Interesting now how everyone is including lyme and associated tick infections!

    So he will start it after our big move, we're leaving tomorrow for Mexico for at least 6 months ............ but I'll be back on here in a week or so anyway as I'll still have internet (couldn't live without it) ......... and will report later on how he does with it.

    all the best,
    Victoria

    <br>[<i>This Message was Edited on 07/11/2008</i>]
  4. Slayadragon

    Slayadragon New Member

    Hi Grammy,

    Dr. S-R doesn't talk at all about lyme. Probably that's good, since it definitely would complicate the subject!

    Dr. Shoemaker talks a whole lot about lyme, but his books and videos are extremely hard to absorb. This is especially the case if you've got mold or lyme toxicity!

    Let me summarize really briefly what I think are his recommendations regarding lyme.

    1) Use an antibiotic to kill off at least some of the lyme. Getting every spirochete does not seem to be his goal. Rather, he seems to want to reduce the active population so that the total amount of toxins they're releasing goes down. He seems to think this should take maybe a month (definitely not years). A herx should be expected. I don't know how he feels about my own doctor's (Dr. Guyer's) strategy of using only enough antibiotic to give a mild herx and then ramping up as the body can tolerate it, though I personally think it's a good idea.

    2) Use cholestyramine to rid the body of the lyme toxins. (He states he has not observed bentonite clay, charcoal or chitosan being effective. I have not seen him mention seaweed, but he did say in one video that he's tried "everything we can find" because cholestyramine is so hard to take. This was in 2007 and so presumably he'd heard about the seaweed from Dr. S-R. I personally am not absolutely sure what the seaweed is detoxing, though it's certainly doing major detox on something! Perhaps I will get a better sense as time goes on.)

    3) Lyme patients usually (maybe always) get a big herx-like reaction when they take cholestyramine. He recommends a diabetes drug called Actos, which he claims makes this herx go away almost entirely.

    4) A lot of patients will need to avoid gluten if they are to get better. (This is the case for mold patients too.)

    5) He recommends a few things for "after that."


    Here are a couple of what I think are relevant things to consider.

    * Not everyone who has lyme in their body (and who gets a die-off reaction when using antibiotics to kill it off) is unable to eliminate lyme toxins. Part of the reason that I want to get the HLA DR genetic test is to find out whether my body is supposed to be able to eliminate them. Forebearance's test said that she could eliminate them. Hopefully I can get the blood drawn for the test next week.

    * Inability to eliminate lyme toxins and inability to eliminate mold toxins are independent from one another. I suspect that people with both of these problems may have a harder time getting well, but that doesn't seem to mean that they can't.

    * The big problem that I see with lyme is that it's a circular problem. Active lyme makes toxins. And more toxins cause harm to the immune system, making it easier for lyme to grow. If I had problems detoxifying lyme poison and didn't get and stay wholly better after the initial round, I might be inclined to alternate short courses of antibiotics (natural or prescription) with short courses of cholestyramine (or if it worked ongoing use of the seaweed). Some of the Lyme Literate MD's seem to take this approach, though I don't know how Dr. S feels about it. (More of the LLMD's seem to avoid using cholestyramine at all though, I think.)

    * Cholestyramine does not cause herx reactions for patients who just have mold poison as their problem. This seems to just be a lyme thing. If the cholestyramine does prompt a big herx, it seems that lyme should be suspected in addition to or instead of mold. (Note it seems to me that a herx is way different than a detox reaction. I am going to put a list of the symptoms I experience with each below.) I don't know if brown seaweed (like Limu) prompts herx reactions in lyme-toxic patients.

    * A natural alternative to Actos (to minimize the herx reaction from cholestyramine in lyme-toxic patients) is high-dose chlorella. Dr. S does not mention this, but some reports suggest that it has the same mechanism of action as Actos. High doses are used in part because (supposedly) they move any mercury in the body out. Low doses (supposedly) have the potential of just moving it around, which can be especially bad since it might move to the brain.

    * I have yet to see any of the lyme patients on this board or any of the other lyme boards follow Dr. S's approach. I don't know why. Perhaps eventually I will find out.

    I'm so glad to be talking about these things on the board! Thanks for your questions and comments on this and other threads.

    Best, Lisa


    P.S. I really envy you having grandkids. I wonder if I can adopt some myself.
  5. Slayadragon

    Slayadragon New Member

    Following is a list of symptoms that seem to (for me) be "herx" reactions vs. "detox" reactions.

    The herx reactions are standard ones that lyme patients tend to report when taking antibiotics.

    The detox reactions are mostly like having a very bad hangover, with a few other symptoms (mostly a feeling of brain swelling and "stuck-ness") thrown in.

    Dr. Shoemaker suggests that patients who are unable to detox lyme get the herx symptoms (and in a big-time way!) just from taking cholestyramine.

    My own detox symptoms are present for me regardless of what sort of detoxification I'm doing (including when I first was supporting methylation). I don't get the herx symptoms listed below just from cholestyramine, which suggests that perhaps my body can detox lyme poison on its own.

    Both the herx and the detox experiences make me feel bad (the herx is much worse!), but otherwise they seem quite different.

    This seems like being really nit-picky, but I think it becomes important when evaluating whether eliminating lyme toxins is an issue.

    Of course, the HLA DR genetic test (insofar as it is accurate) should provide this information too.

    Unfortunately, getting doctors to prescribe this test is a challenge. Hopefully that will change soon though.

    **

    Die-Off Symptoms (Antibiotics):

    Swollen Lymph Nodes
    Extreme Irritability/Rage
    Extreme Depression
    Cognitive Function Disappears
    Intense Sensitivity to Stimuli
    Total Intolerance of Stress
    Intense Fatigue
    Parched Lips
    Headaches
    Extreme Thirst
    Feverish Feelings
    Sweating
    Sleepiness
    Tendency to Curl Up in Ball
    Eye Symptoms (sparkles, “fireworks” explosions, floaters appear or darken)
    Mental Confusion
    Mild Hallucinations (objects moving)
    Muscle Stiffness
    Pushing Past It Makes Feel Much Worse (e.g. going out for even a little while)
    Extremely Low Stamina
    Disorientation
    Salty Taste
    Feel Very Physically Sick


    Detox Symptoms (Questram/Cholestyramine, especially when combined with high-dose fish or flax oil):

    Nausea
    Vomiting
    Feeling of Being Unable to Move (stung with tranquilizer dart)
    Thoughts Stuck in Place (lack of thoughts)
    Emotions Stuck in Place (lack of feeling)
    Feeling of Being in Coma
    Feelings of Detachment from Everything
    Muscle Stiffness
    Feeling of Brain Swelling
    Headaches
    Decreased Visual Contrast Sensitivity (everything gets dim)
    Reddened Irritated Skin
    Handwriting Deteriorates
    Increased Diarrhea
    Stools, Sweat Have Chemical Smell
    Detox Foot Patches Turn Very Dark (normally beige)
    Chemical/Mold Sensitivity Increases
    Difficulties Speaking/Listening/Reading
    Pushing Past Doesn’t Make Feel Tremendously Worse (e.g. going out for a while)
    Accomplish Nothing Even if Try
    Feel Faint
    Inability to Speak Coherently
    Feel Mentally Dysfunctional

    <br>[<i>This Message was Edited on 07/11/2008</i>]
  6. Khalyal

    Khalyal New Member

    And I completely back everything you say. My own experience has taken me from completely bedridden to fairly functional. This takes vigilence, but oh so worth it.

    The only thing I might add to this is that mold hits don't always just occur indoors. There are areas of certain towns that I just cannot go to. This potential may increase as more and more parts of the country are undergoing flood situations. Fema has been slow, dreadfully slow, in cleanup assistance, and buildings with water damage have been left to sit and rot. I can only imagine how toxic New Orleans must be.

    My point is that mold exudes toxic spores. The spores become airborne and contaminate not only your belongings indoors, but, should you come in contact with a mold plume outdoors, can cling to your clothes, hair, etc. It's important to start paying attention to your body's signals that you have had a contact. For me, it's shift in mood quickly followed by brain compression, then migraine, then neurological phenomenon. I have tried to train myself to evacuate at the brain compression stage.

    Khaly
    <br>[<i>This Message was Edited on 07/11/2008</i>]
  7. marti_zavala

    marti_zavala New Member

    Bookmarking to read later - skimmed it, looks helpful.

    gettin foggy
    Marti
  8. victoria

    victoria New Member

    my son (with chronic lyme) will be trying it once we get moved... so he should be on it by beginning of next week if he's recovered from our move to Mexico and ready to take it on... leaving in a few hours... will TTY'all later...
    Victoria
  9. jenbooks13

    jenbooks13 New Member

    Having lyme since 2000, and having spoken to Shoemaker that first summer, I can say that I don't know of too many lyme patients his approach has worked with. I think it does help some. However many lyme patients have more than one bug from coinfected ticks. In addition, lyme is slow-dividing. A month of antibiotics didn't do the trick for me early in lyme.
  10. desertlass

    desertlass New Member

    I am so glad you took the effort to assemble this all in a "primer" so to speak.

    I'm also glad to know about the Mary Short-Ray book, because I suspect that Moldwarriors would be too difficult for me at this point.

    Also, I need more info on the experience of it, and not so much on every scientific medical detail. If I have to leave a book behind, it doesn't seem as useful to tackle Moldwarriors just yet.

    The Short-Ray book sounds like the perfect thing for someone in my current situation.

    My lab guy recommended a book called "Carpet Monstere and Other Spores" by Nicholas Money. I have not looked at this yet. He says it covers what is known about stachybotriosis from the last five years.

    I would say that if they want to find out what is _knowable_ is to listen to a CFS sufferer who has this in their home. I am sure that the list of all the things that this stuff can do will go well beyond what happens to mice who are forced to inhale it.

    Speaking of books in general for mold people, my husband has a Kindle, and it seems like this could be a "must have" for a Moldwarrior, although the mold books are not on there, yet. But I just love it. It will take a while for their selection to widen, but it's happeing quickly.

    I'm not much of a "warrior" when it comes to archetypes. It will be interesting to see how my own strengths come to bear with all of this. Even storytellers and tricksters and shamans can get conscripted into battle.

    But I have no idea if mold or remediators or insurance agents are going to respond well to distracting and amusing stories or rambling tales designed to save myself, like Sheherezade in the Arabian Nights.

    Does mold itself have a sense of the mythic? Does it have a sense of humor? Does it have a sense of knowing one's place, humility, and that "timing is everything"?

    Somehow, I think not.

    Right now, I am in the category of the "mold challenged". The way I respond to this challenge will be something that will become visible to all, I imagine. I only hope that I can handle it with a modicum of grace, because emotionally, I feel be-wildered.

    I am in a no-man's land that most people don't even believe in, like when people didn't believe that FM or CFS were real, and probably just some patient scam for disability based on a few corrupt cases on some TV tabloid show.

    Well, somehow we've managed to change the minds of many doctors and healthy people on that front. Perhaps we can change the minds of many when it comes to the toxicity of stachybotrus, aspergillus and chaetomium mold.

    But the real question is.. will the mold change _its_ mind?

    Again, I think not.

    As soon as I remember a humorous or uplifting comment I'll post it. Right now, I'm fresh out. If someone has one for me, that would be great.

    Lisette
  11. Slayadragon

    Slayadragon New Member

    Hi Lisette,

    Oh, I certainly think that mold has a sense of the mythic.

    I am of the very strong belief that fairy tales like "Snow White," "Sleeping Beauty" and "Rip van Winkel" are inspired by people's experiences with mold.

    Think about the moldy old castle of "Sleeping Beauty." Or the primitive forest residences of the dwarfs or (I think) the place where Rip van Winkel lived during his sojourn.

    There seems to be something that is appealing about the idea of going into a long sleep (which in large part what having mold poisoning is like) and then waking up to a world that has changed.

    Why do you suppose that is? And why do those stories cut off at the waking up moment?

    They make it seem like coming back to life in a world that's totally different is easy and that a prince will be waiting. In my experience that's not been the case, though perhaps that's because I'm only half awake.

    Of course, contemporary times has brought us Anne Rice's erotic trilogy starting with "The Claiming of Sleeping Beauty," which has the prince taking Beauty from the castle and bringing her to another kingdom where she is subjected to all sorts of trials as she serves as a slave for erotic and other purposes. This sounds more realistic with regard to what waking up from a mold coma feels like to me, actually. Lots of loss of control and personal tests of endurance....with, perhaps, a sense of inner strength and peace (and a kingdom of one's own to run) coming only after a number of years and three whole volumes of rather tedious plot and just-bearable prose. At least, I hope I get to the inner strength and peace part eventually. Feeling like one is only 1/3 through Part 1 is rather disheartening.....though still not as bad as being in a coma back in the moldy old castle. The story suggests that Beauty is not wholly unhappy during her ordeal, and I am not at present either.

    For another story with a sense of the mythic, try the documentary "Grey Gardens." This is a cult film about Jackie Kennedy's aunt and cousin, who live in a mouldering old castle (okay, very large house) in South Hampton. I believe that they literally were victims of mold poisoning (all the clues seem to fit), though I'm hesitant to state this clearly to the Grey Gardens Yahoo group since they seem to like the mystique of why these ladies behaved as they did. If you don't talk about the mold though (this makes it seem like just a plain old boring illness), the story has a very strong sense of the mythic. Why is it that people get stuck in a never-never land? Why is it that society views anyone who doesn't participate in accepted ways as intolerable? What would happen if they tried to get out and function in the real world (and what happened to the cousin, Little Edie, when she finally did get out)?

    I'm rambling. Perhaps I will go back and comment on this when I have more time.

    On a pedestrian topic, the book that seems the most useful in learning about mold remediation is "Mold: The War Within" by Kurt and Lee Ann Billings. Their own experience of recovery (after Hurricane Katrina) is only moderately interesting, but the interviews with mold experts of all sorts in the back are quite useful. Definitely a must-read prior to hiring a mold remediator.

    More comments on your and other posts on this thread later.

    I will be interested to see what you come up with in terms of the mythic/storytelling aspect of all this.

    Best, Lisa

    <br>[<i>This Message was Edited on 07/12/2008</i>]
  12. redhummingbird

    redhummingbird New Member

    Thanks for posting this. It's so helpful. I think I need to examine the mold issue again. My doctor ruled it out but didn't do any sort of tests.

    My mind just went completely blank as it does often. I'm glad to know of a book that is easy to read and understand. I'm going to buy this one.

    Lisette-are you interested in jung? I couldn't help but notice your talk of archetypes, trickster, ect...
  13. mariepats

    mariepats New Member

    I would definately love to have this book, because both my husband and I are suffering from mold toxicity, auto-immune disorders, along with candida. We moved out of our house and have to give up all our personal belongings, except for clothings and a few other items that we were able to wash carefully with anti-fungal solutions.&lt;BR&gt;
    If you would be so grateful to send us the book, it would be a tremendous blessing. We are really suffering.
  14. Forebearance

    Forebearance Member

    Hi mariepats,&lt;BR&gt;
    &lt;BR&gt;
    I don't know if slayadragon still reads this board.&lt;BR&gt;
    I would suggest buying this book yourself.&lt;BR&gt;
    &lt;BR&gt;
    Forebearance