What’s next?

[cporro]

i'll give my 2 cents on wellbutrin as i was on it for about a year. wellbutrin helped me more than anything i can think of. here is some history. at the end i'll tell you why i got off it.

first, i'm not 100% convinced i have CFS. certainly have some symptoms.

like the op i also suspected dopamine to be involved.

i keep most of the results from about 10 years of lab tests in a spreadsheet. red cells for things out of reference range. i've had low testosterone for at least 10 years. around 300. my adrenal blood tests are normal. my saliva adrenal test showed what i experience. no energy in the morning. afternoon crash. low overall. TSH has been around 3 and also around 1. so high at times. I have thyroid anibodies that are high (Thyroid Peroxidase). low vitB12. low D. High overall cholesterol.

my energy/depression/focus/ambition seem to be on a random roller coaster with no predictive factors.

wellbutrin took about 8 weeks to kick in for me. and 8 weeks to stop working as well. very slow. missing a week of it didn't change anything.

on it i had way more energy. and very stable energy unlike now where i have no idea what next week will be like. on wellbutrin i only needed 6 hours of sleep. i could also focus better and longer. and i did not have twitchy methy frantic energy. i went back to school in my 40's which i could never have done without it.

i did not gain weight or loose interest in sex or have insomnia. my doctor seemed to pull this drug out of a hat saying he thought i was depressed and wellbutrin had low side effects.

but after a year on 300mg XL it started to loose effectiveness. my doctor's first idea was to up the dose. he also told me there was evidence that people with depression could get off it after a year and have a new normal baseline. so i got off it.

terrible depression followed 8 weeks later. apathy. almost to the point of staring blankly. i was desperate and got back on it. 2nd attempt to quit. same thing. 3rd attempt....very difficult but made it.

i realized that if i ever got back on wellbutrin i could probalby never get off it. The dose would increase and whatever side effects showed up I'd have to accept.

the first question i asked my doctor before going on wellbutrin was "is it addictive?" he said no. no trouble getting off it he said. he was very wrong. and since getting off it i've had the worst fatigue of my life, way more suicidal thoughts. been off it maybe 4 years now.

i do think about getting back on it.

last thing. wellbutrin, like many drugs, works in many ways. it's supposed to be an SSRI according to WIKI but also a norepinephrine–dopamine reuptake inhibitor and profoundly lowers levels of TNF(tumor necrosis factor-alpha), interferon-gamma, and interleukin-1 beta

https://pubmed.ncbi.nlm.nih.gov/16644475/

so my question has always been....what does this success tell me? is it dopamine? if it inflammation? there must be something else that can achieve these effects? testosterone injections? something without the addiction and poop out.

 

[Viala]

@cporro I've read your messages on wellbutrin recently and was wondering how you're doing, thank you for an update. Have you thought about trying tyrosine or l-dopa, more natural support of dopamine?

 

[cporro]

@Vlala, checking my health log....

looks like i took a product called thyroid helper in 2017 with 200mg of tyrosine in it. https://www.wellnessresources.com/supplements/thyroid-helper
if it worked i'd prob still be on it.

and i have some notes on the book mood cure, julia ross
L-tyrosine (500mg every 30 minutes up to 1500mg)
would be a guess but i don't think i ever tried this. certainly did not log it!

so yeah, maybe an easy thing to explore. much easier then injecting T or B12! thx.

 

[Irat]

@Vlala, checking my health log....

looks like i took a product called thyroid helper in 2017 with 200mg of tyrosine in it. https://www.wellnessresources.com/supplements/thyroid-helper
if it worked i'd prob still be on it.

and i have some notes on the book mood cure, julia ross
L-tyrosine (500mg every 30 minutes up to 1500mg)
would be a guess but i don't think i ever tried this. certainly did not log it!

so yeah, maybe an easy thing to explore. much easier then injecting T or B12! thx.

Cporro ,you might want to watch on you tube what David lynch has to say about messing around with dopamin in your brain and what the real causes can be for a dopamin problem.
And why your medication stopped working.

Title is DNA testing to target nutrition and lifestyle changes,Dr David lynch, minute 56:38

 

[Martin aka paused||M.E.]

i'll give my 2 cents on wellbutrin as i was on it for about a year. wellbutrin helped me more than anything i can think of. here is some history. at the end i'll tell you why i got off it.

first, i'm not 100% convinced i have CFS. certainly have some symptoms.

like the op i also suspected dopamine to be involved.

i keep most of the results from about 10 years of lab tests in a spreadsheet. red cells for things out of reference range. i've had low testosterone for at least 10 years. around 300. my adrenal blood tests are normal. my saliva adrenal test showed what i experience. no energy in the morning. afternoon crash. low overall. TSH has been around 3 and also around 1. so high at times. I have thyroid anibodies that are high (Thyroid Peroxidase). low vitB12. low D. High overall cholesterol.

my energy/depression/focus/ambition seem to be on a random roller coaster with no predictive factors.

wellbutrin took about 8 weeks to kick in for me. and 8 weeks to stop working as well. very slow. missing a week of it didn't change anything.

on it i had way more energy. and very stable energy unlike now where i have no idea what next week will be like. on wellbutrin i only needed 6 hours of sleep. i could also focus better and longer. and i did not have twitchy methy frantic energy. i went back to school in my 40's which i could never have done without it.

i did not gain weight or loose interest in sex or have insomnia. my doctor seemed to pull this drug out of a hat saying he thought i was depressed and wellbutrin had low side effects.

but after a year on 300mg XL it started to loose effectiveness. my doctor's first idea was to up the dose. he also told me there was evidence that people with depression could get off it after a year and have a new normal baseline. so i got off it.

terrible depression followed 8 weeks later. apathy. almost to the point of staring blankly. i was desperate and got back on it. 2nd attempt to quit. same thing. 3rd attempt....very difficult but made it.

i realized that if i ever got back on wellbutrin i could probalby never get off it. The dose would increase and whatever side effects showed up I'd have to accept.

the first question i asked my doctor before going on wellbutrin was "is it addictive?" he said no. no trouble getting off it he said. he was very wrong. and since getting off it i've had the worst fatigue of my life, way more suicidal thoughts. been off it maybe 4 years now.

i do think about getting back on it.

last thing. wellbutrin, like many drugs, works in many ways. it's supposed to be an SSRI according to WIKI but also a norepinephrine–dopamine reuptake inhibitor and profoundly lowers levels of TNF(tumor necrosis factor-alpha), interferon-gamma, and interleukin-1 beta

https://pubmed.ncbi.nlm.nih.gov/16644475/

so my question has always been....what does this success tell me? is it dopamine? if it inflammation? there must be something else that can achieve these effects? testosterone injections? something without the addiction and poop out.

That's concerning. I will stop it anyway in a few days/week to try another drug bc it's not strong enough to get me out of bed. I hope I won't have the same issues you had. If it lowers IFNg that's bad bec it's already very low and I try to combat this with Tulsi atm... Thank you for letting us know about your experience!

 

[Martin aka paused||M.E.]

Cporro ,you might want to watch on you tube what David lynch has to say about messing around with dopamin in your brain and what the real causes can be for a dopamin problem.
And why your medication stopped working.

Title is DNA testing to target nutrition and lifestyle changes,Dr David lynch, minute 56:38

I have problems understanding him. What are the reasons for low dopamine regarding David Lynch?

 

[Irat]

I have problems understanding him. What are the reasons for low dopamine regarding David Lynch?

...i will try to explain you later when my brain works better,I also had to watch several times to get it,........oh by the way his name is Ben lynch not David,author of dirty genes.

 

[Irat]

I have problems understanding him. What are the reasons for low dopamine regarding David Lynch?

So ok i try to summarize it as good as i can.Keep in mind I m not a native English speaker..........................dopamin is a very powerful neurotransmitter which spikes for example with sex,winning a competition,a hug or falling in love and gives us this good feeling. BUT at the same time it's also connected to neurologal diseases like Parkinson and others. And medications like Ritalin,L dopa,high long term doses of tyrosine are very toxic to the brain .By keeping so much dopamin around it does make toxic by products as dopamin quinolones and aldehyd which have to be metabolized.

Dopamin is basically a pro oxidant.and this can cause long term brain damage.so you have to be sure that your gluthiatone levels are up ,your carnitine,your antioxidants and your genes have to be open.this process again makes further toxic by
products.

Then he gives the example that medicine think that Parkinson is a low dopamin state and they give l dopa ,which does not last.
Why doesnt it last ? Because l dopa is the problem why the brain was toxic in the first place. Why? Because the methylation was mess.Why was it a MESS? Because of environmental triggers which make your genes even more dirty slower or faster.


So bottom line is .not the low dopamin is the cause and by trying fixing this you just end up with more brain damage.,because too much dopamin is a pro oxidant damaged brain.


So what are environmental triggers that mess your methylation and bind to your receptors ? Pathogenes,heavy metals,stress,high oestrogen,pesticides etc etc .

 

[Martin aka paused||M.E.]

So ok i try to summarize it as good as i can.Keep in mind I m not a native English speaker..........................dopamin is a very powerful neurotransmitter which spikes for example with sex,winning a competition,a hug or falling in love and gives us this good feeling. BUT at the same time it's also connected to neurologal diseases like Parkinson and others. And medications like Ritalin,L dopa,high long term doses of tyrosine are very toxic to the brain .By keeping so much dopamin around it does make toxic by products as dopamin quinolones and aldehyd which have to be metabolized.

Dopamin is basically a pro oxidant.and this can cause long term brain damage.so you have to be sure that your christina levels are up ,your carnisine,your antioxidants and your genes have to be open.this process again makes further toxic by
products.

Then he gives the example that medicine think that Parkinson is a low dopamin state and they give l dopa ,which does not last.
Why doesnt it last ? Because l dopa is the problem why the brain was toxic in the first place. Why? Because the methylation was mess.Why was it a MESS? Because of environmental triggers which make your genes even more dirty slower or faster.


So bottom line is .not the low dopamin is the cause and by trying fixing this you just end up with more brain damage.,because too much dopamin is a pro oxidant damaged brain.


So what are environmental triggers that mess your methylation and bind to your receptors ? Pathogenes,heavy metals,stress,high oestrogen,pesticides etc etc .

Thank you! To back this up with a study in case of Parkinson https://pubmed.ncbi.nlm.nih.gov/12835121/

What I really don't understand is what he means with “genes have to be open”. What are “dirty, slower, faster genes”?

I've never heard if Christina-levels? Typo?

And I don't understand why anti-oxidants can cause further toxic byproducts...

This might also be interesting for those who take tyrosine like @ljimbo423

 

[Irat]

Thank you! To back this up with a study in case of Parkinson https://pubmed.ncbi.nlm.nih.gov/12835121/

What I really don't understand is what he means with “genes have to be open”. What are “dirty, slower, faster genes”?

I've never heard if Christina-levels? Typo?

And I don't understand why anti-oxidants can cause further toxic byproducts...

This might also be interesting for those who take tyrosine like @ljimbo423

Typo ,I ment Gluthiatone, not the antioxidants itself cause the toxic products,but the clearing process of dopamine I guess.(did not understand it really myself) ........his book dirty genes you also can get in German.,,,,open detox pathways I mean,like your lymphatic system,kidneys etc ,.......he talks about the low and fast comt gen which is responsible for the clearance of dopamin and adrenaline,if this is slow you never should take tyrosine anyway as you have already too much dopamin around and problems clearing it......give in Google Ben lynch comt gen,he talks about ........

A dirty gen is this : we all are born with mutations,you can really live healthy with them and they don t mean anything,but over the time when we live the wrong lifestyle,collect toxins,stress,nutrient defficiancy etc etc they become dirty which means the become less defficient and in doing their job,like for example methylation

 

[Irat]

Anyway I had been severely injured by an SSRI and did later kindle with an Antibiotic and I would rather die before ever messing around again with my neurotransmitters.

 

[Irat]

https://www.psychologytoday.com/us/...-comt-gene-and-how-does-it-affect-your-health

 

[Boba]

Hmm. Really interesting. My problems started with Ritalin, Vyvanse and Smoking. I have an ADHD diagnosis and the fast COMT gene. I think my receptors burned out after pushing too much as I was always low on dopamine and needed the push to feel normal. I will watch the video, thanks for the recommendation!

 

[Viala]

and i have some notes on the book mood cure, julia ross
L-tyrosine (500mg every 30 minutes up to 1500mg)
would be a guess but i don't think i ever tried this. certainly did not log it!

so yeah, maybe an easy thing to explore. much easier then injecting T or B12! thx.

I have this book as well, very good information in there. From what I understood the effect may depend on a dose, although I think 500mg every half an hour might be way too much? Especially that it sometimes takes one to couple of days for them to start working. I always start with like half of a pill daily and then wait a few days to see the effect. I took different aminos and have very good experiences with them, no side effects when I stopped them, some of them made me too wired and nervous like tyrosine so these were obviosuly not for me, but besides that it was fine. I've read though that some people developed tolerance over couple of months, but I didn't notice it with the one I took, it may be the case with tyrosine.

 

[Martin aka paused||M.E.]

Typo ,I ment Gluthiatone, not the antioxidants itself cause the toxic products,but the clearing process of dopamine I guess.(did not understand it really myself) ........his book dirty genes you also can get in German.,,,,open detox pathways I mean,like your lymphatic system,kidneys etc ,.......he talks about the low and fast comt gen which is responsible for the clearance of dopamin and adrenaline,if this is slow you never should take tyrosine anyway as you have already too much dopamin around and problems clearing it......give in Google Ben lynch comt gen,he talks about ........

A dirty gen is this : we all are born with mutations,you can really live healthy with them and they don t mean anything,but over the time when we live the wrong lifestyle,collect toxins,stress,nutrient defficiancy etc etc they become dirty which means the become less defficient and in doing their job,like for example methylation

Hm ok I looked into his stuff a bit. While there is some truth to it (high dopamine levels and toxicity), he doesn't convince me at all and to me it looks more like pseudoscience. Takeaways:
- He is not a doctor and doesn't have any Ph.D. so putting this academic title in front of his name is misleading itself. He's a naturopath; he recovered from a chronic illness (vomiting and diarrhea) in India. That's his background.
- in his book “dirty genes” he has a quiz you can fill in to find out your mutations (I think that he means mutations with “dirty”) of the genes MTHFR, DAO, COMT, GST/GPX, MAOA, NOS3 and PEMT. Well, ok. These are questions like “I sweat easily when exercising”. So, if one wants to believe in this approach I'm fine with it. I don't.
- He claims the a whole bunch of diseases are caused to these mutations, or “dirty genes”. I'm not an expert in genetics but there are over 20.000 (human) genes in our body so that seems to be “a bit“ oversimplified. Or wrong. Idk. And then we still don't understand the interactions between our genes and those of for example bacteria.
- His approach seems to be based on epigenetics. But his claims don't surprise me. That a naturopath bases his approach on epigenetics is interesting. But then it comes to what we know from naturopaths: detox, fast, eat “healthy” (whatever that is, afaik science doesn't know yet, but he seems to). And if you don't improve you have to supplement. He recommends the supplements of his own company (surprisingly).

A few things are important I think. To keep in mind that high levels of dopamine produce dopamine quinones. And that one has to be careful messing around with neurotransmitters. These things are true, of course.

In the end it's the same old story: weigh up the possible benefits against side effects based on your amount of suffering.

Very severe ME. Quite frustrating.

 

[Viala]

A few things are important I think. To keep in mind that high levels of dopamine produce dopamine quinones. And that one has to be careful messing around with neurotransmitters. These things are true, of course.

What I think is important here, that ADs and aminos or other types of supplements or medicine are not the same. Similar substances are not the same. One may be detrimental long term, the other may be great for the body. I think this is overlooked often in summary of different research papers, so when one is referring for example to high levels dopamine it is good to ask what caused this high levels, because the body may react totally differently to other substances, and this effect may be true only to that particular substance.

 

[Martin aka paused||M.E.]

What I think is important here, that ADs and aminos or other types of supplements or medicine are not the same. Similar substances are not the same. One may be detrimental long term, the other may be great for the body. I think this is overlooked often in summary of different research papers, so when one is referring for example to high levels dopamine it is good to ask what caused this high levels, because the body may react totally differently to other substances, and this effect may be true only to that particular substance.

That's true. I don't doubt that. I only doubt his approach. That there is a problem if you have a certain amount mutations of let's say the COMT gene in your body is also understandable. But do you think you can test for it with a quiz?
My problem is that I'm not new to this. I'm sick since 2013. When I was ill but not that severely affected as I am now for 3 1/2 years I tried everything. All those approaches. I detoxed, I fasted, keto, paleo, vegan, supplements, life-style changes, meditations, self-hypnosis.... I can't count what I have all tried. But nothing improved my health. Only Abilify did. And now Wellbutrin at least a tiny bit.
What should I do? What? I'm desperate and need an improvement. Being 100% bedridden means having no life at all. That's why I in the past often said I can't understand why ME patients take heavy drugs like Ritux, antivirals etc. But now I understand that.

But if it helps other ppl it's great that these recommendations are there. But for me it doesn't even knock on the door.

 

[andyguitar]

All those approaches. I detoxed, I fasted, keto, paleo, vegan, supplements, life-style changes, meditations, self-hypnosis.... I can't count what I have all tried. But nothing improved my health. Only Abilify did. And now Wellbutrin at least a tiny bit.

In an attempt to shine a positive light here.... you know what does'nt work. And you know what does/did. So it narrows things down a bit. And you have only been taking the Wellbutrin for a short time. Might fix things.

 

[Irat]

Hm ok I looked into his stuff a bit. While there is some truth to it (high dopamine levels and toxicity), he doesn't convince me at all and to me it looks more like pseudoscience. Takeaways:
- He is not a doctor and doesn't have any Ph.D. so putting this academic title in front of his name is misleading itself. He's a naturopath; he recovered from a chronic illness (vomiting and diarrhea) in India. That's his background.
- in his book “dirty genes” he has a quiz you can fill in to find out your mutations (I think that he means mutations with “dirty”) of the genes MTHFR, DAO, COMT, GST/GPX, MAOA, NOS3 and PEMT. Well, ok. These are questions like “I sweat easily when exercising”. So, if one wants to believe in this approach I'm fine with it. I don't.
- He claims the a whole bunch of diseases are caused to these mutations, or “dirty genes”. I'm not an expert in genetics but there are over 20.000 (human) genes in our body so that seems to be “a bit“ oversimplified. Or wrong. Idk. And then we still don't understand the interactions between our genes and those of for example bacteria.
- His approach seems to be based on epigenetics. But his claims don't surprise me. That a naturopath bases his approach on epigenetics is interesting. But then it comes to what we know from naturopaths: detox, fast, eat “healthy” (whatever that is, afaik science doesn't know yet, but he seems to). And if you don't improve you have to supplement. He recommends the supplements of his own company (surprisingly).

A few things are important I think. To keep in mind that high levels of dopamine produce dopamine quinones. And that one has to be careful messing around with neurotransmitters. These things are true, of course.

In the end it's the same old story: weigh up the possible benefits against side effects based on your amount of suffering.

Very severe ME. Quite frustrating.

Understand your frustration.I m in the same boat.tried so much and all it did was making me worse.I don t trust anyone out there anymore,and only replied to this post in order to say be careful it might can hurt you in the end.But who knows .He might be wrong too.

 

[Martin aka paused||M.E.]

In an attempt to shine a positive light here.... you know what does'nt work. And you know what does/did. So it narrows things down a bit. And you have only been taking the Wellbutrin for a short time. Might fix things.

Thank you @andyguitar ... Needed positive words today!