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01/10/2010 02:02 PM

TTP by area?

obscure010
Posts: 5
New Member

Hi all, My name is Joe, I came down with ttp about 4 years ago and I've been doing great ever since I got out of the hospital.

Im wondering if there is any place I can look to see if there are specific areas that have a higher number of TTP cases then others and if anyone has already done this research? I got sick about 4 months after 9/11 and I lived down by the world trade center. I just think it would be interesting to see if there are any pockets of the disorder in and around that area or if there was a spike in numbers there after. Obviously, it's me trying to find a reason and probably never will. But I figured what the heck. I checked the CDC website but couldn't find anything.

I hope all of you are doing well and getting through it. I know it was the hardest thing i've ever gone through and I'm still dealing with the psychological after effects 4 years later. I do have to say a shrink helped me out a lot and I highly recommend it. I just wish I had seen one sooner.

Anyone with any info, please post it. it would be much appreciated.

Thanks

Joe

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01/11/2010 09:51 PM
alice28rmc
Posts: 63
Member

Dear Joe:

As near as I can tell from this site there doesn't seem to be any localized areas for this disease. I've corresponded with so many on this site and they are all over the country and even talked to one lady whose friend and her are in Australia. It is a horrible disease and has traumatic results for the care giver as well as the patient. My husband had a very long seige with it of over a year and has been left with some problems since. but really for all he went through he is doing very well. I developed post traumatic stress syndrome from all we went through but except for when he goes for labs which I insist is about every 2 to 3 wks.(part of my stress thing) also his platelets have been gradually going down each time but still in safe level so far. There were months in all of 2008 that we didn't know if he was going to survive this thing. I do know for a fact that when I joined this group in Nov 2008 there were 7 people on this site and as you can see there are 46 now. Plus my husbands Hemo Dr is seeing more cases all the time. Some thing is triggering it but it seems to be different things in everyone. Like you do wish an answer could be found why???? I think there may be a common denominator but haven't run across it yet. I'm thinking that maybe because most of our medications are manufactured in China and India that there is something they use in the manufacturing process that may be causing the TTP to manifest itself. Don't know could be wrong but many more cases have developed since we sent our manufacturing of medicines and medications out of the U.S. Just a thought off the top of my pointed little head. alice28rmc


01/12/2010 10:08 PM
totoks
Posts: 59
Member

Hi Joe,

Hamburger Processors(Cargill Meats is a large company but not the only one)are not changing their ways and are having recalls all the time of E-Coli infected meat. They pay the law-suits and keep on doing the same thing. It is now thought that you can't cook the E-Coli out of the meat. Many gets HUS or TTP from the E-Coli.

The side effects of many medications are TTP or HUS. I think it is in the chemical make-up of the medicine and not in the processing. The drug companies know of the side effects. They keep making the meds and paying the law-suits. Tylenol products, Cipro (antibiotic), Plavix, NovaRing (birthcontrol), quinine and that is just to name a few. Bet ya saw ads for some of these on TV the last time you watched it.

In the USA the number of cases of HUS and TTP have increased drastically in recent years. Back during the Jack In The Box 1993 E-Coli outbreak it was all over the news. Today outbreaks and recalls are kept quiet. Recalls don't seem to include 100% of the infected product. Also don't forget that people are dying of HUS and TTP that have never been diagnosed, so therefore are not included in the stats on the disease.

I watched a program on CNN a year or so ago about the spinach E-Coli outbreak. They said the spinach growers haven't changed a thing. They just waited for the uproar about the recalls to go away and started sending spinach back out to land in your grocery store.

Cargill Meats has been quietly paying some of Stephanie Smith's healthcare. She is suing for 100 million and Cargill is saying it's not their fault. The news of the lawsuit disappeared as fast as it appeared.

I think if every case of HUS or TTP was on the nightly news the American public might start asking WHY? and changes might happen. But lets face it, the Pharmaceutical companies are making big bucks off their products and the lawsuits aren't really hurting their bottom line. Medicine and Healthcare are about dollars these days and not about people's health. 50% of American children are on medicine these days---WHY?--we need to demand and answer.

Short of raising your own food and herbs, I'm not sure how we can protect our families.

I'd like to see a map showing the number of cases and location of the cases.


01/13/2010 07:48 AM
mem7291

Welcome Joe! I'm a fellow New Yorker and lived there during the 911 tragedy but not by the World Trade Center. I moved to South Florida in 2006 and then got TTP in 2008. My cause is unknown. I think we all are looking for that connection as to what caused it. And it's frustrating when you can't find it. I don't know about you guys but when I hear those commercials saying that the drug they're hawking might cause a "rare but potentially life-threatening condition" called TTP..I want to scream! People have no idea of the ramifications of this disease!! It's only "rare" until it happens to you. If they said cancer then it would get people's attention. But TTP? "What is that?" They don't tell you there's no cure.. just treatment until God willing you're in remission. And we all know what that treatment entails. I was recently in the hospital for stomach issues and to my surprise the woman across the hall had been there 21 days with TTP! What are the odds of that? I joined this group in August of 2008 and like Alice says, there was a handful of us and now look. I tried getting Oprah to do a story on us, but my emails went unanswered. Until someone that the world deems important gets this, we are a silent minority and information will be limited if not stifled. Totoks, if that map exists, I'd love to see it to! Maybe we can start something here with the members we have. We have at least 46 people who have/had TTP or that know of someone. What do you guys think?

01/15/2010 12:16 AM
Judy27
Judy27  
Posts: 54
Member

Hello everyone,

I live in Texas---I had TTP/Hus ---no one knows why! I had just made a out of state trip to Tennessee about a week before I got this stuff---I had also had a rotator cuff tear surgery a few months before it hit and was taking Naproxen --- I still don't know what caused this horrible condition! My doc said maybe E coli? Maybe someday we will know where it is coming from --cause it seems to be happening to alot of people now --- Goodness, PLEASE someone give us an answer so we can warn others! In the spirit, Judy


01/15/2010 04:40 PM
obscure010
Posts: 5
New Member

Hi all, thanks for all the replies! Well, first I'm not so sure it has anything to do with meat. I was vegan for 18 years before I was diagnosed. I decided after I was released from the hospital that I was going to learn to live life which now included a cheeseburger every now and then, though it does a number on my belly. I did find out that I am allergic to heparin through the process which caused H.I.T. which landed me back in the hospital for an additional month. I completely agree that people need to start recognizing this disease exists, because not every hospital can treat it. Not to mention, the mental stress and the financial burdens that ensue. maybe someday someone will find the answers we all are looking for. If anyone does stumble on hotspots that might have a higher TTP ratio then others, please post!

Thanks

Joe


01/15/2010 09:31 PM
totoks
Posts: 59
Member

We are such a mobile society today, we might not be able to pin it down to area. I too had traveled through 4 states in the week before landing in the hospital. I was eating out of restaurants and eating motel breakfasts, not one of which was checked. I was also taking Tylenol Cold medicine, the box of medicine was not checked either.

My first hospital stay says I had E-Coli but when I tried to find out why I wasn't on the E-Coli register in one of the 4 states, I was told the lab never determined it was E-Coli. If you get E-Coli your name is supposed to appear on a list in the state you live in.

I got HUS/TTP during the time of the pepper and tomato E-Coli outbreak. I understand it was all over the news while I was in ICU but I don't remember being asked if I had ate either of these foods. Colorado was one state I was in and so was the outbreak at that time, but I don't remember eating peppers or tomatoes there. I did eat hamburger there.

Not all cases of E-Coli become HUS but I'd like the figures on that. I'd also like the numbers on how many cases are drug induced and how many are ideopathic. I think more cases are being called ideopathic. Everybody makes money on ideopathic except those of us who have it.

Joe, did you get the bad Heparin? about 3 years ago they did a big recall on heparin because the number of allergic reactions was going way up. Come to find out there was a problem at the factory where it was being made. If yours can be tracked back to that, you might get some help with the financial burden.

Oh how I wish for answers. I don't want to panic everytime my grandkid has a hamburger, or a loved one takes a pill. I just don't want anyone else to get this. I was a meat and potatoes person before all this. Now I eat mostly fruit and veggies; my stomach likes me better that way. I eat fresh spinach and try not to think of it as a possible enemy.

Judy, can we live on chocolate?...I've never heard of it causing HUS/TTP.

The weekend is here, so lets live life to the fullest; we've already faced death in the face.


01/17/2010 11:55 AM
Judy27
Judy27  
Posts: 54
Member

HEllo-----------

Oh yes we can give the chocolate diet a try! I have already started! Smile Hope you have a great Sunday! In the spirit, Judy


01/24/2010 04:38 PM
obscure010
Posts: 5
New Member

I'm all for a chocolate diet! Yum. I'm told that it's common that people can be allergic to heparin. So who knows. Has anyone organized a meetup for people in their area with this disease?

Be well

Joe


01/24/2010 07:22 PM
Judy27
Judy27  
Posts: 54
Member

Hello,

I can't find any organized metting for TTP /HUS support groups in my area---even the cancer center I go to doesn't know of any! I asked my doctor about a "group meeting" and he smiled and said " you are only the second person I have ever seen with this disorder! " So this site is the only palce I have ever gotten to talk to others that even know what TTP is!!!

Hope y'all have a nice week! In the spirit, Judy

PS have any of you guys taken the H1N1 shot? I am not sure what to do ---I have been told I should take it by one of my docs then the other one says I don't think you need it! It cost 19 dollars thru the health department ( cost doesn't reall matter though--the big question is --DO I REALLLLY need it??" What do you guys that have had TTP think????

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