Re: Newbie here..Need advice,am losing my mind and body.

[Guest guest]

You are horribly OD'd on progesterone. I never used WP because I had a

sense that those huge amounts of progesterone were not good. I hope those

who have done WP will chime in. How old are you? Are you post-meno?

Val

-----Original Message-----

From: rhythmicliving [mailto:rhythmicliving ]

On Behalf Of blessed2bmom

I am working with a WP doc for the last 11 months. I.Am. A. Mess. AND SICK

OF IT!

I have a long,ugly story to tell, but I cannot think straight at the moment.

Yesterday was

day 28 of the LAST time I will take the WP. I have NO idea how I found this

group-but I did,

and another general site for hysterectomies-and haven't taken ANY hormone

since

yesterday AM.

Yes, I am telling my doc. though I can't imagine she will be surprised-and

she will blame

my failure, on not getting me silver fillings out-and detoxing!

Brief history...

I am 3.5 yrs. post-complete hysterectomy/oophorectomy,after losing a 20+ yr

battle with

stage 4 endometriosis. Before my hysterectomy, I was also dxed with

Fibromyalgia. POST

hysterectomy, I was dxed with Hypothyroid,CFIDS,EBV,and a heart murmer. Long

history of

anxiety,insomnia, and panic disorder. A ball of fun.

11 months ago, after much misery of various BHRT, I saw a doc who seemed to

know her

hormones, and I fell for it.

After many blood draws,one check-up, and two phone consults(she's an hour

away) I was

told there wasn't much she could do for me,until my mercury came out, and

meanwhile,

she has told me to tough it out(or the nurses,actually)-the latest,being

that I had a yeast

infection out of nowhere, and HORRIBLE bladder issues-mainly leaking a lot.

There have

been many changes to the WAY I use the WP-but never an adjustment of dosage.

Though

she has adjusted my Armour thyroid-each time telling me it will effect my

sex hormones-

and to give it another two mos to balance out. Balanced? What's that?

I blame myself for much of this-I thought I was well read-but it is

painfully clear to me

now, that if WP works-it's not meant for women who have had such a horrible

medical

history as mine, and an oophorectomy in my late 30's! BUT!!! SHAME ON THIS

DOCTOR!!!!!!

NOW-

What can I do? I am so depressed-I feel so betrayed by sooooooo many docs,

and have no

trust in them.

I read the list of P ovrerdose, and,yes, I do have many of them-though some

were already

there. However!! I am NOT getting better on this protocol. My words

mumble-jumble,I

have gained tons of weight,and am soooo depressed-with thoughts of suicide

at times. My

brain is scary!!!!!!!! No word recall,no memory,total fog. It has taken me a

loonngg time

just to write this.

There is a new compounding pharmacy in my city,and the pharmacist is very

nice an

informed. Do I turn to him? My husband wants me to see someone first thing

tomorrow. I

am scared.

b.

[Guest guest]

Hi B,

I am sorry to read what you have been through....and yes, I can understand the hesitancy in trusting the medical field after such a track record. I am glad you found this group for help and support, it certainly made a big difference for me to be able to understand that I am not alone.

Brief hx of myself; three yrs ago while undergoing expl. surg for a suspicious mass in my abdomen, the 'dr' I had chose to remove a functioning ovary and leave a non-functioning one in. Within a couple weeks after the surg I began to suffer from extreme fatigue and all over body joint pain.....then the loss of s.t. memory, hairloss, inability to sleep, weight gain, mood alteration set in.....After 11 months of begging for help and being told it was all in my head I went outside of the HMO to some other physicians for help. Was diagnosed with hypOthyroid (hashi's) and then later with a bunch of food allergies which i never had prior to the surgery (i was hypOthyroid for at least a few years prior to surgery though and refused treatment by the hmo 'docs'). I also tested high with the EBV titer, but no 'current' infection reported (per the lab results).

Out of desperation to feel better I went on the WP. What it did for me was decrease my joint pains (initially), but that only lasted for the first two weeks of the protocol. None of my other symptoms improved (in fact it was a pretty bad rollercoaster ride). I too gained a massive amount of weight on it and got the linea negra one gets while pregnant (even though my serum P levels never went higher than 3.3). The Dr I saw at the time had warned me not to go on the WP but I was reaching for some hope to get better and signed the consent to begin. This Dr, after 4.5 months on the WP told me that ethically he would not write another order for it after seeing how bad it was making me feel. I give him great accolades for that because, when you are on it, and it is effecting your brain/mood, it is hard to see things clearly.

I have been off of the WP now for 1.5yrs now and still have not been able to lose the weight I've gained. I still have all the problems I had before and during the WP; however, my body feels much different. It feels as if the high doses in the WP, like the surgery did, changed the entire physiology of my body. I swear that high level of P used in the WP is STILL sitting in my body and messing the entire endocrine/immune system up!

From my readings, and from the many Physicians I saw, drastic changes in hormones can set off numerous changes in the body (especially autoimmune issues) if one is prone to them. Thus the increase in my hashi antibodies, the worsening of the psoriasis after my surgery and the increased allergies to food. More recently, per the Dr I am seeing now (and more reading) the addition (ie WP), or deletion (ie: surg) of hormones can basically 'turn on' the switch in ones body for medical issues that would not have 'come to be' if these severe hormonal changes did not occur.

I wish I had some good news to share with you about something I found that worked for me. I haven't found anything yet. I did start on LDN (low dose naltrexone) which is supposed to help reset the immune system and has some very interesting results. To date (started on 12/04/08) I haven't had much change (maybe a bit improvement in the sleep area); However, a friend of mine has had some excellent results on it. She has been hypOthyroid for years. Taking between 120 to 180mg of Armour per day. She went on the LDN and had to decrease her armour to 30mg/day, and thinks she will have to decrease even further. She reports an increase in her mood, increase in her energy, and increase in her brain functioning (clearer thinking and got back her ability to multitask!).....

I do also feel better when I take the 'Standard Process' body detox system (seems to help decrease the inner racing/anxiety a bit). There was another woman on this board (sorry, but it has been so long since her post i forgot her name). She too had used the WP and gained weight from it (and had, what i believe would be termed, 'inner anxiety'). Anyway, I remember she wrote about going on Iadoral and Cortef. She had reported it helped her to start losing the weight she gained from the WP (you know that weight that will simply not come off no matter what one does to get it off)....

I don't know if she is still a member of RL, but hoping that if that treatment continued to help her, she will respond to give you her insights....

Hang in there B.....you have been through a lot and it sounds as if your body is reeling from the hormonal upheavals it has had throughout these past few years.....

Have you been tested for any other viral, bacterial or fungal infections? That is something I am thinking may also play in to the reactions I am having.

If the LDN ends up working for me, I will certainly let you know.

Kam

**************One site keeps you connected to all your email: AOL Mail, Gmail, and Yahoo Mail. Try it now. (http://www.aol.com/?optin=new-dp&icid=aolcom40vanity&ncid=emlcntaolcom00000025)

[Guest guest]

Hi Rainbow....

Yes, I truly believe the surgery changed my body chemistry (prior to it I was

able to take any type of BCP and had absolutely no side effects, I took the

same pill I took for 15 years about 10 months after the surgery thinking it

would help with replacing the lost hormones and it caused severe ill effects

with

bloating, mood changes and other issues that I never had previously).

The large amounts of P in the WP mimic pregnancy (at least in me) to the

point I got the linea negra and since then I have had no ability to lose weight

and other new issues that arose.

I wanted to send the below to you.....I am sure that LDN is not for everyone

(just like one size of hormones fits all is not the case).....but there is

promising studies out there in re: to LDN.

" Patients who benefit from LDN treatment include:

Patients with premenstrual symptoms lasting for 4 or more days each cycle

Patients with endometriosis or polycystic ovarian disease (PCOS)

Patients with persistent brown menstrual bleeding

Patients with persistent fatigue or sleep disturbances

Patients with low mood or excessive anxiety

Patients with a personal or family history of autoimmune disease, including

autoimmune infertility. "

The above is from suite 101.com in re: to fertility and autoimmune issues.

It is written by Elaine who (based upon a friend who has followed her and

read her books) is quite knowledgeable in re: to new treatments and

reads/studies up on them. From my understanding Elaine has a book coming out

about LDN

and is going to be using it herself.

Just something you may want to look in to....

Kam<BR><BR><BR>**************<BR>One site keeps you connected to all your

email: AOL Mail, Gmail, and Yahoo Mail. Try it now.

(http://www.aol.com/?optin=new-dp & icid=aolcom40vanity & ncid=emlcntaolcom00000025)\

</HTML>

[Guest guest]

Hi Liz,

Sorry to read that the WP caused gallbladder issues..something that high E has been reportedly related to in women.

I hope your Dr starts to listen to you and your symptoms versus blowing it off. I have watched so many of those medical mystery shows on discovery health about physicians that tell patients their symptoms are all in their head (some suffer up to 30 years being told that) until they meet one physician who cares enough to run more studies and look in to medical journals only to discover that the pt was correct the entire time. Keep on pushing for the answers (maybe telling them if they find the dx they may be featured on the tele will help! :} ...just joking about--somewhat!)...

I will certainly let you know if the LDN ends up working. I started on 2.25mg for a week and am now on 4.5mg.

I wouldn't be able to tell you if it caused anxiety in me because I have had that, what I call, inner racing since post surgery and it worsened after the WP.....but it may have decreased it just a bit so far because my sleep had gotten just a bit better.....

If it helps to lose weight I have not seen that so far, in fact I think I might have gained a couple pounds since starting it....I, unlike you, would love to be able to lose the weight i gained post surg and post WP.....

Do you have abd. bloating and bouts of strong diarrhea (and any finger/hand/arm swelling) along with your gut issues? Kam

**************One site keeps you connected to all your email: AOL Mail, Gmail, and Yahoo Mail. Try it now. (http://www.aol.com/?optin=new-dp&icid=aolcom40vanity&ncid=emlcntaolcom00000025)

[Guest guest]

> From my readings, and from the many Physicians I saw, drastic changes in

> hormones can set off numerous changes in the body (especially autoimmune

issues)

> if one is prone to them. Thus the increase in my hashi antibodies, the

> worsening of the psoriasis after my surgery and the increased allergies to

food.

> More recently, per the Dr I am seeing now (and more reading) the addition (ie

> WP), or deletion (ie: surg) of hormones can basically 'turn on' the switch in

> ones body for medical issues that would not have 'come to be' if these severe

> hormonal changes did not occur.

I don't mean to hijack this thread, but just wanted to comment on

this. After participating in online communities with women who have

PCOS and hypothyroidism for some time, it's astounding how many of

them only started having issues after the hormonal changes of

pregnancy. I definitely believe in these " switches " that severe

hormones changes can turn on and off.

I guess I'm lucky (if you could call it that) to have found my PCOS

and hypothyroidism before having any children, so hopefully once I get

them under control I'll be " ok. " But I'm also so scared that getting

pregnant could do something else horrible and irreversible to my body.

I don't know if I could deal with any more issues!!

Any thoughts?

~Rainbow~

[Guest guest]

"I had some thyroid *Hashi suspicion* and PCO before pregnancy, my symptoms improved dramatically during the pregnancy,"

That is great your symptoms abated and all have not returned!!!

Pregnancy level of hormones do decrease the immune system (to protect the fetus from attack).....I have heard of other women who are quite ill with Hashis (untreated at the time) that had all of their symptoms go away during the pregnancy. However, one woman who spoke about this stated her symptoms returned with a new vengeance a few months after delivery. Kam**************One site keeps you connected to all your email: AOL Mail, Gmail, and Yahoo Mail. Try it now. (http://www.aol.com/?optin=new-dp&icid=aolcom40vanity&ncid=emlcntaolcom00000025)

[Guest guest]

Hi Kam,

I have been toying with the idea of LDN. I wished I had known about it 10 years ago. I would have tried it for the endometrial cancer.

I wanted to also say that I have had gallbladder problems while and since the WP. I NEVER had anything before. Today I'm going to see the gastro dr again. (Went through tons of testing last year only to have them say it's in my head) to see what can be done. I can't take the pain anymore.

Kam, I would love to hear how you do on the LDN. Did you start out at 1.5mg? Any side effects? I was told that it could cause some anxiety and weight lose. I can't get either. I'm already anxious and very skinny

Liz

___________________________________

www.ojaipaintedminis.com

http://fineartamerica.com/artwork/tag/liz+vernand

From: rhythmicliving [mailto:rhythmicliving ] On Behalf Of userkam@...Sent: Monday, December 29, 2008 9:14 AMTo: rhythmicliving Subject: Re: Newbie here..Need advice,am losing my mind and body.

Hi Rainbow....Yes, I truly believe the surgery changed my body chemistry (prior to it I was able to take any type of BCP and had absolutely no side effects, I took the same pill I took for 15 years about 10 months after the surgery thinking it would help with replacing the lost hormones and it caused severe ill effects with bloating, mood changes and other issues that I never had previously).The large amounts of P in the WP mimic pregnancy (at least in me) to the point I got the linea negra and since then I have had no ability to lose weight and other new issues that arose.I wanted to send the below to you.....I am sure that LDN is not for everyone (just like one size of hormones fits all is not the case).....but there is promising studies out there in re: to LDN."Patients who benefit from LDN treatment include:Patients with premenstrual symptoms lasting for 4 or more days each cyclePatients with endometriosis or polycystic ovarian disease (PCOS)Patients with persistent brown menstrual bleedingPatients with persistent fatigue or sleep disturbancesPatients with low mood or excessive anxietyPatients with a personal or family history of autoimmune disease, including autoimmune infertility."The above is from suite 101.com in re: to fertility and autoimmune issues. It is written by Elaine who (based upon a friend who has followed her and read her books) is quite knowledgeable in re: to new treatments and reads/studies up on them. From my understanding Elaine has a book coming out about LDN and is going to be using it herself.Just something you may want to look in to....Kam<BR><BR><BR>**************<BR>One site keeps you connected to all your email: AOL Mail, Gmail, and Yahoo Mail. Try it now. (http://www.aol.com/?optin=new-dp & icid=aolcom40vanity & ncid=emlcntaolcom00000025)</HTML>

[Guest guest]

Hi Rainbow,

I am about 8 month postpartum now. I had some thyroid *Hashi suspicion* and PCO before pregnancy, my symptoms improved dramatically during the pregnancy, and now postpartum i see the return of some symptoms, and improvement of the others. I do still breastfeed full time *breastfeeding alters the hormones*...But overally, i can't say that pregnancy made things much worse...hope that helps.

-J.

Subject: Re: Newbie here..Need advice,am losing my mind and body.To: rhythmicliving Date: Monday, December 29, 2008, 7:07 AM

> From my readings, and from the many Physicians I saw, drastic changes in> hormones can set off numerous changes in the body (especially autoimmune issues)> if one is prone to them. Thus the increase in my hashi antibodies, the> worsening of the psoriasis after my surgery and the increased allergies to food.> More recently, per the Dr I am seeing now (and more reading) the addition (ie> WP), or deletion (ie: surg) of hormones can basically 'turn on' the switch in> ones body for medical issues that would not have 'come to be' if these severe> hormonal changes did not occur.I don't mean to hijack this thread, but just wanted to comment onthis. After participating in online communities with women who havePCOS and hypothyroidism for some time, it's astounding how many ofthem only started having issues after the hormonal changes ofpregnancy. I definitely believe in these

"switches" that severehormones changes can turn on and off.I guess I'm lucky (if you could call it that) to have found my PCOSand hypothyroidism before having any children, so hopefully once I getthem under control I'll be "ok." But I'm also so scared that gettingpregnant could do something else horrible and irreversible to my body.I don't know if I could deal with any more issues!!Any thoughts?~Rainbow~

[Guest guest]

I feel my food sensitivities are much more accute now *in pregnancy i could really eat anything i wanted*...but other than that not much is different.

-J.

Subject: Re: Newbie here..Need advice,am losing my mind and body.To: rhythmicliving Date: Monday, December 29, 2008, 1:54 PM

"I had some thyroid *Hashi suspicion* and PCO before pregnancy, my symptoms improved dramatically during the pregnancy,"

That is great your symptoms abated and all have not returned!!!

Pregnancy level of hormones do decrease the immune system (to protect the fetus from attack)..... I have heard of other women who are quite ill with Hashis (untreated at the time) that had all of their symptoms go away during the pregnancy. However, one woman who spoke about this stated her symptoms returned with a new vengeance a few months after delivery. Kam************ **One site keeps you connected to all your email: AOL Mail, Gmail, and Yahoo Mail. Try it now. (http://www. aol.com/? optin=new- dp & icid=aolcom40vanity & ncid=emlcntaolcom000000 25)

[Guest guest]

Hi B

I am saddened to read your story but have some info I hope will help you.

If you have been correctly diagnosed with fms/cfs than that is THE primary issue

with

what is wrong. I have fms and after four years of not being treated correctly, I

was

fortuitously given a copy of Dr St Amand's book " What Your Doctor May Not Tell

You

About Fibromyalgia " . What an eye opener it was for me to read that book.

http://www.fibromyalgiatreatment.com/index.htm

People with fms/cfs suffer from a myriad of symptoms --- pain, fatigue,

insomnia, IBS,

anxiety, depression, frequent urinary tract infections, ear, nose and throat

problems,

genitourinary problems, hot flashes/night sweats, and on and on, literally

problems from

head to foot. One third of fibromyalgics are also hypoglycemic and need to go on

St

Amand's hg diet as well. If one is both fms/cfs and hg the anxiety and

depression can be

even more severe.

I am a patient of Dr St Amand and this is what I know. No bhrt protocol will

reverse

fms/cfs. Dr St Amand feels that fms and cfs are one and the same illness and he

successfully treats them in the same manner. What I learned from his book and

being his

patient is those of us with fms/cfs have a genetic kidney defect causing

phosphates to

build up in ones body over years and years creating havoc. Dr St Amand has found

that

using his guaifenesin protocol will push the excess accumulated phosphate out of

the

body and over time we reverse all of our fms symptoms. The pain, fatigue, IBS,

insomnia,

etc etc goes away. He has treated over 10,000 (yes, ten thousand) patients

successfully

and my New Year's wish is for you to be one of them.

You can order his book from his web site:

www.http://www.fibromyalgiatreatment.com/books & vids.htm

If at all possible I highly recommend your becoming his patient. He's in the

Marina del Rey

area of Los Angeles. Since you had a hysterectomy at such an early age you will

need bhrt

in addition to the guai protocol. I went through normal meno, but have been on

bhrt for a

long time.

I would be happy to talk further with you about any or all of this and feel free

to write me

direct if you prefer.

Kind regards,

Janet

>

> I am working with a WP doc for the last 11 months. I.Am. A. Mess. AND SICK OF

IT!

>

> I have a long,ugly story to tell, but I cannot think straight at the moment.

Yesterday was

> day 28 of the LAST time I will take the WP. I have NO idea how I found this

group-but I

did,

> and another general site for hysterectomies-and haven't taken ANY hormone

since

> yesterday AM.

>

> Yes, I am telling my doc. though I can't imagine she will be surprised-and she

will

blame

> my failure, on not getting me silver fillings out-and detoxing!

>

> Brief history...

>

> I am 3.5 yrs. post-complete hysterectomy/oophorectomy,after losing a 20+ yr

battle

with

> stage 4 endometriosis. Before my hysterectomy, I was also dxed with

Fibromyalgia.

POST

> hysterectomy, I was dxed with Hypothyroid,CFIDS,EBV,and a heart murmer. Long

history

of

> anxiety,insomnia, and panic disorder. A ball of fun.

>

> 11 months ago, after much misery of various BHRT, I saw a doc who seemed to

know

her

> hormones, and I fell for it.

>

> After many blood draws,one check-up, and two phone consults(she's an hour

away) I

was

> told there wasn't much she could do for me,until my mercury came out, and

meanwhile,

> she has told me to tough it out(or the nurses,actually)-the latest,being that

I had a

yeast

> infection out of nowhere, and HORRIBLE bladder issues-mainly leaking a lot.

There have

> been many changes to the WAY I use the WP-but never an adjustment of dosage.

Though

> she has adjusted my Armour thyroid-each time telling me it will effect my sex

hormones-

> and to give it another two mos to balance out. Balanced? What's that?

>

> I blame myself for much of this-I thought I was well read-but it is painfully

clear to me

> now, that if WP works-it's not meant for women who have had such a horrible

medical

> history as mine, and an oophorectomy in my late 30's! BUT!!! SHAME ON THIS

DOCTOR!!!!!!

>

>

> NOW-

>

> What can I do? I am so depressed-I feel so betrayed by sooooooo many docs, and

have

no

> trust in them.

>

> I read the list of P ovrerdose, and,yes, I do have many of them-though some

were

already

> there. However!! I am NOT getting better on this protocol. My words

mumble-jumble,I

> have gained tons of weight,and am soooo depressed-with thoughts of suicide at

times.

My

> brain is scary!!!!!!!! No word recall,no memory,total fog. It has taken me a

loonngg time

> just to write this.

>

> There is a new compounding pharmacy in my city,and the pharmacist is very nice

an

> informed. Do I turn to him? My husband wants me to see someone first thing

tomorrow.

I

> am scared.

>

> b.

>