Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
Determined to paper the Internet with articles about ME, Jody Smith brings some additional focus to Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance on Aug. 8, 2017 ...
Discuss the article on the Forums.

Fearing for my life. I don't know what is going on. Mold now? Please help

Discussion in 'Addressing Biotoxin, Chemical & Food Sensitivities' started by skyfall, Jun 25, 2016.

  1. skyfall

    skyfall

    Messages:
    59
    Likes:
    42
    I have posted here a few times before and I seriously feel like I am losing hope of ever getting well again. About 2 and a half years ago my life took a turn for the worst. I lost a baby and everything went downhill from there. I had also had a root canal around this time. I was certain this was the issue after researching, and I had the tooth removed and checked underneath for any infection which they did not see.

    Over the past 2 and a half years things have declined. I went from starting with two symptoms (Light sensitivity to indoor lighting-almost like my brain can't process it and everything just looks off), and constantly feeling drugged/poisoned 24/7. It never goes away.

    Finally got an igenex test that was cdc positive for lyme and igenex positive. Diagnosed with lyme disease and started antibiotics. I could not tolerate them at all. I would get so bad head wise with head pressure and other issues that I went to the ER many times and they couldn't find anything. I felt like I was dying on antibiotics, and my doctor kept having to stop me on them. This didn't seem like a herx, because it straight up lasted for weeks. Every antibiotic we tried would give me some crazy reaction and I couldn't even get out of bed or walk in a straight line.

    I decided to seek care elsewhere because many were leaving my doctor as she prescribed so many drugs at once for different things and it just seemed too much, and I felt like something else was going on. A friend recommended another doctor who I saw.

    This doctor is very into the Shoemaker protocol for mold, and ran all labs on me for mold and diagnosed me with mold. He said I don't have the bad lyme gene, and he doesn't even believe that lyme is my main problem and doesn't particularly like igenex (note this doctor isn't a doctor who is like a regular doctor and doesn't agree with chronic lyme), most of his patience have chronic lyme, but he thinks igenex are over sensitive.

    So after all these labs come back he starts me on welchol and wants me to test my home for mold. We didn't do csm because I have gallstones (although they aren't causing me any symptoms), and he thought welchol would be more gentle.

    The first day of welchol I got severe burning around my chest area. I thought it was kinda odd but I thought maybe it is just heartburn. Day 2 and 3 were okay, but day 4 I felt so off balance, dizzy, and could barely walk in a straight line (kind of like what the antibiotics did to me). I am always off balance, but it makes it x10 worse, and I had the worst nausea that lasted for 2 days.

    I checked in with my doctor and he said it is weird I am reacting so badly and he doesn't really know why, and he wants me to switch to activated charcoal. Has anyone else has craziness like this? I just don't know what to believe anymore. I feel like I am slowly dying and I honestly don't know what the hell I have at this point. I can barely function, my balance is so off I walk like a drunk person. I honestly feel so depressed and I can't ever see myself getting well. I just feel like I am too far gone.
     
    MeSci, Hutan and Mel9 like this.
  2. Mel9

    Mel9 Senior Member

    Messages:
    417
    Likes:
    982
    NSW Australia

    The problem, as I see it, is that you did not perservere with antibiotics against the Lyme bacteria (Borrelia)
    If I were you I would find a better LLD who could help with the herx reactions. Feel very sorry for you with all this confusion and pain
     
    MeSci likes this.
  3. Esther12

    Esther12 Senior Member

    Messages:
    8,449
    Likes:
    28,522
    To me, it sounds like these more alternative, speculative treatments are doing you more harm than good, so I'd stop them. Only do things that make life easier for you imo. There will always be people willing to take your money and claim that they can help your health, but with CFS, very few can be trusted.

    Sorry to hear that you're struggling, and hopefully things will improve for you soon.
     
  4. Forebearance

    Forebearance Senior Member

    Messages:
    561
    Likes:
    351
    Great Plains, US
    Yikes, @skyfall . Your situation sounds really tough. I am so sorry you are going through this.

    So you have enough abnormal results on Dr. Shoemaker's usual lab tests that your doctor thinks you have mold poisoning? I guess the next step would be to test your home with an ERMI, like your doctor says.

    When people are really poisoned and really sensitive, all kinds of unusual reactions can happen. I've confounded doctors before too. Lyme and mold poisoning can cause similar symptoms. I have heard of people losing their balance and feeling nauseated from mold poisoning.

    If I were feeling as bad as you are, I think I would try to change my environment. If I could afford it, I'd go stay a few nights in a non-moldy hotel. Or sleep in a tent in the back yard. Just something different to allow my immune system to have some kind of a break.

    Or even spend some time outdoors in a park that is someplace higher in altitude than your surroundings. Like on top of a big hill or a mountain. I know these are just temporary suggestions, but sometimes one's brain works better if one can get a break and then one can think of what to do next with a clearer head.

    Have you had exposures to heavy metals or chemicals in the past? Are you downwind of some wildfires that are being put out with flame retardants?

    You know, there are some things that soak up toxins that are gentler than csm and Welchol. You could use soluble fiber or pytosterols. Some people who are really sensitive eat oatmeal or an apple for super gentle soluble fiber.

    Please don't give up. I feel like there is always hope.
    I hope you and your doctor will be able to figure it out and that you will start to feel better soon.
     
    SueJohnPat, xena, Christopher and 4 others like this.
  5. skyfall

    skyfall

    Messages:
    59
    Likes:
    42


    Thank you so much for getting back to me. Yes, pretty much all of my Shoemaker labs were off. I don't know if this means much to anyone but I can post them here.

    C4a: 9695
    C3a: 174
    VEFG below 31 (Didn't specify range)
    TGFB1: 4120
    HLA genes showed mold susceptible
    MM9: 738
    ADH: <8

    I am testing my home currently. I am just confused about the whole lyme/mold thing and if I have bother or neither, or just one. It is so confusing, and I really feel like I have lots going on.
     
    Forebearance, MeSci and Misfit Toy like this.
  6. Misfit Toy

    Misfit Toy Senior Member

    Messages:
    3,241
    Likes:
    6,723
    USA
    I know some of Shoemaker's protocol is so difficult to tolerate. Many people can't do it. That is what I know. I know many don't like him.

    Lyme is an awful disease and antibiotics can make people so sick. When I was really sick with a root canal gone bad, mold, candida and mycoplasma, I used charcoal and bentonite clay. Loved it. It worked. Charcoal is awesome, but you will need something to help you go to the bathroom because it will back you up. Some magnesium.

    I have no words of wisdom. I just wanted to say, I feel for you. It's so awful to get sick suddenly. You have no idea what is going on and it's like you are on a wild goose chase. I remember those days well....I am still there, but for different reasons.

    Thinking of you...
     
    Last edited: Jun 26, 2016
    Forebearance, alkt and Mel9 like this.
  7. skyfall

    skyfall

    Messages:
    59
    Likes:
    42
    Thank you so much. What charcoal did you take? Did it help you get better? I haven't heard of people not liking Shoemaker. I wonder why?
     
  8. Dufresne

    Dufresne almost there...

    Messages:
    873
    Likes:
    1,125
    Montreal
    If you're CDC positive for Lyme by western blot, that's pretty solid. I don't think the too sensitive argument holds up.

    For what it's worth Shoemaker has said that the patients who get worse on binders are usually those that also have Lyme.

    Many with biotoxins have to turn down the inflammation before they can use binders.

    I believe there's an order of operations for Lyme/moldies. I think the first move is to optimize diet and environment. You can significantly reduce inflammation with these measures alone; as in cut it in half, or better. This then makes the binders more tolerable. And when you feel mostly stable on the binders, then you go after the infections.

    Most find a low carb diet can help the detox/herx inflammation. As can a more alkaline diet. Fish oil can also help with the inflammation.

    Bentonite is a good binder and also on the milder side. Dr Cheney suggests it.

    Garlic is a good antibiotic and works on candida and parasites too.
     
    Forebearance and Mel9 like this.
  9. Mel9

    Mel9 Senior Member

    Messages:
    417
    Likes:
    982
    NSW Australia



    I am in the third week of pulsing antibiotics for Borrelia. I had horrendous herx reactions until I took my doctor's advice and used two products whenever herx was a problem:

    1) Basica Active (alkalising mineral formula) manufactureris Protina Pharm. GmbH (Germany)

    2) and only when extremely disabling: dexamethasone (0.5mg) but I need from 2 to 4 tabs. This is taken only on one the day per week when I take my 'pulsing' antibiotic.

    By doing this, I find that I can, indeed, tolerate antibiotics and am getting steadily better.
     
    Dufresne likes this.
  10. barbc56

    barbc56 Senior Member

    Messages:
    3,652
    Likes:
    5,006
    For Informational Purposes:

    Dr. Shoemaker has been sued, reprimanded repeatedly and eventually lost his medical license which can only be reinstated by undergoing two years probation to be reinstated. So instead he retired.

    Some of the reasons he lost his license:
    • Selling online bogus medical tests.
    • Diagnosing and treating patients without seeing them.
    • Fraudulent website.
    • Using diagnostic codes for conditions patient didn't have
    • Ordering of tests by using diagnostic codes for conditions not documented in the patient records.
    • Failing to document his rationale for treatment decisions in patient records.
    • Prescribing medications in a dangerous manner.
    Yet he continues to do what he was doing before and his website is still active.

    But here's the kicker. He now makes money by "certifying" medical personnel, mostly NDs and alternative ptactioners to be able to carry on his work which got him in trouble in the first place.:bang-head:

    However, there is speculation that the latter is being investigated.

    So proceed at your own risk.

    Yes mold may cause someone to be sick but better to see a physician who specializes in allergies. This guy is making money off of sick patients and selling a protocol that has not been verified scientifically and does not even make medical sense.
     
  11. Esther12

    Esther12 Senior Member

    Messages:
    8,449
    Likes:
    28,522
    I didn't know all that, but just what people were saying about his work did make me worry a bit. Best wishes to everyone in this difficult situation.
     
    barbc56 and Mel9 like this.
  12. Valentijn

    Valentijn Senior Member

    Messages:
    14,281
    Likes:
    45,816
    His "research" into HLA types and correlations with chronic illnesses is of shockingly poor quality, and badly oversold.
     
    Esther12 and barbc56 like this.
  13. Forebearance

    Forebearance Senior Member

    Messages:
    561
    Likes:
    351
    Great Plains, US
    I know Dr. Shoemaker is far from perfect, but I do think he genuinely wants to help sick people. And I think that his accomplishment of figuring out the chain reaction he calls chronic inflammatory response syndrome in response to biological neurotoxins is brilliant.
     
  14. osisposis

    osisposis Senior Member

    Messages:
    389
    Likes:
    231
    I went to Shoemaker, I couldn't tolerate CSM or sorbital, it made me even sicker, I stood up and fell over straight sideways and luckily a chair was there to catch me. Shoemaker was not happy when I reported that I couldn't tolerate neither and when I told him it was probably because I had developed a severe allergy/food intolerance ( see allergy article I posted today) to corn ( high frutose corn surup, in both) after a moldy house exposure, that was the end of that likely because the thought was than that allergies are not involved in these mold exposures. didn't even get a report, and actually the ones that end up with allergies (autoimmunity) on top everything else may be the sickest of all, I have just recently been diagnosed with anaphylaxis to mold extracts,( this also played into bad reactions to some antibiotics) may want to find a allergist/immunologist who does "specific" Immunogobulin testing to molds and yeast, maybe first a regular allergist who does intradermal skin testing for many molds and mold mixes. I have the reactive airways/severe asthma to go with it. symptoms immediate and delayed and yes cause brain effects, stomach effects, plus. not the whole picture of what that moldy house did to me but a part of it. I have horrible balance issues. inner ear issues likely.
     
    Valentijn likes this.

See more popular forum discussions.

Share This Page