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dreamydays

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I still think the metabolic trap theory has some merit. Robert Phair looked into genetic problems and his current theory is that tryptophan metabolism gets overloaded and we don't have the ability to process it and so we get stuck in a trap.

The enzyme which can process it is IDO1, as we lack IDO2; In order to process the tryptophan at the moment is to boost IDO1.

I tried a diet without tryptophan but taking 5-HTP so as to get enough serotonin. I did this for 2 weeks. Robert Phair suggested it would take 2 years, so I discontinued this, it was pretty horrible food!

As there is no way of getting iDO2 if you genetically don't have it or it doesn't function. So. I have experimented with boosting IDO1.

IDO1 Boosters

-Interferon Gamma is the main booster of IDO
-Interferon Beta and Alpha also boost IDO
-Robert Phair suggested HBOT

I may have forgotten some, so please contribute

My experience
As IFN-y is the main target so we started with Holy Basil. (Tulsi)

1598457175542.png
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I found this beneficial and its only herb that I take. It has a quick benefit, I took it daily during this period and try to take this now intermittently when I can. We take 5-10g mixed with water and 3 sweeteners as its pretty bitter. Organic herb is better than low quality extracts, but they can help as well.

I then managed to buy interferon-gamma from Russia, unfortunately even though its medical grade, the dose was not strong enough to push IDO hard enough to clear enough trypyhphan. I checked doses and ending up taking 20 at the same. I managed to get a low grade fever, but not enough to push me out of the trap. It's possibly a potential treatment, but even from Russia it's way too expensive to pursue.
1598457031370.png



In terms of doses Interferon-Beta injections are stronger so I tried them next.
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I found that 1 dose wan't strong enough so we went to 2 a day. Mrs dreamydays and I were both at our worst. Mrs Dreamydays needed the boost more so she did a week of 2 injections one day and then 1 injection the next day. This is about the limit of what we could take as it caused extreme fever and extreme joint pain. She was basically bedbound during the treatment. However, after the week she did feel an improvement.

The next thing (and much more affordable) was Oxymatrine.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5430867/
1598458762092.png
Mrs Dreamydays had to start very slowly with half a tablet and worked up to 3 a morning and 3 at night, This is what got her our of her bad phase and back to housebound and able to potter about and cook dinner. Every time she went up a dose she got a a headache for a few days and then felt a little stronger. She still takes this everyday.

I was able to go up to full dose within a few days. I feel it's beneficial, but I only take it intermittently now.

I also tried the peptide Thymosin Alpha1, which had a small positive effect
https://www.tandfonline.com/doi/full/10.1080/14712598.2018.1484447

So in summary, I couldn't get out of the metabolic trap if it exists using interferon and other inducers. The most helpful things were the herbal supplements, although Mrs Dreamydays benefited from a week of high dose interferon beta, but the side effects were very strong.

In the end I got out of my slump by getting a bacterial infection and having IV antibiotics in hospital. I had a delirium and then dreamt that I went to some of kind of clinic and they cured my ME. Once I woke up I felt fantastic. By the time I got out of the hospital I was a little drained as they kept me in for 3 days as I was waiting for a CT scan which I didn't need. I needed a lawyer as I demanded to be discharged but they basically refused. They don't understand ME, and I felt so good I needed to get home and protect it. I still came out feeling better. When bacteria is killed it releases IFN-y in quite large amounts.

Its quite possible that my dream and delirium helped more than the infection/IFN-y due to LPS. However, I have had improvements from bacterial infections/antibiotics on a few occasions. Also the change in environment of being in a hospital could have a stimulating effect on my body.

Overall I can't say that the Metabolic trap theory is correct or completely off the mark. But I can say that good quality Holy Basil and a trial of Oxymatrine yielded good results and the peptide helped a little as well.

I know that many people have moved on from this theory, but there could be lessons to learn from my experiments/trials. In any case Interferons are very good at stopping latent infections from popping back up, so there is that possibility as well. Hope this information helps someone, or gets people thinking. In any case there is a good chance that IDO1's rate limitation means that you can never get it working well enough to solve this theoretical problem.
 
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Hello,

Interesting that you responded to Oxymatrine. How long did you take the oxymatrine for before seeing the effect? Also do you know the dose of each capsule? Isn't there a possibility this was also simply having an immune effect or causing some sort of die off reaction, possibly not the latter as it didn't last very long, however maybe the former. This is interesting work, also interesting you tried Holy Basil and it worked, partly because you say its bitter.

I've taken Andrographis Paniculata on and off for 2 years and it's extremely bitter. I am not sure you can get anymore bitter than this plant. Which makes me wonder if it has an IDO effect. All I know is I often improve somewhat when I take it, maybe by 1 energy point on the score chart and then over the course of 2-3 weeks this effect disappears. I have a thread on PR about the plant. Just got me thinking because you mentioned the bitterness. I haven't ever looked into Andro's potential interferon level adjustment, or its constituent andrographolides effects, I will take a look.
 

Wishful

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so I discontinued this, it was pretty horrible food!
Cornstarch pancakes? :lol: Boring, but zero TRP. I can't remember how long I was on that zero-TRP diet (one or two years) but I didn't notice any effect from it. I didn't suffer from any noticeable deficiencies either.

TRP definitely made my symptoms worse, but it was specifically TRP transported into my brain. Also, events that theoretically would raise IFN-g significantly (exertion, viral infection) increased my symptoms in the same way, so I believe that my symptoms were due to the TRP being converted to neurotoxic kynurenines.
 

dreamydays

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Hello,

Interesting that you responded to Oxymatrine. How long did you take the oxymatrine for before seeing the effect? Also do you know the dose of each capsule? Isn't there a possibility this was also simply having an immune effect or causing some sort of die off reaction, possibly not the latter as it didn't last very long, however maybe the former. This is interesting work, also interesting you tried Holy Basil and it worked, partly because you say its bitter.

I've taken Andrographis Paniculata on and off for 2 years and it's extremely bitter. I am not sure you can get anymore bitter than this plant. Which makes me wonder if it has an IDO effect. All I know is I often improve somewhat when I take it, maybe by 1 energy point on the score chart and then over the course of 2-3 weeks this effect disappears. I have a thread on PR about the plant. Just got me thinking because you mentioned the bitterness. I haven't ever looked into Andro's potential interferon level adjustment, or its constituent andrographolides effects, I will take a look.
Andrographis actually seems to inhibit IDO, but bitter tasting herbs do have a much stronger effect in my experience.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6997866/

However, we now know for certain that we have mitochondrial fragmentation and Andrographis is a potent inhibitor of mitochondrial fission
https://pubmed.ncbi.nlm.nih.gov/31389613/

In terms of Oxymatrine, it took Mrs D a few months. to slowly build up her dose. She would get headaches for a few days then feel some improvement, then she would up her dose. Dr Chia who is the expert on Oxymatrine says his son build up to 8 a day, then had a fever, then he recovered. I can take as many as I want. I find a benefit from it, but i prefer to pulse it every now and again for a few days.
 

dreamydays

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Cornstarch pancakes? :lol: Boring, but zero TRP. I can't remember how long I was on that zero-TRP diet (one or two years) but I didn't notice any effect from it. I didn't suffer from any noticeable deficiencies either.

TRP definitely made my symptoms worse, but it was specifically TRP transported into my brain. Also, events that theoretically would raise IFN-g significantly (exertion, viral infection) increased my symptoms in the same way, so I believe that my symptoms were due to the TRP being converted to neurotoxic kynurenines.
Interesting, most of my food was specialist for people with kidney disease. It was from Italy. There was lots of strange tasting Pasta etc... It was my first thought to try when it was proposed we have tryptophan overload. Once he said it would take 2 years I stopped. It may have been this but I cant remember https://www.flavis.com/en/product-overview
 
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I think oxymatrine apart from any anti viral effect was in my case over stimulating my body/immune system in such a way as to mean that once I came off it the crash was so severe I felt like I was back at day 1 of my illness. I have problems with some treatments creating this false floor where you feel good but you become unstable on it and then you come off it gradually (titrating down) and the crash is just horrible. I'm wary now of anything that makes me high within 20 minutes. C60 had the same effect, so did b12 in high doses in oral form. Whereas other things seem to help.

You're right andro is good at protecting mitochondria, maybe that was the effect I noticed all along. Interesting experiment. Will you be doing more?
 
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I'm working my way through a few treatments at the moment. Currently on the b12 transdermal oils. Next up is gcmaf. My immune system seems to be the main symptom for me, on exertion it just tanks sometimes very severely. e.g. exertion causes a virus that's being fought off to run rampant immediately. The andrographis is a powerful anti viral for colds and winter viruses, so it's excellent for that.

Hopefully the ss-31 trial by members works out well.
 

dreamydays

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I think oxymatrine apart from any anti viral effect was in my case over stimulating my body/immune system in such a way as to mean that once I came off it the crash was so severe I felt like I was back at day 1 of my illness. I have problems with some treatments creating this false floor where you feel good but you become unstable on it and then you come off it gradually (titrating down) and the crash is just horrible. I'm wary now of anything that makes me high within 20 minutes. C60 had the same effect, so did b12 in high doses in oral form. Whereas other things seem to help.

You're right andro is good at protecting mitochondria, maybe that was the effect I noticed all along. Interesting experiment. Will you be doing more?
Also, C60 had no effect on me, b12 sublingually i take sometimes in large doses. The best b12 is from b12oils in Australia. My B12 blood test came back really high after using them . Depending on your genes you might need the hydroxy form which b12oils do. Oxymatrine can be very strong and I believe that its worth a try for most of us, but we are all different. I could take 10 now and have no issues. I just saw that you are already on the transdermal b12 so one step ahead of me lol. Do you take methylfolate?
 

dreamydays

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Obviously I am not a doctor and can't give advice, but I believe Piracetam is the most underrated supplement for those of us who have brain fog (we all do lol), Nootropics Depot are the most trusted supplier. There are loads of videos about it on youtube. Its mainly used by students, to help them learn and pass exams.

I have my doubts about gcMAF, but let us know how you get on. From your signature it sounds like you have had bad luck, like me. The disease can be stronger than any current treatments.
 
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Yes I started the transdermal oil today. It 100% works. I had a nice slow lift up sustained for about 6 to 8 hours without a crash. I also had some chores to do and I don't feel too bad now. However b12 seems to only give me a small lift, although since my mono blood test last month my brain fog isn't worse per say but not great. So I think the b12 will help with that. I'm taking the methyl/ayle one. I don't supplement with methy seperately, I have done though and just found it didn't do anything for me. I do need to get the b2 complex supplement as well.

Well not everyone has brain fog. @Mary has said how she never really had it. My brain fog has always been mild and was significantly worse when I used to eat dairy foods, once I cut those it improved a lot. These days it just feels like bad dyslexia (I have dyslexia anyway) so I guess for me, it just feels like my childhood dyslexia got worse.

I have huge problems with over stimulation as I said, whilst it's annoying it means I can rely on certain adaptogenic traditional mecicines if I end up in a bad way. Specifically the ginsengs korean(red) and siberian. Korean kicks in in a few hours, siberian takes a week or so. But I think it causes immune system imbalance, opening up a hole for infectious pathogens to multiply.

Yes I am hoping gcmaf will boost it so it's a non issue. I am sure it will just over stimulate me. After gcmaf it will be valtrex, so far the valtrex has just given me a mild herx with an unpleasant headache. So that bodes well in my own personal experience of all these different immune modulators. The thing with Andro is, it doesn't over stimulate at all, it actually makes me asthma a bit worse, however that's worthit for the improvements it gives. Thanks for your thoughts, I'll be giving updates as I go along.
 

dreamydays

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I can't tell anyone what to do, but i took Famvir (as it seems more effective than Valtrex) and it took me from being able to go out of the house to housebound. At the time thats what seemed to be the only treatment option really, but it killed me. I feel like some people may get better from Valcyte, but Valtrex and Famvir are toxic. I believed. I was going through die off but in reality it was just damaging my mitochondria more. When the Naviaux paper came out I have to say I agreed with his findings that antivirals aren't the solution.

https://me-pedia.org/wiki/Robert_Naviaux

I am not giving advice, just my opinion, Maybe try my once a week cocktail of pregabalin and modafinil first as its not like committing to six months of antivirals which just drained me completely. I also find phosphatidylserine quite good and slightly calming if you are over stimulated. I don't like being negative about something, obviously you have tested positive for mono, so antivirals are an obvious option but I went through hell on them and kept thinking this might all be die-off and it wasn't at all.
 

Sushi

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-Robert Phair suggested HBOT
Have you explored this? I have recently started mHBOT and have some very preliminary hopeful responses.
I have my doubts about gcMAF,
When it was available a few years ago, I injected GcMAF once a week and it gave me about a 30% improvement. I did this for a couple of years until it was no longer available. Since then I’ve tried GcMAF cream with no result but increased inflammation.
 

dreamydays

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Hi @Sushi great to see you. I have been investigating getting a home one from China (Macy Pan). Not sure if a home one will be strong enough. What hbot are you using? I think it's a good treatment.

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RE: GcMaf, got some cream and it was useless and probably fake. There is a lot of crap out there. At this time I would rather inject the peptides Thymosin Alpha-1 and Thymosin Beta-4 which are easily available from good peptide websites. I am not against trying most treatments, so if a trusted GcMaf was available, then its good to hear it can help some people. There is also the widely available GcMaf probiotics, but not sure they are effective. It's a shame it all went undergound and not tested and researched;
 

Sushi

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I have been investigating getting a home one from China (Macy Pan). Not sure if a home one will be strong enough. What hbot are you using? I think it's a good treatment.

Are you familiar with the Facebook group mHBOT Mild Hyperbaric Oxygen Therapy? It is a very helpful group and I have read about the Macy Pan there. There is a member who is an agent for them. I was wondering if it is FDA approved? Not that this necessarily means much but it is some level of quality control. I know that the Macy Pan is less expensive, so if it is good, why not?

I am using a borrowed Newtowne 34 inch until I discover whether it helps me. Most people are using one that goes to 1.3 ATA along with supplemental oxygen and most are getting marked improvements...over time--like after 20 to 40 dives. I have done 9 and notice some very slight improvements in energy and pain.
At this time I would rather inject the peptides Thymosin Alpha-1 and Thymosin Beta-4 which are easily available from good peptide websites. I am not against trying most treatments, so if a trusted GcMaf was available, then its good to hear it can help some people. There is also the widely available GcMaf probiotics, but not sure they are effective. It's a shame it all went undergound and not tested and researched;
Yes, I have also looked at those peptides but the opportunity to try HBOT came first. I'm not sure that there is a reliable injected GcMAF available now, which makes me very sad as it helped so much. Some have had help from the probiotics but the injected seemed more beneficial. Keep us posted.
 

dreamydays

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Macy Pan have a few videos of their product on YouTube and you can see that their quality control is good for a Chinese product. Its still on my radar, I already have a good quality oxygen machine (Phillips 6/litres). so I could use that with the HBOT. Unfortunately Macy Pan don't sell directly to the UK and have a reseller so to get a good price I would have to arrange for a delivery to France/Netherlands then onto UK which is hard work when I'm so sick. Its definitely on my list for the future though. There is actually a full HBOT treatment available 15 miles away from me but I am too sick. Very frustrating.
 
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I've chatted to people where valcyte made them go from moderate to severe @dreamydays so it varies massively. I think it's down to individual chemistry to be honest. I'm fighting an immune system that can't heal, for whatever reason. But getting rid of EBV might help if valtrex actually worked and achieved b cell clearance of the dormant virus. I also think I might have got an energy lift from valtrex within the first week, but this must be a co-incidence so I am going to try again.

As for the gcmaf cream your probably both right, but it's something I need to tick off my list.

I've looked into HBOT too, if I remember it was just a bit tricky to get it in the UK. Or too expensive, one or the other.
 

Sushi

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Macy Pan have a few videos of their product on YouTube and you can see that their quality control is good for a Chinese product. Its still on my radar, I already have a good quality oxygen machine (Phillips 6/litres). so I could use that with the HBOT. Unfortunately Macy Pan don't sell directly to the UK and have a reseller so to get a good price I would have to arrange for a delivery to France/Netherlands then onto UK which is hard work when I'm so sick. Its definitely on my list for the future though. There is actually a full HBOT treatment available 15 miles away from me but I am too sick. Very frustrating.
One question I had with Macy Pan is customer service and warranties—what happens if you need a repair? Hate to tell you this but a 6 liter concentrator will not overcome the pressure in the chamber and deliver oxygen inside. You need a 10 liter, 20 psi to “push through” the high pressure in the inflated chamber. :(
 

Learner1

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My labs showed that I was in the trap after being prescribed 5-HTP for sleep. Tryptophan was high and 5 HIAA was so high that my doctor suspected a carcinoid tumor which I didn't have. These stayed elevated for about 2 years.

In the meantime, my doctor had me start h-bot which I ended up doing two to three times a week for about two years, mainly to increase oxygen in my blood, and to try to go after my chronic infections.

How about the time Phair was sharing his IDO2 metabolic trap theory, my doctor and I noticed that my 5 HIAA and tryptophan trending downward. They continued to trend downward into the normal range while I continued on h-bot.

So, it seemed that I stumbled into the right answer, before they announced that oxygen could be the answer.

Due to COVID, I discontinued h-bot in late February, and my 5 HIAA bounced up above the normal range again.

Have you explored this? I have recently started mHBOT and have some very preliminary hopeful responses.
I owe you a bit more of an answer, @Sushi but studies have shown h-bot to reduce oxidative stress, which is useful.
 
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dreamydays

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One question I had with Macy Pan is customer service and warranties—what happens if you need a repair? Hate to tell you this but a 6 liter concentrator will not overcome the pressure in the chamber and deliver oxygen inside. You need a 10 liter, 20 psi to “push through” the high pressure in the inflated chamber. :(
Yes, I will need to do more research if I try this in the future. Thanks