Topic: How do u know difference from hormones and Lyme symptoms?
lyme in Putnam
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Did I ask ask this already? Started progesterone cream last week for low progesterone levels and Lyme symptoms. Does anyone know how to tell what's what? How long till cream kicks in. Sorry if I asked. Thanks.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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TF
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When I had lyme, I went to many gyns, lyme doctor, and an endocrinologist regarding this issue. It was a very big issue for me since lyme gave me a false menopause. All of my hormone levels were very, very low at that time.
The wisdom I got is this: Get your hormones into the normal range. That should take 2 weeks, a month maximum. It is NOT difficult.
Then, if you still have symptoms, they are not from hormone problems.
I eventually got myself to a top notch gyn. He switched me to the best hormones. I also learned from him that some prescription hormones cannot be tested through blood tests, so you don't know what level is in your blood!! So, he took me off of some I was taking for that reason. Crazy.
To find a top gyn, ask a top notch doctor's office what gyn they recommend. Go to the one the doctor's wife goes to. That's what I did and I finally got relief.
Once I got rid of lyme, I needed less and less hormones and eventually was able to stop them altogether. All of my hormone levels went to normal when I was cured of lyme and coinfections.
So, as you get rid of the lyme, you may have to continue to adjust your hormones.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Ellen101
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Actually it can be tough to tell the difference and may take alot longer than 2 wks to a month to get regulated. For some it may be difficult. Alot depends on you. Are you in menopause, approaching menopause , had a hysterectomy, previously on bcp's etc It's a balance that can take time. Finding what works for you is key but may be a bumpy road at first. http://www.womensinternational.com/all_about_balance.Posts: 1748 | From United States | Registered: Dec 2011
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posted
It took me a lot longer to get regulated. Even after being on the hormones for a couple of years, I find I still have to tweak them frequently.
-------------------- Faithful
Just sharing my experience, I am not a doctor. Posts: 2682 | From Colorado | Registered: Oct 2009
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lyme in Putnam
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Last period was November, my head is crazy. Just started progesterone last Thursday. I'm on bicillin shots and antibiotics. I'm so wrong. My hormone doc is new but she knows what she's doing. I thought progesterone cream would help not make me feel worse if thsts possible.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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lyme in Putnam
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Have to see psych this week, can't take this at once. .
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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map1131
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One of my close Lyme friends reacts horribly to many many things that a LLMD tried to do for her.
Even though her body needed hormones...the horrid reactions to all of them, made it impossible for her to do.
Now she's officially entered the menopause stage and I don't know what she'll do.
Her LLMD basically told her just a few months ago...there's nothing more I can do to help you. She's not hanging up the towel yet. She's made an appt with another LLMD real close to home.
My prayer is that this new LLMD will have something to help my friend.
I only have 2 menopause sx that I know are effecting my health. Both sex related. But I've got to wonder if some thing hormonal related would be helpful to me now.
Back in '03 on all the hormones rxed by my then LLMD, I was so ill it didn't matter what he tried with me. My hormone levels test were next to nothing in every hormone. Now that my ovaries have shrunk up and quit, my body has to be needing something?
Lyme in Putnam, I hope you find some answers and help soon. I know you've really struggled of late.
TF, are you anywhere near menopause years?
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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TF
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Pam, when lyme attacked me gynecologically and gave me the false menopause, I was 47 years old. All gyns I saw said my ovaries were "small, very small, which is consistent with menopause" and that I was in menopause. My hormone tests backed it up. It was the menopause from hell !!!!!
So, after some years of this hell and seeing many gyns who could not get me to feel normal, I went to a top endocrinologist.
I asked him, "Is my current condition from menopause or is it from something else?"
He said, "This is not menopause. It is not hard to regulate hormones. You either have fibromyalgia or lyme disease."
Then, he tested me for lyme and the rest is history.
Once I got good lyme treatment (but not during my 2 years of lousy lyme treatment) my shrunken ovaries came back to life and started producing estrogen again. My other body parts came back to life also and began working normally again. I could see many signs that my false menopause was reversing.
As I became gynecologically normal again, I tapered off of my hormone replacement. I was totally fine and did not need it anymore. (I had been on hormone replacement for 5 years!)
A few years after being cured of lyme disease, I went through a normal menopause. It was nothing compared to what lyme did to me.
So, just to let you know that for 5 years I was in a gynecological hell from lyme. It was physical hell and mental hell. The solution was Burrascano style lyme treatment. It started working right away. Within a few months, everything the lyme did to me when it attacked me gynecologically began to reverse. It took a few months for everything to be totally reversed and me to be normal again in my gynecological system.
Since then, I have met a few other women who stopped having periods and were told they were in menopause. It turns out that they had lyme disease. With good treatment, their periods returned.
One woman was 37 years old when she was told she was in menopause. This is very dangerous for the bones because such an early loss of estrogen will lead to an early case of osteoporosis. She started getting her periods back when she went to a Burrascano style doctor.
Pam, I feel for you. Write to me privately if you want any more info. I will help you all I can.
Posts: 9931 | From Maryland | Registered: Dec 2007
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nefferdun
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Menopause can begin years before you actually have your last period. I did not have lyme and suffered tremendously with constant migraines, insomnia and pain in my legs. Once I got on bio-identical hormones, I felt much better in about a month but there were still ups and downs.
You might want to take pregnenalone, which is the master hormone the body uses to produce other hormones. Here is a good explanation of it's benefits.
If you are having trouble sleeping try taking Cortisol Manager at night along with lavender oil capsules. Menopause as well as lyme causes insomnia and being sleep deprived makes you feel pretty wacky.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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beths
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This is a great question. I wish I knew the answer. I was feeling better from treatment-only to start menopause. It's not from lyme-I'm in my early 50's so it's around the time for menopause to start.
My LLMD said after battling lyme for years, my body is tired and depleted-so menopause may be harder on my body.
I'm trying to find a good biological dr to help with all this-I hate to keep taking co-artem if the hot flashes are....hot flashes!!!
Posts: 1276 | From maryland | Registered: Jan 2009
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Ellen101
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Progesterone cream is not for everyone. It made me feel horrible. The creams can be hard to regulate.
Also it is definitely possible you could be experiencing side effects from the antibiotics you are on. Zithromax has been known to cause anxiety and depersonalization in some. Perhapsyou should discuss with your LLMD about taking a break to see if your symptoms improve.
Posts: 1748 | From United States | Registered: Dec 2011
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posted
My mother said she went through menopause for 20 years. I told her it was Lyme but...
I didn't have any menopause symptoms. Not one. Of course, I have hundreds of Lyme symptoms so some may have doing double duty and I wouldn't have known it.
Posts: 921 | From CT | Registered: Apr 2009
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Ellen101
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Women can go through "perimenopause" for yrs prior to actually being in menopause. This has nothing to do with lyme, just the normal decrease in estrogen as you age. Some women experience this earlier than others but most in their 40's.
Of course just because it is a natural progression it does not mean you need to go through it without the help of hormonal treatment. I don't think most women experiencing it also have lyme, just that their body is adjusting due to the change in hormone levels naturally decreasing. It is a normal event, but not an easy one to adjust to.
I went through surgical menopause due to a hysterectomy and it was just awful. There was no gradual reduction in hormones. It took me a long time to find balance.
Please don't be discouraged especially when others say it only takes 2 wks to a month as that simply is not the case. In 2 wks your body would not have even gone through a whole cycle. It can take much longer and things will need to be tweaked along the way.
I do feel though you really should investigate with your LLMD to see if your antibiotics are playing a role in how poorly you are feeling.
When I was on rifampin I was miserable. The depression was horrible. I remember sitting at my son's concert and when the lights dimmed for the performance the tears started flowing. I cried the whole way home. My family could not figure out what was wrong with me.
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dbpei
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I had a late menopause (age 54) and it is likely I had lyme then. It was not too difficult, but many of the symptoms of menopause overlap with lyme. I had insomnia, hot flashes and mood swings, but not out of the ordinary or severe.
I definitely notice a change in my sexual response now that is very concerning to me. I don't know whether this is from lyme or menopause. I am 59 now. From what I have read, menopause should not do this.
I am taking vagi-fem (estradiol vaginally 2 x week)to decrease pain during intercourse. My GYN says it is such a small dose of estrogen that gets into your blood stream that it is very safe for me to take. I hope he is right. I have now been on this for 2 years.
Wondering when things will change. Perhaps when other symptoms start to improve, I will notice a change in this department as well. I sure hope so.
Posts: 2386 | From New England | Registered: Aug 2011
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I am on the combipatch since I am missing all hormones, sex or otherwise, and my boobs hurt 2 weeks out of the month. I was "told" i was in menopause, but my hormone levels are less than 0 and menopause doesn't leave you with 0 hormone levels. I can't explain this to any of my docs, but I have no sexual response to anything. I have complained loudly, but to no effect. The last 2 residents I went to said that the combipatch works and if I am having other problems, that maybe something else is going on (mental.) This is crap. Everyone is so different that taking a standard dose may not work for many people. I do know that you may need to test all hormone levels and repeat the test frequently to make sure that any remaining hormones are normal. Lyme is such a big endocrine disrupt-er.
Posts: 482 | From Oregon | Registered: Feb 2011
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TF
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The combipatch did not work for me at all. My doctor's conclusion was that I was not able to absorb the hormones in the form of the patch. He is a top gyn and has really studied these things.
My blood test results showed lots of hormone in my blood, but I felt like I was getting no hormone. So, that was the end of the patch for me. I went on pills.
Also, regarding using creams, I agree that creams are hard to regulate. I had a doctor (who I now consider a quack) give me a testosterone cream to use. I followed his directions for use.
I eventually went to Johns Hopkins looking for a diagnosis of what was wrong with me. The endocrinologist there tested my blood and my testosterone was as high as a man's!!
He was so upset and worried for me. I saw the test results and it worried me also. I stopped that testosterone cream that very day.
So, please get yourself to a top notch gyn who knows how to do hormone replacement therapy. You don't want to endanger yourself or make yourself sicker than you already are.
When I had lyme and had the false menopause, I had no sexual response to anything. It was as if a switch was turned off. Sex didn't even make sense to me mentally when I was in that state. I knew it was weird, but I couldn't change it.
When I eventually got good lyme treatment, all returned to normal.
Also, once I went through real menopause without lyme disease, my hormone levels were actually zero. My brain couldn't handle it. I had to go on hormone replacement therapy.
People with lots of body fat often never go to zero hormones after menopause as estrogen is in fat cells. But, if you don't have a lot of fat cells, you can end up with zero estrogen after menopause.
There is nothing standard about hormone replacement when a person has lyme disease. That is for sure. You need a real expert to help you when you have lyme.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Ellen101
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quote:Originally posted by dbpei: I had a late menopause (age 54) and it is likely I had lyme then. It was not too difficult, but many of the symptoms of menopause overlap with lyme. I had insomnia, hot flashes and mood swings, but not out of the ordinary or severe.
I definitely notice a change in my sexual response now that is very concerning to me. I don't know whether this is from lyme or menopause. I am 59 now. From what I have read, menopause should not do this.
I am taking vagi-fem (estradiol vaginally 2 x week)to decrease pain during intercourse. My GYN says it is such a small dose of estrogen that gets into your blood stream that it is very safe for me to take. I hope he is right. I have now been on this for 2 years.
Wondering when things will change. Perhaps when other symptoms start to improve, I will notice a change in this department as well. I sure hope so.
Vagifem is not enough for alot of women. You may want to ask about trying estring http://www.pfizerpro.com/hcp/estring or estrace cream. They work much better and may be what you need to "restore" the area and then may be able to switch to something like vagifem for maintenance. Vaginal atrophy is an unfortunate side effect of menopause but a fixable one.
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dbpei
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Thank you Ellen. I like the Vagifem because of its limited systemic absorption of the estrogen. It works where it is supposed to, but doesn't put me at as much of a risk for things like cancer, deep vein thrombosis or dementia.
It is not so much the vaginal atrophy that concerns me but the lack of desire or response. Even during the first couple of years past my last period, I still enjoyed relations with my husband. It seems that when I started treatment for lyme, everything changed.
Hoping that this will reverse itself in time with the right treatment as my other symptoms improve. It is helpful to hear of others with similar symptoms - especially to hear of the improvement over time.
Posts: 2386 | From New England | Registered: Aug 2011
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lyme in Putnam
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My Lyme and Bart were dormant in ondamed. Could it just have whacked everything out? I'm on progesterone cream , almost 2 weeks. Thought I'd start to feel better by now, not worse. Have to see her tomorrow.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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Ellen101
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dbpei
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Thank you Ellen... That article was helpful. I wish I could explain better but this is more than "my mood" affecting things. It is something more physiological than psychological.
I know the difference, having had other stressful periods in my life prior to having a chronic illness like lyme. This illness has shut down something that used to work just fine - even post menopause.
Posts: 2386 | From New England | Registered: Aug 2011
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map1131
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TF, thanks but it is a lyme friend of mine that is struggling so much. My 2 bothersome sx are not top priority on my list.
I will make sure my friend reads this thread. She might find some things of interest and she might need to contact you for some advice.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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I started periomenopause when I was 39, and was on hormone pills and patches for 10 years.
I then got very dense breasts and later was diagnosed with DCIS breast cancer, and abruptly stopped them. At about that same time, I went through official menopause.
After finally getting diagnosed with Lyme, my LLMD wanted me to go on bio-identical hormones, and I asked him about breast cancer. He told me that bio-identical creams are a balance of the four hormones that are compounded according to his specifications, and actually will help protect me against more breast cancer, as opposed to the type I was taking before.
Since using the bio-identicals, what I thought were Babs flashes were gone, along with some of the air hunger. I hadn't realized how grumpy I had been feeling, and my moods lifted and leveled out. I'm sleeping better, and feeling more rested.
For a nil sex drive, testosterone needs to be in the mix, and it's in mine, but that's not a big priority for me right now.
I feel so much better, I think they have done more for me than almost any other treatment at this point.
Posts: 123 | From Pawleys Island SC | Registered: Mar 2013
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Catgirl
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Loving this thread.
I tried compounded progesterone cream but I quit it too soon. It is in my nature to stop something when it makes me feel bad, which this cream did (felt much worse). Unfortunately, my ob didn't tell me to ride it out for a month because it levels out (she told me this afterwards).
For anyone who has taken bioidenticals, is there a reason why women are supposed to stay on them a certain number of days, then take a break? I wonder how they determined this? I've been muscle testing progesterone cream, and it is not coming up for me everyday.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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posted
As far as I know, if you are in menopause, you don't take a break from the bio identical creams.
-------------------- Faithful
Just sharing my experience, I am not a doctor. Posts: 2682 | From Colorado | Registered: Oct 2009
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CD57
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Follks....I thought that creams were a no-no because of what TF's doctor said above....(I had the same issue) and that pills were also a no-no due to its having to go through GI tract and liver?
I thought the latest was sublingual drops. Would seem to bypass both issues, or most of them, that the creams and pills pose?
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randibear
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Im 64 and my llmd and gyno said I dont need hormones but my sister is 67 and her doc put her back on them. Premarin I think.
We're all different I guess.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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Catgirl
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Thanks CD57. I went back and read TF's post on creams. That might explain why it's not testing positive for me everyday (one dose could be strong enough to last).
Very cool about the sublingual drops! I will ask about them.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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lyme in Putnam
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I was told to do the progesterone 21 days then stop for a week. Supposed to start estriol (I think) when it comes in tomorrow. That's everyday. Feel worse anxiety dp since I started them. I hope there's a turn soon.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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I lost my pituitary function due to Lyme disease, this includes the sex hormones. I use the Combipatch which is both estrogen and progesterone. Keep your eye on related pituitary hormones, cortisol-a big one that is life threatening if it goes to zero, growth hormone which you need for maintenance and vasopressin. Also, your thyroid won’t work. When I lost cortisol, I lost my sodium levels since cortisol is responsible for those levels and when sodium gets too low, nausea and vomiting kick in.
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