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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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    I went to the Fibro and Fatigue Center in Pittsburgh. Within 3 visits ( 2 months) and 1 month on medications, I suffered a heart attack. I am in heart failure as the result. To tell you how serious this is, I won disability on the first try without the help of a lawyer. That is unheard of in CFS cases. This doctor was not experienced in the field of CFS as promised by the F&F Center. He misdiagnosed me as a hormone patient, despite my filling out a 24 page questionnaire detailing how I needed 3 B-12 shots a day in order to make it to work. I explained I had been exposed to chemicals and had pushed myself for nearly 2 years. I nearly collapsed my last day of work and was on sabbatical before seeing him. I was a gradual onset and pushed until I couldn't stand up anymore.

    Dr. Pierotti was on probation with the Pennsylvania Licensing bureau for a year and fined $10,000.00 for passing himself off as a board certified ER doctor at Bloomsburg Hospital during his stint with the F&F Center. This doctor is not allowed to have a license in Ohio. Dr. Teitelbaum said he would see to it that medications were NEVER administered in this way again. Instead of gradually increasing my T3 dose, Dr.Pierotti gave me 100 mcgs off the bat. He also gave me 100 mgs of pregnenolone , which Dr. Ray Sahelian from California, said can cause atrial fibrillation at high doses. I was experiencing symptoms of thyroid storm at my last appointment and no vitals were taken. This doctor also told me when I couldn't take his hydrocortisone, which immune activated me with a sore throat and high temperature for a week, that I was detoxing or had the flu. The drug script says that these symptoms are serious side effects of hydrocortisone. He never even knew that.

    The fact that I suffered the heart attack as the result of a Fibro and Fatigue doctor has been verified by Dr. Cheney. (I have also been diagnosed with CFS by Dr. Cheney.) The cardiologist in the cath lab didn't know what to do and put in 3 drug eleuting stents in the absence of disease, which shouldn't be done. So now I am burdened with 3 drug elueting stents when I didn't need them because I never had coronary artery disease. This has also been verified by Dr. Cheney.

    The only thing I received from the F&F Center was $600.00 in reimbrusement for the payments I gave them. I also was reimbursed for a noninsurance covered test in the amount of $300.00 because I requested it. A total of $900.00 for heart failure, which has been in defibrillator zone, is all I got. Stress exacerbates this illness, so we all know that I have been pushed further into the hole by all these unnecessary circumstances. Dr Teitelbaum wanted me to go to another F&FCenter, but I refused. He worked for a time with my PCP and then told me to go on to Dr. Cheney because my EF was only 30%.

    The doctor was totally irresponsible in my case management. Dr. Pierotti also wanted me to go back to work , despite the fact I had been unable to even walk only a few months earlier. The secretary yelled at me for being a malingerer and the doctor would not allow me to use my sick days, which totaled nearly 100.They told me all I deserved was a FMLA. ( insurance only coverage) This is my horror story and I don't know if it translates into all the F&F doctors being bad. But I think this story needs to be told in the interest of how it was handled and my results. You need to know the REST OF THE STORY ,as the saying goes.

    I never knew about CFS or any other doctor that treated CFS cases. I found Dr. Teitelbaum to be caring , but the doctor staffing the Pittsburgh Center was anything but caring, compassionate or understanding. He was the antithesis of Dr. Teitelbaum.
     
  2. Andrew

    Andrew Senior Member

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    Hi Kathi. I'm sorry you had such a horrible experience. But I'm glad you shared this with us. Especially the details about the medication. This helps others pinpoint possible problems in their treatment.
     
  3. JMK

    JMK

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    kathi! I am so very sorry for what's happened to you!!! Thank you for sharing. I have been going to the Pittsburgh FFC for about a year-though there is, of course a different doctor there now. I have cancelled my last couple of appts. though because I've continued to get worse. They act as if I'm some sort of oddity and claim that I am a "rare case" and insist that most people improve significantly. What a load of BS. I hope that Dr. Cheney will be able to help you.
     
  4. Kathi

    Kathi Senior Member

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    Thank-you so much for being so kind!!! I was concerned that this post might not be well received in light of its negative position. But it is the honest truth, which needs to be told so someone else doesn't get hurt. If I can prevent someone else from going through what I went through, I will tell my story. It has taken me a long time to be able to open up with what happened. My heart has been damaged as the result of F&F care and they have done nothing to help me. Dr. Cheney did so much when he validated what happened. He said what happened was nothing less than blatant medical malpractice. Dr. Cheney also said he had been telling Dr. Teitelbaum that the T3 was going to harm someone and Dr. Teitelbaum kept telling him that they give very little T3 to their patients. (100 mcgs of T3 at one time is not a little bit of T3.) As you may or may not know, T3 cannot be regulated by the body. Dr. Pierotti even said as little as 2.5 mcgs can make the difference between doing well and doing poorly. If that was the case.......then why did he administer 100 mcgs off the bat?????

    You are not an exception at the Pittsburgh F&F Center. Their treatments can be dangerous and our community needs to be well advised of this possibility. I will discuss this matter with anyone that wants to know more or has questions. Perhaps they are dealing with a different illness than what I have, because they couldn't even diagnose me correctly.

    Dr. Pierotti is now medical director of an Anti-Aging and Vitality Center in Pittsburgh. He is still dealing with hormones and he is not certified in anti-aging medicine ,as of yet. Will he harm someone else is my concern??? Dr.Pierotti told me that T3 therapy was standard of care in the ER with heart and trauma patients. This is not true under any circumstances, but Idid not know that. He also said he had the best care rate of any ER physician. If I am an example of his best of care, I think this doctor has psychological issues and can't see reality. He most definitely did not know how to diagnose me correctly, which should be a concern of anyone that walks into a F&F door.
     
  5. fresh_eyes

    fresh_eyes happy to be here

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    Hi Kathi, welcome. Your story is quite shocking. I'm so sorry that happened to you! Have you considered taking legal action?
     
  6. Lisa

    Lisa Senior Member

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    Yikes! You should definitely be getting the word out as much as you easily can about your experience.

    I forget who posted it, but a few months back someone said how they saw an advertisement for people who wanted to make money. Something along the lines of - "Want to make easy money? We will train you to become a CFS specialist in just two weeks!"

    I hope you're finding some help with your new doctors.

    Lisa :)
     
  7. Koan

    Koan Be the change.

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    Kathi,

    What a terrible, terrible story. A cautionary tale for all of us. Thank you so much for having the courage to share it. I'm with Fresh_Eyes regarding considering legal action. If you have consulted a lawyer, make sure he knows that you are posting and what you are posting. If you have not yet done so... maybe make a phone call and find out if there is any down side to posting.

    Thanks again, so much!
     
  8. JMK

    JMK

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    Kathi-I am so glad that you've shared your story! I would like to know more about Dr. Cheney's opinion on T3. The Pittsburgh FFC also has me on 100mcg T3, so I am finding this quite alarming.
     
  9. glenp

    glenp "and this too shall pass"

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    thank you for your bravery



    Thank you so much for posting this. I think there are other stories out there also, some patients not here to tell. Many are afraid to post anything negative against their doctors

    glen
     
  10. caledonia

    caledonia

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    Thanks for posting your story. I have heard other horror stories about F&F in various locations, but I think yours is the worst.

    If it was me, I would be suing his @ss for malpractice. If not for yourself, then to keep him from hurting others, which you said is your intention for posting here.

    I agree with consulting a lawyer and also ask about the legal implications of publishing this online.

    Since there are others who have been hurt, maybe some kind of class action lawsuit is in order.
     
  11. Kathi

    Kathi Senior Member

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    After the heart attack, I was asked by Dr. Teitelbaum not to do anything in regards to Dr. Pierotti. He stated many patients were being helped at the F&F Center and would not have adequate care if I were to have him removed from the facility. Also Sue Hrim from corporate headquarters called several times and did the appropriate "damage control" to assure I wouldn't harm them in any way. At the time I was unaware of any other physicans treating this illness and complied. (Where was public education about this illness and why when I googled the worldwideweb did only Dr. Teitelbaum's name come up???) I have met many others through email who have gone to a F&F Center and were less than thrilled with the results. They felt the physicians were less than thoroughly knowledgeable concerning the illness.
    Perhaps if Dr. Teitelbaum is medical director, he should be educating the doctors that work under him to insure proper care is given. According to Dr. Teitelbaum, he would see to it that medication was never administered to anyone in the way it was administered to me. Mmm was there a problem in the way that it was adminstered to me, and if so, why aren't you accepting responsibility for it now????

    When I recently reported to Dr. Teitelbaum the results of my visits with Dr. Cheney , and asked why he hasn't contacted me in nearly a year to ask how I was doing, he only responded that he was concerned about me.( We had emailed for nearly a year before I went to the center, at his recommendation I also attended a seminar in Pitttsburgh where Dr. T spoke. He had me convinced he knew what he was talking about) Dr. T asked me if he could put a complimentary letter concerning his third edition book on his website and if I would also put it on Amazon .com. ) When I explained by email that my illness had been exacerbated by the effects of Dr. Aldino Pierotti's treatment and the financial burdens would be significant now, he had nothing to say and didn't reply. This is all the more significant in that since 1984/85, I have been able to pull in and out of this illness several times, according to Dr. Cheney. This is the third time I fell into this illness, which this time resulted from chemical exposure and stress. My first bout resulted from a sick building that I worked in in the 80's. People died from cancers at such a high rate that our teachers' union had the place investigated. Others of us suffered from ME/ CFS symptoms. I have exercised, juiced, pursued alternative treatments and supplements since the 90's, used probiotics since the 80's and studied and researched all to my betterment. Now one doctor pulls the rug out from under me with his rogue theories about how to help CFS with a massive dose of T3 not properly ramped up.

    The second bout with this illness came when I nearly died from a twin-twin transfusion pregnancy in 1991. I was filled with infection from experimental treatments which caused my twin girls to die shortly after birth from infection. Their blood supply was not routed properly and they removed fluid from my body ( as much as a 2 liter pop bottle and a half to keep me from going into labor) My organs were shutting down, I had eclampsia, I was filled with pneumonia and had death marks in my face, according to my doctor. I delieverd these babies on a cooling blanket because I was so ill from medical treatment. I had been in such pain throughout this pregnancy and really suffered. I recoverd through my personal research and study, but it took nearly a year. Four months after delivery, I struggled to get to work every day barely able to make the 45 minute journey home. Once home, I had to crawl into bed in order to make it to work the next day. If I was a malingerer, I would have quit then and there.

    The crux of this issue is this.......the illness has been woefully neglected for over twenty years because of the CDC and their efforts to suppress help to our community with knowledge , research and financial support. Why was Dr. DeFrietas's work discredited, when it was right on target in the late 80's and early 90's??? Why in 2007 was the medical community only offering antidepressants for an illness that is possibly as severe as leukemia, lymphoma and HIV/AIDS????? If this illness proves to be from a retro virus, how did it jump from mice to humans??? Was there an experiment that went awry when mutating it from mice to other animals??? Did it jump to human beings by accident.

    With this being said, I don't fault the F&F Centers for trying to help suffering people. I just think they are misguided or perhaps their methodology helps those that are less ill. If you are really ill, their methods are pushing a body faster than it is prepared to go and causing more damage. I do not fear anything that the F&F Center could do to me because what I say is the honest truth and they know it. If I can help even one of you that suffer, then that is my goal. My fate has been sealed at their hands and unless a miracle from God happens, I must bear the burden of what happened to me alone. But then I am not alone because already you have sympathized with my plight in just a few short hours. I thank-you for your concern and well wishes. Perhaps some have received the care that they need from the F&F Center and got well. This did not happen in my case and all sides must be presented, so those of you that need different care can make a wise and prudent decision to get help elsewhere. I am not a basher and trying to put the Centers down. There is a verse from the bible that goes like this " My people parish from lack of knowledge" I am giving you that knowledge and hope you make the best decision for yourself. My one lament is that the F&F Center did not stand up and take responsibility for what happened to me.
    This is my belief and I will stand by it.
     
  12. Catseye

    Catseye Senior Member

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    kathi

    I'm so sorry this happened. I think you should sue the heck out of them for all you can get. Teitelbaum, who I used to really admire, has become just another doctor: trying to get rich off treating symptoms, even though he may use supplements. Most cases of CFS have intestinal issues as their central problems and I see now that Teitelbaum does not aggressively go after the guts, or at least not since last time I looked. So this means he either doesn't know and is incredibly ignorant and stupid, or he knows he will sell more supplements by leaving it as is. Doctors cannot treat LG with modern medicine effectively. And when they try to and wreck you, they should pay.

    Did anyone do a simple CDSA (Comprehensive Digestive Stool Analysis) to evaluate your intestines? A regular medical doctor is not going to be able to interpret one but I would hope a CFS specialist is trained to. Pubmed is full of studies showing the guts are key to several metabolic systems. Doctors and drug companies don't care because they dispense medicine only and right now, medicine is too hard for CFSers to bear because their livers are messed up - the methylation cycle is not working. All drugs need to be detoxified by the liver. You should get a real health care practitioner instead of a drug salesman. I fixed my gut and most of my symptoms melted away. See the genius thread under the gut section and "what you need to do and why" in the introduce yourself section for exact details.

    I found a doctor after reading about the protocol at beatcfsandfms.org. The doctor I'm using is Dr. Farr from becomehealthynow. He is not a medical doctor, that's why it works. Since we started, we have cured my hypoglycemia, dysbiosis and made my periods start to come 28 days again instead of 23. And I've been able to start exercising with beginning yoga classes. I still have some issues due to heavy metal poisoning that we will be working on next. All we have used is diet and supplements because our bodies use those, not drugs.

    We can manipulate the body quite effectively with diet and supplements if you get the right expert who can adequately assess what relevant tests you need and interpret them to see exactly what foods you need to avoid and what metabolic systems need supplemental support. It's all been very scientific and successful, it just takes a long time. It took a year for the dysbiosis to clear up, that's how bad it was. I've been able to watch progress on each successive CDSA test. I bet that is your problem, too.

    Get a lawyer and make them pay. Forget their "people won't get adequate care if you sue" ridiculous defense - you'll be saving others is more like it. I wish you the best of luck.
     
  13. Kathi

    Kathi Senior Member

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    Wilddaisy and others, I hope that my story helps our community. I am aware of others that have not been able to take their medications. There could be many more of you not certain why you are feeling worse from visiting this facility. Perhaps this information will help.
     
  14. starryeyes

    starryeyes Senior Member

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    Kathi-- Hugs for all you have been through and thank you for telling us about this. I always thought those F & F Centers were evil... now we have proof. Dr. Teitelbaum's protocol does help some people but I don't think they usually have ME.

    I hope you can Sue the pants off them.

    tee
     
  15. Koan

    Koan Be the change.

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    Dear Kathi,

    I don't know what to say about what happened to you. You must be a very strong woman to have survived all you have been through.

    I keep staring at the keyboard trying to find some appropriate words for a situation like yours but can find none.

    Your courage and the steady way you tell your story, matter of factly, without unnecessary drama or hysteria, are eloquent proof of your stability and good sense.

    I am so very sorry that all of this should have happened to anyone. To somehow find the courage to pull yourself through one terrible nightmare only to find yourself in yet another one is beyond the beyond.

    Thank you for sharing your story here. Again, your strength is quite stunning.

    with admiration,
    Koan
     
  16. Kathi

    Kathi Senior Member

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    Koan, your kind comments have touched me. I never expected such overwhelming appreciation from this community's members for telling my story. It truly has warmed my heart and literally taken me by surprise. I had no idea how my words would be received. Your encouragement has touched my soul and given me confidence in knowing I did the right thing by sharing my devastation at the hands of one F&F doctor.


    I have already spoken to two people that were told by the F&F Center they were the reason they weren't well. You cannot blame the patient, if the protocol is not successful. How demeaning and disrespectful.

    We all go through life with trials and tribulations of one sort or another. I have had more than my fair share, but maybe my strength will give others strength to fight their own battles too. If some good can come out of all the bad that happened to me, then at least there is a reason for what I went through. This heart attack really knocked me down, but support and strength from Dr. Cheney helped me to find my first step to healing. When a doctor will openly acknowledge the malpractice that you suffered, I can't begin to tell you the healing that began. That took courage and I appreciated it. Your kind words and heartfelt messages have surprised me. When you take a step such as I did, you just never know what will be at the other end. I never anticipated such thoughtful words from you.
     
  17. Kathi

    Kathi Senior Member

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    Just to mention, I did have a stool analysis done by Dr. Cheney this summer, which found no pathogens. Early on in my illness ( the third bout) , I found that every time I ate, I got hives. It didn't seem to matter what it was, if food went into my mouth, I got huge orange sized hives. At the same time ,fatigue began to be debilitating and I had difficulty walking any distance. I really didn't have a clue what was happening to me or that I had an illness that was called CFS. My gut, in my thinking, was severely problematic, so I restarted colonic therapy, which I had done after the twin -twin transfusion pregnancy mishap. It helped immediately. I think it helped ward off severe disability for a bit longer. But I didn't know to stop pushing myself. If I would have known that, perhaps this whole unfortunate situation could have been avoided with the F&F Center.

    When I was on sabbatical, after having pushed myself to the point I couldn't stand up, one thing that I found to help, besides the B-12 shots, was high doses of ascorbic acid taken throughout the day. My bowel tolerance level was 25,000 mgs. I can vividly remember violently herxing for 24 hours the first day, BUT it seemed to turn the tide in my illness. I kept the C dosage just below bowel tolerance level and began improving slowly, but surely. My research on Dr. Alfred Klenner's work with Vitamin C in the 30's and 40's resulted in my use of C. Dr. Klenner used vitamin C to cure 33 different diseases, including polio. Dr. Klenner even helped his son, who was critically ill at one point, with high doses of C. Dr. Klenner came before Linus Pauling, for those of you that are familiar with Dr. Pauling. The C helped me, but we are all different and you must find what works for you. Dr. Pierotti, the F&F doctor, told me the C couldn't be working and just laughed at me. I knew differently and couldn't believe he didn't have a clue!!!

    Another treatment that I found helpful.............heparin.
    I believe heparin keeps NF Kappa B in check. Heparin was given to me during the heart attack and catherization procedure. My sore throats went away once the heparin was given. I couldn't believe that I had no more sore throats once given the heparin from the heart attack. I had read numerous articles on heparin's value in CFS, but had not used it prior to the MI. I have used heparin shots since, and they appear to help my individual case.
     
  18. CJB

    CJB Senior Member

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    Your courage and strength of character are unbelievable. I'm just left with no words.

    I'm so glad to have met you here and for all of us going forward with some attention from the medical community. The mistakes that were made with CFS have caused unspeakable suffering and it is my hope that we've finally seen the beginning of the end of that misguidedness.
     
  19. Kathi

    Kathi Senior Member

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    Thank-you for those of you that took the time to review my post. Those of you that posted responses and words of encouragement, I can't begin to tell you what they did for my well being. It meant so much to hear from this community and know that my post was well received in the manner that it was intended. Your words gave me strength to continue to fight my illness and move forward.

    I am sure you are wondering about the litigation that could have potentially evolved out of this case. Dr. Cheney absolutely and courageously stands by his words that Dr. Pierotti of the Fatigue and Fibro Center was the incipitant cause of the MI by giving me too many hormones ( T3 without ramping it up slowly as the body tolerates,and pregnenolone at high doses of 100 mgs) For that I am forever thankful because that support has helped my validation and recovery. I spoke with an expert trial attorney concerning this case and he also feels that Dr. Pierotti was the cause of my MI and that he is NOT a good doctor. (He has participated in cases against him before.) However, because my PCP listened to Dr. Teitelbaum and tried to help me, he could be implicated in the case, if it were to go forward. Even though I didn't know of any other CFS doctors out there to help ,and only had getting back to work on my mind, I was in error for listening to this group and Dr. Teitelbaum. Preceeding forward would implicate my PCP, who was never trained in CFS and followed Dr. Teitelbaum's advise in order to help me get well. I have chosen to let the guilty party go in order to save my PCP from attack. In this case, there will be no justice. The guilty party will be allowed to run free and I will recover nothing from the F&F Center, despite their guilt. Despite the fact Dr. Pierotti of the Pittsburgh F&F Center put me in heart failure, I must choose to save one party who was in no way guilty. I do this with no regret, except for the fact that a very dangerous doctor was allowed to get away with a mistke that nearly killed me.

    Perhaps you won't understand my decision not to proceed forward.......Even though the Pittsburgh F&F Center is guilty, you will not see a court case against them from me. They are guilty and they are responsibile for what happened to me, because Dr. Pierotti was one of their medical doctors working for the Fibro and Fatigue corporation . But how can I implicate a doctor who tried to help me upon the advise of "experts in the field of CFS"
    If I do that, I am harming someone who was in my corner. Thus the chance for me to win something for the harm that was done will never come to fruition.
     
  20. starcycle

    starcycle Guest

    What a horrific story. Really sorry to hear that *anyone* has to go through something like that.

    If it were me, I wouldn't NOT sue just out of some well-meaning but perhaps misplaced concern for some other doctor. Believe me, they can take care of themselves. That's why they have malpractice insurance. If you have a lawyer who thinks you have a case, and getting justice and recompense is important to you, I would encourage you to proceed with some kind of action against the doctors who harmed you. Just think of the other people you might be protecting in the future if action is taken against what appears to be a grossly incompetent doctor.

    If the decision not to sue is because you feel it would take too much out of you and be a burden on your health, of course that is entirely different. In either case, you need to put YOURSELF first, not anybody else. You need to do what's best for YOU, not worry about whether some doctor is going to be affected by it. Like I said, that's why they have insurance.

    And let's be honest: the chances of winning cases against doctors is very much reduced in recent years because of all the political harping about "tort reform," etc. So it's likely that the other doctor or doctors you're worried about wouldn't even be involved. That would be for a lawyer to determine.

    But you were harmed, and that's a fact. So if it's in your wishes and ability to pursue something, please don't let a concern for someone else stop you from what you want to do. Doctors shouldn't be allowed to go around harming people like that with impunity. It's a travesty.

    Just my opinion, but my main point is that you should do what's best for you. If you think it's best for you to let it go, that's your decision too. But don't base it on anyone or anything else but what's in your own best interests.
     

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