Niacin is my enemy
 

Wow, what a few days it has been. I feel like I died, came back to be tortured, and am slowly coming back to life.

Last night I tried to wean myself off of the water bucket as I cant live like that and I know its a bad cycle. I forced myself from 10pm to 4 am then gave in for my left foot.

At 7am did it again and praise God, still going strong. The cycle has been broken but I totally believe it was the niacin that sent me over the edge. I still believe I have EM all symptoms point to it. I am still going to neurologist. Today is my dr app with my primary he refused to give a referral without seeing me. Then I will get app for next doctor.

I think it took days for that niacin to get out. Im still not good but I have been confined to the couch for 4 days, just going to the bathroom would make them swell to balloons and flare. Today I got showered, used my chi machine, et and still ok, no water bucket just my fan now.

Thought I would let you all know.

I'd also get your DNA tested for the MTHFR mutation.

Errors in methylation, as I quoted to you last week, and Marlene
suggested just recently, may explain your intolerance to Niacin.
(You were not using Niacin BTW, but non flush version called
inositol hexanicotinate). The latter retains some vitamin actions, but is not Niacin and should not cause flushing at all.

This post:
http://neurotalk.psychcentral.com/post1059073-12.html

COMT is a methyl transferase and a genetic mutation in this enzyme involves methylation failures.

If you google, "methylation errors", or "under methylation", or the Pfeiffer Institute as qualifier you will find more.

I would also think getting a heavy metals screening might be useful when you get your testing done at the doctors.

Stacy, I am glad you are a little better and I hope you continue to stop swelling and you find a good doctor that knows what do to.

I hope they can do the testing Mrs D talked about. Some of those problems are very common.

I cant believe how good I am doing, well relatively speaking. From death to life, like a light switch turned on. I have been drinking chlorophyll to clean my blood out as I have believed niacin was the culprit and as fast as this left I think I am correct.

MrsD I will take your advice to heart and I copied your post. I was reading about EM last night and it talked about metal toxicity.

Thank you MrsD for always helping out.

And thanks Sally!! Im praying I am on my way to find some answers. I have avoided this as I feel in the end all it will lead to is a lot of bills and no answers and just pain meds, but it is time to do it anyway.

over/under methylation
 

Here's a case study on how niacin can upset the balance of things. Even though your issues are different from the patient in this link, it's a good example of how quickly things can be imbalanced when you have one or more of the mutations.

Mrs. D suggestion to tested for MTHFR mutation is probably a good idea. It's all very complicated and knowing what you're dealing with can help you manage your supplements.

Glad you're coming out of this tailspin.

http://mthfr.net/overmethylation-and...dy/2012/06/27/

Thank you Marlene I will put this on the table when I go to the doctor. Every little thing helps to put the pieces together.

You didn't include a case study?

Just added it to post....thanks

That is a nice link, Marlene...the subject is complex and difficult to understand. I think many doctors are clueless about it too.

I had a DNA test several years ago just for kicks and it references the MTHFR gene here:

We evaluated the following markers:

Gene: MTHFR

Marker: rs1801133

Your Genotype: T/T

Does anyone know what this means? I hope DNA test results have become easier to decipher than when I did mine.

I believe that :

from http://snpedia.com/index.php/Rs1801133
This link has a more complete explanation.

Your TT means you do not methylate properly so should be using methylB12 and methylfolate.

So glad you have come out of that hellish spiral. :)

I'm hopeful it was indeed the niacin so that a similar flare can be avoided in future.

I am not really out of it. I am still on the couch all night, sleep 2 hours then wake and must put in water to bring down swell and pain and its a cycle.

Day time is a little better but I still cant walk much, if I am on them longer than 15 minutes, big flare. Not leaving the house much, I tried walmart with hubby yesterday and used the electric chair and they still flared.

Life is pretty miserable right now, and while I have an app. with neuro, I am not very hopeful.

I am sorry to hear this. I guess we all hoped that you were coming out of the tunnel. The neuro may be able to help you, if not with a cure at least with some effective medication so that you can get your life back and your feet out of the water. That scares me as I do not think it is good for you long term.

Hope this turns around soon

No, it is not good. I guess a drug induced coma is better. :/

Hi Stacy,
Where did you hear about the coma. Where you originally diagnosed with RSD? That is what they generally place patients in the coma for. Were you told what drug they use for the coma?
Hopeful

Hopeful, I just meant that for me, pain drugs always make me feel like that. I do not hold out high hope for my cure to come in the form of pain medication, it always seems to cause me more problems. Therefore, I do not have a lot of hope, since drugs are the answer, not cure.