Have you found success in dealing with your symptoms? Use this forum to help others learn of your success.

Teenage daughter has struggled two years with disease. After many test indicated she was not absorbing B12 she started taking B12 shots in December. After four injections she is much improved. She is back in school full-time (after being homebound for two years).

Suggestions:

See and endocrinologist to see if your body is producing vitamins.

See GI doctor to see if your body is absorbing vitamins.

B12 shots were started after scope indicated lining of stomach was too thin to absorb B12.

Good Luck!

Thanks for sharing about the Vit B12 shots and how they went about finding the prob. Hope you will keep us updated on how things progress! It's WONDERFUL to hear progress!!!!!

We saw a pediatric neurologist at childrens hospital in houston that told us research was indicating POTS pts had vitamin defiencies.

My daughter had many low vitamin counts including vitamin D which is rare for people that live in US. The doctor stated with low vitamin D he was certain her body was not absorbing properly.

She still has bad days but the good days are HUGE.

quote:

Originally posted by sjwright:
We saw a pediatric neurologist at childrens hospital in houston that told us research was indicating POTS pts had vitamin defiencies.

My daughter had many low vitamin counts including vitamin D which is rare for people that live in US. The doctor stated with low vitamin D he was certain her body was not absorbing properly.

She still has bad days but the good days are HUGE.

Hi sj,

Glad to hear your daughter is doing better. And thank you for posting about it.

I'm very interested in this vitamin stuff. Because of intolerances to many foods etc I know I have to be vitamin deficient. The foods I can eat are generally not that high in vitamins and no one recommends you stay on such a strict diet for long. However, every time I try to branch out and eat a greater variety of food I find my symptoms of erythema get worse, so I have to back off.

Since making sure I get my 'sun fix' every day, I feel much better. As soon as my the new medication that I started today proves if it's going to be a friend or foe and whether I can continue on it or not, I will be starting to take a good multivitamin next.

It's good to hear of a success story. And if you get any more info from your daughter's doc about pots and the connection with vitamin defiency I would be appreciative if you would pass it on, here.

I had low Vitamin D as well. Since a lot of us have rapid and delayed gastric emptying, a lot of us aren't absorbing properly. I noticed of dimpling in my arms and legs appearing - it was Vit. D deficiency. Best of luck to you.

Comment re B12, Vit D, folic acid etc. I discovered through lab tests that I have genetic mutations that do not allow me to absorb the usual form of B12 and folic acid. Also Vit is often sold as D2 and we really need D3 (more expensive.

The answer, which is working marvelously, for me on the other two was to take another form that I could absorb. For B12 it is hydroxocobalamin rather than cyanocobalamin--B12 has to go through several tranformations from the cyan form to get to the form the body can use. I can't make that transformation, so take an already transformed form. Also we need intrinsic factor (made in the stomach) to absorb 12 and if you have digestive problems you may not be making enough. It also declines with age. I supplement that too.

And instead of folic acid I take 5-tetrahydrofolate, sold as FoloPro by metagenics and again it has already gone through the transformation process my body can't do.

Incidently, a new anti-depressant called Deplin is nothing but this transformed form of folic acid that is easily available without a prescription.

So even if you take B12 injections you might want to ask your doctor about the hydroxo form which is also available for injections or some people take it as inhaled, nebulized hydroxo... and it it absorbed directly into the blood stream.

Just more info on our complex biochem situation. But I would also recommend getting a good panel of vitamin, mineral, amino acid and neurotransmitter levels. It is enlightening and will give you and your doctor lots of clues as to how to proceed.

Hi all. I have EDS. My dysautonomic symptoms are orthostatic hypotension, POTS, gastroparesis, other GI issues, bladder issues, irregular temps (high fevers for no good reason), MVP, 2nd degree av block.

I had learned a long time ago that many of my symptoms improve or go away completely with dietary changes. For me cutting out refined sugar, dairy and caffein helped a lot.
I was doing a modifeid macrobiotic diet.

When I learned I had gastroparesis I thought it was odd the foods the GI doc told me to avoid.
It is true that many of the high fat and high fiber foods can cause my stomache to slow right down and weaken, but ONLY when I am not eating well. Otherwise fat and fiber in general are not bad for me.

My daughter also has many auotnomic symptoms, but she also has a brain injury as well as epilepsy.
Meds were not helping her seizures so we went on a dietary treatment for epilepsy. Thankfully this helped her seizures ... fortunatley I also found it seemed to help with some of her autonomic symptoms as well.
The diet is a modified keto diet, which happens to be quite high in fat ... and I do lots of good healthy fiber. All of the foods must be low glycemic. Everything she east is whole food, we do nothing processed.
Interestingly even though both our diets ar high fat and high fiber, it has helped both of us with our GI issues.