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Heart Attack from CFS Treatment

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

  1. gracenote

    gracenote All shall be well . . .

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    involved in a law suit

    Hi Kathi,

    I completely respect your decision. I am only offering my experience in case it might interest you. If you want further information you can PM me.

    I, along with several other patients, was infected with Hepatitis C in a medical clinic run by a very supportive and knowledgeable doctor while getting an IV treatment he recommended. It was through a sloppy error of one of the nurses. We can pinpoint the day it happened. I resisted contacting a lawyer even when everyone else did. Finally this doctor said directly to me that I needed to get a lawyer and file a lawsuit against him and his clinic. There was a medical settlement. This did not harm this doctor or his reputation at all, even though his insurance company settled. There are errors that are made in good faith, and then there are errors that should never happen. This error was this doctor's responsibility but not his fault. The nurse, however, was at fault for gross negligence. As things were settled out of court and there was no trial, a settlement was agreed to but no acknowledgment of wrongdoing was ever stated by the two insurance companies.

    I received excellent (though extremely difficult) treatment for Hepatitis C and no longer test positive. I continue on good terms with this doctor. Also with the lawyer who fought for me.

    As to the personal cost to us physically by being involved in a complex legal issue, you will have to weigh that for yourself. It was anything but easy for me, but it turned out to be necessary and I'm glad I followed this doctor's advice.

    Best to you, Kathi.
     
  2. Kathi

    Kathi Senior Member

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    Gracenote, your presentation of your personal situation is very interesting. I appreciate the time and energy that you took to respond to my concerns over this very difficult decision I need to make. It helps when people give their different views on a subject. It always allows one to get various perspectives and then make an informed decision.
     
  3. dannybex

    dannybex Senior Member

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    Hi Kathi,

    It truly is horrific what you went through, and you're to be commended for speaking out and also for having survived all of this. As Koan and others have said, you are definitely a strong woman! :)

    I don't totally understand your reason for not proceeding with legal action, but my brain is mush. (If you decided to sue the F&F Centers, or more specifically Dr. Pierotti, I don't understand how your PCP would be implicated...all he/she did was give you a referral, not make the treatment decisions???)

    Anyway I totally respect your choices, and can understand not proceeding just due to the stress it probably would cause...not a good thing.

    TAKE CARE,

    Dan

    p.s. Rich points out how he and Cheney agree on this issue in this other thread...you may want to post a reply over there in case Rich hasn't seen your story. Here's the link:

    http://forums.aboutmecfs.org/showthread.php?t=1866&page=3
     
  4. Koan

    Koan Be the change.

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    Hi Kathi,

    I've been in a somewhat similar situation and did nothing for fear of hurting a doctor who, I felt, had acted with my best interest at heart even though they made, what was for me, a costly mistake. So, I think I understand the concern you may feel. I'm not sure my inaction was the right thing to do - I will never know.

    I would suggest only that you have all the facts you need to come to a decision which makes sense for you and feels right. I hope you have good counsel who can talk it through with you.

    I'm sure you will make good decisions if you have good advice.

    You have already triumphed.

    All the best to you,
    Koan
     
  5. Kathi

    Kathi Senior Member

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    What you may have missed in my previous posting is this............

    After the MI, I still needed care for my CFS, in addition to the heart damage done from Dr. Pierotti's care from the F&F Center. My goal was to get back to work. I didn't have a clue how ill I actually was, or the slim possibilities for my full recovery at the time. I recovered from severe illnesses several times over the past 25 years, so I assumed I was going to experience full recovery again. I didn't know how the MI was going to push me deeper into this illness, from all the stress and emotional trauma from my experience at the F&F Center. As I think about it, that is a good thing. In this case, ignorance was bliss.

    I wasn't aware of any other doctors that dealt with CFS during this whole time, other than Dr. Teitelbaum and the F&F Centers. When Dr. T and I talked or emailed after the MI, he suggested that I go to another F&F Clinic. I refused to even step into another center under any circumstances. I felt their doctors were not the experts,as claimed. At that time I only trusted Dr. Teitelbaum, because I thought he had the answers for my recovery.That is what he professed in his books, as indicated by his high recovery rates. I have later learned second hand information from one CFS support group, that Dr. T's clinical studies were not done on disabled patients. I do not know if this is factual or not, but perhaps it accounts why his protocol may work on some people and not others. There are some things in his protocol that are very valuable and I won't deny that fact. I will give credit where credit is due, but there are some tremendous issues that need to be addressed too!!!

    I sent Dr. Teitelbaum my MI hospital records as he requested after the MI, and he intitiated a treatment plan with my PCP post MI. When Dr. Teitelbaum realized he couldn't help me a few months later, he referred me to Dr. Cheney. One of Dr. T's suggestions during this time was that I try to walk. That was the worst bit of advice I could be given. It threw me even deeper into the illness. The E on the end of his SHINE protocol should be dropped immediately for the really ill patient. You know the story as it unfolds up to this date.

    To fight a battle such as this, would bring untold stress to my life. Yes, Dr. Pierotti was as guilty as sin in this case, but perhaps informing this population is my better alternative. If I can save one other person from going through what I went through, then that can be my reward or compensation. In my thinking, the money is not worth the debilitation that would possibly ensue. My health is so fragile and to put undue stress on my health, to the extent a lawsuit would cause, would jeopardize my current health. WHAT would I be giving up, to gain monetary compensation is the question I have asked myself over and over again. My health is fragile, as you all well know. I have heard from numerous sources that a lawsuit is tremendously difficult. On top of this, I listened to Dr. Teitelbaum post MI. This does not make a lawsuit impossible, only more difficult. Due to all these factors, I have chosen a more reasonable path for myself, if I value my health over monetary gains. It's not that I am wealthy, I am not!!!!! It's not that I won't have serious expenses, I will!!! I expected those F&F Centers to come to the plate and do the right thing, without the lawsuit. Dr. Teitelbaum needs to step up to the plate and acknowledge what his Centers did to me and not just provide me with $600.00 in reimbursed care. How does $600.00 compensate for a heart attack and the terrible pain and anguish I experienced. Even with his after care, I did not receive enough compensation for what I went through. I fault him for this, even though I still believe he is dedicated to helping those that suffer. There is no excuse for this behavior, in my belief. If you know that this is the character that he portrayed in my situation, then that is what is important for me to convey. You will see for yourself and know how he treated me, when it was Dr. Teitelbaum that recommended I go to the Center. That is all I can do at this point....... tell my story and let the CFS public do what their heart tells them is best. You ,my CFS/ME friends and cohorts, not experiencing what I went through, is my mission and passion. That is why I am stepping out and telling you the rest of the story.

    I have so appreciated your thoughts and posts. Please do not underestimate what they have done for me. They have added immeasurably to my spirit and strength. I am thankful that I had the courage to talk with you. I am also thankful that there are forums, such as this one, that have enabled me to get my message out, because there was no such forum back when this happened.( or I did not know about it) This being said, I encourage you to financially support whatever forum that you subscribe to or participate in. Cort and others are offering something invaluable to this community. We must take the time to contribute to these groups in order that they may survive and flourish. Even if it is only five dollars, the dollars add up, if we all give five dollars. I mentioned this to Dr. Mikovitz in the summer when they were soliciting donations to WPI. You cannot think of your gift as unimportant. Giving as you are able, will bring blessings in return.

    Kathi
     
  6. Kathi

    Kathi Senior Member

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    I hope this group is not disappointed in me for not pursuing the law suit. There were issues that complicated the situation. Believe me, I am the one who is disappointed more than any of you. I wanted the Fibro and Fatigue Centers to be responsible for what they did to me. They have gotten away with nearly killing me and exacerbating the CFS, but the law is complicated. Life is not fair for sure. The law is not like what you see on TV. We all know what the F&F Center did........they know what they did.............and Dr. Teitelbaum washes his hands of any responsibility. Perhaps your voices will do for me.... what I could not achieve myself. I more than anyone am angry for what they got away with. Since I listened to Dr. Teitelbaum after the MI, it complicates the matter. Never mind that I didn't know of any other physician that dealt with CFS at the time. What choice did I have???? For that reason, it makes my case more difficult. The law thinks that Dr. Teitelbaum's therapy is the problem too. They believe I should have never consulted with him afterwards. However, it was Dr. Pierotti's overdose of medication ( T3) that was the cause of the MI, without question, according to Dr. Cheney. Being called a malingerer by a CFS specialist did more harm to me than one can imagine. I hope that you will understand and support what happened to me in whatever way you can.

    January is the anniversary of my MI. Your words and thoughts would be appreciated.


    Kathi
     
  7. starryeyes

    starryeyes Senior Member

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    I'm not at all disappointed with your decision Kathi. I understand. I doubt I would take them on either. I was wondering though if you have contacted a lawyer just to see what they would say. I can't recall if you said you had or not before.

    Many of us only have enough energy to do what it takes to survive.. eat.. drink... go to the bathroom and try to sleep..so I totally get it if you don't want to sue them.
     
  8. Kathi

    Kathi Senior Member

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    I absolutely did contact a lawyer! I absolutely did have a case. The Pittsburgh F&F Center did cause the heart attack. There is another patient that Dr. Cheney told me about that went to another F&F Center and is in heart failure without the heart attack. They suffer from congestive heart failure. The F&F protocol can be very dangerous to ME/CFS patients. My purpose is to prevent you from going through the same thing that happened to me.
    But you have to make the best decision for yourself. There are different levels of sick patients and different subtypes of this illness The F&F Center lumps everyone into the same basket and treats with one protocol. We don't all benefit from the same protocol. This is where the trouble starts. What can be beneficial to one, may be dangerous to another. Do they know that and treat as such?????? NO, from my experience. The heart is very susceptible to mitochondrial problems as the result of CFS, even without obvious evidence on heart testing. When you give a person T3 without slow incrementations, as they did to me, you set one up for major disaster. There is no excuse for what they did to me. There is no excuse for not owning up to the damage they did. I am in heart failure and on disability. Do they care and have they stepped up to help for what they did to me????? Dr. Teitelbaum told me he cares and that was it. When I asked for help beyond that, he never answered my email. He ignored me. This is where you need to judge for yourself how responsible this facility is to help the hurting. I wonder!!!!!
     
  9. juniemarie

    juniemarie Senior Member

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    Kathi I am so sorry you had to go through such a horrible thing. Its criminal. We do have to be careful of Dr's that are too arrogant or have too much confidence in their abilities without proper information to back up their confidence.
    Not as awful as what you went through, but last year my cardiologist put me on a statin. Within 3 weeks of being on it, I began to degenerate to the point that my family wanted me to see an alzheimer specialist. I was not even able to dress myself. I would try to drive and forget where I was and have to pull over. Went off the statin's and in 2 days was back to normal self. Then I started digging and found out about all the problems with mitochondria and CFS and also what statin's do to mitochondria.
    I asked the doc about it later. Yes she knew that statins could take a toll on mitochondria.........what she did no know was anything at all about CFS and the mitochondria.
    So this was an example of ignorance on her part, and most importantly on my part. But when you have a dr that thinks they know everything there is to know about CFS but they dont, thats the worst kind.
     
  10. Kathi

    Kathi Senior Member

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    Junie, I spent countless days, months and several years on a woman's heart site after the MI. Statins can cause serious damage to people without CFS, let alone those that have CFS. There are countless women, and I suppose men, who cannot take statins. Is this something the cardiologists tell you?? Not that I have heard. I was given 40 mgs of statin by the cardiologist, even when my cholesterol was 119. Go figure. I stopped as soon as I got out of the hospital and never had the script filled. The cardiologist yelled at me and told me to find a new cardiologist if I was going to disobey him. I did leave him. I never needed statins, let alone stents, with a cholesterol of 119. I had trouble trying to figure out why I received 3 stents when I never had any coronary artery disease. The hematologist had trouble believing this happened when I went to see him and called the cardiologist right while I was in his office. The cardio said" I didn't know what to do"

    In your case the damage that could have ensued if you had not quit the statins would never have been realized. That is so scary and it is fortunate that you did your own investigative work. I am happy to hear that your story was resolved with a happy ending. But what would have happened if that wasn't the case??? We never want to even think about it. I always did do my research, but in this case, it didn't work out.

    Yes, the F&F Centers seem to think they have all the answers.( At least the doctor I went to) He knew very little and Dr. Cheney agreed. I presented my case history to doctor Cheney and he said," You must have been very good at what you did in your job" I thought this a wonderful compliment coming from him.
     
  11. andreamarie

    andreamarie Senior Member

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    F&F center in Boston area closed very quickly

    .

    There was an F&F center in the Boston area that closed very quickly. Does anyone know why; it does make me wonder if something happened to a patient
     
  12. JT1024

    JT1024 Senior Member

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    There was an F&F center in the Boston area that closed very quickly. Does anyone know why; it does make me wonder if something happened to a patient[/QUOTE]

    I don't know why but I was a patient at the center for a period of time. One doctor, Dr. Erica Bial, seemed to know what she was doing but she left the center and I'm still not sure where she went. I heard they had another doctor in that office but it was very soon after that the office closed. No answer was given. I had been put on compounded T3 but I don't recall the dosage. I'm glad I'm not on in now.

    andreamarie, do you see someone else in the Boston area? I've been searching for a doctor but have yet to find one. Many will "treat" CFS/FM (I supposedly have both) but not many are up on the latest in diagnosis and treatment. I was just checking into Dr. Jeanne Hubbuch in Newton but I really don't want to go all the way down to Newton if I don't have to. I'm also concerned with all the treatments.

    Please let me know of any good doctors.
     
  13. velha508

    velha508

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    I don't know why but I was a patient at the center for a period of time. One doctor, Dr. Erica Bial, seemed to know what she was doing but she left the center and I'm still not sure where she went. I heard they had another doctor in that office but it was very soon after that the office closed. No answer was given. I had been put on compounded T3 but I don't recall the dosage. I'm glad I'm not on in now.

    andreamarie, do you see someone else in the Boston area? I've been searching for a doctor but have yet to find one. Many will "treat" CFS/FM (I supposedly have both) but not many are up on the latest in diagnosis and treatment. I was just checking into Dr. Jeanne Hubbuch in Newton but I really don't want to go all the way down to Newton if I don't have to. I'm also concerned with all the treatments.

    Please let me know of any good doctors.[/QUOTE]

    Hi JT1024,

    I've seen Dr Jeanne Hubbuch since September. She is ok. I have come up with my own treatment protocol and she is supporting that. Her office is just herself and one assistant, thus it is often difficult to get someone on the phone. Appointments are often delayed, which is good if you happen to be the patient needing additional time - she always gives it. I have also seen Dr Alex Bingham (he is in Wellsley, Visions Medical Center). I have seen him twice - he is familiar with Rich VanK's simplified protocol and the biochemistry behind it. I have found him very interested, responsive and supportive. Also, he works in a practice so there is a full support staff (always someone there to draw blood, nutritionist, and others) I am just starting out and have only seen him 2 times. But if you are in Boston, this is a bit farther away.
    Velha
     
  14. JT1024

    JT1024 Senior Member

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    Hi JT1024,

    I've seen Dr Jeanne Hubbuch since September. She is ok. I have come up with my own treatment protocol and she is supporting that. Her office is just herself and one assistant, thus it is often difficult to get someone on the phone. Appointments are often delayed, which is good if you happen to be the patient needing additional time - she always gives it. I have also seen Dr Alex Bingham (he is in Wellsley, Visions Medical Center). I have seen him twice - he is familiar with Rich VanK's simplified protocol and the biochemistry behind it. I have found him very interested, responsive and supportive. Also, he works in a practice so there is a full support staff (always someone there to draw blood, nutritionist, and others) I am just starting out and have only seen him 2 times. But if you are in Boston, this is a bit farther away.
    Velha[/QUOTE]


    Hi Velha,

    I am actually north of Boston on the NH border. It is a haul regardless of where I go. At this point, I just need to find someone who really knows what they're doing and stays current with treatment options.

    Thanks for the info! ~ Julie
     
  15. Misfit Toy

    Misfit Toy Senior Member

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    That sounds awful and is one of the reasons I would never go there. It sounds like a scam and like a chain...like Chuckie Cheeses. Or Mac Donald's. I am so sorry you have gone through this. Thank you for spreading this word on those F & F Center's. I never liked their name and will now let people know.
     
  16. Kathi

    Kathi Senior Member

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    It is my understanding ,from very reliable sources ,that Dr. Larry Sharp from Texas was once a doctor for the Fibro and Fatigue Centers. He left the Texas Center.
     
  17. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Hi Velha,

    I am actually north of Boston on the NH border. It is a haul regardless of where I go. At this point, I just need to find someone who really knows what they're doing and stays current with treatment options.

    Thanks for the info! ~ Julie[/QUOTE]

    Hi Julie,

    I am also north of Boston on the NH border, in NH though. Contact for info on Drs and a Dr who is supposedly doing some trials at MGH. I believe her primary interest is HIV, but we know these are similar now. You will need your Dr's office to contact them. I have not heard from the MGH Dr, but I know my Dr has contacted them. I was told they are booking Feb. into March.

    FYI
     
  18. Navid

    Navid Senior Member

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    ggingues

    hi g:

    do you know what mgh is trialing. my doc is open to trying anything that has promise vs viral/retro-viral. curious if that is what they are trying since they do alot of hiv work.

    thanks, lisag
     
  19. sleepwalking

    sleepwalking

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    Kathi, I so glad you survived this. Thank you for sharing your story. I have some horror stories of my own as I'm sure others do. It is important to put out the warning about doctors and clinics so others don't have to suffer the same.
     
  20. Kathi

    Kathi Senior Member

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    I survived this ordeal inorder that no one else would suffer what I did at the hands of doctors that have been given a quick cookbook approach to the illness. If I can help you by telling my story, then all is not lost. I may have been the sacrificial lamb on the altar, but at least you can benefit from what happened to me.
     

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