Auto-immunity and Parasites
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March 28, 2010 at 1:34 am
Hello All,
In 1998 I was diagnosed with CIDP after a serurl nerve biopsy. I was started on IVIG and have had a great response.
I began to have new symptoms of dry mouth, and was formally diagnosed with Sjogren’s in November 2002 by a MD who was also a Professor of Rheumatology, and I began to take Hydroxycloroquine. I had started to suffer from many of the well known symptoms much earlier.
From 2002, the intensity of my symptoms accelerated. By 2007, with my eyes requiring eye drops over a dozen times a day, and I would wake up and need to pull my eyelids (which were seemingly glued to my eyeball) up to put drops in my eye. My mouth needed to have rinses and sprays many times a day. My joints were hurting one after another.
What really made me alarmed however, was when my lungs started to feel bad- like I had inhaled sawdust or ground glass in them. I was told that I would do fine with cortisone or chemo agents, but my eyes were sore all the time, and given what I read as the prognosis on this, nothing seemed too promising. I was not going to go on Chemo agents unless there was no alternative.
I have had a lifelong interest in science. As I suffer from MS, I was intrigued as to why the developed world has had an epidemic of auto-immune disease. My conclusion that the best explanation is that our good hygiene has prevented our immature immune systems from being exposed to the same organisms that all of our ancestors developed over the past millions of years- that is, we are too clean.
I went to a foreign country, and ended up getting an infection of hookworms and human whip worms. There have been no long lasting side effects from this treatment, and my problems with breathing, dry eyes, and dry mouth have all but vanished.
This is an experimental scientific treatment, not something I made up on my own. You can read a more detailed article on that is called the Hygiene Hypothesis: http://en.wikipedia.org/wiki/Hygiene_hypothesis
If the Hygiene Hypothesis is true, then by exposing the human body to the right organism, a vast improvement in health should take place, at least in some diseases. Sjogren’s may not be ideal for this, but though these studies are just beginning, such different diseases such as: Crohn’s Disorder, Asthma, Ceiliac Disease, MS, Ulcerative Colitis all have strong evidence indicating that they may be strongly controled or even put into remission by the use very small numbers of harmless parasites or even their eggs.
If anyone is interested in discussing this, feel free to write me or call at 503 949-1162. I live on the West Coast of the USA.
Since the passage of the new health care bill, we may look at lifetime limits on benefits, and my IVIG is horribly expensive. I will begin to look at how much I can lower my IVIG dose in the future.
Cal
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March 28, 2010 at 7:02 am
I should have stressed the point of my previous post-
I hope to see if I can reduce my dose of IVIG for my CIDP as my parasite infection should have had some effect on my immune systems ability to cope with the CIDP.
I must admit to being somewhat nervous about getting my dose of IVIG reduced as I spent 4 years not being able to walk with a CIDP related vascular dysfunction. The problem is called Erythromelalgia.
Erythromelalgia and Raynauds are the only two temperature related disorders. With Raynauds, the extremities turn cold and white or blueish when exposed to cold temperature.
In Erythromelalgia, the extremities turn red and warm when heated. The pain is often characterised as “burning” and are releived by cooling or elevation. For me, the pain was very bad. The redness generally affects the soles of the feet, or palms of the hands, or ears at first. It can eventually cover the whole body and affect the internal organs in a few cases. I was in the worst group.
About 50% of people with Erythromelalga have Raynaud’s as well.
The Erythromelalgia Association has a website that goes into the diagnosis and treatment of the disorder. The disorder is caused often by tissue destruction within the body. CIDP, MS, Sjogren’s, cancer, AIDS, and a large number of disorders can cause the problem. I had the first three on the list.
Best wishes,
Cal
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March 28, 2010 at 10:15 am
Hi Cal,
It’s Dawn! So………..glad you came on to tell your story. Your info about the red/burning hands feet was very interesting, some people on here have described those symptoms at one time or another so I will remember the name you supplied. Do you feel my friend (worms) took care of the erethromyalgia (spelling) and the Raynauds? By the way, I made contact with a boy, well now 18 on the “other” site, his name is Will. He lives near me and sees a Dr. Qadir at a hospital a couple of miles from my home. I guess Qadir was on the original research group w/Weinstock, Elliot and Fleming. He is a published gastroenterologist in the journal of gastroenterology. Anyway he is allowed to have the whipworm from the fda. It sounds like Weinstock gets them in Boston and then he sends them to quadir here in Illinois. The boy has only taken the whip worm eggs for 2 weeks for his uc and said he already notices a difference. We did make contact withj our peds gastro after the naturopath. He was not entirely comfortable with some of the data from the tests he ordered because MD.s do not use those tests or labs. He did agree to give us the nystatin for the leaky gut and he read my info about our friends and the hygiene hypothosis and candida. Now that I have3 found quadir a local Dr. who happens to be at a hospital near our gastro, maybe I can get Quadir to talk to him. Our gastro wants to learn about the leaky gut and worms for chrons etc. So maybe it could be a win win for all. Will gave me the $amount for the worms, it was something like 4050 euros which I think was like 5100 dollars, I forgot. Is that how much you paid from the other “source” these come from ovamed I suspect. Thanks for writing, you will be our source of info regarding being able to wean down from the ivig. Keep us posted!! -
March 28, 2010 at 8:59 pm
Hi Dawn,
I started the IVIG in 1998. The Erythromelalgia (red, warm, burning feet and hands) was helped by Neurontin, IVIG, Magnesium, and cooling.
The Sjogren’s did not respond to anything- but the Hydroxychloroquin made the fatigue feel better, and the parasites gave me a remission in 2007.
I now am certain that the parasites made the difference here as I lost the infection three times due to exposure to nitrous oxide during dental procedures. The Sjogren’s syndrome returned each time I lost the parasitic infection. They worked like magic.
I think that with IVIG in potential short supply in the future with health care rationing on the horizon, parasites will be an option that more and more research will focus on. I feel like that therapy saved my life.
Cal
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March 29, 2010 at 8:01 pm
Do you know how you treated for the parasites? Some things are experimetal still, yet others are ‘approved’ or commonly done ‘off label’. That the critters were there? In killing them off, they could produce some sort of cascade, not directly pegged to a genetic cause, but also trigger a lesser genetic aspect… That stuff is really really hard to trace. Ironically, from all I’ve read? It is like one of those complex U-Tube domino cascades? It seems random at first? But in Your case X+Y+Z was your downfall, in others A+B+C is theirs, It’s never simple?
I’ve no clue about the coming and going of your Sjogren’s? But I do know there is a group out there that is reptutable on that aspect. I have a neighbor with that misery who is an active member. Have you had testing for this? Those folks are the experts as to how to cope with that condition.
Tho their advice about using ‘Biotene’ lotion or spray is useful for dry mouth? It’s an acquired taste? But very useful stuff. IF you can find it in the drugstores- it’s otc.
Hope this helps in ways.. Keep faith and strength and fight it to the best you can!
Other options aren’t as ideal, so go at it. -
March 29, 2010 at 11:58 pm
I can’t help but think 20 years ago there was probably a mom with a child newly diagnosed with CIDP thinking how is she going to get her child through this & the dr said “IVIG”. Then the mom thought the dr was crazy because WHY on earth would she put 10,000 different people’s plasma into her child’s body?
I think people are thinking the same thing about the worms. It’s weird & sounds like something out of a scary movie. But, I’m certain, IVIG sounded weird & scary too.
I think in 5 years the worms will be more widely used. They are in a Phase 3 trial. That’s 2 more phases closer to being an approved treatment than the stem cell transplants are! There is success with the worms! And I’m excited about them!
Thanks for posting about your experience Cal!
Kelly
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March 30, 2010 at 6:22 am
In five years I may get over my aversion. 😮 Then again, maybe not. I spent 3 years in a southern African country doing my best to not get any kind of parasite or other illness. I succeeded despite inhaling half the Zambezi river when I drowned. I hate to think that if I wasn’t so paranoid, if I was one of those people who had faith they wouldn’t get sick walking through stagnant water, I wouldn’t be in this mess I’m in now. :rolleyes:
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March 31, 2010 at 7:44 pm
All that happens with getting the parasites, is that a square of moist guaze is placed on the skin, and a small number (10-30) microscopic enter through though your skin.
The side effects are transient because you do not get hundreds or thousands of parasites at a time, but only a small number, which appear to be safe.
Anyway, the parasites are easy to kill with medicine.
Don’t take my word for it- look up the research that you can find from my links on my first email.
Best wishes,
Cal
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