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Wednesday, December 19, 2018

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

Wednesday, December 12, 2018

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

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