What Money Will Buy 1-12-2010

[Kathi]

Fibro &Fatigue Facebook Fans : 9641
CFIDS Facebook Fans: 3004
WPI Facebook Fans: 1812
ME-CFS Community 1261
About MECFS 1036

I reviewed these statistics because I had a heart attack caused by the Fibro and Fatigue Center's protocol. I recently learned another member of this forum experienced atrail fibrillation at the hands of the Fibro&Fatigue Center one year before my heart attack. It caused me to wonder why they didn't change their protocol, knowing it was so potentially dangerous ( or at least monitor their patients with blood tests etc etc.) It wouldn't have helped me, because my heart attack was within one month of starting their medications. It happened that quick. I was floored at the number of fans on Facebook's Fibro and Fatigue Center........ and the possibility of another heart attack or even death. But it looks like their advertising campaign works. It could be leading lambs to the slaughter, like they did to me. I just pray they don't harm anyone else. And it is very possible because you wouldn't know it, unless someone lives and comes forward.

With all the good information out there, such as this site, why does the F&F Center have so many fans???? They have 10 times what is on this site. I guess money talks !!!!Just because you have a white coat and medical degree doesn't give you a license to kill. Nor does it make you more intelligent than anyone on this forum.

Kathi

 

[starryeyes]

I think the F & F Centers often help people who have FMS only, not CFS. CFS often makes us hypersensitive to all kinds of substances. It is criminal that they're harming people and don't seem to be at all concerned about it.

 

[Kathi]

I communicated with Dr. Teitelbaum by email a year before I went to the F&F Center. He was the one who suggested I go there. I did not know of any other doctor that dealt with this illness at the time, because his was the only name that came up when I googled chronic fatigue. Being so sick, and not knowing anyone else with this illness I fell blindly into the F&F trap at Dr. T's suggestion. When I learned that another local person had an episode of atrial fibrillation, I contacted Dr. Teitelbaum a few days ago. He just gave me Dr. John Lowe's book title for helping fibromyalgia. I did not have fibromyalgia.I never told anyone I had fibromyalgia. The F&F doctor misdiagnosed me as a hormone only patient, despite having filled out a 24 page questionnaire telling him differently.He wouldn't let me take off work and use my nearly 100 sick days. This was after telling them that I couldn't even walk when I left work for the summer 8 days early. I had taken 3 B-12 shots a day prior to my leaving. I also did a plethora of supplements. The B-12 shots helped me get off the couch for the previous school year, but it wasn't enough. Does that sound like I was a hormone only patient??? I had to take 20 grams of vitamin C per day to keep the sore throats away. It started helping me to be able to walk. I didn't have a clue what I was walking in to and now I am in severe cardiac heart failure. I contacted Dr. Teitelbaum and he didn't care.........

 

[Kathi]

Perhaps you are not familiar with heart issues. I know I wasn't. The damage that was caused by the heart attack destroyed the apex of my heart. That means it does not work any longer. The medical term is akinetic. This in turn shortens my life because what is left has to work much harder.I think the 40% left has to work much harder. Dr. Cheney tells me it will give out much sooner because of this. So at least I don't expect a long life with this illness. He tells me it will give out. There is a post on here that mentions the 3 leading causes of death in this illness. One is heart failure. The F&F Center has shortened my life considerably because of the heart attack they caused with inappropriate use of medications. Dr. Cheney stands by the fact Dr. Pierotti caused my heart attack with how they admistered the T3 . When Dr. Teitelbaum just tells me I am angry at what happened.............I have to wonder about him. I am in shock because he doesn't take responsibility concerning all this.There is no remorse or restitution concerning any of what happened. Just know if you go the the F&F Center and something happens, it will not be acknowledged. I will die earaly because of what they did and they don't care.

 

[Dolphin]

Very sorry to hear what has happened to you, Kathi.

This might be a bit insensitive but I'm interested in seeing what lessons can be learned.

Were you on other meds at the same time?
I remember I decreased my tricyclic before trying thyroid medication.

Were you on T3 only? What dosage. Was it time-released in any way? I had difficulty finding a compounding pharmacy so I used to cut up the tablets.

 

[Kathi]

If you haven't seen my post on Heart Attack from CFS Treatment, please go the treatment section on this forum. I have a thorough discussion of what happened. I will be happy to answer all questions, if anyone needs to know more.

I was only on hydrocortisone and T3 therapy for less than a month. My free T3 and Free T4 thryoid levels were within normal ranges before the T3 therapy . What were the levels once I was given 100 mcgs of T3?????? Certainly not in acceptable ranges. That is why Dr. Cheney said the strain from the T3 on my LAD caused the heart attack. It actually collapsed.
When it did, no blood got to the apex of my heart. That is where all the tissue damage is. These clinics could be dangerous to your future, if you let them. I trusted that I would get well. That is not going to happen any time soon. If anything, I will die earlier because of the heart being damaged. Heart failure is one of the three leading causes of death in CFS.

 

[starryeyes]

((((((((Kathi))))))))))))))

Thanks for letting us know this information. I am very sorry this happened to you. I've wanted to warn people for years but that just usually makes you enemies on forums but sometimes I still tried to give people a heads-up. It's criminal that the F & F Centers are still allowed to operate. I do know they help a lot of Fibromites but once again, PWCFS need to stand up for ourselves! I can't do it alone but I know we now have people here who would help us do so.

PWCFS need to be warned.

tee

 

[Kathi]

Absolutely Tee..... I feel that is my purpose........not to let anyone else get harmed. If someone is helped by their protocol, I am fine with that, but please do not blame the patient for your protocol problems.Admit to frailties with your protocol.

Kathi

 

[glenp]

Thank you for being so brave, thus being able to save others. Not many will speak out against a doctor"s wrong doing. Many die because of some of the doctors treatments, "there were complications" I've heard of many unexplained deaths. And for us on here that disappear??

I've read SOOO many posts recommending to supplement thyroid even though levels are normal range. I choose not to supplement above normal blood levels, also with Vitamin D and B12. Many doctors will not say they don't know, they'd rather go blindly and prescribe. Pleez always step back when your doctor has the answers, many are being "killed" with no one knowing. We need to do our own monitoring of blood, its very important

glenp

 

[Dolphin]

If you haven't seen my post on Heart Attack from CFS Treatment, please go the treatment section on this forum. I have a thorough discussion of what happened to me. I will be happy to answer all questions TomK. I was only on hydrocortisone and T3 therapy for less than a month. My free T3 and Free T4 thryoid levels were in normal ranges before the T3 therapy . What were the levels once I was given 100 mcgs of T3?????? That is why Cheney said the strain on my LAD caused the heart attack. These clinics could be dangerous to your future, if you let them. I trusted that I would get well. That is not going to happen any time soon. If anything, I will die earlier because of the heart being damaged. Heart failure is one of the third leading causes of death in CFS.

Thanks Kathi. Will look that up - didn't know you had posted it elsewhere. That's a massive dose of T3 to give to anybody. I have tried a much smaller dose even though my values (except the TSH) were within normal range. Very sorry again to hear what happened you.

 

[muffin]

Get to a Cardiologist to manage this - find a top notch one.

I am so very sorry about what has happened to you. It should NOT have happened. I have never been a fan of Teitelbaum. He seems to be in this for the money and the money only - not like Peterson or Cheney or Klimas. Also, when I see what he recommends it blows my mind. I have shown my conservative Internist the lists of stuff he puts people on and my doctor was a bit taken back as well - and also not impressed with this guy.

I met a very sick CFIDS woman who was seeing Teitelbaum and he had her on so many stimulants that I really thought she was being damaged horribly. I tried to tell her that she did NOT have the energy to begin with because her mitochondria were damaged so pushing the stimulants on a body with no real energy was going to damage her more. She didn't listn as she was so terrified - I understood that part but the stuff Teitelbaum pushes on his patients is, in my opinion, medically damaging and downright dangerous.

I am very sorry this has happened to you. GET to a good cardiologist and see what can be done. Don't just quit and give in. Easy for me right now to say - but, you can't just give up when there is a possibility that something CAN be done - a procedure or medication(s) that may help your heart. My mother has Atrial Fib and is on a bunch of meds and has a pacemaker and has gotten much better over time. She was in big trouble and lost 1/2 her kidney to high BP, etc. because no one bothered to check her BP in her right arm, always the left and so a blockage on the right side was never picked up - thus her BP on her left arm was low or low normal. "Her real BP was in the stroke range and her dr. wanted her to go to the ER via ambulance right then.
So, keep fighting and get to a good cardiologist - and if you don't like that cardiologist then find another and another until you get one that can help. Hugs -

 

[Kathi]

Thanks, Muffin. You are right about Dr Teitelbaum pushing the body with stimulants. There is nothing wrong in supporting the body, but when you push it further than it is ready to go, you do more damage. CFS is an illness where the body is slowing down for a reason. Dr. Cheney says it is slowing down to keep you from dying. When you think about it, he is right. Teitelbaum is pushing pushing pushing. He is treating symptoms and trying to get reduction in symptoms. OK, so you are getting results, but at what cost????????