Interstitial cystitis - diagnosis

[Guest guest]

I read on one of the posts that someone had this diagnosis. I have Sjogrens and having pelvic tenderness and wonder how is this diagnosed? And does LDN help with this or make it worst?

[Guest guest]

,Thanks for the information. I started taking the ldn in October and gradually I was feeling better. My pain was not so bad in my upper body and my eyes and dry mouth improved. About two months ago I started having the back pain. I had the MRI on Monday and should get the results today. I did have some blood work and I am happy to report that all my anti-bodies were negative and also negative for the HLA-27 gene for AS. I just started having the pelvic pain and it is kind of scary. Dr. Zagon had advised that I take the ldn every other day which I tried and then ran out and missed it for two days. My eyes got worst and so did my pain. I have been back on the 3mg for three

nights straight but am feeling worst and I am having bad sweats at night and the morning and my mood is not so great very depressed. I happy to report that my platelets increased to 166 from as low as 120 before. Due to ldn? I don't know. I am hoping this is just temporary with the ldn and that I will start to feel better again. I want to have some hope.,...I am discouraged that it is not working. Forever hopeful,From: Lee <nancy_lee.2154@...> Debruycker <debruyckerm@...>Sent: Tue, February 8, 2011 11:22:48 PMSubject: Re: [low dose naltrexone] Interstitial cystitis - diagnosis

Hello I have relapsing polychondritis (RP). As well I have secondary Sjogrens, ie dry mouth and eyes. Well, I am not sure if if is really Sjogrens as my ophthalmologist says, or whether it is just another symptom of my RP. I have punctum plugs for the eye dryness.As well I have had a painful urethra that hurt when I sat down and at other times. Since taking LDN my urethra is not painful, but I do notice it at times, especially when I lie down to sleep, after using the toilet. My eyes are not really comfortable, but my ophthalmologist said that I now had an intact tear film. They do not ache at night now, but I use Refresh drops whenever I wake up during the night as my eyes feel as if they are glued to the underside of my eyelids.

My mouth is not as dry, thank goodness. I no longer have to chew gum to stop coughing as my throat was so dry. I saw a picture of Charlie Sheen's teeth on TV the other night and they are a decayed mess. It was said to be due to the drugs he is taking which cause a dry mouth. I don't wan't my teeth to rot like that. Please let me keep some part of me working as I get old.Before I started to take LDN, I had to go to bed about 8.00pm everynight as my eyes were so sore. Now I can stay awake as long as I like.I have read that Interstitial Cystitis causess pain in more places than the urethra, but not for me. in Aus From: Debruycker <debruyckerm@...>low dose naltrexone Sent: Wed, 9 February, 2011 12:11:24 PMSubject: [low dose naltrexone] Interstitial cystitis - diagnosis

I read on one of the posts that someone had this diagnosis. I have Sjogrens and having pelvic tenderness and wonder how is this diagnosed? And does LDN help with this or make it worst?

[Guest guest]

Find a good hormones,bio-identical hormones.

Adrenal,thyroid and sex hormones.

The

Hormone Solution: Stay Younger Longer with Natural Hormone and Nutrition

Therapies

Ldn is never stand alone theraphy.

If you have liver problems ,look for the protocol of der

berkson

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[Guest guest]

" Re: Interstitial cystitis - diagnosis

Posted by: " zahavi " zahavi100@... z100a2002

Thu Feb 10, 2011 12:44 pm (PST)

Find a good hormones, bio-identical hormones.

Adrenal,thyroid and sex hormones. "

I have to say that those two statements, on their own, contain some VERY

dangerous advice. You should have added something to the effect of " only take

(any of) these products while under regular and constant care of your

physician " .

I've been through all kinds of glandular problems in the past and I'm still

dealing with at least one of them - adrenal gland exhaustion - which in reality

is synonymous the lack of " sex hormone " production, since that's where they're

produced.

The danger here is that there is a very tricky balancing act involved - if you

take too many hormonal replacements it will have the opposite effect of what

you're trying to do - instead of " taking the load off of the glands to allow

them to heal " , if you take too much for too long the glands will actually

atrophy, meaning they'll get even worse.

It's analogous to muscle atrophy from being bedridden or in a cast - when I tore

my left Achilles tendon in 1999 I was in a cast for 3 months after surgery, and

was not allowed to let that foot even touch the ground, let alone take a load,

because using those calf muscles may have strained the tendon, causing it to

re-tear, or torn the stitches out.

When my cast finally came off I was horrified - my once muscular calf had shrunk

to the size of my forearms! Even worse, one of the two primary calf muscles

never recovered despite years of PT and strengthening exercises - it's still

visibly shrunken. I went from being a pretty darn good 38 year old 6'2 " tall

athlete who could still jump over a foot above a basketball rim (couldn't dunk

because my hands are too small to palm a basketball) to a guy who couldn't even

jump high enough to touch the frigging net! That's a loss of about 24 " of

vertical leap folks....and it's permanent.

<rant>

My point is that your various glands are just like muscles - you need to walk a

very fine line between providing a bit of support without taking their jobs away

from them completely. BE CAREFUL WITH THOSE PRODUCTS! And NEVER, EVER take them

without constant medical supervision and regular blood tests!

<end of rant>

[Guest guest]

Problem is, Astro, that if everyone waited to get appropriate, informed

treatment from their docs, most of us would not get it.

Docs have brains and education. Patients have brains too, and can be educated

if they desire it.

If one can find a doc who will take them seriously and who will treat THEM

instead of lab test results, that is awesome.

IF it isn't happening, people can and will take matters into their own hands.

We can't allow docs to allow us to remain ill, when there are ways to be well.

Jaye

>

> " Re: Interstitial cystitis - diagnosis

> Posted by: " zahavi " zahavi100@... z100a2002

> Thu Feb 10, 2011 12:44 pm (PST)

>

>

> Find a good hormones, bio-identical hormones.

>

> Adrenal,thyroid and sex hormones. "

>

>

> I have to say that those two statements, on their own, contain some VERY

dangerous advice. You should have added something to the effect of " only take

(any of) these products while under regular and constant care of your

physician " .

>

> I've been through all kinds of glandular problems in the past and I'm still

dealing with at least one of them - adrenal gland exhaustion - which in reality

is synonymous the lack of " sex hormone " production, since that's where they're

produced.

>

> The danger here is that there is a very tricky balancing act involved - if you

take too many hormonal replacements it will have the opposite effect of what

you're trying to do - instead of " taking the load off of the glands to allow

them to heal " , if you take too much for too long the glands will actually

atrophy, meaning they'll get even worse.

>

> It's analogous to muscle atrophy from being bedridden or in a cast - when I

tore my left Achilles tendon in 1999 I was in a cast for 3 months after surgery,

and was not allowed to let that foot even touch the ground, let alone take a

load, because using those calf muscles may have strained the tendon, causing it

to re-tear, or torn the stitches out.

>

> When my cast finally came off I was horrified - my once muscular calf had

shrunk to the size of my forearms! Even worse, one of the two primary calf

muscles never recovered despite years of PT and strengthening exercises - it's

still visibly shrunken. I went from being a pretty darn good 38 year old 6'2 "

tall athlete who could still jump over a foot above a basketball rim (couldn't

dunk because my hands are too small to palm a basketball) to a guy who couldn't

even jump high enough to touch the frigging net! That's a loss of about 24 " of

vertical leap folks....and it's permanent.

>

> <rant>

>

> My point is that your various glands are just like muscles - you need to walk

a very fine line between providing a bit of support without taking their jobs

away from them completely. BE CAREFUL WITH THOSE PRODUCTS! And NEVER, EVER take

them without constant medical supervision and regular blood tests!

>

> <end of rant>

>

[Guest guest]

> If one can find a doc who will take them seriously and who will treat THEM

instead of lab test results, that is awesome.

>

> IF it isn't happening, people can and will take matters into their own hands.

We can't allow docs to allow us to remain ill, when there are ways to be well.

>

> Jaye

All the MDs and NDs I saw for thirty years didn't do the right tests.

For my thyroid just the TSH, which really just measures pituitary output.

I had to find a nurse practioner who did the antibody tests and will do Free T3

and Free T4. I have had autoimmune thyroid for a long time and now other

tissues are attacked. I don't want a diagnosis. I know it's autoimmune. I

want a good treatment that works!

Sue