Panel member for newest MS Drug

2016 october, myself and my partner were invited to be on a panel with thirteen other people who had PPMS, and their partners.  We had just returned from another Alaska trip, which I need to blog about. But those were easy short airplane trips, a hour here, stretch, and your there, relax. Change planes, relax. But I had not recouped from Alaska, or seeing mom and our friend Larry and Karen from Sequim, when given this opportunity.

I had to really question being cooped up in a airplane for three hours, to Chicago from Sacramento, and another hour and half  car service ride to airport, plus going thru TSA checkpoint with twenty medicines, syringes, and documents.

I had failed the checkpoint on the Alaska trip, as TSA agent yelling commands to raise arms higher and keep feet on floor map as machine spun. My spasticity set off the alarms for me to be patted down.  I have since learned that I can not use this machine, and I am taken to the side of machine, and even My cane has to go thru x-ray
 My liquid medicine, even if unopened, gets opened and tested.

I finally conceded to go, when their interest in our participation was, they would put us in a sleeper car on Amtrak train, for my spasticity, for trip home.

 I had never ridden a train before.  That was awsome.! Trains are not made for The handicapped, but they gave us The handicapped suite. Beds that folded down from chairs, to make a bunkbed. A private toilet, but we used one with a door right outside our room. A Shower room was next to that.  The room Took up train from side to side. Our room attendant was wonderful. You did need to climb winding stairs, and cross quite a few sleeper cars upstairs to get to domed observation car, and dining car. All meals were included.

The meeting of the Genetech team from San Francisco, and researchers, scientists, the meeting producers, Bruno mars from Switzerland, the head scientist for the secret product we were panel members on.  It was a great opportunity, and would give input again to see steps needed to obtain FDA approval.

We were shown graphs, of what looked better,  the new drug, being a molecule away from rituxamb, which just lost its patent. Marc tells more than I can in wheelchairKamikaze.com, and I can be relaxed I did not share anything from their 24 page attorneys small print release form that we both had to sign. The Drug I had already figured out was Ocrelizumab.
ocrelizumab commentary by wheelchairkamakaze


I figured out that it was the newest drug for PPMS, as that's what all the 13 panel members had. Everyone was on Ampyra, the magical drug to help keep us walking. Everyone used some type of mobility device. Those that had stopped their primary Drug , immunology modifier, we're limited to wheelchairs. Had to take a mental note. Questions were answered with vague answers from their speaker, who was having input from their team of lawyers, and research team.

They fed us good, was a first class hotel, and a shuttle car, which I forgot about. The Chicago airport greeted me with a wheelchair, but attendant knew no english. I walked my Charlie horse off with cane, as he pushed bags around. We went up and down employee elevators, until finally getting to a airport hotel bus.  A adventure inside the Chicago International Airport.  A call when returning home told us a car service has been awaiting for us.

Matt has in his post this year, with him starting.  My First Ocrevus Infusion

My nephew lives in Chicago, so we got to take the Blue line down and have dinner with him, and see my sister in the morning, before being taken in a Lincoln navigator to Chicago Amtrak Train station.

This is when the World Series was playing and the winning events were going on. Crowds of people. Would not of found train, if it were not for red carpet treatment with shuttle to train track.I

The Amazing Race Amtrak took us straight across from. Chicago to Sacramento.

Thanks for reading
JoeY

Quinine Toxic or helpful?

What is JoeY talking about now, you will ask.--------------------------------------------

Quinine is still added to Tonic Water. This is what you can use to make Gin and Tonic, or drink it alone. The USA banned quinine in all the other medicines that were available made with this, except Tonic Water, and limits how much they can use.

Quinine is made from the cinchona bark. As you might know, cinchona bark consists of quinine, which is toxic.
 
Quinine is a unique substance. It comes from the bark of the cinchona bark.

  It has a legal limit of 83 ppm in carbonated drinks, Tonic water, the only one.   Besides the use in Gin and Tonic, it was used medically for cramps before being banned in the USA.

potential-dangers-of-homemade-tonic-water.

"take one of the most popular tonic syrup recipes, published by Jeffrey Morgenthaler: 

Basically, it's 6 cups of liquid to 1/4 cup of powdered cinchona bark, which is about 35 grams of cinchona. Extrapolate from that and we're talking about 35 grams of cinchona per 1.4 liters of end syrup, which is 25 grams per liter, and if it extracts fully, contributes 1.25 grams of quinine per liter, which equates to 1251 parts per million. That's 15 times the CFR standard.

If you use 3/4 of an ounce of that syrup in a Gin and Tonic, you're adding in 27.5 mg of quinine - more than double the amount of quinine in a commercial gin and tonic. 

Note: Does a syrup extract quinine fully from the cinchona? No - but it extracts faster from powdered cinchona versus cinchona chips or quills.

Note: Does a syrup that is sieved through a french press or a coffee filter have a high percentage of solids still in suspension? Yes - and any of the solids you swallow contribute the full amount of the quinine as your body digests the powder. "

You must also hear The researchers notes read from test done by scientist. This may be enough to make sure to talk to Doctors before use. 

YouTube video Notes on Quinine

The Baclofen I am on was maxed out on the limit that I could use.  Diazepam in low dose was tried.

The spasms, Charlie horse and muscles in my calves not letting up.  Botox was being used every three months, Injected into certain spots of the muscles, by a Neurologist. This would last 60 days.

Research was done when Neurologist mentioned Quinine may help. A EKG was done of my heart.

A regular quart bottle was taken of  Tonic water which contained Quinine.  Nothing,  but it has A lot of sugar, and the sugarless has a sugar substitute, what I thought had been banned twenty years ago.

But not enough Quinine, and to much sugar.

My research led me to Quinine. The Dangers of Quinine, and how to make your own.
I found some suppliers, buying a pound of Quinine bark, and following a recipie by Jeffrey Morgan

https://www.jeffreymorgenthaler.com/how-to-make-your-own-tonic-water/

https://www.jeffreymorgenthaler.com/how-to-make-your-own-tonic-water/

Their are different types of bark, and more research. This site has a lot of information.

Quinine info Rain-Tree

This would amount to taking a shot glass, or a ounce of homemade quinine, which is about 27 mg quinine. 

Drinking this elixir would immediately stop my curling toes, and the bottom of the feet to the calves. I did not use any gin, and lowered The sugar content, as the Tonic quinine is what I wanted.

The recipe, and math was gone over with my Neurologist, and Heart Dr, so I would not build up to much quinine in my body. 

30 grams per ounce is what I try to obtain. Not more than a shot in a day, and only when really needed. 

Regular checks with the heart Dr, doing EKG, Echos,  GP, and Neurologist is a must! Listen to video.

  I could say this is a wonder bark from the tree, but you need to listen to the researchers notes to know why this was pulled from the market.  You need  your GP, Neurologist, Heart Dr, and all involved in your team to know before making it, or use of this substance. I am not promoting its use, or making this, just my research, and what worked for me might not work for someone else.

I am not saying, go make your own quinine.  But try a bottle of Tonic Water. It might be all you need.

Or better yet, a Tablespoon of yellow Mustard, has wonderful properties, scientist can not explain how Mustard will bypass digestion system, and calm muscle spasms. This was A mention from my Neurologist to try years later. Mustard. A plain yellow mustard works.

Thanks for reading
JoeY