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Showing posts with label H63D gene. Show all posts
Showing posts with label H63D gene. Show all posts

Friday, November 6, 2020

MS, H63D Hemochromatosis Are Associated with Primary Hypertriglyceridemia




Hypertriglyceridemia the thought of the day.

 The association with Multiple Sclerosis, the H63D gene mutations, and what it is.

high level of a certain type of fat (triglycerides) in the blood.
  • Treatable by a medical professional
  • Requires a medical diagnosis
  • Lab tests or imaging always required
  • Chronic: can last for years or be lifelong
Elevated triglycerides may contribute to many items,  much to many to get people excited without blood tests, and talk about in this blog.  My next blood tests are at the end of the year, followed up in January 2021 by a endocrinologist, my cancer Doctor, GP, and heart Dr., along with others.

Most people with elevated triglycerides experience no symptoms.


https://academic.oup.com/jcem/article/94/11/4391/2596710


Mutations in HFE Causing Hemochromatosis Are Associated with Primary Hypertriglyceridemia

My Journey through Hypertriglyceridemia goes on for years now. When the levels of Iron were extremely high the summer of 2018, my tryglicerides were also in the Hypertriglyceridemia stage. The inter relationship of this and high iron , Hemochromatosis, caused by the the gene mutations of both H63D genes, is quite rare, and listed in rare diseases.

When my first thru seventeen phlebotomy or vein puncture were done to remove blood from me weekly, that started October 2018, my mind set was on the rare H63d genes involved, and the iron.

My Tryglicerides dropped in half after the phlebotomy, or vein punctures were done early 2019.  But that still left me with Hypertriglyceridemia going on.  My Heart Dr tried a drug known as Fenofibrate with me. Since the Heart is a muscle, and can be affected by multiple Sclerosis, he has been thru me on this entire journey as part of my "MD Team"

For those now curious, my heart Has always been fine. EKG done many times by many Drs. A Echo of the heart is done yearly, always looking good.  My Cholesterol levels looks great. My Heart Races like I am in a Marathon, even if sitting still. This is caused by MS.

I use a app, my heart or blood pressure designed by 

Http:www/Klimaszewski.mobi

Great app. I use a cuff on arm to put data into this App, or data from different Drs gives me many results. Shows when I was put on a heart pill, to lower readings, and data back many years. Of highs and lows.  This shows a GP not giving me a EKG, and his report even shows how high. It was my first and last appointment with him.


The Fenofibrate I became extremely allergic to. I was one of less than 3% that had a negative reaction, being caught by my Endocrinologist. Three days off, dropped my readings. Vascepa was the next Medicine to try by my Heart Dr.  This is like taking 34 omega 3 fish oil pills, but put into each 1 Gram Pill. 4 Grams daily. No fishy taste or burps.
But is supposed to help tryglicerides.

My Cholesterol is normal.

Berberine hcl, and Taurine, red yeast rice, CoQ10, along with other natural substances are supposed to help. I would check with your Dr before trying anything I have listed, as I am not a Dr.

H63D & S65C ~ The Forgotten HFE (Haemochromatosis) Mutations
Private group on Facebook is a great source of information.





Medications used in the management of hypertriglyceridemia include the following:

Fibric acid derivatives (eg, gemfibrozil, fenofibrate)

Niacin (slow-release, immediate-release, extended-release formulations)

Omega-3 fatty acids (eg, icosapent, omega-3-acid ethyl esters)

HMG-CoA reductase inhibitors (eg, atorvastatin, fluvastatin, pitavastatin, pravastatin, lovastatin, simvastatin, rosuvastatin)


The diagnosis is made on blood tests, often performed as part of screening. Once diagnosed, other blood tests are usually required to determine whether the raised triglyceride level is caused by other underlying disorders ("secondary hypertriglyceridemia") or whether no such underlying cause exists ("primary hypertriglyceridaemia"). There is a hereditary predisposition to both primary and secondary hypertriglyceridemia.[1]

Sending me notes or any info on tryglicerides will always be helpful. This is a gene handed down generations ago.

H63d/H63d means I will always be watched for iron. The tryglicerides connection is something newly found, and other members have chimed in stating the same.


Thanks for reading 
Joey

Tuesday, June 16, 2020

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.


Saturday, May 9, 2020

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

Tuesday, January 14, 2020

Changes

This last year went by quickly. Way to quickly.
Changed happening, seems like daily since  mid 2019. Guess that's why I named this blog everchangingms.blogspot.com

A quick change of Doctors was needed. My Neurologist that injects me with botox went on medical leave in November, having me scramble to obtain meds prescribed, and a new person to administer Botox. This won't happen until February 2020, as how busy  Specialized Neurologist are. So dealing with Charlie horses, cramps, stiffness and neck spasms.  The quinine works wonders, but limit its use. I think the neck spasms are upsetting the degenerative did disease.

Then came my GP. Highly recommended by the main Dr at the clinic, who was watching over me until he had a new Dr hired. I had entered with extremely high hopes.

Some Drs are not made for patients, or some patients not made for Drs.  I let him give his talk, with my blood pressure  rising even higher, as what he was saying, never touched or examined me.

The most frustrated I have ever been. He should of had my heart rechecked, as knew extremely high entering. He left in huffiness.  I then left, almost in tears, not making another monthly visit.

But then good news, was I was able to get a  new GP who actually took the time to read all my specialist reports.  He is doing his internship at UC Davis  He Looked at blood levels, and re ordered some that were in concern. Spent a lot of time with me, and concerns.

Then came the insurance change. CVS bought Aetna, who had purchased my drug plans over the last eight years. The USA government said CVS was to big, and made them sell off their drug plan.

Their new company was doubling my rates, with less coverage, and deleting other drugs.   I emailed  Debbie from Area 12,  who helps elderly people find plans. She had helped me eight years ago.  She did find me a drug plan, that covered most of my meds, requesting Prior Authorization for a few. That brings us almost current to 2020, but not quite.

A MRI was scheduled after seeing my neurologist, of my neck and brain in December. However  New symptoms started about a week later. Tingling electrical zaps going down into my fingers on my right arm hand.   Another appointment was made to go over the MRI. But looking at this, I do not think they compared it to original, so left my team a message to do that. The main two lesions in my brain looked unchanged, but my degenerative disc disease in my neck progressing.

Two years ago, the pain jab in my right shoulder was so extreme, I switched GPs, as one said I tore the rotator cuff from across the room, doing nothing. A new Dr scheduled a MRI, showing two discs bulging into nerves. I failed at prednisone injected. A surgery was scheduled, but cancelled, when they could not tell me what was causing the pain.  MS or the discs.  Best decision not to have surgery. There xray machine was more powerful than the MRI machine at our local hospital. There was nothing to attach a metal plate to, as osteopenia. 

Then both the H63D gene (  Link https://rarediseases.org/rare-diseases/classic-hereditary-hemochromatosis/#general-discussion ) were found mutated, when certain  blood levels were off, causing Iron overload. hereditary Hemochromatosis WebMD

if they needed to give me blood, for every quart out in, two quarts would need taken out, as it would attack my body, creating me to make more iron. This goes for raw shellfish, or their shells  also.  So no surgeries was added to my DNR.
17 phlebotomy, left my body with no iron, slightly anemic, which comes with its own problems.

on a good note, my Cardiologists said my heart is the best thing going for me.
Hypertriglyceridemia (Medscape) going on though. A Drug Fenofibrate  see this link,  was used, but I've ended up as less than 1% of the population of a side effect that raised my creatine to alarming rates for five of my doctors. This was stopped, replaced with Vascepa. https://vascepa.com/

Our Westie and Poodle, Dixie and Armani



December also brought a huge skin rash from A Copaxone injection. I had UC Davis look at it, and the Copaxone Nurse. I am now limited to injection areas, as have no fat to inject into. So my Neurologist had me look at  ocrevus.com And mayzent.com to look at.

And yes 2020 now. Need to go on more short Amazing Races.
Enjoy the Quality of life,  All my Drs know is goal to maintain.


2020 brought that into full perspective, when a neighbor passed away, and days later their son, who went to school with my partner.   I've known for 20 years .
his mom has Alzheimer, which complicates this all. His partner has taken it quite hard.  She will end up in nursing home for a short time.

I will leave in a good note.  My partner and I did a DNA and Gut sample kit that may give more inside info on health and Gut issues..  Looking for Genes that may be related,  medication on how it's used, or not being used,  and conditions I may have control over.

Another MRI is scheduled,   a interview with Families USA for my next blog. A federal to many more specialist.

Thanks for reading.
Join my blog email. Give me feedback if you have tried any of meds.

JoeY





Friday, July 26, 2019

Butterflies and Multiple Sclerosis

Instead of having a disease like Multiple Sclerosis, wouldn't you rather have the life of a butterfly?
They start as a beautiful caterpillar. Walking with many legs,  inching along.
Then they have to spin a web, cocoon, keeping it protected enough to make a transformation into this creature we know as a butterfly.
 With wings to fly around, flowers , each with their fragrance and taste. With others that also make their transformation. Their lifespan measured in minutes, being years to them.
Smart creatures to obtain such a transformation, and knowledgeable about what flower to try.  Caterpillar







I wonder if they, the butterflies, come down with any neurodegenerative diseases thru their lifespan.  Would it be interesting to be a butterfly for a while? A minute would be a year.

Just a thought, as MS is ever changing, and different for each individual for some reason.
A article in Readers Digest , April 2019,  page 45.  "New tool predicts MS Disability".   It points that Iron could be a precursor, as found in many MS patients "
A research article I found is here from  Healthline.com

That is the second neurodegenerative diseases I deal with. The H63d /H63d gene, part of the HFE iron regulator changed a protein that tells the DNA gene to be On or off that controls the uptake of Iron.
 I did 17 phlebotomy's since October 2018 thru January 2019. Seven months later, I stay real low on Iron. Slightly anemic, but do not see them doing any  phlebotomy for the rest of the year. I will see the cancer Doctor next month, that may shed light on why I am staying so low in iron.  Your blood is replenished every three months by your bone marrow, so it is strange.

I also must note that my GO Dr went on to further his education. This has actually left me in the hands of a real good GP, who is the head of all the clinics. He listens, and can tell from reports done by other Doctors, what is going on.  He said the best Activist is myself. If you have a disease, you sometimes know more than the Doctor.  A good Doctor will tell you if he does not know, or Send you to a specialist, or even another specialists if he thinks the first one did not go far enough. My GO Dr gave me his new email to keep in touch. That meant a lot.  I do have another GP, that I stay in touch with.

My GI issues have been ongoing, and I tried to figure what changed at the beginning of 2019. No new meds, but a major change. I did a ubiome gut report in the first quarter. Glad I did, as the Feds raided ubiome, and closed them down for insurance fraud.-----------Cnbc news article ubiom raided by feds
I am Trying to decipher months later what my Gut may be missing.

The phlebotomy helped lower my triglycerides.
Mutations in the HFE gene, favoring iron overload and causing hereditary hemochromatosis, are associated with primary hypertriglyceridemic phenotypes.  I was in this stage.

The HFE gene makes a protein in the intestine that regulates how much iron your body absorbs from your diet, including your food, vitamins, and medications. If you inherit two mutations in the HFE gene, it does't work properly
https://academic.oup.com/jcem/article/94/11/4391/2596710

https://academic.oup.com/jcem/article/94/11/4391/2596710


The change I realized, was the amount of phlebotomy done, and becoming anemic.  But this did not account for the Gut Microbes missing. I did stop the VSL#3 ds pro biotic, as I did not have Ulcerative Colitis, as led to believe for two years. New GI Doctor and GO Dr, showed me diagnosis, and why this Dr led me to believe I had UC. But I did not have symptoms.

VSL#3 ds may be crowding out the good bacteria. --------------------------------------------

My new GI Dr at the university of California, had taken me off Metoclopromide, which is used in MS  patients to help gut muscles move.  He put me on Trulance, that caused accidents. Something nobody wants to talk about.  He put me back on metoclopromide, once knowing how much that was helping, a three months off period.

I was switched to Linzess, polyethylene Glycol (miralax), along with Generlac (lactose).
I tried adding psyllium hulls, with no success.

I read up on many good probiotics that work in the lower Gut, so my new protocol is trying different ones, and to see if they will help. If anybody has recommendations, or a company Needs a review of their product. let me know!  Even looking at ones to help improve the mood.

 Both my new GP, and GI Doctor agreed on keeping the protocol, to keep things moving, without straining.
Seems to run as genetics I believe. As have siblings and my mom with similar issues of gut and intestines not flowing as perfect. I find in genealogy of many prior generations having same issues. They wrote it differently, and did not have medicine that is now available.   This can cause many problems, if chronic constipation is ongoing.  Much more if you are dealing with Multiple Sclerosis.  So No Straining, use a block of wood to prop your feet on, and reading material to relax and read. Yes, that is  the protocol now, for those that were told different.

Ok, back to being a butterfly for the moment. https://youtu.be/io6Yi_z7SpY
Cheers
Thanks for reading, and leave me some feedback!
JoeY






Tuesday, July 2, 2019

Turmeric or Curcumin





My Neurologists is writing a paper to read at a upcoming convention. It's all about Turmeric I will call this, as he started me on a heaping spoonful of Turmeric per day last year.  He Wanted to know it's weight.   My heaping teaspoons may differ than others, so I took a average, and ended up with two Tablespoons Turmeric.

Turmeric Powder, dry
Tablespoon = 6.8 grams,  which has .136 grams Curcumin, or 136 milligrams curcumin, the active source of Turmeric you want

To make this viable,  a teaspoon of freshly ground pepper was added, along with two Tablespoons of olive oil. Coconut oil or other could be used. I would mix this  with two Tablespoons of Turmeric in a small stainless steel container, and downed it like a shot, being careful not to get anything on any surface, as it stains everything. All three are needed to make turmeric absorb, and give it the extra kick.

The  Turmeric curcumin plant consist of 3-4% curcuminoids, which is the active ingredient. This curcumin  I found at Pure Bulk, with quality control sheet, showing what is in it. A whole different reddish orange powder, and much stronger. A 1/4 teaspoon equals 1250 mg of curcuminoids.  The Neurologist has me shooting for 1500 mg curcuminoids daily.

A one pound bag of Turmeric cost about $6-12. I Purchased  on the Internet, From Starwest Botanicals. This looks easy to grow by following How to grow Tumeric in pots

 This is where companies try to confuse you when buying their pill.  A cheap filler, you get instead of 95% curcuminoids. They give you lots of fancy language.


 The pure Curcuminoids, I bought from Pure Bulk, in a 250  gram bag.  The cost seems to of doubled, but you can tell from the colors, what is real.  They provided me with the COA sheet, of what's in it.
Fresh ground black pepper was also added of a teaspoon. You can buy this as BioPerine© in 10 mg pills.  I used two Tablespoons of Olive oil, as the oil absorber needed.

My Neurologist at this point wanted me On 1500 mg curcuminoids, as this was the active ingredient being used, for the best results. This was being used for my Multiple Sclerosis, along with my DMT, and twenty other drugs. Degenerative Disc Disease plays into this, along with Iron Overload, Thick blood, known as hemochromatosis, which is hereditary. The HFE gene, H63d/H63d  inherited from both parents, both were mutated somewhere in the family tree.

 This was caused by two Rare copies of the H63d Gene. My brother also has this condition. Rare Diseases, only found one other in a ten year search with eight articles. I need a researcher to do some studies, hope they are reading.

rs1799945, also known as H63D 

The HFE gene,  the H63D mutation tells us is that normally in this necklace the 63rd bead is the amino acid histidine (H). But, people with this mutation have an aspartic acid (D) bead there instead.

neurodegenerative-iron-hemochromatosis




This change causes this protein to not do its job. A single wrong bead has put a kink in the necklace!

So this is why H63D can cause problems with iron in our bodies. It results in an iron-sensing protein that can’t sense iron as well as the un-mutated version. This caused Iron to store up in my body since I was a kid.   I have done 17 phlebotomy's undergone in a weekly basis.  Iron is absorbed by the small intestines, and builds up in the liver, heart, and organs. Causes many problems including Metabolic syndrome.  This out me into what the Cancer Dr told me, as slight anemic.

where am I going with this?  There is a chelation agent,  known as Turmeric. The more you learn, can be amazing, on how to help the Iron get out of the body, parts, and the positive effects Turmeric and Curcumin have, besides on inflammation, and the wonder drug articles talk about

The only thing the barbaric phlebotomy is only used with Hemochromatosis or high iron, and that only deals with the sluggish blood. Read my other blogs for pictures and details.  Mine came across as high, hemoglobin and hematocrit. Interesting that ferritin was not off the charts, and thus could not be used to track my phlebotomy. My brothers, however, ferritin is way over the range.

Turmeric and Curcumin have some great qualities by just searching the net.

“If you want anti-inflammatory effects you need to get 500 to 1,000 milligrams of curcuminoids per day.”about

Research with Multiple Sclerosis seems to be ongoing, so I will consider me a test subject, and try to document facts I see or understand. I am not a Doctor, or Scientist, but would welcome feedback.

The compounds that give turmeric’s yellow color, and are also bio active agents that have anti-inflammatory, anti-oxidant, and anti-microbial properties. Of the three main curcuminoids present in turmeric (diferuloylmethane, demethoxycurcumin, and bisdemethoxcurcumin), diferuloylmethane, more commonly known as curcumin, is by far the most prevalent and has received the most attention.


The Majority of turmeric supplements on the market advertise that they contain standardized 95% curcuminoids. The key here is the word, "CONTAIN". This is why it is vitally important to look at a supplement ingredient's panel. Most turmeric supplements will only contain a small amount of curcuminoids.

However, we know that the key to any turmeric supplement is 1000 mg of 95% curcuminoids. Anything less and you're wasting your money!

They use plain Turmeric as a filler, trying to confuse you that it has 1000mg curcumin, but a line below may then state 100mg extracted curcumin to 95%.  A maze, as do many curcumin products.  Look at how many pills you need to take also to obtain the dose.
It took me a while to sort out, with pills bought from many companies, and then compare them with 95% pure curcumin I make into pills.

  • Bottom one contains 1300 mg curcuminoids made from 95% pure
  • Top left, two pills for 750 mg curcuminoids
  • Middle top only gives you 100 mg curcuminoids for two pills, 1200 mg turmeric
  • next is One capsule gives you 50 mg curcuminoids, and 400 mg turmeric
and final One capsule  gives you 500 mg curcuminoids, but extract is 93%




Since I also want Tumeric, I use as 6 ounce resealable  containers. I add 2 Tablespoons of Turmeric Powder, 1500 mg curcuminoids weighed out,  2 tablespoons of olive oil, perhaps  another oil I will try, 10 mg black pepper, freshly ground, (or I take a 10 mg BioPerine© tablet) shake well with some water. I Might try juice, just enough to get mixture so it's drinkable.
I can make a dozen of these, adding liquid when ready, so ready for use

I also use a pill maker, getting 625 mg curcuminoids into each by weight. So a couple of those, BioPerine©, and some oil in a small container.

When making, remember this will stain anything. Pills need wiped down, a old  pill bottle labeled, outside of bottles wiped, any surfaces cleaned, and your hands.
dishes, or anything that contacts the powder will turn yellow.

  Do not expect to buy a quality curcuminoids from the box stores.

Bioperine©, purine, is a fancy name for black pepper. It can be bought separately in 10 mg from swansons, puritains pride, or other vendors. I also bought a pound bag of peppercorns, and a fancy electric grinder my mom sent to grind.


The one on the bottom contains 1300mg of 95% curcuminoids, comes from a powder form, and pills made. Do not forget the black pepper or bioperine © and some type of oil.

while the last one contains turmeric root powder which as we know, only contains 2-3% curcuminoids. It's front label states 500 mg per capsule Tumeric Curcumin, making you think  that's one to buy. Turmeric curcumin with bioperine, with claims "may".... Curcuminoids from Turmeric... And more you search the front labels become more confusing.
Powder I utalize. 


A proprietary formula is a fancy way for manufacturers to get away with not telling you exactly how much of a certain ingredient is in that supplement. Take a close look at the table of contents.  If it does not tell you the exact quantity of each item in their priority blend, it may be just a wave of curcuminoids over the top.  They are getting sneaky, trademark names of their special additives.  One I found was beads of oil surrounding the curcuminoids to make it more absorbed, along with BioPerine©. A expensive supplement. Perhaps works better, but cost prohibitive.


Certificate of Analysis". What is this certificate and why is it important? This certificate is something that all QUALITY manufacturers should get with each and every batch of their supplement they create! You can ask for it.   A Quality supplier, will refuse the batch if it does not make standards.


The main product of turmeric is the aromatic yellow-orange powder used in curries and many other recipes. The powder is made from the dried rhizome of the plant, and it contains curcumin, the bio active ingredient that is responsible for the rich color and many of the benefits associated with the spice.

The fat content of turmeric includes around 34 different essential oils. One of these, aromatic turmeric, is currently being investigated for its potential to treat neurological diseases.


Before the spice can be ground, the rhizome must first be cured. The following are the basic steps involved in processing turmeric powder:
How to harvest turmeric, the basics, and need to know

what-is-turmeric-how-to-harvest-health-benefits-and-more

What you need to know before buying curcumin

Me First Living Turmeric Curcumin 1000 mg 95% Curcuminoids, Bioperine 10 mg,

Starwest Botanicals sells Tumeric, and Curcumin by the container/pouch
Bulk Supplements sells these by the container/pouch. High quality.

If you are looking for pills, for easy use
Swanson Vitamins  sells curcuminoids 350 mg
Puritains pride turmeric powder extracted to 93% curcuminoids, 500mg wonder what else made it in?

BiopPurtine© or Fresh ground black pepper is  needed if not included in all pills.

Many others with special labels, to confuse you, or sign you up on auto ship. Do not do that. A Reputable company does not need auto ship, as they know you will come back to them to re-order if they have a quality product.

A oil is needed to help absorb. Olive oil, coconut oil, butter, gape seed oil, or your favorite.

The taste, something to get used to? I mix mine, just enough liquid so I only have one gulp. Let me know if other ways.

if taking capsules, I ensure  10 mg bioperine© is in the combination, try to ensure close to 1500 mg curcuminoids, and some turmeric is in the pills. Mix and match,  knowing I have pre made bottles and on a average  I am meeting dose of Tumeric, and curcumin.

It's to early on to comment if this gets me off the 800 mg NSAID or other meds I use, the positives hopefully outweigh the negatives.
Below is more links I read.
.Gov article about curcumin and turmeric



Thanks for reading.
Let me know if you find other pure suppliers. Our there!

Update November 2019
I have increased Curcuminoids to around 2500mg daily with 2 Tablespoons oil, and 10-15 mg of black pepper.  This is so I can stop 800 mg of Ibuprofen, that may be messing with some labs.

JoeY