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The Metabolic ME/CFS Subset Outlined

Discussion in 'Latest ME/CFS Research' started by Cort, Sep 20, 2009.

  1. kolowesi

    kolowesi Senior Member

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    not CDC work

    Thanks for the correction, Tom.

    It had Dr. Reeves' name and I must have jumped to conclusions.

    Definitely want to keep this straight. I think I will edit my message.

    Kelly
     
  2. Dolphin

    Dolphin Senior Member

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    Thanks Kelly.
    I wonder is there any chance we are thinking of different studies as the one I'm thinking of doesn't have Reeves. I haven't read all of the posts in this thread that closely so maybe I misinterpreted something.

     
  3. kolowesi

    kolowesi Senior Member

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    Tomk it has to be the same one

    Can't imagine any two groups coming up with this :)

    Under Acknowledgements: "Special thanks to the Dr. William C. Reeves and the staff of the Chronic Viral Diseases Branch at the Centers for Disease Control and Prevention for many helpful discussions."

    He is not an author, sorry if I misled you (again).
     
  4. Cort

    Cort Phoenix Rising Founder

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    There has always been alot of attention on viruses -particularly in the patient community but I think we have to be wary. One of Dr. Peterson's patients said the Dr. regularly finds dozens of viruses in his patients - but no single virus dominates - which apparently suggests that the problem isn;t the viruses but what's letting so many of them in or allows so many to get reactivated. As I remember Dr. Peterson doesn't use antivirals on those patients - there are too many viruses!

    Certainly the HPA axis has to be part of the problem - as does one would think the autonomic nervous system. Both regulate the immune system (plus energy, heart rate, digestion, etc. ). Plus detoxification, the anti-oxidant system, energy production - all seem to come into play- one wonders where it all started. :confused:
     
  5. Cort

    Cort Phoenix Rising Founder

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    Raleigh, NC
  6. acer2000

    acer2000 Senior Member

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    Interesting stuff about cortisol. I actually have normal ACTH and normal cortisol (at least AM blood draw), but my system seems to respond inappropriately to stress/exercise. I am also one of those people who had low v02 and AT scores on the PFL test, but that didn't change much between the test days. I think my v02 score was 23 for the first day and 25 for the second, both very low for someone my age, but obviously not dropping worse for the second. I suspect my axis is not "even" though because I get symptoms of autonomic dysfuction from many stimuli, its as if it responds too strongly and then crashes for a while.
     
  7. klutzo

    klutzo Senior Member

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    How low is low?

    HI all,
    Where are you drawing the line and calling an 8 am cortisol too low? The reason I ask, is because I know Dr. Teitelbaum treats any am cortisol below 16, which is considerably above what conventional doctors would call too low.

    He also draws a major line in the sand between FMS, in which he says cortisol is too high, and CFS, in which he says it's too low. I've always liked Hans Selye's chart of Metabolic dysfunction, and I see this as stages, where you are too high at first, then burn out and become too low later on. You can see the chart at www.drrind.com, or at least he used to have it.

    Like many of you, I have done several ASI's. My pattern is always normal and within normal range, except for my 8 am number, which is too low by ASI standards, but just fine by conventional standards.

    I believe that is why I am not a morning person, and I know it predated my illness and is even one of the causes, since I worked a day job when I got sick, which really dragged me down. I only felt good when working second shift.

    My serum 8 am cortisols have run between 13 and 18.8.
    My ASI 8 am cortisols have run between 8 and 15.

    When I did the test that resulted in the 8am reading of 8, the lab called my alternative practitioner from all the way across the country and told her to put me on adrenal treatment right away or I would die. An 8 would elicit a yawn from a conventional doctor.

    So, where do you draw the line on low cortisol?
    Do any of you think FMS and CFS are the same illness?
    If you know of the late Dr. Poesnecker's work, do any of you think he was right?



    klutzo
     
  8. kolowesi

    kolowesi Senior Member

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    the cortisol yawn

    I got that diagnosis:) Ten years ago, I had the cortrosyn stimulation test. It was 8 baseline, the lowest normal number, and went up to 32 after the stim.

    BTW, some people who are very low should not do this test, I've read some horror stories on another forum.

    Eight years later I did an ASI, and I was too high at midnight, too low in the morning and normal in between.

    One year after that it was low all the time, with 8 a.m. at 1 (normal starts at 13). Thus, I was allowed to take hydrocortisone. I take 5 mg early in the morning and it's made a huge difference in how much energy I have. Well, it would, wouldn't it.

    I also have low ACTH, low aldosterone, undetectable estrogen, low testosterone, and high progesterone (I take a bunch of that and have since added estradiol and testosterone).

    Personally, I think 8 serum is low, and I believe the ASI folks with whatever they say is low or high. But sadly, I am not a doctor.

    Kelly
     
  9. Koan

    Koan Be the change.

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    Sad indeed, Miss Kelly, sad indeed.

    I'd make an appt!

    MWA
     
  10. kolowesi

    kolowesi Senior Member

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    koan doctoring

    Scary thought to have me for a doctor! Wow that made me see things from a different perspective. Thanks:D

    So glad you are back. MWA back to you!
     
  11. Koan

    Koan Be the change.

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    You've healed me a time or two, Doc Kelly.

    ;)
     
  12. klutzo

    klutzo Senior Member

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    low cortisol

    Hi Kelly,
    Wow! At a serum cortisol of 1, could you even walk? I can't imagine. I am glad you were able to find a doc who would prescribe hydrocortisol.

    Luckily, that 8 I had was not serum, it was saliva, if that matters. The strange thing was I felt better then than at any of the other times, even my recent 18.8. I could still drive a car short distances then, even on busy roads. I have not driven for almost a year now.

    My ASI pattern has always been normal, with none of the high at midnight like you had and which I understand is common in CFS. That is surprising, since I am a night owl.

    My estrogen and testosterone are normal for being postmenopausal and my progesterone is on the borderline of normal and too low. I tried progesterone cream and at 1/4 dose my breasts swelled up like painful balloons and I had overwhelming chocolate cravings, so I stopped.

    On ASI, my DHEA was a bit too low and my SiGA was abnormal;can't remember if it was too high or low, but it indicated sympathetic overflow. No kidding! I am the poster child for fight-or-flight! The DHEA supps. did nothing and neither did the phosphatidyl serine for the SiGA.

    It seems like your cortisol levels followed the Seyle Metabolic chart over the years, going high as your body fought adrenal fatigue, and then giving out.

    They say a fat tummy is a sign of high cortisol, so mine must have been high earlier at some point, lol, since I put on 9 inches around my middle at menopause without gaining any weight.

    I am glad you got the right help and hopefully you don't drag around when you first get up like I do.

    klutzo
     
  13. lostinthedesert

    lostinthedesert Killer, Clown, Priestess

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    Interesting to see various Dr's criteria and everyone's experience. One friend of mine has recently made major progress using Isocort. Her numbers were definitely low. I have seen her test results but can't recall them now. I know that topical cortizone really helped me get through the transition onto T3. Even though I went slowly, I had a rough time. Still the results were worth it.

    For comparison, I looked up Dr Shomeker's criteria for ACTH and cortisol that he uses in his matrix of biomarkers for his biotoxin patients. This comes from a letter he sent in 2006 wrt Katrina related exposures.

    ACTH/cortisol: abnormalities in ACTH/cortisol are absolute if AM cortisol > 19 ug/ml or <8 ug/ml; or if AM ACTH is >60 pg/ml or < 10 pg/ml. Abnormalities are recorded as
    dysregulation if simultaneous cortisol is > 15 and ACTH is > 15, or if cortisol is < 8 and
    ACTH <40. Early in the illness, as MSH begins to fall, high ACTH is associated with few
    symptoms; a marked increase in symptoms is associated with a fall in ACTH. Finding
    simultaneous high cortisol and high ACTH may prompt consideration of ACTH secreting
    tumors, but the reality is that the dysregulation usually corrects with therapy.


    http://newsroom.eworldwire.com/media_uploads/2.%20Dr.Shoemaker_toxins_report.pdf
     
  14. meandthecat

    meandthecat

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    PEM and the day after

    I have continued working through this, I was diagnosed CFS for what its worth, and that has meant pacing carefully what I did. I work as a head gardener so its physical work and the only way I could cope was to vary my activity and how I did it constantly so as to spread the work over different muscle groups. As long as I stayed within the envelope I could do it again the next day. If I over did it those muscles would take days to recover and sometimes I would crash completely.
    As I have recovered, slowly, I began to increase activity and the muscles took less time to bounce back seldom not working the next day just aching fit to bust.
    So I guess where this is leading is that even though I can do more, the post exertion fatigue will still delay if I do too much and if I had done those tests it would have killed me.
    and Hi everyone
     
  15. klutzo

    klutzo Senior Member

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    lostinthedesert

    Hi lostinthedeset,
    Thank you for those numbers. It looks like Dr. Shoemaker draws the line at 8 on cortisol. Mine did go down to 8 once, but no lower. As far as I know, I've never had an ACTH level done at all, not by conventional, integrative, or CAM docs. I wonder why they did not think it important.

    I am being put on T4 alone the end of next week. I sure hope I don't end up needing T3 added to it. I've been on Armour for 6 years, but it is just becoming impossible in this area to find any brand of natural thyroid. My PCP says not to worry, if I have a problem she'll just put me on some Cytomel. She seems to have no idea how much more dangerous Cytomel is than the natural T3, or maybe I've been given wrong info and it is not any more dangerous. I hope not.

    klutzo
     
  16. Different subgroups

    As far as exercise is concerned I think that people who agree to participate in an exercise study are self selecting into a certain group, which skewes the results. Exercise has such a negative effect on me - perhaps 3-6months of being back in bed - that I would refuse to be part of the group. I also know that as I get better I am better able to cope with exercise. So I imagine those who are in the group may have also got past the crisis part of the illness where any small effort makes them very sick again, and gives them a major relapse.

    We are all so different - remember at the conference they suggest there are 7 sub groups. Some of those groups can cope with exercise more than others. I believe that a blanket decision about exercise for CFSers is counter productive as some can and some cant cope with any exercise. When the CFSer is still in the crisis part of the illness (relapsing still) they shouldn't exercise as it will cause them to relapse.
     

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