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Biotoxin/Mold Illness

Discussion in 'Addressing Biotoxin, Chemical & Food Sensitivities' started by soulfeast, Aug 22, 2010.

  1. soulfeast

    soulfeast Senior Member

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    VIP-MSH and Viral Infection

    http://www.national-toxic-encephalopathy-foundation.org/ritchie.pdf

    The regularly observed deficits in two neuropeptides, vasoactive 416
    intestinal peptide (VIP) and melanocyte stimulation hormone (MSH), 417
    both neuroendocrine regulators of inflammatory responses, suggests 418
    an absence of regulation of inflammation in the development 419
    and persistence of CC. These two neuropeptides have profound anti- 420
    inflammatory effects both in vivo and in vitro; each shows great 421
    promise for treatment of inflammatory disease progression (for 422
    excellent reviews see [8,16]). Deficiency in these neuropeptides can 423
    be acquired either acutely or delayed, as well as through diverse 424

    mechanisms such as acute brain injuries [28] or persistent viral 425 infection [51].

    Although both VIP and MSH have specific receptors in 426
    immune cells, MSH is also thought to directly antagonize the classic 427
    inflammatory interleukin-1β receptor [34]. Receptor density and 428
    affinity for these peptides have been proven crucial to function. VIP 429
    can enhance newly defined inflammatory Th17 differentiation path- 430
    ways through VIP receptor type 1 (VPAC1) [55] while VPAC2 levels 431
    are critical in maintaining Th1 and Th2 states in CD4+ T cells of MS 432
    433 patients [50]. Furthermore, VIP receptor agonists in rats showed
    434 efficacy in protection against Alzheimers related learning impairment
    435 [21] while deficiency was shown to cause cognitive deficits in mice
    436 [11], a common symptom of cases in this cohort. Another critical
    437 role for these neuropeptides is the induction of tolerogenic dendritic
    438 cells and generation of T regulatory cells (Tregs), which suppress
    439 autoreactive T cells and autoimmune progression [16]. Even in
    440 healthy individuals autoreactive T cells can escape clonal deletion
    441 and must be policed in the periphery by Tregs to prevent pathologic
    442 autoimmunity [14]. Of note, these CC study patients with deficiency
    443 of VIP and MSH show evidence of autoimmune findings in elevated
    444 anti-gliadin and anti-cardiolipin antibodies.




     
  2. lono

    lono

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    1. I think it's uncanny how many CFS/ME folks have these important abnormalities:

    - Low melanocyte stimulating hormone (MSH)
    - Low vasoactive intestinal peptide (VIP)
    - High C4a
    - High TGF-beta1

    It is important to note that not everyone with CFS/ME has these abnormalities, but many, many CFSers do. Sooner or later some researchers besides Dr. Shoemaker will finally realize the importance of this. . .

    2. Here's the recent article that found elevated MSH in CFS patients. Sigh. . . I don't have any reason to doubt that the folks in this study have CFS/ME, but I bet their mechanisms and route to CFS are different than mine.

    The increase of alpha-melanocyte-stimulatinghormone in the plasma of chronic fatigue syndrome patientsNobue Shishioh-Ikejima et al
    http://www.biomedcentral.com/content/pdf/1471-2377-10-73.pdf
     
  3. floydguy

    floydguy Senior Member

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    Good luck Joey. Please keep us updated as to your progress.
     
  4. Cloud

    Cloud Guest

    Go for it Joey! Hoping the best for you. Thanks for sharing your plan....that one short post is full of good information. You've probably seen my posts about recent improvements with environment changes. There's surely something to it....how much for each of us remains to be told.
     
  5. jenbooks

    jenbooks Guest

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    Hi Joey.

    You also might want to visit the Planet Thrive community, where mold and chemical sensitivity are frequently discussed, and many live in pristine environments if they can find them.

    I certainly feel infinitely better away from mold and chemicals. They both screw me up in different ways. Toxic molds are the worst, I suppose, and right now I'm in a toxic mold hotel in Georgia, but I sort of had to be here because I had to retrieve some files from a friend's basement to do five days of footnoting something. I hope to get out of this particular hotel (which I've stayed in before) by next week. Since being back (having spent four months in Texas, whose climate and air quality in the places I stayed in was really good, but where I still didn't find safe housing to suit my mold and chemical sensitivity), many mold symptoms have flared up that are really unpleasant. I'd completely forgotten all about some of them, such as muscle stiffness/weakness, bladder irritation, bla bla bla.

    But I personally find being away from mold does *not* mitigate my sensitivities to pollution or chemicals. So we're all different.

    Whether this is genetic, whether toxic molds are just plain old BAD on their own, whether an infection drives it, who knows. I am reactive to ALL molds, just in different ways. And I'm sitting here with the door wide open and the window, to this room, and I still react.

    I should add that Vegas is not necessarily safe. Cheap housing will mold ANYWHERE. If people are using swamp coolers in dry climates, they easily mold. Leaks cause mold. HVAC systems can be moldy, simply from the condensation. It gets extraordinarily hot in Vegas in the summer. I wouldn't be convinced buildings didn't have mold. And I think sometimes the molds that start up in the GFD can be more toxic than more humid less harsh environments. I've heard about bad stachy infestations in AZ, and other dry places. And Vegas probably has a ton of cheap construction from the population explosion and all the new developments, all of which is made with materials I call mold-food, and with shoddy construction practices almost guaranteed to create water damage one way or another. This is not to say your relatives' place isn't just fine, but it may or may not be.

    Therefore, housing is as much a problem as climate.

    It might be easier to go to a safe porcelain trailer or housing in northern AZ, where MCS/mold communities have sprung up. If you get a subscription to Our Toxic Times for $25, they'll send you the latest newsletter by PDF and you'll see some ads. I did not go to that area because of altitude and lack of proximity to docs.

    Good luck!!
     
  6. lono

    lono

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    Good luck, mojoey.

    So do you plan on taking cholestyramine?
     
  7. dannybex

    dannybex Senior Member

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    I'm definitely no expert, but have a feeling that it's perhaps genetic in some cases, but also perhaps a combination of many different factors -- whether they're bacterial, viral, fungal, environmental (including things other than mold, like pesticides, petrochemicals all around us) -- that finally overload the immune system, breaking the camels back, causing what we think is a sudden onset, when it may have been gradually building for years. :confused:

    But avoiding that 'toxic mold' seems to be key for many people in getting better. A friend in our local support group was extremely sick for years. Finally started getting better after doing a zillion different things. Got well enough so she could move into her own apartment. Then about 8 months later she began to decline again...got worse and worse until they discovered a huge hidden mold problem behind the drywall. She moved out...and started on the upswing again.

    I agree. I was under the impression that the majority of these toxic exposures occurs in apt buildings that used that cheesy fake 'stucco' (the perfect 'mold-food'?) -- that came into existence in the late 1960's, early 70's -- hence the increase in mold-related illness starting about 10 years later.

    For what it's worth...

    Best of luck Joey. You may be on to something...
     
  8. jenbooks

    jenbooks Guest

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    I agree, Danny. We all have our own take on this, but given what I've experienced this year of the good, bad and ugly in terms of houses, I think the problem is mainly indoor mold, because it just doesn't grow like that in nature (unless nature is tampered with?), it doesn't get a chance to have these superb infestations. I mean, the 17,000 year old caves in France with famous cave art (Lascaux) ended up with black stachy mold from them putting hvac a/c down there!!!!

    If I somehow muddle through to building my own house, and I'm getting more info as time goes on and clearer about what that would look like, I'm simply not having an hvac system, period. It's too dangerous. The condensation, the possibility of leaks that are spread throughout the house, then needing to replace it, fuggedaboutit. And a basement? fuggedaboutit. Soil holds tons of moisture. Where did we get the idea we should build our houses partly underground, without proper moisture barriers, and WITH drywall and mold food, so they can just mold away?? Underground storage used to be for veggies and potatoes, out in the field behind your farmhouse...
     
  9. jenbooks

    jenbooks Guest

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    Hi Joey. I truly think it's individual. We all overlap, but what drives our illness primarily may be different in different folks, or in a different order of importance. Thus one has to listen to one's own body.

    That said, I was in small towns in Texas for 4 months and forgot about a lot of symptoms that went away--even biting my nails or picking at the cuticles. Back in a city with pollution, things like that are back and I know they're due to pollution. None of it is good for us, it's all really bad, and we're just numb to it as it's our "civilization" and the way things are, but things shouldn't be that way. To try and get to good air, in a good climate, and a good house, is really a tough one these days! Plus good air for one is not for another. For some the thin air of high altitude works, for others, the ocean etc, I'm sure you know all this.

    I did get a nice email from the gal who heads a northern AZ coalition (I was afraid of trying anything in the Tucson/Phoenix corridor because of epidemic Valley Fever), and she basically said, we're all healthy now in this good air in our good homes so we don't see docs anymore. I'm paraphrasing.

    I did not experience that sensitivity reaction--where your sensitivity goes up. I just feel a lot better in good air away from mold, toxic pollution, and toxic chemicals, and instantly worse around them. I have not experienced detox, even when I tent camped in the best places I'd found. I'd just feel better, sleep deeply, have energy, and be in a good mood.(I did get some hay fever at one point after a rainfall in September). In fact, perhaps some of my sensitivities improved, I really can't be sure, but I seemed to tolerate wifi and wimax better in small towns or good air, than in a big polluted city like Atlanta.

    I did unmask to pollution though and when I came back to Atlanta it seemed to STINK of diesel to me. Everywhere. And my partner didn't smell it much, so...

    I think your body already told you your apt has bad mold. So you don't need to go to GFD to figure that out. I don't doubt that for some folks, going to GFD allows them to perceptify mold, but basically, my body always tells me anyway:). I think however when I was living in my black mold infested NYC apt, I didn't really smell the odor after years. The first time I really could smell it clearly was after being away for two weeks. And *then*, recently, when I opened a box of clothing packed for me last year by a friend who was helping ship stuff down, anyway, I opened this box of clothing in my friends' basement here in Atlanta, I was appalled. Most of it was wrapped individual in plastic and taped and sealed, and as I opened each bunch of clothing, it all smelled ridiculously musty. GROSS. I threw it all out. So that's what I was living with and at the time, living in it 24/7 I did not smell it.

    I encourage you to experiment, I'm just saying, don't expect "normie" housing to be safe. I have not been in "normie" housing that didn't have mold issues, and I'm not convinced stachy is the only devil. Lots of molds give off toxins including aspergillus. Usually a mix of molds develops. So anyway all I'm saying is, your relatives' home may or may not have a mold problem, and it may be minor, or it could be major. And often mold *is* hidden from sight, so you can only know by how you feel.

    Good luck tho and keep us posted. I'm not sure what to say about my year long journey so far except:

    1) It's a really polluted world out there
    2) Most homes are "sick". Older homes are better in many ways in terms of building materials but sadly they often have mold, too. Newer homes can be even worse, built tight, with crappy materials, AND mold
    3) It doesn't have to be that way, but that's the way it is.

     
  10. dannybex

    dannybex Senior Member

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    Interesting. I'm sure Lisa will clear this up, but didn't he and Lisa have very specific physical reactions to the stachy?

    The friend I talked about in my earlier post had similar problems. She was so 'reactive' to so many things at one point, that she could not eat LEFTOVERS, due to the bacteria, perhaps the microscopic beginnings of mold, that grew on the food in a period of a few hours (in the refridgerator). She had to have meals cooked fresh for her for almost a year. Not sure how she's dealing with that now, but has considered herself 90% recovered for the past 3 years.
     
  11. Wayne

    Wayne Senior Member

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    Hi Joey,

    Thanks much for your post; I found it to be rather fascinating. I find myself in a situation where I often think of doing something very similar to what you describe. Then I vacillate and consider whether I should go all out and try to do extreme mold avoidance (coupled with extreme EMF/wireless radiation avoidance) here in my own home, with super-HEPA air filters, etc. (Though I may be wrong on this, I tend to believe there is probably some kind of correlation or cross-over between mold and EMFs/radiation).

    Although I’m considering heading to the southwest in late winter/early spring for a few weeks to test the waters of remote mold avoidance locations, I’m leaning toward the at-home option at this time. One reason is the question of my survivability on the open road (as you referenced in your post). Another reason I’m leaning toward staying at home is because I’ve experienced some good results in the past with a couple of therapies (NAET and cranial/sacral) that were able to temporarily alleviate some of the hyper-reactivity I experience. I tend to believe it’s possible mold is just one more exposure that I might be able to address if I could just get my system/immune system to stop being so hyper-reactive to begin with. (I’ll paste my NAET an cranial/sacral stories at the end).

    I recently met a man at the local health spa who moved here to Ashland from California, and has a SCIO machine. He’s offered to work on me and see what we might be able to do as far as my Lyme infections, and whatever else might be going on. His wife, who I intend to visit as well, is an acupuncturist who does a specialized kind of acupuncture that inserts about 50 needles in the head, neck and ear areas. The limited acupuncture I’ve done in the past generally showed that my best responses were when we worked with these kinds of points.

    A short acupuncture story: I have a friend who began to date a mutual acquaintance (who had CFS), and went into a prolonged period of experiencing many CFS-type symptoms. I believe after many months of trying many different healing modalities, he went to see a Japanese or Korean acupuncturist (can’t remember which). Anyway, the only place they inserted the needles were in his hands, about a hundred or so if I remember correctly. My friend said that as soon as he started his first treatment, he KNEW that this is what would get him well. I believe he did about 2-3 treatments total, and was completely well.

    This story, along with other things I’ve read and experienced, has led me to believe that the bio-electrical energy in the bodies/systems of PWCs is disrupted, and if this can be addressed, then all other adjunctive therapies will be far more effective. My experience with Atlas Profilax, which relieved a lot of pressure on my cranial nerves, significantly increased the nerve energy flowing out of my cranial nerves to the rest of my body. (I believe a significant head injury/whiplash in my teens originally caused a lot of this cranial nerve compression, and eventually played a big part in my own ME/CFS).

    Besides doing the AP, I did two other things that I believe significantly affected the bio-electrical flows in my body. I had an asymptomatic root-canaled tooth extracted (with subsequent improvements in chronic nausea and headaches). Amalgam and metal crown removal were also big components for me, which significantly improved my brain function. All of these things and others brought me from about 4% functionality (felt barely alive) to about 25% today. And yet I suspect I’ve still not uncovered all the “structural” components of my illness.

    I still tend to experience “phantom like” pains in some of my gum areas, close to where I’ve had wisdom teeth extracted. Some of Lisa’s descriptions of her experience with Rizols Gamma has me thinking much more about this recently. Do I still have undiscovered focal infections going on at old extraction sites that continue to play a big part in disrupting my health and my immune system, and making me hyper-reactive to so many things, including mold? Another part of my thinking on this results from a book I read entitled “Diagnosis Unknown”. If you haven’t run across it, I think you might find it fascinating. The above link will take you to a post I made which has a link to the free online version of this book.

    So, I’m not sure if this is all making much sense, but here’s where I’m at at this time. Before I head out into the God-Forsaken Desert (GFD), I would like to think I’ve adequately addressed (to the best of my abilities) most other issues that may be affecting me, like unknown focal infections, systemic infections such as Lyme, various viruses, 24-7 EMF/radiation exposure, etc. It seems if I don’t uncover these, then mold avoidance, which might improve my situation just as other things have, will only be part of the solution. I suppose I could do the mold avoidance in remote areas first, but this feels like I might be putting the cart before the horse. So I think in terms of doing everything I can think of before going to the desert.

    As I pause here in my writing, it occurs to me that you’ve probably already done just about everything that I just mentioned above, and that you’re now ready for your foray into the wilderness. Would that be an accurate take on where you are right now? I really appreciate you taking the time to describe much of your thinking on why you’re ready for this new “adventure” (if I may call it that). It really gets my own wheels turning about what kind of plan I should make at this time. At 58, I don’t have the flexibility and resilience I once had, so I tend to think more conservatively. That said, if I had a firm belief something would help me improve significantly, or even completely regain my health, I would risk my life to do so. Nothing ventured, nothing gained. The more we have to gain, the more we have to venture I guess. Perhaps a universal law?

    Again, thanks for your post. I really appreciate posts like yours, Lisa’s and others which reveal in detail some of the strategizing that you all go through. In depth and detailed strategizing is my natural orientation, though having serious cognitive dysfunction and minimal energy tends to impede this to a great degree. LOL But I do enjoy the occasional “bursts” that come along, usually from being inspired by others’ plans and stories. Wishing you the very best as you set out on this new direction of yours. I really admire your persistence in doing whatever it might take to get yourself well again.

    All the Best, Wayne
    ............................................................

    My Experience with NAET to Help Alleviate Hyper-Reactivity

    We have a friend who is an ND and I went to get some NAET treatments from her several years ago. We got together for a couple hours or so daily for about 3-4 days to get through the entire spectrum of vials she had in her kit.

    I experienced a pretty dramatic improvement in my symptoms during this time, and came away from this feeling very optimistic about what it might continue to do for me. Despite learning the finer points of it, and continuing with it once we got home, I found the improvements I had experienced gradually began to fade away.

    Looking back, I think this result was from not having access to the variety of vials that she had, which had some very specific vibrations. For instance, the vial I responded to most intensely was EMFs. But we weren’t able to duplicate that and others once we got back home.

    I also came to believe that until some underlying core issues are addressed and resolved, it was unlikely NAET would ever have the capacity to get me over a the “CFS hump”. Because of my generally positive experience however, I'm quite interested in Dr. Rea's "dose neutralization" methods. I've not seen a detailed description of this, but wonder if it works on the same principle as NAET, and/or perhaps is more effective.

    .................................................

    The Following Chemical Exposure Story is a Cranial/Sacral Experience Which Instrantly Alleviated a State of Hyper-Reactivity

    I’ve had extreme MCS/EI in the past but I’ve improved somewhat over time. I’ve wondered a lot as to how a person could be so sensitive to such small amounts of exposure. I had an experience about a year ago that gave me some insight (for myself).

    I was in the waiting room of the chiropractor/naturopath I go to who also does cranial sacral therapy. Before I knew it, his wife was spraying some “spot remover” on the carpet in the hallway. At the same time she was musing “Hmmm, I just remembered that some people can be sensitive to things like this”.

    Well, about the time I started to reel from it, the doctor came out and escorted me into his office. I told him I could still smell the chemicals and I was getting sicker by the moment and getting so dizzy I absolutely had to leave.

    He persuaded me to go with him into a back room that was still clear. I was very reluctant to do so because I did not want to waste a cranial/sacral session at a time when I was feeling extremely ill. I’m glad I did however, because within seconds of him putting his hands on my head, my symptoms began to wane almost immediately. Most symptoms were gone within a minute. I could hardly believe it as an exposure such as that would normally take me at least hours to start recovering from and sometimes days to get back my equilibrium.

    What I learned is that the exposures I experience seem to primarily affect me neurologically. And I’ve come to believe that so many of symptoms we with CFS/FM deal with are neurological symptoms. Dr. Jay Goldstein’s drug therapy seems to have been specifically developed to alter/modulate neurological responses.

    More natural therapies such as the cranial/sacral I mentioned and some of the NAET experiences others have shared seem to also modulate neurological responses. It appears in most cases that these all seem to be palliative measures and have to be continued indefinately to sustain any improvement we may experience. My goal is to try to correct what is making me have such extreme neurological responses in the first place.
     
  12. mojoey

    mojoey Senior Member

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    Hey Danny,

    Just wanted to post this excerpt from page 57 of Erik's book "Role of Toxic Mold in CFS":

    From page 53 is a comparison of Sick Building Syndrome and CFS:

     
  13. jenbooks

    jenbooks Guest

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    When people take the time to read Erik, he's usually very nuanced about what he's saying. People often misinterpret him. Others get hysterical, say roam around the world, look for the perfect place, throw out all your belongings, don't cross contaminate. But he stayed where he was--although he was near mountains and able to detox very easily by driving up them--kept his job, stayed near family, never advocated throwing out valuables (store them for now), and didn't say you could avoid cross contamination. I doubt he'd cross out whole states or regions as bad, though I gather he thinks certain outdoor areas have become bad-der. And they probably have. I don't want to get into chemtrails here, but I've seen documentary footage that is pretty scary, about remote and pristine mountain lakes and areas with dying trees, and huge amounts of heavy metals that couldn't get there anywhere but from the skies...

    He's really pretty sane about it.

     
  14. dannybex

    dannybex Senior Member

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    Thanks Joey for the quotes, and Jenbooks for your comments. I for years thought Erik was saying exactly that, that 'mold was the cause'. Kind of difficult not to when he uses/used the name ErikMoldWarrior on many forums. It wasn't until I read his story on (I think) Lisa's website, where he went into more detail, that I understood him better.

    Jen -- I did see a pic of him on FB where someone commented on an old jacket he was wearing (from his military days?). She wondered how he could wear it...can't remember the quote exactly, but he said something about 'decontamination'.
     
  15. soulfeast

    soulfeast Senior Member

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    I have met two people recently who became very ill in a moldy house, moved and recovered. One brought belongings: clothes, TV, an appliance, car and eventually ditched them all when realized he was reacting to at least the clothes. The other just moved. The former says he is at a about 90% save gut issues at about a year using csm, infrared, antivirals, antifungals. THe gut issues are bothering him enough to continue to pursue treatment and is focusing back on fungal infection. The latterI think presented more like cfs, bed bound at times, couldnt function. It took her a year in new house to recover and now she is a brown belt in karate. She does relapse when she goes into her basement for a period of time and crashes from time to time. She does contact karate (dont know if there is any other kind) but she paces herself. I wish to be as well as she is. I dont think she got rid of any of her belongings and obviously her basement has issues. I wonder how well she would be if she started over with a better house and left her things behind.

    EDIT ADDITION: The woman with more cfs like symptoms did very well after a year of recovering until a knee operation. Thens she started crashing but still is very active.

    How do stem cells reset halotypes?
     
  16. soulfeast

    soulfeast Senior Member

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    Erik's book is more nuanced and yes there is definitely a strong thread of ocd like fear of contamination, cross contamination that is overwhelming. Theres is a strong sense of searching for the perfect location and that location never becoming contaminiated, cross contaminated. Its enough to drive a sick person insanely sicker.

    As Joey stated, and others have stated including me in certain venues.. simple direct guidelines would be helpful but it certainly is not Erik's or Lisa's job to write those up. They would be helpful from the extreme mold avoidance perspective to the mold avoidance perspective to treatment perspectives for biotoxin illness.. it is like pulling teeth to round up info even from Shoemaker.

    There is a sense of hysteria and I dont know how much is actually "valid" and how much is misapplying all physical sensations to mold.

    Also as per Dr Thrasher and now Shoemaker.. it is no longer "just" mold toxins from living or dead mold.. its wet building damage stew of gram neg and pos bacteria and endotoxins. Dr T is finding these organisms in cultures from sinuses, lungs, and gut. The endotoxins I believe are similar to mold toxins.

    So we are also potentially dealing with infections, including yeast-fungal infections from being exposed to wet building damage.

    Once the biotoxin pathway is primed, then we are extreme reactors to differing degrees it seems. It looks like potentially low vip and low msh may contribute to this, not sure.

    It was interesting to read in previously posted pdf that shoemaker was referring to chronic viral infection as a cause for low vip and low msh.

    EDIT ADDITION: It would be great to have a compilation of stories of mold illness and recovery including symptoms and steps to recovery.. where did and how did people relocate, treat the idea of cross contamination, the potential role of retreating to more pristine areas (and how to define and find them) detox or living in more pristine areas to detox or stay well.

    Erik's book is extremely helpful. It would be helpful to have a shorter version and a compilation.. in a perfect world... :) I think everyone should read the book if interested in this to get a clearer idea of what he is talking about.


     
  17. soulfeast

    soulfeast Senior Member

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    I moved out of my house. I started to feel better about 6 months after remediation. Growing mold may be more of an issue than dead mold though dead mold is still toxic. I was reacting to the dust and I think possibly starting to unmask. Almost instant drop dead depression and catatonic like states when messing with dusty things.

    Moved out of convenience to another state near parents in a new house my father just built. Have no idea if good air exists in alabama or can near a lake, river. Felt an obvious lift in symptoms almost immediately though harsh leg pain that improved greatly with visit to chiro so dont know how much due to riding in a car for a day non stop.

    All clothing and cloth, stuffed furniture is trashed. Papers as well except important, special ones that are being stored. Some furniture being stored. I personally have not feeling of investment in any of the furniture so this is up to my husband. Car is being sold. I dont want to take that chance. We brought some items few that we have out that could be wiped off (sons hand held game system and games and KMT, PE-1, husbands camera and lenses) and did not have fans except my rife machine in storage here and my husbands laptop.

    There is debate over whether toxins can stick to or absorb into certain materials.. some say yes def (like Erik) and others say no (Dr. Thrasher and others). This is a huge sticking point, pardon the pun. If you cannot wipe an object off, then this is where some of the fear of contamination comes in... I would love to discuss this without either side yelling at anyone attempting to ask the questions. This is a point of division obviously.. for those of us trying tos ort all this out, the division and sense of antagonism on both ends is overwhelming.


    Started unmasking about 3 weeks in.. all smells overwhelming. Started reacting to "moldy" things.. musty smells.. toxins dont have to smell but what I was reacting to had a smell.. brain inflammation though not as extreme, breathing issues.. toxins, antigen, etc, I dont know.

    Started csm with little if any intensification reaction but had to back off of 4 doses becasue stomach not emptying fast enough. I think 3 will be fine. Got cold.. off csm and starting back on last night.

    It would be helpful to understand common reactions when moving into a clean enough or pristine environment.. do you feel better always.. do you start to detox on your own, and how does that feel, manifest? How many people use csm and other bile sequesterants and how is, has that worked? Gone any further with treatment for tgf-b1 and vip?

    How did you relocate? Did you scout out a location, get lucky, did the location matter as long as out of the house where the mold was growing? How sick were you, etc. XMRV positive? Viral, lyme?

    I did not begin my cfs with a viral infection. I started with neurological symptoms and tachycardia. I was diagnosed with biotoxin illness at a clinic who took it on as a fad.. did not even tell me to check for mold.. did not check proper labs and prescribed csm. I was diagnosed with clinical case of lyme soon after and was told the biotoxin stuff was not relevant.. use chorella.. treat lyme and babesia.. babs was an IgG pos. I got sicker not better.. abx made me sicker and not just a herxheimer sicker.. after two years, treatment on and off becasue I could not tolerate, CFS developed.

    Same time mold was stewing in my house. I am lyme pos IgG and one indecisive band from pos IgM. Lyme doc says its important what bands are pos and I see her in a month. Obviously, lyme is a factor in one way or another and recent ILADs conference notes indicate that the line of thinking is that herxheimer reactions from lyme treatment can trigger xmrv... cytokine upregulation.. mold = cytokine upregulation.
     
  18. jenbooks

    jenbooks Guest

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    Yeah, I'm lyme & mold too--mercury poisoning/fungus also. I don't see a big viral aspect to my problems tho who knows.

    I'm not convinced you went to a better place. You may not be unmasking. You may have a different set of molds where you are now in Alabama.

    I know that's not a popular view.

    But I've been in a lot of dwellings--homes, apartments, hotel rooms, cottages, multi-family homes etc etc--in three states for over a year now, and I think most dwellings have mold problems. A few didn't, a very few. And I react to those molds (or bacteria, as you note--water damaged materials).

    HVAC systems--frankly how could they *not* be a problem. Fiberglass flex ducting???? Condensation from hvac systems etc.

    Read Paula Baker LaPorte's Prescriptions for A Healthy Home and think again. Think about the fact of insulation and what it's made of.

    Alabama, like Georgia (where I am now, and not sure if I can build here or not. I was better in Texas, I think, but have reasons to build here and finding a perfect place is a crapshoot--it could get toxified by new industry, new power plants, new controlled burns, new developments, god knows what)...anyway, it's very humid, and probably most dwellings have mold. Because they were not properly built and that's that.

    As for stachy, I absolutely unequivocally *know* the toxins stick to things for ages and ages. Erik says five years if stored in a dry climate so he must be right. I know this because occasionally I expose myself to items from my apartment. I guess I can't believe it's really true. So I got a pair of fabulous sandals out of my box in my friend's basement the other day. They were bagged and taped in plastic. I'd never worn them but I'd stored them openly in my closet.

    So I unwrapped the plastic today. They smelled slightly musty (stachy doesn't smell, that would be the other soup of molds in my infested black mold apartment that sustained 11 serious leaks and 2 of them actual floods, during demolition/renovation of our prewar building in NY). But my mood immediately darkened horribly. I felt that old depression coming back with those unspeakable dark thoughts. It reminds me that I have not encountered stachy of that virulent nature very often since leaving NY, and that was the worst mold I ever encountered (that strain) as it caused such severe depression.

    I couldn't believe it. I was so mad! LOL. I like my sandals. I may not give up the sandals. The one thing that seems to detoxify is UV light. So I may just put them out in the sun, though it's only upper 60's here right now, and a hot sun seems better as it has more UV light to offer.
     
  19. Wayne

    Wayne Senior Member

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    Ashland, Oregon
    Would boiling your sandals detoxify them and/or other clothing? That might sound like a funny question, but we have a feature on our washing machine that can heat hot water even further upon demand. So if regular hot water is 140 degrees, this feature will heat it up to about 160 or so. If you turned your hot water heater to high, who knows, maybe you could get the water temperature up to 180 or more. I've heard dust mites perish at around 145 degrees or so. I guess I've been wondering whether mold can be kept in check and/or washed out of clothing using extra hot water. Anybody?

    Wayne
     
  20. jenbooks

    jenbooks Guest

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    Well they're soft leather and green so that would ruin them. I've heard stachy toxins are heat resistant to hundreds of degrees. I've personally experienced a hot summer sun working after a week or two for small items.
     

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