What’s next?

[Martin aka paused||M.E.]

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

Yes and I appreciate any input! Thank you!
What might be interesting in this topic is that @Hip posted a thread

https://forums.phoenixrising.me/thr...some-of-the-health-benefits-of-exercise.83991

about decreased life-span of those who regularly take anti-oxidants.
I think if you manipulate your body in any way (supps or drugs) it is always possible it has serious side effects. The question is: what do I lose, but get instead of it?

 

[Viala]

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.

I agree, testing with a quiz seems like an oversimplification. It may point to some possibilities at best. I feel you, I am mostly housebound so not as severe as you are, I also tried loads of supplements, diets and approaches. I've found some that make my CFS symptoms milder including environmental influences, I was able to get off painkillers, made some progress but I am far from being healthy and functioning, there's still a lot of fatigue and pain. I am testing now minerals in high doses and some other treatments, to strenghten thyroid among others, but it may take time to get results.

One of interesting leads I found is white light therapy, it definitely affects our bodies, if it can make depression go away, it may also help us with CFS. There is some research suggesting that we are getting too much blue light nowadays from led lights, which may cause higher rt3 production and thus impact the thyroid and our energy levels. I know that some folks here are very sensitive to light so it would be hard to work with light therapy for them. What I want to say is that maybe artificial light like leds can contribute to worsening of our symptoms, I don't use them anymore, just in case. What's interesting here is that light therapy can take from 3 to 8 weeks for it to work, which is similar time for ADs to fully kick in, maybe there's some correlation here.

 

[Martin aka paused||M.E.]

I agree, testing with a quiz seems like an oversimplification. It may point to some possibilities at best. I feel you, I am mostly housebound so not as severe as you are, I also tried loads of supplements, diets and approaches. I've found some that make my CFS symptoms milder including environmental influences, I was able to get off painkillers, made some progress but I am far from being healthy and functioning, there's still a lot of fatigue and pain. I am testing now minerals in high doses and some other treatments, to strenghten thyroid among others, but it may take time to get results.

One of interesting leads I found is white light therapy, it definitely affects our bodies, if it can make depression go away, it may also help us with CFS. There is some research suggesting that we are getting too much blue light nowadays from led lights, which may cause higher rt3 production and thus impact the thyroid and our energy levels. I know that some folks here are very sensitive to light so it would be hard to work with light therapy for them. What I want to say is that maybe artificial light like leds can contribute to worsening of our symptoms, I don't use them anymore, just in case. What's interesting here is that light therapy can take from 3 to 8 weeks for it to work, which is similar time for ADs to fully kick in, maybe there's some correlation here.

Yes, I tried it when I was moderate

 

[Learner1]

@Martin aka paused||M.E. Given what you have shared, you seem to have significant immune deficiency and dysfunction. It is likely in this state that you may have ongoing undiagnosed infections as well as autoimmunity. I definitely understand that finding help for this is challenging, but continuing to pursue this angle might bring you the most relief.

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.

I have met Ben Lynch, talked with him at length, and attended his 3 day conference. He has a BS in Molecular and Cellular Biology from University of Washington and an ND degree from Bastyr University, the top naturopathic school, with a rigorous science based curriculum. In his work, he delves into medical research to find answers and pull together scientific information.

He is trying to help people. Epigenetics has its place and genes that are not working properly due to environmental factors can be problematic. Improving environmental factors can lead to general improvements in health for many people.

However, if this is not your problem, it won't help you, just like putting a cast on your leg won't cure cancer. Reading a book aimed at laypeople to solve an incredibly complex medical case is not likely to lead to success.


I feel your frustration and your pain, and am sincerely hoping that you can get the help for your immune system that you deserve and that your doctor will become better at advocating for your needs with your insurance.

 

[Martin aka paused||M.E.]

@Martin aka paused||M.E. Given what you have shared, you seem to have significant immune deficiency and dysfunction. It is likely in this state that you may have ongoing undiagnosed infections as well as autoimmunity. I definitely understand that finding help for this is challenging, but continuing to pursue this angle might bring you the most relief.


I have met Ben Lynch, talked with him at length, and attended his 3 day conference. He has a BS in Molecular and Cellular Biology from University of Washington and an ND degree from Bastyr University, the top naturopathic school, with a rigorous science based curriculum. In his work, he delves into medical research to find answers and pull together scientific information.

He is trying to help people. Epigenetics has its place and genes that are not working properly due to environmental factors can be problematic. Improving environmental factors can lead to general improvements in health for many people.

However, if this is not your problem, it won't help you, just like putting a cast on your leg won't cure cancer. Reading a book aimed at laypeople to solve an incredibly complex medical case is not likely to lead to success.


I feel your frustration and your pain, and am sincerely hoping that you can get the help for your immune system that you deserve and that your doctor will become better at advocating for your needs with your insurance.

Thanks a lot for your response.

Yes, my immune system is probably the most critical part, or let's say the low B-cells and the low thymus activity. As it comes to cytokines and chemokines, there is not that much to fix.

The ongoing infections def there but are tricky. I'm still testing but I think I won't find a proof that convince my doc since IgM and high IgG don't convince him. I have the strong feeling that I suffer from a CoxB4 infection (1:640) that has already infiltrated my brain causing inflammation and AAB. But I only have the results of the neutralizationtest and the RNA proof his hard to realise when you can't have a stomach biopsy.

Yes, yes and yes! I suspect I have AAB. Perhaps to dopamine receptors. Would explain some things. But I suspect many more under the surface. I would almost kill to be a patient of Dr. Kaufman because from what I read he's so dedicated and a genius in finding underlying causes but unfortunately it's not possible.

But there's a little chance I could get an adequate IVIG therapy 2g/kg because of the myopathy I have on top of ME. We still try to find an expert that is willing to help me and convince my insurance (since this will cost almost 100k). I will need much more than this (thymus peptides for example).

Ok, I didn't know he has a background in science, than I'm sorry I didn't do more research. My fault. But I rather test for mutations (waiting for my Nebula results) than doing a quiz. That's still pseudoscience in my eyes.

Thank you for your help!!! I appreciate that so much!

 

[splusholia]

Yes both don't help me unfortunately

That’s a shame.
Can I ask, when you try things how long do you test for?
Only asking because nothing has personally helped me until I’ve tried it for over four months. The things that have helped me seem to have been slow to work. Mutaflor helped after this time too. I only found this out after three years of giving up on things too early, so thought I’d share.

 

[Martin aka paused||M.E.]

That’s a shame.
Can I ask, when you try things how long do you test for?
Only asking because nothing has personally helped me until I’ve tried it for over four months. The things that have helped me seem to have been slow to work. Mutaflor helped after this time too. I only found this out after three years of giving up on things too early, so thought I’d share.

Thanks for your input.
Depends on how fast a drug or supplement should have an impact.
Detox 1/2 year... Meditation and co 3 years min... If not more... Whey two months now...
I only say that bec Mestinon for example is supposed to work very fast... So I only tried it for a week... Really depends

 

[Learner1]

Yes, my immune system is probably the most critical part, or let's say the low B-cells and the low thymus activity. As it comes to cytokines and chemokines, there is not that much to fix.

Cytokines and chemokines are messengers and change depending on circumstances, very difficult to understand what is causing what


But your immune issues are pretty clear on paper. The fact that you are so ill leads to a conclusion that this is more than a passing anomaly, and more that your immune system isn't fighting whatever is dragging you down on one hand, while possibly acting inappropriately on the other. So, supporting immune system while looking for infections and autoimmunity seems to have the most promise. How can we help you find information to convince your doctor to be more active in helping you?

The ongoing infections def there but are tricky. I'm still testing but I think I won't find a proof that convince my doc since IgM and high IgG don't convince him. I have the strong feeling that I suffer from a CoxB4 infection (1:640) that has already infiltrated my brain causing inflammation and AAB. But I only have the results of the neutralizationtest and the RNA proof his hard to realise when you can't have a stomach biopsy

IgM is typically an active infection. Prusty's work shows that infections font have to be fully active to be causing mitochondrial damage.

This is definitely something to pursue.

There is a special machine at UC San Francisco that can identify esoteric infections in cerebral. spinal fluid - maybe this could be used to help?

https://nextgendiagnostics.ucsf.edu/providers/

Yes, yes and yes! I suspect I have AAB. Perhaps to dopamine receptors. Would explain some things. But I suspect many more under the surface. I would almost kill to be a patient of Dr. Kaufman because from what I read he's so dedicated and a genius in finding underlying causes but unfortunately it's not possible

Any motivated doctor should be able to find problems. Yes, there are challenges, but it can be done. I've included a list of antibodies from patients around here. Maybe reviewing each and comparing your symptoms might lead to a test that gets you treatment. My blood has been sent to 2 European countries, and I'm pretty sure it can be sent from Europe to the US....

But there's a little chance I could get an adequate IVIG therapy 2g/kg because of the myopathy I have on top of ME. We still try to find an expert that is willing to help me and convince my insurance (since this will cost almost 100k). I will need much more than this (thymus peptides for example).

what is the problem with myopathy and IVIG?

Thank you for your help!!! I appreciate that so much!

You are very welcome!

 

[Martin aka paused||M.E.]

Cytokines and chemokines are messengers and change depending on circumstances, very difficult to understand what is causing what


But your immune issues are pretty clear on paper. The fact that you are so ill leads to a conclusion that this is more than a passing anomaly, and more that your immune system isn't fighting whatever is dragging you down on one hand, while possibly acting inappropriately on the other. So, supporting immune system while looking for infections and autoimmunity seems to have the most promise. How can we help you find information to convince your doctor to be more active in helping you?
IgM is typically an active infection. Prusty's work shows that infections font have to be fully active to be causing mitochondrial damage.

This is definitely something to pursue.

There is a special machine at UC San Francisco that can identify esoteric infections in cerebral. spinal fluid - maybe this could be used to help?

https://nextgendiagnostics.ucsf.edu/providers/
Any motivated doctor should be able to find problems. Yes, there are challenges, but it can be done. I've included a list of antibodies from patients around here. Maybe reviewing each and comparing your symptoms might lead to a test that gets you treatment. My blood has been sent to 2 European countries, and I'm pretty sure it can be sent from Europe to the US....
what is the problem with myopathy and IVIG?
You are very welcome!

It's complex:

The biggest problem is that I'm left with docs who really have no clue at all. They don't even understand what I tell them about latent, non-cytolytic and abortive infections or fragmentation of mitochondria. The “ME-specialist” originally said “I don't see a reason why reducing antibodies with antivirals should be helpful”. Yes, thank you, next one please.

The good news is that my GP is willing to prescribe almost everything what I want. The bad news is I have to pay it out of my own pocket.

I have around 7k left, get 500 from the government per month and that's all. As I'm 100% bedridden it's not only the drugs which cost an amount of money: its the products for nursing care, nutrition and tube feeding too.

So, the only chance is to look for an expert who maybe has no clue of ME but immunology and can convince my insurance to cover the costs. That's really not easy if you're don't have a contract with a private insurance (I don't - I only have the basic obligatory health insurance that you have if you are citizen of Germany - and these insurances usually only cover costs for drugs that are indicated, means that the indication for their approval must fit your exact virus for example - otherwise it's off-label and you pay 100%).

There are some legal exceptions though: if for your disease - which Must be life challenging- there is no drug but you have one that helps you your insurance has to cover it. That's a matter of fact f proof. It's the case with my myopathy as case studies have shown that three things are effective: IVIG, stem-cell therapy and chemotherapy

https://en.m.wikipedia.org/wiki/Sporadic_late-onset_nemaline_myopathy

But it always needs an expert and a assessment and in the worst case legal proceedings.

As it comes to these AAB: If I don't want to pay everything out of my pocket (which I can't) I would have to convince a specialist like a rheumatologist that these AAB could be triggering my disease. But I can't go to their practices and they decline to do telehealth. Stupid.

And last not least: hospitals all refuse me. My only chance to enter a hospital is a case of an emergency (with blue light and siren - if my life functions are in danger)

Welcome to Germany One of the richest countries in the world (due to its arms trade, corruption, lobby politics for the big companies and scourging of the poor EU-countries - in addition to an admittedly well-functioning economy).

But if you get sick and are not exactly a standard case - good night!

 

[Irat]

@Martin aka paused||M.E. Martin good night right,lol, yeah it sucks here. I also only have a MD,which has no clue,but has done tests for me I asked for but I had to pay out of pocket.When I was still milder and could go to doctors I had been everywhere and either they had no clue,or they told me I should see a therapist it's all in my mind.pointless...i do have a diagnose from a private environmental doctor for MCS,but not for ME

 

[MartinK]

@Martin aka paused||M.E. know you from this forum for some time and looks like our cases are very, very simmilar ...also problems with head pain from neck muscles )

The only thing I'm not sure you have the same - a feeling of inflammation in muscles/back/legs

Joshua trying to help me too now, looks like my PEMs are shorter now, I also did SOT for EBV in last months and now starting Spironolactone!

Good luck!

What helped me in past:
HBOT
L-Carnitine
Cromolyn
D-Ribose

Lyme treatments failed, I left those thoughts.

 

[Martin aka paused||M.E.]

Little update on Wellbutrin: it definitely does sth. I can't sit or stand up but had an 8hrs (!) conversation with my brother (whispering).

Today I don't feel well but so far no big crash.

If you take into account that I'm very severe and normally can't speak, that's quite much.

Dopamine. It's dopamine.

This study might interest you:

 

[Irat]

Little update on Wellbutrin: it definitely does sth. I can't sit or stand up but had an 8hrs (!) conversation with my brother (whispering).

Today I don't feel well but so far no big crash.

If you take into account that I'm very severe and normally can't speak, that's quite much.

Dopamine. It's dopamine.

This study might interest you:

There is another one by Miller about the dopamin metabolism in ME.
https://www.healthrising.org/blog/2...-ganglia-chronic-fatigue-syndrome-treatments/

 

[J.G]

It's worth noting that low dopamine in affected cells is in keeping with the metabolic trap theory.

High concentrations of tryptophan inhibit the activity of tyrosine hydroxylase (TH), the enzyme responsible for the synthesis of L-DOPA, in turn the direct precursor to dopamine.

 

[Martin aka paused||M.E.]

It's worth noting that low dopamine in affected cells is in keeping with the metabolic trap theory.

High concentrations of tryptophan inhibit the activity of tyrosine hydroxylase (TH), the enzyme responsible for the synthesis of L-DOPA, in turn the direct precursor to dopamine.

That could be an explanation why direct agonism (Aripriprazole) is more affective than supplementing tyrosine which has to be converted (twice).

Interesting that he too mentions diet as a critical factor of inflammatory responses and consequently result in low dopamine levels (which gives even more oil to the fire).

 

[GlassCannonLife]

@Martin aka paused||M.E. , when you tried various thiamine supplements, did you try injectable thiamine hydrochloride or oral allithiamine? There was a discussion on here years ago that linked an interesting study from 1976 (R) where they compared oral thiamine hcl with injected and two oral allithiamine types - only the injected and the allithiamine types actually increased serum, RBC, and CSF levels of thiamine.

I saw that benfotiamine does not raise levels in the brain (R), and I assume that increased CSF levels would only occur with increased levels in the brain (please correct me if I'm wrong). This makes me think you may be able to find some benefit from allithiamine or injected thiamine hcl. I am currently trialling 50 mg injections each morning as this is cheaper for me than the allithiamine. No real noticeable effect as of yet but perhaps a slight boost in clarity (or placebo? Lol). I have 100 mL of a 125 mg/mL solution though so it will last me for some time.

RE: dopamine, I just wanted to suggest a couple of things that may be relevant. Firstly, I'd be careful with wellbutrin as withdrawal/rebound low dopamine may be an issue. I have restless leg syndrome and I have heard of people developing bad cases of this when they mess with dopamine (among other side effects). You must of course be the judge of what you think is worth trialling, but just a word of caution.

Also, something to consider both for dopamine but also just in general, would be the regenerative peptide BPC-157. There have been numerous studies showing it has beneficial effects across many body systems, including balancing out dysfunctional dopamine levels (both low or high). It's effects have not been comprehensively characterised but if you are interested in experimental therapies it would be worth a shot. I started taking it 2 days ago and have felt a little more robust since I started (did a few more things and have managed to dodge PEM so far - fingers crossed). I am taking 250 mcg morning and night in a SC/IM injection, and I bought mine from former Chengdu Youngshe on Alibaba - they have since renamed and I can't remember the name but I think guys on discord know. I didn't check the purity but I figured enough people have bought from there that it seemed worth the risk, the impure fraction would be likely harmless, and most peptide suppliers use Chinese manufacturers such as this anyway. It is a good price for the quantity, you just need to have someone to mix the solutions for you and give you shots if you want to try it.

Another potential candidate would be the peptide Semax, or N-Acetyl Semax, or even N-Acetyl Semax Amidate. If you are having low BDNF (and want to raise it, that is!) then this would be a potentially effective treatment, as one of its main effects is to raise BDNF, along with boosting serotonergic and dopaminergic systems (eg R). It does this because it is a derivative of ACTH, which apparently has these functions natively. Some people have concerns about its ACTH-derivation making it have direct interactions with adrenal function, however, I have looked into this and I have found multiple studies where they did not find any cortisol-stimulating effects. I am currently trialling 200 mcg of Na-Semax Amidate every few days in a nasal spray (1 mg/mL saline solution, 1 spray is 100 mcg). I am wary as I do not want to develop a tolerance/dependence on it. I do feel a relatively clear improvement in brain fog soon after I try a dose.

The peptides are far more affordable from Chinese suppliers but I should mention that they still would end up costing you a few hundred euros after shipping is included.

Wow another long post..! I promise I'm not following you around on the forums writing long posts on all your threads.. I seem to just stumble onto your threads all the time! Oh another thought RE: poor immune system function - have you tried LDN?

Anyway, take care!

 

[Martin aka paused||M.E.]

@Martin aka paused||M.E. , when you tried various thiamine supplements, did you try injectable thiamine hydrochloride or oral allithiamine? There was a discussion on here years ago that linked an interesting study from 1976 (R) where they compared oral thiamine hcl with injected and two oral allithiamine types - only the injected and the allithiamine types actually increased serum, RBC, and CSF levels of thiamine.

I saw that benfotiamine does not raise levels in the brain (R), and I assume that increased CSF levels would only occur with increased levels in the brain (please correct me if I'm wrong). This makes me think you may be able to find some benefit from allithiamine or injected thiamine hcl. I am currently trialling 50 mg injections each morning as this is cheaper for me than the allithiamine. No real noticeable effect as of yet but perhaps a slight boost in clarity (or placebo? Lol). I have 100 mL of a 125 mg/mL solution though so it will last me for some time.

RE: dopamine, I just wanted to suggest a couple of things that may be relevant. Firstly, I'd be careful with wellbutrin as withdrawal/rebound low dopamine may be an issue. I have restless leg syndrome and I have heard of people developing bad cases of this when they mess with dopamine (among other side effects). You must of course be the judge of what you think is worth trialling, but just a word of caution.

Also, something to consider both for dopamine but also just in general, would be the regenerative peptide BPC-157. There have been numerous studies showing it has beneficial effects across many body systems, including balancing out dysfunctional dopamine levels (both low or high). It's effects have not been comprehensively characterised but if you are interested in experimental therapies it would be worth a shot. I started taking it 2 days ago and have felt a little more robust since I started (did a few more things and have managed to dodge PEM so far - fingers crossed). I am taking 250 mcg morning and night in a SC/IM injection, and I bought mine from former Chengdu Youngshe on Alibaba - they have since renamed and I can't remember the name but I think guys on discord know. I didn't check the purity but I figured enough people have bought from there that it seemed worth the risk, the impure fraction would be likely harmless, and most peptide suppliers use Chinese manufacturers such as this anyway. It is a good price for the quantity, you just need to have someone to mix the solutions for you and give you shots if you want to try it.

Another potential candidate would be the peptide Semax, or N-Acetyl Semax, or even N-Acetyl Semax Amidate. If you are having low BDNF (and want to raise it, that is!) then this would be a potentially effective treatment, as one of its main effects is to raise BDNF, along with boosting serotonergic and dopaminergic systems (eg R). It does this because it is a derivative of ACTH, which apparently has these functions natively. Some people have concerns about its ACTH-derivation making it have direct interactions with adrenal function, however, I have looked into this and I have found multiple studies where they did not find any cortisol-stimulating effects. I am currently trialling 200 mcg of Na-Semax Amidate every few days in a nasal spray (1 mg/mL saline solution, 1 spray is 100 mcg). I am wary as I do not want to develop a tolerance/dependence on it. I do feel a relatively clear improvement in brain fog soon after I try a dose.

The peptides are far more affordable from Chinese suppliers but I should mention that they still would end up costing you a few hundred euros after shipping is included.

Wow another long post..! I promise I'm not following you around on the forums writing long posts on all your threads.. I seem to just stumble onto your threads all the time! Oh another thought RE: poor immune system function - have you tried LDN?

Anyway, take care!

Tyrosine injections, interesting! Semax, even more interesting!

LDN is a joke - at least for me, but I take it though.

You also indirectly mess with dopamine when you take precursors so I don't understand the difference? It also produces dopamine quinones etc.

I think about BPC-157 for a while now .But one step after another.

I won't stay for long on Wellbutrin. I'm not interested in brain fog or fatigue or anything but energy. I have to get into my wheelchair. If you are bedbound for so long the possible benefits you see overweigh the possible side effects in my eyes.

of course, if it goes wrong you're fucked. But that can happen with many drugs. It's the same with Abilify.

Would prefer to take D-Ribose and everything is fine but that's not the case.

Thank you!

Edit: you talked about thiamine. I got it wrong sorry!

 

[nerd]

There was a discussion on here years ago that linked an interesting study from 1976 (R) where they compared oral thiamine hcl with injected and two oral allithiamine types - only the injected and the allithiamine types actually increased serum, RBC, and CSF levels of thiamine.

I have elevated Thiamine levels now after taking high-dose Thiamine for quite a while, but without a notable difference.

 

[Martin aka paused||M.E.]

I have elevated Thiamine levels now after taking high-dose Thiamine for quite a while, but without a notable difference.

Same here

 

[Learner1]

when you tried various thiamine supplements, did you try injectable thiamine hydrochloride or oral allithiamine? There was a discussion on here years ago that linked an interesting study from 1976 (R) where they compared oral thiamine hcl with injected and two oral allithiamine types - only the injected and the allithiamine types actually increased serum, RBC, and CSF levels of thiamine.

I saw that benfotiamine does not raise levels in the brain (R), and I assume that increased CSF levels would only occur with increased levels in the brain (please correct me if I'm wrong)

Allithiamine very quickly gave me neuropathy. Pain zaps down the front of my legs.

I've taken high dose benfotiamine for 4 years, and it works well without side effects. I think the statement that it doesn't get into the brain is wrong.