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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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ADENOSYLCOBALAMIN, THE VERY LARGE GORILLA IN THE ROOM

heyitisjustin

Senior Member
Messages
162
It's possible it has helped my POTS, but I am not sure. My pulse has been much more stable lately.

I am hypermobile and my connective tissue isn't strong. I hoped vitamin K would help, but as I said, no dramatic effect.

I have both POTS and hypermobility. Do you have any diagnoses linking the two? I don't recall hearing of any.

Have you looked into whether you have mitral valve prolapse(MVP)? I have dysautonomia which is usually POTS + MVP.

Do you have any other diagnoses? I have problems sleeping/recurring illness/depression/anxiety. I also have problems handling histamine. I hadn't heard POTS and hypermobility mentioned together, I am wondering if we share some common problem/genetics
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
I have both POTS and hypermobility. Do you have any diagnoses linking the two? I don't recall hearing of any.

Have you looked into whether you have mitral valve prolapse(MVP)? I have dysautonomia which is usually POTS + MVP.

Do you have any other diagnoses? I have problems sleeping/recurring illness/depression/anxiety. I also have problems handling histamine. I hadn't heard POTS and hypermobility mentioned together, I am wondering if we share some common problem/genetics

Hi Heyitisjustin,

I have been having connective tissue failure increasingly the past 5 years. I had sleep disorders. depression and other mood problems, apparent high motor neuron damage (Sub Acute combined degeneration type demyelination lesions) and muscle weakness in legs and arms. It came along with brittle nails and hair, spider veins, varicose veins, and a different kind of gum disease. My upper jaw gums melted away in 5 years causing all the roots to be exposed and infected but no infection down in the gums and no bone damage. They looked cyanotic and inflamed My doc and I figured out copper, tested it and it was right at the bottom of range. In two months of copper my gums normalized in appearance but for my upper jaw it was too late and all the teeth had to be extracted so I have an upper denture.

I also had 1 episode of POTS. I don't have hyper-mobility. My connective tissues were falling apart. The most visible changes in recovery has been my gums; both oral surgeon and dentist commented that I was healing unexpectedly well and my gums have unexpectedly normalized visually. And the smallest spider veins have disappeared and some others are "fading" visually by the week. The copper deficiency caused some parts of methylation fail in a peculiar pattern as I described. Refeeding syndrome pointed right at copper as one of the minerals that fails when healing puts extra demands on the body's supplies. Good luck.
 

heyitisjustin

Senior Member
Messages
162
Hi Heyitisjustin,

It came along with brittle nails and hair, spider veins, varicose veins, and a different kind of gum disease. My upper jaw gums melted away in 5 years causing all the roots to be exposed and infected but no infection down in the gums and no bone damage. They looked cyanotic and inflamed My doc and I figured out copper, tested it and it was right at the bottom of range. In two months of copper my gums normalized in appearance but for my upper jaw it was too late and all the teeth had to be extracted so I have an upper denture.

Refeeding syndrome pointed right at copper as one of the minerals that fails when healing puts extra demands on the body's supplies. Good luck.

Thanks for your help/wishes.

I also have gum problems (exposed roots, but they've been progressing slowly) and will have to have my copper checked.

I hadn't heard of Refeeding syndrome. I might have been ketogenic for a while and am often still on the low carb side. When I restarted higher carbs as an experiment, things didn't shift much so I assume that I am not suffering from this. That being said, I am still not sure how this affects people who are low carb sometimes. It doesn't sound great, but I'd hope a not starving fat centric diet would be safe. Thanks for all of your wisdom
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Thanks for your help/wishes.

I also have gum problems (exposed roots, but they've been progressing slowly) and will have to have my copper checked.

I hadn't heard of Refeeding syndrome. I might have been ketogenic for a while and am often still on the low carb side. When I restarted higher carbs as an experiment, things didn't shift much so I assume that I am not suffering from this. That being said, I am still not sure how this affects people who are low carb sometimes. It doesn't sound great, but I'd hope a not starving fat centric diet would be safe. Thanks for all of your wisdom

My copper came in at 74 with the "low in range bottom" being 72. So symptoms and a trial made all the difference. I suspected a response in 4 hours and was sure in 24 hours. I was getting really bad really fast and didn't wait for the results. The doctor was concerned with how fast and bad things were getting and called me on Monday, before the results were back. She was relieved to find out I started copper on Saturday and had already stopped worsening. I don't think carbs make much if any difference on this. The only thing that normally causes copper deficiency in this way is active healing. Potassium is usually a fast, and potentially dangerous induced deficiency and copper takes longer but is also a common refeeding syndrome needed nutrient. Refeeding syndrome basically occurs when cell making slows or stops building up a backlog. and then starts up again. 3 days after starting copper, I had an increased need for potassium of 400 mg daily. Ask you dentist if the gums are cyanotic in color and inflamed. Infection is optional in this situation and I didn't have gum infection.
 

adreno

PR activist
Messages
4,841
I have both POTS and hypermobility. Do you have any diagnoses linking the two? I don't recall hearing of any.

Have you looked into whether you have mitral valve prolapse(MVP)? I have dysautonomia which is usually POTS + MVP.

Do you have any other diagnoses? I have problems sleeping/recurring illness/depression/anxiety. I also have problems handling histamine. I hadn't heard POTS and hypermobility mentioned together, I am wondering if we share some common problem/genetics
Hyperelastic veins have been linked with POTS.

I don't have any diagnosis. If I have MVR then several doctors have missed it.