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
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
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