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climber47

My doc’s latest off-label treatment suggestion

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This may be more useful for people like me who have pretty much tried it all and are therefore stuck waiting for new research or for something new to come on the market.
 
On my 24th medication and still struggling, I am most definitely treatment resistant. My pdoc specializes in TRD and keeps current on the research. He works/networks with researchers in various places do he almost always has some cutting edge new treatment to suggest and he didn’t disappoint this time.
 
He told me about a new study that looked at metabolites not just in the blood but also the brain via spinal tap. The study (which only looked at subjects with TRD) found that 70% had a shared metabolic deficiency; they all had cerebral folate deficiency. It should be noted that their serum levels were normal, so a regular blood test would NOT pick up on CFD. Treatment involved folinic (NOT folic) acid; unfortunately, it can take 3-4 months to build up enough folate in the brain... but the trade off is that basically ALL subjects who had the deficiency and underwent treatment for better. 
 
It’s a small study of course, but my pdoc thought it was very promising, so he recommended I get the spinal tap to test for the deficiency. 
 
The test is sometimes covered by insurance, he thought out of pocket it would be about $1,000. And it does require a spinal tap/lumbar puncture, if that matters. 
 

For my part, if I could fix myself for $1000 and a needle in the back, sign me up! 

Anyway, I’ve always appreciated how my pdoc does so much research into novel treatments, I like to pass on his ideas, particularly for those with doctors willing  to try different things.

 
 
Edited by climber47
Crucial missing word
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How ‘bout just skip the 1000 bucks, take the folian acid and see where it goes?

Edited by Stephielove77
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I appreciate your Dr for being adventurous and you for posting the info to share. Your previous off-label experiments frequently show up in my searches of the archives. My Dr is somewhat conservative and says we are nearly out of options. I'm hoping he will consider some other off-label options.

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I think you should take the supplement and skip the test.

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Save your money, those L-Methylfolate supplements are crap, so is Deplin.  

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1 minute ago, gb84 said:

Save your money, those L-Methylfolate supplements are crap, so is Deplin.  

They do help some people though.

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Yeah, I wonder how many of those supplements are just Placebo effect. I've also heard Deplin brand name is very expensive... I do often wonder how can you know something is legitimate, especially if it is not regulated. It could just be twigs & ground up grass for all we know.

I will say, I've feel quite duped myself after much effort and spending loads of money in the past doing trials of just about every supplement, herb and amino acid. All to find that I felt no different. :(

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I have spent more on different L-Methylfolate supplements on Amazon than I would have on Deplin.  I just gave up on it all together. 

My DNA test shows the folic acid mutation, but the supplements just don't deliver the results. 

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57 minutes ago, Blahblah said:

Yeah, I wonder how many of those supplements are just Placebo effect. I've also heard Deplin brand name is very expensive... I do often wonder how can you know something is legitimate, especially if it is not regulated. It could just be twigs & ground up grass for all we know.

I will say, I've feel quite duped myself after much effort and spending loads of money in the past doing trials of just about every supplement, herb and amino acid. All to find that I felt no different. :(

Me too. Tons of money. No effect.

However, this particular supplement does seem to have research behind it and does seem to help some people. Not everyone, but some.

I may be wrong, but I believe that Deplin is regulated by the FDA. The other folate supplements on Amazon are not regulated so you don't know exactly what you are getting.

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This treatment is Not related to L-methylfolate or the MHTFR genes; and those also correlate with blood/serum levels of folic acid and derivatives... this study is unique because it looks at levels of folic acid in the brain; the subjects in the study had normal serum folate levels, but were deficient in brain folate levels. I asked about the gene because I DO have one of those mutations, but my pdoc says it’s not related to that, at least not directly.

 

I DID however ask him if you could in theory just take the folinic acid without getting tested. And yes, if you could get a doctor to prescribe it, and if you took it diligently for 3-4 months, you could see if it works. I’m pretty sure high doses are needed however and it seems to be only by prescription.

 

Personally, I’d want to know if I had the deficiency. He did say the test is sometimes covered by insurance, at least partially. But I’ve spent 12 years and tried so many treatments, for me $1000 is worth it, considering such a high percentage of TRD patients shared this deficiency. After all, at this point my only other treatment option is IV ketamine, and that’ll cost me a lot more than $1000.

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If you do the test, please post your results.  Maybe one day this will be an approved treatment. 

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On 06/11/2018 at 9:21 AM, Ion said:

I appreciate your Dr for being adventurous and you for posting the info to share. Your previous off-label experiments frequently show up in my searches of the archives. My Dr is somewhat conservative and says we are nearly out of options. I'm hoping he will consider some other off-label options.

My last 2 PDoc's have literally and openly given up on my TRD, and by extension, me. Being given-up on feels just about the worst it gets. 

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On 06/11/2018 at 5:21 PM, gb84 said:

If you do the test, please post your results.  Maybe one day this will be an approved treatment. 

Yes, please do. I've tried literally 100+ medications in all, dTMS, ECT and nothing sticks.

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