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BrendaD
11-19-2004, 04:31 AM
Some of you might remember me; I used to post here almost daily - often on the "vent" board or the "depression" board as I was overcome with feelings of sadness and hopelessness over my fight with ic. That was back when I was going to the bathroom as much as 70 times per day and in all kinds of pain and turmoil over this disease. That was over three years ago and I have been about 90% pain free and symptom free since that time. I still have a fairly small bladder capacity, but it is hugely improved over what it was at its worse. At its worse my capacity was, I dunno, I would say about 20 ml - and sometimes, especially at night, I couldn't even handle a few drops of urine in my bladder as it was soooooo irritating.

That's all in the past now. After much reading and research (and after trying many many different medications and natural treatments) I decided I wanted to try Dr. Stanely Jacob's treatment called DMSO2. However, I live in Canada and the treatment was only approved in one state (I can't remember which one) and pretty much only available through Dr. Jacob's clinic. There was absolutely no way that I could have afforded the trips to Dr. Jacob's clinic. At the time Dr. Jacob was administering DMSO2 through intervenous and instilling in the bladder to treat IC patients. Of the few stories I read about people who were fortunate enough to be able to undergo this treatment, I never even once read of a bad result. That is why I knew that I for sure wanted this specific treatment.

DMSO2 is a derivative of DMSO. However, from what I read at the time on Dr. Jacob's website and even here on the IC network, it sounded like there was much greater success with DMSO2 treatment than with DMSO. The oral form of DMSO2 is known as MSM and is widely available as a supplement. However, in treating IC, the oral form is not anywhere near as effective as bladder instillations and intervenous.

I see that Dr. Jacob has now retired and it appears that some of his work is being carried on by his son who is now a doctor. However, when I look at the Dr. Jacob website I see no mention of DMSO2 and the unique way he was treating IC patients. There is reference to MSM, but that does not cover the story of DMSO2 and how he was using it and his success with ic patients. It's like the story of DMSO2 and the great success he was having with it has disappeared from the face of the earth.

By the way DMSO2 instillations do not have the side effects of DMSO. No garlic smell and no pain while it is in the bladder.

I am sooooo saddened by this. What happened to this extremely promising treatment! I almost wonder if there wasn't pressure on Dr. Jacob from somewhere to give up his pursuit of this particular drug. At the time I remember the issue being that he didn't have enough money to conduct the drug tests that would get this drug approved nationally. As it was already approved in one state it seemed it would only be a matter of time before it was approved on a wider scale.

For the most part I can eat whatever I want, drink lots of fluids, usually just up once or twice a night to go to the bathroom then right back to sleep.

I thought there might be people here who are interested to hear my success story. Take care everyone.

Cheers - BrendaD.

ChrissyH
11-19-2004, 07:04 AM
How wonderful that you are feeling so much better. I have been taking the oral form of MSM for about a year now and I can say that it has saved my life. I was not nearly as severe as you were, but I had daily pain and discomfort. The MSM has helped a lot. Now, after about one year on each MSM and elmiron, I am feeling pretty good. I am still careful about what I eat and drink, but find that I can spurlge a little every once in a while.

classics
11-19-2004, 09:52 AM
Interersting reading. Thanks for sharing. I was working with a naturopathic doctor who is also an acquaintance of mine. She told me to take glucosamine chondroitin and msm. I've been doing this and it might be the reason why I my IC is mild in comparison to others. There really isn't anyway to prove that it is helping me, but I wouldn't want to stop taking it to see if I get worse either. This supplement is also used for joint problems/arthritis, a condition that I've had for years.

liznazz
11-19-2004, 10:07 AM
Chrissy H-- I take MSM also;what is the dosage you are on? Just curious. Thanks, liz

ChrissyH
11-22-2004, 02:03 AM
I take 2 capsules in the morning and another 2 at night. I think each capsule has about 1,000 mg. I've read before that MSM stays in your system for only 12 hours, therefore it is important to take every 12 hours. How much do you take?

Prozan
11-22-2004, 04:00 AM
Could you please tell me what MSM is? And do you know what was in the DSMO2?

Thanks,

Imustpee
11-22-2004, 04:18 AM
What is MSM??????????

classics
11-22-2004, 05:29 AM
Copied and pasted from a website


What Is MSM? Methylsulfonylmethane


Methylsulfonylmethane, or MSM, is a safe and natural assimilate derived from the Southern Louisiana Pine. MSM is organic sulfur--the kind your body can absorb and use. Sulfur is the fourth most plentiful mineral in the body. And, it is found in every cell of every animal and plant. Sulfur is found in food; it is most abundant in eggs and red peppers, but can also be found in significant quantities in grains, legumes, animal proteins, onions, garlic, asparagus, cabbage, brussels sprouts, and broccoli. However, most of the volatile MSM is lost in washing, cooking, or steaming. Modern food processing, packaging and preparation has robbed our food of the sulfur we need.

At the Oregon Health and Sciences University, Dr. Stanley Jacob discovered that heating dimethyl sulfoxide (DMSO), caused it to crystallize, isolating 99.9% of the beneficial compound MSM. MSM is a pure, natural, stable, white, odorless crystalline powder without the unpleasant taste or odor of DMSO. It does not produce intestinal gas or body odor that may occur with other forms of sulfur. MSM is not a drug or medicine, and is unrelated to sulfa drugs, to which some people have an allergy.

Imustpee
11-22-2004, 05:39 AM
Where can you get it and how do you take it?

classics
11-22-2004, 05:48 AM
You can probably find it anywhere they sell supplements/vitamins. Or search for it on the web.

Imustpee
11-22-2004, 05:54 AM
Thanks! I take Elmiron, 4 pills a day....how do you take Msm, and can you take both?

BrendaD
11-23-2004, 03:40 AM
For anyone who is interested in reading more about DMSO and DMSO2 you can take a look at the following website: http://www.dmso.org

This is the website of Dr. Stanely Jacob who pioneered the work on DMSO and DMSO2. DMSO2 is an oxygenated form of DMSO. When the bureaucractic hurdles were too great to get DMSO2 wideley approved, Dr. Jacob went on to produce an oral form of the substance called MSM. MSM can be purchased anywhere where you buy supplements and vitamins.

However, taking MSM orally will not give the same results as being treated with the solution called DMSO2. Dr. Jacob said that for the treatment of ic you need to administer DMSO2 by intravenous and also instilled into the bladder for successful treatment.

DMSO2 is approved for use in the State of Oregon. So for people who could afford to travel to Oregon they would be treated in Dr. Jacob's clinic for a period of time and then when they returned to their home state Dr. Jacob would send the DMSO2 to the patient by mail. Of course this all comes with a high price tag. To give you an idea of what was involved -- I'm not sure how many treatments Dr. Jacob would do intravenously, but there would be a month of daily bladder instillations, then a month of every second day, then a couple of times a week, then once a week, then a minimal maintenance plan.

It looks like Dr. Jacob is now retired. However, the website gives information about Dr. Jacob's son, Dr. Jeffrey Tyler, who has now taken over the research and the practice. I believe that any doctor in Oregon can give this treatment, however, most doctors are not familiar with it.

There is a little bit of information about the DMSO2 treatment at the Dr. Jacob website, but it takes a little bit of digging to find it. Here is the link:
http://www.dmso.org/articles/interstitialcystitis/icu.htm
Basically you go to the main website, then click on "Literature", then click on "Bladder", then click on "Interstitial Cystitis Index", then click on "An Interview with Dr. Stanely Jacob: Discussing DMSO", then go about half way down the page to the heading "DMSO2".

Peace - BrendaD

LeahT
12-17-2004, 05:25 AM
This is amazing helpful information. I'm glad that you shared your success. Maybe this will be me in a short period of time! I know that I printed everything off of that website to bring to my urologist next week to get his thoughts on it. Thx. Leah in Minnesota.

rjyoon
12-17-2004, 07:28 AM
I tried MSM in desparation before resorting to Interstim. Unfortunately, it made absolutely no difference at all.

naturalhealth
10-30-2008, 03:55 AM
I've heard many wonderful accounts of how well. MSM has worked for many people. I think a combination Glucosamine, Chondroitin, MSM supplement works best for many people. I say it's worth a shot. It definitely cannot hurt to try it, as it's a natural supplement. And if it helps, then great.

purpleviolet
11-18-2008, 02:16 PM
I found a naturopath who does DMSO by IV but it is very expensive so I have not done it. He checks your blood work before doing. He treats AIDS patients so he knows a lot about being careful. This guy is in Seattle area so anyone interested can PM me. PV

purpleviolet
11-21-2008, 03:56 PM
I'm cautious about making any claims, but I think when I apply dmso gel (70%) over the bladder and around underneath (but not directly on mucous membranes - I use Dr. Jacobs MSM gel for that), I think it relieves some of the pain for a few hours. I have done this a few times and I think there is some relief. Have to test it more. I do take MSM and glucosamine, but I think that the MSM I take is way to low a dose. I see Jacobs Lab has some liquid you drink in a higher dose. I had 2 series of 6 dmso cocktail instillations a long time ago and they did not help then. PV