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Old 01-27-2015, 01:07 PM #11
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Also consider doing a phone consult with someone not in your area. Livewello also takes 23&me raw data and spits out report. They had a small list of doctors and one, Dr. Nancy Mullan does do phone consults.

https://livewello.com/practitioner
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Old 01-28-2015, 09:11 AM #12
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Beatle: I seem to recall a post --- was it from you?-- about previous fluoroquinolone use?

If that is correct, then you have more than one thing going on, and the MTHFR is only part of the PN issue.
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Old 01-29-2015, 08:50 PM #13
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Interesting. I am compound heterozygous. I am not really sure how this affects health.
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Old 01-30-2015, 08:32 AM #14
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Originally Posted by cyclelops View Post
Interesting. I am compound heterozygous. I am not really sure how this affects health.
If you cannot methylate properly, you will become very low in active B12 and folate. Methylation reactions also make and balance neurotransmitters and do many other things. You can look that up on Google.
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Old 01-30-2015, 09:07 AM #15
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Mrs. D, that was me. I was on Cipro for six months (that's right, six months) but it was several years ago. I did not experience any neurological symptoms at that time though so I don't know what part, if any, it had in where I am today (I was dx'd with IPN August 2012).

I have discussed the Cipro history with my current doctor and as with most potential causes, his response is that we will never know so we should not spend too much time thinking about them as it would not change our course of action (treating symptoms). He tries to understand and be supportive which I think can be difficult for someone who has not experienced NP.

As my PN progresses, it becomes increasingly more challenging to enjoy my life so I do spend a lot of time researching, looking for potential causes, trying to figure out how I can halt the progression. What is intriguing about MTHFR is that I have those two bad mutations of a gene that many studies point to neurodegenerative diseases among other things. Sounds like a potential cause of IPN to me.

I think my doctor views me as experimental and he would be right. But I have to be this way. Too little is known about PN, and not enough is being done. I can't give up.
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Old 01-30-2015, 10:00 AM #16
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I think we all present an "experiment" to our doctors.

Mine in particular seems to groove on it... first: was my malrotation of the GI tract that she discovered...very rare.
second: was my angioedema diagnosis following the lisinopril reaction, and thirdly...my lisinopril reaction which she said was her first patient to have one like that! 40 yr practice.. and I gave her 3 rare problems during that!

The best doctors are those that rise to the occasion and actually enjoy the challenge.

I am also intrigued by radiation and nano pollution causing nerve damage. I saw a science show that demonstrated all the particles that go thru our bodies daily... it is sobering. If they hit a strand of DNA and damage it, then you take a DNA damaging drug, then inhale the pollution in our air that damage further...well...that all adds up.

I am getting to a point now, with my Candida cleanse which is painless and really working well...that soon I will be suggesting it to those here who seem stuck with that idiopathic diagnosis.
Taking that Cipro for 6months would have really killed off the beneficial organisms in your gut... Perhaps you should try to replace them now? And get rid of the Candida overgrowth that is sending out toxins into your blood all day long!

Candida Support by NOW... and using Kefir or a good probiotic with many strains staggered with it , to see if that helps. I really became so ill with this broken molar before Xmas, and so I started a Candida cleanse on advice from a friend, and it is working already.

I am going to do a good search in a few days for really complete formulas for probiotics. They tend to be expensive, much more so than the NOW product, but they are worth a try I think.
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Old 01-30-2015, 01:27 PM #17
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I found this interesting article on folate and folic acid, along with hundreds of responses.

http://chriskresser.com/folate-vs-folic-acid

Beatle, look for a response by "ccarr" who shares with you a double-whammy on C677T.
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Old 06-04-2015, 04:58 PM #18
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Hi Janie, just wanted to thank you for posting the link to this article. I am currently researching the pros and cons of supplementing with methylfolate, and I especially found the comments at the end of the article to be quite interesting.

The author mentions that most multivitamins still contain folic acid rather than folate, which I’ve found to be mostly true. I’m having difficulty finding one that has folate without also containing high dosages of other nutrients that I don’t particularly want. If I move forward with this, I will probably have to add methylfolate as an individual supplement.
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Old 08-28-2015, 11:23 PM #19
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It sounds like progress is being made with MTHFR in some areas...

Testing DNA to find best meds to fight depression

http://www.chicagotribune.com/lifest...827-story.html

"Most significantly, testing showed Mandy had a single mutation in the MTHFR enzyme critical in metabolizing folate found in foods or vitamin supplements. Researchers showed in the 1960s that folate deficiency could trigger depression. Genetic testing can reveal enzyme mutations linked to commonly consumed drugs and vitamins.

Rosenbloom gave Mandy a prescription form of processed folate, l-methylfolate, that can cross the blood-brain barrier and switch on enzymes that would help her metabolize antidepression medicines such as Wellbutrin."
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