Friday, March 30, 2007

Guiding Principles

This second post is a summary of the guiding principles I have discovered in my years since childhood as an autoimmune sufferer and now as a parent of a severely and recently disabled 24 year old son. The Guiding Principles of Autoimmune news are:

(1) Any medicine or technique that helps one autoimmune disease has a very good chance of helping most or all other autoimmune diseases e.g. TNF-alpha inhibitors.

(2) All autoimmune disease is bone marrow disease. Fix the bone marrow. Cure the disease.

(3) Treatment options take too long to get to patients

(4) Clinical trials cost the pharmaceutical companies too much money and have too many exclusion criteria for sick patients

(5) Restrictions to access to the latest autoimmune potential cures should be eased for informed and very ill autoimmune patients who have no other options.

(6) The entire autoimmune community should work together. No more separate organizations and separate research. United we stand . Divided we get no cures. Every patient, friend or relative of a patient and all autoimmune organizations should come together immediately to conduct massive campaign to find a universal autoimmune cure. The AIDS community demanded action and funding. It worked. We should not be divided into associations that advocate for only one condition i.e. rheumatoid arthritis, psoriasis, multiple sclerosis, lupus, Type I diabetes, etc.

(7) The medical profession is generally uniformed and inept when treating immune disorders.

(8) A new medical specialty is needed specifically for the treatment of autoimmune disease, atopy (asthma, allergy, eczema),and immune dysfunctions. It should be created and licensed by the American Medical Association.

(9) Better, more accurate medical tests for immune dysfunctions are desperately needed i.e. genetic tests, cytokine screens, family genetic history, and personal genomes.

(10) The laboratory techniques, the equipment and the innovative new ideas are in place for revolutionary cures for autoimmune disease, asthma, allergy, cancer and infectious disease--only funding is lacking.

(11) Every person who is affected either personally or through a family member has the duty to do everything in their power to influence Congress and wealthy donors to fund these potential cures. Right now! No more delays!

Research findings which have potential to have an impact on autoimmune disease will be summarized in this blog. Topics will include cell death (a good thing), cell proliferation (a bad thing), suppression of arms of the immune system (usually good but can also kill patient), destruction of various arms of the immune system (often good but can also kill patient), immune vaccines and various other potential cures.

Personal News for family and friends
Paul had a good day today. He was able to whisper a few words. He heard Margaret come home from shopping. I did not. His hearing is still acute. He was able to indicate that he heard her with two gestures. He "pointed" at her chair and than at the floor. (He cannot really point any more as he cannot make a fist. He kind of sweeps his arm). His gestures spoke volumes. I was now alerted to go to the garage and help her unload the car. He slept only six hours last night--too much neck pain to sleep longer. The tendons in his arms hurt all the time as they are under active attack by his immune system. He is currently trying to nap.

(Maladapted B cells are churning out huge amounts of tendon specific antibodies which find attack and label his tendons as "bad". T effectors (a kind of white blood cell) "see" the antibody labelled tendons and join in the attack. They actually take "bites" out of the tendon. This is exactly the same process that happens in every single autoimmune disease. The only difference is the target of the activated maladapted B cells and their antibodies. The target is myelin for MS, joints for RA, intestines for Crohn's/colitis, etc.)

I seem a bit better today. My intestines do not hurt as much today. No stomach flu symptoms or spasms so far and its almost 4:30 in the afternoon. It is a good day.

By the way for anyone with IBS, IBD, Crohn's, colitis or any other intestinal difficulty, I recommend ordering VSL#3 over the Internet. It saved my life four years ago. I tried a new probiotic Margaret found at the grocery store made by Ethical Nutrients last week. It really made me sick. If this were a colitis post I would give you the brutal details but let's just say it caused great bloating and gas and other much more unpleasant symptoms. For a person with an inflamed set of intestines, bloating and stretching of the intestinal walls is about the most painful thing that can happen. Imagine someone kicking you over and over in an already badly purpled and bruised shin. You get the idea.

I called the 800 number on the bottle and was told by the very nice people at Ethical Nutrients about my symptoms. They assured me that they received calls about bloating, gas and stomach noise a lot. It usually lasted two weeks. I should just keep taking their probiotic and not mix it with any other. Eventually I would feel better.

I do not think I would have lasted two weeks. I went back to good old VSL#3. Sorry Ethical Nutrients, no matter how nice you folks are, I am not taking anything that caused that much pain.

This morning I finally felt well enough to try some yard work. I got out the ladder and started trimming the blooming and very smelly flowering jasmine on the trellis by the front porch. (The perfume has been getting into the house and closing up Paul's lungs). As I climbed the ladder and started trimming under the roof overhang I ran into a paper wasp nest. Luckily the wasps were not aggressive. Thank goodness for a cool day. I was not stung, but I sure got down from the ladder quickly.

I sprayed the wasps. Hopefully I will be able to finish the trimming of the flowers tomorrow and Paul's lungs will be better.

Our best to you all.


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