Posted on 06/05/2005 1:20:38 PM PDT by neverdem
ROXANNE PEREZ had never really been sick in her life until, at age 27, the roof began falling in. During a Fourth of July weekend at the beach in 2000, she was rushed to an emergency room suffering from convulsions. In the months after, she had blood transfusions and her spleen removed. Then, in 2001, she suffered a heart attack that left her heart permanently weakened.
Ms. Perez, who lives in San Antonio, had to give up her job, her home and car and move in with her parents. Now 32, she suffers from frequent fatigue, made worse when she goes out in the sun, and takes 25 different drugs. She said she could never have children.
"I was at the prime of my life and it's like a bomb fell on me," she said.
The attack was the physiological equivalent of friendly fire. Ms. Perez has lupus and hemolytic anemia. Both are autoimmune diseases, in which the person's immune system, meant to defend against germs, instead directs its fury against the person's own tissues.
There are at least 80 autoimmune diseases, ranging from familiar ones like rheumatoid arthritis, psoriasis, multiple sclerosis and Type 1 diabetes to more obscure ones like pemphigus vulgaris. They affect 5 to 8 percent of the American population, or up to 23.5 million people, say estimates from the National Institutes of Health. Patient advocacy groups often give much higher estimates, and there is evidence that the incidence of some of the diseases is increasing.
Most of the victims are women - many, like Ms. Perez, in their childbearing years. There are at least eight women for every man who has lupus, scleroderma, thyroiditis and Sjogren's syndrome. Women also outnumber men, though not by as large a margin, for multiple sclerosis, rheumatoid arthritis and inflammatory bowel...
(Excerpt) Read more at nytimes.com ...
"Since asthma is also a TH-1/auto-immune disease..."
I've never heard that before, and I'm hypothyroid, which is another TH-1 issue. You make me wonder if there might be a cure-all.
I made a statement, I'm not the cause.
Sorry, a little too touchy about writing off people who aren't perfect. I really do have a thicker skin than that. I would never have guessed how much illness can throw at a person over the course of a lifetime.
And it's all too easy to be cavaliernot that I know this from experience Ha!until it catches up with you.
Sorry to throw stones at the messenger.
There is a vaccine for RSV called Synagis, but due to it's expense (IIRC, about $2000/100mg), it's reserved for high risk babies (preemies, those with heart or lung problems, etc.). It's actually an immune globulin (pooled antibodies from donors) as opposed to an "active" vaccine (a killed or weakened organism which stimulates the body's immune system to produce it's own antibodies). Here in Pennsylvania, we give it from November to April (when RSV is at it's peak). As I understand, RSV season is different in various parts of the country, so the months in which Synagis is given varies. As for it's cost effectiveness, $12-14k over the entire RSV season is a drop in the bucket, compared to the cost of a NICU or PICU stay for RSV. As for Synagis, it's a monthly shot into the muscle; much better than it's predecessor, Respigam, which was given in a monthly IV infusion over several hours.
I'm a nurse in a Pediatric clinic, and one of our physicians is a Pediatric Rheumatologist, so I'm familiar with Sarcoidosis. We currently have a pre-teen who has been battling it all of her life, and is currently doing well on Remicade (although she is also on chronic Prednisone).
My experience with sarcoid is that any injury I get becomes a sarcoid infection. As the immune system goes to work to repair things, it leaves little clumps of sarcoid scar tissue. So, I tend to get tendonitis or carpal tunnel from any bang to a joint, I've had eyesight lose to a retinopathy, severe pain from sarcoid inflammed muscles, an Irritable Bowel Syndrome diagnosis, depression, and high fever over an extended period, insomnia, skin rashes. All of those are improving. The fevers and skin rash are gone.
From my experience and my impression of the experiences reported on the MP sites, it seems that which auto-immune disease you are diagnosed with depends somewhat on the underlying bug and somewhat on whatever organ(s) the immune system carries these bugs into.
Also take a look at the page that lists sarcoid symptoms. It's rather long, and shares a lot of symptoms with lupus and other auto-immune diseases. An awful lot of the things that I'd assigned to the just-getting-old-faster-than-I-want category are listed there.
Well, I'm not a health professional, but I'm very intimately familiar with Sarcoidosis, though I really rather give up that distinction.
and is currently doing well on Remicade (although she is also on chronic Prednisone).
Yeah, I thought I was doing well on prednisone too, until it started taking 60mg/day doses to keep the fevers away. If I ever had to go to 80, I think my wife would have had to shoot me in self-defense, or put me out of my misery (a jury would have been justified in accepting either defense).
Neither remicade nor prednisone is a cure. Prednisone is likely to eventually give her diabetes, and osteoporisis and other problems. I was at the edge of both, and then got a central serous retinopathy in one eye, which is very much not a good thing. The retinopathy might have been caused by sarcoid, but it went away when I weaned myself PDQ off the prednisone to start the Marshall Protocol. After 22 years of going downhill, I'm now moving uphill.
Please, see the brochure at the sarcinfo site quotes the NIH Access Study to show that long term use of immunosuppressants like predisone or remicade do NOT improve the situation. Trevor Marshall has identified the bugs, the mechanisms the bugs use to hide in the immune system, and how to bring them out into the open and kill them. The bio-chemistry is spelled out in the various papers referenced on the sites.
If she is a pre-teen, she's not even 1/2 the way to where I was after 22 years of sarcoid & prednisone use. The 'remissions' I had kept getting shorter and shorter, the troubles more and more.
I hope your physicians have open minds, but it would be unusual. The experts I'd been going to and getting prednisone would not read the MP research, nor bother giving it a try. I found a doc in single practice who was willing to give it a try, after all it's a simple antibiotic protocol. However, I don't think he announces the fact at any professional meeting.
The funny thing is that using Remicade for sarcoid is an off-label use, but it doesn't cause scorn the way that suggesting the use of the Marshall Protocol did at the infectious specialist office.
I wish I knew what else to say here. The few people I have contact with who have sarcoid are older, and I can write it off as their adult judgement when they don't pick up on the Marshall Protocol, I had read it and waited until I was almost blind in one eye before I decided it was do-or-die time. But kids .... it's real hard to accept that it's in somebody else's hands and this kid might not get well. -- But it is. Take good care of her.
I don't know anything about hemolytic anemia, but for the lupus you should read my other posts on this thread starting with 13 and 21. There is an underlying infection for lupus, and there is a way to kill the bugs. The bugs were just very hard to find, and are hard to kill, but it looks like it can be done.
No, I'm not "picking and choosing," I'm talking specifically about diabetes, about which your assertions are categorically incorrect.
But speaking of "picking and choosing," I see you defending your ignorance on diabetes with a dissertation about six-fingered Amish dwarves... Pretty pathetic.
Thanks!
Sorry, the research was done long before Al Gore Jr.'s invention. I only know about it because of a briefing I got when I worked at Pt Mugu back in 1984.
Scooping the mud out of a tidal creek created a lagoon with interesting changes in salinity. The various species sense the changing salinity, and are only active when favorable (for them) salinity is in their area. That causes them to self segregate during mating, strenthening the salinity selection characteristic.
That is one of the best evidences I have ever heard of punctuated equilibrium, as that variant of the evolutionary theory is called.
Take for instance MS, another AI disease. It is not fully uncommon to find clusters of MS. Family members, neighbors, childhood friends, etc. To me that in itself supports that it must be environmental in nature or a particular bug that infected these people and they, for whatever reason, were suseptible.
But certainly, Hep C took years before they found the actual virus and gave it the name of Hepatitis C.
Thanks. Even knowing it's pre-internet gives me a timeline to work with.
I worked there 1983-84. good luck.
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