Escaping the metabolic trap (IDO)

[dreamydays]

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.


I owe you a bit more of an answer, @Sushi but studies have shown h-bot to reduce oxidative stress, which is useful.

Would be interesting if Holy Basil helped this, or oxymatrine as it would at least give us a guide to if my research and trials have yielded anything interesting with regards to IDO. Holy Basil gives us zero side effects, but I as I said I use 5-10g organic powder rather than cheap extract tablets. The powder is still very cheap. 3 sweeteners or ribose powder is a must though!!

 

[JES]

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

Yeah this stuff was absolute poison to me as well. I trialed Valtrex several years ago at a minimal dosage of a couple hundred milligrams daily, it crippled me in a week and seemed to trigger some kind of myocarditis. Luckily, I almost never get permanent worsening from medications, so I can afford to try things at a low dosage. It baffles me how Lerner et al. have done studies with antivirals like Valtrex with dosages of several grams without patients dropping off, makes me sometimes wonder if I have the same condition.

I'll give tulsi a go and report back in a few weeks, it's one of the things I haven't tried as it isn't commonly mentioned.

 

[junkcrap50]

One question I had with Macy Pan is customer service and warranties—what happens if you need a repair?

The HBOT chambers are pretty resiliant. But I have had to send my Oxyhealth in for repairs 2x. Once was entirely my fault on the first time I used it. I placed the chamber too close to a wall, so that when it inflated, it expanded and pressed against a window and cause the window to unseal. The second time was due to a poor repair by OxyHealth on the main, biggest window they replaced. (They replaced all windows on my first repair, not just the leaky one). It was sort of expensive for the first repair (I think $600) but I got a very good price on the chamber, used. The second repair they paid for it. My chamber is ~12 years old.

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.

Technically, not necessarily true. You can check the specifications of the concentrator and view it's output pressure. There are a very few 5L concentators that have high enough psi. However, most with the required PSI are 10L, so this is a good guideline. I also recommend a 10L because you can raise your partial pressure of oxygen much higher with more oxygen (10L/min vs 5L/min). Also, I was able to breath 100% oxygen with a resevoir bag at 10L/min. It provided enough oxygen flow to refill the reservoir bag while I was exhaling.

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.

Wow! Have you shared this with @HTester ?

 

[Learner1]

The HBOT chambers are pretty resiliant. But I have had to send my Oxyhealth in for repairs 2x. Once was entirely my fault on the first time I used it. I placed the chamber too close to a wall, so that when it inflated, it expanded and pressed against a window and cause the window to unseal. The second time was due to a poor repair by OxyHealth on the main, biggest window they replaced. (They replaced all windows on my first repair, not just the leaky one). It was sort of expensive for the first repair (I think $600) but I got a very good price on the chamber, used. The second repair they paid for it. My chamber is ~12 years old.


Technically, not necessarily true. You can check the specifications of the concentrator and view it's output pressure. There are a very few 5L concentators that have high enough psi. However, most with the required PSI are 10L, so this is a good guideline. I also recommend a 10L because you can raise your partial pressure of oxygen much higher with more oxygen (10L/min vs 5L/min). Also, I was able to breath 100% oxygen with a resevoir bag at 10L/min. It provided enough oxygen flow to refill the reservoir bag while I was exhaling.


Wow! Have you shared this with @HTester ?

Nope, I should, though...

 

[Learner1]

Would be interesting if Holy Basil helped this, or oxymatrine as it would at least give us a guide to if my research and trials have yielded anything interesting with regards to IDO. Holy Basil gives us zero side effects, but I as I said I use 5-10g organic powder rather than cheap extract tablets. The powder is still very cheap. 3 sweeteners or ribose powder is a must though!!

Ribose powder is useless for me, as is nicotinamide riboside.

Why would you think that holy basil or oxymatrine would have anything to do with the IDO2 trap, which has to do with tryptophan and NAD production?

Oxymatrine seems to be an immunomodulator which is unrelated. I'd be hesitant as it might interfere with what I'm using now on my immune system.

I'd be hesitant to use holy basil, as it reduces cortisol, which I am short of already, and increases estrogen and blood pressure which could be dangerous for me.

Really these seem to be barking up a different tree...

 

[dreamydays]

The main way to boost IDO1 is to boost interferons, particularly interferon gamma. Holy basil (Tulsi) strongly boosts interferon gamma selectively.
https://pubmed.ncbi.nlm.nih.gov/21619917/
https://pubmed.ncbi.nlm.nih.gov/1907934/

Oxymatrine boosts all interferons.

Ribose has nothing to do with any of this, but in order to drink the Holy Basil in water you will need a sweetener, I just use a few artificial ones but I know some people might prefer ribose.

I know that IDO1 is substrate limited but it still can be boosted to an extent which may be better than nothing.

 

[Sushi]

The HBOT chambers are pretty resiliant. But I have had to send my Oxyhealth in for repairs 2x. Once was entirely my fault on the first time I used it. I placed the chamber too close to a wall, so that when it inflated, it expanded and pressed against a window and cause the window to unseal.

Just to make you feel better, I know someone who punched out a wall by placing the chamber too close to it on the first inflation!

 

[dreamydays]

Yeah this stuff was absolute poison to me as well. I trialed Valtrex several years ago at a minimal dosage of a couple hundred milligrams daily, it crippled me in a week and seemed to trigger some kind of myocarditis. Luckily, I almost never get permanent worsening from medications, so I can afford to try things at a low dosage. It baffles me how Lerner et al. have done studies with antivirals like Valtrex with dosages of several grams without patients dropping off, makes me sometimes wonder if I have the same condition.

I'll give tulsi a go and report back in a few weeks, it's one of the things I haven't tried as it isn't commonly mentioned.

I thought that a HBV or HHV6 had caused my condition and so I needed to obliterate them, but the antivirals obliterated me. Lerner and his 6 months before improvement was what kept me going and caused me untold damage. All Naviuax, OMF and Prusty research points towards tiny latent proteins which would be present in the 90% of the world's population who have had these viruses. I am pleased for the odd person who they help but if someone gets 'die-off' then I think its their mito which are that are dying. The Tulsi gave me a small boost within the first few days, unfortunately we all have different responses to everything but I have took about 100 medications and antivirals are the only ones that have crippled me and I stuck with them for over 6 months due to this only trial that offered a promising result.

 

[Wendi]

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)

View attachment 39131View attachment 39135

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.
View attachment 39129


In terms of doses Interferon-Beta injections are stronger so I tried them next. View attachment 39132View attachment 39133

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/
View attachment 39134
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.

Hello, sorry I have a few questions if you don't mind as still relatively knew to my diagnosis of CFS, although had Fibromalgia for many years.
What is the holy basil for? Which site did you use in Russia and also is there a good site to buy oxymatrine? Many thanks

 

[Learner1]

is there a good site to buy oxymatrine?

Perhaps you would want to read this thread:

https://forums.phoenixrising.me/thr...matrine-99-powder-selling-on-ebay-sold.81103/

 

[bread.]

I thought that a HBV or HHV6 had caused my condition and so I needed to obliterate them, but the antivirals obliterated me. Lerner and his 6 months before improvement was what kept me going and caused me untold damage. All Naviuax, OMF and Prusty research points towards tiny latent proteins which would be present in the 90% of the world's population who have had these viruses. I am pleased for the odd person who they help but if someone gets 'die-off' then I think its their mito which are that are dying. The Tulsi gave me a small boost within the first few days, unfortunately we all have different responses to everything but I have took about 100 medications and antivirals are the only ones that have crippled me and I stuck with them for over 6 months due to this only trial that offered a promising result.

have you tried vermox or methylprednisone yet?

Me/cfs in people that are at least homebound in my opininion almost always have a mitochondrial disorder of primary or secondary (or most likely a mixture of both) origin.

It is extremely obvious.

What was your course of disease?

 

[Learner1]

methylprednisone yet?

Me/cfs in people that are at least homebound in my opininion almost always have a mitochondrial disorder of primary or secondary (or most likely a mixture of both) origin.

Methylprednisolone is a steroid. According to drugs.com, it effectively controls inflammation and an overactive immune system but may not be suitable for everybody. Long-term use is limited by potentially severe side effects such as adrenal suppression and an increased risk of infection.

It doesn't do much for mitochondria, and it is an immune suppressant.

Mitochondrial dysfunction varies between Emmy / CFS patients. Some of the researchers have found very little mitochondrial dysfunction and others have found quite a bit. But I do agree that for many of us primary or secondary mito dysfunction (or both) can be a factor, and addressing these through mito cocktails can be very helpful.

 

[Hopeful2021]

Just to make you feel better, I know someone who punched out a wall by placing the chamber too close to it on the first inflation!

@Sushi
@junkcrap50

do you both do hbot?
And other oxygen therapy?
@Mary and I are busy setting up what works for us individually

I'm 4 years into hbot but at clinic

 

[Hopeful2021]

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.


I owe you a bit more of an answer, @Sushi but studies have shown h-bot to reduce oxidative stress, which is useful.

@Learner @Sushi

it's my understanding it helps to be in ketosis for HBOT to help make huge dent in oxidative stress

there's breathing device to track breaths and hrv
Would either of you try such a device?
im willing but funds going to other things for a few months
Forget name frontier ??? Something

oh yes Fourth Frontier
HBOT helped me with strength too
But this new desaturation/saturation has given me real strength and energy and new lease on life

I'm still doing hbot -- it's still awesome and i still will do it.

 

[Hopeful2021]

In this post there's talk of peptides and viruses... anyone here tried Ozone therapy... specifically ten pass?
Thks

 

[wigglethemouse]

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.

Yeah this stuff was absolute poison to me as well. I trialed Valtrex several years ago at a minimal dosage of a couple hundred milligrams daily, it crippled me in a week and seemed to trigger some kind of myocarditis. Luckily, I almost never get permanent worsening from medications, so I can afford to try things at a low dosage. It baffles me how Lerner et al. have done studies with antivirals like Valtrex with dosages of several grams without patients dropping off, makes me sometimes wonder if I have the same condition.

I am another one that was poisoned by Famvir. Took me from working to severe and mostly bedbound, permanently. I started at 1g dose I thnk. By next appointment I was worse so they told me the issue was that I needed a higher dose. I showed the clinic the Naviaux/Davis statement about how antivirals can be damaging to mitochondria and they told me they had gone back on that and that Famvir was perfectly safe. The higher dose took me over the edge of the cliff to severe ME. They then refused to offer phone appts and told me to come back to the clinic when I was able to physically. Bastards. I found out afterwards Naviaux/Davis never went back on that statement.

 

[lateM98]

The observation that recovering from bacterial infection is accompanied by improvement is one I had and experienced as well. The improvements lasted for 3 weeks. I tried to replicate it several time but without success. I tried BCG vaccination at 10 times the dose used in infants, and it only produced a mild fever and vaccination scares.. Have you looked into Mifamurtide? It's an analog of gram-positive bacteria cell-wall component that's used for bone cancer in Europe. Also have you ever tried serine (l-serine) supplementation?

 

[Sushi]

@Sushi
@junkcrap50

do you both do hbot?
And other oxygen therapy?
@Mary and I are busy setting up what works for us individually

I'm 4 years into hbot but at clinic

I am doing mHBOT. Only16 dives in but I’m already beginning to notice positive changes.

@Learner @Sushi

it's my understanding it helps to be in ketosis for HBOT to help make huge dent in oxidative stress

there's breathing device to track breaths and hrv
Would either of you try such a device?
im willing but funds going to other things for a few months
Forget name frontier ??? Something

oh yes Fourth Frontier
HBOT helped me with strength too
But this new desaturation/saturation has given me real strength and energy and new lease on life

I'm still doing hbot -- it's still awesome and i still will do it.

Right now I don’t want to tract HRV and breathing as I have other things going on that would interfere.

In this post there's talk of peptides and viruses... anyone here tried Ozone therapy... specifically ten pass?
Thks

I did quite a lot of ozone therapy but found IV hydrogen peroxide more effective—except for the negative effect on the veins.

 

[Learner1]

The main way to boost IDO1 is to boost interferons, particularly interferon gamma. Holy basil (Tulsi) strongly boosts interferon gamma selectively.

It might be wise to test your interferon gamma first. Mine was sky high so increasing it might not be the wisest idea.

my understanding it helps to be in ketosis for HBOT to help make huge dent in oxidative stress

They might be synergistic as they both can decrease oxidative stress. however, I was unable to stay in ketosis because my need for amino acids was too high, so I've been only on a low carbohydrate diet.

there's breathing device to track breaths and hrv
Would either of you try such a device?

I have an Oura ring which tracks my HRV at night. one thing I've noticed is both the beta blocker I'm on, as well as Benadryl which I take around my IVIG for 3 days every 3 weeks, can dramatically alter my HRV, so I haven't found that HRV is the most useful thing to track.

post there's talk of peptides and viruses... anyone here tried Ozone therapy... specifically ten pass?

I've done IV ozone and UVBI, but not 10 pass. However I've been a patient into clinics with 10 pass available, and it can be greatly helpful to people for different reasons. It is helpful for Lyme especially. My doctors wanted to do it with me, but I have hyper coagulation, and they were concerned that my blood would come up the machine, which wouldn't be very good for me, even with use of vitamin C or Heparin.

 

[Hopeful2021]

It might be wise to test your interferon gamma first. Mine was sky high so increasing it might not be the wisest idea.

They might be synergistic as they both can decrease oxidative stress. however, I was unable to stay in ketosis because my need for amino acids was too high, so I've been only on a low carbohydrate diet.

I have an Oura ring which tracks my HRV at night. one thing I've noticed is both the beta blocker I'm on, as well as Benadryl which I take around my IVIG for 3 days every 3 weeks, can dramatically alter my HRV, so I haven't found that HRV is the most useful thing to track.


I've done IV ozone and UVBI, but not 10 pass. However I've been a patient into clinics with 10 pass available, and it can be greatly helpful to people for different reasons. It is helpful for Lyme especially. My doctors wanted to do it with me, but I have hyper coagulation, and they were concerned that my blood would come up the machine, which wouldn't be very good for me, even with use of vitamin C or Heparin.

@Learner1 --- thx

Was the IV regular style Ozone the same result as the UVBI ozone...?? Was it a helpful therapy or did it make anything worse?
The device is called Fourth Frontier.
LOL- if i wear my Oura I can't sleep well at all ... LOL

i have some measure head band sleep wave device... waiting for it to off gas. Too strong tire smell. Ick.