MS and Research logs

Some on line know me for research or blogs I have allowed scientist to pursue, On certain questions about MS that may be helpful. Others lead to more questions.  Above is a relative known as "White Peter" Google is a great starting point.

I am part of AllOFUS.ORG. AllOFUS.ORG, a research program , I may never see results in my lifetime, but was one of the first joining.

Patientslikeme.com  Patientslikeme.com was another research program, but they sold out all my information to United Health Group. So not sure where they are going now. They have a lot of history, snapshots of DNA over time, lab charts, and more. They are good at tracking every symptom, medicines, labs, and many conditions.

 I ConqureMS.com  iconqureMS.com is yet another company for research I answer questions for. They combine a lot of information, and you can upload your labs, so science can see.

 UBiome.com, has a lot of information about my gut issues. I was a test patient for them, sending in stool samples, getting reports back to share.  Their platform sent me to selfhacked.com, to understand information.  In 2019, they were busted by FEDS for insurance fraud billing. Got greedy. No more reports.

Last year at christmas, 2019, I did a VIOME.COM. VIOME.COM test of my gut bacteria.

 I also did a TELLMGEN.COM  DNA

TELLMGEN.COM test of my entire DNA, and to see how my prescription medications interact, Diseases it may pick up, and Research for them to do for quite sometime.


The TellmeGen goes into PHARMACOLOGICAL ACTION of different medicines that you use.  They have  your individual make up of DNA.  So the results will be different for everyone.

There is a lot of good reading, about interaction, RESEARCH STATUS, PHARMACOLOGICAL ACTION of many medicines on the market.  I gave them the specific list of twenty five medicines, so they could have their scientist see how I may metabolize them, and perhaps help future generations.  This I am sure will take time to analyze.  They have been great with email updates on questions I have asked.

I had a call the other week, from
BioMedical Insights, a health care consulting firm, and they were researching hereditary hemochromatosis on behalf of a client interested in treatment development.  They received their information from
Rare Patients Voice
  https://rarepatientvoice.com/EverchangingMS/
https://rarepatientvoice.com/EverchangingMS/

A recent study provided them with my contact info.  It provided a useful hour of talking about a new treatment. Think that's great!
It was a fun filled hour on a conference call, explaining My Rare H63d Genes that caused hereditary hemochromatosis, and a new drug treatment that could help thousands and thousands of people. Not a cure, but sounds promising for all.

Rare Patient Voice, LLC provides patients and caregivers with rare diseases an opportunity to voice their opinions through surveys and interviews to improve medical products and services. they will also send you a $5.00 gift certificate for joining, and a stipend for interviews qualified for.  I have seven conditions listed with them.  More information to come.

My GP, was kind enough for my request to learn about pharmegentics, as such a new field, FDA may not look into it for years. This I will talk about in another blog.

First I will talk about my most recent GUT test done by Viome.com

The Sample for my Gut was sent in December 26, 2019.  that generated a report of My Active Microbes.
Their are a lot listed, which I will have a dietician at UC Davis look at.  They also helped me with a food map, that my GI, wanted me on. This listed foods to Avoid, Super Foods, and foods to take in moderation with my Gut Condition that a microbe was taken of.

There were
SCORES TO FOCUS ON

Inflammatory Activity
Intestinal Barrier Health
Butyrate Production Pathways
LPS Biosynthesis Pathways
Putrescine Production Pathwaya
Oxalate Metabolism Pathways

SCORES THAT ARE GOOD
SCORES WITHIN RANGE

First was No Butyrates, or Probiotics were found.  That was a area that I could address with my GI Dr.   I am on linzess, lactulose, and metoclopramide to keep things flowing of constipation and Diarrhea. Perhaps the Gut Lining is needing a Boost.

"This score assesses the levels of activity of all microbial pathways that lead to the production of a beneficial nutrient - butyrate. Butyrate is a short-chain fatty acid known to beneficially affect many wellness areas from gut lining to insulin sensitivity and satiety (feeling full). A score that needs improvement means that your microbial butyrate production could really use a good boost! Individuals with low butyrate production activity would benefit from supplements or foods that either feed or add butyrate producing microbes into your gut ecosystem. "

This led me to What is leaky gut?

Leaky gut is a popular term used for increased intestinal permeability. This phenomenon occurs when the tight junctions of the intestinal walls become loose, which can allow harmful substances to enter the bloodstream. This means bacteria and toxins are able to “leak” through the intestinal wall more than normally expected.

I bought some Iberghast,  and a bottle of Vital nutrents  that contains: pancreatic 500mg and ox bile200mg ..protease 111k usp, amylase, 122k usp, lipade 17k usp

45 days later Viome gave me more recommendations.  I went over these with my GI dr. He said to try one at a time.
These consist of Berberine, mixed Polyphenols, Glutathione, Zinc Carnosine, probiotics strain Lactobacillus KE99,  probiotics strain L. reuteri DSM 17938, L. reuteri ATCC PTA 6475,  digestive support of Peppermint leaf extract, horse chestnut extract, quebracho extract, perilla extract, another probiotics strain Lactobacillus plantarum.

With my Multiple Sclerosis paying a huge part in my Gut, or perhaps the other way around, that the Gut is responsible for some of the Multiple Sclerosis.

I have not tried everything yet, some of it is cost related.

Zinc-carnosine is a unique product that appears to enhance the stomach's mucosal defenses, providing significant improvements in gastric ulcer patients. It also supports small intestinal mucosal integrity and inhibits the inflammatory responses in H. pylori.  I have been on regular zinc to keep colds away, without over reacting my immune system. Important for people with MS


Does L-glutamine work for IBS?  https://www.medicalnewstoday.com/articles/320850
https://www.medicalnewstoday.com/articles/320850

Berberine – A Powerful Supplement With Many Benefits
Berberine link to healthline.com. This one may help combat my high triglycerides, along with Vascepa I tak

https://www.healthline.com/nutrition/berberine-powerful-supplement#section4



Bile Acid Supplements May Ease Symptoms of Progressive MS

https://multiplesclerosisnewstoday.com/news-posts/2020/03/31/bile-acid-supplements-may-ease-inflammation-symptoms-progressive-ms

https://multiplesclerosisnewstoday.com/news-posts/2020/03/31/bile-acid-supplements-may-ease-inflammation-symptoms-progressive-ms

(MS) patients have lower than usual levels of molecules called bile acids circulating in their blood, a  study found. These molecules, produced in the liver to aid fat absorption in the gut, also appear to block inflammation and nerve cell damage in the brain.

Another step was looking  to the bile salts.

Product Information Butyraid 100 Tabs - Featuring butyric acid from the salts of calcium and magnesium, Nutricology ButyrAid is in an enterically-coated tablet designed to release in the small intestine. This short chain fatty acid is produced by certain probiotic bacteria and appears to support intestinal integrity

And as my GI told me, everything may be just going thru me daily. Something I need, so not to be costipated, but to have bowel movements without major straining. I do not understand alternating constipation and Diarrhea during bowel movement, and followed by three, then good for the day.  But better than having accidents, as I was before. Part of MS. Or the H63d Gene not allowing iron back into my system a year and a half later.

Had anybody tried any of the above?
Thank you for reading
JoeY

" QUALITY OF LIFE "

New Doctors, New Relatives, New Insurance, New Symptoms, all come with their own part of the Multiple Sclerosis Puzzle.  I stay anemic a year after phlebotomy. This is a unknown by the cancer specialists.

23and me has shown me a list of new relatives. Distant cousins from 4th great Grandparents, way down a family tree line.  But to be diagnosed in your seventies, that you have the same match of a H63d Gene, I have talked about that  puts you into iron overload.   Hereditary Hemochromatosis.
This alone was another piece of the puzzle on how many generations this has gone thru. Even the current generation seeing this problem, but with different eyes than those of past generations.  Even about same heart beats.

Another Gene showed up on 23andme.  HLA-DQB1.  This 23and me shows as a gene for celiac disease. But you have to dig in deeper in the Gene. Under the Government site,  Autoimmune diseases are listed. One being Multiple Sclerosis.
https://ghr.nlm.nih.gov/gene/HLA-DQB1#conditions.

I wonder how many scientist, or scholars can put all the pieces togeaather, including the vitamin D of 180,000 iu / week I need . (eighteen ten thousand iu pills)

A link I need to send to my Neurologist, but we talked about it. The session goes way to quickly with my Neurologist.  She was surprised that the soonest they can have more Botox on me is mid  February 2020. My calves and  neck stay tight as a knot. The last Botox was in August 2019.  My Botox Neurologist went on Medical Leave, just before my next injections were needed. This effected thousands of his patients.  I sent a few letters out because of the facts.

I scrambled for a New Doctor to inject Botox, and see if my UC Davis Neurologist would handle prescriptions. The  absence by my neurologist left thousands scrambling like myself.

Botox works for about 64 days with me, but loosens up the spasms in the neck and both calfs, which control the feet. This also controls thigh muscles higher.
The neck one keeps my buildging discs in place and relieves the entire muscle to the arm.

So I went into scrambled mode, and my Neurologist at UC Davis filled medicines, and got a referral to the Head Professor at UC Davis for Botox,  for the first available appointment being February for My partner and myself. He uses botox  for migraines.

My Clinic, I go to for seeing my GP, has usually been good. A Excellent GO, watched after me for a year, and decided to go back to school. This left them with no Dr.  A wording he used,  "It's the Quality of Life that matters " sticks with me everyday.  I had first seen him when they wanted to do surgery on my neck for two herniated discs.  Was the pain jabbing me in my back and down to my fingers being Caused by The pinched nerve, or was it caused by MS?

The Head of the clinic Dr, came to keep track of me and medicines for about three months.  A Gracious Man, wanting to learn. He talked highly of the new Dr they hired.

 The following month, Dr X, stood across the room and accused me of not taking my meds, as my blood pressure was high (pain related).  Then he states, " I do not prescribe Lyrica, as that is a Dangerous Drug"  he states that a few times. This is one of my least dangerous medicines, for those  that take MS meds, many are black box warning meds are used, that  Makes lyrica look like asprin in comparison. You have to outweigh the positive effects against the negative effects, and each medicine works different. He did not attempt to touch me to see the pain, or listen to my heart, or recheck my blood pressure.  This was by far, the worst treatment I have had with a Doctor.

Note :  lyrica and Cymbalta are used to control pain in MS, and a GP should know that by reading .  Hyaluronic Acid from England, and chondroitin Sulfate has eased my neck issues, talked about with my Neurologist.

Not all patients are a good fit for a Dr, or is all Doctors a good fit for patients.

But On a Good Side, I got Dr. T. at UC Davis to be my GP. A residence, so for six months, but he studied all the notes from each specialists, and spent two hours with me, making sure "The Quality of Life" is my goal to keep.

But changes happen. Insurance companies started to buy each other out, including your local small pharmacist in the background over the years. CVS Pharmacy became so big, they bought Aetna out. The government stepped in, and put a stop, saying they got to big, sell off your drug plan.  So Wellcare bought them, eliminating drugs and doubling rates.  Consumer Reports has a great article drug-prices/the-shocking-rise-of-prescription-drug-prices

So a new company for my Drug Plan, with the help of  Director of the Area12.org.   https://www.area12.org/ to find, so most of my drugs would be On the plan. I am sure my Drs will have to pull out all stops to ensure I am on medicines needed, with Prior Authorization, and Medical necessity, and some perfect language.

Yet, another change happened, after my Partner injected Copaxone into my arm. Thought it was only a blood vessel he hit, so not much thought. But the bruise under the skin became larger, the crusting taking over slowly.  Three weeks later, I showed my Neurologist, who had her nurse look at it.

 She named off a long word, but it means the destruction of the skin, by the copaxone itself. Some need surgery done.
Feeling my arms, there is no fat to inject the copaxone into. So the arms are off limits. She had me call the Copaxone Nurse also, who came to see me at my house.

I had not seen her since starting Copaxone. She agreed, arms, no fat to inject into. My thighs, so tight without botox, only a small area left. My sides, nearer the back on small area, as other  injection site have become tough skin. The 1Stomach, because of my GI problems, was not bloated, but little fat, and some areas to stay away from.

So that will limit Copaxone injections in six months, or a year?

For those Scientists and researchers reading this, I asked the nurse, "Copaxone is made of a few amino acids.  What if you were to mix them into a smoothie? , instead of injections?". Makes sense to me, as I can buy all these amino acids from the store as a pill. Would you need some oil, and cook it into eggs?  I asked Copaxone the same question to ponder.

for my technical people:
"Copaxone Description:

Glatiramer acetate, the active ingredient of Copaxone, consists of the acetate salts of synthetic polypeptides, containing four naturally occurring amino acids: L-glutamic acid, L-alanine, L-tyrosine, and L-lysine with an average molar fraction of 0.141, 0.427, 0.095, and 0.338, respectively. The average molecular weight of glatiramer acetate is 5,000 – 9,000 daltons. Glatiramer acetate is identified by specific antibodies.

Chemically, glatiramer acetate is designated L-glutamic acid polymer with L-alanine, L-lysine and L-tyrosine, acetate (salt). Its structural formula is:

(Glu, Ala, Lys, Tyr)x●xCH3COOH

(C5H9NO4●C3H7NO2●C6H14N2O2●C9H11NO3)x●xC2H4O2

CAS - 147245-92-9

Copaxone is a clear, colorless to slightly yellow, sterile, nonpyrogenic solution for subcutaneous injection. Each 1 mL of Copaxone solution contains 20 mg or 40 mg of glatiramer acetate and the following inactive ingredient: 40 mg of mannitol. The pH of the solutions is approximately 5.5 to 7.0. The biological activity of glatiramer acetate is determined by its ability to block the induction of experimental autoimmune encephalomyelitis (EAE) in mice.

Copaxone - Clinical Pharmacology"

So I expect more hickups along the way, perhaps some will help me more, like Ampyra name brand, https://ampyra.com/ has helped my walking,  but might not be right for everyone.

Cheers and thanks for Reading. Would love feedback.

Joey