I Broke My Bladder: Inducing Interstitial Cystitis - Mothering Forums

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#1 of 33 Old 09-14-2008, 02:37 PM - Thread Starter
 
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I did a little science experiment this week and *ouch* I am in pain!! I OD'd on foods with high amounts of salicylates just for fun.

Because the lovely Caedmyn shared with me her story, I was thinking that they could be an issue with DS and his nightwaking. It still continues even though is digestion is perfect and all food allergies/intolerances seem to be removed.

I have no idea whay I decided to go this way of overdosing on them (when in him I would take out the high sal foods he is eating to see if they helped him, but I'm crazy I guess!) It was kind of spur of the moment when I was looking in my fridge and realizing these foods were high in food chemicals. He doesn't eat them in fact b/c I've noticed reactions and just chalked it up to his food allergies/intolerances and removed them from his diet.

DS seems to react to large amounts of cucumber, apple, oranges, grapes, pepper, peaches which almost certainly tells me right there. Hello mama, put your thinking cap on! As I told Caedmyn, I was late to this party for sure! I know y'all have talked about it before but it didn't get through! Too bad we stopped Houston enzymes b/c the No Fenol product is supposed to be excellent for this issue.

So I wasn't expecting my interstitial cystitis to come back but it did with a vengance. Even through the soul killing pain (brings a lot of emotions back I spent several years like this), I think this is so interesting!

I ate (among other things):
  • wintergreen xylitol mints
  • aged beef with peppercorns
  • pineapple
  • enzymes with pineapple and papain between meals (Wobenzym)
  • fermented apple juice
  • black chai tea (with cinnamon, ginger and cardamon)
  • tomato sauce

Mind you I have eaten ALL of these things for a very long time without a twinge (ex. for mints, wintergreen is supposed to be crazy high in salicylates) so I guess the combination certainly did me in. My symptoms are serious pain like a UTI, all the time except better during day for some reason. Worse enough to wake me up at night and then I can't get back to sleep b/c it hurt so much. (TMI alert...) my pee smelled horrible. I'm eating to reduce salicylates and taking enzymes right now, we'll see how long it takes to heal. Pee is already back to normal with diet change and lots of water, but bladder hurts like heck. The dx of IC is made on observation of a wearing away of the bladder lining, so I'm sure it takes some time to heal.

I will follow low salicylate diet/Failsafe for a while:
http://www.plantpoisonsandrottenstuf.../failsafe.aspx
http://www.fedupwithfoodadditives.info/
http://www.enzymestuff.com/dietsfg.htm

This is my old thread from 2005 about previous experiences with IC. Raw milk kefir was the first thing I did that made a huge difference for me.
http://www.mothering.com/discussions...itis+ibs+yeast

I haven't uncovered exactly why a person cannot metabolize food chemicals but that is my next research project. At first thought, I'm thinking methylation, minerals and gut flora.
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#2 of 33 Old 09-14-2008, 02:39 PM
 
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This is very interesting! I will have to read more about this...
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#3 of 33 Old 09-15-2008, 11:14 AM
 
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JaneS keep us posted. Very interesting.
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#4 of 33 Old 09-15-2008, 12:11 PM
 
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I wish you a speedy recovery! My mom has IC so I know how awful it can be!
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#5 of 33 Old 09-15-2008, 12:42 PM - Thread Starter
 
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I feel at least 50% better today after 48 hrs of eating low salicylate!

I also forgot to mention some symptoms I noticed which have also abated completely: tons of hair loss in shower when shampooing and pain and severe bloating in upper abdomen.

We'll see if this passes quickly. If so, I might be up for doing the experiment again but using Houston's No Fenol enzymes.
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#6 of 33 Old 09-15-2008, 01:11 PM
 
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Gee Jane! You're crazy!

However, I appreciate your volunteerism. Good thing you have kefir, etc to help you get back on the road. The Phenol always mystified me. My kids react to the same things that you have listed above. However, I still think, at least in our case, that we need to make our body more able to digest substance completely by dealing the yeast issue first. The biggest question of mine is “Are my kids able to have a healthy, functional gut who were born like this??" Only time will tell, yet I feel the time is running out.

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#7 of 33 Old 09-15-2008, 01:29 PM - Thread Starter
 
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The biggest question of mine is “Are my kids able to have a healthy, functional gut who were born like this??" Only time will tell, yet I feel the time is running out.
I know, I think about that all the time re: my DS. Several people IRL in my WAPF group have said they were a mess as children and are very strong now, some even when not eating traditionally at all. It's so very complex.

I feel like there are other factors to tolerating phenols than gut flora, perhaps issues that gut flora issues exacerbate such as mineral deficiencies? I haven't been able to research much. My desk chair is not so comfortable right now! I need one of those exercise balls you sit on...
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#8 of 33 Old 09-15-2008, 01:32 PM
 
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Hi Jane, have you looked into MSM? I've read some reports of success using this to treat IC.
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#9 of 33 Old 09-15-2008, 02:04 PM
 
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Ok, so apparently my brain isn't functioning at a high level this morning because a lot of what you wrote went right over my head BUT, I too have IC. It was diagnosed about 5 years ago through exploritory laporoscopy. Hardening of the baldder tissue, visible broken blood vessels on the surface of my bladder, etc. Also had to do a HORRIBLY painful cath (bladder capasity and elimination test) exam. My IC had gotten bad enough that wearing jeans had even become too painful as when something pushed on me externally around my bladder area I wanted to keel over and die. I was given medication (but, didn't like the side effects and only took it for about a week) but somehow the IC went away on its own. It returned for a short bout while pregnant with dd and is now flaring up again with my current pregnancy as I figure my growing kiddo is agravating the sensitive bladder tissue.

Curious to know what kind of diet can be making this worse. The specialist who diagnosed me said nothing about any symptoms beign diet related or made worse by diet. Now I'm a bit annoyed at her.

~TRACY, wife to loving dh, mommy to dd (10/05), ds(12/08), 3 kitties, & 2 pups.
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#10 of 33 Old 09-15-2008, 04:07 PM
 
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:

I suspect I have IC. I'm curious about this diet...
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#11 of 33 Old 09-16-2008, 11:29 PM - Thread Starter
 
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Hi Jane, have you looked into MSM? I've read some reports of success using this to treat IC.
No, maybe I wasn't clear, my IC has been gone for quite some time. I was very surprised eating a load of salicylates brought it back! The cure for me it was healing my gut. Obviously I am still vulnerable though, that is concerning. I feel really good today and it's only slightly uncomfortable, I expect it to heal quickly.
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#12 of 33 Old 09-16-2008, 11:50 PM - Thread Starter
 
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Ok, so apparently my brain isn't functioning at a high level this morning because a lot of what you wrote went right over my head BUT, I too have IC. It was diagnosed about 5 years ago through exploritory laporoscopy. Hardening of the baldder tissue, visible broken blood vessels on the surface of my bladder, etc. Also had to do a HORRIBLY painful cath (bladder capasity and elimination test) exam. My IC had gotten bad enough that wearing jeans had even become too painful as when something pushed on me externally around my bladder area I wanted to keel over and die. I was given medication (but, didn't like the side effects and only took it for about a week) but somehow the IC went away on its own. It returned for a short bout while pregnant with dd and is now flaring up again with my current pregnancy as I figure my growing kiddo is agravating the sensitive bladder tissue.

Curious to know what kind of diet can be making this worse. The specialist who diagnosed me said nothing about any symptoms beign diet related or made worse by diet. Now I'm a bit annoyed at her.
Mainstream medicine doesn't believe in diet and nutrition effecting disease. There's no money in it! It's maddening and naive to say the least. I found my cure on my own but never connected it to food chemicals until now that I brought it all back.

If you are eating a lot of fruits, tomato sauce, pepper, coffee, mint, etc. (look at the food lists in my links) this might aggravate it for you. I've seen all over in IC forums that tomato, coffee and citrus are the number one aggravators... and perhaps that is because of their high salicylate content.

I also truly believe that gut flora has a LOT to do with it based on how I healed. If you do not have enough good bacteria in your gut, you will not digest and process your food properly and possibly this includes food chemicals. For me, using raw milk kefir, high vitamin CLO and taking high cellulase digestive enzymes between meals was an immediate help that after several years of agony was a huge HUGE discovery.

Pg increases yeast... because of the high progesterone levels, so that could be a factor for you.

I did the whole medication thing a long time ago and ditched it quick as well. There's no way I would have been able to function on a barbituate cocktail!! Thank heavens I didn't conceive on that! My worst time was right before ttc, it's a miracle my son actually *was* conceived. And oh, while I'm reliving this, I actually had a pg before DS and didn't know it when I got my first DMSO treatment. You cannot tell me that the miscarriage I had wasn't caused by being pickled with that horrible stuff when the embryo first implanted. My dr. was so condescending when I brought it up.

It makes me really mad how this disease is treated. Don't even get me started on the many rounds of antibx I got from primary care before she even mentioned IC which also killed my gut. In fact, IC didn't exist as a dx until fairly recently, women were told it was all in their heads. Frankly that still exists on many levels. My husband said that often too. :

IC has got to be one of the worst diseases on the planet, both in how painful it is and how poorly you are treated!
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#13 of 33 Old 09-17-2008, 07:17 AM
 
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I have IC.

Some people find relief from treatment for yeast, some find relief from pelvic floor therapy.

At the time I posted in the thread JaneS linked above I was unaware I had a serious milk allergy, which was found about a year later.

I have been off dairy and have had a lessening of symptoms, I stopped taking all of my meds.

Because I felt so much better I had another kid. : I never felt well enough to go through pregnancy before then.

IC is difficult, but I would urge people that if one thing doesn't help, to keep looking.

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#14 of 33 Old 09-17-2008, 02:53 PM
 
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Mainstream medicine doesn't believe in diet and nutrition effecting disease. There's no money in it! It's maddening and naive to say the least. I found my cure on my own but never connected it to food chemicals until now that I brought it all back.

If you are eating a lot of fruits, tomato sauce, pepper, coffee, mint, etc. (look at the food lists in my links) this might aggravate it for you. I've seen all over in IC forums that tomato, coffee and citrus are the number one aggravators... and perhaps that is because of their high salicylate content.

I also truly believe that gut flora has a LOT to do with it based on how I healed. If you do not have enough good bacteria in your gut, you will not digest and process your food properly and possibly this includes food chemicals. For me, using raw milk kefir, high vitamin CLO and taking high cellulase digestive enzymes between meals was an immediate help that after several years of agony was a huge HUGE discovery.

Pg increases yeast... because of the high progesterone levels, so that could be a factor for you.

I did the whole medication thing a long time ago and ditched it quick as well. There's no way I would have been able to function on a barbituate cocktail!! Thank heavens I didn't conceive on that! My worst time was right before ttc, it's a miracle my son actually *was* conceived. And oh, while I'm reliving this, I actually had a pg before DS and didn't know it when I got my first DMSO treatment. You cannot tell me that the miscarriage I had wasn't caused by being pickled with that horrible stuff when the embryo first implanted. My dr. was so condescending when I brought it up.

It makes me really mad how this disease is treated. Don't even get me started on the many rounds of antibx I got from primary care before she even mentioned IC which also killed my gut. In fact, IC didn't exist as a dx until fairly recently, women were told it was all in their heads. Frankly that still exists on many levels. My husband said that often too. :

IC has got to be one of the worst diseases on the planet, both in how painful it is and how poorly you are treated!
my regular doc is pretty good about telling me about diet related solves but the specialist who diagnosed me apparently wasn't. She also diagnosed me with something else rather unplesant that 'm currently dealing with and as the first medical treatment option didn't work I'm now waiting for her to come up with something else. In the mean time I guess I should give up webmd.com and find another source for treatment ideas.

luckily my IC was undoubtedly diagnosed as it was discovered during surgery. They actually gave me full color photos of my bladder (and other organs) afterwards. In the photos of my bladder you can actually see the stretch marks and broken blood vessels covering my bladder. Neat huh?

As far as the list of foods you provided goes. I eat some form of tomato sauce almost every day, I eat a TON of fruit (far beyond the food pyramid rec), put pepper in or on most of my dinners. But no coffee and very little mint. My tomato sauce and fruit consumption is waaaayyyy off the charts though.

Back when I was trying to treat or just deal with the IC the first time around I was TTC. It took me 2 YEARS of effort to concieve dd (she is now almost 3). I thought I'd have the same trouble the next time dh and I tried to concieve so when we decided to have another I thought, "no big rush, this is going to take awhile". Then a funny thing happened, I got pregnanct the 2nd month we were trying. Since I had every test possible done to find out why I wasn't getting pregnant the first time around and it showed nothing beyond persistant ovarian cysts I attributed it to medications used to treat the IC, the surgery I had where they poked my ovaries around as well, and the birth control I had gotten off of just prior to TTC. I haven't had perscription meds since getting pregnant with dd so I figured that had sometihng to do with why it was so easy for me to get pregnant this time around.

Oh, and I also have a bottle of what my mom lovingly calls, "good gut-bug pills" in my fridge. My mom is always trying to push them on me and even get me to give them to my dogs too. Maybe I should think about taking a few... especially with my persistant (about a year) intestinal issues.

thanks for all the info. gives me something to study up on.

~TRACY, wife to loving dh, mommy to dd (10/05), ds(12/08), 3 kitties, & 2 pups.
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#15 of 33 Old 09-18-2008, 12:17 AM
 
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I haven't uncovered exactly why a person cannot metabolize food chemicals but that is my next research project. At first thought, I'm thinking methylation, minerals and gut flora.
yup. Hey, Jane....have you ever thought about taking a biochemistry course? Seems like it would be right up your alley.
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#16 of 33 Old 09-19-2008, 04:35 PM
 
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Jane,

I also suffer from IC. If I ate the pineapple, tomato, or chai, I think my IC would get so bad you would have to commit me to an asylum. It is so interesting that you have been able to eat them in the past, though. I found your thread because I did a search for intersitial cystitis. I had my IC under control for the last 3 years with a combo of holistic tx (alkaline diet, whole foods, IC/low acid diet, pelvic floor physical therapy, suppliments) and one allopathic medicine, Elmiron. I stopped my Elmiron when I got my positive PG test, even though I was advised by many to stay on it.

I was Ok for about 3 weeks, then my IC all came back with full force. It is so disheartening. I wrote a whole other post about it in the Pregnancy forum today. I really don't want to take a medication while pregnant, but I feel that I may not be able to be a martyr and go through this preg with this "soulkilling pain" as you eloquently put it. This is a horrible disease, and I feel a bit PTSD right now, as I also remember the year before I got on Elmiron, and the suffering I was in. Feeling like this could be repeated now during pregnancy had gotten me very depressed. For me, no matter what I tried, it took Elmiron to get me back to a "normal" life. I still had IC sx, but they were very mild. Now, being pregnant, I have a horrible choice to make. Go back on the med or not? Risk suffering or risk fetal exposure to a synthetic drug (even though they say it can't cross the placenta so it is safe, I still have my fears.)

Anyway, I just wanted to say that I am out here too.

Midwife mama bellycast.gif to DD1 bouncy.gif (4.5) and DD2 h20homebirth.gif (1.5)
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#17 of 33 Old 09-20-2008, 08:06 PM - Thread Starter
 
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yup. Hey, Jane....have you ever thought about taking a biochemistry course? Seems like it would be right up your alley.
Yes, but that's not gonna happen anytime soon. I just ordered "Biochemical Individuality"... have you read that? Any recs where I can learn on my own?
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#18 of 33 Old 09-20-2008, 08:17 PM - Thread Starter
 
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Jane,

I also suffer from IC. If I ate the pineapple, tomato, or chai, I think my IC would get so bad you would have to commit me to an asylum. It is so interesting that you have been able to eat them in the past, though. I found your thread because I did a search for intersitial cystitis. I had my IC under control for the last 3 years with a combo of holistic tx (alkaline diet, whole foods, IC/low acid diet, pelvic floor physical therapy, suppliments) and one allopathic medicine, Elmiron. I stopped my Elmiron when I got my positive PG test, even though I was advised by many to stay on it.

I was Ok for about 3 weeks, then my IC all came back with full force. It is so disheartening. I wrote a whole other post about it in the Pregnancy forum today. I really don't want to take a medication while pregnant, but I feel that I may not be able to be a martyr and go through this preg with this "soulkilling pain" as you eloquently put it. This is a horrible disease, and I feel a bit PTSD right now, as I also remember the year before I got on Elmiron, and the suffering I was in. Feeling like this could be repeated now during pregnancy had gotten me very depressed. For me, no matter what I tried, it took Elmiron to get me back to a "normal" life. I still had IC sx, but they were very mild. Now, being pregnant, I have a horrible choice to make. Go back on the med or not? Risk suffering or risk fetal exposure to a synthetic drug (even though they say it can't cross the placenta so it is safe, I still have my fears.)

Anyway, I just wanted to say that I am out here too.


I'm sooo sorry! I had IC when pg and it was the *worst* ever!! Well maybe having it with a colicky baby was the worst. Or a sleep deprived 2 yo... well pretty much anytime was bad. It is so emotionally draining in addition to horrible physical discomfort.

Might be worth it to try the Failsafe Diet and also see if you have some allergies? Like I said in previous thread, it was a number of interventions which improved my digestion and nutrition that helped put it into remission a long time ago. It seems for me the food chemicals eaten to excess can bring it all back. Obviously I still have more work to do. But eating Failsafe for the past week worked very quickly!
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#19 of 33 Old 09-20-2008, 09:05 PM
 
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try The Biochemistry of Human Nutrition It's a good read and deals with all the individual nutrients and pathways. Also, suprisingly, Google images! Google "glutatione pathways" or "taurine metabolism" or even just "methylation" under images and see whatcha get. It may be a bit much, but at the very least it will be helpful as you learn.
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#20 of 33 Old 09-22-2008, 03:48 AM
 
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I have IC too. I was diagnosed at 17 and I am now 30. I was also just diagnosed within the last year with a severe milk allergy, but since being dairy free I've only noticed a small decrease in symptoms. Nothing I have ever tried has helped alleviate my symptoms with much success and I find it interesting that some people say their IC "went into remission" which mine has never ever done in the entire 13 years I have had it.

: Robyn : Increasingly crunchy Mama to Kya (8) , Makena (7) , and Keegan (4) :
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#21 of 33 Old 09-23-2008, 12:14 PM - Thread Starter
 
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Thanks FF

KMK Mama,

Ugh, that's a long time. I can't believe you had 3 LO's while dealing with this!!

Actually I'm sorry for using the "remission" word b/c I dislike that term. It really wasn't what I was trying to get across since I believe that the body does things for a reason, just finding out why is the key. I did specific things which I think improved my body's ability to overcome it, it wasn't a mysterious spontaneously occuring "remission" which I think the current term is used as in mainstream medicine!

Whether I'm slipping back into a mineral deficiency or gut flora issue I'm not sure yet. I also didn't do this experiment scientifically, I didn't eat a "normal" amount of salicylates that did this to me. I overundulged on a whim and not sure exactly what that means! Maybe it will help others. I already think it's helped me understand my DS a bit more so I'm really glad it happened.
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#22 of 33 Old 09-23-2008, 12:22 PM - Thread Starter
 
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Also a mama dealing with this in her child has mentioned that salicylate intolerance also *leads* to food allergies in rat studies. I'm attempting to track down.
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#23 of 33 Old 09-23-2008, 03:01 PM
 
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The Biochemistry of Human Nutrition

This one?

http://www.amazon.com/Biochemistry-H.../dp/0534515436

Mom to DMI & Silly Apple
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#24 of 33 Old 09-23-2008, 05:28 PM
 
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That's it.
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#25 of 33 Old 09-23-2008, 08:05 PM
 
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So I'm not the only one lurking and going hunting for that book?
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#26 of 33 Old 10-25-2008, 04:21 PM - Thread Starter
 
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Failsafe and high amounts of sodium ascorbate and all is well! I'm tolerating average amounts of salicylates just fine. I'm increasing my bone broths as I definitely slipped in this lately (giving all of them to DS!) so maybe that is why I was vulnerable.
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#27 of 33 Old 03-12-2009, 02:18 AM - Thread Starter
 
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Continuing to piece together the IC puzzle...

Raw milk (of which I drank copious amounts of when I cured myself) contains MSM.

MSM is a form of sulfur that is aka DMSO 2. Also invented by Dr. Stanley Jacob of the DMSO Clinic in Oregon. Every IC patient knows what DMSO is... a horrible bladder installation that makes you smell like pickled garlic for 24 hours! But it has a very good success rate.

IC Network Interview with Dr. Stanley Jacob:
http://www.ic-network.com/guestlectu...ranscript.html

Now here is the lightbulb moment relating to previous post on this thread...

The PST pathway...sulfation... that processes salicylates, needs sulfur to work.
http://www.enzymestuff.com/epsomsalts.htm

"The" book on MSM by Dr. Jacob here:
The Miracle of MSM
http://www.newtreatments.org/loadlocal.php?hid=850

MSM or DMSO 2 is an over the counter nutritional supplement that doesn't smell. Dr. Stacey Childs of Univ. of Alabama did a pilot study on IC patients using MSM only as a bladder installation. I have not yet seen oral dosing but considering how safe MSM is (sulfur is one of the top minerals required by the body) all this is making such sense to me.

Any IC sufferers try it?
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#28 of 33 Old 03-12-2009, 02:23 AM - Thread Starter
 
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Originally Posted by JaneS View Post
Failsafe and high amounts of sodium ascorbate and all is well! I'm tolerating average amounts of salicylates just fine. I'm increasing my bone broths as I definitely slipped in this lately (giving all of them to DS!) so maybe that is why I was vulnerable.
Yeah, well, thank you hindsight: guess what other consumption of mine had slipped since DS was dairy free for a while... raw milk.

I'm making up for it with him though, he's currently getting stuffed to the gills with raw milk and eggs. He is sleeping an incredible 11.5 hours/night so something's working right. Hopefully his food chemical intolerances will quickly be resolved!
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#29 of 33 Old 03-12-2009, 11:56 AM
 
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Originally Posted by JaneS View Post
I'm making up for it with him though, he's currently getting stuffed to the gills with raw milk and eggs. He is sleeping an incredible 11.5 hours/night so something's working right. Hopefully his food chemical intolerances will quickly be resolved!
Woo-hoo! Some mercury folks do best on a low-sulfur diet (I wonder if their sulfation pathway is going too fast) but we (me and the kids) seem to do best with a high-sulfur diet, and I've always been grateful that we've never had an issue with eggs; we eat a ton. Though I'm thinking of rotating with them for my husband, I'm suspecting he's become sensitive to them. But yay! on good sleep! :
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#30 of 33 Old 07-25-2009, 02:10 PM
 
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Bumping. Amazing what salicylates can do to a body.


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