Interstitial Cystitis

[Guest guest]

Interstitial Cystitis is a real possibility for anyone with Reiters. Years ago

they told me that only women could get it. However, since then doctors and

scientists have discovered that men can also have insterstitial cystitis. I was

diagnosed with it in 1988. They scoped the bladder and took tissue samples.

It has only been in the last two years that I have had true relief from bladder

problems. Detrol LA 4 mg daily, sometimes twice that is necessary, has relieved

much of my problem. Without the detrol I am constantly wet from bladder

irritation causing uncontrolled contractions. Antibiotics have helped on

occassion, but rarely. Nothing is ever cultured in lab tests.

Ray Neal

HLA-B27 negative, Reiters/Reactive Arthritis, Fibromyalgia, Sjogrens Syndrome

[Guest guest]

Thanks, Ray. I guess I thought interstitial cystitis was a " female " problem

as well. The info on the website does mention a small percentage of men have

interstitial cystitis also. It also mentioned that the Interstim like I have is

being used experimentally as a treatment. My urologist said I would be her

first patient with a neurogenic bladder and interstitial cystitis but thought it

was certainly possible. I'm really not sure if I have iterstitial cystitis. I

have been really feeling sick this week. I don't know if it is sinus, a UTI, a

Reiter's flare, withdrawal from the Effexor or what. I have a doctor's

appointment this afternoon. I've also been decreasing my prednisone and that

may be an issue as well. The doctor may not know either but I hate to start a

long weekend feeling like this.

Kay

[Guest guest]

.. Antibiotics have helped on occassion, but rarely. Nothing is

ever cultured in lab tests.

> Ray Neal

It is so hard to get past this observation with almost all doctor's

be they urologists, internists, ob-gyn, primary care..it has caused

me so much frustration because most if not all doctors make

judgements based on scientific method..therefore if nothing is

cultured in either urine or tissues, then obviously there is no

infection..i have just about decided to keep my mouth shut now when

culture comes back negative..this is just one more of the conundrums

associated with Reiter's and probably other spondy's although i'm not

sure myself...Oddly enough as Ray has said here or somewhere else,

they will still on occassion administer antibiotics (usually

Doxycycline) and in some cases the medicine provides some short-lived

relief..I'm going through this right now..Had a urine culture done

Monday, came back negative and my doctor said the burning could be

attributed to ReA..I was really hoping for positive so i could get

some gatifloxacin (Tequin)..it has properties which give me

relief .don't know why but don't care .i take relief wherever i can

find it..

Two yrs ago in July, young doctor who was chief-resident and held a

Doctorate (PHD) in Rheumatology, said to me, when referring to

absence of

culturable bug,...of course not, it's Auto-Immune..And that's the

reason why oftentimes white cell count can be elevated in urine

analysis and yet nothing grows in petrie dish. The underlying cause

is auto-immune...unfortunately this person is no longer around and

when i repeat what he told me, virtually everyone says something

like, 'uh huh'..

If any of you are looking for a very special rheumatologist in and

around Portland area, that's where Dr D------ is practicing..

jeff lanneau

[Guest guest]

I don't think have posted this experience to the list before, but I have in

other lists. If you have read this before, please just delete it, but it's

out of my experience and I have noticed that it's often true for me. I had

a series of what appeared to be uti's in my early 20's-- NOTHING would clear

the things up. I went to another doc since my regular changed jobs. He was

one of those guys who believed that if it ain't in the lab, you aren't

feeling it. As it turned out he tested the urine sample and nothing

cultured. He told me i didn't have an infection. BUT he did say that in some

ppl eating or drinking food that we are allergic to will give symptoms that

are identical to a UTI. I have since that time tried first of all to keep

LOTS of cranberry juice on hand (it does something to urine to keep bacteria

from creating havoc in our urinary tract). I begin this at the first twinge.

Not just a glassful as is often recommended, but as I would drink water(yeah

I know it's nasty, but it does such good things). The other thing has been

to try to remember what I ate or drank the day before and often I have eaten

something I'm known to be allergic to. Another thing I have noticed is that

often that in the spring when the weather begins to warm up, I get this

stuff. The cranberry juice is the only thing that works for me, sad to say.

I don't like it but it's great that at least something works.

Best of luck to those of you who have this plague. I hope you find something

that works as well for you as Cranberry Juice does for me.

[Guest guest]

I saw my primary care doctor yesterday because I had been feeling so ill all

week. Nausea, vomiting , weakness, etc. It turned out that although the dip

stick test at the urologist was negative, the culture was positive. She thinks

that the infection is probably in my kidneys because I have been so sick.

Although I think Effexor withdrawal may have been an issue and I may also have a

sinus infection, the main culprit is the UTI. It kind of goes to show how

difficult diagnosis can be when there is a chronic illness.

Kay Braddock

Speedway German Wirehaired Pointers

Paint Horses

[Guest guest]

Nausea, vomiting , weakness, etc. It turned out that although the

dip stick test at the urologist was negative, the culture was

positive.

i know this sounds strange but i'm glad they found you had a UTI..I

think you know what i mean...i don't know exactly how bad it had

gotten for you, but uti's can drop even the strongest person to their

knees..The thing is, once you start the antibiotics, the symptms will

most likely disappear in a few days; but if you'll allow an

observation, as one who has had a few uti's,, follow inst to the

letter and take every last capsule or tablet..i wish you a speedy and

full recovery..

jeff lanneau

[Guest guest]

I have since that time tried first of all to keep

> LOTS of cranberry juice on hand (it does something to urine to keep

bacteria

> from creating havoc in our urinary tract). I begin this at the

first twinge.

> Not just a glassful as is often recommended

I, too, have drank cranberry juice until I thought it was running out

of my ears. Then I found capsules of cranberry concentrate. I take

one (500 mg) every day, whether I'm having a flare-up or not, with a

glass of orange juice. When I feel a flare-up coming on, I switch

the orange juice to cranberry juice, drink gallons of cranberry

juice, and still take the capsule. Maybe it's my imagination, but I

really think the flare-ups are getting farther apart.

My latest is another iritis flare-up, which I then found out

yesterday has led to a secondary glaucoma in my right eye. I started

the Timoptic drops, and now have a nerve that keeps twitching in my

eyebrow. It's always something....

Kathy

[Guest guest]

Hi Judith,

Milk Thistle helped me not tp have to pee so much.

I took vicodin for pain every 4 hours for over a year.

I never got hooked, and it was easyer on the liver when I took it with a

large glass of water.

This is a very long artical form the state university new york.

They claim to be able to help.

http://www.emedicine.com/med/topic3392.htm

Ron

interstitial cystitis

I've been pretty sick. I injured my pelvis from a bad fall but

they're worried that it has stirred up new and maybe not dealzble

with musculoskel pain.

I am peeing some nights 15 or more times and some days. Life is hell

unlike I've ever experienced. IC within ME/CFS==does anyone know a

list? The google search produced very grim stories but not all were

me.. My laptop died and sitting is hell also . I've not been here

for over a month so if you know anything assume I'm not reading until

I let you know. And cc to my private addie which I try to open in

the a.m. during breakfast.

Food ssensititiv are one factor and contrary to much that we

believe. My spirit is ebbing after so many years. it says yogurt is

bad! and anything with spice. I am not the competent person I was

for so long and have little to no get up and go.

I see an IC specialist in about 2 weeks. More pain for exam. And

the flank (right) pain is getting to me. I do think I've gotten less

tolerant of pain in general.

Maybe there is no answer. I don't know. I did have such

determination in practice. Anyway just send concrete answers not

wishes. I know so many of you do care but I don't have the energy to

answer.

Much love,

Judith

This list is intended for patients to share personal experiences with each

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.

[Guest guest]

How about seeing a chiropractor? It sounds like some kind of nerve-

related damage?

Neurontin may help, or anything in the valium family.

[Guest guest]

Thanks Ron and to the others who answered. Insterestingly I stopped

taking milk thistle a bit ago. After reading your post I started and

increased the dose (enz ther--4 tabs up from 2). My nonCfs doc

recommended Imiprimine, used also for eneureses and nerve pain as

well as as a tricy antid. I took a tad of it because of med

sensitivities and that I'm on an SSRI even though they said it was

okay to combine. Last night was much bettr. I was told that the

fall I had might have affected a nerve that goes from the low back to

the bladder. I don't know.

I have been sick so long that I'm in such bad shape re muscular

strenth and bones and depression I am trying very hard to hold on.

My appetite is terrible also. So I have lots to do to motivate

myself to take charge again.

Thanks again. And sans a laptop it isn't easy to read or write much.

Judith

> Hi Judith,

>

> Milk Thistle helped me not tp have to pee so much.

>

> I took vicodin for pain every 4 hours for over a year.

> I never got hooked, and it was easyer on the liver when I took it

with a

> large glass of water.

>

> This is a very long artical form the state university new york.

>

> They claim to be able to help.

> http://www.emedicine.com/med/topic3392.htm

>

> Ron

>

> interstitial cystitis

>

>

> I've been pretty sick. I injured my pelvis from a bad fall but

> they're worried that it has stirred up new and maybe not dealzble

> with musculoskel pain.

>

> I am peeing some nights 15 or more times and some days. Life is

hell

> unlike I've ever experienced. IC within ME/CFS==does anyone know a

> list? The google search produced very grim stories but not all

were

> me.. My laptop died and sitting is hell also . I've not been here

> for over a month so if you know anything assume I'm not reading

until

> I let you know. And cc to my private addie which I try to open in

> the a.m. during breakfast.

>

> Food ssensititiv are one factor and contrary to much that we

> believe. My spirit is ebbing after so many years. it says yogurt

is

> bad! and anything with spice. I am not the competent person I was

> for so long and have little to no get up and go.

>

> I see an IC specialist in about 2 weeks. More pain for exam. And

> the flank (right) pain is getting to me. I do think I've gotten

less

> tolerant of pain in general.

>

> Maybe there is no answer. I don't know. I did have such

> determination in practice. Anyway just send concrete answers not

> wishes. I know so many of you do care but I don't have the energy

to

> answer.

>

> Much love,

>

> Judith

>

>

>

> This list is intended for patients to share personal experiences

with each

> other, not to give medical advice. If you are interested in any

treatment

> discussed here, please consult your doctor.

>

>

>

>

[Guest guest]

It is caused by energetic parasites in the front aspect of the

second charka which is directly over the bladder. I have had good

results with half a dozen cases, using my healing work. This was

with both males and females. The emotional component is worry and

stress. I can do this work long distance if requested.

Dwight Munson

>

> Can anyone suggest any help with this please apparrantly the mucus

lining on the bladder disappears and then the urine causes

irratation of the bladder wall. This is in a male and is usualy

diagnosed in females.Thanks a

>

>

[Guest guest]

There's a book called " Along the Healing Path " about a woman who cured herself

of it. I

came across the reviews on Amazon.com recently and it sounded as though her

protocol

was effective for IC. I have not read the book or tried the treatment because I

have a

different health condition. But I was inspired by the author taking her health

into her own

hands and healing from this painful, chronic condition.

[Guest guest]

http://www.ic-network.com/forum/

If you want to get rid of IC, go here and learn.

I had it bad in 2005 and now I am cured thanks to mostly natural things like

cornsilk herb, cysta-Q and cysta-protek by Algonot.

You must go on the ic diet and get rid of the irritation. It is on the web site.

I have had only one bad flair in 2 years now and it was cause I stopped taking the above.

Also, drink Evian water.

ellie

Ellie GunterWeb Designerwww.emaginedesigns.com727-393-2226

Re: PRERELIEF FOR ACIDITY, BLADDER SPASMS & INTERSTITIAL CYSTITIS

>I don't drink sodas of any kind either .All that sugar and corn syrup in it too. Oh the sodium content too is bad 35 milligrams. Since i am on low sodium 800 mg I rather eat some fruit or raw veggies instead of drink a soda.I will try hat relief too. Domini that is why i am going to the urologist too. But also have been watching what i drink too. But my Regular GYN told me I had IC. Now go to see this urologist. But yes sodas are are bad if you have GERD too. I also am careful of the OTC meds too somke have salt and a bunch have caffine in it too. so please red the back of the label gals and guy's too. But thnaks for the information dominie. Heidi> FROM A READER TONIGHT: "You indicate that acid promotes disease. I was > just telling this to gals in my fibro class, some of whom are still > drinking sodas and I am telling them that getting off soda changed my > life. I was hardly ambulatory from joint pain, but got off soda > completely and it helped. I still have joint pain, but reducing acid > is key. I also take a pill to reduce acid. Prelief is a supplement > that my urologist gave me to reduce acidity and possibly help my > interstitial cystitis. Anyone can take Prelief. It safely reduces > body acidity.">

[Guest guest]

I received a lot of advice from newsletter readers about bladder

problems - see http://www.fms-help.com/bladder.htm

[Guest guest]

I printed up dominies inf on bladder problems.

it is a great resource and full of information too.

I have cut back even drinking non caffeine tea and no coffee at all.

More water also some home made lemonade.But also watch what i eat too.

But I would suggest reading her information too on Bladder problems.I

showed it to my Dr. who read some . She also leafed though it. She

told me that was great Inf.

The other site is good too.But I think dominies is the bestest.

I also don't drink nothing diet at all and am switching from white

sugar to stevia powdered liquid too.

Hugs Heidi

[Guest guest]

Does anyone have any ideas/suggestions concerning treating interstitial

cystitis?

Also, does anyone know anything about " Prelief " ?

Many thanks.

Nan

[Guest guest]

Krystal,

This is a difficult one! Many IC patients cannot tolerate supplements. I am referring you to a friend of mine who is an expert in nutrition with IC; she may be able to help if you give her specifics. She is not a dietitian, but an IC sufferer who has written books and chapters on nutrition for IChelp.org.

Her name is Gay Sandler. Her e-mail is: sandlercats@...

Good Luck.

Debra Brown-Grossman, M.P.H.,R.D.,C.D.E.62 So Fullerton Ave.Montclair, N.J. 07042973-655-1335/973-655-1336(fax)

[Norton AntiSpam] Interstitial Cystitis

I have a pre-op band patient with Interstitial Cystitis who claims she cannot take any form of vitamins because it causes urinary burning and cramping. Any ideas to help her meet her vitamin needs after surgery?

Thanks in advance,

Krystal

Krystal Cameron, RD, LDN

Registered Dietitian

New Life Center for Bariatric Surgery

200 Ft. West Blvd

Building One, Suite 200

Knoxville, TN 37922

(865) 694-9676

P Value our planet… Please print this email only if necessary.

[Guest guest]

See Dr Alistair's protocols. E-mail Address(es): algail@...

Regards,

Renier

Interstitial Cystitis

Using the SCIO protocols and understanding the nature of the device as a biofeedback destressor has anyone any specific insight into how to alleviate Interstitial Cystitis. I have utilized protocols from Nirvana for Inflammation, Cystitis, and autoimmune. Any comments of guidance would be greatly appreciated. Thanks. Camille

[Guest guest]

My sister-in-law who had Interstitial Cystitis got complete relief from Cystoprotek.  It took a couple of months, but it really worked well and is a natural supplement.  Check it  out on Google.  Best to you....Nona Baker

On Sat, Oct 3, 2009 at 11:23 AM, willagee1967 <nrtrcs@...> wrote:

 

Using the SCIO protocols and understanding the nature of the device as a biofeedback destressor has anyone any specific insight into how to alleviate Interstitial Cystitis. I have utilized protocols from Nirvana for Inflammation, Cystitis, and autoimmune. Any comments of guidance would be greatly appreciated. Thanks. Camille

[Guest guest]

does anyone know the " cure " for this ,Interstitial Cystitis,

they say it's incurable--i don't believe or buy it. My beloved friend of 38

yrs suffers from this and she can't sleep because the pounding in her bladder

keeps her awake. Started when she had lazor surgery for cervical cancer when

younger hpv. She's had breast cancer 2x. So sleep is VERY important. Please

help me someone!!!

Warmly,

Rosie

[Guest guest]

Yes-- but it does take time! My IC came on slowly after a few UTI's and

antibiotics. The bad days were horrible and left me always worried about

bathroom access and so grumpy/moody from my constant discomfort and

frustration.The nights were the worst. I had many sleepless nights that left me

exhausted-- and it put a lot of strain on my work days and relationships. It is

the most horrible feeling! Then I started paying attention to what I ate and how

it affected the pain/frequency. When I cut out grains/fruit/sugar/dairy/vinegar

2 years ago it improved 85%. And on this diet the healing is continuing!!

Tell her to hang in there-- it does get better

>

> does anyone know the " cure " for this ,Interstitial Cystitis,

> they say it's incurable--i don't believe or buy it. My beloved friend of 38

yrs suffers from this and she can't sleep because the pounding in her bladder

keeps her awake. Started when she had lazor surgery for cervical cancer when

younger hpv. She's had breast cancer 2x. So sleep is VERY important. Please

help me someone!!!

>

> Warmly,

> Rosie

>

[Guest guest]

>

> does anyone know the " cure " for this ,Interstitial Cystitis,

> they say it's incurable--i don't believe or buy it. My beloved friend of 38

yrs suffers from this and she can't sleep because the pounding in her bladder

keeps her awake. Started when she had lazor surgery for cervical cancer when

younger hpv. She's had breast cancer 2x. So sleep is VERY important. Please

help me someone!!!

>

+++Hi Rosie,

Welcome to our group. I agree with you that the medicos are wrong to say it's

uncurable!

However, there are no quick fixes when going the natural route. That is because

her body requires all of the " proper nutrients " on a healthy program like this

one, in order for the body to heal itself the way Nature intended.

Also when a person has candida, the next stage is cancer, so your friend needs

to get on this program, to ensure she doesn't get cancer again, and to heal her

bladder. She probably has many other health issues as well.

In the meantime she could try drinking 4 cups of fresh parsley tea per day for

no more than 7 days to get some relief - here's the recipe:

http://www.healingnaturallybybee.com/recipes/recipe314.php

She needs to understand there are four main causes of all failing health:

1. Lack of proper nutrition and oxygen.

2. Accumulation of toxins, poisons, and waste.

3. Lowered vitality due to stress, shock, injury, emotional upsets, relationship

or financial worries and concerns, etc.

4. Nutritional status inherited from parents upon conception.

So it stands to reason health issues can only be reversed by getting healthy,

which is done by:

1) Consuming " proper nutrients " (my diet plus supplements) that every human body

requires in order to be healthy,

2) Eliminating toxins and foods that feed candida (they also feed bacteria and

cancer),

3) Eliminating damaging foods, and

4) Eliminating toxins in general.

When a person is healthy enough their own body will automatically " make " candida

(or any bug, cancer, etc.) change back into the organism it is supposed to be

when the body is healthy.

Please have your friend read two important articles so she understands what she

needs to do and why:

How to Successfully Overcome Candida:

http://www.healingnaturallybybee.com/articles/intro2.php

Curing Candida, How to Get Started:

http://www.healingnaturallybybee.com/articles/intro1.php

For encouragement and inspiration see these wonderful Success Stories by members

of this group:

http://www.healingnaturallybybee.com/success/index.php

The best in health, Bee