This Is MS Multiple Sclerosis Community: Knowledge & Support

As some of you know, my wife used the alternative drug Prokarin for 7 years when she was still alive. (passed away 2007) She was one of the fortunate ones who beneffited from its usage with her SPMS. This drug, which only had one clinical trial done due to lack of funding, received a lot of trashing from the established MS community. Nobody would believe that histamine, Prokarin's main ingredient, had anything to do with MS.

Some of you may find this article interesting in view of what happened some 18 years ago when Prokarin first arrived on the scene. There is ongoing research with histamine taking place these days. Whether it leads to anything will be interesting.

http://www.sciencedaily.com/releases/20 ... 133317.htm

Harry

Hi,
It makes me think to this publication of Dr Jonez in 1953.
The Allergic aspects of MS.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1521914/pdf/califmed00209-0035.pdf
For me, it already explained a lot.

Dr. Jonez passed away suddenly not too long after that article was published. The sad part was his research and ideas came to an abrupt halt and nobody continued it despite thousands of patients at his MS clinic obtaining symptom relief after getting the treatment. I believe that some 80% of the patients experienced some kind of benefit.

Elaine Delack, the current inventor of Prokarin, didn't know anything about Jonez's work until she applied for a utility patent for Prokarin back in 1999. That's when she learned about him and his research. Just like Jonez got trashed by the MS people back then, Elaine suffered the same kind of ridicule from the esteemed MS neuros of the day. One of the biggest opponents for her was the NMSS in New York city. They were brutal.

You have to wonder with the recent discoveries of ideas so very different from the standard auto immune theory, that there must be something to them as they relate to each other. I guess time will tell.

Harry

HarryZ

Sad to hear about your wife's death. Please elaborate the positive aspects of Prokarin on your wife's health wrt to MS and whether MS was the ultimate cause of her death or not. Sorry for taking you back into those bad days.

Taurus,

Prokarin had these effects on my wife...

- fatigue levels improved dramatically
- was able to tolerate heat a lot better
- appetite improved
- walking ability improved, albeit slowly
-cognative fog went away

Marg never had any side effects from Prokarin at all and she was in the 1/3 user group that experienced multiple symptom relief. Some patients get one or two symptoms relieved while some others get no benefit at all. The one good thing about the drug is that you know within a month or two if it's going to help you in any way. There aren't side effects so the worst that can happen to you is absolutely nothing.

The MS appeared to stabilize for several months but in March of 2001, she suffered a freak accident when she failed to lock the brake on her roller walker when she got out of bed one day. She fell awkwardly and broke her right leg in 3 places with spiral, stress fractures. The doc told her she would have been better off falling flat on her face. That event seemed to push her MS over the edge and she was never the same although she did manage to walk short distances after a lot of physio therapy.

Marg eventually came down with pancreatitis in Sept 2007 and that caused her death. Although it was the MS for many years which ate away at her overall health, the cause of death was listed as pancreatitis! No wonder they say most don't die from MS.

Marg never tried any of the "approved" MS drugs. Her neuros told her that they would be a waste of time since they were very disappointed in the overall results they were getting compared to what the drug companies told them to expect.

I find it ironic that I now read a scientific article stating how they think histamine can have an effect on treating MS when 18 years ago, they told Elaine Delack, the inventor of Prokarin, that she was a quack and not to be trusted. Then again, they've already said the same thing about Dr. Zamboni and CCSVI so I guess there is some consistency in the established MS world.

Harry

Harry
Thank you for your detailed response. I pray to God to shower blessings on your wife and give u courage to bear the loss. Thanks once again for helping all pwMS.

The paper i linked above suggest that MS is an allergic reaction (in majority to food) that leads to blood clotting and which happens in the brain and that’s why histamine works for MS. But avoiding food that we are not made to eat, can do the job.
I don’t believe in CCSVI even if I used to and have been treated for it. If blood flow is reduced in the brain, it can appears like a problem when imaging the major veins which have a very variable anatomy.

This is the evolution of 22 MRI scans done by one patient in one year. I don’t think that lesions in legs due to major leg vein problem are so dissiminated and comes and goes that much.
http://www.med.harvard.edu/AANLIB/cases ... 2/020.html

There have been many reports from MS patients who control their symptoms with diet. Same thing for those who use Prokarin. But we also know that these methods don't work for others.

You can add the approved medications, CCSVI and other treatments to this list which has made it next to impossible to figure out this disease so far. No wonder why after 70 years of research there still isn't a known and proved cause or definitive treatment for the disease.

The good news is that the scientists are looking in many different areas these days as opposed to just the immune system.

Harry

Maybe they have good reasons to try to find out what is wrong with the immune system.

I had MS for 12 years and have had about 20 relapses, 1.5 year of avonex and 2 months of copaxone and that’s it for the drugs. I have experimented a lot on my self. In 2009 I wanted vitamine D but in a natural way. And I had this stupid idea that drinking cow milk was natural and contains plenty of vitamine D. I started to drink 1L per day, much more than my usual. And I had 3 relapses in 3 months, much more than my average…

I always had rhinitis during springtime and I always loved cats but I couldn’t approach them because they made me cry, eye swelling and sneezing.
I stopped diary, and limited gluten, more than 1 year ago. I can’t say if it has an effect on MS because it’s too early to say. Old symptoms don’t go away because tissues are scared but I feel stronger, much less fatigued, more endurance, had no relapses, and I realized after a while something dramatic that I didn’t expect. My allergies was gone.
Last year I had no problem during springtime and I can now stick my head on a cat and nothing happens. I can play with them and when they scratch my hands, there is no oedema forming around the scratch like before.

My dentist who have 30 years of practice and who have a passion for MS for some reason, says that he can see the immune problem in mouth of patients with MS. And he think as I do and many others that everything comes from the gut.

Perhaps there isn't anything wrong with the immune system when it comes to MS. One's immune system reacts to inflammation, viruses, bacteria etc and tries to neutralize the problem. The key is trying to find out what is causing the problem and triggering one's immune system....in other words don't keep on treating the symptoms but find and treat the cause. Easier said than done!

Of course. Avoid allergens is better than taking histamine.

There is often confusion when trying to understand how histamine helps MS symptoms. The h1 histamine molecule (the one that causes allergic reactions in people) is not the same as the h2 molecule which gets produced in a controlled metabolism of histamine in the body. The process is quite complicated but here is a link which helps explain it at a professional health care level.

http://edmsllc.com/research_professional.htm

Of course, like you said, if one can avoid all allergens, we would be a healthy society. But that just doesn't happen.

IF is only two letters, but a big word.

I have been to an allergy specialist, and had him stick patches down my back for a couple days, and he couldn't find any allergies to "common" groups of allergens. So if I am allergic to anything, its beyond me? And Prokarin didn't work for me, but the historic treatment using injected histamine does still interest me.

Cure,

If Prokarin did not work for you then I don't think I would waste my time with injected histamine as you will likely get the same non result.

Jonez had initial problems with his IV histamine because histamine breaks down in the body very quickly if not controlled. I believe he added a peanut oil derivative to the IV in order to slow down the metabolism of the histamine. Today's Prokarin uses a small amount of caffeine to accomplish this and one no longer needs to apply the histamine cream on the skin and cover it with a patch. The drug is included in a new transdermal patch which releases the histamine slowly into the system. Far easier to use, no refrigeration is needed and one can take the patch off to shower, swin etc and then put it back on again.

Harry