1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Hunting down the cause of ME/CFS & other challenging disorders - Lipkin in London
In a talk to patients in London on 3rd September, Dr. W. Ian Lipkin described the extraordinary lengths he and his team are prepared to go to in order to track down the source of an illness, with examples ranging from autism to the strange case of Kawasaki disease.
Discuss the article on the Forums.

Biotoxin Treatment

Discussion in 'Addressing Biotoxin, Chemical & Food Sensitivities' started by soulfeast, Dec 12, 2010.

  1. soulfeast

    soulfeast Senior Member

    Messages:
    410
    Likes:
    44
    Virginia, US
    Starting a new thread about biotoxin treatment for those with biotoxin illness due to mold, lyme or other biotoxin producing organisms. This thread will include treatment as well as "mild to moderate" biotoxin avoidance experience and advice.

    The thread is for mutual support and sharing of info and experiences in the parameters of what is considered treatment and "mild to moderate" mold avoidance.. wish there was another way to phrase that. How about biotoxin or mold management which can mean managing daily mold encounters and avoidance but does not mean living in a house with mold.
     
  2. soulfeast

    soulfeast Senior Member

    Messages:
    410
    Likes:
    44
    Virginia, US
    This post is being moved from the Biotoxin Illness thread. Its an old post dated Aug 2010:

    Want to start a specific thread for this.

    Testing so far:

    HLAs: multisuseptable (4-3-53) and low MSH (1-5). Seemingly this is the worse combo one can have.

    Tests three years ago (tested by an alternative clinic newly into biotoxin illness and not very savvy about it.. didnt think to have me check my house for mold or to test other important markers than the ones I wil llist below then handed me a script for csm.. then lyme doc was not convinced of all this biotoxin stuff and convinced me not to follow up)

    leptin low
    msh low
    vip low

    this was three years ago when I was not having CFS symptoms, more neuro symptoms.

    Real Time Lab urine mycotoxin came back neg (I just heard from someone who has been through this who told me her labs were also negative but still had mycotoxin illness.. this is a random spot urine test)

    IgE mold panel neg and IgG or IgM for stachy neg.

    This year tested house for second time for mold.. located.. remediated... stachy. Given we all have a "dreaded" HLA type here.. two of us tested for low msh gene as well, we are getting out of the house, getting rid of most furniture and having the house cleaned. Most likely will not return. Stachy does not go air borne so its a difficult mold to locate. We did have a proper remediation with rooms sealed off, blowers, scrubbers, etc but there was cross contamination that we do know of on MBR carpet coming out of bathroom with the stachy and one spore was found (equates to 7 spores per cu meter) in LR which is one story down from bathroom and most likely from cross contamination. Thats not a lot, but we dont know how much and may never since stachy does not stay air borne for more than 2 hours.

    We are ordering an ERMI to get some idea, but we are convinced to get out of here without our belongings.

    Running shoemaker labs next (along with XMRV-HGRV) to get a clearer pic. (I do have XMRV PCR pos)

    Would love to hear experiences from others.
     
  3. soulfeast

    soulfeast Senior Member

    Messages:
    410
    Likes:
    44
    Virginia, US
    The ERMI showed our house post remediation was within the lower 25th percent of houses for mold but there were certain molds that carry toxins that were in higher counts than normal. I believe this is good enough and considered OK as far as Shoemaker's standards. I was starting to feel better in the house.. more energy. This was 6 months after the remediation.

    Further testing.. specific to carpet leaving out of master bathroom where the stachy and wet building damage stew was growing, revealed stachy spores in the carpet.

    There were no other stachy spores found beyond direct sampling of the WBDed area which was the contained in the knee wall of the shower. I understand stachy spores are not easily airborne and it would take disturbing them to release them in the air. They seemingly make people sick air borne or not. Correct me if wrong.

    The overriding facts are my biotoxin results (lyme or mold related.. I still am not certain which has caused the most damage) and the fact that we did not clean the house properly after remediation. We did not get rid of or clean items that might have been effected and I started to react directly to the dust in the house.

    I had sinus to brain inflammation which lead to a fast and deep sometimes very dark depression and catatonic like state.. very tearful and anxious. This happened when I cleaned out the laundry room and when I shuffled through papers. It only took twice for this to happen for me to stop all activity in the house that would disturb dust.. thats how intense and scary the reactions were.

    I cannot say why or what caused this, but it seemed for me the best move was out.

    My husband is cleaning the house, trashing most items that carry dust and cannot be cleaned. I am rightly or wrongly terrified of anything from that house after my experiences.

    I know some people manage to keep many things (most throw out or store papers and cloth, stuffed items that cannot be washed) but there are few things I care to keep. I might change my mind as time goes on.

    Kids and I are in a new construction and that presents its own problems. will report on biotoxin treatment;
     
  4. soulfeast

    soulfeast Senior Member

    Messages:
    410
    Likes:
    44
    Virginia, US
    Older post from Biotoxin Illness thread. My tests results:

    I have more testing in. I have been out of the water damaged house (bathroom knee wall) for about 3 weeks.

    My c4a is elevated and tgf-b1 as well. C4a levels are between 9000 and 10000. This is the range where Shoemaker puts chronic lyme.

    My Igenex Wb is back and I am IgG positive and IgM borderline.. 2 bands make a positive and I have in indicative and one positive.

    My VEGF is in normal range which is good news and my EPO is slightly elevated. This will make VEGF rise.

    Macrons test still pending as are a few more biotoxin related labs. Retroviral labs as well are pending.

    When I first relocated, I felt my symptoms lift. I felt more energy. Then my back went out and my legs were causing a lot of pain.. and it felt like toxins accumulating in my legs. Chiro seemingly addressed this and the toxic, full feeling in legs lifted greatly.

    Now I have crashed. I dont know if this is par for the course when one relocates and would love some insight.

    I am also looking for info to share with my MD about the use of actos. I have a leptin level of 7.7 and the cut off for using actos is 8.0. I read where one person used actos with a leptin level of 7.9 and I am not sure how hard Shoemaker is that line and why.. any explanation, insight, experience would be appreciated. Actos helps keep the cytokine reaction down but if one has low leptin there is a potential complication and though I have read this somewhere (or saw on one of shoemakers videos) I cannot find the info to give to my MD. It is like looking for a needle in a haystack. I dont know why Shoemaker cant make this info more clear and more accessible.

    Im about to pull the can of csm out of my pantry and start using it.. my concern is that a lyme infection actos is even more necessary ..seeminlgy more cytokin action is triggered.

    Thanks for any input. If you have a mold recovery story to share, please do, whether you are in process or have completed your journey.

    Thanks so much... (seemingly it is very important to use Shoemakers lab draw sheet and to specifically use the labs he recommends.. the labcorp leptim level I mention above is well above the level from Quest, the lab recommended by Shoemaker. my daughter had her c4a and c3a run by labcorp and they sent to cambridge not national jewish center and we gave them the correct code on the lab requisition.. but it was not shoemakers lab draw sheet and went to wrong lab.. cambridge.. mine went to correct lab and we used shoemakers draw sheet for my labs.. the leptin draw we made before we realize how careful you have to be)
     
  5. soulfeast

    soulfeast Senior Member

    Messages:
    410
    Likes:
    44
    Virginia, US

See more popular forum discussions.

Share This Page