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

Alaska adventure with MS

My mom lives in Alaska. I am fortunate to have Wils Mom as a "mom" also, and my mom like a mom to Wil.  I had not seen her in ten years, since she was married, and swept back to my hometown of Juneau.  I was going to just show up and surpise!!! But my Marion mom told me part of the fun is the expectation.
I had left hints, that we were going to Sitka, and staying in the old Military Hospital.
-Sitka_International_Hostel


 This was turned into a youth hostel, many years before.  But she assumed it was for MS, getting worried it was a ms hospital until I told her.

Traveling with MS, something new. Does medicine need ice? Or cool enough, as it was the end of tourist season in Alaska. A bag bigger than my day pack was used to just carry medicines.  I failed the stand in TSA machine, as spasticity was moving my muscles. I had to show and open some liquid medicine, and have a pat down.

We  wore masks on the plane to keep viruses away from us. You get some interesting looks.think one guy thought we had the plague, while another just asked.. A transfer was made in Seattle, then landing in Sitka, which was home for a few days. Sitka, a expensive place to live, but a town untouched by the huge tourist ships. The huge hotel is owned by the cruise ships though. There is a brewery there, a bus ride driven by a 92 year old, with locals telling him where to turn will get you to their location.  --------------------------------------------

Baranof island brewing Has some of the best beers I have tasted. The Hotel has some on tap, as we dried off from the rain storm and had dinner. The day we arrived. The walk across the scenic bridge was amazing to get to town. it even rained on us, to get us soaked. But the view in the rain, could not pass up. The hostel made a excellent building with history. The Fresh halibut is a wow factor to eat.

Everything was close by, and food was exceptional.  Some places were already closed, as Just because we were a few days past The tourist  season. Two days in Sitka was not long enough.

The next leg was a quick flight to Juneau. It was a packed flight with students on a trip to Fairbanks. Juneau airfield, don't miss it by a foot in landing a plane, or you will be in the ocean.

The cruise ships had stopped, and boarded up most of the town, as they move their employees and merchandise to the Caribbean. This part of town has changed since playing as a kid.  the state ferry dock used to be right down town, not right miles from town with no transportation to or from it.  The Baronof Hotel was now owned by the cruise ships, and the old paintings that made it Grand were gone. A whole section made for many cruise ships to dock, and walk a new boardwalk, a library with a seven story parking garage would be small compared to a ship next to it.

New stores, a Tram to go to the top of the Mountains, even though wooden stairs are still down the street.


 Think Wil and I spent a week at my mom, Judy, and her husband Wayne. My Aunt and her husband Don were in town from Haines. He was full of stories.. Juneau is a place to see, but not quickly on a cruise line tour. you just won't see everything , as just A few hours, as rushed by a cruise time frame.

The glacier I slid on as a kid had receded a mile, and I was not up to a hike to it, but enjoyeenjoyedd it,  and a paved road to it.

Their was a freeway!! , dirt roads paved,  The chicken park still there I played at, a new bridge across to Douglass island.  Saw my cousin, but not long enough.


 Fatigue had hold of me, so seeing places  was tiring me out extremely. Meds were my only choice, as could not bring other concoctions. Staying awake, even with modafinil was hard, but enjoying the sights, scenery, still could not be done in a week. Spasticity and MS symptoms all there.

. My mom's church invited us to a salmon lunch. A few people there, but only side dishes were on The table. The Elders were out fishing to bring the salmon fresh to the grill. Best ever!  Freshest!I
And so many leftovers for everyone.

Think our dogs missed us, as a ten day trip, watched by Marion, my other Mom.  This amazing race took place in the end of 2015

Thanks for reading
JoeY

Toxic Drugs used with good effects

A Drug made specifics for MS  patients, for increased walking speed. Could Ampyra do all that? It is in a timed released pill that is taken every twelve hours.

dalfampridine, also known as Ampyra, is made specifically for MS and walking.  It is derived from a toxic substances used to kill birds, or deter them from parking lots, or unwanted areas.


Ampyra helps electrical signals move better along the nerves in your brain and spinal cord. When you have MS, your nerves lose the protective coating, called myelin, that helps messages zip up and down your body.

Ampyra does have the same active ingredient as an avian poison. Many  drugs are based on toxic substances, such as rat poisons. Experimentation has even been done with spider and scorpion venom to treat various diseases. botulinum  is a deadly bacteria.  It's the way they are dosed and tweaked that make them safe to use as directed.

You also have to keep in mind, we are not birds or rats. We can test our drugs on animals, but sooner or later, those tests move on to humans..

Something toxic to them may be beneficial to us or vice versa. Look at how many things we happily and safely eat that could kill our pets...things like chocolate, avacado and grapes, for example.

what can kill or harm one animal ( a bird in this case) doesn't necessarily have to kill or harm another (human). 4-AP, the compounded in original version of Ampyra (still available) has been safely used for many years.

Hamlet, Shakespeare said, "There is nothing either good or bad, but thinking makes it so." Funny how the name attached to something turns it either good or bad.

Chemotherapy for cancer treatment is a kind of poison, but it's fine-tuned for the purpose and, although it makes people sick by itself, people wanting to survive cancer are willing to to take poison to defeat a greater evil.

Nicotine has been used as an insecticide, and ethanol can be poisonous, yet people smoke and drink without much concern about the poisonous effects because they like the other effects they get from those chemicals.

In a parallel life, 4AP is used as an avicide -- bird poison. But in controlled doses, the neurotoxin effect that kills pigeons can be used to counteract the effects of demyelination in humans. When used unwisely in humans, or in particularly susceptible individuals, 4AP and Ampyra can cause seizures. That's a lesser effect of how it kills birds. (Ever stop to think about how insects die when you use bug spray on them?) But when used in a controlled way, the same chemical allows people to walk better and resume doing things they couldn't do otherwise.


But 4AP's double life as a killer and a helper isn't much different than that of botulinum toxin.

 Botulism  for clostridiym botulinum can kill people, but when the toxin is refined and used selectively and appropriately,  such as onabotulinumtoxinA (Botox), can relieve spasticity and make people's lives significantly better.

Botox has risks, and those risks have to be weighed against its benefits. Ampyra is no different.

Brain & Life, the April/May 2018 has a great article.
Brain&Life


A must read,  on how it can relax muscles, as brain signals, which are damaged by MS, sending the nerves), to contract.

I do get Botulism Toxin injected into both calfs,  into my neck and shoulder muscles since the beginning of MS, done by my Neurologist.
 Ampyra has also helped keep me walking at a faster speed, and  has helped in other ways to be explained.


Thanks for reading
JoeY

Spasticity

Most people with MS will experience Spasticity.  There are many medicines, and names for similar ones.  I was titrated up on Baclofen quite quickly to address my calves and muscles being stiff. 10 mg, eight times a day maxes the amount Drs. prescribe.

 Baclofen has a short life span, so this why you are always taking a pill so many hours a day

I found spasticity to turn up a few notches at night time, this keeping me awake.  legs stiff, if not Charlie horsed, or vibrating from the muscles. I would have four tablets to take at night, along with gabapentin and lyrica.

  I was offered a Baclofen pump to be installed, but knowing after reading George's blog, I was quite against a Baclofen pump.   This was refused seven years into my MS.  Judy  writes a memorial about George, The Geek From Detroit. He will be missed.

Yes, I will jump around in the years, as easiest way to explain things, and things I know now, but did not know by doing much research.

Botox, also known as onabotulism type A, was also started as treatment early on.   the damage being done by my brains myelin sheath was causing nerves that control the muscles to mis-fire.

Many muscles are used to control each movement in the body. The Botox was injected into both calf muscles, as I was Having to tell the right foot to walk step by step. This treatment was started at The beginning, to try to slow The MS down. Botox was also injected into the neck muscles, and is also used for migraines in the forehead.  It's life span worked 62-64 days on me, but our government only allows injection every 90 days.

The Right leg and foot had turned to a three o'clock position on me. I walk with a cane as of today.

But the position of the foot leg pointing to This awkward position  caused  spasms, Charlie horse on both legs, and toes to curl under or outwards.  there was no room to add more baclofen to help.

The Botox helped.

A New medicine, ACTHAR.   https://www.actharmsrelapse.com  https://www.actharmsrelapse.com

  was used to try and slow the MS down. Injected into the thigh muscle for five days.

"H.P. Acthar (repository corticotropin) Gel is an adrenocorticotropic hormone used to treat relapsing multiple sclerosis (MS), infantile spasms, and nephrotic syndrome (a collection of symptoms that indicate kidney damage). "
Acthar

Achtar side effects

 My partner, Wil, had the fun of injection of the three inch needle.  I wish the insurance was not as stingy on this medicine, as I would ask to try it a few more times over the years, but prednisone would be used instead, as insurance companies like to play Dr. Giving you steroids instead.


The Next newest drug, made especially for walking was added to my concoction of daily meds shortly after, and one my next article talks about Ampyra, and the  Botulism (botox) being injected

Thanks for reading
JoeY

Vitamin D, New Doctors

Months seemed to pass quickly. I was now seeing two neurologist. My main one who gives me Botox into my calves and neck, every three months, and a New Neurologist  at UC Davis. She covered all the neurological test, and timed walk. She would see me about every six months, when she was not going over me as patient "X" to her students.
She did a vitamin D test, which came back low enough for Rickets

Rickets is a condition that results in weak or soft bones.  Vitamin D is found Low in many people that have Multiple Sclerosis

A Endocrinologist from UC Davis was brought in board, as Vitamin D, is also a Hormone.  Since I was also on Testosterone Therapy, which also can be low in multiple sclerosis,  She  would begin to monitor the whole endocrine system.

Slowly adding Vitamin D3, in hopes to get me to 80-100 range neurologist wanted me at.

Vitamin D can be tricky. To much, can leach calcium from your bones, and enter blood stream, or cause kidney stones. It took months, monitoring, the level every three months.  Gallons of urine were brought in, blood test, and her slowly raising levels of vitamin D after the tests.

 Dr.-coimbra's MS-protocol was going on in trials with good results in other countries, helping slow down Multiple Sclerosis, but my Endocrinologist was being Cautious, and not to raise it to fast.  I could understand that upon much research.  I would tell anyone to use caution and have A Endocrinologist as part of your team, when raising Vitamin D, anything above 3,000 iu/week.

For some reasons not known yet, it takes me 150,000/ iu week to maintain my vitamin D in the 80s range.   I found 10,000 iu pills made by https://www.puritan.com.   This would only mean 15 more pills A week to take, or two per day, and three on Sunday.

  Much research has to go into this high of dosage, and what not to take, to help put calcium back in my bones , as Osteopenia was found by a bone scan.

"if you have osteopenia, you have lower bone density than normal. ... Bone mineral density (BMD) is the measurement of how much bone mineral is in your bones. ... If you have osteopenia, ask your doctor about how to keep it from worsening so you can prevent osteoporosis."

Why was my body not absorbing Vitamin D, or Testosterone?. Another blog to discuss.

A Heart Dr was also brought on as part of my team. The heart is a muscle that can be attacked by Multiple Sclerosis. More about the heart later, but my heart came back strong.

Thanks for reading
JoeY

Constipation and MS

             The down and ugly of constipation with multiple sclerosis.

I could tell you daily how I am doing, but why re-create a scenario that has been written about? I have tried a lot of different items, and do not exclude natural fruit, like bananas, figs, dates, prunes, bran, psyllium, and more.

Within the second year of multiple sclerosis I was put on Generlac, A prescription medicine, to help chronic constipation.  Viberzi, another drug was tried for a year, for diarrhea.  Perhaps all Multiple Sclerosis problems. Metoclopramide was then used, to help bowels empty, and with how my stomach started to bloat and become distended.

my partner mentioned, what if it was not all MS?

 A upper and lower scope was done by a gastrointestinal professional a few years ago, to  to try to find answers. A few items discovered like a hiatial hernia, and ulcerative Colitis, which is listed with Rare Diseases.

VSL#3 DS  900 billion bacteria, prescription strength, has been used to help UC, and has also been used in trials with MS.  Neurologist Review,  and  Probio Multiple ND (ACTRIMS) 2017  are good places to start reading.

UC Davis, San Francisco was also doing a study with this super strength probiotic.  I was doing a mirror of this study, except I knew I was using the real VSL#3 DS.

My Stomach  has been  bloated, then became distended since the beginning diagnosis it seems, looking at last notes. Just gets worse.
 Bloating and distentention

 A bulge in my belly button was a hernia fixed  in early diagnosis.

Around the same time, Ubiome.com was doing a pilot study of the DNA of what's in your Gut.  That's for another blog of its own.

Constipation and Diarrhea still continue to be ongoing daily.   In a blog written by patientslikeme.com , they write about, and explain constipation and Diarrhea called :  Openness.

 If you never had Hemorrhoids, that's another word to look up, both the inn ward and outward ones.

A  squatty potty, or block of wood to put your feet on, along with  a proper massage of bowels, reading materials, and time also helps.

If other therapies have helped others, I would love to hear about!

Thanks for reading.
JoeY

Alternating Extropia to MS

I know this blog will jump around in slots of Time, so think of it as episodes thru the years, and looking back.

I Went in for eye exam at Costco. just happened to book a good Dr there. He was quite thorough with dilation, and putting in prisms in my near sighted glasses.  and needing saying I needed a second pair to see.  I needed two sets, as the thickness needed and a prism he was adding.

The eye Dr was in end of June 2012.   alternating Exotropia was going on. I was having double vision since December 2010.
He wrote a few items down, to let my GP know, and a specialist may be needed.
Alternating Exotropia and a bunch of other words I would have to look up.

My GP had already ruled out most of the other aspects of me.   This led my him to seek a Neurologist outside the area. He would not tell me what his thoughts were, but years later, I saw it written down... Multiple Sclerosis suspected. I had asked about this possibility, as my disease was not  going as CRPS (Cronical Regional Pain Syndrome), which was a diagnosis given to get Dr's going.

more blood tests July 2 2012

MRI brain was done July 18 2012, at our local hospital. The Reader of the mri, puts in bold print NO SIGN OF MS. --------------------------------------------

I would not know that hospitals have different magnet strengths of MRI machines until much later, when a DR mentions politely that the hospital I went to does not have a strong enough magnet. But more of that in another post.

My GP said local neurologist did not go far enough, as neurologist wrote in his report i was faking  symptoms, in Dr terms.

My GP was smarter,  sent me to one neurologist  out of our area.

This happened quickly. The Neurologist, A old fashioned guy in his 70s, was seen at his outpatient quick fix hospital center. This led to  him looking at my films of MRI done, and a man of little words. Uhm, ouhum, yes, keep these in this order. He then ordered a
spinal tap,  done  Aug 1 2012 at his main office.

This was done by him in his office.  Reading now about spinal taps, I think I had the best neurologist do it in the country. More Blood was drawn, analyzed, and bands were seen in spinal fluid. He mentions treatment to begin. Shows me the three lesions on film, quite prominent, with shadows of old lesions. There is a rule of time, lesions of new and old, along with bands seen in the spinal fluidfluid, and ruling similar diseases out.

Copaxone ordered and delivery made, as a first line Disease Modifying Drug (DMT)
The next was MS treatment Using Botox September 13 2012. This is a different Botox, then used for looking pretty. It's purpose was for Muscle Spasms.

I had already reached the maximum dose of Baclofen, trying to control Spasticity,  more of that in another post.
A Diagnosis of:
cervical degeneration disc disease
Multiple Sclerosis

Optic Disk Pallor and Right lateral gaze nystagmus  was recorded going on by 2013

But much  more on the positive side

Thanks for reading
JoeY