IRON. IRON H63D gene Hereditary Hemochromatosis

      Its been a while, but refresher course in iron.   A double H63D gene was found  in 2018. A rare for it to overload iron over load, but did. 17 trips to phlebotomist, or vein puncture, to take blood from me. see prior posts.

Do labs every three months. I was left iron deficient for three years. I found if I stopped my turmeric curcumin regime  a day, and ate beef liver with onions, and restarted my regime, it brought my iron back into balance in 2022. A trial and experiment.

 As there had to be a way to close the iron valve.

Since I have Primary Progressive Multiple Sclerosis, some items get blamed, where there may be a different diagnosis. So thus bouncing between Drs, who all have their own theory.  Last October 2021, my hemoglobin was high again. To many red blood cells, or to large.  Thus prior you tube videos to explain. But No Iron to dispose of with a phlebotomy. 2022 was year I got iron increased, by trial. And testing.  A three year low, or anemia that played a part.

Labs again in a few months, to check, and double check endocrine system. A protocol, a Specialist put me on last year  in 2021 helps tremedously but that's for another blog.

I receive Botox every three months. Injected deep into calves, inside and out, thigh muscles, and into neck muscles on both sides, and into right shoulder. The right arm was added last time.  Another blog to talk about, but helps a great deal.

But I did not want to loose these links that help understand... Just more info to listen to.

        

Iron Deficiency Without Anemia – Common, Important, Neglected

        Transferrin   Saturation

Another great site I found on iron, and related diseases

http://checkiron.com

                                                       Iron Physiology

Gastrointestinal | Liver Metabolism, Protein Synthesis & Storage

   

Approach to Anemia

Join my blog, so I know my readers!

JoeY

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.

Treatment

The treatment started with Copaxone injected daily in September 2012.

I had never needed pills or injections before. This is one of the Disease Modification therapies (DMT).  Copaxone,  (Glatiramer acetate) was chosen to try to slow my MS down.

Looking around the web, I found a young guy, named Matt Allen.  He has a blog I follow here :   http://mattsmultiplesclerosis.com

Matt also had a video, click here: Video of how to inject the Copaxone, as  Shared solutions, their company, did not have any video.  They were to send a nurse to my home to show me how to do this, but his video made me feel at ease, and led me to his blog.

Matt's  web site is quite detailed, and has explained his adventure with MS, and explains about MS.  His blog is always changing, and A great blog to follow since day one,

  Injections were easy for me, both manually and by their auto injector. The nurse was quite helpful, allowing me and my partner to learn injections, and sites, techniques, and practice, until ready.  I was skinny enough, that I did not need to change settings on the injector depth.   I am somewhere on the 2,880 th injection of copaxone daily as I write.  More on Copaxone in another blog.

But need to talk of Spasticity issues I was Having.


"Spasticity is a condition in which certain muscles are continuously contracted. This contraction causes stiffness or tightness of the muscles and can interfere with normal movement, speech and gait. Spasticity is usually caused by damage to the portion of the brain or spinal cord that controls voluntary movement. "

This was already a part of me since 2010. I quickly reached the Maximum amount of Baclofen, which is used to treat Spasticity.

By November 2012, my next treatment was with Botox.
 "Botulinum Toxin A"  injections went into into both calf muscles, neck and forehead by  My Neurologist.  He could feel which muscles were problem ones.

This was due to issues of cramping muscles caused by misfiring electrodes from my brain, going haywire, being caused by Multiple Sclerosis.  This had been going on for two years now, with stiffness, and foot lagging.  When I walked, I had to tell my foot to move forward.

Botox is only covered for every 90 days. After day 62-64 they botox wore off.  My Neurologist was trying to slow the progression down.  More in another blog.

He followed up with  VER test of eyes, and lower extremities. I did not do well on either test, but he needed a starting point to see progression, which was better than MRI, as it checked the speed of nerves from brain to toes in both sides.

Thanks for reading
JoeY