Bhupesh Prusty: "we are on a perfect path for identifying potential transferable factors in ME/CFS blood that can cause mito dysfunction..." GoFundMe

[knackers323]

@raghav have you had any effect from kuvan?

 

[raghav]

No. Before I could even get the price from the dealers we had total lockdown. I did not get any response from them. But I think it will be pricey.

 

[Hopeful1976]

I think it's time for the OMF to break their silence and comment on Prusty's work, and to let us know if the treatment they're working on is related to this breakthrough.

I totally agree! Come on OMF.

 

[Hopeful1976]

Anyone know when Dr Prustys papers will concede out?

 

[raghav]

Took my first tablet of mebendazole 100 mg 90 min back. Will post improvements if any.

 

[Badpack]

@raghav and? out for a jog yet?

 

[MonkeyMan]

@raghav and? out for a jog yet?

Ha! I hope raghav is sleeping now (it's 1:15am in India!), and wakes up feeling amazingly good.

 

[Badpack]

Still waiting for my kuding tea. Those whole corona shazam makes delivery from china complicated.

@Hopeful1976 no exact date known. Its up to the journal now.

 

[Badpack]

btw here is a study to back up the claim that mebendazole helps with mitochondria energy. All the other meds mentioned in this study are chemotherapy drugs or just outright kill you if taken. So not many options here besides mebendazole. @raghav

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2715872/

 

[raghav]

Ha! I hope raghav is sleeping now (it's 1:15am in India!), and wakes up feeling amazingly good.

Well I did not feel any energy after the first tablet so after 6 hrs took another 100 mg and then I fell asleep. Today woke up only now and am feeling a bit groggy. Will try one tablet today in the morning and see whether there is any change in energy levels. The problem with this drug is tissue availability is hardly 6-8 % I weigh 255 pounds and so I tried the second tablet and promptly fell asleep. Lets see how it goes today.

 

[raghav]

@Badpack I am curious to know about the royal-tea (maybe that is why they call it hi-tea). Please keep us posted. Meanwhile I will try to find out more drugs like mebendazole from the bird which is tweeting me through telepathy. @Rufous McKinney Were you able to see your TCM doctor or are you all under lockdown like in India ?

 

[Rufous McKinney]

@Rufous McKinney Were you able to see your TCM doctor or are you all under lockdown like in India ?

My TCM Practitioner is well stocked up with supplies... he did a big order in Jan...and I made sure I had most everything here on the shelf ready to go! But he is not doing acupuncture currently, just herbs. Its very reassuring to know- he is 10 blocks away!

So if I do get it, I can call to get- the next phase of herbs if it gets past the Yin Chiao.

Taking lung moistening herbs now (my lungs and throat are very dry)

 

[raghav]

Mebendazole did not give me any relief from fatigue. It made me sleepy and tired. So I stopped after the third dose of 100 mg. But it need not be the same for others. So give it a try. Maybe in my case oxphos is ok and Krebs cycle is the issue. I will see how to address it. I take magnesium injection IM in my thigh muscles. I take 1gm once a week. Maybe I have to distribute it into 3 or 4 shots a week. Any good Krebs cycle supplement ?

 

[ljimbo423]

Any good Krebs cycle supplement ?

B1 and ALA for PDH, Pantethine is a precursor for Coenzyme A, which gets converted to acetyl-coenzyme A and feeds the krebs cycle and BCAA's. There are others that feed the cycle directly, in the purple boxes- (category III)

Category II amino acids enter the oxidation pathway as acetyl-CoA, which directly and independently of PDH fuels the TCA cycle for degradation to CO2. These are isoleucine (Ile), leucine (Leu), lysine (Lys), Phe, tryptophan (Trp), and tyrosine (Tyr).

Category III consists of anaplerotic amino acids that are converted to TCA cycle intermediates, thereby replenishing and supporting the metabolic capacity of the cycle. In this category, we included only amino acids that do not simultaneously belong to categories I or II. Arginine (Arg) was excluded from these analyses for reasons described in Methods. This category consisted of methionine (Met) and valine (Val), which are converted to succinyl-CoA; histidine (His), Gln, Glu (Gln + Glu = Glx), and proline (Pro), which are converted to α-ketoglutarate; and asparagine (Asn) and aspartate (Asp), (Asn + Asp = Asx), which are converted to fumarate or oxaloacetate.

Source

 

[Avenger]

I have only just seen this discussion. Why could Mitochondrial dysfunction simply be due to toxicity from D-Lactic acid or other organic acids?

I had Mitochondrial dysfunction diagnosed by Sarah Myhill and this was backed by two further studies performed by a Newcastle Neurologist. Sheedy had related Neurological and Mitochondrial Dysfunction directly to D-Lactate. I was also diagnosed with Autonomic Dysfunction where 'postganglionic fibres were significantly damaged' and the autonomic dysfunction was put down to toxic neuropahy by the Neurophysiologist.

My symptoms disappear temporarily when I take antibiotics along with Gastointestinal symptoms.

I also had EBV around the time that I became ill and had often wondered if the EBV Virus triggered or could be related to causing Bacterial Overgrowth or possibly Autonomic Dysfunction, leading to Motility Dysfunction (or seratonin issues) which started with D-Lactic acidosis secondary to Bacterial Overgrowth. I would be interested in the findings of this research on Mitochondrial fragmentation.

 

[Avenger]

Hi Rufus,
It is my belief that there may be a number of ways of getting ME, but rather than genetically predisposed that we have manufactured this illness through the overuse of antibiotics and pesticides (including continuous low dose through farming), possibly selecting for individual forms of bacterial overgrowth, the worst being D-Lactic, which I believe has already killed a number of the worst affected patients who had both Gastrointestinal and Neurological illness. Although bacterial overgrowth could be either cause or part of a chain or cycle with other underlying causation including Viral.

The illness could have been caused by a combination of Viral input, through reproduction during lytic or lysogenic cycles in the Gut that are reinforced through antibiotics selecting to make superbacterial overgrowth through resistance giving advantage over other symbiotic bacteria, which cause changes to things like Gut Motility simply through increased metabolites and gasses directly affecting autonomic dysfunction, which in turn increases the production of organic acids such as D-Lactate, which cause Mitochondrial Dysfunction and damage to cells. It would be very good if such a marker could be found.

There could be a number of individual insults such as EBV, which I had at the point when my illness started and so many others; that trigger the problems at a point of low immunity and other contributing factors.

I am going on the results of both Mitochondrial and Autonomic investigations performed by Dr. Myhill and NHS investigations which showed low Mitochondrial Function, which I will dig out. I suffered periods of bad Hypoglycemia, which stopped after using antibiotics. I now believe that the Blood Sugar problems were due to Mitochondrial Dysfunction which stop the ability to transfer or utilize Glucose and Oxygen. Since stopping certain Carbohydrates these problems have not returned although I sill get D-La back if I return to using Carbohydrates for a few days and would dearly love to be able to go back to a normal diet.

I am finding the diet difficult, especially through the Coronavirus. I could only get a few cakes and bread because the meat shelves had been cleared a few weeks ago which started a bad exacerbation, and have often thought of trying an antivirals to see if the overgrowth is related to Viral causation. Any thoughts?

 

[Marylib]

I think it's time for the OMF to break their silence and comment on Prusty's work, and to let us know if the treatment they're working on is related to this breakthrough.

Maybe I missed something, but I didn't know that OMF was working on a specific treatment. Or maybe it is the thing about them using various drugs to see if their impedance model shows a change in vitro rather than in vivo?

 

[MonkeyMan]

Maybe I missed something, but I didn't know that OMF was working on a specific treatment.

@Marylib, see https://forums.phoenixrising.me/threads/omf-test-of-a-new-idea-for-treatment-of-me-cfs.79629/

To quote Dr Davis, " This is a photo of me on a conference call with doctors & researchers planning for a test of a new idea for treatment of ME/CFS. "

 

[Grigor]

It might be the treatment mentioned in this article:

https://m.facebook.com/story.php?story_fbid=2528086370786601&id=1931542240441020

 

[maybe some day]

Davis didnt want to say much about the treament as he didnt want people to self experiment and cause harm. He needed more time. That was from a video from last year. I forgot what conference it was.

I know all of our patience are trashed, with nothing left to spare and wait for answers.

Just bear in mind how much has been done. Afterall, the researchers could just throw their hands in the air and walk away from all of us.