Interstitial cystitis and ms(do you have both?I do!

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Interstitial cystitis and ms(do you have both?I do!

Postby tricia2577131 » Tue Mar 26, 2013 7:25 am

I saw on this site somewhere: a person asking if anyone had both interstitial cystitis and ms.This person wanted to know about pain relief.I have had interstital cystitis for 20 years,and possibly ms for just as long(only officially dx 2 years ago)Yes.There are ways to releive the pain.Have you had any medicine instillations?(DMSO,or cystistat?Have you heard of a medication called elmiron?)These have been known to help.Elmiron is one of the newest out there that I know of(and it's oral!!!!no catheters!!!)Also,if you are having a painful flare-up try this.It REALLY worked for me:Take 1 Tbs baking soda in 1-2 cups of water and drink it(tastes aweful,but alkalinezes your urine reducing pain and burning)two hours later take 4 calcium carbonate tabs ie tums or rolaids.I know this sounds like some dumb or crazy thing to do,but I got this information from a lady at the interstitial cystitis association of Canada...and it really works for me.Also,apply heat(may aggravate ms symtoms so avoid if it is too bothersome.)Use a heating pad(this is gonna be candid...but trust me does this work!)pLACE THE HEATING PAD RIGHT ON YOUR PRIVATE PARTS AND LET THE HEAT RADIATE UP!This will send relief to where the pain is coming from(not your abdomen,but the bladder and urethra!I hope that this is of some help.I am also right with you in wondering if there is some connection to ms and ic because they are both auto immune diseases,and many people with ms have bladder issues.I hope more research will go into this.I hope you are finding yourself well today,and I hope that I can find you.I have searched about a 1/4 of the forum topics looking for yours again,but I will have to look some more later.
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Re: Interstitial cystitis and ms(do you have both?I do!

Postby euphoniaa » Tue Mar 26, 2013 9:06 am

tricia2577131 wrote:I saw on this site somewhere: a person asking if anyone had both interstitial cystitis and ms....

I have searched about a 1/4 of the forum topics looking for yours again,but I will have to look some more later.

Maybe this is the thread you're looking for:

Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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Re: Interstitial cystitis and ms(do you have both?I do!

Postby Mattysmum » Tue Apr 23, 2013 9:21 am

Hi, can I ask what does the calcium carbonate do? Just found your post, I have had MS for 15 years, and now have IC. I also find bicarbonate of soda works wonders! Not tried it with the calcium carbonate tho. Have you read a book by Larrian Gillespie - you don't have to live with cystitis? Good info in there, I believe my IC started with an MS flare resulting in retention in my bladder. 3 or 4 UTIs later (all bacterial) and antibiotics worked. I then found I was having symptoms of UTI but no bacteria and antibiotics stopped working. Apparently UTIs can damage the bladder wall, leading to IC. so I think my temporary bladder retention caused my IC. would love to hear back from you regarding the calcium carbonate. Also do you think cranberry juice helps as it does with normal cystitis or does it make it worse as its acidic?? All very confusing, so many differing opinions out there.
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Re: Interstitial cystitis and ms(do you have both?I do!

Postby jimmylegs » Tue Apr 23, 2013 10:09 am

of course I am going to chime in about zinc here, since it is low in ms patients, contributes to membrane integrity/impermeability. combats infection (bacterial AND viral), and I've been reading about interstitial cystitis and associated defects in glycosaminoglycans, which happens to be impaired in zinc deficiency also...

Influence of zinc on growth, somatomedin, and glycosaminoglycan metabolism in rats (1987)
"35SO4 uptake by glycosaminoglycans (GAG) was significantly less in ZD compared to either control ad libitum or PF rats. Xylosyltransferase activity was decreased significantly below PF and control by ZD, suggesting depressed enzyme activity and/or decreased GAG acceptor sites."

The role of the urinary epithelium in the pathogenesis of interstitial cystitis/prostatitis/urethritis. (2007)
The biologic activity of mucus that imparts this barrier function is generated by the highly anionic polysaccharide components (eg, glycosaminoglycans), which are extremely hydrophilic and trap water at the outer layer of the umbrella cell. This trapped water forms a barrier at the critical interface between urine and the bladder. The result is a highly impermeable urothelium that serves as a key protective barrier for the bladder interstitium. In interstitial cystitis (IC), disruption of the urothelial barrier may initiate a cascade of events in the bladder, leading to symptoms and disease. Specifically, epithelial dysfunction leads to the migration of urinary solutes, in particular, potassium, that depolarize nerves and muscles and cause tissue injury. Exogenous heparinoids can restore the barrier function of the urothelium and thus successfully treat patients with IC.

(fyi, some Wikipedia definitions... heparinoids would be "Heparin derivatives. The term has also been used more loosely to include naturally occurring and synthetic highly-sulphated polysaccharides of similar structure. Heparinoid preparations have been used for a wide range of applications" and heparin would be a glycosaminoglycan: "Based on core disaccharide structures, GAGS are classified into four groups.[5] Heparin/heparan sulfate (HSGAGs) and chondroitin/dermatan sulfate (CSGAGs) ..."

suggests that zinc may be therapeutic for IC.
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Re: Interstitial cystitis and ms(do you have both?I do!

Postby Mattysmum » Tue Apr 23, 2013 10:41 am

Thanks for info. When I first got diagnosed I went on the Best Bet Diet and took loads of supplements in high volumes. I didn't notice a difference in my MS and so stopped taking them after about two years. I would be interested in having another go at just zinc if you think it will help. What else do I have to take to make sure everything stays in equilibrium? I ask because when I was taking the supplements I had a pregnancy and was advised to cut out the fat stored vitamins, but I continued with everything else. My little boy was born with a cleft lip and palate, and I'm convinced as this condition is so much more prevalent in developing countries, that it was caused by a nutritional imbalance, more than likely from the supplements. Devastatingly my little boy then died at 4 of meningitis. I know it sounds silly but I am just so sure it was because of the supplements I took in pregnancy. Anyway, I'm not planning another pregnancy! I just want to make sure if I take the zinc I also take whatever is needed with it. Would you know? Or shall I just take a good multivitamin with zinc?
Thanks a lot
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Re: Interstitial cystitis and ms(do you have both?I do!

Postby jimmylegs » Tue Apr 23, 2013 11:32 am

hi mm, so sorry to hear about your little boy :( can you tell me without investing too much time, a little about your original regimen over 2 yr period? and specifically how the regimen was revised during pregnancy?

I will give whatever help I can. in the meantime if you are interested this is how I approach nutrient therapy in ms

the short story is do things VERY CAREFULLY and scientifically, with a lot of attention paid to proper balancing. I too learned the hard way about not balancing nutrient supplements, but my tale of woe is nowhere near so sad as yours :(

now for the long story.. I had a quick search to investigate nutritional factors related to cleft palate and meningitis.

[Low zinc and high copper levels in mothers of children with isolated cleft lip and palate].
Changes in orofacial development have been reported in offspring of animals treated with copper injections or low zinc diet during pregnancy. The aim of our study was to determine serum levels of zinc and copper in mothers of children with non-syndromic orofacial clefts and in women who gave birth to healthy children. Ninety six healthy women participated in the study: 35 mothers of children with cleft lip and cleft palate (CLP), 30 mothers of children with cleft palate (CP) and 31 control mothers of healthy children. Serum zinc and copper concentrations were determined by the use of inductively coupled plasma-mass spectrometry (ICP-MS).
RESULTS: Between CLP and controls there were significant differences in mean zinc levels (511 +/- 121 microg/L vs 572 +/- 76 microg/L, p = 0.012) and copper levels (991 +/- 388 microg/L vs 810 +/- 201 microg/L, p = 0.02). In CP mean serum zinc and copper levels were 540 +/- 130 microg/L and 846 +/- 291 microg/L. The ratio of serum zinc to copper levels was significantly lower in CLP comparing to CP and controls (0.57 +/- 0.19 vs 0.67 +/- 0.18 and 0.74 +/- 0.19, p = 0.003)
CONCLUSION: Our results suggest that trace elements may play a role in facial clefting in humans.

just to make those results a little more readable:

cleft lip and palate serum zinc = 51.1 µg/dL ( 7.8 µmol/L )
cleft palate serum zinc .......... = 54.0 µg/dL ( 8.3 µmol/L )
controls serum zinc .............. = 57.2 µg/dL ( 8.8 µmol/L )

cleft lip and palate serum copper = 99.1 µg/dL ( 15.6 µmol/L )
cleft palate serum copper ..........= 84.6 µg/dL ( 13.3 µmol/L )
controls serum copper ..............= 81.0 µg/dL ( 12.7 µmol/L )

cleft lip and palate zinc:copper ratio = 0.57
cleft palate zinc:copper ratio ..........= 0.67
controls zinc:copper ratio ...............= 0.74

Serum zinc and copper levels in children with meningococcal disease
Mean serum zinc and copper levels were depressed in 94 children aged 1 month to 9 years who presented with meningococcal disease. The mean serum zinc level was 44 μg/dl (reference value 78 μg/dl, SD 18) and the mean serum copper level 157 μg/dl (reference value 159 μg/dl, SD 27). Nineteen patients had serum zinc levels less than 25 μg/dl and ten patients had serum copper levels less than 101 μg/dl.

MD serum zinc.................= 44 μg/dl ( 6.7 umol/L )
MD serum copper.............= 157 μg/dl ( 24.7 umol/L )
MD zinc copper ratio.........= 0.28

overall the inverse relationship between serum zinc and copper is clear to see. also when zinc is higher and copper lower (within limits) you're better off.

it's known that zinc is low in ms patients and also that levels are depleted during pregnancy. (oh and by the way, every single mom in that orofacial study, even the ones who had normal babies, were zinc deficient by any standard. the highest zinc result for any mom in that study was 9.9 umol/L).

truly healthy controls have much higher levels ie serum zinc ~18-19 umol/L zinc, serum copper ~17 umol/L copper, and a zinc to copper ratio up towards 1.1.

if you can get a serum zinc test that would be an extremely useful first step, to help get an idea how far you have to go.

again, so very sad to hear about your little one :(
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Re: Interstitial cystitis and ms(do you have both?I do!

Postby jimmylegs » Wed Apr 24, 2013 12:24 pm

ah yes, not to mention zinc deficiency creates increased susceptibility to infections of various kinds.. like UTIs etc, but not forgetting c. pneumoniae

this study notes decreased incidence of infection rates, via zinc intervention (see table III in particular)

Effect of Zinc Supplementation on Incidence of Infections and Hospital Admissions in Sickle Cell Disease (SCD)
Mycoplasma and Chlamydia pneumoniae cause the most common infections associated with the acute chest syndrome [20] in SCD patients.
TABLE III. Effect of Zinc Supplementation on the Incidence of Infections
Table III shows that with time, there was a significant decrease in the incidence of documented and clinical infections in Grs A and B. ... changes observed with time in the incidence of documented infections were related to zinc supplementation in both Grs A and B.
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