Ever Changing MS: September 2020

Friday, September 25, 2020

Multiple Sclerosis and IBC

Multiple Sclerosis has many aspects. Some items people do not want to talk about, such as constipation or Diarrhea. My partner found a helpful solution, not to solve the ongoing problem, but one to help in the bathroom.

Most Guys would never think of using a bidet, and think they are only made for women, and a special toilet bidet needed installed. This is not the case, and this gadget I have found to be one of the best. It can be made for a man or woman. It can be heated, or unheated. Many versions.

This one hooks right up to your existing toilet.

Bathroom Luxury Meets Eco-Friendly

I was skeptical, but had mentioned one for my birthday to my Partner. A type of unexpected present for our home we call the Treehouse. This Winter I may be going WOW with cooler water!

A easy installation, and wonder why they are not being used everywhere.

It saves toilet paper, as all you are doing is patting yourself dry. We will have hand towels next to the bathtub shortly for just this purpose.

since we live are remote, and on a well, and septic, this will help our system tremendously.

https://luxebidet.com/ref/JoeY/

I am always looking for answeres or help.

Pathways to bowel or bladder dysfunction are common with Multiple Sclerosis. I read many blogs about this on https://irritablebowelsyndrome.net the newest

https://irritablebowelsyndrome.net/living/wasted-time/

https://multiplesclerosis.net/living-with-ms/digestive-problems-diarrhea-embarrassing

Yet another great link!

I did find Most Multiple Sclerosis people are low in Bile Production.

Thus the alternating constipation or Diarrhea

I found this government paper on

Butyric acid in irritable bowel syndrome

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4027835/

"a group of short-chain fatty acids and is thought to play several beneficial roles in the gastrointestinal tract."

These symptoms people have cross over from Multiple Sclerosis to daily people. One report said one in six people live with IBS. Sometimes caused by food we eat, or diets we try.

I am being a scientist with the help of a great GI Dr, his MD assistant, and a Wonderful Endocrinologist.

I run a list of what I have found doing research on products. This is not something I would recommend anybody doing, without talking to their specialists.

Since being diagnosed with IBC-C, bowel problems run in the family from diverculitis, to bowel issues, and generation before me having some type of bowel issues.

My GI has me on Linzess, A powerful medication. That I use with lactulose 50-90 mil to provide relief. Simethicone is used for the Bloat.

Ox Bile was tried, colon lining nutrition of calcium butyrate, magnesium butyrate, and butric acid. Digestive support Pancreatin of Amylase, for carbohydrate digesting, protease, for protein digesting, and lipase, for fat digesting enzymes.

Sodium Butyrate Bodybio.com had butric acid, which is a medium chain triglyceride MCT. It provided microbiome support, improved digestion, healthy metabolism.

Also on my regimine is Ceylon Cinnamon.Horbaach.com It is known as the true cinnamon. Used for supporting healthy weight, heart, circulatory, and joint health. Blood Sugars it also helps maintain.

My Heart Dr put me on Vascepa, Vascepa.com for high Tryglicerides. Berberine is also taken.

I take vitamin D. People with MS are low in vitamin D, but have your blood work checked by a Endocrinologist before starting, and monitored.

I have a new list I went over with my specialist, some amino acids, some mushrooms, some minerals to help digestion, and restoration sleep. The Dangers of some supplements that contain Griffionia Simplicofola seeds known as Hydroxtryptophan or "5HTP", as serotonin overload syndrome can occur due to other MS medicine I am on.

A warning that all supplements are not the same, or some may be low quality, or not even have what is listed in it. Wal-Mart, Walgreens, GNC all got in trouble years ago.

I try one at a time, make notes for few weeks. May try a combo that works better. Research the manufacture. I will have to make a second blog, on the next set of supplements, and which ones worked for me.

Let me know of ones I may be missing, or companies can send me a sample by emailing me for address

One of my stories was just published in irritablebowelsyndrom

https://irritablebowelsyndrome.net/stories/ibs-ms/

Thanks for reading, stay safe.

JoeY

Sunday, September 6, 2020

H63D/H63D genes and MS

https://youtu.be/rnKbImRPhTE?list=RDrnKbImRPhTE

For those who want the background music.

Multiple Sclerosis and having H63D H63D genes

Yes, A autoimmune story that requires a lot of research.

I find that I fall into the less than 5% that have the two copies of the H63D genes that cause Iron overload. It began a few years back, when my endocrinologist was not obtaining lab results that she wanted. I have been on Testosterone Therapy since the beginning of my multiple sclerosis

Most people with MS have a deficiency of vitamin D, and also, Testosterone, and yet another one I found... Low Bile Acids, which I will have to talk about later.

My Vitamin D was in ricketts stage when it was checked. I now stay in the #80's range, to be high for neurologist, but low enough not to get calcium in blood.

My pituitary Gland had a MRI done. This meant I had to get off the real Biotin trial I was on for eight months, and give up Testosterone for six months. The Testosterone is hard to quit cold turkey.

But this still showed abnormal blood results, thus I was referred to the Cancer Clinic. The first Was, its caused by testosterone. I told him no, and he agreed for more testing. The first DNA, came back normal.

A Good GO, was my primary, and he mentioned the H633D Dna test. Right track, as that is what my cancer Dr ordered. The test came back with two mutated copies of the H63D gene, causing me have Haemochromatosis

17 phlebotomies, or for my UK readers, veins punctures to drain blood from me

It came out as thick as pancake batter.

Nord was joined.

https://rarediseases.org/

I joined Rare Patients Voice

https://rarepatientvoice.com/

in USA, I had only found eight others with who had iron overload caused by the gene Mutation. They provide paid surveys for researchers, and anybody to join

I went back on my mothers side to a fourth grandparent and down that line, when a fith cousin responded. He was 74 years old, but Dr had him on blood thinners. His 23andme data showed the H63D gene. His Dr confirmed Haemochromatosis, and with the double H63D gene.

Now I know the one side of family link being passed on by generations. Do not know the other side, though. A Multiple Sclerosis Mystery also. Sanyogenetics.com Sanogenetics.com has my DNA, which has many MS genes it points to in a earlier blog.

H63D & S65C ~ The Forgotten HFE (Haemochromatosis) Mutations

Private group on Facebook was found earlier this year.

https://m.facebook.com/groups/2309415149302702/

This led to a lot more research.

Checkiron.com

Youtube up to date info on CHECK IRON

Using this research tool, it allowed me to find another gene, The pro589Ser.

"Risk Score for HH Type 1 is 7.9

Coverage 42.46% for 23andMe

You are homozygous H63D which causes iron overload in 5.4% of cases but this is strongly increased by the Pro570Ser mutation.

H63D Two copies of H63D, 5.4% chance of iron overloadHFErs1049296(CT)3Pro570Ser - risk allele: T (Pro589Ser) This is called TF C2. It creates an increased likelihood of iron loading when combined with any c282y and h63d because it forces a reduced TIBC resulting in higher levels of free iron and free radicals. This also Increases susceptibility to Alzheimer's disease but only when combined with c282y."

My info, so I do not loose

http://checkiron.com/ci/resultsMV2.jsp?id=aeb2f92e034f413fa35f9e60d19ab533#home

Made for interesting research, as other genes were looked at. Wonder if they could add auto immune diseases, like find... but Sanogenetics is covering this.

A find that my Endocrinologist thanked me for.

I Still have MS, with its daily tolls, and unknowns. Botox was increased from 300 units to 500 units, trying to keep my spastic muscles that are overly stimulated by my MS. Many muscles In the calf and into the neck region. All guided by computer rhythm, but more by the professor neurologist that knows the name of each muscle, and what they control. I can feel when he hits the deep muscle that is hard as a rock. This keeps me mobile with a cane.

https://rarepatientvoice.com/EverchangingMS/

Than you for reading. Hope some of these links will be helpful