• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

I need help/supervision with methylation protocol.

veganmua

Senior Member
Messages
145
Location
London, UK
I'm waiting on my results from 23andme, but I don't know how I will interpret them. I am on a high dose of antidepressants -300mg venlafaxine daily. I understand that taking them while on the methylation protocol could cause me to develop serotonin syndrome. However I can't stop or reduce my dosage because I become dangerously suicidal on lower doses. Even at my current dose I struggle.
There's just so much complicated scientific information about it all and what I should take and what effect it has, I find it overwhelming. Obviously no NHS doctor will help, but I don't have the money for private doctors. At the moment I'm taking lots of antiviral herbs, oxymatrine is one of them.

Does anyone have any advice?
 
Messages
27
I don't have any advice as I am facing a similar struggle to you and just don't know how to get started in the face of all this extremely complex information. But I do understand the difficulty you face and wish you well. I don't even know if there are doctors here in the UK who are expert enough be able to help. All the best.
 

veganmua

Senior Member
Messages
145
Location
London, UK
I don't have any advice as I am facing a similar struggle to you and just don't know how to get started in the face of all this extremely complex information. But I do understand the difficulty you face and wish you well. I don't even know if there are doctors here in the UK who are expert enough be able to help. All the best.


Thanks. If I get any more help or info, I'll update this thread.
 

caledonia

Senior Member
Where did you hear the thing about serotonin syndrome? Was that from me or some other source? I'm now thinking this might not be the case.

I'm on Zoloft. I ran into a horrible withdrawal syndrome from trying to come off too fast, and I had to reinstate. What I'm doing now is very gradually tapering off the Zoloft, while gradually ramping up methylation. This time it's going better.

What I'm doing is reducing the Zoloft by 10% of the previous dose every 8 weeks. I started at 150mg. I'm down to 67mg after a year of tapering and am doing ok. At about the 6 week mark I get some withdrawal symptoms, mainly OCD thoughts, but they're mild enough I can handle them. I learned about this tapering technique from the Paxil Progress forum. There are many people there successfully using this technique to get off various psych drugs.

On the PP forum they're very conservative and are not in favor of taking any supplements, don't believe in neurotransmitter testing and so forth. They expect that people will be able to get off their drugs and then do ok with talk therapy.

Knowing what I know about methylation and mental illness, I disagree. I'm the only person getting off my drug while doing methylation as far as I know.

There could be several reasons why your drug isn't working great now, and why going lower makes you worse. Your drug could be pooping out if you've been on it for many years, or it's simply not the right treatment. Going lower and getting worse could actually be a withdrawal syndrome caused by going too fast.

Anyway, I think it's possible to do what I'm doing safely (so far). If you do decide to do this, you should be aware that you'll be a pioneer.

I think what I would do in your case, is get some low level methylation going first and see if that stabilizes your depression. Then trial a 10% reduction in your med for 8 weeks and see how it goes. You might get an increase in symptoms somewhere between 3-6 weeks, then it should clear. Then you'll know better how to proceed after that.
 

veganmua

Senior Member
Messages
145
Location
London, UK
Where did you hear the thing about serotonin syndrome? Was that from me or some other source? I'm now thinking this might not be the case.

I'm on Zoloft. I ran into a horrible withdrawal syndrome from trying to come off too fast, and I had to reinstate. What I'm doing now is very gradually tapering off the Zoloft, while gradually ramping up methylation. This time it's going better.

What I'm doing is reducing the Zoloft by 10% of the previous dose every 8 weeks. I started at 150mg. I'm down to 67mg after a year of tapering and am doing ok. At about the 6 week mark I get some withdrawal symptoms, mainly OCD thoughts, but they're mild enough I can handle them. I learned about this tapering technique from the Paxil Progress forum. There are many people there successfully using this technique to get off various psych drugs.

On the PP forum they're very conservative and are not in favor of taking any supplements, don't believe in neurotransmitter testing and so forth. They expect that people will be able to get off their drugs and then do ok with talk therapy.

Knowing what I know about methylation and mental illness, I disagree. I'm the only person getting off my drug while doing methylation as far as I know.

There could be several reasons why your drug isn't working great now, and why going lower makes you worse. Your drug could be pooping out if you've been on it for many years, or it's simply not the right treatment. Going lower and getting worse could actually be a withdrawal syndrome caused by going too fast.

Anyway, I think it's possible to do what I'm doing safely (so far). If you do decide to do this, you should be aware that you'll be a pioneer.

I think what I would do in your case, is get some low level methylation going first and see if that stabilizes your depression. Then trial a 10% reduction in your med for 8 weeks and see how it goes. You might get an increase in symptoms somewhere between 3-6 weeks, then it should clear. Then you'll know better how to proceed after that.


Thanks so much for your reply - I've been looking at some of the info on your signature - I can't digest all of it as I have some heavy duty brain fog going on (I suffer from ADD as well as CFS) but I'll look at it in small chunks when I can. I found the videos especially helpful.

I may have heard about serotonin syndrome from you, but I've definitely heard about the risk other places I've read. I've been told by my doctor to watch out for it due to the high dose I am on.

I may have to reduce my venlafaxine dose anyway, as I have been getting heart problems (palpitations, chest tightness, shortness of breath, and exhaustion) since the last increase. I will be talking to my doctor about it soon. I haven't tried going lower before, since I started the medication 2 years ago I've only ever had my dosage increased as I got closer to breaking point. My depression is treatment resistant, I've been on a variety of different antidepressants over the past ten years and although venlafaxine is the best I've tried, the most any of them ever do is take the edge off.

Obviously I won't start anything until I have my results and have made sense of them, but what would low level methylation involve?

Have you noticed a reduction of CFS symptoms whilst doing the methylation protocol?

Also I feel for you having withdrawal symptoms from zoloft. I once decided to come off citalopram cold turkey - I had the worst time of my life!

Thanks again for your help. From what I've read, methylation problems can cause everything I suffer from - CFS, ADD, extreme IBS, depression, anxiety. So even though it could be risky, especially without a doctor's supervision, I feel it's probably worth the risk. I have to try.
 

caledonia

Senior Member
Thanks so much for your reply - I've been looking at some of the info on your signature - I can't digest all of it as I have some heavy duty brain fog going on (I suffer from ADD as well as CFS) but I'll look at it in small chunks when I can. I found the videos especially helpful.

I may have heard about serotonin syndrome from you, but I've definitely heard about the risk other places I've read. I've been told by my doctor to watch out for it due to the high dose I am on.

I may have to reduce my venlafaxine dose anyway, as I have been getting heart problems (palpitations, chest tightness, shortness of breath, and exhaustion) since the last increase. I will be talking to my doctor about it soon. I haven't tried going lower before, since I started the medication 2 years ago I've only ever had my dosage increased as I got closer to breaking point. My depression is treatment resistant, I've been on a variety of different antidepressants over the past ten years and although venlafaxine is the best I've tried, the most any of them ever do is take the edge off.

Obviously I won't start anything until I have my results and have made sense of them, but what would low level methylation involve?

Have you noticed a reduction of CFS symptoms whilst doing the methylation protocol?

Also I feel for you having withdrawal symptoms from zoloft. I once decided to come off citalopram cold turkey - I had the worst time of my life!

Thanks again for your help. From what I've read, methylation problems can cause everything I suffer from - CFS, ADD, extreme IBS, depression, anxiety. So even though it could be risky, especially without a doctor's supervision, I feel it's probably worth the risk. I have to try.

Yes, you sound like a poster child for methylation problems. :)

I've had a bit of an increase in energy. I no longer need to take several supplements. I've been able to reduce some other supplements and cut my thyroid med in half. My adrenals are also about 75% better based on the amount of salt and magnesium I've been able to reduce. Reduction in MCS.

Low level methylation would be, say, under 100mcg for folate and B12. My upper limit is where I start to feel metal detox symptoms (flu-like joint and muscle aches and extra tired).