posted
Dear Lyme Friends, I finally got some answers to the misery I experience. Late in March, I had a saliva test done and sent to ZRT Laboratory. They are very thorough, and my estrogen was 1.3 (on the low end of normal for a menstruating woman), but my progesterone was very low at 8L. The compounding pharmacy prepared it, and I have been administering the bio-identical hormone cream at the same time each day. It is a bit perplexing to me that my mother's dosage is twice the size of mine. By the way, my dosage is 5% at 0.5 ml per day. Mom's progesterone was a little higher than mine.
She seems to be improving more than I am. The pharmacist said that when your ovaries are still present, the dosage needs to be less than it is for a menopausal or post-menopausal woman. The heavy bleeding is off and on all the time, and the menstrual cramps have been worse than before I went on the Depo-Provera over ten years ago! I went off of it in December, and by March the pain became so excruciating that even the Promethazine barely did anything for the nausea induced by the cramps that kept me laid up on the sofa for several days.
Food does not seem to matter, but the IBS always acts up whenever the menses occur. My ovaries also are painful. Having no insurance and terrified, I called an OB/GYN to see about an appointment. They told me it would be possibly as high as $1,000 if a biopsy and ultrasound need done! I have no income, and my parents are not receiving the unemployment benefit for some reason. My grandfather has been supporting us, but has his and my grandmother with Alzheimer's to take care of.
On this budget, going all organic food-wise does not appear possible. I have been making an effort not to drink out of plastic bottles and we just got some Noah's Naturals Face Creams. I fear that the xenoestrogens and hormones in the food are the cause of these problems. I just do not know how we could afford to buy all natural stuff. Please help! I do not want to have a hysterectomy!
lymielauren28
Frequent Contributor (1K+ posts)
Member # 13742
posted
Jin, call your local health department or family planning clinic - they provide these types of services to women who are low income or don't have health insurance.
Are you still taking the progesterone cream? I tried that, but like you it made my hormones even more out of wack, so I quit. Hang in there - you'll get through it!
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
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lymielauren28
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Member # 13742
posted
Also want to add that I strongly believe TBI's are at the root of most cases of endometriosis. You can take all the hormones in the world and avoid xenoestrogens - and that may help to some degree - but until you clear yourself of your infections or at least get them down to a manageable level you will still suffer from all the female problems. That was my experience anyways...
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
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posted
Jin Are you in peri-menopause? I had a test years ago because my issues were severe. I did the saliva test with ZRT as well. My results were similar to yours ... In hindsight, I don't put much stock in that test. For one thing, hormones fluctuate from day to day, even hour to hour. You can't determine hormonal imbalance from one saliva test. Progesterone never helped me. In fact, the cream isn't well absorbed. When my doctor put me on the real thing (Prometrium -- natural oral progesterone in capsule form) I got the WORST migraine ever. If you are peri-menopausal, your hormone levels are going to be erratic. Your periods can become much heavier with clotting, pain and cramping, before they finally begin to lighten up. I had a delayed menopause and had migraines for 12 years during peri-menopausal hell. One month I tried estrogen in low doses. It kept the migraine at bay. Then, my gyn said I had to have the Progesterone with it, which I could not tolerate.
Thyroid problems can cause heavy periods or no periods at all ... My "IBS" was always worse during a cycle. I also was diagnosed with Fibro. I developed gluten intolerance also.
As lymielauren28 indicated, TBI's can upset the whole body, endocrine, metabolic, circulatory, etc., so your symptoms might be more severe than they would ordinarily be because of infection.
Another thing I would like to suggest is that you be tested for parasites. "IBS" is usually an infection, perhaps SIBO, and resolving the intestinal issues might significantly help the endocrine issues and pain.
I just finally had a test, which revealed a parasite. I'm sure it has been with me a long time based on health history and symptoms.
Posts: 277 | From Pennsylvania | Registered: Apr 2010
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massman
Unregistered
posted
Sounds like you have a few things going on at the same time and they are aggravating each other.
And inflammation in one organ can make it and others around it much more sensitive and reactive.
One doc that has studied a lot with Dr. Klinghardt states that 80% of ovary problems actually are from other organs in the endocrine (hormone) system.
And saliva testing is much better than blood testing only if samples are taken every 3 days for your entire period, saved in your refrigerator then mailed to the lab. A single sample is useless. How much has your doc worked with hormones with success ?
So...I would suggest finding a "natural" doc that works with hormonal imbalances and TBDs. I may be able to help you find one in your area. I have been working with hormones + studying them for over 15 years. -------------------------------------------------
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Dear lymielauren28, I am trying to apply for state coverage now. I was already denied disability last year. Dr. C. in MO would be ideal if it were not for the cost. There is the clinic for low income people downtown, so I may have to go to that place. Not many options exist right now.
Sorry to hear the hormones did not work for you. I am not sure what to think about my situation right now. It may be fibroids in my uterus or something. Ultrasounds in the past did not reveal endometriosis. As far as having Lyme goes, my tests were not definitive enough. Until co-infections can be tested for, I worry nothing will be verified. I only had two protein bands show, and they could be cross-reactive with Candida and gum disease, both of which I have.
Dear Marrit, I am only 27, so peri-menopause is not the cause. Issues existed from the time menses began when I was a teenager. They were better on the Depo-Provera, but the horror stories about the side effects were terrifying. My teeth began chipping off in my 20s, despite having healthy teeth in my childhood and teens. None of this makes any sense!
Dad said bad teeth run in his family, but it just seems odd that someone would start having bad teeth in their 20s. Dad had a mouth full of fillings by the time he was 10 years-old. I never had a cavity until the age of 22. What is going on? You mentioned migraines. Guess what else runs in the family? An overactive Thyroid is likely adding to the mix.
As stated earlier, Lyme has not necessarily been confirmed yet. Still, it would explain a lot. Most people do not think it is due to having an excellent memory and Math skills. I was diagnosed with Fibromyalgia some years ago, but it has improved some lately. I had been on a strict gluten-free diet up until late last year, and was doing well up until the shot wore off. In fact, the yeast issue has improved slightly due to being able to eat less of the unhealthy carbohydrates.
You would not believe how many carbohydrates I have to eat to get my blood sugar up to normal. Watching my fat intake is necessary due to the gallbladder removal. Adrenal Gland Exhaustion is another good possibility, but testing is out of reach with no money. That is awful about the parasites. A friend recommended Humaworm, which helped her remove a tapeworm six feet long!
Dear massman, More than one issue appears to be occurring, as you said. They all irritate each other. That is interesting about Dr. K stressing the importance of the endocrine system being dependent upon all hormones working properly. They all are impacted by the others. When one is out of sorts, they all are.
Consecutive testing is more accurate, but most doctors do not want to bother with it. Right now, my cycle is off and on so much that no ideal time for collection exists. I sat down to use the restroom and the seat had blood all over it and in the toilet bowl, and even my underwear in the split second I stood up. Mom said she went through all of this right before her hysterectomy. Although my physician deals with chelation and some other alternative treatments, I am not sure as to how informed she is on hormones.
So far, the only naturopath I found in town did not even return my call. Things feel so hopeless right now. Money would solve a lot of the trouble, but no one will hire me due to the college I attended ruining my credit and refusing to give me my degree. Incidentally, I now must legally pursue this. So, I am in the midst of studying, gathering all of the paperwork to prove I was defrauded (they are under investigation for misappropriation of funds for the same thing they did to me). Rip-Off Report has an entire page on the university.
i don't have time to read through all the replies already posted so i apologize if someone else has already said this, but here goes:
i am 27 and my body basically stopped making progesterone years ago. when i got tested my levels were EXTREMELY low. i tried the progesterone cream and it didn't really help me. my breakthrough occurred when i started taking bioidentical progesterone orally. i take 2 caps every day, except for 5 days when i have my period.
this has helped my symptoms and quality of life so greatly, i cannot begin to describe how much better i feel on the progesterone.
also, i have heard from many doctors that the saliva testing is not accurate. i know that people are somewhat polarized on this issue, but you may want to look into blood testing. i always had my levels checked with blood tests and i have had much success with HRT this way.
if i were you i wouldn't write off the progesterone entirely.
transdermal cream failed in my case, as did sublingual tablets.
the progesterone pills have been a lifesaver.
before i took progesterone my periods were horribly heavy, i was constantly nauseated, had migraines, ocular migraines, was in a constant state of extreme anxiety, had tons of dizziness, acne, and lots of other neuro problems. basically all my lyme symptoms were far worse.
the hormone stuff can be a puzzle to figure out. it can take a lot of trial and error. it is more an art than a science, as my doctor says. i take a very high dose for someone my age, but i do great on it.
i would go so far as to say that the oral progesterone has given me my life back.
-------------------- Symptoms since age 4 IGM positive Western Blot (Bb) PCR positive Spiro Stat (Anaplasma) Suspect babs and bart Posts: 226 | From Currently in Los Angeles, originally from Malvern, PA. | Registered: Feb 2010
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
Sorry you are going through this, Jin. I had very bad cramps most of my life. I don't want to go through the whole history here for the world to see.
Anyway, I have been doing pretty well with an herbal female hormone blend. You can find them at most health food or vitamin stores, It's not expensive. I got one by a company called Solaray.
I tried almost everything in the book - bio-identical hormones, drugs, massage, acupuncture, physical therapy, castor oil packs... & read lots of stuff. I don't think it's a good idea to take birth control pills to get rid of cramps. I did that for a while & it was great to not be going through all of the pain but it had side effects.
I haven't tried the progesterone pills but the bio-identical stuff didn't work for me. I'm 48 - so, I've been coping for a while with the horror of it. I understand.
Maybe try the herbs & see if they help. I also take pain meds like Vicodin. That's the only thing that seems to help me. I had bad cramps from day one. Lyme & co-infections probably makes everything worse, though. You can have bad menstrual problems without the Lyme, too.
The environment is really messed up with chemicals & xenoestrogens. You are not alone. Many women go through this & it seems like all they can say is to get your uterus removed... I think it's there for a reason, though.
Anyway- try to avoid the low cost clinics if possible. They are awful & depressing. To me, the herbs are the best bet.
Also try doing some liver detox. Your liver controls estrogen production.
posted
Dear lajamur, We are the same age! Progesterone levels being so low would explain why the entire family has had issues with this. I have not discontinued the progesterone. The pharmacy said they usually give it six weeks to work. There seems to have been a slight improvement lately. Hopefully, that will continue.
I had no choice but to do saliva testing, since that was all I could afford. The last time I had bloodwork done at the hospital, they charged me $350! I cannot afford that. It is so frustrating and confusing, because I have heard so many conflicting details about the hormone testing. Just as many people say hormone testing through blood is less accurate. Honestly, the medical community never seems to know anything for sure.
All of the symptoms you listed are my primary issues. The nausea and excruciating abdominal cramps are very debilitating. Occular migraines may be something I have as well aside from the regular ones. Do you see little sparkling or glittery lights sometimes? I also have acne all over my face, under my jawline, on my chest, back, and even my nape and neck!
Your story certainly is encouraging. It is nice to hear there could be a light at the end of this tunnel. Is your progesterone bio-identical, or is it a progestin? Those are not quite the same thing. Progestins are not natural like the bio-identical kind.
Dear sparkle7, Solaray is a great brand. When my Thyroid was slow, I took their Rosemary Leaf Extract and Ashwaghanda. The healthfood store clerks are wonderful where I go. They are not there just to sell you something. If they think a product is healthy, they will recommend it.
You are right at the peri-menopause age. That is no fun! My aunt has been suffering for quite some time with those issues. I too, have had cramps from the beginning. I used to think it was just part of being a woman, until I found out others did not suffer like that.
I can see about the herbs at the healthfood store. Vicodin and other pain medications are addictive, and the side-effects are too frightening. I do have one of the rice-filled microwaveable packs called Bed Buddy. It helps. So does rocking back and forth for some odd reason. As far as I know, Lyme is not extremely likely at this point. Still, additional testing is needed to prove that.
Yes, all of the nasty chemicals in food and everything is really problematic. Avoiding a hysterectomy is best. Mom suffered for years. No one could figure out what she had wrong either. After her hysterectomy, she still felt awful. I know the low-cost clinics will just want to put me on more birth control pills.
One of my best friends is in nursing school, and she too feels they are dangerous. She said there were a couple of young women our age in the ER who had suffered strokes or heart attacks. She really believes it is due to them being on birth control pills. Xenoestrogens are best avoided. I took birth control pills for the cyst I had as a teenager, and then developed four more in less than a year. What does that tell you?
Liver detox is something I know is important for a lot of reasons. I just am not sure how to go about it. Having a fragile system makes everything very difficult. Thank you for the link! One thing I know I can handle is drinking lemon water, but there is more that needs done.
the progesterone i take is most definitely bioidentical. i refuse to take those synthetic "frankenstein" hormones. it is not worth the increased risk of cancer, heart disease, and who knows what else.
i really suggest looking into the oral option if you don't start to see some good results with the transdermal cream. the pills are a lot better at crossing the blood brain barrier, which for me has been incredibly important. elevated levels of progesterone in my blood only doesn't do it for me -- i NEED the stuff in my brain.
as for ocular migraines, when my progesterone was too low and my estrogen too high, i used to wake up every morning with a weird grid-like pattern in my vision. it was exactly as if someone had overlaid a sheet of graph paper over my field of vision. very weird. i would also get migraines with aura -- flashing zigzag lights, "oriental carpet" patterns, etc.
as far as the acne goes, i fully sympathize. i used to have cystic acne all around my jawline and lower cheeks. now, after being on the progesterone for about 2 years, my skin is near perfect.
before i went on the oral progesterone my body was in crisis mode. my lyme symptoms were SO much worse. the progesterone has allowed my adrenals and CNS to slowly begin to heal. now i am addressing the underlying infection.
good luck with all of this and let me know if you have any other questions. i have been down this road and i know quite a lot about it all since i had to do such a huge amount of research when i was trying to figure out my own situation.
-------------------- Symptoms since age 4 IGM positive Western Blot (Bb) PCR positive Spiro Stat (Anaplasma) Suspect babs and bart Posts: 226 | From Currently in Los Angeles, originally from Malvern, PA. | Registered: Feb 2010
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
lajamur- I'm glad the bio-identical pills helped. It always good to find something that works. I'm a bit concerned about any hormones, though - even the bio-identical ones. There hasn't been any long term tests as to safety - so, it does concern me. At some point, you may want to try to find the root of the problem & try to balance things out.
jin- There's been alot of misinformation on pain medications. They are safe for many people & there's no risk of addiction when you are having pain (not just using them to get high). There are studies about it.
I have been taking Vicodin for many years as needed & I don't feel addicted in any way, shape or form. If I have serious pain - I take a 1/2 of a pill. I usually don't need more than that. If I need more I take another 1/2. When the pain goes away - I don't feel the need to take any more.
Pain can take so much of your life away. They really do help. There are clinics that specialize in pain management where you can go to get help with pain medications. Regular doctors do not want to handle it in many cases because they either are mis-informed or don't want the government hassling them about writing prescriptions.
Maybe try to see if you can find a pain clinic to get some help. There's one about 4 hours from where I live & they only charge about $50 for an appointment. I haven't gone there but I might if I want to switch doctors.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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i understand that no medication is risk-free. believe me, i have done everything i can to figure out the root of the problem. nothing has worked. as far as i can tell, my body simply stopped producing adequate amounts of progesterone when i was 18 or so. i'm hoping that treating lyme will finally solve this problem.
i know there haven't been long-term studies on the safety/effects of bioidenticals, but going without the supplemental progesterone is not an option for me. it's a quality of life issue. i went from being sick all the time and non-functional to feeling happy and normal and balanced. i literally went from 5 panic attacks per DAY to 2 or 3 per week, sometimes fewer. my dizziness, nausea, etc, improved, my migraines went away altogether, i was able to gain some much-needed weight, able to eat again without gagging, the constant, DRENCHING night sweats decreased dramatically.. you get the idea.
additionally, while the safety of bioidenticals hasn't been proven, there is nothing that DISproves their safety either, and they ARE chemically identical to the hormones produced by the human body.
also, bioidenticals are almost unquestionably safer than the synthetic hormones which so many women use.
i personally would rather be "artificially" balanced than be living in a perpetual state of estrogen dominance. estrogen dominance alone has been shown to increase cancer risk, and i have experienced how sick it can make you feel on a day to day basis.
i tried EVERYTHING to get my hormones to balance out naturally. i stopped using plastic containers, ate tons of cruciferous vegetables, exercised, ate raw, 100% organic, went gluten-free, casein-free... you name it, i tried it.
so, i think it's really an individual thing... and for some of us the bioidentical hormones are lifesaving. i don't know how i would have been able to keep my job, my relationship, or any semblance of physical health without them.
EDIT -- i just want to add that an excess of bioidentical estrogen would be risky just as an excess of natural, body-produced estrogen is risky. there is evidence, however, that biologically equivalent progesterone (NOT the synthetic progestins) may actually be protective when it comes to cancer.
-------------------- Symptoms since age 4 IGM positive Western Blot (Bb) PCR positive Spiro Stat (Anaplasma) Suspect babs and bart Posts: 226 | From Currently in Los Angeles, originally from Malvern, PA. | Registered: Feb 2010
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posted
Have a look at the KPU/HPU syndrome. My son developed a crumbling tooth and our LLMD said it was a sign of KPU.This can also be a genetic problem as well as one caused by Lyme, maybe the reason for "bad teeth in the family". We tested for it and yes his KPU/HPU level was very high. Do you have white spots on your nails too ? It is treated with supplements. Here is a link about it : http://lymelighters.org/uploads/012610_KPU_Forsgren_explore_18-6.pdfPosts: 174 | From UK | Registered: Oct 2009
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
lajamur- I really understand! Anything that actually works is a blessing... You are young, though. At some point, you may want to see if you can get the body to correct itself - if possible.
Doing a quick search, I found this article-
My Personal Journey of Healing Julia Chang, MSc
Estrogen dominance, womens' problems, amenorrhea, and menopause
"The hyperestrogenism occurs as a result of failure of hepatic removal of estrogens from the circulation"
It's really a complex subject. Interesting to note that some herbs do increase estrogen - which is what some of us do not want. So, you really do have to research everything if you go the herbal route.
I have researched bio-identical hormone treatment. I decided to try the herbs instead. At first, the BIHRT did seem to help me but it reached a plateau. At that point - it became too expensive for me with not enough results. I'm not against anything that works.
I just don't want to be a guinea pig & find out 10 years from now that what I was doing can cause cancer. This is the case for many things these days. We really have to be careful & protect ourselves. The agencies that are supposed to be protecting us are asleep at the wheel or worse. We have to do the research ourselves.
Good luck! I know this is a really tough issue.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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My pcp does my bioidentical hormones. A compounding pharmacy puts it together - in the form of a capsule, not a cream.
I have been much better with this. I also tried the creams and they didn't work. I read up on bio-identical hormones and, from what I read, getting them in the form of a capsule works far better than a cream. I take one each morning. My doc. adjusts the amount to how my hormone test comes out. I make sure my doc writes on the prescription that they do not put any dye in it either. Compounding pharmacies often use dyes so that they can tell it is mixed up well. Without the dye I have to give him a few extra days to mix it up, but I don't care. Dyes can cause other problems. He is very nice and always obliges.
-------------------- Dx with Lyme & homozygous for MTHFR. Antibiotics & nutritional IV's didn't help. Posts: 57 | From Kansas | Registered: Jun 2010
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massman
Unregistered
posted
LOL on the "bioidentical" term. And would really like answers to my questions.
The hormones your body makes are actually alive, right ?
So HOW can something mixed at a pharmacy actually be alive ?
That is what bioidentical means, doesn't it ? Biologically the same ? Actually alive and exactly the same ?
Close only counts in horseshoes + hand grenades.
Or..... how about healing the organs so they produce + balance the hormones ?
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what about those of us who have tried exhaustively to heal the organs that produce the hormones, but have had little to no success? that has been my experience. i have done herbs, dietary changes, detox, etc. nothing i did made any difference. my progesterone levels were those of a menopausal woman -- when i was in my early 20's.
obviously the IDEAL situation would be to get the body functioning at 100% again so we wouldn't need things like supplemental hormones, but that's not always a reality... so what is someone in that position supposed to do?
hormones aren't really alive -- they're a chemical. "bioidentical" hormones are chemically identical to those produced in the human body. the term bioidentical is used to differentiate from synthetic hormones which are quite different from what the body produces, and which have been shown to be dangerous -- progestin, for example.
anyway, i would think that on a lyme board people would understand that at times we have to make compromises out of necessity!
as i stated before, i am hoping that treating lyme will address my progesterone deficiency. if it does not, however, i am far more healthy and happy taking the supplemental progesterone than i was without it. there is simply NO comparison in terms of my physical or emotional wellbeing.
my MRI showed an "empty sella" and a somewhat flattened/compressed pituitary gland. this is thought to be a congenital issue -- a structural problem. if i have compromised pituitary function due to a structural abnormality, no amount of detox/therapy is going to fix that. i have a herniation of CSF in the structure that "holds" the pituitary gland. there is a hole in the membrane that's supposed to keep the excess fluid out. there is nothing i can do to keep that CSF out of the sella -- there is nothing i can do to take that pressure off of my pituitary gland.
so, again, what is someone like me supposed to do?
i do HOPE that the empty sella is not the cause of my endocrine problems but if it is, there is a good chance i will never be able to produce adequate hormones on my own.
i hope this sheds a little more light on my situation and why i advocate for open-mindedness when it comes to BHRT.
it's really frustrating when someone says "just heal the body so it can make the hormones on its own again," as if that's something i wouldn't want or haven't tried.
please understand, again, that supplementing with natural hormones can greatly improve health and quality of life.
it's a very complex issue as sparkle pointed out.
-------------------- Symptoms since age 4 IGM positive Western Blot (Bb) PCR positive Spiro Stat (Anaplasma) Suspect babs and bart Posts: 226 | From Currently in Los Angeles, originally from Malvern, PA. | Registered: Feb 2010
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massman
Unregistered
posted
It can be a complex issue, as your case sounds and as sparkie has pointed out.
Reason I have some concerns are some common misconceptions. I have studied hormones + worked as a health pro with hormonal imbalances for years.
Cells in the body are alive ! Not just chemicals, but energy too. Since compounded bioidentical hormones are NOT ALIVE, how can they really be the same ?
There have been specifically mixed herbals around since the late '50s specifically designed to help organs regain the best health they can.
The developer, A. Stuart Wheelwright PhD ND traveled all populated continents studying herbals with native healers. Even though he has been dead for over 20 years he is still ahead of the crowd.
Now there is lots of howling here when I recommend this docs formulas.
I won't go into extensive detail as preconceived notions seem to rule many here.
One 30 year old had periods that were very scattered - 17 days, 56 days, 36 days etc. After 3 months {3 bottles a month) she was, in her words, 30 days, 30 days, 30 days !
And on + on.... Anyway, "I have tried everything" only means everything you have heard of, so it is not really everything.
Some people here claim they have tried Systemic with no benefit. I am not sure if their claims are true. My experience is that about 85% of patients I treated did good to great.
I have listed an actual book to read (GASP ! not the net) that I have gotten bashed for. Oh...well! "New Dimensions in Herbal Healing" by Jack Tips. _______________________________________________ "Whatever you do, be a seeker" - Steve Earle
----------------------------------------------- I get nothing zero nada for recommending the companies + products.
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
re: my MRI showed an "empty sella" and a somewhat flattened/compressed pituitary gland. this is thought to be a congenital issue -- a structural problem. if i have compromised pituitary function due to a structural abnormality, no amount of detox/therapy is going to fix that. i have a herniation of CSF in the structure that "holds" the pituitary gland. there is a hole in the membrane that's supposed to keep the excess fluid out. there is nothing i can do to keep that CSF out of the sella -- there is nothing i can do to take that pressure off of my pituitary gland.
----
Is there anything you can do to heal the structural problem?
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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posted
Dear lajamur, Yes, I myself am leery of what I call "fauxmones". The nausea is likely the worst symptom, along with the excruciating abdominal pain. At least when I was on the Depo-Provera I had more of a life than I have now. Still, the side-effects were too frightening. It would not work forever anyway.
Taking Vicodin would likely knock me on my rear. It does not take much. Mom is the same way. Medications do not usually set well with my system. The Promethazine makes me dopey enough! The migraines have improved somewhat, but these bouts of pain in the ovaries and diarrhea with are debilitating. Today is another rough day.
Estrogen Dominance is horrible. As you said, the fake hormones are linked to Cancer. My mother had a cyst cluster in her breast from being on HRT. Now she is taking the bio-identical kind as well. I was gluten-free for 3.5 years, but I know that was not an issue now. I just want to feel good and be functional.
Adrenal issues could be a contributor, but the gastric issues are the worst ones. I honestly feel as if I am giving birth. Maybe I just need an epidural! My cycle is really out of sorts since going off of the Depo-Provera. I may need something stronger like you have.
I rarely seem to have an appetite at all on a lot of days. My cycle used to be every 5 weeks and one day exactly. I suffered for a week, but not quite to this extent. Life is dominated by this misery, and going out of the house is impossible. Everything is a Herculean effort.
Dear ticksickfamily, OMG! I do have a couple of nails with white spots on them. Thank you for the link. I am going to check this out. It would be interesting to see if this is the cause of the teeth going bad. The whole scenario has been quite baffling.
I get sick from tap water, so I only drink purified. Over the past several years, I had to only drink filtered water due to the diarrhea and nausea it would induce. I have considered the lack of fluoride in purified water, but have been told it is not necessary for dental health. It is toxic to the Thyroid as well. You would think if fluoride was essential for dental health, the Ancient Greeks certainly would not have had such beautiful and healthy teeth.
Dear sparkle7, Thank you for the link! I have found by research a number of herbs that have phytoestrogens that increase Estrogen Dominance. I read they also block natural progesterone. Pomegranate, sage, lavender, tea tree oil,basil, spearmint,cumin, cloves, turmeric, coffee, and numerous others are mentioned as containing phytoestrogens. I have been wanting to do a liver detox, but am afraid it will make me feel worse.
My body is so fragile right now, I cannot tolerate anything. I feel so awful. Sometimes you wonder why you are still alive. Not having my gallbladder also concerns me about the liver cleanses. Suffering daily is intolerable. I also agree that I would rather be safe than sorry and not be a guinea pig. Most of life has been that way, and I cannot take any more of it.
Your situation with the pituitary gland sounds frustrating. I am not familiar with this condition. Is there a website where I could read more about it? Herniation is very painful and problematic. A condition like this mystifies the medical community. Of course, in my experience, it takes very little to confound most doctors. It is sad, but true.
Dear NanaB, I think the pills may be the way to go. They are more expensive, but what is the use of buying inexpensive cream if it does no good? It is interesting that you mentioned the dyes. I have been allergic to certain dyes my entire life. They put them in everything. I know that the estrogen overload may be to blame for rashes I have had for no apparent reason at all.
Dear massman, I will try to get a hold of that book you mentioned. It sounds interesting. The library may even have it. You never know! I am aware that plants and foods have vibrations they give off when they are "alive". When they have a low vibration, they are not beneficial to your body. Energy is definitely important, and should not be ignored.
massman -- i did NOT say that cells are not alive! they most certainly are. i said that hormones are not alive in the same way that cells are -- they are more of a chemical substance, whereas an individual cell is almost a living organism unto itself.
i am not discounting the issue of energy or "life force." i believe in all of that.
also, i understand that when i say i have tried "everything" i mean that i have tried everything i have come across. obviously it would be impossible for any human being to literally try EVERYTHING. i was speaking colloquially.
sparkle -- the only treatment that is ever suggested for an empty sella is hormone replacement therapy in instances where the pituitary function is compromised. they do not perform surgery on this type of thing unless it is extremely severe (which mine is not). Since it is essentially a "deformity" of sorts there is nothing one can do to cause it to re-grow or re-form properly.
jin -- my experience with the herbs that you have tried has been as you say -- that they are estrogenic and have made my problems worse. i have tried several of the supposedly hormone-balancing herbs in the past and they brought on migraines and made my symptoms worse. i can't eat any soy products for the same reason.
i am so sorry that you are in so much pain. i do understand. please let me know how it goes if you do decide to try oral progesterone... i hope it can help you as much as its helped me!
by the way -- i used to get lots of mysterious rashes too when i was estrogen dominant. it sounds like we have a lot of similar symptoms.
-------------------- Symptoms since age 4 IGM positive Western Blot (Bb) PCR positive Spiro Stat (Anaplasma) Suspect babs and bart Posts: 226 | From Currently in Los Angeles, originally from Malvern, PA. | Registered: Feb 2010
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I haven't read everything here so forgive me if I say something already said.
Bioidentical hormones are not the chemically made hormones that you get from your normal pharmacy. Bioidentical hormones are made out of things from nature. I find that those I get made up in capsule form from my compounding pharmacy work whereas the creams don't. I believe it has to do with the ability for the body to absorb and utilize them better when they're taken internally as opposed to applied in a cream which may not absorb very well.
Suzanne Somers has at least one book explaining bioidentical hormones.
My primary care doc believes in the bioidentical hormones as opposed to the chemical hormone drugs which cause cancer. My ob/gyn doesn't know about bioidenticals and yet will say that they will cause cancer too - and yet - she said that my uterine lining is back to normal. Go figure. I wonder why??? She has made no effort whatsoever to even read about bioidentical hormones to make such a judgment call.
That said, we all have to do our own research and do what we feel is best. I wouldn't tell anyone to do something they don't feel comfortable doing - be it taking a bioidentical hormone, the chemical hormone, herbs, etc or nothing at all.
-------------------- Dx with Lyme & homozygous for MTHFR. Antibiotics & nutritional IV's didn't help. Posts: 57 | From Kansas | Registered: Jun 2010
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massman
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posted
Ahhhhhh........biology ! Chemistry ! Organic Chemistry ! How were your grades in those subjects ?
If....hormones are NOT alive, WHY does the body have to continue to make them monthly ?
Do the ones made previously, like, do something like DIE ? And need to be replaced ? Oh wait - if that is true they would have to actually be alive first ?
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sparkle7
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Anything that works is great! Going through GYN & hormonal stuff is really tough. We just have to be a bit cautious. Just because something is natural doesn't mean that it can't cause toxicity or cancer.
You have to weigh the all of options & make a decision. I did many internet searches about BIHRT. There's not alot of studies about it & whether it is less toxic than the synthetic replacement therapy. This may be why your GYN was noncommittal, NanaB.
I don't seem to be as severe as some of you gals. The pain I have is pretty severe but after all of these years no one has been able to do anything about it except suggest that I get a hysterectomy... I did find that Excedrine was better than a prescription migraine pill.
Everyone has different reactions from drugs, supplements, etc. The opiates really helped me. Sometimes I only need 1/2 or 1/4 of a pill.
We are better off without the fluoridated water in my opinion. We don't need it & it can make people ill. It effects the brain from what I've heard.
posted
massman, what is your definition of the word "alive"?
i don't want to get into a semantical debate. is a hormone an ORGANISM? no, it is not -- not by any conventional scientific standards. a hormone is a chemical -- typically a steroid or peptide. the fact that something is naturally produced doesn't mean that it's alive. can you grow a colony of hormones in a petri dish? no.
it's a chemical substance -- a natural chemical produced by a gland.
are you saying that hormones have a life cycle? that they live and die? again, i think we're getting into semantics here.
i think most people would say that hormones are produced, used, eliminated, or converted. show me some scientific literature backing up your assertion that hormones are "alive" and not a chemical, or that it is possible for a hormone to "die," and i'll be happy to investigate it myself and get back to you. until then, i'd say we should agree to disagree.
sparkle -- on the fluoridated water thing, i couldn't agree more. that stuff is horrible for our brains and our reproductive organs!
-------------------- Symptoms since age 4 IGM positive Western Blot (Bb) PCR positive Spiro Stat (Anaplasma) Suspect babs and bart Posts: 226 | From Currently in Los Angeles, originally from Malvern, PA. | Registered: Feb 2010
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massman
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"are you saying that hormones have a life cycle? that they live and die?"
Why then do organs produce MORE ?
Are those organs just having a slow boring day so they goof a bit + make more ?
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posted
your logic isn't working for me. just because the body produces a certain substance on an ongoing basis, that means that said substance is "alive"??
again, semantics. again, show me the science.
i said it above but i'll say it again -- the body makes hormones on an ongoing basis because it is constantly using, converting, and/or eliminating the ones that are already floating around. sometimes the body NEEDS MORE because the ones it already had have been eliminated through the liver or are already in use, or they've been converted into a different kind of hormone.
if plastics can act as estrogens, does that mean plastic is alive???
now show me something concrete to back up your claims! i'm not going to keep debating this until you can bring some hard science to the table.
-------------------- Symptoms since age 4 IGM positive Western Blot (Bb) PCR positive Spiro Stat (Anaplasma) Suspect babs and bart Posts: 226 | From Currently in Los Angeles, originally from Malvern, PA. | Registered: Feb 2010
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massman
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Science ?
At this point, most "hard science" are studies greatly manipulated by big pharmaceutical companies. They are doing that to line their own pockets, mostly.
Honestly, what is your education and training and work experience in this field that may help form your outlook ?
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posted
i am aware of big pharma's influence, but if it weren't for real HONEST science we wouldn't know half of what we know about lyme, detoxification, inflammation, immune response, and the many other issues which are so immediately relevant to most of us here.
you seem so sure of yourself -- where are YOU getting your information? that's all i'm asking. give me some references. why haven't you answered any of the questions i've asked you?
show me something concrete. so far, all you've done is claim over and over again that hormones are alive. sorry, but i need something more substantial than that coming from an anonymous person on the internet.
-------------------- Symptoms since age 4 IGM positive Western Blot (Bb) PCR positive Spiro Stat (Anaplasma) Suspect babs and bart Posts: 226 | From Currently in Los Angeles, originally from Malvern, PA. | Registered: Feb 2010
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massman
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I have posted here before where and when I went to Massage School + Chiro College. Since we are not supposed to print our names and docs names so that is a double whammy for me. I don't care if you figure out who I really am. A few here do know.
Lots of required continuing ed with: Drs U (big fan + studied a lot with famous Dr K), Dr D, Dr L (lots of hormonal stuff), Dr B, Dr W, Dr R, Dr Bone from Australia, Another doc from Australia - currently blanking on her name, Dr N, Dr. D from OH, Dr T (top ND) and more. Lots of Big Dogs in the natural health field.
BigPharma has Big Money to fund their so called studies. Alt med does not. Many of the studies from Drug companies are on their own products.
Who do you work for + what exactly do YOU do ? Your turn. I am eagerly waiting.
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i actually wasn't asking for your credentials/background. i was and am asking you to provide some information to back up your claims/theories. not a very complex request.
if you want to send me a link to an article, scientific paper, or website that explains in more detail what you're talking about, i'd be happy to look at it.
i'm not interested in getting into a credentials-and-qualifications bragging match. that's not what i'm here for. i'm here for support and information-sharing. your background doesn't matter to me.
feel free to PM me with that info if you can provide it, otherwise i don't think we're really getting anywhere with this conversation.
best, LJ
-------------------- Symptoms since age 4 IGM positive Western Blot (Bb) PCR positive Spiro Stat (Anaplasma) Suspect babs and bart Posts: 226 | From Currently in Los Angeles, originally from Malvern, PA. | Registered: Feb 2010
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massman
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Where is your strong opinion from ?
Studying ?
Treating hundreds of patients ?
Where are your studies ?
(Edited. Please try to not make accusational assumptions about other members. Thanks, sunnydays)
sparkle7
Frequent Contributor (5K+ posts)
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posted
This is going nowhere... I get you lajamur.
There's a serious disconnect. This happens quite often. Not sure why?
Lots of grandstanding with no substance.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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lymielauren28
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Massman, I've been following this thread from beginning to end and I have to say you're really coming across as an egotistical pig. I'm going to say this as eloquently as possible...Do you have breasts? No? A vagina? No? Didn't think so. Are you getting my point? Good.
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
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massman
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laj is allowed to ask questions and I am not ?
I ask where her opinions are from. That is bad ?
I told her who I studied with because that is where some of my knowledge came from.
And 28, I would understand it better if I was female. But I am not. My experience is from treating females who were getting ignored and frustrated from their MDs choosing to be ignorant and uneducated.
And from females choosing to believe that common knowledge is the only way to go.
I realize - and this is a fact, not an ego - that many people fear new ideas and basically push back against them. Pretty obvious here.
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First determine where the imbalance is and what else may contribute to it. About 80% of the time the imbalance originates above the ovaries. (ref. notes from a seminar with Dr. U, a major student of Dr. K)
Using detailed history, detailed symptom survey form and sclerology we are looking for organ stress.
There is essentially a "chain of command" in hormone producing organs and this must be factored in too.
Contributing factors can be many things, like fake hormone like substances (xenohormones) from many commercial products, low fat diets, poor fat diets - real fats, including saturated fats from meat - are needed, unresolved emotional stress and more.
After these and more things like diet and proper digestion are considered then recommendations can be made.
If organs are healthy things should run well. If they are not healthy you will probably need to take something forever. What I recommend are specifically blended herbals designed to help specific organs heal the best they can. No long complicated programs with 3 billion supplements forever.
Did I cover all the bases ? If not let me know.
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sparkle7
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emla999- this herb (Pureraria mirifica root) contains PhytoEstrogen. Some people are estrogen dominant - so, they wouldn't want to take more estrogen.
I agree balancing the organs like the liver & other hormone producing glands can help. It' just that many of us have been there & done that & it's still problematic.
If someone has a physical defect that is causing a problem - it's kind of difficult to correct that with herbs. I don't know if it's a lack of empathy from only male doctors because I've been to female doctors who have been just as bad. Such as suggesting a hysterectomy for menstrual cramps, or telling me that they couldn't offer me any treatment for vulvodynia, etc.
Sometimes, we have to take "something" so we don't go crazy & can function. Our society favors being "productive". When we have to lay in bed for days every month due to severe pain - it makes life very difficult.
Hormonal issues can really cause havoc in our lives & relationships. Every day I hear ads for Viagra. I seldom hear about anything that can help the many issues women face in dealing with "female complaints". Historically, we were given hysterectomies, shock treatment, lobotomies, tampered with by male gynecologists, experimented on, put in mental institutions, given tranquilizers, etc.
Massman - you way of expressing yourself seems condescending. Maybe if you tried a more empathetic approach - you could be more helpful.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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Massman...You did cover all the bases I guess. And I understand problems stemming from above the ovaries, like with other endrocrine glands.
That's easier said than done to find a dr to figure that out. You couldn't even guess how many years I've been trying to find one to do that.
My LD wants to send me on a 4 1/2 hr journey to see an endo in Conn. We are trying to avoid that, since the trip is so hard for me.
I have had a bunch of saliva tests done, and after I fill out a 17 page questionairre, I'm seeing a pharmacist at a compounding pharmacy (only 2 hrs away)!
I must add though, when I started the bios, they helped me more than anything else had.
Right now, actually, we are trying to deal with the insomnia. Very high levels of cortisol waking me up at 1 or 2 in the am, and not being able to go back to sleep.
It's kind of hard for alot of ppl with Lyme (me), to sometimes understand what you are saying, but thanks.
Posts: 847 | From upstateNY | Registered: Dec 2007
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massman
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I knew some practitioners near Albany that I may be able to find for you. (LOL as "upstate NY" is ANYTHING north of NYC).
posted
Albany is about 1 1/2 hrs east of me, so not that far away. I do have to follow up with what my LD has me doing right now, but I truely appreciate that offer.
If you wanted to explain more in a pm as to what kind of docs they are etc, and what you think they couold do for me, that would be great. If not, that's ok too. Thanks again.
Posts: 847 | From upstateNY | Registered: Dec 2007
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massman, i removed myself from this conversation because your tone and attitude were very obnoxious, combative, and upsetting to me.
i have NO PROBLEM with new information.
i DO have a problem with your attitude and way of communicating.
my opinion comes from my OWN EXPERIENCE, my OWN EDUCATION, and most importantly MY OWN BODY. it seems you deem my own personal journey invalid.
what right have you to do that? you are not my doctor, my fiance, my family -- you are a stranger on the internet.
you act like you are coming here to help, but it really seems like you are more interested in being RIGHT than in helping or connecting. a very ugly quality, honestly.
how dare you insinuate that i am a big pharma rep, when i am here promoting the use of bioidenticals, AND talking about the dangers of synthetics?
that is just a blatant insult designed to upset and inflame.
i hope you're proud of yourself.
-------------------- Symptoms since age 4 IGM positive Western Blot (Bb) PCR positive Spiro Stat (Anaplasma) Suspect babs and bart Posts: 226 | From Currently in Los Angeles, originally from Malvern, PA. | Registered: Feb 2010
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massman
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lajamur thanks for answering.
Most of my questions.
Check out the new thread on "scientific" studies.
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massman, i already read it when it arrived in my email this morning along with the rest of dr. mercola's newsletter.
i have been following mercola for almost ten years, as has my entire family.
i'm well aware of big pharma and its corruption, as i stated before.
i'm not as ignorant as you've assumed.
-------------------- Symptoms since age 4 IGM positive Western Blot (Bb) PCR positive Spiro Stat (Anaplasma) Suspect babs and bart Posts: 226 | From Currently in Los Angeles, originally from Malvern, PA. | Registered: Feb 2010
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sparkle7
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The thing about "scientific studies" is that it doesn't really relate to the hormone dysfunction issue. I'm not a scientist & I don't have a science background but from what I could see is that hormones are chemical messengers. They don't seem to have a life of their own. Maybe you could stretch it & say everything is imbued with life from the great spirit/creator, etc.
The scientific study issue is more related to drug trials. We're not really discussing drugs here. Mainly, BIHRT which doesn't have alot of studies about it. I looked... This is why I'm a little concerned with long term effects of BIHRT.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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"The thing about "scientific studies" is that it doesn't really relate to the hormone dysfunction issue. I'm not a scientist & I don't have a science background but from what I could see is that hormones are chemical messengers. They don't seem to have a life of their own. Maybe you could stretch it & say everything is imbued with life from the great spirit/creator, etc."
sparkle, yes, my point exactly! i don't discount "life force" or energy, but hormones themselves are chemicals, not organisms. certainly a CELL is alive, but a hormone... not so much.
massman, since you brought up mercola, i'll add that he does advocate the use of bioidentical hormones in some instances. all you have to do is search his site for "bioidentical" or "progesterone" and you'll find some very even-handed discussions/articles.
"I still strongly endorse progesterone, however I think the cream version has potential complications particularly by the way it accumulates and contributes to disruptions in the adrenal hormones such as DHEA, cortisol, and testosterone. I have learned that although progesterone cream is an enormously useful tool, it needs to be used very cautiously. So, if one is going to use the cream they absolutely need to be monitored with a saliva test on an annual basis. The saliva value should be below 300. I have seen numbers over 10,000 and it may take up to two years for this level to normalize as the progesterone is stored in the fat and comes out very slowly. One should not resume progesterone (in any form) until the level drops below 300 again."
-------------------- Symptoms since age 4 IGM positive Western Blot (Bb) PCR positive Spiro Stat (Anaplasma) Suspect babs and bart Posts: 226 | From Currently in Los Angeles, originally from Malvern, PA. | Registered: Feb 2010
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sparkle7
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posted
I guess the thing here is how does this relate to Lyme treatment? How does Lyme & co-infections exacerbate hormonal issue for women...?
When I thought I had Fibromyalgia - this hormone/endocrine issue was a big concern, as well. I always read - Lyme, etc. effects the hormones - but do we know exactly how it effects them?
It seems that some people get arthritis like symptoms, some get neurological symptoms, some get digestive issues, psych issues... but the hormonal situation is sort of given "a back seat" so to speak. It's actually quite devastating for many women...
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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totally agree that the hormonal aspect of lyme is put on the back burner.
i never even knew i had lyme because my problems, according to most doctors (even my former BHRT endocrine specialist!) were "just hormonal."
i'm guessing that the stress the chronic infection puts on the body somehow can contribute to hormonal/adrenal "collapse"... though that still doesn't really answer any questions.
do the spirochetes attack the glands that produce the hormones the same way they attack collagen-rich tissue, the eyes, etc? is it a by-product of the disease process, perhaps something to do with all the neurotoxins the bugs produce? maybe for someone like me with an already compromised/weakened pituitary gland, the long-term infection was simply enough to cause a complete shut-down.
i feel quite certain that STRESS in its many forms has a lot to do with all of this... and what could be more stressful to the body than a completely dysregulated immune system and chronic inflammation, compounded by dietary and environmental toxins?
i feel that in my case the supplemental progesterone has allowed other things in my body to normalize. i think adding the progesterone back in has actually allowed my adrenals to begin to heal, slowly but surely. it has given me back my sleep, my sanity, my happiness, and my TRUE personality.
i would LOVE to see more concrete, well-thought-out info pertaining to the lyme-hormone connection.
why do so many women experience LYME flares during PMS? my LLMD has said that the lyme sort of syncs up with the female hormonal cycle....
are certain hormonal "climates" more hospitable to lyme than others?
could it be that by adding progesterone back into my body i actually created an environment that was less habitable for the spirochetes? could that explain why so many of my LYME symptoms have improved greatly with BHRT?
-------------------- Symptoms since age 4 IGM positive Western Blot (Bb) PCR positive Spiro Stat (Anaplasma) Suspect babs and bart Posts: 226 | From Currently in Los Angeles, originally from Malvern, PA. | Registered: Feb 2010
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massman
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Have been well aware of the creams + their poor points for some years. When applied they are often stored in the subcutaneous fat.
There is no steady release so it is released in bursts and yes, tests are messed up + impossible to interpret well.
Good point on the lyme + periods possibly synchronizing - thanks.
sparkle said "the hormonal situation is sort of given "a back seat" so to speak. It's actually quite devastating for many women...".
That is the main reason I began to treat hormonal problems because some of my patients were told it was "all in their head". And IME many males, including docs, in OH thought + acted like females are the inferior side of our species.
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