Recent content by Heather H.

  1. H

    trichothecene poisoning or ALS

    Time is running out for my husband. His pain level is now off the scale, both shoulders feel like they are dislocated, his legs are always alarming cold and discolored and swollen. Every doctor blew us off because of the ALS and ignored the fact that I was now showing similar symptoms from time...
  2. H

    trichothecene poisoning or ALS

    I finally have some good news! We have found a Dr. who listened to us about the toxin in my husband's blood, and that he MAY NOT have ALS. What happened was that blood tests were done on him and it was discovered that he has very low levels of vitamin D. Several months ago I was told that I have...
  3. H

    trichothecene poisoning or ALS

    I called several infectious disease doctors but they refused to take his case because of the ALS.
  4. H

    trichothecene poisoning or ALS

    No, I really wish he was.
  5. H

    trichothecene poisoning or ALS

    That would be the case but since ALS is a death sentance, there is no reasonable treatment that clearly improves patient's condition.
  6. H

    trichothecene poisoning or ALS

    The "doctor" who diagnosed him with ALS, who say him walk after 5 treatments, says that this is all rubbish. You husband has ALS and that is it, he has 5 years to live so get used to it, there is no toxin, the other doctor is an idoit, he is not the head man like him at Vandi. Yeah, but he is a...
  7. H

    trichothecene poisoning or ALS

    Tried that, but this stupid code mix up is stopping everything. Since a Doctor says he has ALS and there is no cure or treatment for it...what is a medical necessity for him? Appeal a death sentance? What is medically urgent in a person with ALS? There is no cure so nothing can be done, except...
  8. H

    trichothecene poisoning or ALS

    Believe me we are trying. The Doctor who found the toxin cannot believe how the Dr. at Vandi is treating this, and saying that he never refered him to us. The good news on that(we thought) is that I have his handwritten referal on the back of the card of the Doctor he now claims not to have sent...
  9. H

    trichothecene poisoning or ALS

    The problem is this. The Doctors write the order with the wrong codes. They say that the plasmapheresis treatments are for the ALS, which it is not, it is for mycotoxicosis and the removal of the toxin trichothecene. Soooo... the insurance company refuses it because they correctly say that it is...
  10. H

    trichothecene poisoning or ALS

    Our first dr. was at Skyline but he was unable to figure out what the problem was, called it Clonus, Foot Drop, among other small things. My husband started to have fevers of 105-106 with no reason why. Then the pain started to get horrific and he began loosing his balance and falling. My...
  11. H

    trichothecene poisoning or ALS

    A funny thing happened on the way to the doctors... The Neurologist said that he knew of a doctor who was doing some research in the field of trichothecene poisoning or ALS. What was there to loose right, my husband is going to die so why not see this guy. THAT doctor ran the blood tests that...
  12. H

    trichothecene poisoning or ALS

    I may have been. I have been told that I have RA and Peptic Ulcer Disease. I have lost about 26 pounds and I hardly eat anymore, have no intrest in food and nausea. They won't test me for the same thing because because they don't believe the toxin is there in the first place. They would to...
  13. H

    trichothecene poisoning or ALS

    My God! Yes it is the same doctor and the same place! You will have to spend all day there going from room to room to see every doctor under the sun, will be told of devices that will be a big help but that they cannot provide. Everybody will be soooo cheerful-"and how are you doing today?","is...
  14. H

    trichothecene poisoning or ALS

    Thank you. I need help.
  15. H

    trichothecene poisoning or ALS

    My Husband was told that he has ALS and had 5 years to live. Later it was discovered that he has the toxin trichothecene. After 5 rounds of plasmapheresis he was ABLE TO STAND UP AND TAKE A FEW STEPS. But(for some reason I cannot fathom) the doctors said that was NOT AN IMPROVEMENT but a "fluke...
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