This Is MS Multiple Sclerosis Community: Knowledge & Support

Deb.

I tried responding to your message last night but after spending a fair amount of time doing so, I got a "Internet Explorer" fatal error and lost the entire post that I had made. Arghhhh....I then did the next best thing....went to bed )))




Interesting story...when Elaine approached several pharmaceutical companies and asked if they were interested in working with Prokarin, one of the first questions they asked was not if it would ever work but "how much did you plan on charging for it?" When she told them somewhere around $ 250.00 a month they immediately made a "180" while mumbling that amount wasn't anywhere close to what they would even begin to contemplate.



I can only say that I have spoken to Elaine on a number of occasions and she is very well aware that Prokarin is for symptom treatment. At the same time, though, she has been using Prokarin for 7 years now and she is symptom free and works a very long day. The FDA also keeps tabs on her website and if she says anything that isn't proper, they let her know.



The NMSS states that they do not endorse or recommend any of the listed treatments on their website. Getting anything listed is difficult. One thing that really irritated Elaine is that when she met with them on one occasion, it was suggested that more backing might come to Prokarin if her company had some "benefits" to give to the NMSS. Of course, the inference can never be proven but when they said that to her, she knew that she was dealing with the wrong people.



The main ingredients of Prokarin, histamine diphosphate and caffeine citrate, both have been FDA approved for decades. Prokarin is officially listed as a compounded drug and can be used "off label" because of this. The FDA is very aware of it and have spoken to Elaine about it. In fact, histamine treatment in an IV format, was given to thousands of MS patients back in the late 40's and early 50's by Dr. Jonez...with a great deal of success BTW. There were no adverse affects to the thousands of patients that he treated. Unfortunately, he died suddenly in 1952 and all of his research and work with MS came to an abrupt halt, never more to be resurrected.

As for getting orphan drug status....that is very difficult to do. You have to prove that the drug that you want the status for is better than the orphan drug already in existence, which would Betaseron and Avonex, both of which have the status. And that costs millions to do.



Whatever works!

I doubt that Prokarin will make any great strides unless more docs prescribe it. And unless someone comes forth with a few million dollars to do some trials, that isn't likely to happen. For the time being, there are a few thousand people who are using it with a great deal of success. I can't imagine what my wife Marg's life would be without it!


I hope your weekend has gone great. Take care.

Harry[/quote]

Willy,



I am going to respectfully disagree with you on not blaming the manufacturers or some doctors on the patients' expectations.

One only has to look at the slick videos that the CRAB drug makers provide to the MS patients. They give the impression that if you take their drugs, you will be able to climb mountains and ride mountain bikes. They certainly don't mention any of negative possibilities that may happen to you.

Doctors often don't tell their patients a lot about the CRAB drug that they are going to prescribe. Many may, like in your case, but I am constantly reading about patients who claim on the net that they weren't told much if anything about the cons of these drugs.

Ironically, I was reading an alternative medicine MS forum last night and read a thread about a lady who had just been diagnosed with MS. Her neurologist was going to put her on Betaseron and she was asking for comments about the drug from any of the readers. Here's what was written and I quote each posting:

"Got it (Betaseron) coming next week? My first MS med other than steroids, ever...... Any experiences or info would be helpful?? Thanks"
Signed: EWEBB

"My wife was on betaserone for a year. It had terrible side effects and she dreaded it. We would never get involved with it again. "
Signed: Ontario

"I'm sorry I ever tried it. I believe it made me worse off. I had night sweats, chills, trouble sleeping, and an outbreak of shingles shortly after starting it. I have felt like I'm "freezing" from my waist down and cannot walk at all without the help of a walker and have to use a wheelchair at times now."
Signed: Marjorie

"Betaseron took Polly downhill faster than any other period in her MS ordeal. "
Signed: GS

"I had bad experience with Betaseron, but stuck with it because of neuro's advice and family's fears. Wrong thing to have done. Can't stess enough, that if you decide to try this, listen to what your body is telling you and follow what it is telling you. Don't listen to anyone else but your body. I'm on LDN now and wish I had known about it earlier. My best to you and your decision."
Signed: Joan

"First, let me explain that the interferons can either make you better, do nothing or make you worse. In my daughter's (MelissaGA) case it was the latter. She was on Betaseron for 18 months and the last year on it she had exacerbations every other month, each one leaving her a little more disabled. When she finally told her Neuro she wanted off, he reluctantly agreed and said that she must be one of the ones it makes worse. We were never told that before. She's been off Betaseron for over 4 years now. She's been on LDN and Prokarin since quitting Betaseron. She went over 3 years without an attack, but had a mild one last summer and a bad one this summer, both brought on by severe stress and overwork. She has a bad habit sometimes of forgetting she has MS. I guess my advice is if you go on Betaseron, be your own healthcare advocate and listen to your body. It will tell you what is right or wrong for it. My daughter is very angry that her neuro kept her on Betaseron so long when she obviously was getting much worse on it. She says she wouldn't have had her residual disability if she had stopped it sooner. "
Signed Nancy


So far there hasn't been one person that has responded positively to the original question. Of course there are likely just as many people out there who have had much better results with Betaseron but the one comment from Nancy about the doctor not telling them all the possibilities I believe happens far too often with the CRABs. About 6 months ago I read a message on the MS Facts MS forum (Canadian site sponsored and monitored by Teva). A young lady was complaining that she had been phoned by a neurologist from the St. Michael's MS Clinic in Toronto and told that her tests revealed that she had MS, he was going to put her on Avonex and to come back and see him in 18 months!!! And then he hung up!!

I've also attended many MS research updates, sponsored by the CRAB drug makers of course, and not once did any of the docs spend any time at all telling the audience about the possible downside of these drugs.

You were very fortunate that your doc told you that taking these drugs was a "crapshoot". You then made your decision based on knowing this.....many other MS patients don't have that opportunity. I don't have any qualms about a MS patient deciding to take a CRAB drug if they have been given all the info about them and then make a personal decision to do so. But I continue to read that this information simply isn't given to them in many cases.



I don't think I would call Marg's case of MS mild. She has SPMS which got to that stage in 1995. She had dibilitating fatigue, burning feet, tingling feet, horrible digestion problems, huge sensitivity to the heat, lousy sleep habits and legs that were turning to jello. Since starting on Prokarin in 2001, most of these symptoms have been held in check and at least she has some quality of life at this time. And most important, her MS has not progressed in the past 4 years.

And even though the CRAB drug companies are carefully regulated, a lot gets through the loopholes.

Harry

Hi, Harry!

I can't tell you how great it is to hear that your wife is doing well on her chosen therapy. That's all any of us can hope and wish for these days, and it's wonderful to hear the "success" stories.

This has been a terrific discussion and as always, leaves me with many new and interesting pieces of information to ponder and consider. (As you can probably tell, I'm something of an "information junkie". In my mind, there's no such thing as too much knowledge.)

And thank you for your thoughtful wishes for my weekend. It WAS very nice, thank you! I hope you and your wife (and family) experienced the same! (Along with everyone else here on the Board!)

You know me, if something new (comment, etc.) hits me, I'll be baaaaaack, as Arnold says!

Deb

Sounds to me like you're quoting from a website that's pushing Prokarin and/or LDN. In any case, testimonials should be taken with a grain of salt.


If that's true, it's a rotten way to practice medicine. It is certainly not what happened to me. My doctors gave me the news in person. The one who recommended Avonex told me he wouldn't write the 'script unless I reviewed the information and videos for all four drugs. He made it clear in no uncertain terms that it wouldn't make me better, but rather might keep me from getting worse as fast as I otherwise would.


It's hard to know what's in people's heads but I don't think the ABCRs are marketed in a deceptive matter, notwithstanding the reprimand given to Biogen a couple years ago about their mischaracterization of patient satisfaction data. If people think there's a guarantee of good results or a lack of side effects, then they've either been fooled or more likely have fooled themselves. People have a responsibility to ask some questions.


When you say "held in check," do you mean eliminated or stabilized? BTW, I'm sorry to hear that your wife is having these difficulties and am glad that she seems to be stabilized since using the substances you've mentioned. I am all in favor of people trying alternatives when the standard therapies don't work. Someday I might be one of those people.

I take ritalin for fatigue and it costs about $250 a month. It's FDA-approved and the drug companies apparently make enough on it that they are willing to sell it for that amount.


Maybe she has relapsing-remitting MS and her fatigue spontaneously left. I had alternating periods of fatigue for a long time.


You are broadly hinting that the NMSS engaged in extortion. Please justify this allegation. Who at the NMSS said this to her? When? Did that person specify a quid-pro-quo? Surely you aren't going to shoot from behind rocks, right Harry?


Where was this research published? Was it ever peer reviewed?

Willy,



I think you missed the point here....the drug companies first interest was how much they were going to get and not if the drug was going to work or not.



You don't go 7 years, symptom free with R/R after having the problems that she did and say that the MS has spontaneiously left. Good grief, Willy, you are grasping at straws here in trying to rationalize your theory about what happened.



Reingold, who else?!! It was at a face to face meeting back in 2002. Like I said, it was very smoothly done and don't think for one minute that they haven't done that before. I know you won't believe the NMSS would be capable of doing such a thing.



Jonez wrote a book about his work and there were a number of papers published back at that time. He, of course, was at odds with some of the neurologists back then. I think if you go to your local library, they may have his book. His name was Dr. Hinton Jonez.

Harry

What "benefits" did Rheingold allegedly specify? Was there anyone else at the meeting?


I'll look for it.

Willy,



An answer to that question would have required me to be present at the meeting....which of course, I was not. There were other board members of the NMSS at the meeting. You don't think that Reingold would be foolish enough to come right out and clearly spell out what his intentions may have been? Let's just say that in the general context of the conversation that was taking place, it wasn't difficult to perceive what he was inferring. Of course, it could always be said that he meant something totally different than how it was said at the time.....right!!

Getting back to Dr. Jonez's work....a couple of years ago, on an MS forum site, there was a "Dr. Steve" who was a PhD educated person who had a relative that had MS. He posted several, very detailed messages about Dr. Jonez's work but I'm not sure where he obtained the detailed information. I'll try and find it but somehow doubt it would be kept for that length of time.

You also asked earlier what I meant by Marg's MS symptoms being "held in check." Trying to be specific I can say that her horrible fatigue has been reduced by about 90% and only when she overdoes it in the course of day, will she pay the price for doing that. The tingling and burning in her feet have been reduced by about 90%. The terrible digestion problems have more or less been eliminated and that took several months to happen. The sensitivity to the heat was reduced by about 80%.
Sleeping has become much better. One of the biggest differences is Marg's cognitive abilities. Very often and depending upon the severity of the MS, cognitive function is a problem with MS patients. We see it all the time many of our MS friends. Since being on Prokarin, Marg's cognitive level has improved substantially and is noticed by those who have been around her for quite some time. It's an "alertness" level that effects speech and thinking and when an MS patient suffers from this, it is quite noticeable.

On top of all of these possible symptoms, Marg fell and broke her leg badly 3 years ago. On top of that she suffered from bilateral sciatica from the lack of movement and long periods of time in a wheel-chair while the leg healed. The pain from that was excruciating. Even after all the physiotherapy, the leg spasms are still quite severe and every "expert" we have talked to states the problem stems from a lack of movement as opposed to the MS. They also say that the MS certainly doesn't help the situation and only complicates any kind of rehab that is tried.

Talk about a catch 22....the spasms won't go away unless the legs get more work but she can't do the work required because of the inability to walk due to the MS and the severe spasms.

Harry

First things first. Harry, your wife's story is impressive. I'm glad she's doing this well, and I wish her all the best for the future. I can understand why you're so high on histamines and LDN. I guess the only comment I can offer is that the positive and factual approach works better than anything else, and that any claims for broad effectiveness need to be made with care. That's only my viewpoint. I'm just one guy with MS who responds in the way I do.

I'm playing for keeps. It's not a bandwagon or a political debate for me. I don't do anything with my MS without very careful thought.

Someone really ought to reprint Jonez's work, if copyright laws permit. The book isn't available on Amazon and it ought to be. Or maybe it and the rest of his stuff ought to be available free on-line somewhere.

As for the NMSS stuff, I have a high standard of proof when it comes to allegations of wrongdoing. You've interpreted this as my unwillingness to believe that the NMSS or its top people could behave unethically or criminally. This is not so. What you're seeing from me is an underlying sense of fair play at work. Prior to my disability I was a professional, and was once threatened with the ruin of my reputation by someone who didn't like my opinion. I stood my ground, but this incident made me extremely sensitive to the value and importance of a reputation. That is why I keep asking you for specifics.

I don't know this Rheingold one way or the other, but in my mind he is innocent until proven otherwise. If he is imperious, unpleasant, arrogant or otherwise difficult to deal with, that's not a professional or ethical offense. If that makes you regard me as somehow complicit, all I can really do is try to tell you that it's not the case and leave the rest up to you. Funny thing is, once my standard of proof has been met then I'm like a pit bull attached to someone's leg. Maybe that's another reason why I try to check it out from every angle before really baring my teeth, which are sharp and connected to a set of strong jaws.

A few links with references to the work of..Dr. Hinton Jonez

http://goodshape.net/Books.html

http://www.goodshape.net/

http://www.findarticles.com/p/articles/ ... _111271859

http://home.centurytel.net/mcduff/ms.htm

Willy,



Yes, she is a real fighter and I believe that many would have given up if they had to go through what she has over the years.

For Marg, Prokarin has worked wonders. For others, it has done nothing...I guess more along the lines of most MS medications when it comes to the "crapshoot" you speak about. A very accurate description. I'm not sure yet just what the LDN is doing for Marg. When you take two different meds, it's hard to determine which one is doing most of the work although in her case, I believe it's the Prokarin up to now. At least the LDN isn't doing her any harm....that we know of!



Understood.



I've found a 30 page document that I printed off the new a couple of years ago about his work and have asked the particular website if they archive their work for any length of time. The problem is copying these 30 pages and making them generally available. I'm going to go through the document this evening and refresh my memory.



That I can understand and don't take exception to you asking for the level of proof that you have. The problem I have is that some of the info is confidential, as I explained earlier, and that leaves me in the frustrating position of making general comments that are publicly known and not giving the nitty gritty detail on other matters.

If the info that I was told about the NMSS had come from only one individual then I would treat it accordingly. But it has come from more than one source and some of it has been blistering! I guess when there is a lot of money at issue as well as an entire organization, people will do what they have to in order to protect it.



Reingold is but one person in the NMSS but he stears the ship and others take direction from him. I am not implying that Reingold or the NMSS have committed criminal acts but only that they are not the squeaky clean organization that they have been made out to be. I suppose it is the manner in how they deal with ideas and differences from their own ideas that irritates me more than anything. It is one thing to express caution to the wind but another to take the offensive stance that they have on some issues...especially without making the time or effort to really investigate the matter.

Anyway, thanks for your clarification of your ideas...it is appreciated.

Harry

Harry, I am skeptical of LDN. It strikes me as a kind of homeopathic remedy and/or an anti-depressant masquerading as something more. I am further put off by the sweeping and unsubstantiated claims made for it. But it's cheap and it doesn't hurt, so I'm fine with it as long as someone isn't somehow gulled into replacing their ABCR with it.

I'm genuinely intrigued by two other things. One is the histamines, and particularly this work by Jonez. I'm not endorsing anything because I haven't read it. But you've certainly got my attention. Seems to me that if his stuff is out of print that someone ought to make it all available on a website including a copy of his book. Maybe this site could do it?

I am also interested in Vitamin D. It would seem that MS rates are correlated to Viking migration patterns (genetics, with Scandinavians and their ancesors having the highest rates) plus either inverse temperature or inverse winter sunlight levels. Hard to disentangle the last two factors, but in the U.S. the highest MS rates would appear to be in cloudy areas. The Vitamin D hypothesis has gotten my attention. It would be good if this site had a repository of that research, too.

As for the NMSS, one more thing occurs to me. I think that, to some degree, people might overstate its importance. Yeah, I know they are influential. But when I see this or that hypothesis being advanced on the strength of an argument that says the NMSS has ignored or suppressed it, my radar flashes a warning signal. Insurgencies are political, and I don't do politics with my MS. It's a free country; if something works and the NMSS doesn't like it, the answer is to go around them. Time will tell.

Willy,



I must say that when I first read about LDN about 18 months ago, I also was skeptical. But the more I read about it and started to ask some of my knowledgeable MS friends, the more I started to "come around". There have simply been too many people using it and although the evidence is all anecdotal, the positive effects are too compelling for this drug to be any kind of quackery. As well, there are now some neurologists that have seen how positively their patients have reacted to LDN and are now prescribing it. There is one neurologist at the University of Texas that is going to present one of his LDN patients to the research board there as a case study with the intent of establishing a trial. So LDN has gone far beyond being some kind of "designer drug" for MS and has attracted the scientific medical community.

Each of our views about the CRAB drugs are at the opposite end of the planet ) Having said that I have no problem with a patient deciding to drop their use for LDN and I guess that is something we will never agree on. And at this point, I know we could never convince each other differently.



MS Caregiver provided a link (the last one on her list in the message above). The article was written by Dr. J. Wright and he compared Dr. Jonez's work with that of Elaine Delack and Prokarin. I found that extremely interesting to read and it will give you an idea of where histamine is coming from. I strongly suggest you read it...I'm sure you will find it interesting as well.

I'm still not too convinced about the hype on vitamin D. While an important vitamin in our system, I still don't see that it is vital when it comes to getting MS. Maybe I'm wrong on that one.



I once thought, like yourself, that the NMSS was a basic charitable organization and not all that important. But over the past few years I have learned differently. They have a huge impact on how doctors and MS patients view the world of MS. By merely making a press release, they have the ability to sway the thinking on MS. I agree that going around the NMSS is a possible avenue....but when it comes to MS, that is a very difficult route to follow.

Harry

Harry, I think the Internet acts as a check on the influence of all kinds of organizations including the NMSS. If LDN works, or histamines work, or something else works, I really think it's impossible for anyone to squelch them to the degree that you've assumed. What really matters, though, is for advocates of differing approaches to be thorough and factual. We all know about the rampant quackery out there.

Willy,



You are right in that if there is enough backing for a particular med, the NMSS won't be able to stop its progress. LDN has enjoyed a huge useage, mainly because of its very low cost. If Prokarin was that inexpensive, I'm sure that it would have made more gains than it has now.

In the meantime, thought, the NMSS has made attempts to discredit both LDN and Prokarin. It's effect on LDN will be far less successful because the drug has gained so much attention and is used by so many people. But not until some clinical trials are done will there be scientific proof to silence the NMSS.

Harry