Revised theory of the cause of CFS

Discussion in 'Fibromyalgia Main Forum' started by drjbreck, Nov 14, 2002.

  1. drjbreck

    drjbreck New Member

    Hello everyone. I have been continuing tirelessly with my research of the cause of chronic fatigue. I have yet to formulate the exact cause, but I believe I have narrowed it down quite a bit. I think I can safely rule out what CFS is not initially caused by and what encompasses the symptoms once CFS begins. I believe I can pinpoint the root problem at this point as well. Over the next months, I would like to conduct surveys here to help me study symptoms, treatments and gain overall information from CFS patients themselves. I apologize if I am perhaps a bit impersonal sometimes, and don't respond specifically to people or e-mails. Its nothing person, but I am trying to keep this as a wide angle scientific study experience.

    Much of this information can be found on the internet. I am defintely not the first to realize or believe in this theory. I am highly interested in the work of Dr. Poesnecker and I am aware some of you are being treated by him. I am interested in your results at the time, so drop me a line if you are being treated by him.

    Root Cause : hypothalamic pituitary adrenal axis (AKA HPA AXIS) loss of rhythm. Why? - extended stress - either physlogical or physical, possibly genetic predeposition to weak HPA axis or adrenal functioning (usually runs in families). It's up to YOU to find out what stressful event, either physical or mental that caused your CFS. This can include prolonged and severe illness, deaths, working the night shift, herbs etc...

    Opportunistic infections :
    Misconceptions that I believe are simply not the root cause, but just add to the array of symptoms are diseases that take the opportunity or "take advantage" of the fact that the immune system is either hyperactive or supressed (both caused by HPA axis not being rythmic / includes adrenals especially). EBV, mycoplasma etc... I remind you are typically found in normal control subjects. The difference is they are elevated in CFS, because the immune system is compromised, just like in AIDS. It functions, but it is very supressed. Lymph node swelling, low grade fever, headaches and flu like symptoms that CFS patients report throughout the illness are usually caused by these diseases making some headway and winning. I am especially interested in lymph node swelling in this case. Typically, your physical symptoms such as fever, lymph node swelling, neck pain and headache will mirror your fatigue and tiredness. The reason that so many causes of CFS have emerged is because the root cause (hpa axis out of order) causes your whole body to make changes that in fact compromise its ability to fight disease and to remain healthy. Obviously, not as serious as AIDS, but its literally a living "hell". Not being good enough to do what you want and enjoy life, but not being worse enough to die.

    Possible Diagnosis of CFS:
    We've all read the studies about the literally thousands of tests on CFS. There are so many possible tests, but the only tests I highly rec. someone should get is a 1 mcg ACTH test, cortisol SALIVA ONLY tests (if possible get the maximim number of samples during the day and do this test twice to confirm accuracy), tilt table (of course), DHEA-Sulfate in relation to cortisol secretion (typically a whole adrenal test screening - charted out for you). There is more tests, but until I gather more information I want to stop with those tests.

    Possible treatments :
    Ok, I know I've skipped symptoms and all of that, but I will be coming back to all of this to write a real theory at some point. This is just my brief explanation. I believe in natural remedies just as much as an holostic doctor out there, but I also often side with synthetically produced drugs on the market. For the time being, I will only list natural remedies as I believe in this case there are few safe drugs out there that I want any of you going out and asking your doctor for in this case.

    The 3 treatments I am highly interested in and COULD be of potential benefit to some people are :

    Herbs:
    (These all balance, or change your adrenal hormone levels in some way or another. These are like real drugs, meaning, they can be dangerous. Read up about them from several sources before beginning treatment)

    Licorice Root (glycyrrhiza)
    Withania somnifera (ashwagandha)
    Panax ginseng
    Relora

    Vitamins:
    Vitamin C Mega Doses (ascorbic acid)
    BComplex High Dose or individuals especially B1, B6 and B5
    Tyrosine / L-tyrosine (highly rec.)
    Phosphatidylserine

    Other:
    methylcobalamin (b12 coenzyme)

    I will tell you right now I do not rec. self treatment. See a doctor, talk to them. A holistic doctor, a dietician, but do not self medicate. Do not take all of these treatments together, especially the HERBS! Chose 1 out of each category if you decide too. Small doses, work up to bigger ones.

    Thanks for your time everyone. I will continue to monitor and provide help as much as I can to find the cause and cure to this 'imbalance' of the hypothalamic-pituitary- adrenal axis.

    JLB
  2. drjbreck

    drjbreck New Member

    Hello everyone. I have been continuing tirelessly with my research of the cause of chronic fatigue. I have yet to formulate the exact cause, but I believe I have narrowed it down quite a bit. I think I can safely rule out what CFS is not initially caused by and what encompasses the symptoms once CFS begins. I believe I can pinpoint the root problem at this point as well. Over the next months, I would like to conduct surveys here to help me study symptoms, treatments and gain overall information from CFS patients themselves. I apologize if I am perhaps a bit impersonal sometimes, and don't respond specifically to people or e-mails. Its nothing person, but I am trying to keep this as a wide angle scientific study experience.

    Much of this information can be found on the internet. I am defintely not the first to realize or believe in this theory. I am highly interested in the work of Dr. Poesnecker and I am aware some of you are being treated by him. I am interested in your results at the time, so drop me a line if you are being treated by him.

    Root Cause : hypothalamic pituitary adrenal axis (AKA HPA AXIS) loss of rhythm. Why? - extended stress - either physlogical or physical, possibly genetic predeposition to weak HPA axis or adrenal functioning (usually runs in families). It's up to YOU to find out what stressful event, either physical or mental that caused your CFS. This can include prolonged and severe illness, deaths, working the night shift, herbs etc...

    Opportunistic infections :
    Misconceptions that I believe are simply not the root cause, but just add to the array of symptoms are diseases that take the opportunity or "take advantage" of the fact that the immune system is either hyperactive or supressed (both caused by HPA axis not being rythmic / includes adrenals especially). EBV, mycoplasma etc... I remind you are typically found in normal control subjects. The difference is they are elevated in CFS, because the immune system is compromised, just like in AIDS. It functions, but it is very supressed. Lymph node swelling, low grade fever, headaches and flu like symptoms that CFS patients report throughout the illness are usually caused by these diseases making some headway and winning. I am especially interested in lymph node swelling in this case. Typically, your physical symptoms such as fever, lymph node swelling, neck pain and headache will mirror your fatigue and tiredness. The reason that so many causes of CFS have emerged is because the root cause (hpa axis out of order) causes your whole body to make changes that in fact compromise its ability to fight disease and to remain healthy. Obviously, not as serious as AIDS, but its literally a living "hell". Not being good enough to do what you want and enjoy life, but not being worse enough to die.

    Possible Diagnosis of CFS:
    We've all read the studies about the literally thousands of tests on CFS. There are so many possible tests, but the only tests I highly rec. someone should get is a 1 mcg ACTH test, cortisol SALIVA ONLY tests (if possible get the maximim number of samples during the day and do this test twice to confirm accuracy), tilt table (of course), DHEA-Sulfate in relation to cortisol secretion (typically a whole adrenal test screening - charted out for you). There is more tests, but until I gather more information I want to stop with those tests.

    Possible treatments :
    Ok, I know I've skipped symptoms and all of that, but I will be coming back to all of this to write a real theory at some point. This is just my brief explanation. I believe in natural remedies just as much as an holostic doctor out there, but I also often side with synthetically produced drugs on the market. For the time being, I will only list natural remedies as I believe in this case there are few safe drugs out there that I want any of you going out and asking your doctor for in this case.

    The 3 treatments I am highly interested in and COULD be of potential benefit to some people are :

    Herbs:
    (These all balance, or change your adrenal hormone levels in some way or another. These are like real drugs, meaning, they can be dangerous. Read up about them from several sources before beginning treatment)

    Licorice Root (glycyrrhiza)
    Withania somnifera (ashwagandha)
    Panax ginseng
    Relora

    Vitamins:
    Vitamin C Mega Doses (ascorbic acid)
    BComplex High Dose or individuals especially B1, B6 and B5
    Tyrosine / L-tyrosine (highly rec.)
    Phosphatidylserine

    Other:
    methylcobalamin (b12 coenzyme)

    I will tell you right now I do not rec. self treatment. See a doctor, talk to them. A holistic doctor, a dietician, but do not self medicate. Do not take all of these treatments together, especially the HERBS! Chose 1 out of each category if you decide too. Small doses, work up to bigger ones.

    Thanks for your time everyone. I will continue to monitor and provide help as much as I can to find the cause and cure to this 'imbalance' of the hypothalamic-pituitary- adrenal axis.

    JLB
  3. amymb74

    amymb74 New Member

    I am sooooo interested in this theory. After being sick for a few years I bought a Merck manual & read it cover to cover. I knew then that something was wrong with my hypothalamus. I have now been ill for 10 years. I got mysteriously exausted when I started woking night shift. Every doctor I have seen in the past 10 years (there have been many) thinks that cannot be the root of my problems. I have an appt. w/my cfids specialist on the 27th - I was going to cancel but now I am going to dig up info on this & find out how to get this test. Thank you for this information. Amy
    And, PLEASE keep posting with info. on this![This Message was Edited on 11/14/2002]
  4. Roxi

    Roxi New Member

    Thanks for everything. For years I've asked doctors for adrenal function testing and have been laughed at. Recently have felt much worse with pain upper left abdomen for months. Ultrasound showed pancreas clear but a cyst on 1 kidney. Coincidence?
  5. Elvira

    Elvira New Member

    I have dealt with stressful events for what seems like my entire life, starting with my parent's divorce when I was 11. My mother had a nervous breakdown and was very hateful and bitter, and one sister was manic-depressive. When I finally made a life of my own, I married an alcoholic and got nothing but stress and bad things out of that situation. Felt like I was always of an emotional rollercoaster and I eventually sought treatment for depression and anxiety attacks. (got divorced and that helped!) Seems like I have always been overly sensitive and do not handle stress of any sort very well. I don't know what part this may or may not have played in my illness. Have been in 2 auto accidents in my life, neither of which resulted in more than bumps and bruises, that I know of. One was 22 years ago, the other was about 13 yrs. ago. Didn't start developing fibro symptoms until about 10 yrs. or so ago, to the best of my remembrance. My life is stable now and less stressful than ever before, and I'm married to a very good man, but I have horrible fibro pain daily. Don't know if any of this helps you in your research or not, but thought I'd put it out there.

    Please continue with your research and keep us updated!
  6. ohmyaching

    ohmyaching New Member

    I pretty much have an idea as to the cause of CFS. I believe that it is viral and is caused by HHV6. It seems like all I'm doing now is waiting for the world's medical resources to catch on and look further into this. The research seems to have come to a standstill. Heck, I'd just be happy at this point if it were generally acknowledged by the medical field that we have a serious problem.
    HHV6A, as I understand it, is able to enter the immature immune cells before they become activated against the virus and disable them.
    I found the following info on the web. Because I don't take everything I read on the web as being true I'm just going to take them at their word for the time being until I can check it out. Supposedly there is a new field of study called psychoneuroimmunology. They propose that stress depletes immune resources by throwing things so much out of balance that the immune system can't recover. Couldn't this "stress" be viral? Wouldn't inactivation of our immune cells by HHV6A deplete immmune resources - it sounds logical. One of the things this group studying psychneuroimmunology has claimed is that lymphocytes secrete hormones, neuropetides, endorphins, ACTH. These are used to communicate with the rest of immune system (adrenal, hypothalamus, etc,) and initiate a response. A response that might be impaired if these lymphocytes are inactivated in their immature stage.
    I'm not claiming anything I've said is true because I often don't get my facts straight. There are also things that don't make sense to me like why our immune systems are overactive and why we're not sicker if our immune system is as impaired as some claim. I can also see where some of our new medications might be so strong that they throw our immune system out of balance to the point where we can't recover or even our toxic environment might be capable of that. Anyway I'm sticking with HHV6A until proven differently.
  7. Sweetmia

    Sweetmia New Member

    I have had CFS for over 20 years--just diagnosed 6 months ago.--I "lived" feeling lousy all the time--just accepted that this was the way I had to "live".
    I definitely believe that the problem is due to a suppression of the hypothalmus. This is the master gland that controls all our other glands/hormones. For 20 years I have had hormonal problems that should have been diagnosed as CFS. It is my belief that a virus suppresses the hypothalmus and then one has these cascading hormonal problems that then lead to other problems--immune dysfunction etc...
    I presently take all the supplements that you have listed and in addition, I take acetyl-l-carnitine, alpha lipoic acid and NADH. These helped restore the mitochondria that can also be dysfunctional because of the suppression of the hypothalmus. Last Monday I came back from my doctor who wanted me to once again see a neurologist, because of my continual problems with walking. I have seen a neurologist and have had 3 MRIs--all normal thankfully.
    My husband who is a doctor said no. You do not need to see anymore doctors!! You know, since I have taken that approach--a sabbatical from doctors (except my dear husband) I have felt better. I was getting so tired of getting meds to alleviate symptoms--I want to heal myself.
    I will continue to work, run 5miles a day--even though both are not as "perfect" as they used to be and most importantly I will feel as if I can heal and control my own health destiny.
  8. amymb74

    amymb74 New Member

    Does the NADH seem to help you? How much do you take a day & how long did it take to notice the effects? My doc wants me to try 20mg/day for 2 weeks & see if it helps. I have to wait until after Christmas to buy it but would love to know if it helps others as I am definately going to give it a whirl. thanks - Amy
  9. nancyneptune

    nancyneptune New Member

    when I first started having dreadful panic attacks I did large quantities of research on the brain and the functions of each chemical. I also came to the conclusion that my hypothalmus and pituitary were dysfunctional.
    Since they control the adrenal glands and all hormones, there had to be some defect therein.
    My childhood was a horror, and caused post traumatic stress syndrome, as well as panic disorder. Once you get that going I don't know of any way to stop it. There's also the problems with fibro where the substance P starts getting overloaded in your blood stream. Someone needs to work on that aspect of pain control.
    I also read of surgery to remove part of the pituitary that was electrically misfiring, or some such and it had a positive effect on stopping panic attacks. I'm not saying let's all go get brain surgery! Just thought it was an ineresting side effect.
  10. lucky

    lucky New Member

    I also believe very strongly like you that the HHV6a virus is the reason for our illness. Being ill almost as long as you are, I have learned what to believe and sort out and found peace - but a lot of hope that somebody in the not too distant future will find a miracle cure for us. It helps to know that I am not alone with my thoughts. Take care, Lucky
  11. Rozmund

    Rozmund New Member

    Are you an enchronologist in training?
  12. Sweetmia

    Sweetmia New Member

    Hi Amy--I take 20 mgs first thing in the morning. Very important to take at least 30 minutes before eating breakfast. Also important to take with water. Do not take with juice or coffee.
    I just started taking NADH 5 days ago. I have read that it takes 2 months to determine if it is effective or not. In the book From Fatigue to Fantastic--Dr. T talks alot about mitochondrial dysfunction. The NADH is helpful in restoring the mitochondria. Hope this helps.
  13. kay

    kay New Member

    HAVING AN AMNIO acid test tomorrow, then I am to take Redoxal, for 2 weeks 3xd, then take a DMPS-800 Mg.and do a 6 hour urine test. Does this sound right to you? I am scared to take the big dose of DMPS. Is it safe? Thank you, Linda
    [This Message was Edited on 11/18/2002]
  14. AnnetteP

    AnnetteP New Member

    I wouldn't put my money on this one. I had a PCR test and I do NOT have the virus. I am feeling incredibly well and energetic, on a strong dose of Armour thyroid. A slight decrease in the dose will certainly leave me exhausted. But, the BIGGEST threat to my health is stress. One little stresful episode will set off the cortisol and I can take it to the bank that I will have a flare shortly afterwards. With stress, comes an increased ANA level, for me; when I manage to keep stress at bay, my ANA decreases.

    The most important drug I can take for CFS is Armour and the most important thing I can do is AVOID stress.

    Annette
  15. vloga

    vloga New Member

    Ohh,for someone who understands ! I'm delighted that, having strayed onto this site, you want to stay and help us all.

    I studied physiology to UK degree level,so when I became ill after food poisoning (reheated chicken in a curry at work) I immediately realised that the hormonal systems were upset. My dr diagnosed me immediately, but gave me bad advice - to keep exercising - and I was told when I saw a consultant that I'd probably have recovered fully if he had advised me to go to bed for 3 - 6 months. My lymph nodes were up for over a year before going down, and they come up at the slightest hint of infection - sometimes it's the first inkling I have that I'm going down with something else.

    That was 13 years ago. There's virtually no treatment in the UK, and certainly no drug treatment apart from antidepressants, which send me comatose. In some ways I'm quite grateful, when I read the posts here. A NY friend with CFIDS told me he'd had 168 treatments; that would have finished me off ! I had to move to a different part of the country because of a job - the area has so few doctors that there are over 20,000 people without access to one, because their books are full, and I'm one of those.

    I think that there's a very complicated hormonal response in CFIDS-FM patients; maybe in everyone. The classic feedback systems described don't seem to cover us fully. I think that the fatigue link is part of the KREBS cycle - apparently I can't get benefit when ATP is broken down to ADP. Maybe the system has screwed up, and something else is being produced instead ?

    And yes, my tears are very acrid, most of the time. It's like pouring battery acid down my face. Still, :) I don't have that much energy to cry, so now I try not to waste what little energy I do have, by crying.

    Thanks for helping.
  16. ohmyaching

    ohmyaching New Member

    I'm always glad to hear from people who have had PCR testing for HHV6 so I can see whether or not what I read as theory is proving to hold up (or not) when actually applied. Time will tell. One of the biggest arguments against HHV6 is that not everyone with CFS tests postive for HHV6. The opposite argument is a that the high possiblity of inaccuracy with the testing makes it less likely to get a positive reading. One of the things that bothers me with the research being done is when researchers say they tested chronic fatigue patients. I wonder how they know for certain that they are actually chronic fatigue patients when there is no definitive test that will tell them for certain that a person has chronic fatigue syndrome. There are many illnesses with symptoms similar to CFS and I just wonder what they use as their criteria. When the researchers say they found such and such percentage of their patients with CFS to have HHV6 how can those figures be accurate when there is no definate way to say for certain that these patients all have CFS? Ah well, just digressing. I haven't been tested for HHV6, still trying to get the doctors around here to believe that CFS is a credible illness.
  17. AnnetteP

    AnnetteP New Member

    I don't doubt the presence of HHV-6 in a number of CFS patients. But, what I do doubt is that it is the CAUSE of CFS.

    I have had CFS for over 10 years. Its only the Armour thyroid at 1.5-2.0 grains that has a positive effect on my fatigue (1.0 and I'm almost lethargic a good part of the day). I know if I get off the Armour I will be right back where I started, however since Armour is NOT an anti-viral, it cannot possibly be suppressing an HHV-6 outbreak, even if the test was not accurate.

    I have read a lot on HHV-6, and it was one of the things I had discussed with my dr. months before I took the PCR. She even said she's not ruling out HHV-6, even though the test came back negative, but the point is, if I had it, it wouldn't be responsible for my fatigue, anymore than any other virus. For me, my thyroid is what's brining on my fatigue.

    This is the first time in YEARS that I feel like I'm 10 years younger than I really am!

    Annette