CFIDS and FMS unmasked- This is it - I am convinced!

Discussion in 'Fibromyalgia Main Forum' started by advancewithcourage, Feb 2, 2005.

  1. advancewithcourage

    advancewithcourage New Member

    Hello folks, haven't posted in awhile. Wante to share something I read today that really confirmed my suspicions and validated my research on CFIDS, FMS and MCS being disorders of the HPA axis - primarily a malfunction of the hypothalamus.

    Here is a medical text description of the functions regulated by the hypothalamus gland.....
    hypothalamus ( maintains homeostasis: regulation of heart rate and blood pressure, regulation of body temperature, regulation of water and electrolyte balance, control of hunger and regulation of weight, control of movements and glandular secretions of stomach and intestines, stimulation of neurosecretory substance that stimulate pituitary gland to release various hormones, regulate sleep and wakefulness, induction of fight or flight fear/panic cycle

    Hmmmmmm. Does that sound like an accurate discription of every system that is malfunctioning in folks like us?!?!

    I am firmly convinced that the chronic viral and mycoplasmic conditions we deal with are a direct result of homeostatic imbalances effecting the immune system!!

    Keep hope folks! I believe this can be corrected - just not entirely sure how.

    An update on me... Still in remission on the SCD diet created by microbiologist Elaine Gotshall.
  2. desertfog

    desertfog New Member

    Isn't it true that adrenal burnout causes havoc on all the glands? Seems like I read that once but the ole brain ain't what it used to be. Does anyone know?

    desertfog
  3. advancewithcourage

    advancewithcourage New Member

    Well yes, but some with CFIDS are testing normal for adrenal output. I am convinced that the main problem lies in the dysfunction of the hypothalamus - that will certainly lead to adrenal issues for many folks.
  4. Forebearance

    Forebearance Member

    So what can we do to be good to our hypothalamus? Anything?

    What do hypothalamuses like?

    And, do you suppose the hypothalamus could be infected in people with CFIDS?

    Forebearance
  5. tandy

    tandy New Member

    youn have my attention~
    Now this one almost sounds believable!!!

    I've heard some cockamamy theorys in my time,...but this one just might be onto something big for us!!!

    Thanks for sharing AWC!!

    I have no idea WHAT if any,supplements are used for a sick or malfunctioning hypothalamus gland.???

    I hope Tansy or Plantscaper see's this and puts in their thoughts.

    Take care
    Tandy
  6. cherylsue

    cherylsue Member

    He describes the HPA and its effects in CFS and Fibro. Read From Fatigued to Fantastic.

    CherylSue
  7. advancewithcourage

    advancewithcourage New Member

    Well I am one hundred percent convinced that the hypothalamus is the issue, but you folks are right - where do we go from here?

    This is what I am currently researching. The only thing I can see so far is to reduce stress on the endocrine system. Dietary alterations are one way, relaxation, dealing with stress etc... I am not entirely sure, but I know it can be done... I have met enough recovered people to know it is possible.

    There are some CFIDS researchers who are pointing their fingers at the hypothalamus, but I have only heard of two methods of overcoming this problem and they don't work for everyone.

  8. advancewithcourage

    advancewithcourage New Member

    THanks for the info.

    Yes, please tell me the name of the doc in Canton.

    If you have any info about what nutrients support the hypothalamus let us know.

    I will tell you that I have been unable to find alot of info on dysfunction of the hypothalamus. Not to many medical journal articles about it and no one seems interested in researching it.
  9. paul38

    paul38 New Member

    Someone above said , "I've met so many people who've recovered.."

    Well SO have I - that gives me hope & I hope gives others hope and these recovered people generally enjoy life more after than before the DD even if they only make say an 80 % recovery.

    Also someone mentioned B12. I take Vitamin B Complex, Magnesium and omega 3 fish oil EVERY day, & these may well have helped me improve (to about 50/60%) in the last six months - (bed-bound before). Good luck to all.
  10. tandy

    tandy New Member

    about knowing of people who have gotten better from these harsh Diseases!!
    I myself,..have never met one.
    I have heard of people getting a little better here. But never anything substancial.
    But ,...I 'd take a improvement of 20% if I could get it!!

    This is an interesting post.

    Thanks
    Tandy
  11. cherylsue

    cherylsue Member

    I agree with you. People do recover. I did once for 3 years and was very active. Several infections in a short amount of time, stress, and ignoring body signals triggered another bout in June 04.

    I'm still trying to recover. Had made some progress, but the flu shot in November and a month long stomach virus negated my progress, and I'm starting to climb uphill again.

    It's disouraging, but I'm hoping to recover again.

    I'd be interested in knowing what supplements are supposed to help. I take quite a few myself, and I'm not sure if they are working.

    For Ralph - what diet would you recommend? Is it as important in just trying to get some nutrition in us when we just don't feel like eating?

    Thanks for your input.

    CherylSue

    P.S. Dr. Teitelbaum and my CFS specialist in Chicago seem to agree on one point - Solving the sleep problem is #1 priority. Dr. T believes it helps the hypo to heal and come online. My doctor feels it will heal my immune system.

    I'm going for a sleep study next week.

    Also, Dr. Teitelbaum believes that if you treat the sleep, endocrine, nutritional, and underlying infections you will heal. He discusses the HPA at length with a diagram. It's a little confusing, but I like the explanation in the above posts. Sure makes a lot of sense to me.
    [This Message was Edited on 02/04/2005]
  12. foxglove9922

    foxglove9922 New Member

    Which came first? The age old question,,,,are we suffering from bacterial and viral overloads that have wrecked havoc on the endocrine system or is the endocrine system malfunctioning allowing the bacterial and viral overloads? hhhmmmmmm?

    I agree with CherlySue and Dr. Tietlebaum's theory that all malfunctions must be treated to be whole again.
    [This Message was Edited on 02/04/2005]
  13. advancewithcourage

    advancewithcourage New Member

    To answer the question about my SCD diet - more specifically - it is the Specific Carbohydrate Diet and you should find info on this diet easily on the web. This diet is showing great promise in the treatment of Autism and has been used to treat intestinal disorders for years.

    No, I do not think this diet has corrected the HPA axis problem. I think it has reduced the stress on my body caused by eating foods that are causing immunological responses and molecular mimicry - which leads to autoimmune responses. Do some research on molecular mimicry to understand all this. I am not sure which came first - the leaky gut/food intolerances or the HPA axis problem. I am fairly certain it was the food issues. I have celiac and have had to avoid certian foods since 1997. But was not hit with CFIDS until 2001.

    Any stress affects the HPA axis - emotional, psychological, physical, environmental ect....

    The diet and a round of Nystatin was my first major breakthrough in my health.

    Then stress reduction has helped me the most next. I began to institute the FLYLADY home organization system and I cannot speak more highly of it. It can be used by anyone who can get out of bed. It has transformed my chaotic life into a more ordered and peaceful one - and hypothalamuses like that!

    I also take a nap almost every day.

    I cannot say I am completely cured. If I was I could eat normally. But, I am 90-95% normal now and it is great. But I will take this remission over the paralyzing agony I was in before anyday. But, I have met some - and I met and talked with them personally- that have recovered 100% of their health. One woman I met, Anita, had CFIDS and Multiple Chemical Sensitivity for 15 years and she was in perfect health for, I think, about 8 years when I met her. She was on no special diets and took no supplements whatsoever.

    There is hope for us folks! We can NEVER stop believing it. So I do have hope for complete recovery in my life. But I do not think the medical comunity has much to offer for CFIDS, I think we have to figure out this one on our own. I have spent over ten thousand dollars on alternative treatments for my various digestive ailments, then later CFIDS. THe only help I ever got was what I discovered myself. Of course that does not meant that no one out there has anything to offer... I have just not had luck so far. ANd when I examine the track record of some of these CFIDS docs...... it is not too good.

  14. advancewithcourage

    advancewithcourage New Member

    I am convinced from my research that the bacterial and other infections we deal with are a direct result of immune dysfunction caused by the dysruption in the HPA axis.
  15. cherylsue

    cherylsue Member

    I think both statements are correct! Stress, infection, diet, etc. tax our immune system and set us up for catching a bad virus. This bad virus attacks our immune, endocrine, and central nervous systems triggering CFS. The bad virus may or may not have left, but it certainly did its dirty work.

    Thus, we can't fight the various infections we are exposed to as efficiently as a "normal" person would. We're sort of running in an endless loop.

    Now, the secret is to get off that loop. If stress and infection are triggers, than we have to reduce them as much as possible. As we have previously discussed, having an arsenal in our medicine chest to ward off more common infections is a must. Stress is a little trickier because our disease is certainly stressful.

    As for as recovery, you (Foxglove) can also vouch that you recovered for several years after an initial bout. When we do recover we must be ever vigilent that we stay that way.

    CherylSue
    [This Message was Edited on 02/05/2005]
  16. Forebearance

    Forebearance Member

    I know that Mark Demitrack has been studying the HPA axis for many years. I've got his book, but it's very technical. I haven't gotten any new practical suggestions out of it. Dr. Teitelbaum's book seems to contain the most practical suggestions.

    I'll check out the vitamins you mentioned, Ralph!

    I agree that cutting down on stress helps me the most. Along with sleep.

    Forebearance
  17. advancewithcourage

    advancewithcourage New Member

    I have been reading up on Demitrack this evening at Forebearances mention of him. It seems to me that he is suggesting that CFIDS is like a mental illness or something.

    I don't buy it. I do not doubt that emotional or psychological stress can cause HPA dysruptions, but this certainly is not the only thing that can do it.

    I am going to keep reading and see what I get out of this guy.
  18. Forebearance

    Forebearance Member

    believe me, he doesn't think it's all in our heads. He's the one who diagnosed me and was quite up on CFIDS. But he does come from the approach of being a psychologist, so that affects how he writes about it.

    Many, many years ago, his contribution was to prove to doctors that CFIDS was not depression. That was a big help back in the "dark ages".

    Now, I believe he works in private industry and does research, but I don't know on what, exactly. Probably more HPA axis stuff.

    Forebearance
  19. advancewithcourage

    advancewithcourage New Member

    Is his approach something like Reverse Therapy?

    I think this therapy has promise, but the evidence is not at all in yet. What do you think?

    I met approximately 10 people that have recovered 100%. About half did so by dietary alterations, the other half by a Reverse Therapy type of treatment to correct hypothalamus dysfuction at Pleasant Valley in GA. One person just recovered spontaneously and did nothing.

  20. slowdreamer

    slowdreamer New Member

    Thanks Advance with Courage (love Your name) for the info...Having studied neurology yonk ago have always thought hypothalamus dysfunction was a like ly bet. Do viruses upset the hypothalamus ? Does anybody know..Anyway until they figure and find a new neuro-immune sustem connection in the brain i take MACA powder becuause I believe it gently Balances the Endocrine System of which the hypothalamus is a major controller.Really notice the difference if I stop the powder.