Butterflies and Multiple Sclerosis

https://youtu.be/io6Yi_z7SpY

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

Pickle Juice

As I mentioned, this blog jumps around some.  This talks about Pickle Juice. Hype or Real.  Last year, as I was just reminded, from the Multiple Sclerosis Magazine,  I asked one of the Sponsors of the Bike Marathon, that had a booth for Multiple Sclerosis bike riders if the Pickle Juice they had, would help my  Spasticity with Multiple Sclerosis.  I would of loved the bike ride up the coast, and the wineries along the way.  I've ridden 50 miles once, but that was thirty decades ago. Knowing the Charlie horses or tight muscles are different then the ones for Multiple Sclerosis.  This I knew first handed, but was still curious if they had a product that would help.  We see a lot of bike trainers using our steep mountain roads to train on where we live, at 3,000 ft elevation.


Pickle Juice sent me a six pack of their product to try.  picklepower.com
 I checked with my neurologist if he was opposed for me to try. He said bike riders get muscle cramps from imbalance of electrolytes by peddling so hard for so long.

In Multiple Sclerosis, it's the sheath coating from the brain mis firing signals to calves, or other muscle groups, that cause them to tense up, or become Charlie horsed, and stay Charlie horsed until the signal from the brain let's up.

Giving pickle juice a try, yes it taste like fermented pickle juice, but without the pickles. A interesting product, as in its own bottle.  I would think gym training athletes, or bike riders that are needing quick electrolytes, or others on a rigorous routine would benefit that need the electrolyte balance, and from real fermentation of pickles, instead of a sweet drink.

It was a no go for my Spasticity however.

  I use some odd concoctions already.
Baclofen, I am maxed out on. A baclofen pump to be implanted has already been turned down years ago from reading some other blogs.

A small amount of diazapam is split up to help during 24 hours. I make my own oils from the marijuana plant, along with using alcohol to make other tinctures.  I am still looking for the proper combination or strain of the plant to utilize. If anyone has recommendations, or seeds, let me know.

I make my own quinine to obtain 30 mg. The same quinine used to make a Gin and Tonic water, just without the Gin.

 See my blog on Quinine-toxic-or-helpful? . A shot glass usually relaxes Charlie horses muscle.  This Needs followed by a neurologist and cardiologist, and may not be for everyone.  I do not have a gag reflex, as a swallowing study done showed

More interesting items is Mustard. A Tablespoon of plain yellow mustard has properties that science can not explain, as when it hits the stomach, it's effects start to release muscle cramps.
Sometimes it is slower than quinine, but works.

So if you are a avid bike rider, I would put a bottle in my pack, And give it a ten star. Worth trying picklepower.com

If you are a company, wanting me to review a product, let me know.

As for others, let me know what help with your Multiple Sclerosis cramps, Charlie horses, muscle twitches, the MS HUG, or different parts of the body, what muscle groups have the most problems.

My Neurologist, injects  onabotulinum toxin A into my calves, and into my neck muscles to calm these mis firing nerves, that cause me problems. It helps tremendously, and has kept me walking with a cane.  He is limited by insurance to doing this every three months.  It only last for about 62 days with me, and others.

Ampyra is used also, that has definitely helped me.

Thank you for reading
JoeY

https://rarepatientvoice.com/EverchangingMS/