My theory of CFS, FMS, ME, GWS and MCS

Discussion in 'Fibromyalgia Main Forum' started by advancewithcourage, Sep 26, 2003.

  1. advancewithcourage

    advancewithcourage New Member

    OK folks! I am new here and for all it is worth I would like to present you with my theory of what is happening in these disorders. I did medical research before getting sick and have kept it up since then. I have read alot of info and talked to people who recovered and those who did not to find out what is working and what is not.

    Most of you have probably been sick for longer than me and can tell me what you think. Am I all wet? Am I missing information?

    OK, here it is......

    My theory is that these disorders are usually caused by a virus, bacteria, or fungus (not necessarily still present in the body) that stresses the body to the point of causing the General Adaptation Syndrome (G.A.S. for short) describe in Seyle's endocrine research (basically an all out endocrine system malfunction). Many other stressors like physical injury, emotional stress, mass chemical exposure ect.. can contribute or cause the body to fall into the exhaustion stage of the G.A.S. In addition to this I feel that the primary stressor (either excess cortisol or the pathogen itself) causes leaky gut syndrome. When the food antigens cross the intestinal barrier into the blood stream the immune system takes a blueprint of the genetic structure of the food molecules and begins to manufacture antibodies based on the genetic code of these molecules. Problem is that these molecules resemble body tissue and in a process called molecular mimicry, the bodies own immune system begins to attack itself causing a variety of problems (brain swelling in ME/CFS, muscle and joint pain in FMS ect, myelin degeneration in MS)

    I have been researching treatments and talking with people who recovered to see what is working and what is not... Here is what I have come up with...

    1. Therapuetic water fasting - high rate of success with autoimmune disease of all types. I have a a friend who had FMS and one with RA who both recovered after this treatment in a doctor supervised clinic.

    2. Raw Food Vegetarianism - like the Halleluah Diet. Halleluah Acres recently did a FMS trial and significant improvement or remission was noted by 50% of all study participants after only 3 months. I tried this diet and improved by about 70% after 2weeks, but had to discontinue the diet due to pregnancy.

    3. Spriritual/Emotional intervention. About 90% recovery rate claimed by those who adhere to program for 1 year. (edited to remove URL). I talked with about 7 people directly and indirectly (at a conference) met many more.

    4. Allopathic treatment and symptom management - extremely low rate of recovery

    5. Orthomolecular medicine (megavitamin therapy)- modest recovery rate

    6. New Age Energy Medicine - most people I met seem to get MUCH worse and rapidly.

    7. Hypoallergenic Food Allergy Rotation diets - such as the Special Foods Diet. Currently evaluating this, but it makes sense based on my theory and there are some case studies of success, but I do not have any numbers yet and have not talked with anyone personally who has recovered.

    8. Antideppressants - major failure here. This is clearly symptom management only and disproves the theory that these disorders are caused by depression

  2. advancewithcourage

    advancewithcourage New Member

    Forgot to mention tetracycline therapy that seems to be effective about 25% of the time.
  3. bigbrowneyesnice

    bigbrowneyesnice New Member

    I love what you have wrote so far,
    just a few things, if you don't mind.
    The leaky gut happenes because the lining of the intestine is not intakt anymore. There are many reasions why this can happen. Antibiodics, but also other medication, also toxins, like mercury, stress of any type ( abuse, operation, diseases, accidents), a bad diet (too much sugar or bad carbs, etc.etc
    Because the linig is not intakt anymore yeast and bad bacterias can seddle in. That already causes a whole lot of our problems. Just read about yeast and symptoms.
    Not just antigens go in our bloodstream but also small amounts of protein. They travel through the bloodstream to all parts of our body. Affecting our brain, muscles and nerves.
    I have done so many researches, I have just not found out why,FM, CFS, ADD/ADHD Autism, MS, Alzheimer, Parkinson etc seems to have the same reasion why they are there in the first place but than manifest in different diseases. I am working very hard on that. I have two autistic kiddis, one who was diagnosed with severe autism and is now a almost normal child the other one who did not improve rather got worse.
    Sorry if I messed up words, I am German.
    Awsome job !~!!!!!! (do not know your name)!!! I thought just me and hubby are so involved in it.
    LOve Anita
  4. Solstice

    Solstice New Member

    I am not someone who has a medical background, and really don't understand physiology and anotomy all that well, but I can tell you my personal experience.

    I have had CFIDS and FMS for 24 years now. I am not doing well at all right now, but I have had times when I was feeling better than this. The things that have helped me are similar to what you are saying.


    Although I do believe there is a genetic component here (I think my father had FMS) I believe my problem did start wtih a virus. I remember the day. High fever, then fatigued and never got better completely, then all the other stuff started to happen. Some of the first things I noticed were reynauds, MVP, digestive problems, fatigue of course..... I consider this when the CFIDS started.

    AFter getting ill with CFIDS then losing a child 3 years later probably put me into the exhaustion phase of GAS, and then the fibro set in.

    Also started to have what I believe now is leaky gut syndrome. Taking antibiotics because of being sick frequently, because of my immune system being weakened, just led to more digestive problems, which as you know then complicated everything.
    I kept trying to exercise thinking that would get me stronger, and then I would get sicker.

    Of all the things I have tried over the last 24 years (although i was not diagnosed till 94, so all that time, I was probably getting worse by not treating it at all. I have since come to believe that early intervention is KEY to getting well ), I will tell you what was helpful.

    I was on a raw foods diet for about 5 months, and it is the best I have ever felt, since this all started. I did not feel recovered and had some problems still, particularly digestive pain still, but I felt better than doing anything else. I still feel the best when I juice or eat raw for days. Eating sugar or white anything is the worst.

    I am not familiar with therapuetic water fasting so I cannot speak to that, although I would be willing to try anything. Do you know where they do it?

    I think the spiritual and emotional work is essential, as I believe all illness is multidimensional and we need to work on all levels. I am curious to look up the reference you make here.

    Allopathic treatment has done nothing at all for me. If I took all the drugs that the regular docs have perscribed for me, I would be dead. Although, you will see there are many people here who are taking various medicines who seem to be helped by them. Perhaps I would be too if I had a doctor who knew what to treat and with what.

    I tried megavitamins and all it did was bloat me.

    I do reiki, which I wonder if you consider energy medicine. It seems to help.

    Antidepressants are at the end of the list for me, and has only made things worse when I did them.

    I hope you will continue to share your research with us, as we can all learn from eachother.

    I hope you will be feeling better yourself. Have you since had your baby? What protocal are you now doing yourself? What do you have?

    Thanks for sharing!

    Solstice
    [This Message was Edited on 09/26/2003]
  5. Mikie

    Mikie Moderator

    This is a real chicken-and-egg discussion and even experts and researchers do not know the answer. Are our illnesses genetic? Most modern researchers tend to believe they are. If so, does stress allow infections of opportunity or do infections stress our immune systems until our entire systems are affected? At this point, no one can say for sure.

    Thanks for giving us your opinions and the results of talking with others about what is working for them. I do find it strange that any "New Age" treatments would cause people to get "MUCH" worse. There is nothing in New Age thinking which is harmful. On the contrary, New Age beliefs rely on acceptance, a belief that everything happens for a reason, and the value of meditation and love. Hardly things which would typically make people feel worse. I guess I would have to have more info about the specific New Age treatments these people were utilizing.

    Again, thanks for sharing. BTW, we are not allowed to post URL's here. Please read the board rules and info for new members. Just click on these above where you log on.

    Love, Mikie
  6. advancewithcourage

    advancewithcourage New Member

    I appreciate all this input - gives me alot to think about. Clearly we must all keep fighting!!! Remember Lorenzo's Oil!

    To Bigbrowneyesnice - Have you looked into the Special Foods Diet? I know it has worked for some autistic children. They have a comprehensive program. I applaud your efforts on behalf of your children, especially when you are struggling with chronic illness yourself.

    To Soltice - There is a clinic called Dr. Scott's Natural Health Institute that does therapeutic fasting. That is where my two friends who recovered went. Since I cannot post URLs (sorry didn't notice that) you will have to do a search. Dr. Joel Furnham (I think that is it) has a book out Fasting and Eating for Health that explains why it works in autoimmune disease.

    Wondering why you gave up on the raw foods diet. I was told it takes a looooooooongg time to recover on it. One man I know of took 5 years to overcome Rhuematoid Arthritis, but he is free of it now. Frankly, I just cannot eat raw food when pregnant. BARF!

    Treatments that made people worse were associated with NAET, Rieki, and some others I cannot mention. I am certain it cannot make everyone worse, but it did some I met. NAET made me worse and totally agravated my undiagnosed celiac disease.

    To DP24555, I still think their must be some relationship with the endocrine system, perhaps for only some of the sufferers. I am really NOT a scientist, so I cannot tell you how. Art Mathias has explained this connection well in his research in his book In His Image. Also Henry Wright on Fear, Stress, and Physiology conference on audio I own. Of course they could be totally wrong. I appreciated your input, information, and references. The genetic component seems very valid. My grandmother suffered from "hypochondria" for 20 years. No one believed she was sick including me. Now I can see that just because the doctor cannot find something definitive in a medical test, does not always mean a person is psychosomatic.


  7. advancewithcourage

    advancewithcourage New Member

    Thanks Dan! Interesting! Sounds like you have done your research. I am orthostatic as well.

    I wonder.... Could excess cortisol or other hormonal malfunctions be damaging to the red blood cells? If you like to research, check out the new and emerging field of psyconeuroimmunogy. Scientists are actually proving biochemically that our thought processes have a direct effect on the functioning of our immune systems!
  8. Solstice

    Solstice New Member

    It has recently been scientifically proven that drumming has a positive effect on the immune system. After reading that I started a drumming circle at my home. We meet twice a month. We use djembe drums and have an drumming instructor. You can look this info up on the internet. They are advocating using drumming in nursing homes and with children in schools now.

    Solsstice
  9. Solstice

    Solstice New Member

    To answer your question as to why I gave up eating Raw..............This sounds so wimpy...........but it is just too hard...............I have a family and they do not want to eat that way. I tried to get them to all pitch in and help eachother and eat the way they wanted and I would eat the way I wanted , but it fell apart. My husband would have to be totally dedicated to that or I would have to be willing to fix two meals for everyone,. But, it did not work out. They would just be foraging for food in the house when I was trying to stick with raw, and I felt guilty, so I eventually went back to their way of eating, which by then was worse than it was before I went raw. So, my diet has been quite bad now for awhile. Although, this summer I did more raw again with the good food available during the summer. Basically, now I am totaly confused about HOW to eat, and have no real routine.

    I do need to get back to something good on a daily basis. I have little discipline to do this, I get cognitively fogged and can't figure out what to eat most of the time. And the longer I go not eating well, the worse it gets.

    Anyway,

    long answer...............

    How are you feeling with your pregnancy? What do you feel good eating while pregnant?

    Solstice
  10. advancewithcourage

    advancewithcourage New Member

    I am relapsed big time since becoming pregnant. I just eat a regular diet now and think I really need to get back to raw foods when I am not nauseous.