Trying to Shut Off the Body's Friendly Fire

NY Times ^ | June 5, 2005 | ANDREW POLLACK

[uncle_sharky]

"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.

[pollyannaish]

And this explains how my husband got hemolytic anemia in his 20s and was just recently diagnosed wiht lupus over 20 years later....how?

[olde north church]

I made a statement, I'm not the cause.

[pollyannaish]

I think you're probably right. I'm just glad to be living now, not then.

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 cavalier—not that I know this from experience Ha!—until it catches up with you.

Sorry to throw stones at the messenger.

[Born Conservative]

The first time he was on a respirator for RSV pneumonia, a serious illness for which there is no vaccine.

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.

[Born Conservative]

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).

[slowhandluke]

Take a look at the Marshall Protocol site. The are several people there who have thyroid problems as a secondary issue, who report that their thyroid problems are reduced as the main problem gets reduced.

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.

[slowhandluke]

so I'm familiar with Sarcoidosis.

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.

[slowhandluke]

my husband got hemolytic anemia in his 20s and was just recently diagnosed wiht lupus over 20 years later.

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.

[r9etb]

You are picking and choosing between conditions and genes.

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.

[pollyannaish]

Thanks!

[Donald Meaker]

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.

[olde north church]

I wouldn't call a "dissertation of 6-fingered dwarves" as picking and choosing. It was as legitimate a choice of an example as curly wings, blue eyes/brown eyes, etc. Perhaps you would prefer if I did a comparative database of species specific genome lists.
Diabetes is no different than any other genetic condition/disorder. It doesn't operate outside the rules dominant/recessive expression. You are deliberately misinterpreting the information I am providing because it doesn't fit within your agendal thimble.
Honesty is the key to understanding.
More information on regarding lack of familial history genetic disorders, for those who wish to remain current...
the following excerpt is from
http://www.mdausa.org/publications/gen_inhr.html
How can a disease be genetic if no one else in the family has it?
This is a question often asked by people who have received a diagnosis of a genetic disorder or who have had a child with such a diagnosis. "But, doctor," they often say, "There's no history of anything like this in our family, so how can it be genetic?" This is a very understandable source of confusion.
Very often, a genetic (or hereditary) disorder occurs in a family where no one else has been known to have it.
One way for this to happen is the mechanism of recessive inheritance. In recessive disorders, it takes two mutated genes to cause disease symptoms. A single genetic mutation may have been present and passed down in a family for generations but only now has a child inherited a second mutation from the other side of the family and so developed the disease.
A similar mechanism occurs with X-linked disorders. The family may have carried a mutation on the X chromosome in females for generations, but until someone gives birth to a male child with this mutation, the genetic disorder remains only a potential, not an actual, disease. Females rarely have significant symptoms in X-linked disorders.
Another way for a child to develop a dominant or X-linked disease that's never been seen in the family follows this scenario:(bold mine) One or more of the father's sperm cells or one or more of the mother's egg cells develops a mutation. Such a mutation would never be detected by standard medical tests or even by DNA tests, which generally sample the blood cells. However, if this particular sperm or egg is used to conceive a child, he or she will be born with the mutation.
This scenario isn't rare.
Until recently, when parents who didn't have a genetic disorder and tested as "noncarriers" gave birth to a child with a genetic disorder, they were reassured that the mutation was a one-time event in a single sperm or egg cell and that it would be almost impossible for it to happen again.
Unfortunately, especially in the case of Duchenne dystrophy, this proved to be false reassurance. We now know that sometimes more than one egg cell can be affected by a mutation that isn't in the mother's blood cells and doesn't show up on standard carrier tests. Such mothers can give birth to more children with Duchenne dystrophy because subsequent egg cells with the Duchenne mutation can be used to conceive a child.
In a sense, these mothers actually are carriers - but carriers only in some of their cells. They can be thought of as "partial" carriers. Another term is mosaic carrier. It's very hard to estimate the precise risk of passing on the disorder in these cases.
It's very likely that this kind of situation occurs in other neuromuscular genetic disorders, although most haven't been as well studied as Duchenne dystrophy. For example, more than one sperm or egg cell could pass on a dominant mutation to more than one of a parent's children. Or, in a recessive disorder like spinal muscular atrophy, a child could inherit one mutation from a parent who's a full carrier, and then acquire a second genetic mutation from the other parent, a mosaic carrier. Standard carrier testing wouldn't pick up any problem in the latter parent.

[riri]

I agree with that theory.

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.

[riri]

Interesting. I think it is important to remember HIV and Hep C. Both diseases took quite some time to isolate the bug, if I am correct. In fact, in certain circles there are still arguments regarding the HIV bug.

But certainly, Hep C took years before they found the actual virus and gave it the name of Hepatitis C.

[From many - one.]

Thanks. Even knowing it's pre-internet gives me a timeline to work with.

[Donald Meaker]

I worked there 1983-84. good luck.