Interstitial Cystitis Archives

Interstitial Cystitis

[ Interstitial Cystitis Archive ]
[ Main Archives Page ] [ Glossary/Index ]
[ FAQ ] [ Recommended Books ] [ Bulletin Board ] 		   Search this site!
 
        

Interstitial Cystitis

Posted by Beth on March 29, 2001 at 01:21:21:

Dear Dr. Stoll -

I have read through your web site, done searches on IC and have tried to gather as much information as possible on your IC treatment before asking this. I'm going to go buy your book and work on SR. I'm amused by people who don't think that this is worth trying, maybe they haven't had IC long enough!

I've had IC for almost 9 years. My basic symptom is burning pain whether I urinate or not. I don't really have the urgency issues. I have had many cystos and have inflammation and have had some Hunner's ulcers. My symptoms have come and gone over the years through the use of DMSO (which I get regularly), along with a distension and urethral dilation I did yearly (I say did because I refuse to have it again). I also take 35 mgs of Elavil and pyridium plus daily, and macrodantin if I have sex. I have developed an addiction to vicodin as a result of this problem. I am currently sober, and that requires that I once again seek another method, and if possible a cure.

I have met or spoken to a number of people who have been "cured" of this disease (or condition). Of the three people, one spontaneously recovered, one did long term anti-biotics with long term anti-fungals (nystatin) and one took nystatin and did a anti-candida diet for a year.

I also have a very mild case of fibromyalgia which tends to manifest itself as fatigue, but only occasionally pain. I also used to have IBS symptoms that went away as soon as I started taking magnesium supplements (I noticed a mention of magnesium deficiency on your website). I'm definately going to pursue the SR, but I'd like to know if you think it would be worth trying the nystatin therapy as well?

Thanks for your time.

Beth



Re: Interstitial Cystitis

Posted by Vince F on March 29, 2001 at 10:35:46:

In Reply to: Interstitial Cystitis posted by Beth on March 29, 2001 at 01:21:21:

I cleared up a burning, urgency to urinate in 4 days. I
was trying cranberry juice for a week and when I read it
could take a month I went to my super antibiotic, cayenne/
salt. Boiled it in water to try to get it into my bladder
and drank it and in 4 days the problem was solved. It was
hot going down until I chilled the pint I had cooked up
and I was able to drink that down in one shot with no heat.
I also tried injecting it into my urether with an eye
dropper to get it in both ways and speed the process. It
helps so many things from atheletes foot that is Gone after
many years of it coming and going to sore cuts wether infected
os just caused to sore throats and sinus congestion and it
usually solves external problems in minutes or hrs and
rarely a need for a 2nd treatment so I Try it on Eberything
that I can figure how to. It even gets rid of warts and
sore muscles from strains. Made a New dog of one who had
food sensitivies or a digestive peoblem and his Whole
personality changed for the better. Since his name is Diablo
I should have figured that something Hot would have cured
him. I Swore I would solve his problems before he died and
did.

VF



Re: Interstitial Cystitis

Posted by georgia on March 29, 2001 at 13:50:48:

In Reply to: Re: Interstitial Cystitis posted by Vince F on March 29, 2001 at 10:35:46:

HI THERE ,

I read your post on your interstitial cystistis and i have also some symptoms ,not frequency ,never wake up at night ,but pressure in urrethra and burning on and off (better while i void).If i am upset ,my urrehtra burns so i know it s linked to emotions.I have had that on and off for 13 years and had once my urrthra dilated .I did not want to redo it because of pain and it did not help me anyhow .I also had dmso ,did not help much .
Homeopathy has helped me alot in the past (you have to find a classic homeopath who takes your case seriously)so i am continuing on that road ,but like you i want to get rid of this (who would not ,it makes your life miserable).I wonder if i have a fungus too.how can you get the anti fungal treatment .any natural ways of doing it???The skilled relaxation helps alot ,i have been doing it for 4 months now .I have set backs when i feel stressed but i look at this board for encouragements in that case and that helps .I met great people on this board!!!
Also ,i believe (and it is only my opinion)that the mind and body is very connected (eventhough i read that interstitial cystitis is not a psychosomatic disease)and for my case i think i know why i hold my tension there.
I went in fact to my biofeedback therapist yesterday and she showed me on the screen how tense my vagina-anal muscles react (sorry you guys for the dscription).She also showed me how much i have improved in 2 months by doing kegel exercises to relax .It teaches your brain to relax as you do the kegels and release the muscles .So do have a biofeedback check your skilled relaxation once you have done it a few weeks .
A good book to read also i think is ..the mind body prescription by j.sarno .it explains the mind body connection in so called diseases.I am still reading it now so i have not finished it yet.
I hope you find your way aout of this and i believe we will if we stick to the relaxation .look under the archives ...testimonials ..i read about womwn getting so much better and having no more syptoms of ic after doing the relaxation .stick with it though and if you feel depressed ,read again and again the testimonials ,it helps .I do not know where you live ,i am i nsan francisco and if you want you can email me if i can help in any way .
I am also going to post a message to Vince regarding the cayenne/salt treatment.

keep up the good work and any info is appreciated . Iam sure there are many people in our case that read these posts ,

namaste ,


Georgia



Re: Interstitial Cystitis....for vince f....question

Posted by georgia blancquart on March 29, 2001 at 13:57:04:

In Reply to: Re: Interstitial Cystitis posted by Vince F on March 29, 2001 at 10:35:46:

Hi Vince,


Can you explain to me the cayenne /salt treatment and how you drink it and how many days ???Did you have interstitital cystitis and how long????where do you buy the cayenne and how much do you put in the water to boil and how long .I am clueless but would like to know .it sounds great .
thank you for answering my questions ,i hope it helps alot of us out there ,

namaste ,

Georgia

Follow Ups:


Re: Interstitial Cystitis....for vince f....question

Posted by georgia blancquart on March 29, 2001 at 13:59:53:

In Reply to: Re: Interstitial Cystitis posted by Vince F on March 29, 2001 at 10:35:46:

Hi Vince,


Can you explain to me the cayenne /salt treatment and how you drink it and how many days ???Did you have interstitital cystitis and how long????where do you buy the cayenne and how much do you put in the water to boil and how long .I am clueless but would like to know .it sounds great .
thank you for answering my questions ,i hope it helps alot of us out there ,

namaste ,

Georgia



Re: Interstitial Cystitis

Posted by Beth on March 29, 2001 at 14:40:53:

In Reply to: Re: Interstitial Cystitis posted by Vince F on March 29, 2001 at 10:35:46:

Unfortunately, cayenne pepper is right out. I also have to watch what I eat very strictly. I cannot eat any citric or malic acid and pretty much every fruit except pears, and even then I can only have about 1 a week without it irritating my bladder. I cannot even have the tiniest amount of cayenne pepper or spicy foods without my bladder becoming painful. I also cannot have cranberry juice.

The symptoms you describe are for a bladder infection, which is NOT what I have. I have IC which does not show bacteria in the bladder. Your solution would put me in the emergency room screaming with pain.

But thanks anyway.

Beth



Re: Interstitial Cystitis....for vince f....question

Posted by Vince F on March 29, 2001 at 14:50:57:

In Reply to: Re: Interstitial Cystitis....for vince f....question posted by georgia blancquart on March 29, 2001 at 13:59:53:

Georgia,

I can't be sure what I had IC/UTI but it burned every
time I urinated and I had little cuntrol and had to Run and
it wasn't pleasant at all and the firt time I ever had the
problem.

had for me to give amounts of salt and cayenne since I
just do it by eye and taste. I would say I probably put
1/8 teaspoon of each in 3oz of hot tap water when i gargle
with it but maybe less. In the 1 qt pot I boiled it in I put
about a pt of water and just put the c/salt in and maybe 1/2
teaspoon of each. You can easily adjust it to suit you and
if you are not affraid of hot spices bear with the heat.
Sometimes when freshly made the cayenne sits on the top and
I cough or react but when only One treatment can solve
what i am trying to it seems like a minor annoyance and I
got into mixing up cayenne, crushed red pepper and oregano
to put on many foods. My mom used to cook with garlic but
it was subtle because she would cook it down in oil so you
never really tasted it which is how I usually use the mix
so it is present but not overpowering usually.

About the liquid chilling it really took away the heat and
I chugged the pint one day since I saw it was doing
something and I had added it to the cranberry juice that was
kept in the frige and it still made that taste Hot like 190
proof liquor so it acted different in the juice.

If you try the c/salt be brave and dilute it if it comes
out too strong for you since you can always make it stronger
again. I make it agreable to taste in a way since it isn't
going to help unless i get it down or can garle with it and
cough it out. It seems to mellow as it sits but the c will
settle and not hit you as fast. With all it has done for me
mine I deal with the discomfort to get it in me fast like
when i am coughing my head off.

Funny when I first gave it to my hound I tried to put it
into rice and make balls but they fell apart and he was
geting a tongue or snoot full but he wanted the rice so
shook it off and walked around and came back a few times to
get more. That didn't cure his digestive problems but helped
a lot so I made up capsules and only gave him 2 and he is
like New and eating Everything so you can see I will try
to figure out a way to use it or get in in even to making
nose drops out of it. That made my eyes tear the first time
and I made it Very diluted but I think i was tense and
fearing burning my sinuses since I was able to tolerate a
stronger mix after that and it sure did work good and fast.

Hope it helps you..

VF



Re: Interstitial Cystitis

Posted by Vince F on March 29, 2001 at 14:58:51:

In Reply to: Re: Interstitial Cystitis posted by Beth on March 29, 2001 at 14:40:53:

Beth,

why do you have to watch your diet so closely ?? I had
eaten something that irritated my stomach and the cayenne
helped it as it does so many things that hit me.

My UT problem started when I moved a back support down to
my abdomen because i noticed it restricted breathing when
exercising and figured it affected my bladder by restricting
it empting which I think can cause IC.

VF



Re: Interstitial Cystitis

Posted by Beth on March 29, 2001 at 16:26:05:

In Reply to: Re: Interstitial Cystitis posted by Vince F on March 29, 2001 at 14:58:51:

Vince -

Me and pretty much everyone else with IC has to watch their diet. It's the PRIMARY treatment for IC. No:

Citric Acid
Malic Acid
Alcohol
spicy foods
neutrasweet
bananas
coffee
msg

I can't eat any fruit pretty much. There's more but this is the basic list my Dr. gives everyone with IC. IC used to be called "allergic bladder" and it was treated with dietary restrictions alone. My Dr. has seen cases cure up just by eliminating these foods alone. He's had at least 10 cases whose symtoms went away by eliminating just neutrasweet.

-Beth

Follow Ups:


Re: Interstitial Cystitis....for vince f....question

Posted by georgia on March 29, 2001 at 20:58:32:

In Reply to: Re: Interstitial Cystitis....for vince f....question posted by Vince F on March 29, 2001 at 14:50:57:

Hi Vince ,

thanks for the advise .I do not know if i have i.c but i have a varient of it (urrethral pressure and burning on and off)how long did you have your bladder problem???
I am worried too to use cayenne/salt since it is hot and i do not even like spicy foods .
do you buy the cayenne in a special place???please let me know .is it plain cayenne pepper .
I do notknow if i can do it but i should try it .where did you hear about this treatment ???thank you for your answer,

namaste ,

georgia



Re: Interstitial Cystitis....for vince f....question

Posted by Vince F on March 30, 2001 at 01:02:59:

In Reply to: Re: Interstitial Cystitis....for vince f....question posted by georgia on March 29, 2001 at 20:58:32:

Georgia,

I had the problem about a week or two and was trying the
cranberry that seemed to help a little but like i said,
reading it could take a month or more I tryied to think of
what else I could do and since I found that cayenne helped
everything else I used it on I figured it was worth a shot.

I just use cayenne i get in the food store and a chef
friend told me about it for cuts and puts it right on an
open cut which I hesitate to do since I don't think I would
want it In my blood stream but that is my feelings and
think i did read something similar. After he told me about
it I decided to try adding it to the salt I used for similar
things and it works a Lot better. Like I said try chilling
it and it should be pretty mild. I would make it tolerable
but they say cayenne actually soothes after the heat passes
though everyone has a different tolerance. They use it in
sports creams now and for Shingles and say it depelets
substance P which causes pain and also releases endorphins
that are natural opiates. I even read that it can become
addicting but Not Me!.

with all the things it has helped I keep looking for more
I made a plaster and cured a stiff neck that when I moved
my head, pain shot over my head to my forehead with one
treatment. They Say it is good for sunburn. Must draw the
pain/heat out.

VF



Re: Interstitial Cystitis

Posted by beegs on March 30, 2001 at 10:30:06:

In Reply to: Interstitial Cystitis posted by Beth on March 29, 2001 at 01:21:21:


how do they daignose ic?



Re: Interstitial Cystitis

Posted by Vince F on March 30, 2001 at 12:04:27:

In Reply to: Re: Interstitial Cystitis posted by beegs on March 30, 2001 at 10:30:06:

I believe that IC is very similar to UTI without infection
so inflamation instead.

VF



Re: Interstitial Cystitis....for vince f....question

Posted by georgia on March 30, 2001 at 16:25:00:

In Reply to: Re: Interstitial Cystitis....for vince f....question posted by Vince F on March 30, 2001 at 01:02:59:

Hi Vince,

thank you ,i should try it even though my problem is inflammation /burning of urrethra on an d off for a long time .
so i will buy cayenne and salt and boil it and let it chil out .can i put in the fridge to cool off???can you drink it straight up???how much a day????i hope i will bo ok if i try it .is there different kind of cayenne or jsut the cayenne pepper .do ypu buy in bulk?/let m know ,sorry i am clueless,

thanks ,

Georgia



Re: Interstitial Cystitis....for vince f....question

Posted by Vince F on March 30, 2001 at 18:50:54:

In Reply to: Re: Interstitial Cystitis....for vince f....question posted by georgia on March 30, 2001 at 16:25:00:

Georgia,

Yes, you chill it in the frige.. I just bought it in a food
store and I Did buy in bulk since I bought a 1 lb container
at a wholesale grocer that a chef friend took me to but that
will last a Long time even at the rate I use it.

I think you have to measure and gauge taking it but how
it affects you. some people are more sensitive to hot spices
so i think mixing and maybe diluting it if it is too strong
for you is the way to go. I find that i can tell when it is
too weak by the taste. I use salt so like it to taste salty
and salt used to help a lot of what the mix does so I feel
the salt helps but wemen seem to be more sensitive to salt
so decided for yourself what is comfortable or you can
tolerate. I don't add enough salt to gag me, just a salty
taste and with the cayenne if it makes me cough like when
first mixing it and the pepper is siting on the top when I
just mix it up with hot tap water which I usually do for a
sore throat or cut I stir it around to try to get the
floating pepper to settle though cooking it which i only
did once for my urinary problem it seemed to settle to the
bottom of the pot. For the UT problem I wanted the rater to
look red because i felt the essence would get where i wanted
since I didn't think the particles would. Like with tea. If
we swallowed the crushed leaves I think they would go through
the intestines mainly.

since cayenne is said to soothe I feel it may help
inflamation even without infection..After the heat psses.
Hope it helps you like it did me..and my hounds. Just gave
them some peperoni pizza I ate and so far so good. Interesting
with them that they or the one with the digestive problems
is drinking less water. With him i think he had a bowel
problem and maybe the extra water was trying to flush out
irritants.

VF

Follow Ups:


Re: Interstitial Cystitis

Posted by Beth on March 30, 2001 at 19:11:55:

In Reply to: Re: Interstitial Cystitis posted by Vince F on March 30, 2001 at 12:04:27:

Diagnosis is done with a cystoscopy. They put a camera in your bladder and look at the bladder wall. Sometimes they do a biopsy but I have not had this and I've heard the results of the biopsy can be wrong. My Dr. has seen so many cases, that he knows what it looks like now. Sometimes Along with inflammation there are ulcers in the bladder, which I have. They are called Hunners ulcers.

If you want to know about IC, check out:

http://www.ichelp.com


Follow Ups:


Re: Interstitial Cystitis (Archive.)

Posted by Walt Stoll on March 31, 2001 at 07:15:11:

In Reply to: Interstitial Cystitis posted by Beth on March 29, 2001 at 01:21:21:

Hi, Beth.

I wish I could claim this approach as "MY IC treatment". I am only passing on what others have finally found to be the most effective explanation of a basic cause of this terrible affliction--AND what I have found in my own practice to work safely and inexpensively (with the added bonus that general health is improved at the same time).

There are testimonials about this under IC, under bracing, under testimonials and (I think) under testimonials in process.

Since one cannot get C-RS unless there is dysbiosis and one cannot get dysbiosis without LGS AND SR is still the most important single thing for LGS...........Can you see where I am going here?

The Nystatin cannot GET to the bladder since it is not absorbed. However, once the LGS is dealt with, Nystatin can be an effective way to deal with the C-RS.

Making sense?

Walt



Re: Interstitial Cystitis (Archive.)

Posted by Walt Stoll on March 31, 2001 at 07:22:11:

In Reply to: Re: Interstitial Cystitis posted by georgia on March 29, 2001 at 13:50:48:

Thanks, georgia.

Everyone has to remember that fibromyositis is basically caused by bracing as is IC. SO, it is very common for them to be associated in the same person. Besides, CFS is mainly caused by high levels of lactic acid in the chronically contracted muscles. I went through this mechanism several times a few years ago. I HOPE I was farsighted enough to archive them since the explanation is involved and requires people to understand muscle physiology.

Walt

Follow Ups:


Re: Interstitial Cystitis (Archive.)

Posted by Beth on April 05, 2001 at 20:58:39:

In Reply to: Re: Interstitial Cystitis (Archive.) posted by Walt Stoll on March 31, 2001 at 07:15:11:

Thanks Dr. Stoll. I see your point, and it's well taken. As you mentioned in one of your articles, if someone has IC, then they have a lot more going on than just that. I've known that for quite some time about myself, that it was only one of many symptoms. I will be proceeding with the SR.

Follow Ups:


[ Interstitial Cystitis Archive ]
[ Main Archives Page ] [ Glossary/Index ]
[ FAQ ] [ Recommended Books ] [ Bulletin Board ] 		   Search this site!