Guest guest Posted February 11, 2012 Report Share Posted February 11, 2012 Hi Kathleen, It's good of you to find a silver lining in all this! At any rate, I'm so sorry to hear it all. If you're up to it, I have a few more questions for you. What dose were the B-12 shots you took and what type? What is T3 medication? I want to make sure I stay away from it. Regarding finding a savvy doctor to work with our illness, they simply don't have the education unlesss they've been educated and very often by the patient. I find it's hard to find a good doctor that is interested in learning. I know there are some but not in my area. I've been ill for 24 years. During that time my olderst daughther grew up, went off to college, then medical school and became a doctor. I thought to myself having seen, first hand, how sick I've been, she would take a greater interest in the illness; she didn't. So one day I asked her if there was anything in the medical books about cfs. She said there was only about one parhagraph linking it to the Epstien Bar virus. So there you have it. For the most part, they don't have a clue about the illness, or how serious and complex it is. That explained a whoooooooooole lot to me. You're right, we're better off doing our own research. Take care, Gail > > {Moderator: Accidentally hit delete instead of approve on the original post. Here it is on behalf of Kathleen.} > > > Just to let you know, I have been diagnosed with two things.. Mold/biotoxin illness and CFS/ME. Both diagnoses were by top doctors in the field... Dr. Shoemaker and Dr. Cheney. The Fibro and Fatigue Center diagosed me as a hormone patient..not having CFS/ ME and also wanted me to go back to work because they felt I WAS NOT SICK. But I didn't know that at the time that this was their medical assessment. Everything that happened to me happened in three visits ( two months time) I am now in heart failure.. both diastolic and systolic. with severe heart damage.. > > I had been in contact with Dr. Teitelbaumn for over a year prior to going to the Pittsburgh Center, because he was the only one I knew ,at the time , and had been using many of his, as well as others', alternative treatments. He had all the search engines flooded... so his name is the one that always came up. I was on a half year sabbatical that was due to end in January of 08. I left work 8 days early because I was so sick in May of 07. . ( couldn't even make it to the end of the school year) I had been sick seriously since 2005. But I kept trying to find answers... researching and researching on the internet and trying to find treaments that would at least keep me going. I pushed myself to work each day. The summer of 06 I was completely bedbound until I started three B-12 shots a day ,several weeks before the school year. I also would break out into hives anytime I ate anything the start of the summer. I had been doing colonics, which seemed to help me. . I had been ill in early 80's with candiasis from a sick building. I got well with the help of an alternative doctor. In 1991 when I was diagnosed with a twin twin transfusion pregnancy , while in the sick building, I also learned so much from other alternative doctors, the National Health Federation and Maureen Kennedy Salaman.. So I was not new to regular medical care , nor alternative care. > > > > As I was getting a bit better from high doses of Vitamin C to bowel tolerance levels..in October of 2007, I realized that this was something that was helping me. So I continued on. When I saw that I was not going to be better by the end of my sabbatical, I realized in November that I needed to do something even more aggressive, so I would be ready for work in January. Now mind you, I had never heard of this illness.. nor had I ever heard of anyone else being sick like myself. I had no clue that there were others out there sick for 20 plus years... I think that was a good thing, in hindsight.. > > > > Anyways, I went to the clinic at Dr. Teitelbaum's suggeston and Dr. Aldino Pierotti was staffing the center. This doctor was on probation from the state of PA for falsifying credentials. He had received a full year's suspension, but because he pled guilty it was reduced to a $10.000.00 fine, two and a half weeks suspension and course work. He was not able to get a license in Ohio because he lied on that application about his difficulties in two residencies.. one he was fired from. He has also lost his license in Washington DC for lying about his credentials, saying he was board certified when he was not. To make a long story short... the Fibro and Fatigue Centers will take any doctor... whether qualified or not and give them a crash course.. They don't understand what they are doing.. nor the idiosyncracies of the illness. This is what happened in my case. Dr. Pierotto did not have any understanding of what he was doing ... nor any understanding about what the side effects of the medications he was giving. When I told him the hydrocortisone was making me extremely ill, he said I was detoxing. When he gave me the T3 when my free T3 and free T4 levels were at the high end of normal, he did not slowly ramp up the dosage. This is crucial to determining what the body can handle. No he slapped me with hydrocortisone that was making me bedbound with high temps and sore throats and had no idea I was having a reaction.. My last ounce of immune resistance was being compromised and he didn't even know that. Even the social security doctors knew that. And he was supposed to be an expert????Dr. Teitelbaum said he would see to it that he NEVER admininstered medication in that manner again. Dr. Teitelbaum knew what he had done and wouldn't admit it. Dr. Teitelbaum had been warned about using T3 medication by every other CFS/ME doctor that is out there. Dr. Teitelbaum knew this and wouldn't say a word .All they did was give me back my $600.00 for heart failure. When Dr. Teitelbaum asked me to go to another center , I refused. Dr Teitelbaum worked with my me, and my MD brother afterwards. Dr. Teitelbaum had me doing things that were making me much more sick after the heart attack. He would do stupid things like tell me to exercise.. Dr. Teitelbaum didn't have a clue. When I met him he was telling me that I would get better. After I saw Dr. PIerotti and worked with Dr. Teitelbaum after the heart attack , he told me to file for social security. I won it on the first try without the aid of an attorney. Dr. Teitelbaum knew full well that the T3 caused the heart attack and when I asked him afterwards, he didn't say a word. Fortunately for me Dr. Cheney verified what they did as blatant medical malpractice. > > > > The only good thing that the F & F Center did for me.. assured I would be permanently disabled and get social security on the first try without the aid of an attorney.. So you always have to look at the silver lining in the cloud.. > > > > I know of other F & F Centers that have taken loads of money and bankrupted people. They lost their homes trying to get well. And not one did get well. One family member in Atlanta had their mother in detox because they gave her too many medications.. when they warned them upfront that the woman had addiction issues. There are several centers that have had state licensing board sanctions on their doctors from the Fibro and Fatigue Centers. My suggestion.. read and research and get a good doctor that will work with you... And when you start something.. do not start many things at once. Start things one at a time.. see how you react.. The Fibro and Fatigue Centers are business based and push everything and anything. How do you know how you will react to something if you are doing many things at once. > > > > It's unfortunate that these Centers are so money centered and require that you pay upfront for many sessions. Are they serious about getting you well or is there a corporate mandate that requires the doctors to push too much on the patient at one time. I don't care what kind of program they have..... I just feel that unless you trust the doctor from the get go, you are making a big mistake. I knew just as much , if not more than the one I saw. I have worked at this for years and years. I was not a newcomer to alternative medicine. I paid my dues with many illness. I recovered each time. But this time.. I cannot get over the hump.. I have been done in this time.. > > > > So that is my story short and sweet.. Read books and have your doctor read them too.. > > > > Kathleen > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2012 Report Share Posted February 12, 2012 Kathleen, if you had those two diagnosis, why did you go to the FFC? I know your brother, an MD, was trying hard to also help you. Would you agree that the SHINE protocol under the correct supervision is a solid base? God Bless, Sara > > {Moderator: Accidentally hit delete instead of approve on the original post. Here it is on behalf of Kathleen.} > > > Just to let you know, I have been diagnosed with two things.. Mold/biotoxin illness and CFS/ME. Both diagnoses were by top doctors in the field... Dr. Shoemaker and Dr. Cheney. The Fibro and Fatigue Center diagosed me as a hormone patient..not having CFS/ ME and also wanted me to go back to work because they felt I WAS NOT SICK. But I didn't know that at the time that this was their medical assessment. Everything that happened to me happened in three visits ( two months time) I am now in heart failure.. both diastolic and systolic. with severe heart damage.. > > I had been in contact with Dr. Teitelbaumn for over a year prior to going to the Pittsburgh Center, because he was the only one I knew ,at the time , and had been using many of his, as well as others', alternative treatments. He had all the search engines flooded... so his name is the one that always came up. I was on a half year sabbatical that was due to end in January of 08. I left work 8 days early because I was so sick in May of 07. . ( couldn't even make it to the end of the school year) I had been sick seriously since 2005. But I kept trying to find answers... researching and researching on the internet and trying to find treaments that would at least keep me going. I pushed myself to work each day. The summer of 06 I was completely bedbound until I started three B-12 shots a day ,several weeks before the school year. I also would break out into hives anytime I ate anything the start of the summer. I had been doing colonics, which seemed to help me. . I had been ill in early 80's with candiasis from a sick building. I got well with the help of an alternative doctor. In 1991 when I was diagnosed with a twin twin transfusion pregnancy , while in the sick building, I also learned so much from other alternative doctors, the National Health Federation and Maureen Kennedy Salaman.. So I was not new to regular medical care , nor alternative care. > > > > As I was getting a bit better from high doses of Vitamin C to bowel tolerance levels..in October of 2007, I realized that this was something that was helping me. So I continued on. When I saw that I was not going to be better by the end of my sabbatical, I realized in November that I needed to do something even more aggressive, so I would be ready for work in January. Now mind you, I had never heard of this illness.. nor had I ever heard of anyone else being sick like myself. I had no clue that there were others out there sick for 20 plus years... I think that was a good thing, in hindsight.. > > > > Anyways, I went to the clinic at Dr. Teitelbaum's suggeston and Dr. Aldino Pierotti was staffing the center. This doctor was on probation from the state of PA for falsifying credentials. He had received a full year's suspension, but because he pled guilty it was reduced to a $10.000.00 fine, two and a half weeks suspension and course work. He was not able to get a license in Ohio because he lied on that application about his difficulties in two residencies.. one he was fired from. He has also lost his license in Washington DC for lying about his credentials, saying he was board certified when he was not. To make a long story short... the Fibro and Fatigue Centers will take any doctor... whether qualified or not and give them a crash course.. They don't understand what they are doing.. nor the idiosyncracies of the illness. This is what happened in my case. Dr. Pierotto did not have any understanding of what he was doing ... nor any understanding about what the side effects of the medications he was giving. When I told him the hydrocortisone was making me extremely ill, he said I was detoxing. When he gave me the T3 when my free T3 and free T4 levels were at the high end of normal, he did not slowly ramp up the dosage. This is crucial to determining what the body can handle. No he slapped me with hydrocortisone that was making me bedbound with high temps and sore throats and had no idea I was having a reaction.. My last ounce of immune resistance was being compromised and he didn't even know that. Even the social security doctors knew that. And he was supposed to be an expert????Dr. Teitelbaum said he would see to it that he NEVER admininstered medication in that manner again. Dr. Teitelbaum knew what he had done and wouldn't admit it. Dr. Teitelbaum had been warned about using T3 medication by every other CFS/ME doctor that is out there. Dr. Teitelbaum knew this and wouldn't say a word .All they did was give me back my $600.00 for heart failure. When Dr. Teitelbaum asked me to go to another center , I refused. Dr Teitelbaum worked with my me, and my MD brother afterwards. Dr. Teitelbaum had me doing things that were making me much more sick after the heart attack. He would do stupid things like tell me to exercise.. Dr. Teitelbaum didn't have a clue. When I met him he was telling me that I would get better. After I saw Dr. PIerotti and worked with Dr. Teitelbaum after the heart attack , he told me to file for social security. I won it on the first try without the aid of an attorney. Dr. Teitelbaum knew full well that the T3 caused the heart attack and when I asked him afterwards, he didn't say a word. Fortunately for me Dr. Cheney verified what they did as blatant medical malpractice. > > > > The only good thing that the F & F Center did for me.. assured I would be permanently disabled and get social security on the first try without the aid of an attorney.. So you always have to look at the silver lining in the cloud.. > > > > I know of other F & F Centers that have taken loads of money and bankrupted people. They lost their homes trying to get well. And not one did get well. One family member in Atlanta had their mother in detox because they gave her too many medications.. when they warned them upfront that the woman had addiction issues. There are several centers that have had state licensing board sanctions on their doctors from the Fibro and Fatigue Centers. My suggestion.. read and research and get a good doctor that will work with you... And when you start something.. do not start many things at once. Start things one at a time.. see how you react.. The Fibro and Fatigue Centers are business based and push everything and anything. How do you know how you will react to something if you are doing many things at once. > > > > It's unfortunate that these Centers are so money centered and require that you pay upfront for many sessions. Are they serious about getting you well or is there a corporate mandate that requires the doctors to push too much on the patient at one time. I don't care what kind of program they have..... I just feel that unless you trust the doctor from the get go, you are making a big mistake. I knew just as much , if not more than the one I saw. I have worked at this for years and years. I was not a newcomer to alternative medicine. I paid my dues with many illness. I recovered each time. But this time.. I cannot get over the hump.. I have been done in this time.. > > > > So that is my story short and sweet.. Read books and have your doctor read them too.. > > > > Kathleen > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2012 Report Share Posted February 14, 2012 Thank you for this indepth response. Some of it resonates with me---meaning, " pay attention " . Who would you see for your care now,if there were no physical or financial road blocks? God Bless, Sara > > > > > > If you read carefully , you would see that I went to the F & F Center as a first step. I did not know any other doctors in this field.  It was working with Dr. Teitelbaum AFTER  the heart attack that I came to the understanding and realization of his inability to help improve my situation. It was  Dr. Teitelbaum himself......  who directed me to go to Dr. Cheney. I was getting worse under Dr. Teitelbaum's collaborative efforts with my brother. The echos that were done proved it.... My ejection fraction had gone down to 29% ( with low normal 50%) I was being asked to have tests done for a defibrillator or heart implant at that sta ge. Dr. Teitelbaum did not have indepth understanding of this illness, even though he attended yearly group meetings with all the CFS experts in the field. He may be helpful in less severe cases of fatigue, but at the time he did not fully understand MY illness or that his protocol could be harmful. >  > Dr. Teitelbaum asked for my hospital records to be sent to him, I thought it was intended for my care. But I now believe differently. Prior to that time,  I trusted Dr. Teitelbaum implicitly. In fact the sun, moon and stars shone on him , in my eyes. Quite frankly, I believe  Dr. Teitelbaum wanted to know if the F & F Centers could be blamed for the heart attack on the cardiologist's report. That is a very severe comment, but I believe it to be accurate. > > When the cardiologist who did my catherization after the heart attack  asked that I see the hospital endocrinologist, because he felt my heart attack was caused by the T3, I never knew or  understood why he was suggesting it.  ( Remember my free T3 and free T4 levels were in the high normal range prior to getting the T3 from Dr. Perotti) I thought they ( the hospital endocrinologists) were going to tell me to stop everything I was doing because they didn't understand that they were 20 years behind the times.. as Dr. Teitelbaum had told me. I thought I wouldn't get well if I didn't follow Dr. Teitelbaum's protocol. So I declined the very tests that would prove beyond a shadow of a doubt the F & F Center's culpability. Dr. Teitelbaum knew that because he had my hospital records. It was only after the heart attack I started researching and determined the reason for my heart attack. It was Dr. Cheney in Asheville, North Carolina, who confirmed it as blatant medical malpractice and was willing to state it. There had already been a fatal heart attack in Florida with the use of T3. Why I am alive today, I have no clue. >  > Dr. Teitelbaum may be good at mild illnesses of fatigue, but he didn't have the expertise for more severe cases. I am going to be brutally honest,  I personally have talked with at least a half dozen patients that saw him when he was practicing in land  and spent thousands of dollars for his care. They were not helped. They were bombarded with too many treatments at one time. If there was one thing that was troublesome, the patient wouldn't be able to determine it... because everything was done at once.  I also spoke with a disabled patient that lived near his office who  asked that she be included in his studies. He would not take anyone that was disabled. So his studies  were skewed as to not include very ill patients. This alone would tend to make his success rates high. > > As to the effectiveness of Dr. Teitelbaum today, I cannot be the judge. Only one can know by making the appointment and determining whether he has grown in his ability to treat us. Dr. Teitelbaum does have useful ideas in his book,, but they have been in the alternative world prior to his publishing them. I was aware of many of them prior to reading his books. >  >  >  > http://forums.phoenixrising.me/showthread.php?1701-Heart-Attack-from-CFS-Treatme\ nt & highlight=Fibro+Fatigue+heart+attack > > > Kathleen > > Re: FFC -Kathleen > >  > > > > > > Kathleen, if you had those two diagnosis, why did you go to the FFC? > I know your brother, an MD, was trying hard to also help you. > Would you agree that the SHINE protocol under the correct supervision is a solid base? > > God Bless, > Sara > Quote Link to comment Share on other sites More sharing options...
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