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No Longer Naive in the Ways of The Beast
After having lived for years with ME/CFS, Jody Smith learned there's more to this beast of an illness than she realized, and that what might help one person may not help others ...
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Hormones

Discussion in 'Hormones' started by filfla4, Sep 9, 2010.

  1. filfla4

    filfla4 Senior Member

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    I know we've discussed this before some time back but I thought I'd start a new thread on the subject, as I just can't find where.

    During the XMRV Workshop this week, Cleveland Clinic twittered during Judy Mikovits's presentation:

    "Judy Mikovits: We know this is a hormone-related virus, that's why we see it in younger patients [around puberty]."

    I have been a sufferer for 17 years. I was extremely ill and housebound for the first 18 months. I then sort of functioned on a push-crash cycle. At that time I would describe myself as a "mild to moderate" patient. During two pregnancies, the rush of hormones were like a miracle cure...I'd suddenly find myself full of energy, only to get very very ill, literally within hours of giving birth, including many complications, which I won't bore you with the details of.

    Now with early menopause I have gradually been going down hill. My symptoms are far more "neurological" than they were before and would now certainly put myself in the "moderate to verging on severe" category at times. I don't often leave the house...and that's only when I really can't get out of it.

    I've been to see my gynaecologist so many times in the last three years that I've lost count. He briefly tried me on HRT which didn't agree with me. Bio-identical hormones were never discussed or even suggested. He also referred me to an Endocrinologist and my thyroid etc are fine.

    Can any of you out there, who are more scientifically minded, and lightyears ahead of me on this condition, share any information?

    Thanks!!!
  2. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    Southern USA
    I am SO lucky my CFS doctor recommended Dr. Dzugan, Dzugan Method. It is all done online and on the phone. He and my doc ordered a LOT of blood tests, I answered hundreds of questions online and then I was prescribed the right amount of compounded hormones and other supplements. This is all done with my reg. CFS doctor, the two doctors are in touch.

    I have had CFS for 18 years. A few months after my hysterectomy in 2008, I started getting POTS. It was horrible, nightmare. The Dzugan method and all of the blood tests have been fantastic. I get more tests every three months. Very thorough. Most doctors, EVEN OBGyn's are clueless about hormones. SO odd. My GYN's over the years knew VERY LITTLE> scary. Just the reg. stuff, patches, pills.... Silly they don't try to know more.

    Having my body balanced and getting everything I need, food, rest, MILD excercise, supplements all help me to slowly improve.

    The balance of hormones has made me better but I needed many supplements. I have lots of things like low vit D, and things to balance as well as hormones. It is important that doctors understand these things, most do not.
  3. kat0465

    kat0465 Senior Member

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    Texas
    fifla4,
    what did she mean by a hormone related virus?? i missed that in all th reading i have done.
    i had a total Hysterectomy in 08, and 3 month later started bio identical hormones. i still have the occasional hot flash( usually thats when my estrogen needs tweaking)
    but as far as feeling better. i can honestly say i feeel ten times worse since the surgery:( if i could take it back i'd do it in a heartbeat.

    unfortunately, you may have to insist that he let you try Bio identicals. i fought my gyno, who wanted to throw a premarin pill down my throat once a day. My body is suffering enough without putting horse urine in it.

    sorry i got off subject, was Dr. Mikovitz saying we do better without all th hormones or worse??


    Kat
  4. camas

    camas Senior Member

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    I really don't have anything helpful to add, but want to thank you for starting this thread because I've had similar questions. All the women in my family had hysterectomies including my mother who developed Fibromyalgia after the fact. I'm the first one who is going through it 'naturally' and, at 51, am wondering what to expect when I actually become post-menopausal. I've been in a relapse for the past 9 months triggered by a bad cold and have wondered if fluctuating hormones are contributing because a virus usually only throws me off for a few months. It's also not a typical relapse where I feel sick. I've just been terribly weak.
  5. Sunday

    Sunday Senior Member

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    I think what Dr. Mikovitz meant by hormone-related might have been that hormonal changes (either puberty or menopause, and possibly this is true for men as well, though their changes are less obvious) - those changes often spark this retrovirus into action.

    There are herbs you can take which have phytohormones. These can really help healthy people; how they act in us may be a matter for experimentation. It does seem possible that if we can even up the hormone situation, it might at least help suppress the virus (not to mention directly addressing the problems messed-up hormones give us).

    Maca root is the one that seems safest (from a bit of research and my own experience) for people with CFS to take. It is a starchy root kind of like taro, with a pleasant, slightly sweet bland flavor. The powder goes well in foods and isn't bad on its own. The powder is available at many health food stores and online.

    I use Dr. Chang's freeze-dried Chinese herbs; the Comfort formula is geared toward hormones, especially women's hormones, as are some of his other formulas. Very high quality and though the jars cost a lot you use only 1/4 to 1/2 tsp. at a time, so they last for a month to six weeks.

    Wild yam root is a classic; it seems to me that the creams containing yam root would be best, since they put small dosages into the bloodstream. You put a dab on every day. There is a lot of difference in the quality of the different creams, so it's a good idea to look around.

    Black and blue cohosh are other classic herbs for women's hormones; they're often in blends. One I used for years is Dr. Christopher's Change O Life, now called Changease, available at a discount here: http://www.drchristophersherbs.com/collections/dr-christophers-bulk-formulas

    The reason I would recommend trying plant hormones over synthetic ones is that there are many ingredients in a plant that work with that one ingredient science calls "active". Most herbalists know about this synergistic effect; the many constituents of the plant work together and provide a smoother ride. When we take synthetic hormones, we throw our endocrine systems out of balance. Since our endocrine systems are already messed up, a gentler approach might work better.

    If it were me, I'd experiment with maca or Dr. Chang's herbs first, and just use a little. Remember that herbs work more slowly than synthetics; stay at the same dose for a month before you decide it isn't doing anything.

    How any of this plays out with CFS is anybody's guess; I don't even think an experienced herbalist would know (unless they happened to have a lot of background dealing with our illness). I do think it makes sense to try plant hormones first, because they are less disturbing to the system.

    This is an area I haven't addressed much; I'm glad you made me think about it, kat!
  6. dotdot

    dotdot

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    M.E. after myomectomy - fibroid surgery

    I've been diagnosed as having M.E. since '99... This illness appeared immediately after I had surgery to remove a fibroid. Literally, I had surgery, came round for a few minutes in the ward and felt brilliant, fell asleep and woke up again a couple of hours later feeling terrible. Have generally felt appalling ever since.

    Err, except for a few months in 2008. Woke up one day in early May, felt shockingly great in every way, but within a couple of weeks I'd started to slowly slide again. The 'slide' lasted for months, but there were plateaus that lasted weeks - I was functioning well, but not optimally, until September/October, but by February 2009 my symptoms were all back at full whack, with bonus symptoms added (back pain, vertigo, oedema, constant muscle spasms in calf, nose bleeds, v high blood pressure).

    My doc did a batch of blood tests, in May 2008, after I went to her to find out if she could figure out why I was well (!). The only thing that showed up was high FSH - indicating Menopause.
    Was referred to a Menopause Clinic and they felt that all my symptoms indicated sudden Early Menopause after the fibroid op - bloods came back with very low Oestrogen and testosterone levels.

    Started HRT and, initially, I think it did help delay the 'slide' back into illness, but the HRT levels I was on (Oestrogen, Progesterone and Testosterone) that were most effective were regarded as too high, especially with the (uncontrollable) high blood pressure, so they were reduced - contributing, I think, to the speedy resumption of previous ill health.

    Since then, I've managed to get the blood pressure tamed a bit - primarily by ditching some of the meds! Am now on Candesarten and Proprolol... and 3 raw garlic cloves a day, lol.
    Will be back at the Menopause Clinic in a couple of weeks, so will discuss the possibility of increasing HRT dosages again.

    One other thing, since my last Meno Clinic visit, I've had a batch of hormone tests done by an Endocrinologist, the only things of interest are low Vit D3 and Androstenedione, and high PTH (parathyroid - which is prob due to the low Vit D3). I guess the thing to investigate is the low Andro.
    The Meno Clinic says a lot of their patients diagnosed as having M.E., are actually experiencing huge, undiagnosed, hormone imbalances.

    Apart from the Fibroid surgery, I had a very bad dose of Toxoplasmosis in the mid-80's - very odd immune reaction and pretty ill for more than a year. Never felt completely recovered.

    Definitely hormones play a big part in my version of this illness, but I suspect that something was already a bit messed up, which is why I had the Toxo so badly. Though, maybe even that was hormonally mediated? Thinking about it, my libido disappeared when I was about 28, until the May 2008 episode when it rather shockingly re-appeared, lol... but it's gone again now :(

    trace
  7. Becky

    Becky

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    Lakewood Ranch Fl
    Having extremely painful periods all of my life, the hysterectomy was a great relief. I am on estro-test which is an estrogen testosterone combo and works well for me. I am also on compounded thyroid. It is so important to have hormone balance !

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