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Toronto Member in Phase 2

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Posted: Thu Jul 20th, 2006 14:55 |
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| Are there any supplements or medications for menopause (symptom relief ) that are compatible with MP?
____________________ Sarcoid lungs May 2005 D125- 43, D25 - 8.8. July 08 25D 12.8 125D 24.Nov 08 D25 10.8,D125 52.5 ,Trazadone,Tylenol 1&3, Ventolin, April 09 D25 6.8
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Carole Board Staff

| Joined: | Tue Jul 20th, 2004 |
| Location: | Indiana USA |
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Posted: Thu Jul 20th, 2006 22:43 |
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Hello, Toronto--
I assume that you are talking about "hot flashes." I feel brief "flashes of warmth" at different times of the day and night, with no particular warning or pattern. I have come to believe that these are herx-related as the bacteria succumb to the protocol.
Are there other symptoms that you are referring to? As you are probably aware, it is still suggested that supplements be avoided while your body is working hard to destroy the pathogens.
Take care! . . . Carole 
____________________ PWC 50+ yrs| 20+ CFS FM Pituitary Thyroid IBS Cardiac OA Migraines +ANA Osteoporosis 2/04 Mediastinoscopy ~Sarc Story |1/04 1/06: 125D=85,34; 25D=41,14| AC
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Toronto Member in Phase 2

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Posted: Fri Jul 21st, 2006 12:27 |
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Thanks for your reply Carol. If it were just hot flashes no problem. It's the insomnia, itchy skin and PMS like symptoms that are driving me mad. The other day I was so agitated I could have gone bear hunting with a whip! Hard to sort out what is herx, and what is menopause. Benicar doesn't help thus I assume it is not a herx. Please advise. Thanks for your help!
____________________ Sarcoid lungs May 2005 D125- 43, D25 - 8.8. July 08 25D 12.8 125D 24.Nov 08 D25 10.8,D125 52.5 ,Trazadone,Tylenol 1&3, Ventolin, April 09 D25 6.8
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Sandy M Member in Phase 3

| Joined: | Mon Jul 19th, 2004 |
| Location: | Eugene, Oregon USA |
| Posts: | 207 |
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Posted: Fri Jul 21st, 2006 13:02 |
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Hi Toronto, Just wanted to tell you that all you described have been herx symptoms for me. I have been through menopause and hysterectomy. I really enjoyed the imagery of hunting with the whip! Unfortunately the whip was usually my tongue and temper.
Hope you can find relief soon. Have you access to Valium, that one might help. Good hunting (the bugs!). Sandy
____________________ Sarcoidois/lung,lymph,skin, suspect heart & kidney, MP2/04 MPh2 9/04, ph2 5/05, Ph3 12/9/05, light r/t work, cover up, NoIRs, low lux home, Percocet, Zyrtec, Ibuprofen
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Aussie Barb Member in Phase 3

| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
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Posted: Fri Jul 21st, 2006 16:04 |
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Deborah
as per the FAQ My Herxheimer reaction is too strong. What should I do?
Medication adjustment Option/s to discuss with your Dr:
1. Benicar: take extra half tablet (20mg) any time during cycle, or adjust dosage to 40mg Q4H.
2. Quercetin: may be helpful.
3. Minocycline: schedule can be extended to assess symptoms level rising or falling..
or Mino dose can be decreased and continued,
(or if suitable as it is for some but isnt good for you so far, lower dose more frequent Mino dosing used. ie Mino 25mg Q6H or 50mg Q12H or daily.)
4. Phase 2 & 3: 2nd and 3rd Antibiotics: can be stopped, schedules extended or dose decreased.
* Rx meds for anxietyand/or usual pain meds may help also. see How can I control my anxiety and depression?
Why should I avoid hormone replacement medication?
To discuss your meds in more detail, we can do so at your progress report.
Thanks, all best, Barb ...
____________________ Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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carol Moderator

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Posted: Fri Jul 21st, 2006 18:42 |
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Hi Toronto:
It sounds like you are pretty sure these are menopause symptoms. I used a bioidentical topical hormone cream for several years which worked great for my menopause symptoms. But when Dr Marshall's molecular modeling work showed that there could be competition between these hormones and benicar for the VDR, I decided to wean off the cream. This was no fun at all! But I'm glad I did it.
So maybe the best way is just to tough this out, as unpleasant as it is . I know you do not want to do anything to retard your healing.
Carol
____________________ rheumatoid arthritis dx '96...started MP 8/11/04...initial D tests: 25-D=32; 1,25-D=65...10/07 entered Phase 5...Xodol daily, Valium and Tramadol occasionally, all for pain...last 25-D=7 (10/09)...Benicar only, no abx
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Claudia Member in Phase 3

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Posted: Mon Jul 24th, 2006 06:33 |
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Hi - My hot flashes came back again when i went on the MP, so i think it's a readjustment of hormones thing.
Just a note about the inter-connectedness of the endocrine system: I note that whenever my bladder is full and just as I get that "I've gotta go" feeling, I will get a hot flush. Anybody else get this? Curious!
Claudia
____________________ MP Phase1 23Mar_06; Phase2 July 10_06; Phase3 Nov 4_06. Dx Thyroiditis (Thyroxine); arthritis; glaucoma; CFS (1988-92);Kidney & bladder probs. Feb06 1,25D=43.3; Aug07 1,25D=27.5; Feb06 25D=44; Aug07 25D=28; Nov07 25D=36; Mar08 25D=16.4
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Carole Board Staff

| Joined: | Tue Jul 20th, 2004 |
| Location: | Indiana USA |
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Posted: Mon Jul 24th, 2006 12:34 |
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Hello, Claudia!
One at a time is quite enough for those of us who experience both kinds of herx! Thankfully, the simultaneous whammy has not occurred for me!
Best wishes as you progress! Take care! . . . Carole 
____________________ PWC 50+ yrs| 20+ CFS FM Pituitary Thyroid IBS Cardiac OA Migraines +ANA Osteoporosis 2/04 Mediastinoscopy ~Sarc Story |1/04 1/06: 125D=85,34; 25D=41,14| AC
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Suzanne Member in Phase 3

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Posted: Thu Jul 27th, 2006 06:39 |
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I, too, found that when I started the MP my 'peri-menopausal' symptoms increased. I guess I just thought it was the hormone readjustment too. I have had the insomnia but the mino also makes me tired...so, I finally decided to take the mino with my midnight dose of beni. It seems to be decreasing my tiredness during the day and I haven't had the insomnia as badly. My family tell me I'm 'slightly' less iritable!
So glad you ladies started this topic; I've had some of these same questions since I started. Thanks for all the sharing.
____________________ Sarc 1990| D1,25=38; D25=19 MP 2/06| Detrol LA Allegra Prevacid| 6/06 D25=14| Ph3 12/06| 5/08 D25=5 Aug08 25D18 Nov08 25D11 Apr09 25D8 Jan10 25D <4
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Claudia Member in Phase 3

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Posted: Sun Jul 30th, 2006 05:15 |
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Well, let's just call this the "secret women's business" forum, shall we? (That's what the Aboriginal women have in Australia... stuff that only women are allowed to talk about.) 
Here are two more "women's business" items which have changed for me since starting the MP.
1 - no more vaginal dryness.
2 - my left breast, which never grew as large and never gave as much milk as my right breast when I breastfed my children, suddenly evened-out with my right one! That's right. I swear it. I'm not sure if the right one might have been "swollen" and shrank, or if the left one grew. But I am convinced it grew... just about a half a cup size. If only I could produce milk again, to check out if it would become fuller, too! I think any young woman who has had the uneven milk production prior to MP were to have another baby post-MP, should make a note of this and see if the same thing happens to her.
Claudia
____________________ MP Phase1 23Mar_06; Phase2 July 10_06; Phase3 Nov 4_06. Dx Thyroiditis (Thyroxine); arthritis; glaucoma; CFS (1988-92);Kidney & bladder probs. Feb06 1,25D=43.3; Aug07 1,25D=27.5; Feb06 25D=44; Aug07 25D=28; Nov07 25D=36; Mar08 25D=16.4
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prugg21 Health Professional

| Joined: | Wed Mar 15th, 2006 |
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Posted: Sun Jul 30th, 2006 07:49 |
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I'm glad this topic was started too! I had a sudden earlyish menopause 4 yrs ago, hot flashes ended 2 yrs pre-MP and I suddenly have them back again. Not as many as before. Don't need to urinate, but just have an all over sick feeling before one comes on.
Wish I could say I've had some type of secret womens business improvements, but the vaginal dryness and burning are even worse since starting the MP 4 mos ago for me, and they were already off the charts bad.
Also, strangely I had insomnia for yrs before menopause, then suddenly could sleep quite well after my periods ceased, which no one has ever heard of. I had tested allergic to my own hormones, progesterone especially. Now, I am having more trouble than ever with insomnia. It's quite possible it could be from all the hormonal rearranging. I have high hopes that the MP will turn all this around someday soon.
Pam
____________________ MCS/CFS/FM,22+yrs,Gerd,migraines,insomnia,avoiding light & D,NoIRS,benicar 3/30/06 40mg Q4-6H,mino,4/18/06,mod/ph2-
10/17/06,probx,estriol, 3/06-25D=27,9/06-25D=26,11/06-25D=21,4/07-25D=22,7/07-25D=19
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Claudia Member in Phase 3

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Posted: Mon Jul 31st, 2006 04:54 |
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Hi Mellie, Pam! Welcome to my hen-house 
I get that "feeling sick/nausea" feeling just prior to hot-flash, too!
I think the chicken/egg story is a hard one... if anything, I think it's a bit of each. Going through menopause is stressful and ANY stress makes any disease worse, but particularly if it's DERANGED HORMONES!
But the inflammatory diseases are so tied up with the endocrine system that they could be bringing on early menopause of course, and making symptoms worse. hmmmm.
The thing that was important to me was this:
Because I was going through "the change" at the same time as I was getting very ill (hypo-thyroid) I didn't recognise that I actually was ill. You see, I was blaming all my symptoms on the menopause. I was trying to "age gracefully" and not complain, while I was thinking to myself, "groan! this getting old really sucks! oh, my aching bones... so this is what menopause is like! blah..." etc. Then when the doctor found I was hypo- he started me on thyroid replacement and in a few days I was like a new woman! Just one without periods! I HAD been aging gracefully afterall, but also had this autoimmune thyroid disease.
The lesson is - we need to be aware and able to differentiate our sx and the causes.
Claudia
____________________ MP Phase1 23Mar_06; Phase2 July 10_06; Phase3 Nov 4_06. Dx Thyroiditis (Thyroxine); arthritis; glaucoma; CFS (1988-92);Kidney & bladder probs. Feb06 1,25D=43.3; Aug07 1,25D=27.5; Feb06 25D=44; Aug07 25D=28; Nov07 25D=36; Mar08 25D=16.4
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prugg21 Health Professional

| Joined: | Wed Mar 15th, 2006 |
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Posted: Tue Aug 1st, 2006 07:46 |
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Hi Toronto,
I've been thinking about what I did when the change hit. Emotionally, I had off and on depression and weepiness more than typical PMS irritability. I found that avoidance of processed or chemicalized foods and chemical inhalants helped me a lot. It helped to have friends who'd been through it or were going through it to talk to and therefore, could understand and empathize. I also took a homeopathic remedy occasionally for the depression, but I don't know if this is advisable on the MP. You should check with your doctor or a board moderator on that.
My illness came many yrs before menopause. I felt ill so much that I could not really tell when I'd actually come down with a virus or flu. So, I would joke that I wouldn't be able to tell when I got to menopause. That turned out to be so untrue. But, there also ended up being benefits for me like better sleep and less headaches. And while you're going through it, it seems like a long time, but in retrospect the worst of it passed in a yr for me. I really think watching the diet and environmental exposures made the transition easier.
Best,
Pam
____________________ MCS/CFS/FM,22+yrs,Gerd,migraines,insomnia,avoiding light & D,NoIRS,benicar 3/30/06 40mg Q4-6H,mino,4/18/06,mod/ph2-
10/17/06,probx,estriol, 3/06-25D=27,9/06-25D=26,11/06-25D=21,4/07-25D=22,7/07-25D=19
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Julia Member in Phase 3

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Posted: Tue Aug 1st, 2006 14:01 |
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the worst of it passed in a yr for me
Just in case anyone gets too sanguine I should prick that bubble and add that it was more like ten years for me and at least one friend! When I was diagnosed later with sarc, and realised that it affected hormones, I thought "so that's why I've always had dodgy hormones that never seemed to get anything quite right!"
I say this, not to discourage anyone, but because I felt that I wouldn't have been so bothered about it if someone had told me that it can last that long.
And then when the hot flushes of menopause were well in the past, the hot flushes of sarc began... *sigh*
Julia 
P.S. I agree with you, Pam, about staying healthy. I never had any serious problems - not enough to approach a doctor about - during those ten years. Fresh fruit and veg, and fresh air and exercise!
P.P.S. The hot flushes of sarc have been gone a long time now. Good old MP! 
Last edited on Tue Aug 1st, 2006 14:06 by Julia
____________________ Sarc/uveitis/hypercalcaemia/ankle osteoarthritis/eczema. MP May04. 25D Apr09:5.6. Life is good! Julia's story
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Claudia Member in Phase 3

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Posted: Tue Dec 26th, 2006 11:44 |
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It just occurred to me - if the symptoms are the same for anyone with Th1 disease, why don't MEN get hot flushes?! 
____________________ MP Phase1 23Mar_06; Phase2 July 10_06; Phase3 Nov 4_06. Dx Thyroiditis (Thyroxine); arthritis; glaucoma; CFS (1988-92);Kidney & bladder probs. Feb06 1,25D=43.3; Aug07 1,25D=27.5; Feb06 25D=44; Aug07 25D=28; Nov07 25D=36; Mar08 25D=16.4
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jcwat101 Research Professional

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Posted: Tue Dec 26th, 2006 13:57 |
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I just began having menopausal symptoms. They were quite distinct and different from my immunopathology symptoms and the worst to deal with were not the hot flashes per se, but mood and sleep disturbances.
I began some bi est bioidentical hormones and some oral progesterone and they take care of the worst symptoms (I still get slight warm spells, but they don't get bad). The hormones did not affect my immmunopathology symptoms at all. I have enough experience with both to know the difference.
I find that if I were to not use the hormones, I would have had to slow my progress on the MP because I could tolerate less immunopathology reactions if I also had to tolerate the menopausal symptoms.
I am keeping the hormone use at the minimum to deal with intolerable symptoms, as the FAQ advises.
I feel confident that when I get healthier on the MP, I will no longer need the hormones due to better overall health and endocrine functioning.
Joyce Waterhouse
Last edited on Tue Dec 26th, 2006 13:59 by jcwat101
____________________ 20 yrs with CFS/FM/Lyme/IBS, food sensitivities; 1,25D/25D 8/04:64/11 http://SynergyHN.com
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jcwat101 Research Professional

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Posted: Wed Dec 27th, 2006 18:16 |
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Someone PMed me asking what hormones I use and so I thought I would share that information here, in case anyone else is wondering too.
I'm using a cream with 2 forms of estrogen, (bi est -- with estradiol and estriol) and oral natural progesterone. I get it from University Compounding Pharmacy in San Diego (800-985-8065). Another source for the natural
"bioidentical" hormones (which some think have less risk of causing breast cancer and other side effects) is Women's International Pharmacy and there are some other online sites that sell natural bioidentical hormones if you want to look at various places online. Progestins usually refer to the synthetic progesterone and some think they pose more risk than the natural progesterone.
More research is needed as to what level of risk there is from the bioidentical hormones, but I feel, for myself, that it is probably better to go with the bioidentical hormones, if I must use them. And I hope I can avoid them later, when the MP improves my health further. There are no guarantees regarding them being better than the synthetics, which have been linked to a number of negative effects, like cancer.
I am currently getting by with 1/4 tsp. of the bi est cream and experimenting with 50 to 100 mg or the progesterone daily. The 1/4 tsp bi est gives 1 mg estradiol (E2) and 4 mg estriol. The estradiol is the most potent part with regard to hot flashes and sleep disturbances, apparently. My prescription allows for it to be used twice daily, but once daily seems to be enough to get rid of the worst of the symptoms -- I may experiment with using 1/8 tsp to see if that will be enough.
Joyce Waterhouse
P.S. The natural hormones are rather expensive, but if you hunt around online you may find less expensive sources
Last edited on Wed Dec 27th, 2006 18:18 by jcwat101
____________________ 20 yrs with CFS/FM/Lyme/IBS, food sensitivities; 1,25D/25D 8/04:64/11 http://SynergyHN.com
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Kas Member in Phase 2

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Posted: Wed Dec 27th, 2006 23:59 |
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I have written about this before, but I am using bioidentical progesterone cream (6% in vanishing cream), which is made up in a compounding pharmacy here in Toronto. Cost for a jar which lasts me about three months, is $42, which includes the dispensing fee. Not covered, though, by private insurance in my case, but the relief it gives, is well worth going out for one less meal!
I was concerned about the transdermal cream interacting with my MP meds, but when I was off it ( and suffering like crazy from painful breasts), my herxes were no different to being on it and I could cope better without added pain/dsicomfort. Off the cream, I started to have spotting and estrogen domiance showed in my uterine biospy, on it, all that has settled down and periods are easier, more regular and without pain. I am definitely going to stay on it for the short- term, at least. I use it for three weeks of each cycle and have one or two off during my period, or if it is late, I just take myself off it after three weeks.
I have also just recently started these perimenopausal symptoms, but luckily, I have never experienced a hot flash/ flush or whatever it is called. I hope I am spared that, at least!! I figure I am about a year or two away from menopause, so I am hoping that my sarc cure and my new stage of life arrive together - what a blast that is going to be!!!!!
____________________ Sarc Dx by splenectomy 03- Lungs, lymph nodes, liver. Non MP meds: natural progesterone cream three weeks a month; cal/mag; probiotics; milk thistle daily; cranberry caps prn; quercetin prn.Noirs outdoors and under flourescent work lights, Spectra 3 cream
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Kas Member in Phase 2

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Posted: Thu Dec 28th, 2006 00:07 |
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Sorry girls, I forgot to mention that I use 1/4 tsp of the cream, rubbed into any unhairy part of the body, twice a day. I try and rotate where I use it, but apparently it is good to use on the face, the hands, the boobs, abdomen, thighs, neck and feet.
I have read a lot about bioidentical hormones and read Dr John Lee's book. Dr Chrisitane Northrup also recommends the natural progesterone to perimenopausal women and my own alternative ob/gyn MD here, is a world expert on the matter and has produced numerous books and CD's on the subject. He is sort of the Dr M of natural hormones!
Remember, that perimenopause is a time of great hormonal fluctuations, and it is at this time especially, that many women are estrogen dominant, which can lead to breast, uterine etc cancers. If you use the natural progesterone, you are balancing things out, which can only be good for you, the way I see it.
____________________ Sarc Dx by splenectomy 03- Lungs, lymph nodes, liver. Non MP meds: natural progesterone cream three weeks a month; cal/mag; probiotics; milk thistle daily; cranberry caps prn; quercetin prn.Noirs outdoors and under flourescent work lights, Spectra 3 cream
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jcwat101 Research Professional

| Joined: | Tue Jul 20th, 2004 |
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Posted: Mon Jan 15th, 2007 19:08 |
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I have been reading a book by Dr. John R. Lee regarding menopause and hormone testing, in particular on bioidentical hormones. You can see his web site and list of books at: http://www.johnleemd.com . It seems reasonable to me that bioidentical hormones (identical in molecular structure to our own body's hormones) would be safer and more effective than synthetic progestins and horse-derived estrogens that have been studied most intensively. The synthetic, non-bioidentical ones are those that were linked to cancer and heart disease and other problems in the Women's Health Initiative study.
Of course, opponents of the bioidentical hormones say that it has not been proven that they are any safer than the synthetic ones. I have been reading some of Dr. Lee's book and it does seem that there is evidence the bioidentical hormones are safer and more effective, but probably not enough evidence to be really certain. One would need another one of those several year long, very large studies to really know.
One thing his book lists that I think is interesting is symptoms of excess progesterone. One of the symptoms he mentions is Candida overgrowth. I remember years ago, I experienced Candida problems when I added progesterone. Of course, the right amount of progesterone can be very helpful -- but it is interesting to know some of the signs of too much (he lists: lethargy, edema, Candida, bloating, lowered libido, mild depression and symptoms of estrogen deficiency -- he says too much can downregulate estrogen receptors)
Anyway, I tend to think that Dr. Lee's information would probably be the most reliable if one wants to pursue the bioidentical hormones. I am by no means an expert on it and have only had time so far to skim parts of his book, but he seems to me to be the doctor with the most experience with the subject.
As has been said before (see my prior posts and those of others), I would think one would use the least amount of the hormones one could to keep the symptoms in the tolerable range and that probably eventually the MP would get us so well, we will no longer need them. Some do use saliva testing as well -- see Dr. Lee's information if you want more details. I have not done so myself at this point.
Interestingly, I'm now more in the category of perimenopause (near menopause) than actual menopausal. I had been on a birth control pill and when I stopped it, began having menopausal symptoms. I then began the hormone use, but a month or two later, I began having periods again. Based on my basal temperature levels, in fact, I believe I even ovulated this month. So, in the coming month, I will see if I can get by without the bioidentical estrogen and progesterone I had been using to keep the hot flashes and other symptoms in check. I'm hoping I won't need them.
Joyce WaterhouseLast edited on Mon Jan 15th, 2007 21:41 by jcwat101
____________________ 20 yrs with CFS/FM/Lyme/IBS, food sensitivities; 1,25D/25D 8/04:64/11 http://SynergyHN.com
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