Reduced Vitamin D Levels And Peripheral Neuropathy

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tex
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Reduced Vitamin D Levels And Peripheral Neuropathy

Post by tex »

Researchers have demonstrated that diabetes patients with painful peripheral neuropathy are likely to have a reduced vitamin D level. This probably also applies to those of us who have peripheral neuropathy that is not associated with diabetes.
Conclusions

We have demonstrated a significant difference in 25‐hydroxyvitamin D levels in well‐characterized people with painful diabetic peripheral neuropathy, while accounting for the main confounding factors. This suggests a possible role for vitamin D in the pathogenesis of painful diabetic peripheral neuropathy. Further prospective and intervention trials are required to prove causality between low vitamin D levels and painful diabetic peripheral neuropathy.
Reduced vitamin D levels in painful diabetic peripheral neuropathy

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Post by tommyboywalker »

Excellent information, Tex. Thanks for posting that.....and spot on from my understanding as well.

I am doctoring for what is possibly Idiopathic Polyneuropathy in my left leg and foot. Non diabetic.

My vitamin D level originally tested low at 21 ng/ml. While that number is in spec but on the absolute low range of 20 ng according to the Institute of Medicine, both doctors that I have consulted with recently felt that my test level of 21 is woefully inadequate. Both doctors feel that I should be in the 50-60 ng/ml range for vitamin D.

So I have been supplementing (more) for 6 months and although vitamin D blood levels don't generally come up quickly, 2 weeks ago I tested at 35 ng/ml, which is up from 21, so I am heading in the right direction! My symptoms of neuropathy are for certain a little better and we attribute that to increasing vitamin D.

The functional medicine doctor that I just visited when I had stem cell therapy on my arthritic knee (the field of regenerative medicine is promising and exciting!) said that he feels that vitamin D is the most important vitamin that he recommends, important to every cell in the human body. He said we have lower levels of "D" in Minnesota where we get less outdoor time and sunlight than many other parts of the country.
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Post by tex »

Sounds as though you have found some good doctors.

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Post by Pebbledash »

Thanks for posting, Tex.

I've taken vitamin D supplements everyday since my Celiacs diagnosis when I was found to be low.

Paul

PS Tex, do you know much about Nortriptyline and Gabapentin?
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Post by tex »

Paul wrote:PS Tex, do you know much about Nortriptyline and Gabapentin?
I'm sorry, but I'll have to plead ignorance. I know very little about them, unfortunately. Basically, all I know is that antidepressants are sometimes prescribed to treat IBD symptoms (hoping that they will reduce cytokine production), but in some cases, antidepressants can trigger MC, especially after long-term use. Gabapentin is sometimes prescribed for IBDs, but it's unclear how it works, so it may or may not be beneficial. It's probably more beneficial for Crohn's patients — I'm not aware that it's been shown to help MC patients. But I'm also not aware of any tendency for it to trigger MC reactions.

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Post by tommyboywalker »

Pebbledash wrote:Thanks for posting, Tex.

I've taken vitamin D supplements everyday since my Celiacs diagnosis when I was found to be low.

Paul

PS Tex, do you know much about Nortriptyline and Gabapentin?
Paul,

I have been taking 1800 mg of Gabapentin for about a decade now. I was prescribed this drug by my doctor off label to help with the burning nerve pain of Complex Regional Pain Syndrome, which I contracted after a foot surgery.

While I'm not crazy about taking this drug as it does have a significant side effect profile, I tried not taking it and then tried reducing the dosage and life was not so good, so I've been stuck at 1800 mg now for some time.

Personally, I really haven't seen any evidence that it is related to my Microscopic Colitis. It certainly wasn't a cause of my MC as a parasitic infection was the cause for me, and taking Gabapentin doesn't seem to affect my MC.

Hope this helps!
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Post by Pebbledash »

Thanks Tex and Tommy,

The long and short of my situation is that I have been on low dose nortriptyline for one year now, to manage my peripheral neuropathy (my symptoms tend to be paresthesia).

When I tried to taper the dose, the symptoms got more noticeable, so it does seem that nortriptyline has some positive effect.

However, I have had calf fasciculations for some time now, and these seem to be spreading to other parts; I've read that gabapentin might prove somewhat beneficial (and that nortriptyline can actually aggravated fasciculations), so I'm thinking of changing to gabapentin.

Paul
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Post by Pebbledash »

By the way, Tommy, hope things are still well with your Budesonide treatment. Your words of advice and support really helped me when I needed it.

I'm on week 4 of 2 x Budesonide per day. I'm not perfect, but managing generally well. Whether I'll ever be able to taper off Budesonide completely is open to question . . . that's for another day.

Does Gabapentin have noticeable side-effects?

Paul
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Post by tommyboywalker »

Pebbledash wrote:By the way, Tommy, hope things are still well with your Budesonide treatment. Your words of advice and support really helped me when I needed it.

I'm on week 4 of 2 x Budesonide per day. I'm not perfect, but managing generally well. Whether I'll ever be able to taper off Budesonide completely is open to question . . . that's for another day.

Does Gabapentin have noticeable side-effects?

Paul
Hey Paul,

That is what this forum is all about, right? Support and share advice and best practices so others with MC can benefit! I check into this forum every single day, sometimes more than once a day. Invaluable resource here for certain.

As for side effects of Gabapentin, I had some issues with "dry mouth" for the first few months, but that did pretty much go away. I would say the main issue with this drug is a bit of mental "brain fog", where you might not be as sharp as you were prior to taking it. Concentration, focus, etc. But life without Gabapentin is pretty rough for me so I continue to take it.

I'm really glad to hear that you are doing well at this point with where you are at with taking Budesonide.

I was down to taking 1 Budesonide every 5th day and doing extremely well and then on November 15th, I had stem cell therapy on an arthritic knee. They take stem cells from bone marrow removed from both hips, separate the stem cells from the other parts of the bone marrow, and reinject those stem cells into my knee. They also take blood and break that down to plasma rich platelets, which are also injected. Stem cells have the capability to become pretty much whatever the joint needs them to be; cartilage, soft tissue and even bone. Regenerative medicine is pretty cool, evolving and growing in leaps and bounds. I would probably have just had a total knee replacement, but because I have Complex Regional Pain Syndrome in my right foot and with the likelihood that the CRPS can spread to other areas of the body that experience trauma, my orthopedic surgeon didn't want to perform the knee replacement and I didn't want to have it! So I'm now 3 weeks post stem cell. Little to early for improvement, it takes a while for stem cells to build. Most healing occurs between months 2-6.

So anyway, the recommendation when having stem cell therapy is to not be taking any kind of steroids so as not to get in the way of the stem cells hooking up. Budesonide is not as systemic as other steroids, and my stem cell doctor said that I could take a small amount of Budesonide if I really needed to, but I wanted to be doing everything I could to help with success of the stem cells. I wasn't quite at the planned end of my Budesonide taper but I was very close so I just stopped taking it and have been doing pretty well.

I did have about 5 days after Thanksgiving that were what I would call "shaky" GI, but it's virtually impossible to know what caused that. Managed that with Imodium. Could be the antibiotics I took during the stem cell therapy, could be all of the additional supplements I took for stem cell healing that messed with my GI, could be that I got a little cross contamination of gluten in food at Thanksgiving dinner; could be stress of a recent breakup with my girlfriend. Or could be a combination of things! Just too many variables to know. But I'm happy to report that the GI "shakiness" seemed to be very temporary and I'm heading back on the right path again!

One of the problems I think with MC is that we are so afraid that any GI shakiness in the bathroom might be a flare or even a relapse of MC, when it really could be just a few off days; which most of us have once in a while. And I certainly did even before I contracted MC. Sure did get me nervous, but every day I am building up more confidence that the GI shakiness was short lived.

Keep us posted on your progress, Paul.....and like all of us here...... gotta stay the course!
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Post by Pebbledash »

tommyboywalker wrote:I was down to taking 1 Budesonide every 5th day and doing extremely well and then on November 15th, I had stem cell therapy on an arthritic knee. They take stem cells from bone marrow removed from both hips, separate the stem cells from the other parts of the bone marrow, and reinject those stem cells into my knee. They also take blood and break that down to plasma rich platelets, which are also injected. Stem cells have the capability to become pretty much whatever the joint needs them to be; cartilage, soft tissue and even bone. Regenerative medicine is pretty cool, evolving and growing in leaps and bounds. I would probably have just had a total knee replacement, but because I have Complex Regional Pain Syndrome in my right foot and with the likelihood that the CRPS can spread to other areas of the body that experience trauma, my orthopedic surgeon didn't want to perform the knee replacement and I didn't want to have it!
Tommy, that's amazing! Can't say I know anything about stem cell therapy. When you say that you would have had "total knee replacement" are you referring to a completely different kind of treatment, or a more extensive use of stem cell therapy?

Is the idea that the stem cell therapy regrows worn cartilage?

Presumably, if all ends well, the stem cell therapy would be a more "natural" replacement for worn cartilage than having a prosthetic knee joint--and therefore, better?

Cheers
P
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Post by tommyboywalker »

Yes Paul, the idea with stem cell therapy is that it can grow new cartilage and repair other soft tissue and bone on the knee, but the cartilage is what most arthritic knees are lacking. Imaging showed that I had enough cartilage left to make me a decent candidate for stem cell. If the knee is bone on bone, stem cell won't work, but if there is some cartilage and they can land the stem cells onto that cartilage, those cells realize what they have landed on and create more.

Total knee replacement is a big deal and a somewhat major surgergy. But results with knee replacement are quite good. Basically the entire knee is physically cut out below and above the knee and an artificial joint is surgically placed.

While I may have to have a total knee replacement somewhere down the line, my hope is that this stem cell therapy buys me time. Whether that period is 1 year, 3 years, 5 years or longer.... I guess I will find out!

Cheers!
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Post by Pebbledash »

Amazing, Tommy. I have slight knee arthritis so I know a little about it. Mine is relatively mild and mostly controlled by tempering activities. I do know that cartilage is problematic because it doesn't have the ability to regrow on its own under normal conditions.

Hoping that this works out for you--quite amazing to think they can do this.

Cheers
P
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