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*Update* 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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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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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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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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  • 2 months later...

I don’t know why it takes me so long to try something, but here I am after months of procrastinating... I am finally getting my lumbar puncture tomorrow!!!

As is generally the case when you’ve tried and failed dozens of treatments, I’m pretty scared to even think about the results and possibly that’s why I put these things off... if this test comes back negative, I’m probably at another dead end... and I’m getting pretty desperate; my condition was somewhat stabilized for about a year and a half... but the last few months it seems to be getting worse. I need a damn solution to this.

Anyway, just wanted to share that and note that I’ll post my results as soon as they come in! My spinal fluid gets shipped off to Texas or something so no idea when I can expect results, but hopefully soon!

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  • 2 weeks later...
  • 4 weeks later...

Well after waiting 5 weeks for results(instead of the two I was promised) I got my results... negative for cerebral folate deficiency :( sigh.... sucks.

However, all hope is not lost... they tested my spinal fluid for I think 1000+ metabolites, and I have over a dozen abnormalities. Unfortunately, I have no idea if even the researchers know much beyond that... my pdoc says it’ll take him at least the weekend to parse through all the data from this test. He’s also apparently sending out my sample to another research institution to look into things further. But hopefully I’ll have more “leads” in a week or so after he goes over the data.

While it really sucks that I don’t have CFD (that would have been an easy solution), I’m still grateful that somebody is actually trying to get to the bottom of it. I still don’t know how I got so lucky to find this doc but this is how medicine should be practiced; not like all the others who flipped through their flowcharts of medications and gave up or passed me on when they were exhausted.

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  • 2 weeks later...
Interesting developments regarding my situation. 
 
TL;DR- Some results are back, CFD is inconclusive, I have “dozens” of other CNS metabolite abnormalities that they’re looking into; one includes a vitamin C deficiency so pdoc advised trying high dose vit C; discovered that OTC folinic acid is 1/100th the strength I would need so I can’t just try it. And in other news, I have Asperger’s Syndrome(!) and it may even be related to all of this.
 
 
So... this is bizarre but I very recently discovered I have Asperger’s Syndrome (aka Autism Spectrum Disorder). Wow. What a revelation. It’s unbelievably coincidental that I just happened to research it... and now I’ve discovered that CFD (cerebral folate deficiency) is associated with ASD and according to some studies, the treatment (folinic acid) greatly improves symptoms, of which depression is one. In fact if you google folinic acid, you’ll see a lot of articles linking it to autism, so it seems it’s all related.
 
Meanwhile, I got some results back... and they’re somewhat inconclusive. I’m a bit fuzzy on the details (had a brief phone conversation with my pdoc), but they’re not sure if I have CFD. However, I DO have some kind of vitamin C deficiency in the brain/CNS; I believe my pdoc said I had low oxalate, which is a breakdown product of ascorbic acid (vit C). Significantly low (2.5 standard deviations lower than normal). This is all pretty new research, so he didn’t even know what dose to tell me, but he said if I wanted to, I could try taking a “high” dose of vitamin C to see if it helps.
 
It’s hard to find any info on levels of metabolites in the CNS, but some research I did DOES support taking vitamin Cfor depression... I’ll have to find the studies and link them when I can. Interestingly, there’s quite a bit of evidence suggesting oxidative stress may also be implicated in ASD, and of course vitamin C is a great antioxidant; it’s been suggested as a therapy for autism as well.
 
So I’m gonna try taking 1000 mg/day of plain old ascorbic acid and see what happens! Not sure what I’ll do if after 12 years my depression goes away by taking freakin vitamin C.
 
Despite the inconclusive CFD results, I WOULD simply try taking folinic acid, as I’d be pretty surprised if I don’t have some kind of folate issue. It’s available OTC, buuuut.... it’s generally available in 800 mcg doses... treatment for both autism and depression uses 1 mg/kg, which for me translates to ~70 mg, almost 100x the available dose. It’s available by prescription in 5-25mg doses, but of course that’s off label, sooooo who knows about getting that covered.
 
So as fascinating as this all is, if it pans out, it’s probably a somewhat rare condition; so this may or may not be helpful to anybody but the very treatment resistant. But it does seem like CNS metabolism is an “untapped” area (literally) that deserves more attention. In rereading the original study I linked, it stood out to me that 64% of participants with TRD had CNS metabolic abnormalities while NONE of the healthy controls had any. There have been other metabolites linked to TRD besides folate, so I think if you’ve tried everything and nothing works, finding a way to get this test would be worthwhile.
 
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Important update... I emailed my pdoc about taking folinic acid preemptively (which is difficult to do in high doses given OTC doses), and he responded with “High dose folinic acid makes non-CFD people worse. Hunter 1970 Lacet.” So in case anybody comes across this post and wants to try it, probably want to find a way to get tested.

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