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Biotoxin/Mold Illness

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

  1. Wayne

    Wayne Senior Member

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    Ashland, Oregon
    Shoemaker's Biotoxin Illness Website

    I just ran across Shoemaker's Website, and thought I'd create a link for others who have not familiarized themselves with it (such as myself). At first glance, it looks quite fascinating. I read this (below) on one of the pages, and plan to peruse this site much further.

    Best, Wayne
    ..............................

    Erythropoietin lowers C4a, corrects refractory symptoms and normalizes selected abnormal brain chemistry in Chronic Fatigue Syndrome

    Objectives: Chronic Fatigue Syndrome (CFS) is a systemic illness associated with unexplained abnormalities in inflammatory responses, including innate immune system elements alpha interferon and pro-inflammatory cytokines (PIC). Little is known regarding the role of C4a, a powerful inflammatory anaphylatoxin produced by activation of the classical pathway of complement, as part of the innate immune response in CFS. Clinical data in over 1000 patients seen at one site documented the common occurrence of elevated C4a in CFS patients. Because use of low doses of erythropoietin (epo) safely lowered levels of C4a in other illnesses associated with elevated levels PIC, we hypothesized that (1) low doses of epo would lower symptoms and C4a safely in CFS patients; and that (2) lowered C4a would be associated with durable reduction of symptoms following cessation of therapy (3) reacquisition of symptoms would be associated with a repeat rise in levels of C4a.

    Methods: 60 patients with CFS and C4a agreed to take low doses of epo in an off-label study. Symptoms were recorded before each dose of 8000 units of epo, given for 5 doses over 15 days, as was evaluation for adverse effects. C4a levels were drawn at the conclusion of the 5-dose regimen. Patients were classified as either non-responders or improved. Improved cases were observed for relapse in symptoms for 3 months. Improved patients were classified as relapsed or non-relapsed by symptoms. Repeat C4a levels were drawn in improved cases at three months.

    Results: No adverse events occurred aside from soreness at the injection site in 10% of patients. 51 patients noted symptom reduction with epo; 9 did not. Of the improved patients, 34 relapsed; 17 were non-relapsed. C4a levels at entry showed differences: mean levels in non-responders were 19,500 (normal < 2830); responders 8200, with reduction to 11,300 and 3200 respectively. In the relapsed group, mean C4a rose to over 12,500 and in the non-relapsed group C4a was 3400.

    Conclusions: Use of low dose epo in CFS patients in a short clinical trial safely lowered symptoms and improved levels of C4a in responders. Failure to lower C4a adequately or reacquisition of elevated C4a was associated with ongoing presence of symptoms. Maintenance of lowered C4a was associated with improved quality of life. A double blinded, placebo controlled trial is planned.

    Click here for pdf file
    .......................................................

    Treatment of CFS patients with elevated C4a using low dose erythropoietin corrects abnormalities in central nervous system metabolites and restores executive cognitive functioning.

    Objectives: Recent literature has supported the concept that erythropoietin (epo) is a neuroprotective agent for peripheral and central nervous system (CNS) that specifically prevents apoptosis of glial cells and improves capillary hypoperfusion in CNS. Treatment of patients with Chronic Fatigue Syndrome (CFS) and elevated levels of the anaphylatoxin C4a, an inflammatory product of activation of the complement cascade, using epo lowers C4a and reduces neurocognitive symptoms. Magnetic resonance spectroscopy (MRS) can demonstrate levels of metabolites that are markers for CNS function. A prospective clinical trial was performed to assess (1) safety of epo in CFS patients and those with elevated C4a; (2) efficacy of epo to improve symptoms, reduce C4a and correct abnormalities in CNS metabolites; (3) provide data that supports a testable hypothesis of the inflammatory origin of systemic and CNS symptoms in CFS.

    Methods: 35 patients with CFS provided informed consent for an IRB-approved study. Symptoms of executive cognitive function, C4a and MRS of 1 cubic cm areas of left and right frontal lobes and left and right hippocampus before and after treatment with 5 doses of 8000 units of epo given by the study physician over 2 weeks were compared to known controls. Symptoms were recorded at each visit, as were levels of C4a and a review of possible adverse effects.

    Results: Symptoms of executive cognitive function were reduced in cases after treatment, though still higher than in controls. C4a was reduced beginning after the second dose of epo, achieving values equal to controls in 91% of cases. MRS-determined values of n-acetyl acetate; creatine; choline did not change in cases and equaled controls. Myoinositol was elevated in 20% of cases with reduction after epo in all to control values. Lactate was elevated in 77%, with reduction in all after epo to controls. Ratios of glutamate to glutamine were abnormal in 97% of cases, with reduction to controls achieved in 55%. No adverse effects of clotting, elevation of blood pressure of development of iron deficiency anemia occurred.

    Conclusions: Use of low dose epo in CFS patients is safe and effective to improve symptoms, C4a and CNS markers of abnormal glial cell function (myoinositol); capillary hypoperfusion (lactate); and excitatory neurotransmission (glutamate/glutamine). These results suggest that the systemic inflammation in CFS caused by elevated C4a may be treated using epo and that the CNS correlates of cognitive dysfunction in CFS patients has an inflammatory basis. A double blinded, placebo controlled trial is planned.

    Click here for pdf file
    Last edited: Feb 6, 2014
  2. soulfeast

    soulfeast Senior Member

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    My sister recovered here so I hope it will work out ok. She was extremely ill. As for the depression that comes from seemingly some forms of stachy... yep. I was swinging crazily in mold house and the darkness was deep and immense. At one point I was not sure I could snap out of it. Thats when I knew we had to go.

    I am not sure about the absorption. Spore fragments can be very small and still adhere to items. I would like more information. I sent one article that has been passed linked to on a server reactors list to Dr Thrasher who said he's seen it and it does not mean the toxins detach from the spore.. I dont know.. I just know there is controversy over this matter and it seems to be a key diff between two diff communities.

    Musty has also put me over the edge since I moved here. One item at walmart.. halloween costume opened in a bag that my daughter wanted.. smelled off and I made the mistake of putting my nose to it and sniffing. Not as bad as in stachy house, but pretty bad. Another time this happened here was when we went to a halloween party at an older building here then to my parents house while I was on diflucan and csm. My parents just remediated after a very high spore count from an indoor hot tub. One of more of tehse plaves triggered another brain inflammation event. Still not as bad as stachy house.. diff.. but brain inflammation.

    I am not ruling out a fungal die off.

    This house is new and no leaks but that does not mean there is not mold behind walls. The air quality.. I feel better out of the house than in it. Lots of new house chemical smells and I hope the dog did not being in spores. We did our best with her.. shaved and washed many times. She is out of the house now but her hair still is coming out of the woodwork.

    I was unmasking to chemicals for sure. I can tell when I am smelling chemicals. The brain inflammation I thought was all mold related, not sure at this point if chemicals can do that as well esp when BBB is damaged by the mold toxins. I had another event (I think my 4th) after the sewage backed up into bathtub and shower and I used clorox to clean it out. I woke up in alot of pain as well, left the house and the inflammation subsided as did the pain. back in the house pain started up almost immediately as did the brain inflammation. I am not sure about unmasking to mold but I assume that any unmasking is a sign of progress in a twisted way. I can put brain inflammation and tachy together with possible exposures though I have not been able to pinpoint exactly or predict and get out before damage is done. But it was in the stachy house after the remediation that I started being able to put potential triggers together.. before that all was a mush of symptoms. Ex: file though papers and the bad brain inflammation sets in. Clean out lanudry room and the bad, worst inflammation sets in. Before that I was dropping to the floor without any rhyme or reason with depression seeminlgy out of the blue. So I'll try to take that as progress.

    There is something alive in my sinuses as well. Most likely fungus. Oddly not macrons though my msh is low.

    As for southern states.. ??? I dont know. I hope good enough from now. The carribean is humid isnt it? Does humid make a difference?

    We shall see. i am keeping up with labs and we'll test my c4a and tgf-b1 after a solid month on csm. The rule is test one week after stopping csm and if goes up, then still biotoxin exposure. Test 4 weeks after stopping and if goes up at that point, living biotoxin source in the body like lyme. I wonder if candida or other fungal infections can also produce biotoxins.

  3. soulfeast

    soulfeast Senior Member

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    conflicting reports on UV at least in the form of UV lights.. all mold lists I am on say no to that, not sure about sunlight as a way to denature toxins?? maybe outgassing them??? or the wind carrying spores or spore fragments away?.. UV lights will kill the spore but not the toxin then when the spore is killed it breaks into fragments which can more easily be breathed in and harder to clean up. but when i google i thought i got some scientific reports of UV denaturing toxins. ammonia as well. ?? I was told bu one moldy that he was told by a mold specialist, md to use ammonia in wash and make a spray of ammonia and water and spray items that have been contaminated.. this was after relocating and when one is being re-exposed. Not as a way to clean up.
  4. Forebearance

    Forebearance Senior Member

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    I finally figured out a way to log in to this forum. Whew.

    Best wishes with your mold avoidance experiment, mojoey! I'll be thinking of you.
    Like you, I had a very classic, non-complicated case of CFS. Mine started with EBV, but at the time I was living in a basement apartment. My bedroom shared a wall with the laundry room. So I think the chances of there having been some toxic mold in the walls were pretty high.

    I've done just moderate mold avoidance, kind of the basics, as described on my website. What it has done for me is that I no longer feel half-dead. I can now do some things, and have some energy and stamina. I can tolerate taking methylation supplements if I'm living in a decent place, and I can tolerate Lauricidin and Virastop. I still feel like a sick person, and a tired person, but I'm having a bit of a life.

    On the other hand, the way I've done mold avoidance has made my life pretty difficult. I've had to start over with all new stuff seven times now. Except I've only gotten a new car twice and a new computer three times. It's been a challenge to find decent places to live, and I've had to change living places pretty often. The longest I've lasted in one place has been seven months.

    I can't remember if you ever saw my website, jenbooks. Maybe you would like it. It's got all the research I did into mold-free home building. Except that I haven't been able to edit it since I first made it, so there are a couple newer things I've found that aren't on there. Here's the link:
    http://web.me.com/moldfreehomeideas/Index/List_of_Links.html

    Forebearance

    P.S. Edited to add that what I mean by "the way I've done mold avoidance" is that I have chosen to stay in the town where I live, and I have chosen to live in buildings.
  5. jenbooks

    jenbooks Guest

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    Thanx, Fore. I can't get rid of everything I have every time I'm in a moldy place because 90% of places are moldy. It's just too trying. I've taken to just taking a few clothes into a given place, in nylon and/or plastic bags, and trying to contaminate as little as possible. I have a gawjusssss 2005 new f150 pickup and it's pretty tolerable (not perfect) and today after driving it, i washed down the cloth seat with bronners, because Iprobably slightly cross contaminated it. Because my partner has our crappy dodge neon, I can now continue to contaminate that and keep my f150 cleaner;).

    I will go to your website right now!

    Edit:I posted your site on Planet Thrive's Safer Housing, fore. You have a lot of great ideas. I came to many of the same conclusions. You do need a slab, with a proper vapor barrier, by the way, and usually that's plastic over gravel. I agree about hvacs and ducting, though they can be done safely. I don't want radiant heating myself--I think small "pods" as one woman described them, rooms individually heated and cooled, is safest, with lots of windows. Less is more. Great ideas! I'll let you know what others say.
  6. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi All,

    I just started reading this thread and thought I'd share my experience.

    I was living in coastal Florida and had been through all the moldiness of 2 hurricanes. Then there was the oil spill on the beach across the street. I knew I had to get out and for the first time in my life had the option to choose the climate I was moving to.

    I went to the foothills above Albuquerque, New Mexico. It is very sunny and dry here, the air seems very good and I chose a relatively new (not swamp cooled!) apartment high above the city. So far so good. Some symptoms are better. It is too early to say for sure that this climate makes a difference--but I think it does.

    I sold my condo "with contents" though all the contents were new after the 2005 hurricane. Still I brought very little with me. Getting together a new household right after the enormous stress of moving hasn't been easy, but I think it has been a good decision to come here. The altitude doesn't seem to bother me (about 5000 ft).

    Next I am going to try to treat XMRV with De Meileir. All I can say is that I am hopeful.

    Lots of hope for you too Joey--hope the relatives' house turns out to be good.

    Sushi
  7. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Sushi, just curious, so you are going to Europe to see De Meileir? Perhaps I am wrong on where he/she is located?

    GG
  8. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Yes, I am planning to go to Europe to see him. Right now he seems like the best bet for me as I am XMRV+ and he seems to be getting some good results with GcMAF and other strategies. He is developing protocols in association with Cheney and others, but even figuring in crossing the Atlantic, seeing him is a lot less expensive than the good doctor choices in the US.

    There are several of us on this forum who have decided to travel great distances to Belgium because we don't want to wait...and wait...and wait for treatment.

    Best,
    Sushi
  9. mojoey

    mojoey Senior Member

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    Hey Forebearance,

    Thanks for the warm wishes. I'm gonna check out your site...I know you've been at this for awhile so you have a lot of valuable insight in this area. Thanks for putting all of it in one place ;)

    Sushi--

    I wish you the absolute best in europe. We're all excited to hear how you and Serg do. I think there is a lot of smoke & mirrors with every therapy, including ampligen & gcmaf, and i know a lot of patients just take these doctors at their word because, well, in many ways they deserve to be taken at their word. However, as we all know no one has the whole answer, and I trust you and Sergios' sleuthing and pointed question-asking as much as anyone's to get to the meat of this gcmaf matter ;)
  10. jenbooks

    jenbooks Guest

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    Dr. Deckoff Jones hopes to be in practice soon and you might want to wait for her as you are so close to her now--she's in Santa Fe.
  11. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi Jenbooks,

    Thanks, and, yes, I have been in touch with her. It seems to be a protracted process to go back into practice. Seeing her would definitely be more convenient!

    Knowing that she has had success with anti-retrovirals, I'm guessing that this may be her first focus for treatment. As far as the AV's go, I'd rather wait for more research and experience with them to emerge. But I'll consider anything that works--weighing risks and benefits. We are in a limbo time with treating XMRV. It is difficult to know what to do...unless we just wait for the winners to emerge.

    Sushi
  12. jenbooks

    jenbooks Guest

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    Sushi, I wouldn't second guess her like that. She has run an EEG neurofeedback and hyperbaric center, and is conversant with all kinds of meds. I think she would be interested in the best overall approach, of course she's very interested in ARVs, but who's to say if you gave her papers of and work of Kenny DM that she wouldn't be quite open to trying what you wanted.

    Before you go over there, you might just email her as to ETA for working again and whether she's open to discussing/treating in his way first. Not trying to be bossy but its only a 45 m drive!
  13. mojoey

    mojoey Senior Member

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    Hey Jenbooks,

    I think I've given Dr. D-J just about all the info I've gotten on gcmaf, but she hasn't shown much interest yet, directly to me anyway. I think she definitely has a preference for the ARV approach because, well, wouldn't we all if we got the results that she and her daughter have had? And she has no qualms about experimenting if it makes sense from a logical & scientific standpoint. Also, her thoughts on ampligen in her blog: "I have no personal experience with Ampligen. My impression from my mail is that some have experienced a partial remission from it that generally doesn't last," may also paint her thoughts on gcmaf, since both are immune modulators with no proven direct action on retroviruses.

    However, I'm pretty sure she is in communication with Cheney, so will receive updates from him as his patients try the product. If not, I'm sure those that are in the know will update her.

    Personally I would definitely consider seeing Dr. D-J if I decided to go the anti-XMRV medication route, and I've told her as much. Besides everything she has to offer as a practitioner, going to Sante Fe is that much more appealing over other top CFS docs because of my decision to do radical mold avoidance.
  14. jenbooks

    jenbooks Guest

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    Hmmm. I'll ask her.

    Although to be honest I don't think GCMAF will be the answer to XMRV.

  15. JanisB

    JanisB Senior Member

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    This is an incredibly rich thread, and my brain is only absorbing a tiny bit of it right now, as I have a sinus infection making me tired. What I'm trying to understand from it all, is how to go about home testing.

    My doc ordered the genetic HLA DRB DQB. But the damn lab only did half of the test, so I learned I have DR8 and DR11 but not whether there is anything about VEGT. I also had elevated C3a (2972) and low MSH (3.9).

    While I've been waiting for 2 months for the tests to get reordered, I decided I ought to test my house. The company I spoke with said the way to get started on this is to buy test kits at Lowe's and do one exposure in the house and other outdoors at the same time. If the in house test grows mold before the other one, then it's a problem in the house, and we can send it into a lab to test what kind is there.
    Please help
    Is this the correct way to proceed? Is there any other way to know if biotoxins from mold are a problem in my house? (I really don't experience any better health when away from home. And if I do go into a place that smells moldy, I get symptoms right away.)
    JanisB
  16. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Oh, sounds exciting, roadtrip! Best of luck to you and whomever else is traveling, reminds me of the stem cell thread. Where has this discussion been going on?

    GG
  17. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi GG,

    A lot of the discussion has been going on right here in the forum...but we are so big and there are so many threads it is hard to keep track of who is doing or contemplating what.

    Quite a few here have mentioned that they have seen De Meirleir or are planning to. The ones I am in contact with personally have known each other for years after following each other's progress on several forums.

    I hope it will be a worthwhile trip...any gain is a gain and little gains add up. It is difficult to know where to stake your energy and treatment $$. But but knowing now that I am XMRV+ and having had encouraging results going after this retrovirus with less powerful weapons (using laser activated herbal treatments), and having had good success with LDN, I want to try a more powerful immune modulating protocol.

    I don't think their will be one magic treatment, but just getting better would be very good.

    And back to the subject of this thread (don't mean to be hijacking!), moving to New Mexico to live in a dry and hopefully minimal-mold area is for me another strategy to get better.

    Best wishes,
    Sushi
  18. soulfeast

    soulfeast Senior Member

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    janis,

    shoemaker recommends the ermi. it is a dna test of the dust in your house. it will be two locations and you will vacuum a carpet or dust under sofas in corners, top of shelving.. where dust collects. shoemaker goes by the total score.. and this compares your house mold load to a standard .. after remediation mine was in the lower 25% for moldiness but I still left becasue I was reacting to the dust.

    this is where i got my test. shoe recommends another lab mycometrix? and there is a lab i think called EMSL.. ?? the people at bioassued were very helpful when i had questions.

    http://assuredbio.com/ermi-dna.html

    the test will also give you a list of molds and values for them. bioassured sent me a chart to compare the values to a norm.. i had several toxic molds out of norm range though my house tested in a decent range overall..

    lets see.. did your md check c4a, tgf-b1, vip, epo, mmp-9 and other labs? i may be wrong but c3a may also be a lyme marker.. its difficult getting this info sorted out.

    i am looking at mold warriors and not seeing and 8 and an 11 together.. so you may be clear genetically..

    your msh is extremely low.. and you do not have a low msh gene or you would have a 5 or 1 in those numbers if indeed they are correct.

  19. JanisB

    JanisB Senior Member

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    Why? dust mold grow in dust, or does the test find the mold toxins? This is interesting as I've always been allergic to mold and to dust, and I never thought the two could be connected. I feel so ignorant on this topic :) These tests are expensive. I think I should do the medical tests first to see how much of a problem it is. I'm not sure which is best to pursue first.


    Thanks, that makes it clear why the general $10 test from Lowe's is worthless for us sensitive people.

    No other tests ordered. I looked at the results and the exact report reads "HLA-DRB1 08 (DR8) and HLA DRB! 11 (DR11). The doc said DR11 was potentially a problem but he needed to see if I had something under VEGF to be sure. I'm wondering if he made a mistake trusting memory.

    Doc said that combined with high c3a indicated a recent exposure, which I did have, as we found green mold growing on the back of the dresser in the guest bedroom where I sometimes sleep when I'm having a bad night. I'm now interested in getting both of those retested, as they ought to have normalized if no recent mold exposure. Perhaps I should wait as I had another mold exposure in a house on campus in mid October. I've had sinus stuff going on ever since. Any idea how long before these numbers normalize after an exposure?

    Thanks Soulfeast for your detailed and very helpful response.
  20. lono

    lono

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    JanisB -

    Dr. Shoemaker tests lots of different things, but there are several biomarkers that are consistently off in folks who have this problem.

    These include:

    - High (elevated) TGF-Beta-1
    - High (elevated) C4a
    - Low melanocyte stimulating hormone (MSH)
    - Low vasoactive intestinal peptide (VIP)

    See this recent working paper -

    Innate immunity, MR spectroscopy, HLA DR, TGF beta-1, VIP and capillary hypoperfusion define acute and chronic human illness acquired following exposure to water-damaged buildings
    http://www.iaqradio.com/ShoemakerImmunity.pdf

    Also note that Shoemaker's current term for the illness is - chronic inflammatory response syndrome (CIRS).

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