Tuesday, January 18, 2011

Why Do We Need Clinical Trials For CCSVI?

Am I the only one having a problem with this?

Clinical trials are designed to test the effectiveness and safety of pharmaceutical products. It also serves as a great way to make a lot of people a lot of money. The cost to bring a drug to market through trials range to about $100 million. When you are a patient in a clinical trial, you essentially give up your rights as you are taking these drugs at your own risk. If you die.. the only outcome is that the drug "might" be considered unsafe. It doesn't mean it won't go to market, it just means they may have to add a couple more warnings to the label.

As a patient in a clinical trial you become nothing more than a guinea pig for a pharmaceutical company. The only difference, you have to go home and feed yourself, while the actual lab animals used for testing get to be fed by their handlers.

Clinical trials for surgical procedures to be allowed is unheard of. How many patients went through clinical trials for heart transplants before other patients were allowed to get new hearts to be able to live? Where are the results of these studies? I can't find them. Nor can I find any results for clinical trials for angioplasty, any transplants, venoplasty for diabetics, appendectomies or even tonsillectomies. It is unheard of for a surgeon to need a clinical trial to do an operation to save someones life.

So my bigger question would be, "Who is the stupid ass that even mentioned the words 'Clinical Trail' for CCSVI?

The CCSVI procedure is the same procedure used in hospitals around the world every day. A wide range of patients need and receive the simple angioplasty procedure. The same procedure that I had done in my jugular and azygos veins. And I lived. Actually, I got much better. I never got cured and I never got fixed. I got better.

The world runs on greed. It is a sad fact and a lot of us refuse to admit it. But it's true. It is no secret that MS is big business. A life long incurable disease that causes major suffering. A pharmaceutical companies dream. An endless supply of guinea pigs. It is no secret that the Neurological Societies of the world have taken the medical world by the throat displaying some of the most outrages God complexes ever seen. It is also no secret that the CCSVI information came out just before the clinical trials for several oral MS medications were to be released.

For MS patients, Disease Modifying Drugs (DMD's) such as Rebif, Avonex and all the others need to be injected. A major complaint for these patients is adverse reactions like flu symptoms to injection site issues such as scarring. After about 20 years of complaining, the pharmaceutical companies started to develop the same poisons in a pill form. These are the kind of drugs that cost a $100 million to run trials on. The cost of these drugs are no different than the cost for the injectables and in some cases they are more expensive. The payout for these drugs will exceed $ trillions. Or so they thought.

Then along comes a vascular surgeon in Italy who was tired of seeing his wife suffer from this disease. I have no doubt that he read the theories about MS possibly being a vascular condition. They have been around for almost 130 years. Even German Neurologists suspected this, but had no way to prove it. Until Dr.Zamboni comes along thinking outside the box. He found a way to image it so it could be seen. Though not yet perfect, major obstructions/constrictions can be seen. He showed he could see blood not properly draining from the brain due to anomalies to the veins returning blood back to the heart. Then he figured out a way to correct them. And it worked.

Since then, literally thousands of MS patients have had this procedure done. There have been very few complications. Although a couple have actually died and that could be upsetting, until you see the results of what killed them. They died because their doctors at home refused to treat them because they had a simple angioplasty procedure. So it wasn't the procedure that killed them, it was their own greedy doctors that did it. Regardless, this procedure has killed a lot less than heart transplants did until they got that right. The procedure is safe, it's our politicians and greedy doctors that are trying to kill us.

The Clinical Trial for CCSVI is a cash grab. Researchers will make a ton of money in grants. The researchers that are running these trials for the most part are running them to prove they don't work. This could be a stall tactic to allow time to generate more revenue for the losses about to be incurred. It could also be designed to fail from the beginning. There is no way that a DMD would go to market if the facts were presented honestly. A trail that shows 30% may have had some improvement  looks a lot better than the 70% of patients experiencing no change/worsening/dieing of disease/drug. So it is easy to leave out the 70% who got worse or died. Regardless, it is still greed driven.

But the greed doesn't stop there. Now MS patients are flying all over the world and paying upwards to $25,000 for a simple procedure that could be done at home for less than $5000. And $5000 is being very generous as the cost in Canada is closer to $2500. Patients are also finding out that some of these clinics doing these procedures are not all the end all to be all. Some find they are paying $15,000 to only have one side done then need to return in a couple months with another $15,000 to get the other side done. Medical Tourism has always been a great cash cow. Now they get to add MS to their portfolios.

I did find one Clinical Trial for a surgical procedure. It was actually done the same way that we as patients are asking for. They didn't take a bunch of patients and controls run them a bunch of tests on them. They went to the patients that had the procedure done. Then they used the data to find the BEST surgical procedure to achieve the BEST results. The results were, no change regardless of the procedure method and the surgical condition was Carpal Tunnel Syndrome.

There are literally thousands of MS patients worldwide that have had this procedure done. They are all screaming to be heard that this works so others don't have to suffer. Their doctors and politicians refuse to listen. We as patients know this works. We also know it is not a cure and we still need help. But our doctors refuse to listen to that also.

Friday, January 7, 2011

How Many Have Ignored This As Well?

I spend a lot of time online. I have no choice because I am always searching. Sometimes, things just appear that catch my attention. The following is a letter that was posted online that I received permission from the author to share with you. When I read this letter I actually smiled, and I am sure most of you won't. But after you read the letter, I will explain why I am smiling.

When I was a young man, (Well around the age of 8 years,) I remember one summer afternoon, I was playing with my Tonka trucks on the front yard with one of my friends. Then, out of nowhere, a town police cruiser pulled over a middle-aged man driving a big blue car. The sirens & bubbles really caught our attention because we spent most of our childhood watching the show COPS on television. We walked over to the very end of the yard where we weren't allowed to go any further, to watch the interesting situation. 

The police officer walked to the drivers side door of the big blue car, and started asking the man questions, I couldn't quite hear what they were discussing due to the loudness of the busy street, but we had a front-row seat to see what was happening. After a few minutes, the policeman opened the door and was telling the man to step out of the car, the man did not hesitate, and it looked like he was very cooperative. Standing on the side of the road, the man seemed very embarrassed. As the police officer searched through his car, he noticed the two of us watching what was happening and nicely waved to us with a big smile on his face. As kids, we were told to never talk or communicate with strangers, so we just starred at him blankly. 

We changed our attention over to the police officer again, who was looking through the trunk. All of a sudden, the police officer gets out his weapon and points it at the man, immediately the man raised his hands in the air and knelt down on the pavement. The police officer walked up to him (still had his pistol pointed at him) & handcuffed the man, and made him lay on his stomach. The officer walked to his car, and started talking on the radio. After five minutes, two other police cars were on the scene. The officer who pulled the man over, showed the other policemen what was in the trunk. 

By this time, the traffic had calmed down & we could hear what they were saying. One of the officers, pulled out a big bag of marijuana from the trunk, I didn't know how much there was in the bag then, but now with a little experience I'm positive that he had about a half pound. The officer put the bag on the hood of the man's car & lifted him off of the pavement, they stood him in front of the car and asked him "Sir, what are you doing with this?" He replied "It's my wife's medicine." 

The officers, after they shared some words, they started pulling him to the police car, I remember the look on his face as he shouted "You can't take her medicine! She needs it! Don't take her medicine!" They tossed him in the back of the cruiser like he was a murderer, the officer slammed the door closed & drove away. As the car drove a few feet in front of us, the man looked at us, with tears in his eyes. The other officers took the bag with them, and left. Later on, a tow truck picked up his car and that was it. 

  I'll never forget that experience, the man was kind and respectful but the police treated him like dirt. They took his wife's medicine, which the couple worked hard for & the police just threw it away, leaving the husband with a jail sentence & the wife with pain & sadness. 

This needs to end.

-Adam J. Carpenter, New Brunswick.

***Adam is a high school student from New Brunswick, Canada.

Sadly this is a tragic story all way round. An 8 year old child witnesses a man humiliated and treated like a dangerous criminal. The man was not guilty of any crime, unless trying to save a loved one has become against the law. And many of you are probably not smiling after reading a story like that.

Now, I will explain why I am smiling. This was written by a high school student. He saw this atrocity with his own eyes and it affected him.  Whether he knew it at the time, he now realizes that he never should have seen anything like this. At his young age he actually understands. He's brave enough to come forward. Now imagine how many have also seen or known of these atrocities yet continue to ignore them,

So of course I'm smiling, he's our future. We may still have a chance.

Thursday, January 6, 2011

A Candid Chat on MS, CCSVI, Cannabis, and More.....

This is what happens when I get bored and start to ramble. I apologize that it is in 5 parts, but it is also being used in clips and sound bites by a few other people for projects in the works.






This is the information that the healthy people need to stay healthy and the unhealthy people need to get there.

Sunday, January 2, 2011

Even I Can Be Amazed

This isn't really an update. It isn't even a story with a happy ending, nor a sad ending as the story is far from over. Nor is this an excuse for not updating more on my MS and recovery from the CCSVI procedure. Actually this isn't even about MS. But it does explain why I haven't been updating as much as I and others would like.

I have no job. I have no money. But I do have a thirst to keep people from suffering. I should have become a doctor but I didn't. (Probably would have had my license pulled for caring about patients.) So I help by passing on knowledge and contacts. I am a consultant. I consult to a number of patients, groups, and doctors.

I do not sell drugs. I don't even give them away. I help patients and their families secure a safe supply, and I provide the information on how to best administer. I work with the patients and their doctors on filling out the required paperwork for Health Canada as well as educate.

A week before Christmas I was contacted by email about a patient needing some assistance and the referral came from a doctor I work with quite often. The one requesting my help was her husband and I will call them Mr. and Mrs. H. Mrs. H. was diagnosed with breast cancer last spring. She underwent a double mastectomy and 30 different radiation treatments. This fall during the last of the radiation treatments she was advised that she also had a brain tumor that was spreading rapidly. The morning I was sent the email the family were just advised that there would be no way that she would make it home for Christmas and being that their family lives overseas, it might be time to start making some of those calls no one wants to get.

Quickly I realized I wasn't going to have a very good Holidays if she was suffering. By Monday morning, Mr. H had all of the paperwork filled out and signed by both his wife and a doctor and were sent priority rush to Health Canada. On the Sat. Mrs. H. had her first ever medicated cookie. Then again on Sunday, then again on Monday when I got a call from Mr. H. that his wife was doing much much better as she was eating again and joking with the nurses, and they expected her to be home by Wed.

So the family that was told they better start calling the rest of the family on Friday brought their mother home on Wednesday so she could spent Christmas at home with her family. Even I was stunned. Her husband told me that she was a strong woman, but I was still shocked. And of course extremely excited and happy for the family. But I have also been around long enough to understand the Prednisone "Superman Effect" and any drug including cannabis can do this. If you get relief from pain, you may just feel like Superman, but you will hurt yourself if you are not careful.

I wished them well, made them well aware that even though she felt good, she had to take it easy, and made arrangements to meet with them at their home today. Except things never work out as planned. Instead of getting to meet her at her home, I am rushed off to the hospital to meet her.

Over the Holidays the one thing I hoped wouldn't happen, happened. She started to taste the medicine. I can totally understand how she feels. As much as I love the baked goods, the underlying flavor reacts with my gag reflex, and it happened to her. Because they didn't want to ruin my Holidays, (grrrrr) they decided to wait until today to tell me that she stopped eating the medicine and was back in the hospital.

We got to the hospital, and were met by a nurse that informed us that she did not have a very good night and that they have called in her doctor because it doesn't look good. Her husband and I went to her room and I found me. Or basically what I looked like a few months ago. I have lived with so much pain that I know pain and better yet, I know when someone else is in pain. My heart ripped. Unable to sleep, unable to be awake, and unable to keep even a sip of water down. I more than know what that is like. I also realized that there was no way we would be discussing whether she wanted to try the same medicine in a different form. 

Except her husband asked her, and her fear was not being able to keep it down and whether or not it would react with the high doses of morphine they were pumping into her. First and foremost, I never push anyone to do anything. Even in distress, a patient should have a choice. We left to bring me home so he could go back to be with her. On the way out we meet the doctor on the way in, that drags us into a private meeting room.

I will call this doctor, Dr. B. because we have a few of them here. Dr. B proceeds to tell Mr. H. that it is very bad and they are pretty much out of options. Dr. B. and I had met before one time when I was the patient in distress, and he found out that I could help myself better then he could, but still insisted I was wrong. I have been given that prognosis by a doctor and it is devastating. The one thing I am thankful for is that it was given to me and not Chrissy. It was much easier on her for me to tell her than someone else. So I spoke up.

Pretty much word for word I said the following....

"I know how you doctors in this town feel about Rick Simpson and his claims of curing cancer, and anecdotal or not, the man regardless of his approach is proving to be right. I will not make a claim that it will cure cancer  as I, no matter how many times I have been told I have it, do not have cancer. So I can't make that claim. But I do know pain and I know what it can do for pain, and I can back that up with Dr. Marc Ware's study that proved that more is better to remove pain. Narcotics do not remove pain and you as a doctor know this, you also know that the mechanism is designed to trick the brain and nothing more. Cannabis removes the pain. We are not asking you for permission, nor even a prescription as it is already secured. We are informing you that this will solely be her choice. My purpose is to not cure her of cancer but to make her more comfortable. We can do this with cannabis, and the other medicinal benefits of the plant can go without saying while knowing there will be no reaction with anything you prescribe. Will there be a problem with this?"

His response.... "Do we cut back on the morphine then?"

And again it is her choice. I explained that if it works for her pain then she will let them know that she doesn't need the morphine. We quickly discussed some signs that should be watched for and I was taken home. Mr. H. returned to find out his wife had a great chat about her using cannabis to see if it would help with the pain to at least help her be a bit more comfortable. She said he basically gave her his blessing to go ahead and try it.

That in itself could be the end of a story with an amazing ending, but of course, the show always goes on. I just got off the phone with Mr. H. I think if he could have gotten through the phone he would have kissed me. I gave Mr. H. the idea this morning to wait for about 10 minutes after a shot of morphine to see if she could keep a small sip of water down, if so another sip with a small dose. Well, just before noon she did. Mr. H. sat and watched her and right on schedule at about the 45 minute mark she started to change. She melted into her  bed and rested. Then she woke up, and from the sounds of it proceeded to eat them out of house and home.

Each dose will last 4 to 5 hours. Mr. H. was on his way back in to see her to give her another one and to grill her about how she felt after the first, with plans for another one at 10. You have to bow down to a man that loves his wife this much. Better yet, Mr.H wants to be there for when Dr. B. goes in again. To see if he wants to change that shitty prognosis yet.

So like I said, this story is far from over. Mr. and Mrs. H. still have a long hard road ahead of them, and we can only hope we still have time to pull off a miracle. But take it from someone that has been there.... when you can no longer eat, you no longer have the strength or will to fight. As long as she keeps eating she at least has a fighting chance. Stay tuned, this story is far from over and that is why I have been so busy. I really am out there trying to do my part.