Potential Suramin Alternatives - Sytrinol and Kudzu (Anti Purinergic Therapy)

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@Learner1
i had a doctor at one point (dealt with vets and combats sports) that was convinced injuring to the brain was causing inflamation and then downstream hormone disruption. So his thing was the best done hormone replacement. that is, with least side effects, lowest dosages, etc. For guys the most common was testosterone.

i was shocked to find my testosterone was low. has been for 10 years. And i did try replacement. more boners for sure. but depression, lack of focus, energy did not change. this was a 6 week trial. I feel like once you get on that bus it's hard to get back off. the erections were nice....but not at the cost of being on T for the rest of my life some what may in terms of side effects. I did realize one thing: my hormones (T, cortisol, maybe thyroid) are not where they should be.

there is also an anti inflammatory theory on how many antidepressant drugs work. and in fact many do take 1-3 months to kick in. that was the case with me and wellbutrin. i know this theory has been attacked but I have found good evidence that at least wellbutrin dramatically reduced some inflammation markers. however i suspect "inflamation" is about as general a terms as depression of CFS. And even if it does this there is no proof that it's the mechanism. the official theory is also far from solid imo. re-uptake.

my personal experience has told me i should not get over invested in any theory or treatment no matter how much sense it makes on paper. i spent 2 years devoted to chelation. that should have been 6 months. i basically ask my doctors these days how long it will take for thier suggestions to bare results. no results and i'm done. most doctors have a blind spot when it comes to admitting their approach isn't working.

i am dabbling with herbs at the moment. Tulsi, bacopa, artemisia. The tulsi showed a lot of promise after maybe 3 week on and now has waned to the point i'm unsure. In my mind the anti inflamatory window of response is 3 months. no effect in that time and i move on.
 
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Isn't it odd your inflammation is still high after so many successful interventions for infections and toxins?[/QUO
Appreciate the revival of this thread @pattismith, some of it chimes with me.

Particularly the stuff about IL-6 and TNF-alpha - I've recently discovered cumin has significant effects on my fatigue and the active ingredient cuminaldehyde suppresses these...

Has anybody on PR been known to have tried Suramin?

Or has anybody tried anything based off this thread?
Rupatadine suppresses tnf alpha , as well as histamine and stabilizing mast cells
 

Learner1

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@cporro

My doctor, a ME/CFS specialist, told me the reason I'm on naltrexone is to reduce brain inflammation.

Normalizing hormone levels can be extremely helpful. Many have low thyroid or cortisol levels which can dramatically affect metabolism or energy production.

I've found two concepts are worthwhile:

1) interventions work as part of complex biochemical systems. Adding a single intervention while neglecting other necessary substrates may create a situation that makes the intervention less than successful.

2) improving multiple processes over time takes a great deal of patients. It's not as simple as getting fixed by finding the right pill - we may have had one or more initiating triggers, but a cascade of other issues has happened since, so it's not easy to put the genie back into the bottle. A systematic approach is better.
 

Ema

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I have some dipyridamole here, which I have not tried, but will do soon. Increasing extracellular adenosine with dipyridamole has some benefits in schizophrenia — see here.
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Hi there, @Hip, so glad to see that you are, as always, a few steps ahead of me! Hope you are as well as possible these days.

Did you ever try dipyridamole? Do you remember what dose you considered? It's next on my list.

I found this article that got me curious, but I can't remember your formula for converting test tube doses at all.

Importantly, DIP concentrations used in the present study were close to the range of the plasma concentration attained after oral administration in humans (Grem and Fischer, 1989). Remarkably, overdose case reports showed that higher DIP doses might be tolerated in humans, suggesting that even higher dosing could be used in new clinical settings (Lagas et al., 2011).
Any thoughts?
 

Hip

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Hi there, @Hip, so glad to see that you are, as always, a few steps ahead of me! Hope you are as well as possible these days.

Did you ever try dipyridamole? Do you remember what dose you considered? It's next on my list.
Hi @Ema, nice to see you. Hope your ME/CFS still remains improved.



I found this article that got me curious, but I can't remember your formula for converting test tube doses at all.
I don't think you are going to have much luck in trying to get the same dipyridamole concentrations in vivo as they used in vitro. Looks like the anti-EBV effect of dipyridamole was obtained at a concentration of 10 μM and higher.

Now I have a note on my computer saying that the peak blood level of dipyridamole attained after a typical 200 mg oral dose is around 4 μM. So to begin with, that looks good.

But unfortunately dipyridamole has very high plasma protein binding of 99%. That means you lose 99% of the dipyridamole in your blood when it binds to proteins.

So the effective free dipyridamole concentration in the blood will be 100 times less, at 0.04 μM. That would be far too low to have an antiviral effect against EBV, assuming my calculation here is right.

Most of the time in these in vitro studies they use concentrations which are far too high to be achieved in vivo. So you get lots of studies showing antiviral effects in vitro, but they don't pan out in vivo.



I did try dipyridamole myself for a short period, but for a different reasons (I hoped it might help certain mental health symptoms). I used 200 mg daily. I found it made me a tired, but when I switched to taking it before bed, this worked to advantage, as dipyridamole then promoted a nice deep long sleep.



A couple of new EBV treatments you might like to look into are: spironolactone and ritonavir (one ritonavir recovery story here).



I have currently just started Dr Markov's autovaccine treatment for ME/CFS, which he claims has permanently cures 93% of all ME/CFS patients. He has a unique theory on what causes ME/CFS, and a unique cure. Unfortunately the cure requires 2 to 3 years of treatment.
 

serg1942

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No, but I'll take some of that ATP disodium salt, please!

Seriously, I had a long conversation with Dr. Naviaux about the CDR and discussed with him the kinds of metabolomic manipulation I have been doing with my naturopathic doctor as well as attacking my infections. He was very supportive of this approach abdcsaid th st suramin (ow whatever alternative you find) woukd be useful only AFTER moving each of the biichemical processes from winter metabolism to sumner metabolism in the diagram in his paper.

That is, you kill off ant infections and fix all of the biochemistry And see if the body kicjs into gear and starts behaving normally. If it does, you dont need suramin.only Only if it doesn't, do you use it.

So, the work at hand is to ferret out any infections and treat them (dealing with any immune issues on rhe way), identify any deranged biochemistry, like amino acids, B vitamins, mineral imbalances, oxidative and nitrisative stress, Krebs cycle alterations, sphingolipids, etc. and fix those first.

And, only then try suramin or something on that research lab supplier's list.
Hi @Learner1

I guess you meant to say that we need to move the biochemistry from the summer to winter, right? :

https://www.google.com/search?q=Nav...biw=412&bih=831&dpr=2.63#imgrc=UBjJPhqp3dxfUM


I'm very interested in this point because I have changed my diet to a high ketogenic one and I'm still wondering if Dr Naviaux would think that ketosis is a wise movement towards getting out of the CDR state or not.

On the one hand, it makes sense to be in an anti-inflammatory state which favors mitochondrial fusion and biogenesis. However, the ketogenic state inhibits mTOR, similar to fasting, and fasting leads the Dauer worm to get into the CDR state...

May I ask what's your take on this?

Thank you!!

Sergio
 

Learner1

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I guess you meant to say that we need to move the biochemistry from the summer to winter, right?
I did! Good point!
I'm very interested in this point because I have changed my diet to a high ketogenic one and I'm still wondering if Dr Naviaux would think that ketosis is a wise movement towards getting out of the CDR state or not.

On the one hand, it makes sense to be in an anti-inflammatory state which favors mitochondrial fusion and biogenesis. However, the ketogenic state inhibits mTOR, similar to fasting, and fasting leads the Dauer worm to get into the CDR state...

May I ask what's your take on this?
My take on it is that a lower carbohydrate diet is beneficial for many reasons, but a keto diet or fasting may be too extreme for several reasons:

1. Many ME/CFS patients need more amino acids than healthy people. We use them up too fast, and aminos are important for healing, for mitochondrial function and Krebs cycle function, making catecholamines, etc. It is not possible to get enough aminos on keto I found I needed around 1.6-1 8g/kg body weight at my sickest, and 1.2-1.4g/kg now.​
2 Ketosis over a lengthy period of time is stressful and can burn out adrenal function. Fasting is also stressful.​
3. Though keto diets can be nutrient dense, they are restrictive and it is likely one might miss out on several nutrients and either become deficient, or more deficient than at the outset. Fasting definitely promotes nutrient deficiency.​
These are my opinions after researching the subject extensively and experimenting with it and discussing it with others. I will say that if one is fighting cancer, a keto diet should definitely be considered and discussed with one's oncologist. Likewise, it has been proven effective for certain seizure patients.

For ME/CFS, a nutrient dense diet is essential, along with a thoughtful and comprehensive supplement program. Avoiding processed foods and added sugar is also wise - helps to avoid swings in blood sugar which can affect energy and functioning upright.
 

serg1942

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I did! Good point!

My take on it is that a lower carbohydrate diet is beneficial for many reasons, but a keto diet or fasting may be too extreme for several reasons:

1. Many ME/CFS patients need more amino acids than healthy people. We use them up too fast, and aminos are important for healing, for mitochondrial function and Krebs cycle function, making catecholamines, etc. It is not possible to get enough aminos on keto I found I needed around 1.6-1 8g/kg body weight at my sickest, and 1.2-1.4g/kg now.​
2 Ketosis over a lengthy period of time is stressful and can burn out adrenal function. Fasting is also stressful.​
3. Though keto diets can be nutrient dense, they are restrictive and it is likely one might miss out on several nutrients and either become deficient, or more deficient than at the outset. Fasting definitely promotes nutrient deficiency.​
These are my opinions after researching the subject extensively and experimenting with it and discussing it with others. I will say that if one is fighting cancer, a keto diet should definitely be considered and discussed with one's oncologist. Likewise, it has been proven effective for certain seizure patients.

For ME/CFS, a nutrient dense diet is essential, along with a thoughtful and comprehensive supplement program. Avoiding processed foods and added sugar is also wise - helps to avoid swings in blood sugar which can affect energy and functioning upright.
Thank you for replying and for sharing your opinion on the keto diet!

So do you think Dr. Naviaux thinks that a keto diet might be beneficial to prepare the body to get out of the CDR state?

Let me tell you my experience just out of curiosity: I am having to follow a carnivore/cero carb diet out of obligation, in order to heal my very severe SIBO/IBS, and my experience so far has been positive. Not only I am healing from the terrible IBS, but my blood tests are better than ever. For example, my platelets are normal for the first time in 16 years of disease. Also, most of my blood vitamins/minerals are higher than usual , including folic acid, B12, zinc, copper or vitamin A (blood is unreliable, but I guess it is good to have levels higher) . And even my lymphocytes and total leukocytes are higher than ever, not to mention my excelent lipid profile (high HDL, low TG, low insulin...). If only I didn't suffer from severe ME/CFS I'd be happy!! :)

As for the adrenals, I don't think I am exhausting them, because my cyrcadian rhythm is normal for the first time in 16 years. (It used to be reversed).

Regarding aminoacids, I am not that worried, given my high protein intake plus the fact that my albumin, prealbumin and total blood protein are higher than normal, and my total IgM, IgG are also higher than usual. But it is impossible to know for sure without proper tests...

And, as for my ME/CFS, well, I feel just a bit better, with better cognitive capacity.

But I have to say that I passed a terrible month getting adjusted to ketosis, where I could barely move due to the terrible muscle weakness and heaviness. It is really hard to get used to burning fat!!

But I agree with you that it is necessary to pay attention to possible nutrients deficiency when in ketosis, such as electrolytes, B1, iodine or omegas. In this regard adding organ meats to the diet I think it is mandatory.

Thank you so much for the magnificent work you do on the forum. It's always enlightening reading your posts!

Take care!
Sergio
 

Learner1

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So do you think Dr. Naviaux thinks that a keto diet might be beneficial to prepare the body to get out of the CDR state?
I did not discuss it with him. I don't know what he would think. You could try writing to him, although I have not found him to be terribly responsive to emails.
Let me tell you my experience just out of curiosity: I am having to follow a carnivore/cero carb diet out of obligation, in order to heal my very severe SIBO/IBS, and my experience so far has been positive. Not only I am healing from the terrible IBS, but my blood tests are better than ever. For example, my platelets are normal for the first time in 16 years of disease. Also, most of my blood vitamins/minerals are higher than usual , including folic acid, B12, zinc, copper or vitamin A (blood is unreliable, but I guess it is good to have levels higher) . And even my lymphocytes and total leukocytes are higher than ever, not to mention my excelent lipid profile (high HDL, low TG, low insulin...). If only I didn't suffer from severe ME/CFS I'd be happy!! :)
I don't doubt that your experience has been positive given the circumstances you describe. From the information I've gathered, keto diets for a particular purpose can be greatly successful. Long term, though, the risks may outweigh the benefits. There are exceptions, as in epilepsy or cancers.

SIBO/IBS rob you of nutrients and promote food allergies, so stopping that process would definitely be beneficial.
As for the adrenals, I don't think I am exhausting them, because my cyrcadian rhythm is normal for the first time in 16 years. (It used to be reversed).
Again, I think given your circumstances, it makes sense. My question is whether long-term you wouldn't experience negative effects. You might enjoy reading through Peter Attia's Eating Academy, his experimentation with ketosis.
Regarding aminoacids, I am not that worried, given my high protein intake plus the fact that my albumin, prealbumin and total blood protein are higher than normal, and my total IgM, IgG are also higher than usual. But it is impossible to know for sure without proper tests.
I'm a little mystified by your being high protein and in ketosis. The reason I couldn't continue doing ketosis was my protein needs were too high. Keto usually means 10% of calories from protein or less. My need tends to run between 20 and 25%.
And, as for my ME/CFS, well, I feel just a bit better, with better cognitive capacity
keto diets are known to do that, and SIBO/IBS are known to produce brain fog.
I have to say that I passed a terrible month getting adjusted to ketosis, where I could barely move due to the terrible muscle weakness and heaviness. It is really hard to get used to burning fat!!
I don't doubt that. The keto flu is well known. I went keto from being low carb to start with, but cutting carbs all of a sudden would be difficult.
But I agree with you that it is necessary to pay attention to possible nutrients deficiency when in ketosis, such as electrolytes, B1, iodine or omegas. In this regard adding organ meats to the diet I think it is mandatory
those aren't the nutrients that one is lacking on a keto diet. Antioxidants, folate, and certain minerals are. Organ meats would give you vitamin C, though. There's a book called Healthiest Foods on Earth That goes through the different nutrients and shows you what the best sources of each are and some of the lists only contain plant foods.
Thank you so much for the magnificent work you do on the forum. It's always enlightening reading your posts!
You're welcome. Sounds like you're on a good track. Just ensure that you're getting enough of all of the nutrients your body needs. 😉
 

serg1942

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Thanks again for sharing your thoughts. I will probably write to Dr Naviaux, since this is a crucial question.

As for keto, actually for the moment, I think that that ketosis is the default metabolic state imprinted in our genes, at least for many of us, so I am not worried about long term, specially if I feel better (for example my mom is keeping a mild degree of CFS thanks to keto. Otherwise she would be severe).

(BTW, if you have literature showing otherwise please do let me know. The studies I have reviewed show that for a couple of million years we were mostly carnivores, so ketosis should have been the default state.. But I'm open to read different views on this!) :)

Anyway, I am not just doing keto, but carnivore, and this alone is a different world, where B9 for example is not a problem, but electrolytes, B1 and vitamin C could be.

Thanks for the recommendation. I will read Peter Attia's experience! And will also take a look at the book you recommend.

Oh! As for the protein, well, 80% of my calories come from fat and 20% from protein (a ratio of 2:1 fat to protein). I'm following this ratio because it is the one recommended by Dr. Zsofia Clemens from Paleomedicina for many autoimmune diseases. And this ratio allows me to take abut 100-120 grams of protein daily, with a high degree of ketosis.

Thanks again and take care!
Sergio
 

hapl808

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(BTW, if you have literature showing otherwise please do let me know. The studies I have reviewed show that for a couple of million years we were mostly carnivores, so ketosis should have been the default state.. But I'm open to read different views on this!) :)
I think this literature is speculative, so it's very hard to 'know' with any degree of certainty. For the first couple of million years we did not have hospitals or planes, but I'm not sure they are bad for us (well, hospitals are probably bad for us). :)

I am very flexible metabolically and have experimented with keto off and on for years, and carnivore a couple times as well. I think keto is quite interesting as I find very little issue 'switching over', maybe just a few days of adaptation. But while it seems to help my SIBO a bit on its own, I've found a more varied diet with higher supplementation more effective for both my SIBO and ME/CFS. I found keto and even more so carnivore limited my tolerance to any supplements.

But of course the challenge is we're all different, so do whatever works best for you. This is where doctors can be useless, because most prescribe a one-size-fits-all regimen.