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Sunday, December 6, 2020

Multiple Sclerosis and the Gut

My Story also on

Irritable Bowel and Multiple Sclerosis

Just published December 2020. Make sure to leave me a comment there!!!


This was a great topic from irritable bowel symptom.net

https://irritablebowelsyndrome.net/living/top-nutrients

Glutamine. 


This amino acid is very important in gut healing. Glutamine helps to maintain the integrity of the intestinal wall and therefore aides in leaky gut. With less intestinal permeability means less microbes can get through the gut wall, decreasing infections. It is also fuel for hepatocytes, improving liver function.

Zinc is involved in many biochemical processes in the body including protein and DNA synthesis, carbohydrate metabolism and antioxidant systems. It is therefore important for effective digestion. Wound healing and normal immune responses require zinc, so it is great for IBS sufferers and their overall health. Zinc deficiency has also been linked to depression. Zinc supplements can cause nausea on an empty stomach so please ensure you take it with food. Foods high in zinc include all meats, pumpkin seeds, eggs, and seafood

Magnesium like zinc is one of those nutrients that is part of hundreds of processes in the body. The main ones that affect IBS are:

While calcium contracts muscles, magnesium relaxes them, so for those with cramps this is important to make sure your body has the resources to relax muscle. Magnesium can help reduce discomfort and pain caused by cramping.


Stress and anxiety use up a lot of magnesium. These have been identified as trigger in many people with IBS, so it is very important to maintain good levels of magnesium, so you don’t get depleted.   

Magnesium is also used for sleep and relaxation so very important for everyday wellness.

You can take magnesium as a supplement but be careful with the form of magnesium that you take. Magnesium oxide is the most common form found in supplements but is used for bowel cleansing as it is not well absorbed. Look for magnesium citrate, chelate and malate

Magnesium rich foods include almonds, avocado, and figs. These foods are all high FODMAP, so as IBS sufferers are often avoiding these foods, this can often lead to low magnesium. Some low FODMAP foods high in magnesium include spinach, pumpkin seeds and Brazil nuts.

Vitamin B6. 


Vitamin B6 is also known as pyridoxine. B6 is absorbed in the small intestine, so problems with absorption can occur in those with IBS. B6 is very important for mental health as it is used to make serotonin, dopamine and GABA neurotransmitters, basically all of the happy hormones. As mental health is an important part of IBS treatment B6 is crucial.

Iron and B12

Many people with IBS end up with iron-deficient or B12-deficient anemia because of issues with absorption. Those with IBS-D are especially susceptible as this causes absorption to be low. With the high levels of inflammation often present with IBS, this can cause the digestive system to be unable to absorb both iron and B12.

The H63d genes I have, play into this. I absorb iron from both these genes, making phlebotomy or vein puncture needed to get rid of iron, 

But then dangers of being anemic, I will blog about later.

I’m lumping them together here as they often go hand-in-hand and while not essential for treatment of IBS per se, they are important nutrients to keep an eye on, so you don’t have further health complications. Therefore, if you are feeling tired and fatigued all the time make sure you check your iron and B12 levels. Make sure you get appropriate testing and consult your medical professional before taking iron or B12 supplements.

As always, consult your health professional before taking any supplements.


Multiple Sclerosis and food, Diets. You can Google and get every type of diet out there.

The current Fad Diets, like keto, not proven.

i tried being being sugar free.  Less than 4 grams per day.  Sure lets you become aware of how much sugar is in everything, and also hidden sugar.   Even yougurt was off the list, milk, and a ton of other items by reading and understanding lables, and how they hide the sugar now.  becoming a vegan,  going gluten free, milk free, and many more explored.

Many multiple sclerosis meds cause weight gain, almost overnight. I am not exempt from this.

My GI Dr suggested the food map diet. Eliminating everything and adding it back in slowly to see what bothers your GI system.  I went a step ahead, did a DNA, that showed foods to avoid, super foods, and cautious ones. This seemed a no brainer, with probiotics, vitamins, and recommendations made by viome.com, and my nutritonalist.

The food map was interesting, and kinda exciting finding super foods, and ones to avoid, or bring back slowly.

I need to mention more supplements....


Berberine is one my Heart Dr recommended. 

Medplus.gov  is the best site for searching.

This site also shows major interactions, so would check with your Dr before starting.

I am using it for tryglicerides, and to loose weight. Https://medlineplus.gov/druginfo/natural/1126.html


Possibly effective for...

Canker sores. Research shows that applying a gel containing berberine can reduce pain, redness, oozing, and the size of ulcers in people with canker sores.

Diabetes. Berberine seems to slightly reduce blood sugar levels in people with diabetes. Also, some early research shows that taking 500 mg of berberine 2-3 times daily for up to 3 months might control blood sugar as effectively as metformin or rosiglitazone.

High levels of cholesterol or other fats (lipids) in the blood (hyperlipidemia). Berberine might help lower cholesterol levels in people with high cholesterol. Taking berberine for up to 2 years seems to reduce total cholesterol, low-density lipoprotein (LDL or "bad") cholesterol, and triglyceride levels in people with high cholesterol. When compared with standard cholesterol-lowering medications, berberine appears to cause similar changes in total cholesterol, LDL cholesterol, and high-density lipoprotein (HDL or "good") cholesterol, and it might be better at reducing triglyceride levels.

High blood pressure. Taking 0.9 grams of berberine per day along with the blood pressure-lowering drug amlodipine reduces systolic blood pressure (the top number) and diastolic blood pressure (the bottom number) better than taking amlodipine alone in people with high blood pressure.

A hormonal disorder that causes enlarged ovaries with cysts (polycystic ovary syndrome or PCOS). Research shows that berberine can lower blood sugar, improve cholesterol and triglyceride levels, reduce testosterone levels, and lower waist-to-hip ratio in women with PCOS. Berberine may even lower blood sugar levels similar to metformin and may improve cholesterol levels better than metformin. It is unclear if berberine increases pregnancy rates or live birth rates in women with PCOS.

1: Reduces Cholesterol and Triglycerides

Significantly and Safely

Big Pharma has created a multi-billion-dollar industry around controlling cholesterol and triglycerides with a "solution" that too often negatively impacts other aspects of your health.

Thankfully, berberine can come to the rescue. One study of participants with elevated cholesterol and triglyceride levels reported that taking 1,000 mg of berberine daily for three months led to a remarkable 25% drop in LDL and a 35% drop in triglycerides—as well as a 29% reduction in total cholesterol—with no side effects.[1]

Another study found much the same. In this second trial, scientists recorded a 21% reduction in LDL, a 36% reduction in triglycerides and an 18% reduction in total cholesterol—just by taking 1,000 mg daily for three months.[2]

And here's another reason why berberine is such an extraordinary antioxidant...#2: It Dramatically Improves Metabolism,

Promotes Weight Loss and Boosts Energy

How Effective is Berberine for Weight Loss

"Berberine has already passed a handful of important demonstrations of efficacy. In 2012, for example, one study showed that obese human patients lost an average of 5 lbs over the 12-week course of treatment.4 While these results may seem modest, there’s more to the story. Significantly, the patients in the trial experienced a 23% drop in their soluble triglyceride levels and a 12.2% drop in their cholesterol levels beyond what would be expected from weight loss alone. This means that berberine helped the patients lose weight while simultaneously reducing the harmful chemical correlates of being overweight; high triglyceride and cholesterol levels are associated with many of the negative health outcomes of being overweight. As such, berberine provided valuable protection of overall health."

Another link found,

https://www.foundationalmedicinereview.com/blog/why-using-berberine-for-weight-loss-could-help-patients-improve-overall-health/

Who should buy berberine?

The supplemental benefits of berberine are best taken advantage of by people who are concerned about their metabolic health, want to reverse the negative health effects of obesity, or who want a chance at improving their blood glucose regulation and fight back against metabolic dysfunction.

It’s been studied most intently as a way to help treat insulin insensitivity in people who have type two diabetes or who have metabolic syndrome. However, berberine also finds applications in helping with other health issues commonly associated with an unhealthy diet and excessive body weight, such as high cholesterol and high blood lipids. 

While berberine is not, on its own, a fantastic weight loss supplement, it does do a fairly good job helping to ameliorate the negative health effects associated with being overweight. It might help lower your body fat percentage, but it’s far stronger at improving health than just reducing the number that you see on the scale. 

Some research suggests that berberine works for weight loss, but not as well as some of the more high-powered compounds for weight loss like green tea extract. Its real strength lies in changes to your body’s metabolic health. So taking berberine might be helpful as you are trying to lose weight, so you can move your body closer to a metabolically healthy state.

Interestingly, berberine also has a dedicated core of advocates among people who have irritable bowel syndrome. While the mechanism of action here is not entirely clear, clinical research does support the use of berberine to reduce some of the symptoms of irritable bowel syndrome, so if you have gastrointestinal problems attributable to IBS, you may have success using berberine as well.

https://bodynutrition.org/berberine

https://www.stopagingnow.com/berberine56


 Alpha lipoic acid is another one I am on.... Like many prescribed by my neurologist.

Alpha Lipoic Acid (ALA) is a vitamin-like compound that is used in the body to break down carbohydrates and generate energy for the body’s organs

Natrol® ALA is also an antioxidant, a substance that neutralizes potentially harmful chemicals called free radicals and thereby helps prevent cell damage in the body. What makes alpha lipoic acid unique is that it functions in both water and fat unlike the more common antioxidants such as vitamins C and E, and it is able to re-cycle antioxidants such as vitamin C and vitamin E after they have been used up.

Alpha-lipoic acid can improve the function and conduction of neurons in diabetes, as well as help with memory loss and mental acuity.

Benefits:

Helps Protect Against Cellular Oxidation

Helps protect Against Age-Related Damage

Whole Body Cell Rejuvenation


And finally I will talk about  TUDCA and TAURINE 

MS people are low in bile salts 

https://medlineplus.gov/druginfo/natural/1126.html

https://pubmed.ncbi.nlm.nih.gov/?term=Tryglicerides+


Taurine plays an essential role in metabolism and digestion, as it helps the liver to create bile salts. Bile salts help break down fatty acids in the intestines. Bile acids are the body's main way of breaking down cholesterol.

Mutations in HFE Causing Hemochromatosis Are Associated with Primary Hypertriglyceridemia

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

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


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) Vascepa I use

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

How the body digests and absorbs fat

Biologically speaking, the purpose of eating is to gain energy, nourishment, and building blocks for the body to continually renew itself. Fats are a great source of energy because, at 9 calories per gram, they have more than twice the energy potential of carbohydrates, and they do not cause cardiac events. But they do more than just supply energy. 

Fats are the building blocks of phospholipids, key components of cell membranes. Fats store energy, and their components serve as intracellular messengers and help to manufacture hormones. Most of the fat we eat is in the form of triglycerides, which are large molecules. The body uses lipase enzymes to break them down into smaller particles. Most lipid digestion in an adult occurs in the upper loop of the small intestine, where a pancreatic lipase does the work.  Fats may differ from each other by virtue of carrying different fatty acids, which may be saturated or unsaturated.  

When we eat fat, stomach emptying slows and a small amount of fat is treated by gastric lipase in the stomach. This holds especially true for saturated fats, like those in butter.  

The liver produces bile, stored in the gallbladder, ready to be shot into the small intestine when the fat gets there. Bile emulsifies the fat and introduces it to pancreatic lipase, whose job is to digest the triglycerides into free fatty acids and monoglycerides, which are then absorbed into the small intestine under typical circumstances. 

Fat malabsorption symptoms

At the most basic level, fat malabsorption is a decreased ability for the intestines to absorb needed fats. 

The signs and symptoms that someone who is lacking sufficient enzymes to digest and absorb fats may 

bloating

gas

feelings of fullness

stomach cramps 

diarrhea 

pale-colored stool 

floating stool 

erratic bowel movements 

Failure to absorb fats will likely engender additional symptoms, including: 

dry hair and skin

premature skin aging 

weak nails 

sore joints 

Where fatty acids are concerned, it also affects: 

moodiness 

anxiety by

depression 

impaired cognitions

allergic or atopic conditions - eczema, ast byhma, hay fever 

sleep problems 

You may also see low levels of cholesterol, triglycerides, HDL, and LDL in your blood test results. 

https://bodybio.com/blogs/blog/improve-fat-digestion-absorption

https://bodynutrition.org/taurine/

What are the health benefits of taurine? The most important role that taurine plays in the body is assisting with metabolism and digestion. Taurine is known to aid the body in the development of bile salts, which are ultimately used by the body to metabolize fats within the digestive system and thus can decrease the acquisition of body fat.

Some studies also note a connection between heart health and taurine consumption, as taurine has been connected to a decrease in cholesterol levels and an increase of positive heart functioning. Additionally, like many amino acids, taurine plays a role in muscle maintenance and development. The effects that taurine has on the heart and muscles can result in improved athletic performance and focus during workouts. Taurine also has been shown to improve mental focus, making it a powerful pre-workout agent. 

Is taurine bad for your kidneys? Taurine is an important amino acid that plays a significant role in kidney functioning. Oftentimes, taurine is administered to those with kidney disease or decreased kidney functioning to improve their functioning. Taurine has even been prescribed as a treatment method for those suffering from diabetic nephropathy, which affects the kidneys (11).


Another blog is needed about Green Tea and  Matcha.  I will have to go into later, as this is getting extensive to understand, but each of these plays a role in Multiple Sclerosis and the Gut. This is More for me to find quick links, and of course to ask your Doctor before trying any of these.

Thanks for reading

Subscribe to my YouTube channel. Search Everchangingms 

Danger MS Curves Ahead


Post comments below

JoeY







Sunday, November 29, 2020

Butterf!lies and Multiple Sclerosis

 


New youtube channel.     Youtube.com       Everchangingms

                                 Butterflies and MS

Why even call or say something like this? Seems strange on its own, but I. Am sure everyone can relate.

"The life cycle of a Painted Lady butterfly is approximately three weeks. Female butterflies usually lay their caterpillar eggs around 5-7 days after emerging from their chrysalis. Baby caterpillars hatch from the eggs after three days. The growing caterpillars will then eat for 10-12 days before forming their own chrysalides. Finally, adult butterflies will emerge from the chrysalides after 7-10 days, starting the life cycle all over again!"

What does this have to do with MS?  There is a term used like I have "butterflies in my stomach", usually referring to the unknown, or a churning feeling given at any moment.  This can manifest into the above cycle of learning, exploring, and redoing the same as new items are found.

RimabotulinumtoxinB (Myobloc), also called botulinum toxin type B, is made from the bacteria that causes botulism. Botulinum toxin blocks nerve activity in the muscles, causing a temporary reduction in muscle activity.

Myobloc is used to treat cervical dystonia (severe spasms in the neck muscles).

I have many unknowns with Primary Progressive Multiple Sclerosis. This includes waking up with shooting zaps from my legs and neck muscles, wondering if they will support me.  On other blogs, I talk about the 

                                  Black Box Warning.


This is for  botulinum toxin type b I recieve every three months. Its cycle is like a butterfly. Mine is injected with fine needles into many muscles of my calves, neck and thigh muscles. The botulinum toxin then starts to spread over the next few weeks, making its cycle of reproduction into, deadening overactive muscle nerves that are part of my Multiple Sclerosis sending to them erroneously.

symptoms can also occur in adults treated for spasticity and other conditions, particularly in those patients who have underlying conditions that would predispose them to these symptoms. In unapproved uses, including spasticity in children and adults, and in approved indications, cases of spread of effect have occurred at doses comparable to those used to treat cervical dystonia and at lower doses.


The botulinum toxin continues its life cycle, for me, lasting about 52 days. Short of the 90 days, that is required to wait for the next injections, or new cycle to begin. 

Even on with a computer guidance system, the professor of the Neurological department, knows which muscles, injections, spots, muscle names, and where he is trying to obtain the best result, using the entire allotted amount of botox in many sites.

Of course, not all sites get addresses at a single visit. It takes time for the botox to multiply and travel into and thru the muscles. A Cane helps me walk into and out of his office, feeling immediately the botox injection.

A black box warning
The botulinum toxin contained in this medication can spread to other body areas beyond where it was injected. This can cause serious life-threatening side effects.

This is where the benefits outweigh the risks for me. A special form is signed by me before the neurologist can inject.




A weird process to look forward to, that I just had done, and done since the beggining of my diagnosis, every three months.

 And the butterfly process begins again.

As far as butterflies in my stomach, is always the unknowns. I can research many items. Some outside my control, some just numbers that specialists look at from blood work.

There are items I share with my Neurologist, I will post links in another blog to keep you reading. They thank me for the links, as it pertains to the Rare H63d genes I have, and also  to specific topics. You (my audience) gets to wait until I see the proper specialists, so I can obtain their perspective.

Anyways, thanks for reading!

Post comments below, or on my new YouTube channel by looking for Everchangingms on YouTube.    Everchangingms 

Or copy link below

https://www.youtube.com/channel/UC98yB2domLErZ1qpfe5VUfg

Like my videos, And be sure to comment as this helps obtain more views.

Stay Safe

JoeY







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

Sunday, October 11, 2020

Fatigue and Multiple Sclerosis

 



           Fatigue and multiple sclerosis


This can be chronic, as most MS people will tell you. Fatigue for the common person or from one person to another is different.  It is hard to explain, but like you have been hit head on by a semi truck.  Sometimes just moving from one place to another is difficult, as Energy needed. Not that you don't want to do a project, just no energy, or to fatigued to do it.

My partner bought me a simple watch, but in its app it shows your fatigue level. Not sure of the algorithm used, or the accuracy of smiley faces, coffee cups. 




Quite interesting, as sleep is a factor in fatigue. 

My heart rate, EKG, Blood pressure are better monitored with a cuff, as these numbers never are accurate enough with any monitor.  I use the monitor app mainly to track sleep and steps done daily.  The Fatigue monitor,  I will have to let you know with more use.

But for me, Fatigue is daily. I have used scales, like the pain scale to monitor daily fatigue. It can hit me instantly, or I can wake up already fatigued. 

MS fatigue. It can be crushing, numbing, and stop the hardiest person in their tracks. 


"If you have multiple sclerosis (MS), you might feel very fatigued from time to time. It’s different than normal tiredness, and it doesn’t get better with sleep.

The best way to ease fatigue is to treat what’s causing it. That’s hard to do when you have MS. But you don’t need to manage your symptoms alone. Your doctor can help you figure out what triggers your fatigue. They’ll suggest some lifestyle changes that may help. You might need to treat other issues like sleep problems or depression.

If that’s not enough to ease your fatigue, medication can be an option."

This is a quote from webmd.com

I am on Provigil, as it gives me a hour more awake time then the generic modafinil.


There are many medicines out there to help keep you awake.

My Neurologist kept me off the the ones which had many side effects, or were stimulation forming. Provigil does not work on everyone though, so thus talk to your specialists of side effects, or differences of different ones to try.   There is a list of them, with new ones coming for narcolepsy that is used also.  The prescription may need a heading like, for shift work from your prescribed to be prescribed. A weird insurance issue. A Sleep Study may be required.

Provigil (modafinil) is a medication that promotes wakefulness. It is thought to work by altering the natural chemicals (neurotransmitters) in the brain. Provigil is used to treat excessive sleepiness caused by sleep apnea, narcolepsy, or shift work sleep disorders.

Provigil or Modafinil is not an amphetamine


The US Food and Drug Administration hasn’t approved any medicines to treat fatigue in patients with MS. But doctors often use amantadine, modafinil, and methylphenidate to treat fatigue in such patients.


Healthline. Com states

"Certain complications of MS can also induce fatigue. This may be referred to as a secondary cause. Complications of MS that may also cause fatigue symptoms include:

Fatigue can also be a side effect of certain medications, such as those used to treat spasticity, pain, and bladder dysfunction."

So you can see Fatigue is shown in many different aspects. 

Chronic fatigue usually becomes worse as the day wears on.   It can last for weeks, or never seem to go away.

There is a Delayed Fatigue, when major fatigue follows you for weeks, after doing a over exherting  item.  This could be a simple walk of going to far, or a exercise, mental or physical that overtires  nerves that are being misfired by Multiple Sclerosis. One of which you are left with no Energy. 

It can be acute (lasting a month or less) or chronic (lasting from 1 to 6 months or longer). Fatigue can prevent you from functioning normally and affects your quality of life. According to the National Multiple Sclerosis Society, 80% of people with MS have fatigue.

So lots of information to search for on the web, sometimes different searches will gather you more information to ask your Dr what to try. 

I still end up tired, needing a nap in the afternoon, but can tell considerable how Provigil works with me.

Questions or comments, let me know. New Year comming up, As Insurance Companies like to play Doctor.

Thanks for reading

JoeY


Friday, September 25, 2020


Multiple Sclerosis and IBC

One of the news digest has my story

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

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


This one hooks right up to your existing toilet.

Bathroom Luxury Meets Eco-Friendly

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

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


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

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


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





I am always looking for answeres or help. 

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

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



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

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

Yet another great link!



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

Thus the alternating constipation or Diarrhea

I found this government paper on 

Butyric acid in irritable bowel syndrome

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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


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


One of my stories was just published in irritablebowelsyndrom

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

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

Thanks for reading, stay safe.

JoeY




Sunday, September 6, 2020

H63D/H63D genes and MS

 

https://youtu.be/rnKbImRPhTE?list=RDrnKbImRPhTE
For those who want the background music.


Multiple Sclerosis and having  H63D H63D  genes

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


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

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

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

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

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

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


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

It came out as thick as pancake batter.



Nord was joined. 


https://rarediseases.org/


I joined Rare Patients Voice

https://rarepatientvoice.com/



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


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

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




H63D & S65C ~ The Forgotten HFE (Haemochromatosis) Mutations

Private group on Facebook was found earlier this year. 

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



This led to a lot more research.

Checkiron.com



Youtube up to date info on CHECK IRON

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


"Risk Score for HH Type 1 is 7.9

Coverage 42.46% for 23andMe


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


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


My info, so I do not loose

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

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

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


A find that my Endocrinologist thanked me for.


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

https://rarepatientvoice.com/EverchangingMS/

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

JoeY


Friday, August 7, 2020

IBS and Multiple Sclerosis

IBS and MS

Yes, it hits kinda unexpectedly. First it was being plugged up. Bowles creating hard lumps that would not pass.  Generlac was prescribed eight years ago. A nother Dr, playing Dr did not know anything, and increased the Generlac to the point of having accidents at any given moment.

A test for Swallowing was done, by eating radio active food, and the Drs and entire staff watching how it slowly, and I mean slowly went from mouth to stomach.
Esophageal mobility disorder was given. Metoclopromide to help the muscles move food thru was also prescribed.  Apparently A drug used in many MS patients.

Then came
A upper and lower GI was performed. The Dr made it to believe I had Ulcerative colitis, when coming to. Yes, have them knock you out for this procedure.

Getting test results a few years later, besides the one they gave me was like pulling teeth. I received the Anesthesia report, which showed some problems they had.  I was to take VSL#3.

But since I started Bloating, a condition Kim Dolce describes quite well in her blog, 

I have gone thru all the test she has,  looking for small intestine overgrowth of bacteria,  a breath test to see how much methane I was producing. Could not pass a dui test haha..

  This is a part of your insides that starts inflating like a balloon. Yes, eight inches in diameter I would blow up. Think of Willy Wonka , Charlie and the chocolate factory. Their was this naughty girl, who insisted on chewing gum. And when it got to the blueberry flavor, she blew up like one.
 The difference is its only in the stomach, waist that swells up. If I could  prick the skin stretched so much with a pin, I would.

A different GI, I went to and a Smart GO, showed me why I did not have UC, but IBS.
That was a good thing, but what is the plan of action to take?

A article,
CAN HYDROCHLORIC ACID IMPROVE YOUR DIGESTIVE HEALTH? – ADVICE FROM DR. ROBERT MARSHALL, PHD

This I have not tried yet. I see the GI every three months, so will ask.

I did a viome test to see foods on food map, to see my super foods, ones to avoid, and ones that were good. This perhaps pointed me in right direction of foods, but recommendations of other items my GI Dr questioned.  He sent me to a nutritionist to verify.

Things I have learned:
People with MS are low in Bile production.
Multiple sclerosis (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.Mar 31, 2020




little bit of research led me to an article published in the Oman Medical Journal. The study suggests patients with irritable bowel syndrome have a high rate of vitamin D deficiency.1 Another study published in the International Journal of Medicine found that patients with IBS who have low vitamin D serum levels showed an improvement in symptoms when treated with vitamin D therapy.2

I am on high dose of vitamin D,  being monitored by a endocrinologist, so knew this was not a problem with me, but others, may have a deficiency. Be monitored if taking high doses, as calcium build up could happen.

But this led me to add ox bile, and bile acids, along with a host of other supplements one at a time to see how my body reacted.

Some of what I have tried

Lactobacillus rhamnosus GG 5 billion cell
L-GLUTAMINE 500 mg Capsule
SODIUM BUTYRATE
PancreatinPANCREATIN-LIPASE-PROTEASE-AMY PO
Cinnamon 
BERBERINE-HERBAL
Magnesium
N-ACETYL-ALPHA-D-GLUCOSAMINE
Alpha lipoic acid
LACTOBACILLUS REUTERI PO
Vsl#3

Diets, did many.
Find most MS patients get a wrong signal telling muscles in intestines how to move. Metoclopromide  put on years ago for delayed emptying (slow moving from mouth down).
Esophageal mobility disorder.
Then tried many type of probiotic, even VSL#3, and then to pre biotics. List goes on. 
Apparently MS people are low in Bile acids also. So now on ox bile, and bile acids that break down fats, and carbs with a handful of other pills.

Chia seeds, flax meal, figs, psyllium husks, seeds, potato starch, benefiber, quinolla,  all tried

A tiny pill that has simethicone (Wal-Mart brand) has relief helps the bloating.

Still alternate, but linzess has been best, keeping me going (either liquid, soft, controlled by how much lactulose used)
 Always looking to find out what others use. 

 too much pressure from not the bloat, but from constipation can really cause damage.  The Bloat, quite uncomfortable. Puts 8 inches more On me.

Would love others experience, or what works.
Thank you for reading
JoeY

Tuesday, June 30, 2020

Pain Sensitivity

Pain Sensitivity...



Fight…. or flight!.  I know what my Pain Sensitivity is over the last eight years.

It was first tried to be controlled by Tramadol. A medicine I found to be allergic to the first week. Then came

Indomethacin.

One that burned holes in my stomach, so  prilosac, for the stomach, the It was opioids, and  morphine. Enough that the pharmacists thought I was giving it to someone on their death bed.

I was able to get off all these, except prilosac when a proper diagnosis came. Two meds work to block Pain in Multiple Sclerosis. Are Lyrica and Cymbalta combination. They need to start with name brands, as generics don't work. Gabbapentin is another good one. I am on over twenty five medicines, to control Pain and my multiple Sclerosis.  

A interesting report of DNA was done by Sanogenetics.com.  It shows some DNA they know is  related to Pain. Enclosed is their report, I find interesting.  Everyone has different Pain thresholds. I am sure DNA will shed light on many others.

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

Thanks for reading, and leave me a comment!
Joe






Pain Sensitivity

Pain Sensitivity

Complexity Level:Complex
Heritability- low -10%

Genetic variation in these sites has been associated with different levels of susceptibility to & risk of chronic pain.
rs4680
AG
- This means that you are likely to have an intermediate pain threshold.
rs1042713
GG
- This means you have a normal risk of experiencing chronic pain
Thermal pain
rs25531
TT
- This means that you are likely to have a higher threshold for acute thermal pain.
A pulled muscle in the back or leg can send some of us to the couch for days whereas others seem to more easily recover. How can we explain differences in pain sensitivity and recovery? Could the answer be in our genes? Scientists have been studying the question for a long time and the answer is: “it’s complicated”. Susceptibility to pain appears to be dictated by interactions between your environment and your genetics.

Fight…. or flight!

Many of the genes found to be associated with pain sensitivity contribute to the production of adrenaline and serotonin .
Both adrenaline and serotonin are 'neurotransmitters', which act as messengers in the brain to carry information. Adrenaline is often known as one of the “stress hormones” and is responsible for the famous “fight or flight response”. Increased levels of adrenaline raise the heart rate, elevate blood pressure and boost energy supplies. In other words, adrenaline prepares the brain to react to immediate danger. In patients with chronic pain, some genetic variants have been found on a gene called COMT, which is known to be involved in the regulation of adrenaline. Genetic variation in the site called rs4680 has been associated with different levels of susceptibility to chronic pain. People with two G's in this position are much more tolerant to chronic pain!
Genetic variation in another gene called ADRB2 also influences adrenaline levels and has also been suggested to play a role in pain sensation. One genetic variant near ADRB2 has been associated with chronic pain: rs1042713. Curiously, the adrenaline related genes mentioned in this article may also be associated with sleep dysfunction and anxiety.

Pleasure or pain?

The second neurotransmitter system that seems affected in patients with chronic pain is the serotonin pathway. Serotonin is often prescribed as an anti-depressant and is popularly thought to contribute to feelings of well-being and happiness. This description does not do serotonin justice, as it does far more in our body than regulate emotions and works in complex and intricate ways. In the context of pain for example, serotonin can act as an analgesic (painkiller) or as hyperalgesic (pain enhancer), depending on where it acts in the body. Several genes controlling serotonin production are involved in susceptibility to pain. The HTR2A gene codes for a protein that acts as a 'landing pad' or receptor for serotonin. The serotonin transporter gene SLC6A4 is also involved in pain perception. If you have two C's at rs25531, you are more likely, on average, to be more sensitive to thermal pain (such burns or frost bites).

What does this tell us?

This is only a snapshot of the many genes that are involved in pain sensitivity. It is important not to forget that the perception of pain can also be influenced by psychological factors. A recent study suggested that swearing out loud while immersing your hand in cold water can help relieving the pain . Overall, more research is needed to truly understand the biological nature of pain. As our understanding improves, there may be opportunities to develop more personalised treatments to acute and chronic pain.
Image credit: - Unsplash

References

Glossary

[SNP]
SNP stands for 'single nucleotide polymorphism' and refers to regions of DNA that vary between individuals.