SANO and Multiple Sclerosis a some of my DNA

Multiple Sclerosis

Complexity Level:Complex

mid

Heritability- medium -48% - 64%

Multiple Sclerosis (MS) is a rare autoimmune condition, caused by a body’s own immune system attacking its central nervous system.

A quick note: this article is not intended as diagnosis or treatment advice.

As well as the genes covered here, around 200 more have also been found to contribute to MS, along with environmental factors, so this is very far from being a full picture of your risk level.

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Different variations in some of the HLA* family of genes and certain T-cell related genes have been found to relate to different levels of risk.

HIGHER RISK

LOWER RISK

rs3135388

TC

effect:3Higher risk

rs4959039

AG

effect:1.4Higher risk

rs6897932

CC

effect:1.08Higher risk

rs2104286

GA

effect:1.4Higher risk

*Read on for more detail on exactly how these genes and environmental factors like vitamin D deficiency affect MS risk.

This is my Data from SanoGenetics.com. Quite a interesting read. They picked up my Data from 23andme.com, so not a complete set of DNA used.  I have asked their permission to use this page in my blog,  as this information may help scientist and researchers.  Tellmegen.com has a  complete set of my DNA, along with Allofus.org

Vitamin D may also play a role in MS. A detailed report is available by emailing me, as I will retest to see if some items Tellmegen.com has shown interferes or not with vitamin D. 

JoeY
                     A song that I thought would fit this DNA from yester year

Time in a bottle plus the classic Sound of silence

TURKMENISTAN - WHY ARE THE STREETS SO EMPTY?

This report covers several of the genes known to play a role in Multiple Sclerosis (MS). This article is not intended as a diagnosis or to provide treatment advice, but as an educational and informational tool that is personalised to your genetic data. Beyond the genes covered here, there are around 200 genes which have been identified that also contribute to MS. Non-genetic factors such as Vitamin D also play a role in MS, and are explored in this report .

What is Multiple Sclerosis?

Multiple Sclerosis (MS) is a rare autoimmune condition which is caused by the body’s own immune system attacking its central nervous system .

It is characterized by a wide variety of symptoms including problems with vision, movement and speech .

The risk of developing MS is influenced by many factors including genetics. Several genes have been identified in influencing the development of MS, many of which regulate the immune system.

Which genes influence a person's possible development of Multiple Sclerosis?

The Human Leukocyte Antigen (HLA) is a family of MS related genes that make a group of proteins called the HLA complex which plays a role in helping immune cells communicate with each other. The HLA complex helps the immune system to differentiate between foreign attackers (e.g. bacteria or viruses) and the body's own tissues. In MS, the immune system is unable to distinguish between the body's own tissues and a foreign attacker due to a miscommunication between immune cells.

Different variations of HLA genes have been found to relate to the risk of developing MS. Two of those variations are HLA-DRB1 (rs3135388) and HLA-G (rs4959039). Allele rs3135388(T) in HLA-DRB1 has been associated with a 3 to 6-fold higher risk of developing MS.

SNP rs3135388

You have the variant TC at position rs3135388. You have about a 3 times higher risk, than the average person, of developing Multiple Sclerosis.

Allele rs4959039(G) in HLA-G has shown to be associated with around a 2-fold higher risk for developing MS.

SNP rs4959039

You have the variant AG at position rs4959039. You have about a 1.4 times higher risk, than the average person, of developing Multiple Sclerosis.

What environmental factors influence a person's chances of developing Multiple Sclerosis?

One of the environmental factors which has been linked to the development of MS is vitamin D deficiency. People with MS have lower levels of 25-hydroxyvitamin D3 (25-OHD3) in their bodies. Research suggests that increasing Vitamin D levels in people with a predisposition to developing MS may reduce risk of developing the condition.

In the kidney, skin and immune cells, 25-OHD3 is processed and activated by a gene called CYP27B1. This means that the final level of active vitamin D3 is dependent not just on Vitamin D levels, which is influenced by factors such as sun exposure and diet, but also genetic factors in the CYP27B1 gene.

Low levels of CYP27B1 will likely influence the available amount of active vitamin D3 present in the body. As a result, studies have shown that Individuals with allele rs703842 (T), which is correlated with lower levels of CYP27B1, are on average more likely to be affected by MS.

SNP rs703842

You have the variant TT at position rs703842. This variant is associated with an increased risk of developing Multiple Sclerosis.

What are T cells and what role do they play in developing Multiple Sclerosis?

The IL7RA gene produces a protein that participates in immune system response and in T cell (a type of immune cell) development. Some genetic variants in IL7RA result in decreased protein levels. It has been shown that carriers of the allele rs6897932 (C) produce less IL7RA, and people with allele rs6897932 (C;C) have about 2 fold higher risk for MS development. On the other hand, the (C;T) and (T;T) variants are associated with protection against MS.

SNP rs6897932

You have the variant CC at position rs6897932. This variant is associated with an 1.08 times higher risk, than the average person, of developing Multiple Sclerosis.

T Cells, mentioned previously, are an important part of our body's immune system and are involved in ‘adaptive immunity’, which includes a system for remembering past threats and responding to those threats when they occur again. MS, like many autoimmune diseases, is in part the result of T Cells not functioning correctly, and attacking the bodies own cells.

IL2RA produces a protein that is involved in T-Cell growth, and genetic variants in IL2RA are associated with MS risk. The rs2104286 (A) allele is associated with a higher risk of MS, while the rs2104286 (G;G) allele is associated with lower MS risk. One of the FDA-approved treatments for MS, daclizumab, works by blocking IL2RA.

In conclusion

There are around 200 genes which could influence a person’s development of Multiple Sclerosis, many of which regulate the immune system. Some genes may increase or decrease the risk of developing MS directly, whereas others may increase or decrease the risk of associated conditions such as vitamin D deficiency that can influence a person's likelihood of developing MS. However, genetics is just a small factor among many other factors (including environmental, immunologic and infectious factors) which influence a persons likelihood of developing MS.

Research into immunology, epidemiology, genetics and infectious agents is essential to increase our understanding of the causes of MS as well as helping to discover more effective treatments.

References

[1]National MS Society: What Causes MS?

[2]Mayo Clinic: Multiple Sclerosis

[3]Sano Genetics: Multiple Sclerosis

Glossary

[Environmental Factors]

Environmental factors are external influences that can affect an individual's health and wellbeing.

[Immune System]

The organs and processes of the body that provide resistance to infection and toxins.

[Immunological]

Relating to the structure and function of the immune system

[Infectious Agents]

Is generally used to describe and encompass any material that can cause an infection that can lead to a disease. There are four main classes of infectious agents: bacteria, viruses, fungi, and parasites.

[Protein]

Proteins are large, complex molecules that play many critical roles in the body.

[SNP]

SNP stands for 'single nucleotide polymorphism' and refers to regions of DNA that vary

Sano home

But even more DNA using  DNA from tellmegen.com

rs10492972       AG (or TC if reading the complementary DNA strand))                     G (or C) is the risk allele

KIF1B gene              conflicting reports; possible slight increased risk for multiple sclerosis

rs12722489     IL2RA gene    AG                   a slight increase in risk of developing multiple sclerosis      G is the risk allele

rs6498169        AG       KIAA0350 gene   1.14x risk of multiple sclerosis          A is the risk allele

rs10984447    AG        DBC1 gene        1.17x increased risk for multiple sclerosis    A is the risk allele

rs12044852   AC         CD58                  1.24X risk           C is the risk allele

rs12708716    AA       CLEC16A       1.6x risk of type-1 diabetes and other autoimmune diseases (such as MS)          A is the risk allele

rs4149584     GG        TNFRSF1A       normal risk           A is the risk allele

rs3135388     AG (or TC)      HLA-DRA          3x higher risk of multiple sclerosis                 A (or T) is the risk allele

Mindfulness and Multiple Sclerosis

Two of my newest Doctors I added to my team are from US Davis Pain Management.

Low Dose Naltrexone   LDN was mentioned to look into.  I am still pursuing this, and have looked at some interesting data. would love to know about others using this with ms.

  Let me  hear of people's experience with this ldn, and the  home compounding sounds much more affordable, as then you could zoom into the proper doseage, instead of using a compounding pharmacy, for those inclined to make items.

I was in a Trial using real Biotin in large diseases (vitamin b7)  I found myself measuring precise amounts of a pure white pure Biotin powder daily, with a precision scale. I had to stop trial early due to thick blood from H63D genes they found by endocrinologist, as biotin was used in one of the test on thyroid glands. I was referred to the cancer center.

The Cancer Dr found the HFE gene, two H63d genes mutated, causing Iron overload. I have for 17 phlebotomy done.
https://rarepatientvoice.com/everchangingms/ is a good starting point for Rare diseases, or any. They do paid studies for research.

I make my own Quinine, to obtain 22 mg per serving, to help muscle spasms.  So this process of compounding Naltrexone 50 mg into 50 mgl of water sounds quite simple.

I am currently on about twenty five medicines.  A Sharp pain in My back and zapping thru My fingers brought me to these new Drs, from My GP.  I was inbetween Botox injections into My neck muscles and calf muscles in both legs. They had not happened for six months.

The Head Professor, at UC Davis  who injects the Botox was still a month away. My last Neurologist took a medical leave of absence, so It had been six months to get into the expert, and this Dr was the expert.

 The New Dr, had a student with him. A guided computer to help show how deep and into the muscles, the botox needle needed to go.  The needle  which was about three inches long  was effortlessly injected, as the muscle names flew softly from the professor, as I heard the machines crackling sounds diminish as injections were happening, some deep, some shallow. Some requiring more botox, as the needles he had were pre loaded with Botox. My calves and both sides of my neck were done.

I do miss My old Neurologist, and his small staff.   He had a lot of knowledge, and our discussions were always worthwhile, with my notebook full of questions. His scrybles, deciphered only by a few, shows My eight years of history with him. Some notes transcribed.  I do hope to see him lecturing somewhere on the circuit to ask him questions. He was a old timer, without the need for a computer, with a office full of papers, and a staff of two. One gal made appointment the old way in a book with pencil she had folder of Drs notes, and prescriptions written out.

 My online pharmacy, did not like their fax. Refused, and would leave messages for Dr at 2am. I finally found a way around this, as this was creating too much work to keep refaxing, and time talking to them.  On my part was a good hour every refill, for days on end. Drs office, was even more frustrated.  The Fax Machine, huge size for medical office, did not talk to the upgraded Hal 2001 , which was now standard for insurance companies. This generated computer errors, and call backs, but no human could fix, or know that was the problem, or relay such.

My fix, was to mail in the Drs prescriptions. That old fashion step got me My meds prescribed.


Now into new Drs...  The Botox helps tremedously. I look forward to it, kind of a oxymoron, but that's how some of the pain gets relief from.

                                               Guided computer for Botox

My other Dr is into mindful meditation.

I hope to keep adding to this page with your help of links, youtube, and others to try.

He has a MBCT  class in August, but it's now going to be virtual, due to covid-19.  Matthew is trying to get me in, but for now, here are some links I have found.


LDN
https://ldnresearchtrust.org/what-is-low-dose-naltrexone-ldn

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3962576/

How to be your own compounding pharmacy directions
https://altarp.com/how-to-prepare-low-dose-naltrexone-ldn/

Search Facebook for LDN

Other groups
Facebook private group on interested Clementine Fumarate
Clemastine Fumarate / Metformin / Off Label Drugs For Multiple Sclerosis
https://www.facebook.com/groups/699183567291955/

MINDFULL MEDITATION

I was first introduced to this from Lindsay Wagner, https://lindsaywagner.com/
 who played the Bionic Woman.  My Partner, Wil, is a big fan of hers, and Wil  has a few of her look alike dolls in his collection from the Bionic Woman.

We went down to Monterey, CA. For a seminar on mindful meditation. It was held in Monterey. Wil found a unbelievable deal and instantly booked a great  deal for a weekend at  the
 ASILOMAR CONFERENCE GROUNDS. https://www.visitasilomar.com/  We had a building to ourselves, and the ocean right there. Work didn't matter, as we put in for the days off regardless. We made our own food, so not to disturb conference they had.

This is when I was being  mid diagnosed with Crips. Chronic Regional Pain Syndrome

Lindsay was in Monterey, just minutes away from Asilomar.   A quite quaint Expensive Town, that you will feel out of place in without name brand expensive apparel on.

We sat front row, perhaps the only two guys, but standing room only before she came out in a flowing soft cotton outfit.

The year was 2011
We bought her CD ,
Lindsay Wagner on "Quiet the Mind and Open the Heart."

lindsaywagner.com

https://m.youtube.com/watch?v=1yX8ePlf-Pk


https://www.pinterest.com/pin/533676624567062205/https://www.pinterest.com/pin/533676624567062205/


https://www.elevatedexistence.com/the-bionic-woman-lindsay-wagner-talks-meditation-holistic-healing-and-shifting-perspective/


Other mindfulness sites of interest
https://healthstoriesproject.com/5-self-care-tips-for-chronic-illness/

https://palousemindfulness.com/MBSR/week0.html

The MS Trust has a few to start with.
https://www.mstrust.org.uk/a-z/mindfulness


I have been invited to join a study group put on by the University of Washington on MBCT, or CBT training, or by the flip of a coin, just a care group for eight weeks.
This is funded thru the National Multiple Sclerosis Society.

https://www.nationalmssociety.org/About-the-Society/News/MS-Trial-Alert-Investigators-Recruiting-People-wit

https://multiplesclerosisnewstoday.com/2019/01/31/ms-patients-sought-test-alternative-chronic-pain-treatment-methods/

I asked them specific questions my new Drs had, of continued appointments with them, and joining their group in August, overlapping the study.  The Dr I spoke to in Washington, did not see it as a problem doing the MBCT training at UC Davis also. The parameters.

This will all be by zoom platform, University of Washington platform, phone and email, with 6-7 per group. A Total of 240 participants, with 80 for MBCT training, 80 CBT training and 80 in care group...no help.  So hope to have coin flip for MCBT.  July 29-Sept 16, with follow ups.. Meeting two hours weekly.

Eyes, Optic Neuritis,

My actual eye

A visual of my Eye.  I have a great team of Drs put together for Multiple Sclerosis. These include a ophthalmologist, with state of the art equipment.   A Optometrist who looks at my nerves, diseases, eyes of course, muscles that control the eye are looked at by both.  A Team at UC Davis specialist, and GP help in all other areas to keep The Quality of life.

 The optometrist can write a script for new glasses, while the ophthalmologist is more eye surgery, cataract,  and comes up from his city office on a Saturday to check on people in My remote community.

My optometrist is still a long drive away to get to, but spends extra time looking at my eyes, and double vision to try to correct with prisms in glasses.  I wear two pair, one for reading and writing this blog, the other for distance, or what is my new distance.

I can change eye glasses a few times a week, on how prescription changes. This is due to Multiple Sclerosis, and how it effects the nerves of the eye, and muscles that accurately positions the eye for precision items. Also is involved is the nerves, and how they relay the message the send to the brain, to be interpreted.

In 2017 optic neuritis, a popular event that can pre-precede  multiple sclerosis, was my buddy for a while.   Cotton balls on end of nerves. Some missing spots I knew was missing from my vision field, some pain, but I am on so many medicines, I probably do not feel the pain as much.  

This year, a eye lash stuck in My eye, and for how long? Did not feel it, or the time spent to have it removed.  Knew My vision changed, and My eyes would fire easily. 

My notes, looking back, can provide a helpful use of valuable information, as I kept.  In December 2017, I was prescribed oral steroids from my GP, for symptoms he saw, trying to help me relieve symptoms.Joe

I saw my optometrist that month also.  Cotton Balls seen at the end of my Eye nerves.  I sent the report to my neurologist, and she quickly put in a order for IV Steroids.

Middle of the month, My Neurologist, prescribed five days of IV Methapredisone, or known as soul medrol.  The local bandage hospital up here, had a huge problem with this simple task, stretching it out to seven days. A hour procedure taking four hours. 

Then came a MRI.  the Spinal Doctor, found two herniated discs that were found impeding on the nerves. It was producing a stabbing in my right shoulder blade (a prior Dr, who I do not see,  told me it was a torn rotator cuff, and was going to do nothing, except stand on other side of room).   

I was sent to a specialized Surgeon, and injected 80 mg prednisone into neck cavity day after Christmas, to relieve pain.   This did nothing.

Botox injections had only lasted me 52 days this time around, and I was due for another round.  The Neurologist saw the muscles in spasms in the neck. Injecting deep into the muscles and other muscle groups gave me relief I felt, without the back jab, or electrical waves going thru my fingers.

I was glad No optic Neuritus going on for 2020 at this time.  

 I have The two Genes for Age-related macular degeneration (AMD). It is the most common cause of irreversible vision loss among older adults. The disease results in damage to the central part of the retina (the macula), impairing vision needed for reading, driving, or even recognizing faces. This test includes the two most common variants associated with an increased risk of developing the condition.  No sign of this going on.   

Some cataracts growing, means no more IV Steroids, as they do more damage than good.  I will have to ask for Acthar next time.

https://www.actharmsattack.com/

 The optometrist spent time with me, sending me my Eye pictures, and Retna Thickness. Something perhaps by age, or perhaps related to Multiple Sclerosis. Neurologist was studying this aspect of thickness. Perhaps only me being studied?

Wonder if a Study of the thickness of the Retina has ever been done in respect to Multiple Sclerosis, as a point of interest.   The New technology allows for learning a lot of eye information.

I would love to hear about your eye exams

Stay safe 

Joey

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