Summer 2018 Train Trip

My Partner, Wil, is great at finding deals. We did not want to be away from our dogs for very long. Alaska trips became out of our budget, with the cost of flying.  Wil found a flight to Chicago where all Amtrak trains leave from. "Mom" watched our dogs for few days.

I packed a unopened bag of psyllium hulls, and a unopened bottle of generlac, a regime I was on for adding fiber for my MS and bowels. TSA however did not like that. I had to open each of the factory sealed containers.  So guess next time, only pack half of each, as that's all I needed for the trip, and was packing as light as possible. .  All other twenty medicines and syringes  were of no concern.

We had a car service drive us to Sacramento, as we live in a remote town, no uber or taxis to airport. This was the beginning of another Amazing Race, my mom kept up on airplane ride, posting where we were.  We made clues of what to do when we checked into our hotel.

The Congress Plaza Hotel is about a hour on the train directly from the airport. The train is elevated, going by old brick buildings, apartments, and many different areas that make up the outskirts of Chicago.  not sure how people adjust to The trains feet from their windows.

The Hotel was built in 1892 for the world's fair, and visited by dignitaries, presidents from around the world. It is known to be haunted. The rooms were all redone. Our view was on eleventh floor with architecture all around us. Willis Tower could be seen a few blocks away. Clean rooms, bathrooms in each room. The interior rooms  do not have a view.  the-most-haunted-hotel-in-chicago
 Dinner was at the Hotel with bed following, as fatigue had overcome both of us from traveling.

My Sister, lives in the suburbs, Took the train inand decided to hang out with us for the day, and help finding clues. Wil and I leaving the next day on the southern route Amtrak
I did not let her know, her son Marc, may join up with us for dinner.  Our first clue was to find her on a incoming train.  We sat in a coffee shop below ground level, and looked at the massive amount of people that kept coming off the train.  We did not know they could be in a cattle call  and forced to go two separate ways. Only half the people we were seeing.  A cell phone call located her just up the escalator above us.  It was her first train ride into the city.

Our next place, was a breakfast place. But once found, it has been closed for a year, even though their website was still current.  The guard for the building sent us down the street for a few to try. All were void of customers. It's breakfast time, so not a good sign.  We walked another block, and found a old fashioned restaurant, from the gangsters era. The food was overflowing the plates. So much we were not hungry for lunch. And so many old photos, the wallpaper, booths, freshly upholstered,  the old red felt wall paper and reminisce of the turn of the century.

Diann, Wil and I walked around looking at different buildings, and architecture. Went up to the top of a Tower for beverages, as one of our clues to go.  the cost of anything else on the menu was out of range.  Great view.

Time seemed to pass by quickly. Not hungry for lunch, we stopped back by the Congress Plaza to rest. Telling stories, as Wil and I lay ed down, practically sleeping. Dinner was approaching, and we had bought a all day bus pass. That helped from doing to much walking, by hopping on and off buses. But first we had to find the famous Gold Room

Up and down elevators, down hallways that led to locked doors. Finally on a second floor, poorly lit, we got off the Grand Elevator. But which way? Not locked doors, we were going g in circles, until I pulled in one, and it opened to a magnificent gold room.

There was a grand piano outside my sister found and played with ease. But then another circle to find the elevator, as hallways were dimly lit.

Lots of tourist and masses amount of people made for MS overload

The Dinner place was listed on skaggets by the Grand park, which we rested at.  Confusion was with the names, plaza at the park, plaza in the park. One was inside, with no people, not a good sign.  Outside was bustling, with lots of people, umbrellas and the smell of fresh food. Wrong restaurant I had emailed my nephew, Marc, but he found us. His mom had not seen him in five years, so was glad he came. Ice cream was after wards.

We took my sister to the train station, to find she had a hour till next train. As it was getting late, we sat with her for hour. This is when the night creatures come out. Panhandlers even asking you to go to ATM to get them some money. Same spiel to other people awaiting train.
The night creatures, instead of all the tourist made Chicago change. Not a place for a lady to be.

We took the train back to our hotel, fell right to sleep. The walking had made my calves hard as rock, but knew we could rest on train for next four days. portillos  Sandwich shop was found Friday morning. Best beef sandwich I've tasted anywhere.

Amtrak Train Ride through the southern states,. You need red carpet service if handicapped.   Stairs leading from the lower deck to the view car and dining car are not made for handicapped. But I was able to transverse  up and down the stairs with cane.

Poverty is extreme in southern states, as seen thru Windows of our train.

The Fire going on near mount Shasta  stopped the train in Sacramento. Most everyone bailed in Los Angeles, where the connection train was at.

Breakfast with a old timer, dressed in a suit, "Merv" who was traveling on same train was nice. He was getting frustrated with Amtrak, as they were not fulfilling their contact to get him to where he was going, or offering any solutions.  Many people were upset, as the station agent had no answers, and Amtrak was not providing any options for for this connector route closed, they knew of it A few days before. And to make matters more interesting, is red carpet lounge, led you to a elevator, to a locked room with no ventalation.  The lounge did not open on train schedules. Real maddening, as was getting overheated, with no chairs.  There was no phone, as station agent had no idea, that she was the one who was supposed to have answers on the train delay.
  Hope Merv got the next train.

There was the crew, us, and a group of few people left on the train.  Forgot about us, so we almost missed Sacramento.  The other four people decided to stay on the train, as they announced that the tracks were opened, after everyone has bailed.

 A sleeper car is the way to go, as all meals included.
 The four day Train ride made the whole adventure come together.

Thanks for reading
JoeY

Rare H63d Gene Phlebotomy and links

Rare H63d Gene with phlebotomy

I am on Phlebotomy number 13, done weekly.  The computer age allows me to see the doctors labs, which are done before each phlebotomy a few days later. Some numbers have dropped, while others increased.  Hematocrit levels watched closely, as ferritin is not a good indicator.


I was interested it HFE is a blood disorder, a blood cancer, or how it is defined, as it will last the rest of my life, like Multiple Sclerosis does. I have not read a clear answer. My Neurologist told me to ask my blood Dr at Cancer center.

Google answers asking of HFE gene,  provides a UK spelling.
"haemochromatosis an autoimmune disease?
In this severe disorder, iron builds up rapidly in the liver of the developing fetus. It is thought to be an autoimmune disease, in which the body attacks itself.

HFE link to protein government site
The HFE gene provides instructions for producing a protein that is located on the surface of cells, primarily liver and intestinal cells. The HFE protein is also found on some immune system cells.

The HFE protein interacts with other proteins on the cell surface to detect the amount of iron in the body. The HFE protein regulates the production of another protein called hepcidin, which is considered the "master" iron regulatory hormone. Hepcidin is produced by the liver, and it determines how much iron is absorbed from the diet and released from storage sites in the body. When the proteins involved in iron sensing and absorption are functioning properly, iron absorption is tightly regulated. On average, the body absorbs about 10 percent of the iron obtained from the diet.

The HFE protein also interacts with two proteins called transferrin receptors; however, the role of these interactions in iron regulation is unclear.

I found a interesting video on Facebook, or youtube. This guy uses strong magnets to show a unexplainable answer, as Iron should be pulled towards the magnet, but not in HFE.   Facebook site to iron and magnets
 His full video with explaining is On YouTube
YouTube site to full explanation

MEDLINEPLUS SHOWS HFE is
Autosomal recessive

Autosomal recessive is one of several ways that a trait, disorder, or disease can be passed down through families.

An autosomal recessive disorder means two copies of an abnormal gene must be present in order for the disease or trait to develop.

Information

I found a layman's term of this gene Hereditary hechromatosis

Inheriting a specific disease, condition, or trait depends on the type of chromosome that is affected. The two types are autosomal chromosomes and sex chromosomes. It also depends on whether the trait is dominant or recessive.

A mutation in a gene on one of the first 22 nonsex chromosomes can lead to an autosomal disorder.

Genes come in pairs. One gene in each pair comes from the mother, and the other gene comes from the father. Recessive inheritance means both genes in a pair must be abnormal to cause disease. People with only one defective gene in the pair are called carriers. These people are most often not affected with the condition. However, they can pass the abnormal gene to their children.

CHANCES OF INHERITING A TRAIT

If you are born to parents who carry the same autosomal recessive change (mutation), you have a 1 in 4 chance of inheriting the abnormal gene from both parents and developing the disease. You have a 50% (1 in 2) chance of inheriting one abnormal gene. This would make you a carrier.

In other words, for a child born to a couple who both carry the gene (but do not have signs of disease), the expected outcome for each pregnancy is:

A 25% chance that the child is born with two normal genes (normal)A 50% chance that the child is born with one normal and one abnormal gene (carrier, without disease)A 25% chance that the child is born with two abnormal genes (at risk for the disease)

Note: These outcomes do not mean that the children will definitely be carriers or be severely affected.

And another government page shows:

Although a direct association has not been established between HFE mutations and MS susceptibility or clinical outcome 109, a recent retrospective study on patients who were homozygous for HFEC282Y concluded that autoimmune conditions were common among individuals with hemochromatosis

 For technical readers,
Autoimmunity with Multiple sclerosis see page 18
Shows
Autoimmunity with Multiple Sclerosis:

From a different perspective, enhanced immune responses by mutated HFEC282Y may favor the appearance of autoimmunity. Various reports have described autoimmune conditions in association with hemochromatosis. In particular a higher prevalence of the HFEC282Y mutation was observed among cases of multiple sclerosis (MS) and was present among MS patients that had an accelerated onset of the disease and more severe MS symptoms 109, 110, 111. Although a direct association has not been established between HFE mutations and MS susceptibility or clinical outcome 109, a recent retrospective study on patients who were homozygous for HFEC282Y concluded that autoimmune conditions were common among individuals with hemochromatosis 15. Expression of the HFEC282Y mutation could increase the self‐reactivity of CD8+ T cells that cross the blood‐brain barrier, via increased MHC I antigenic presentation. The HFEC282Y mutation may result in an increased presentation of auto‐antigens related to MS beyond a recognition threshold causing the onset and progression of the disease, unlike HFEWT which could inhibit presentation and maintain immunosuppression 109, 111.

The Article goes on to talk about cancers also.

Iron overload is rare in patients homozygous for the H63D mutation
iron overload is Rare with H63d Gene

Excess Iron and Brain Degeneration: The Little-Known Link
Iron in the brain

 Further restart led me to Suppression of Iron-Regulatory Hepcidin by Vitamin D. Hepcidin is a hormone, so I sent the article to my Endocrinologist, and my blood doctor.







From the blood journal, Hepcidin and vitamin D

http://www.bloodjournal.org

Blood journalI. 

Treating iron overload with hepcidin. 

Liver not making hepcidin? Hemochromatosis 

the blood journal

Suppression of Iron-Regulatory Hepcidin by Vitamin D
https://jasn.asnjournals.org/content/25/3/564.full




But mine is just opposite of what article talks about, as I have High Iron. Was on 150,000 iu Vitamin D, to keep my levels up, followed by endocrinologist.  I was found initially with vitamin D in Ricketts stage. They phlebotomy has made some drastic changes to my #s increasing, along with Testosterone. Adjustments were made, to my daily regime of meds, and to retest in a month, and again two months later. Such a rare H63d gene, then doctors monitoring, I am keeping notes. Perhaps a movie or book in their making? I lowered vitamin D to 70,000 iu/week, after being off it for a month, due to overly high levels.


I belong to All of Us research program. They sent me a email back when asking about the rare H63d Mutation I have

"Indeed, the mutation you have is quite rare so thank you for bringing this to our attention.  I am happy to report that one of the very first actions to be taken by the NIH All of Us Research Program will be to sequence the DNA samples you kindly provided when you allowed us to collect a sample of your blood. This, and any other notable mutations, will be detected by the NIH team and investigators studying this mutation or condition will be notified."

 Those interested can contact

Samrrah A. Raouf
Clinical Research Coordinator
All of Us Research Program
UC Davis Health
Office: (916) 734 5772
Mobile (call/text): (916) 502-5605
Allofus@ucdavis.edu
www.joinallofus.org
www.joinallofus.org

The next question is the HFE is classified as a blood cancer?

A video from YouTube
https://m.facebook.com/story.php?story_fbid=2224175634267849&id=479163965435700&anchor_composer=false
Facebook

 YouTube iron
Shows iron in the blood does opposite.
A complete explanation is On his YouTube channel. Something scientist should look into.
YouTube explanation of iron and magnets with bloo d

Also
/UK hematochromotis
 Is another link to check out.  Haemochromatosis

Any comments or articles of research?
Thank you for reading
JoeY

Hormone hepcidin

Major surgery and MS

 Picture  from en.wikipedia.org

October 2017, a month that pain once again went into right shoulder, but this time traveled down to the fingers of the right arm.  Non of my twenty some meds would touch this pain.  I am not on any opiods other types of pain pills for this type of pain.    My GP got me into the hospital for a MRI of my cervical spine. Not all MRI machines have the magnetic strength they need to see everything. Make a note of that, and even ask hospital.you may be surprised on how old some mri's are that are in use.

The MRI showed two herniated disk, pinching on the right and left side. Of the neck, but I was only experienced pain on right side. A sharp jab in right shoulder that would not let loose. Even tried tennis balls to roll down muscle.Spine health has a good description.


A epidural was scheduled December 26th.  This is where they inject  by needle, a steroid shot into the nerve space by guidance of a   scanning machine. Made for a nice picture of needle injected, but gave me no relief for the pain.  None of my meds worked with this jab in the shoulder that traveled down the arm to zaps from fingers.

On top of this, a optometrist appointment was scheduled before Christmas. He noticed one eye  pupil was not responding to the light shined into it. Further investigation when dilated, showed what appeared to be cotton balls on the end of the nerves.  He faxed his findings to my Neurologist, and she started a five day round of steroids by iv drip in hospital right before Christmas.  So I ended up with a double whammy of steroids.

UC Davis set me up for surgery. Their plan was to put a plate and spacers where the two herniated discs were. During consulting, they pointed out two more discs, as the small town hospital we have, does not have a strong enough magnet.  Their X-Ray picked this up.

I asked my doctors about this.  I had just switched to a new GP, who showed major concern. My Neurologist had questions.  So I asked before and then again during pre-op. They fitted me into a neck brace. Being like a car salesman, not explaining anything.  I asked Dr, why a neurosurgeon was not doing operation, due to my progressive MS.

I asked how much pain was due to MS, and how much was due to the herniated discs, as  would I not have same pain going down right side also?  I asked how long will it take me to heal, with a compromised immune system. I  asked, if they were only doing two disc, wouldn't the disc above and below break off from the stress? Would my bones hold the screws, as my bone density is low.So

This is when everyone left the room. No goodbye, nothing.  I looked at my partner, and said "guess we are done here". I went to the check out desk, where a lady in front of me in good health, this was her third surgery. Yes the plate breaks off the bone above or below the operation.  They scrape the muscle, and nerves away from bones being fused together.
A ongoing surgery needing done every time.
I was glad to of opted out, and extremely glad my me GP, was able to stand up to my questions, explaining items of how dangerous this major surgery was, why the surgeon was not explaining.

My Neurologist put me on Hyaluronac Acid  and Chondroitin sulfate   He had a brand name bottle, but  it was expensive.   he wanted me on 400 mg Hyaluronic acid. That would be four pills a day.

What is Hyaluronic Acid?

A protein found naturally in the body, particularly in the joints as a component of Synovial Fluid (a lubricant that reduces friction) and in the collagen network responsible for maintaining the structure of the skin.

Hyaluronic acid (HLA) is often called "the fountain of youth" and is known to hold up to 1000 times it’s weight in water. As we age HLA degenerates, leaving us with aching stiff joints and a dried out skin structure that beneath the surface is damaged and on the surface is visible as wrinkles.

It is thought that supplementing can help replace the lost hyaluronic acid.

Chondroitin helps prevent joint degeneration by producing collagen, which keeps joints flexible and skin looking youthful and smooth. Chondroitin also regenerates cartilage, which maintains tissue integrity and helps heal wounds.


This combination was amazing. Almost instant relief in a few days.  Scouring the Internet, I found  300 mg hyaluronic acid pill from london. So 1 1/2 pills  =450 mg.  Swanson vitamin   had the chondroitin Sulfate in 600 mg capsule.  These were more in my budget.
And worked wonders.  I found these in powder form also, with proper measuring spoons, makes it as easy to take or a simple pill and 1/2 plus

A week after I left the surgery center, I get a updated report on my neck. The report, being the X-Ray,  showed deteriorated disc space between all disc. Which would not of allowed any spot to for them to of screwed and fused a metal plates to.

rheumatorotarthritis.net has a great example of this creepy crack in neck I have delt with. I hope this helps others Article here.

https://rheumatoidarthritis.net/living/creepy-creaking-neck/

I would not know until The next October about  Rare blood cancer or is a rare blood autoimmune that I found out I have, that would of also voided any surgery. They would of opened me up, and gone uh oh, and now what...

Thanks for reading
JoeY

Phlebotomy or Venipuncture And Multiple Sclerosis

We need to jump ahead into the present day, being October 2018.
I am treading on new ground, that my Endocrinologist, Neurologist GP, and Cancer Dr have not seen

the ancient art of blood letting,  or now called a Phlebotomy is used in only one disease.
I have primary progressive multiple sclerosis.  This is the USA term, phlebotomy.  Not was expecting another diagnosis, or was I looking for one.

This is being updated Aug 2020 for my UK audiences correction. 

Phlebotomy is the collection of blood by one of several methods. These methods include: 1) performing a finger puncture with a small lancet to let blood drain from capillaries, which is then collected into a very fine glass tube (capillary tube), a pediatric (microtainer) collection tube, or onto blotter paper; 2) a heel puncture, in lieu of a finger puncture, for neonates and infants; 3) venipuncture; and 4) arteriopuncture or arterial puncture.

Venipuncture, as it relates to phlebotomy, is using a needle to puncture a vein from which to collect blood into a syringe or evacuated tube. (Venipuncture can also be used to introduce into a vein a fluid, such as a medication or a contrast for radiology, but that falls outside the scope of phlebotomy.)

I have been on testosterone therapy for years now. A Endocrinologist was watching over me for also needing 150,000 iu a week of vitamin D to keep my numbers up.  She had taken me off testosterone, to do a MRI of the pituitary gland, to ensure no tumor. Nothing was found. It was difficult on the mind to cold stop testosterone, for anybody thinking of stopping.

My blood, I've always been told it's thick, or large cells. I could not get my testosterone level up. My hematocrit and hemoglobin has always ran high for years. My heart Dr said, while sitting, it's like MS always has me running a marathon.

Many EKG done by other doctors, because of excessive pulse and numbers.  but what I was not expecting was for the endocrinologist to send me to the cancer unit.

My Newest Dr was one at ease, saying it was the testosterone therapy causing thick blood. I told him endocrinologist said it was not. He agreed to run some tests. A DNA of the Jak2 gene, and others,

The JAK2 gene mutation test identifies whether there is a mutation on the JAK2 gene that could cause a myeloproliferative disorder. Polycythemia vera is one of the diseases with a high correlation with a JAK2 mutation.
Mine was negative, but my Iron was off the chart.

He then ran the HFE gene.  I have a great GP that also mentioned This gene. This consist of the C282Y and h63d gene.  I was given one gene from each parent, along with brothers and sisters, and going backwards thru family tree on both sides, to aunts, uncles, cousins, ect.

Hereditary hemochromatosis is present at birth. But, most people don't experience signs and symptoms until later in life — usually between the ages of 40 and 60 in men and after age 60 in women. Women are more likely to develop symptoms after menopause, when they no longer lose iron. My Neurologist niece was diagnosed at the age of 17.

But I have a Quite Rare type.

HEMOCHROMATOSIS DNA, RESULT Homozygous Mutant Negative A
Homozygous for the H63D mutation and negative for the C282Y mutation in the HFE gene. Five percent of C282Y
homozygotes and rare H63D homozygotes develop clinical symptoms. Genetic counseling is recommended.

So more research, and I find only one other person in ten years

 https://www.. .nlm.nih.gov/pmc/articles/PMC4071918
https://www.. .nlm.nih.gov/pmc/articles/PMC4071918/

So with Multiple Sclerosis, I now am dealing with weekly phlebotomy, to try to rid myself of iron overload symptoms. the Gene center told All blood relatives needed contacted, as hereditary.

My blood comes out as thick or thicker than pancake batter.

  I think more studies need done, as I can not be the only one with MS, and Iron overload. Iron also effects the pituitary gland, so that tells me it crosses the brain barrier.
 Would love to know if anybody else has this rare H63d Gene, doing  phlebotomy,  and has MS.  How it effects MS, or any articles found.

Thanks for reading
JoeY

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

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

Amazing Race

In the beginning episodes of the Amazing Race 2001, Before cell phones, Before DVDs, they had Video Cassette Recorder Cameras. Bulky, compared by today's standards. The Amazing Race around the World had just started in USA, hosted by Phil kohgen. The Winning team, would win 1 million dollars.

Both my health and My partner Wils health were excellent. Seeing the first two episodes, we decided to apply for Season #3. Our Race started with applying for passports. A Time limit of a three minute video, along with perhaps a twenty nine page interview needed filled out.  https://en.m.wikipedia.org/wiki/The_Amazing_Race

We had to apply for passports.
 Wils birth certificate, was taken from safe, old paper. The County would not take this. He had to have a new finagled one and pay for this, which meant a few hours trip to the state capital records to obtain. Mine, a old plastic card, issued in Alaska, was accepted. A phone call to a last old time employee days before retirement, knew they had issued cards for the few years when I was born.

Then to get all this with pictures, that only could be taken at county, in special paper, had to be sent in.
We took many takes to get a three minute video, On a old recorder that had a VHS tape bulky in, to tell the producer why we should be selected.

Pictures of our campsites, and others submitted to show our adventures, and why only should  choose us.  We were one of 25,000 entries.

In the beginning episodes, there were a Lot of food challenges. Wil told me I would get those, as I had such a great stomach for any type of food.

This would of been for episode number three.  The Top applications would of been flown to Los Angeles, for another interview, needing to have a month to race and travel.  What is not told, is from the hotel, if selected, you would be at Starting line.

Needless to say, we were not selected, were not flown to Los Angeles, but that was the beginning of many Amazing Races we would encounter.

 Not knowing in a few years, one Amazing Race would affect my health called Multiple Sclerosis, stopping everything in its track.

 Now we call it a Amazing Race for trips, or outings.

Thanks for reading
JoeY

Chostochrondritis, Heart Dr, Neurologist team

Costochondritis was a new word for me.  My upper torso on the front right side began to have non stop muscle spasms for fifteen days.  Since my Doctors were not around, I asked Bruce, my partners Dad.  He has been bed-ridden with RA for thirty some years. He was quite knowledgeable, as of having to go thru the pain of RA, and also knew computers inside and out, like he knew his body.

Some Ibuprofen was tried, which took the zaps, and calmed the spasms happening down. But when you have a muscle thumping, in leaves the area quite sore.  Upon seeing my GP, he confirmed Chostochrondritis, and 600-800 mg of ibuprofen was needed to stop this. 

 My other Nsaid,  Diclofenac, was being used for inflammation at other areas, and has no effect for Costochrondritis.  I had to ensure I used these Nsaids at different times.-------------------------------------------- 



I joined iconquerms. https://iconquerms.org.   and sent in a saliva sample for DNA testing
iConquerMS™ empowers all people living with MS to participate in research. Unlike other data-gathering programs, iConquerMS™ is governed and driven by people living with MS. 

A new GP, looks at me across the room, when I am describing my pain. He told me a Torn Rotator Cuff, and nothing they could do, and left. I was not thrilled with him, but figure he would not last long at the clinic, as they had gone thru many Doctors.

Another MS specialist from UC Davis became involved. A Neurologist, who would do thorough test on me every six months, or sooner if needed. I am one of many patients with MS she studies and lectures on. She also loved my notebook, and that I had all my blood tests, so they could be scanned in.  I would keep my Primary Neurologist, as such. She did not do Botox, and would be more of researcher in me.


  

A Dr from Sacramento Heart became involved as part of my team early on.   The Heart is a big muscle. And Yes,  MS can effect this from the beginning.  A EKG, and  echo was done as my pulse has always been high.  The Dr said, "it was like I was running a Marathon, even though my body was at rest. " This being caused by MS.  He did not want to slow me down, but ratherrather keep me able to do whatever I could.  A Mitro valve prolapse was seen, but not leaking.  This is part of what other Dr's heard, but needed a expert to see.
My heart was strong, and has not been effected by MS.  A yearly, or six month visit would be ongoing for years to come.

Thanks for reading
JoeY

Treatment

The treatment started with Copaxone injected daily in September 2012.

I had never needed pills or injections before. This is one of the Disease Modification therapies (DMT).  Copaxone,  (Glatiramer acetate) was chosen to try to slow my MS down.

Looking around the web, I found a young guy, named Matt Allen.  He has a blog I follow here :   http://mattsmultiplesclerosis.com

Matt also had a video, click here: Video of how to inject the Copaxone, as  Shared solutions, their company, did not have any video.  They were to send a nurse to my home to show me how to do this, but his video made me feel at ease, and led me to his blog.

Matt's  web site is quite detailed, and has explained his adventure with MS, and explains about MS.  His blog is always changing, and A great blog to follow since day one,

  Injections were easy for me, both manually and by their auto injector. The nurse was quite helpful, allowing me and my partner to learn injections, and sites, techniques, and practice, until ready.  I was skinny enough, that I did not need to change settings on the injector depth.   I am somewhere on the 2,880 th injection of copaxone daily as I write.  More on Copaxone in another blog.

But need to talk of Spasticity issues I was Having.


"Spasticity is a condition in which certain muscles are continuously contracted. This contraction causes stiffness or tightness of the muscles and can interfere with normal movement, speech and gait. Spasticity is usually caused by damage to the portion of the brain or spinal cord that controls voluntary movement. "

This was already a part of me since 2010. I quickly reached the Maximum amount of Baclofen, which is used to treat Spasticity.

By November 2012, my next treatment was with Botox.
 "Botulinum Toxin A"  injections went into into both calf muscles, neck and forehead by  My Neurologist.  He could feel which muscles were problem ones.

This was due to issues of cramping muscles caused by misfiring electrodes from my brain, going haywire, being caused by Multiple Sclerosis.  This had been going on for two years now, with stiffness, and foot lagging.  When I walked, I had to tell my foot to move forward.

Botox is only covered for every 90 days. After day 62-64 they botox wore off.  My Neurologist was trying to slow the progression down.  More in another blog.

He followed up with  VER test of eyes, and lower extremities. I did not do well on either test, but he needed a starting point to see progression, which was better than MRI, as it checked the speed of nerves from brain to toes in both sides.

Thanks for reading
JoeY