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Low cortisol but XMRV activated via mold and Lyme toxins

Discussion in 'XMRV Research and Replication Studies' started by SunnyGal, Apr 11, 2010.

  1. SunnyGal

    SunnyGal Senior Member

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    This is the first time I'm starting a thread, so please forgive me if I've posted it in the wrong place or if this has already been discussed somewhere else (I did a search but didn't find anything). Just let me know how to fix any errors I'm making and I will fix them. Thanks! :D

    So, I'm wondering if this could be an explanation for how some folks could have low cortisol levels (as so many with CFS have) but XMRV could still be activated. According to this:

    http://www.royalrife.com/mold_toxins.pdf

    mold and Lyme toxins cause the fat cells to make a material called NF-kappaB. And of course NF-kappaB is one of the things that activates XMRV.

    Then, apparently these toxins can cause leptin receptors to be blocked, which then causes the production of a chemical called MSH is blocked. And MSH controls pituitary hormone production and if MSH is low, there will be a loss of hormonal control which can cause cortisol to be low.

    If I have this scenario correct, then even though cortisol may be low, there is plenty of NF-kappaB around due to the mold and/or Lyme toxins which thus activates XMRV.

    Perhaps some of you with more working brain cells than I can check this out and see if I'm making any sense?? :Retro smile:

    What do you all think? Does it make sense?

    Thanks! Sunny
  2. Mark

    Mark Acting CEO

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    Thanks very much indeed for this SunnyGal! This is really helpful to me, I have lots of problems with mold and there are several things described in this paper that fit extremely well with my own experience and which I haven't been able to get confirmation of from GPs. I'd really like to hear a scientist's view on how this might relate to XMRV, so hopefully someone will turn up...meanwhile, sounds lke there are lots of tips in this file, and mention of a book maybe worth buying...
  3. Wayne

    Wayne Senior Member

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    Mold - Lyme - Low Cortisol

    Hi Mark,

    Thought I mention that an infrequent poster here, "Slayadragon", has achieved a remarkable degree of remission by living an "extreme mold avoidance" lifestyle. She is probably our "in resident expert", and could be a good resource for you if you would want to vigorously pursue a "mold education". She recently posted on this thread.

    SunnyGal, thanks for posting this. I haven't gotten around to checking out the article yet, but I feel I'm dealing with Lyme and mold toxins, plus have low cortisol (which I supplement with low-dose hydrocortisone). I want to put a lot more attention on all these issues when I have the energy. Thanks.

    Wayne
  4. acer2000

    acer2000 Senior Member

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    Yeah or maybe the proteins in XMRV also activate that mechanism - acting as a toxin and thus perpetuating the virus.
  5. SunnyGal

    SunnyGal Senior Member

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    Mark and Wayne, glad you both found this helpful. I'm currently dealing with mold toxin issues and some Lyme, and this article definitely explained a lot of things to me that really fit with my case.

    Interesting point, acer2000. I could well imagine that the proteins in XMRV could cause problems as well. It'll be interesting to see what research eventually shows on this.

    Sunny
  6. Mark

    Mark Acting CEO

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    Thanks everyone, this is getting interesting! Have I at last found my sub-cluster I wonder?

    The $64m dollar question then: does anybody else of us mold-sensitives feel a kind of itching/tingling/stabbing pains, and sensitive skin, plus sometimes burning pains, on contact with bedding, sofas, etc? Making proper sleep impossible? It would be nice, one day, to find somebody with that same symptom, I don't really think I've ever met anybody who suffers from "The Itching" yet...
  7. gracenote

    gracenote All shall be well . . .

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    Mark,

    I have sensitive skin that makes it very hard to get comfortable in bed, on the couch, in socks and clothes. Burning, irritating, annoying, etc. but not itching or stabbing. I depend on sleep meds to get me past the discomfort so I can fall asleep. It is worse sometimes, and not quite as bad at others. I don't know what makes it different.

    I have mold problems my doctor suggests that I move to the desert. I'm miserable right now because the clouds and rain are back. I've also been diagnosed and undiagnosed with Lyme.

    On some other threads, it has been mentioned that antivirals and antibacterials have helped some people with the burning skin. (I don't know where those posts are.)

    There is a lot of information on Shoemakers web site.

    http://www.biotoxin.info/home
  8. Mark

    Mark Acting CEO

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    :victory::victory::victory::victory::victory:

    It might sound silly that this is such a sudden revelation to find this identity - after all, mold toxins have been discussed elsewhere and there are lots of overlaps, and so far I have been concentrating on other things on this forum rather than on mold. But there are lots of crucial details in points made by the posters on this thread, and in the article cited, that I've been waiting to hear for 15 years. Gracenote your description of how it comes and goes mysteriously, and other points, are ringing the bells I've been waiting for. Diesel, Sunnygal, Wayne, again lots of bells are ringing. The main thing is the identity of the symptoms we experience when in contact with mold. I have never heard anyone describing that, and I've never had it validated anywhere. Hence I am very excited indeed about this!

    Can we form a subgroup or something? I think we need to discuss our symptomology together in depth. I know there's info out there and we can pool resources on that, but I prefer the approach of affinity groups of patients figuring things out together from first principles. And I think we may have an opportunity to define this symptomology as a subgroup.

    I have made enormous progress in dealing with mold/fungus sensitivity, especially in the last few months. Gracenote I think in the course of the last year I have (partially) answered, for me, the mysterious question of how/why it comes and goes. We probably all know about the seasonal factors of course, but there are a few other pieces in the puzzle and a couple of crucial steps I have taken which are quite bizarre and rather expensive which I'm guessing nobody else will have done.

    I won't have time, for a few hours at least, to get going on this sub-project properly, but I'm very keen to start work on exploring our symptoms together.

    Call goes out, then, to anybody else who experiences something like this: burning/itching/stabbing/sensitivity pains in contact with mold/fungus/clothes/beddding, making it difficult to sleep (and thus causing secondary CFS-like symptoms due to deep-sleep deprivation). Could anyone in a similar situation register that on this thread please, and also any thoughts on:

    - Whether you see this mold sensitivity as your primary symptom (I think it's the root of all my problems, having experienced what it's like when I'm fully mold-free for a long time)
    - How we might structure and operate a forum subgroup, and whether you think this is a good idea
    - other details of symptomology and history (I'd like us all to compare notes in detail, conduct surveys re: mold sensitivity, etc.)


    I'll be putting my mind to ways we can structure things in the next few days. Very much looking forward to hearing all your thoughts...

    Onward and upward! :D

    Mark
  9. Mark

    Mark Acting CEO

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    Environmental detox tips

    ETA: I will keep working on this post, and maybe move it to another thread, over the coming weeks, because this whole thread has opened up a lot for me and I have been meaning to write about this for a long time...instead of getting sucked into pointless, draining arguments...:Retro smile:

    Thanks very much for that Diesel. We must all get together and I feel very confident we can help each other a lot. There is a lot you can do about mold but it is quite hard. Since you have the brain fog now I feel very sympathetic, so I'll post some suggestions, I hope you will be able to read them soon and find something here that helps you. I know this is going to be a long, hard post to read, but I hope it will be worth it for some people. I'm really looking forward to hearing whether you think all this makes sense for you as well.

    Remember: this is just my experience, but I really hope this works for you too:

    ETA: I should mention that many of the ideas here are based on Dr Myhill's protocols and in particular the book 'Detoxify or Die' which I recommend. I took the ideas that seemed relevant to me. It's not possible to do everything, just do what you can, and keep trying things. Try all the cheap or free things first, of course!

    - You need to find a "safe haven". Somewhere you can sit, lie, be comfortable, where there is no itching. Then you can sleep, and then you can begin to recover. One really good night's sleep, and the brain fog can be over. But this is really hard to achieve.

    - All the time I am in contact with something that makes me itch/burn/tingle, I am getting worse. It's crucial to stop everything and keep changing everything you can until the itching/burning stops. Zero tolerance. All the time you are getting worse, you are going down a hole, deeper and deeper. When you are not itching/burning you are going very slowly uphill.

    - A Tai Chi master said: doing the Tai Chi is like laying down sheets of paper. Every day you lay an extra sheet of paper down. After some years, the pile of paper is high enough to make a difference. This is not easy!

    - The slightest bit of mold on my skin puts me into "sensitive mode". In that state, I itch all the time. If you are itching, or feeling bad, you have to drop everything and work at changing anything you can to get out of the itching state. In the itching state, you will just get worse and worse.

    - I think sleep meds are a very bad idea in the long run. They allow you to stay in contact with things that are making you worse - especially bad when you are sleeping and vulnerable. They take away the feedback you need to understand what is happening. They also have lots of other side-effects. I understand why the seem necessary, maybe sometimes they are essential in certain circumstances, but I really think that in the long term, they are a bad idea. You need enormous discipline to get out of the hole.

    - For about one or two years, my safe haven was to sleep completely naked on a semi-aniline (chemical free) leather sofa. Heating bills were enormous, the sofa was very expensive too. Yes, I sweated, and stuck to the sofa! I had to tune the heating exactly right. But any clothes on my skin made me itch too much to sleep. I still can't tolerate pillows or cushions.

    - lying in a bath might work. I find I am OK in a hot bath (many people are not). So I spend about an hour or two a day in a bath, which is great for reducing the itching.

    - If you have any fungal infections on your skin, nails, etc, you need to get them sorted out. Your doctor should be able to help with that, but it probably takes at least 6 months.

    - It is really, really hard to spot what it is on my skin that is causing the over-sensitivity reaction. The wrong pair of socks can make be very sensitive - but the itching from that is all over, not just on my feet, in fact maybe not on my feet at all. That discovery was crucial. I spent hours and hours every day changing clothes again and again, checking myself to see what was better, and I still have to keep buying new clothes. A new set every month. Cheap, though, these days. I found that actually the chemical problems with clothes aren't so crucial for me. You need to find cheap clothes that are OK for you; lots of experimenting needed. Even then, sometimes I buy a set of 5 pairs of socks and only 3 are wearable. It's tough. I block it out of my mind, accept it, and move on. Because I can do nothing else if I am going to get better.

    - It might be impossible to do everything above without first doing a full detox first, so you are desensitised enough to spot the triggers. I spent a year changing everything I could think of. Natural, healthy, organic diet. Far Infra Red Sauna was crucial I think (they are actually not too expensive: I recommend buying one: I think you sweat out the mold trapped inside your body, not just the toxins). I also took Dr Myhill's supplement regime in that year. I think it helped but I don't know for sure what made the difference because I did a lot of things. Avoiding things that make me itch has always seemed the most effective thing.

    - I also had to cut out lots of other things that I tested sensitive to (with Biolab UK): flame retardants, chemicals in cleaning products, most importantly washing powder (I use a washing ball).

    - I also tested (through Allergy UK) for my 'allergies/sensitivities'. That found the mold sensitivities, and lots of food sensitivities too. I cut everything out and I got a lot better; my gut problems improved a lot. Food sensitivities are probably important as well. These tests - of course - are not recognised by the authorities. Just Ignore Them! Learning to trust yourself, not them, is crucial for everyone. Just use them for the few things they are useful for, like anti-fungal meds and help with well-known secondary and tertiary symptoms.

    - I find fasting very helpful. Sometimes I eat almost nothing for a few days, and I always feel much better for it. I had a big swollen stomach, but when I got that down, things were much better. Wheat/gluten is very bad for me. If you have IBS symptoms too then experimenting with food is probably crucial.

    - Keeping a bit of a diary might be helpful. Not like a 'CBT/pacing' diary, but your personal record to see what works. It takes time though, so just try it occasionally.

    - If you are sensitive to environmental toxins in general, you need to stay in your 'safe haven' as much as possible. I work from home now, my employer was very helpful with this. I know I am very lucky. For a year or two, I rarely left the house.

    - CRUCIAL: Air Filter. Dehumidifier ideally. Attack all the mold and fungus in your home. Get somebody else to do it because doing it yourself, and dusting, will also make you ill, so you can never escape the trap. Also, make sure there is never condensation on the windows. Open them if there is, or mold will spread. I open the windows during the middle of the day, but early evening I close them because spores can get in. The air circulation I have is worse than most people would like, but for me, blocking out spores and environmental factors is more important.

    - I have found leather/silk lining to be a very good insulator. I sit on my leather jacket when I have to sit on a fabric chair. I expect mold doesn't stick to leather, or something.

    - You need to find help and support, it is almost impossible to do all this on your own. One thing I did was have a very open and honest conversation with my Dad, and I begged him to reserve a week to work with me. I phoned him every day for a week and updated him with my latest experience, and let him tell me what to do. I followed his instructions exactly. He gave me calm, common sense advice. It didn't work, of course. I bought new sheets (bedding) every day, bought a tumble drier, various suggestions. Every day that week I updated him with my progress, and did what he said. By the end of the week, I was quite a bit worse - but he was at his wit's end! But he finally understood my reality! Now he was ready to work with me and help me. I think people have to stand beside you, and you have to try out their ideas, and be open and honest, before they can really understand. Then you have the ally you need.


    All this is what I did, and I don't know which was irrelevant and which was crucial. I suspect you need to do nearly everything, but I also think by far the most crucial is avoiding skin contact with whatever it is that's causing this problem. I still don't know for sure if it is mold, or my own dead skin cells, or something else on my clothes. But after I wear something, or sleep in something, for 3 days, it becomes "infected" and after that it makes me sensitive. If I went on holiday (I don't) I would sleep in a different bed every night, and the ones that make me itch, I know straight away, and I would get the room changed, and keep trying until I found a bed I could bear.

    All the above is expensive, time-consuming, and very, very frustrating, of course. I think you need to be very dedicated to this sort of programme for it to work. However, this was just my own, personal path. Probably much of what I did was irrelevant. I think we can probably find a quicker and easier way, together. I really hope so. But for now, I just hope there is something in there that provides gradual relief and improvement.

    Listen to your body, notice when things are OK, notice when they get worse, and then change everything until things improve and work out what it was that caused a problem. Remember: our reality is crazy, not us! Your crazy ideas and intuitions - turns out they are right. Learn to trust them.

    And remember: that's all just my experience. I really hope it works for you, but of course you may have a completely different reality. Find your own path and see what works for you.

    :hug:

    Mark
  10. gracenote

    gracenote All shall be well . . .

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    I feel less worse when I don't have molds around, but I am far from better and know I wouldn't be well even if molds disappeared from the earth. My doctor's suggestion that I move to the dessert was to lower the stress on my body that my mold intolerance adds. But I have infectious issues (fungal, viral, retroviral) that also need attention.

    Mark, I'm glad you're finding some of the pieces for yourself. I hope there are others who can join you. At this time, I am not in a place to narrow my focus to this topic. The sun will be out to stay for awhile here in California, I will get a little reprieve from some of the molds and a little more energy, and I will continue to try to support my body in every possible way short of uprooting myself from my home.

    I am interested in what other's experience with this and will try to follow along whatever is reported on the forums.
  11. Lisette

    Lisette My daughter and I

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    Hi, Mark

    You can find anything you need to know about mold, mycotoxins, reactivity, sensitivity and avoidance by talking with Slayadragon on this forum. Erik Johnson of I&I is also on here, but he doesn't post very often, I don't think. Khaly Castle's blog "CFS Untied" is also very knowledgeable about mold. She used to have a discussion forum about mold, but that ended some time ago, and I don't really know if that is discussed as much.

    I know a bit myself, but am not a good source right now, because I will be quite busy in the upcoming months with other commitments. One thing about the desert-- if you do move to the desert, don't go to a big city, because you really won't be getting away from it. I live in Tucson, and I had a small mold contamination in my own home, that was hiding and growing behind the sink cabinet in my kitchen.

    I am better now, than when I was then, when the mold was present. I am fairly certain that mold was a big problem in my previous house (still in Tucson) because the roof was replaced right before we moved in. I imagine that in the space of time that it was leaky that the mold began and spread. We did move some things from that house, like our laundry machines, to our current house.

    You might want to consider that you have a moldy laundry area, dryer vent or machines contributing to your fabric sensitivity. And of course everyone gets mold spores (tiny, invisible) on them as they go about outside and through various buildings.

    The important thing to address is not all mold, but the worst kinds-- avoiding these may actually cause you to decrease your reactivity to the regular molds that have been around forever. Some people have also noticed some of their food and chemical sensitivities lessening as the immune system stops getting so "freaked out" by the neurotoxic molds. i believe that Slayadragon has had a little bit easier time handling different protocols and meds as a result of lowering her reactivity.

    So, again, moving to the desert is not the solution unless you can find an area that is away from clusterings of buildings and isn't near flood plains. This is why it is hard to do, because living in civilization obviously has its perks. I don't have any scientific background, and certainly am not an expert on mold. However, because it came into my life, I had to deal with it in all its complexity. I believe that the really toxic mold can flourish in the dry desert climate because it doesn't have as many regular mold competitors to keep it at bay. Sort of like yeast in the gut-- a little is normal, but when the other bugs die, it gets dominant and problematic. Also, I have seen the invasion of a type of prairie grass called "buffel" grass take over areas that had no grass of any kind before. They are threatening all sorts of other plant life, including the saguaro cactus. I think something of the same sort is happening with the black mold.

    I will be moving to Seattle soon, and leaving most of my stuff behind. It takes some time for items that have been exposed to mycotoxins to decontaminate, so it is possible to store them and reclaim them someday, so don't anyone go throwing out valuables if you happen to be reading this thread.

    Speaking of threads, fabric acts like an air filter, as you probably know, so it's no wonder you have been having so many contact problems. You might be also sensitive to regular molds, even if it doesn't turn out that you have an actual allergy to them. You have already found what can help you-- getting that sleeping environment as pure as possible to breathe in. i have found that my own perspiration can be toxic if it is in detox mode, so I have to go to a lot of trouble with bedding and pjs and changing what I wear after I've been out and about.

    But all of that is covered by other people much better at this than I am. I'm sort of always caught up in the lives of my family, so I'm a slow learner when it comes to all the medical/scientific stuff and even slower when it comes to the application.

    Seattle sounds like the opposite of a good climate, but we are going to live as close to the shoreline as possible. It's pretty expensive there, to put it mildly. But as I understand it, the ocean air can be as salubrious due to lots of reasons that may or may not be the case, based on my faulty memory about all of this. At any rate, I think I have developed a little bit of sensitivity to a moldy house, and we are going to be renters until the housing market bubble there comes down a little. I hope I will be able to adjust to my new life, but the change is almost miniscule compared to what other people have done to regain their health and vitality.

    Good luck to you.
    Lisette
    P.S. I think Gracenote and others on this thread have also given you good directions for information.

    ETA: When I say 'I am better now" I don't mean that I no longer have M.E. I am still quite sick, but not feeling as "deathly" as I did. We also had the carpeting removed and new laundry machines installed, along with more regular maintenance of the ventilation system. But I don't think that any of these measures can do more than bump up someone from deathly to somewhat badly ill. But I press on to get bumped up a little higher, like your tai chi sheet of paper idea. And fittingly, "sheets" become a big deal with this problem, so it's a great visual.
  12. Lisette

    Lisette My daughter and I

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    I forgot to mention that I came across a guy's blog that I think is/was called "The Mold Missionary". His doctor has passed away, I believe. He lives in Alaska now, or at least did at the the time I was reading it. Erik Johnson is familiar with that doctor, too, I think. There might be a yahoo group that talks about living locations, but I don't remember the name of it.

    I just want to warn you, that sometimes mold threads can become very contentious, like anything else related to... well just about anything people decide to talk about lately.
  13. Mark

    Mark Acting CEO

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    Hi Lisette. Thanks to you, and again to everyone sharing experiences and links. I will definitely do more work absorbing and collating this information and post more later on the subject, on this and other threads. Lots of thoughts about Lisette's post:

    I think mold is the most obvious candidate to explain a large proportion of 'sick building syndrome' cases, and I think the damaging effects of mold to human health are vastly underplayed and very poorly understood. Even all the knowledge available is only scratching the surface of understanding a world containing a vast quantity of mycotoxic organisms that were recently found to be capable of interbreeding with each other to create new strains. The involvement of molds, behaving in vastly different ways, may be sufficient to explain all of my condition, even if retroviral contamination weakened my immune system's response first. More powerful molds than the ones I have been exposed to may have had different results in others, less amenable to treatment. Almost anything is possible in this area. I learned recently that there are only 4 mycobiology experts in the UK, all nearing retirement. We know next to nothing about this crucial area.

    I think I sorted the laundry issues out almost completely about 6 months ago. I have had problems in this area but I have new strategies that are even more effective than the previous methods. I clean the washing machine on an empty cycle with lemon juice regularly, run short quick washes, tumble dry rather than drip-drying, and store and categorise clothing carefully. When things go wrong, I buy fresh clothes straight away. And still, as per your comment about outside, I don't go out ever so much, though more now than I used to.


    I absolutely echo all of this. I am fairly sure I have been exposed to unusually harmful molds, possibly overseas or from overseas, and eliminating them still leaves all the regular molds, but my sensitivity was reduced after I attacked the worst affected areas. Air filtration made a huge difference. I have also noticed by food and chemical sensitivities lessening recently and put this down to the reduced mold exposure.

    I'll buy all of that. We should not assume anything about what mold can and cannot do. In theory it should all be destroyed by freezing but I have tried this without much success. Some species may survive or lie dormant in currently unknown ways. And the mold is evolving fast...One of the big problems is that the mold cell biology is very similar to human cells, making it easy for the mold to exploit parasitic relationships and difficult to engineer anti-mold measures that are not also harmful to humans. It is a very difficult problem.

    That's encouraging news! I wear a scruffy set of clothes because everything else is "contaminated" but I have stored my good clothes in hope of being able to wear them again some day. I have noticed some clothes appearing to improve when left for a long time, but also I have returned to old clothes and triggered major relapses a few times (until I realised the pattern) so I will need more evidence and counter-measures before I risk trying that again.

    I'm not quite sure I understand this point, but when I sit on fabric chairs and sofas, the reaction I get passes through any clothes I am wearing - except for the leather jacket I use as insulation. If you are saying that the fungal spores are getting trapped in the fabric and I then feel that against my skin, that would be a really interesting theory and one that I had suspected. I also think it feels more like I am somehow periodically "sweating out" something toxic to me, maybe mold, onto my clothes. 3 separate wearings of anything and it starts to become "contaminated".

    Ah yes, reading on, you did make that point about perspiration. Yes, exactly that. It's a real pain, I have to manage it constantly and it's very tedious, time-consuming and frustrating. Pure sleeping environment is absolutely critical - I would say the most important thing. In blood tests, I have tested negative for mold allergy by the NHS, and positive for mold allergy by Allergy UK (detailing the environmental sensitivities I had already determined myself, and a few others). Guess who I believe? Durrr....

    Excellent tip. I have heard that fresh, high altitude, cool mountain air can be positive as well. I'm not certainf the exact ideal environment there. I've heard some lucky people have two homes and switch during the mold seasons. Both my future seaside home and my mountainside retreat sound like lovely ideas to dream of...:Retro smile:

    AAARRRGGH! Don't get me started on sheets! I have a garagefull of them! If I ever find a way to definitively decontaminated "infected" items, I will be like Imelda Marcos only with sheets and duvets! I daren't give them away to anyone for fear this may be harmful to others.

    "No more than deathly to somewhat ill".
    Yes I'd agree. I can now go out once a twice a week, walk fairly briskly for short periods, eat a wider range of foods - in moderation - than before, and function well from my 24-7 safe haven tech centre and bedroom here in Sofa. :sofa: I have adjusted my life circumstances, limited my ambitions, and abandoned all my hopes and dreams for my life (other than to one day have a garden to sit in). I have done that so completely that I often forget that my life of inactivity and constant environmental management is unusual. I have come to terms with it so well that I nowadays tend to think of myself as 90% well even though half an hour on a cinema seat would have me in agony were it not for my insulating jacket. I have forgotten this is unusual; I live with it. But I would like to know more, and push on through, and investigate the science in the hope that one day, maybe, I can become like a normal person again. It would be too late for me to do all the things lads do from 25-40, but it would be better than nothing. And hope is a good thing to have...

    One final and crucial point. It has taken me 15 years of struggle and confusion to reach a point where I can look back and say "you know what, there's no solid evidence that there was ever any other problem than the goddamn fungus and mold. The whole thing with me could have been mold". I did not believe that, even just 2 years ago when I thought I had cleared the mold but still had a permanent head cold, chemical sensitivities, and recurrences of fatigue and brain fog. It was only when I cracked the last few issues of contamination of clothes that I began to conclude that mold may be the only thing - for me - that I needed to address, and that it takes a very long time to gradually clear out and fight back against the constantly re-emerging enemy.

    So whilst I expect it is probably true that Gracenote and others, who know their circumstances better than I, cannot address their problems purely through mold control measures, and may likely have many other sensitivities that would continue in the complete absence of mold - nevertheless: in my experience, mold - I think - turned out to be the primary sensitivity and once I'd cracked it, the rest of the sensitivities followed suit. I attacked and attack those other sensitivities too, and I may have been lucky that my task was easier than that of others, and that I had more resources available to me than many people have. But I still can't dismiss the possibility that others on this forum might be able to achieve more by attacking mold than they imagine.

    It does look to me as though the large subset of severely-affected people who have persistent multiple viral infections probably need to address things at an anti-viral and even anti-retroviral level as well. But even there, I'm aware that I have the version in which I "never catch colds" rather than the one in which people "always catch colds" and the fact that these are polar opposites seems suspicious to me that they may both be caused by the same underlying phenomenon: either XMRV or different manifestations of different fungal/mold infections/infestations, or perhaps both XMRV and mold are involved. I just want to hold up my experience-based opinion that mold could be far more significant for many people than they realise, even when they think they have it under control.

    I hope all this is helpful and I don't get sued for making dangerous recommendations and practicing CBT. :worried: :D

    Cheers all, I'll post back here again soon,

    Mark
  14. Mark

    Mark Acting CEO

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    Sofa, UK
    [Groans and rolls eyes]

    What the heck is there to get heated about in a mold thread?! Please forewarn me of any politically incorrect views I may blurt out concerning the politics of mold! I don't want to cause offence to seasoned mold hacks!

    Maybe change the subject then. Nicer weather we're having lately, eh?...
  15. SunnyGal

    SunnyGal Senior Member

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    Sorry I posted and kind of disappeared for a few days. Family came into town and that's been taking all of my energy and time. The good news, though, is that I've been treating for mold the last two weeks and having family come visit hasn't sent me into a major crash!! Well, not yet at least. They're here for a few more days. :Retro wink: But, I do think that treating for mold toxins is making a HUGE, HUGE difference for me.

    Mark, I don't have any of those symptoms you talked about. My mold toxicity symptoms were primarily very foggy, toxic-feeling head, fatigue, pasty (kind of like clay) look to my face, dark circles under my eyes, and my doctor pointed out not having any sparkle in my eyes (said it was a classic mold look).

    My feeling, as to how mold relates to my illness, is that I've had XMRV nearly all (if not all) of my life, and that mold toxins have helped to activate XMRV at times. I have the genotype of not dealing with Lyme toxins correctly but I fortunately don't have the genotype for not dealing with mold toxins correctly. So, I think most of my life exposure to mold wasn't activating XMRV too much (stress has been a much bigger trigger for me). But, recently mold has become an issue because my body's detox pathways are way over burdened (due to treatment) and then I exposed myself to a bunch of mold (cleaning a moldy room in my house, stupid me). That sent me downhill pretty quick, but fortunately my doc caught it and started me on CSM which is helping me turn around again.

    It seems useful to know if you have the mold genotype as well as XMRV to hopefully get a slightly better picture of your illness.

    Sunny
  16. gracenote

    gracenote All shall be well . . .

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    Santa Rosa, CA
    SunnyGal,

    I'm assuming you're working with Shoemaker's protocol?

    I have both the post-Lyme and mold HLA typing. I took cholestyramine (CSM) for a while and it felt like it was pulling stuff out of my brain. It did clear up some of my cognitive glitches. Have you done Shoemaker's visual contrast sensitivity (VCS) test, and did it show problems with neurotoxins?

    I feel like there are so many, many different types of things going on in my body, it's hard for me to know what to work on. My last VCS test wasn't so bad, so I've kind of let the mold angle go for now and have been working on viral and gut issues. I had thought of going back on CSM again; I just might try that. I do know that as the weather gets a little better, some of my symptoms will go away on their own.

    I think you're right, Mark, that really getting on top of the mold would help, but I have such limited energy and funds that it becomes overwhelming.
  17. SunnyGal

    SunnyGal Senior Member

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    Hi Gracenote,

    Yes, Shoemaker's protocol. I did the VCS test and it showed a problem with one eye and the other was questionable. We didn't treat at that time because I was not reacting to mold at the time (infections and food sensitivities were a massive problem for me at the time so we tackled that). I didn't bother doing the test again this time because it was so obvious that I was having a bit mold toxin issue. Just went straight onto CSM and with the first dose my head started to clear. I've now been on it for 2 weeks and my fatigue is much, much better as well.

    It is hard to know what's what and what you need to address when. That's a big piece of why this illness is so difficult to recover from.

    Do you all know about Thieves oil to kill off mold in your house? I've started using it but need to buy a cold diffuser still. Watch out, though, as Thieves can cause a wicked herx when you first use it!!

    Sunny
  18. Mark

    Mark Acting CEO

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    Hi everyone! Just posting to say I'll be (mostly) away from the forum for a couple of days, but I'll be returning to this mold topic and following up on all your posts in due course. I'll want to organise some polls, a group, organise the threads and info, etc. Already there are some intriguing similarities and differences in what people have described, and I think this might be a good starting point in starting to tease out those 'subgroups' of ME/CFS, which several of us are interested in as a long term project...

    Anybody else with sensitivity to mold as a major or primary symptom, please do post here with your experience, and I'll get back to you when I have some time...
  19. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    I recently had my Cortisol checked and it it low, so my Dr prescribed Cortef.

    FYI

    PS Still have not seen him face to face, so not sure what else will change but I have been on 25mg of DHEA for over a year now!
  20. slayadragon

    slayadragon Senior Member

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    twitpic.com/photos/SlayaDragon
    Hi All,

    So great to find this thread here!

    Mark, I’m really impressed with how you approached figuring out how to deal with the mold.

    Lisette, all your comments are right on target, of course.

    SunnyGal, I am guessing that you’re talking about this quote (or another similar one) from Judy Mikovits:


    > Q: If XMRV is present but inactive, are there any suggestion as to what could be a trigger for (re)-activation?
    >
    > A: Estrogens, Androgens, Cortisol (stress) and inflammation.


    Satratoxins (toxins made by Stachybotrys or “black mold”) are particularly good at creating inflammation and oxidative stress.

    Considering how much of a problem oxidative stress is in this illness in general, looking at mold as a possible contributing factor (if not necessarily “a cause” or “the cause”) seems like a reasonable thing for researchers to be doing.

    Erik Johnson, my “mentor,” is an original prototype from the Incline Village cohort and thus was part of the group analyzed by Dr. Mikovits for the XMRV work.

    Even before coming down with the “Yuppie Flu,” Erik knew that toxic mold was having a big impact on him. That “Flu” just made it a whole lot worse.

    Eventually, solely by working on getting his mold exposures way way down (a difficult endeavor!), Erik achieved remission. He has remained well since 1999.

    Several others of us who have followed Erik’s approach also have obtained remission or vast improvements. It’s hard to imagine that just mold avoidance can make so much of a difference!

    But I think it’s also true that it can’t “just” be the mold (even if it’s some turbo-charged strain) that’s doing this to me. Especially since Erik says that his own mold reactivity got hugely and permanently worse from the day he came down with that “Flu,” I think there’s some kind of pathogen interaction going on.

    If someday, someone could make the bugs go away, that would be great. Mold avoidance is not much fun. It’s a lot better than being really sick though.

    So SunnyGal, yes, I think you’re absolutely right on target in your comments regarding the virus.

    Mark, regarding your survey idea....prior to moving out of my moldy house in 2007 and leaving all my stuff behind, I had no idea that mold was an issue for me. I didn’t even have mold allergies! When the body is around mold toxins for a while, a “masking effect” kicks in. It doesn’t show any acute symptoms. Only when people get away from the mold for a period of time and then return to it do they realize that it’s bothering them.

    Almost everyone I know who’s a “Moldie” has had the same experience. None of us knew that mold was a problem for us. In some cases, people concluded that “something bad in their house and other buildings” was bothering them but had no idea what it was.

    And as Mark’s experience suggests, getting away from a building but bringing your clothes along doesn’t provide much of a “demasking” experience. For some of us, only a tiny bit of it can serve as a big trigger.

    Mark, I find your experience in avoiding the mold as a result of avoiding the “burning” to be absolutely terrific. Obviously, the burning skin isn’t the real problem. The burning skin is serving as a warning that you are coming into contact with the mold, allowing you to get away from it (and thus preventing it from harming your body in other ways).

    When people get away from mold and then are reintroduced to it, they can have different warning signals. One is the burning skin.

    Another is emotional symptoms.....depression, panic, anger, anxiety, or suicidal impulses. Erik describes this as a “sixth sense” that is there to serve as a warning to get away from the mold, since “any dumb animal” would automatically leave an environment that felt bad emotionally. It’s only “smart” humans that would try to override such warning signals with, say, psychotherapy.

    Other symptoms that can serve as “first-level warnings” include things like inability to draw a deep breath, increased pulse or blood pressure, heart palpitations/pain, chest tightness, headaches, increased skin “dents,” trembling, feelings of agitation, or mental fogginess. There are lots more. But until people get clear of the mold and then get around it again, it’s very hard to focus in on any of them.

    Mark, are you saying that your clothes are worse when you hang them to dry than when you put them through the dryer?

    All the successful “mold avoiders” I know have said the opposite. Apparently when the clothes go in the dryer, they act as a “filter” for all the air that goes through. They thus get soaked with a lot more mold than they would if they were just hanging up in the same place. I can wash clothes pretty much anywhere, but need to hang them to dry.

    I wonder where you’re hanging them, if they’re getting contaminated when you dry them that way. This will be interesting to figure out.

    In general, clothing and bedding is REALLY important. I didn’t get anywhere near close to being well until I got that under control.

    Regarding destroying mold by freezing: that would kill mold, but the mold isn’t what we’re concerned about. It’s the toxins that the mold makes. The toxins cannot be destroyed by freezing or by high temperatures.

    Related is the comment about the Thieves Oil. When mold in a house is “killed” (with, say, a dehumidifier, ozone or Thieves Oil), it just means that the colony is dried out. Dried-out colonies release more dormant toxin-laden spores than live ones, meaning that the effects of the mold on us get worse.

    Do you suppose that’s what you are experiencing as a “wicked herx,” SunnyGal?

    Mold that’s hidden needs to be located and removed safely by environmental professionals.

    Again, I’m so happy to find folks here talking about mold!

    Best, Lisa

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