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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.
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Heart Attack from CFS Treatment

Discussion in 'General Treatment' started by Kathi, Dec 12, 2009.

  1. Kathi

    Kathi Senior Member

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    Pittsburgh,PA
    Esther12, thank-you for your concern. Let's just say the heart attack did nothing to improve my condition, that is for certain. If anything it has been like climbing out of a well with oil slick hands. My EF is now at 35-40% ( 55%-75% normal) , so I am out of defibrillator territory. The left ventricular function is abnormal. The entire apex and mid and distal anterior septum are akinetic. ( don't move) The mid lateral wall is hypokinetic. The mid anterior , mid posterior wall , mid inferior wall and mid inferoseptum are severely hypokinetic. I am in systolic and diastolic heart failure. So what Dr. Pierotti / Dr. Teitelbaum's Fibro and Fatigue Center did was detrimental to my longevity, according to Dr.Cheney. This is really unfortunate because I have always maintained a healthy life style... There was no way I was having a heart attack until I met the Fibro and Fatigue Centers.

    All of this is on top of having CFIDS/ME/ mold/biotoxin illness. I was tested and I have the dreaded genes that do not allow me to detox toxins from my body... 4 3 53.... I have MARCONS , as tested in my nasal passages , which is an antibiotic resistant staff. And Dr. Pierotti thought I wasn't sick.. I was a hormone only patient. If this isn't a case of true medical negligence, then nothing is.
     
  2. Kathi

    Kathi Senior Member

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    Pittsburgh,PA
    Sing, I did go before the CFS Advisory Committee last May10,2011 with the message of what happened to me. I try to speak out when I can...
     
  3. Sing

    Sing Senior Member

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    New England
    What a fighter! Thank you from me and many others, I'm sure.
     
  4. Esther12

    Esther12 Senior Member

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    I hope things improve for you Kathi, and thanks for reminding everyone else of the dangers of following treatment protocols just on the advice of a doctor. It is hard to know what's best with a diagnosis like CFS.
     
  5. Kathi

    Kathi Senior Member

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    Pittsburgh,PA
    Sing your words are very very meaningful to me and I take them to my heart. This illness is difficult enough, you don't need misguided doctors messing it up more.... as they have done to me. Monies are tight and I have seen some people lose their homes because they paid for care at the Fibro and Fatigue Center , rather than pay their mortgage. If I can alert others, so something like this doesn't happen, then I feel good about that. Keeping this to myself would do no one any good. And perhaps more will be harmed. We are between a rock and a hard place as you say. My brother was a family physician and knew nothing about this illness. He learned from my research and helped his patients through me.

    When I called the Academy of Family Physicians in Kansas they were telling me that doctors weren't interested in continuing education credits in this field. I told them they are misdiagnosing patients right and left and sometimes harming them. It was if I were talking to the wall. But I will continue to help when and where I can. That is why I went to Washington DC.
     

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