it seems ron davis may have a new potential treatment

[dylemmaz]

i was able to get whitney to respond to me in one of his most recent instagram posts. he said that he has been feeling worse recently, the worst he has in a year. reason being because of a test that ron had him do for a new medication. i had asked him if the test he was doing would lead to a potential treatment for the community, or if we could have this test performed ourselves. this is what he responded with:

“it’s a test for a possible drug that Ron Davis is working on. I am the volunteer guinea pig. If the drug helps you will all be able to take the test and the drug very soon. ❤️“

my suspicions are copaxone. ron has said recently he has been trying to alter the drug to avoid allergic reactions developing over time. if you aren’t aware copaxone was able to make sick cells react in the same way that healthy cells do. according to the nanoneedle device the cfs cells couldn’t be differentiated between healthy control cells after treatment with the drug (my layman’s understanding). this is just my suspicion and i could be completely wrong.

the only thing is, i cant wrap my head around what test whitney would have had to do in order to test for this medication. or what tests one would even have to do to ”test for a medication?” what does that mean???? the testing must have required something to do with exertion, because whitney said after the testing he felt the worst he has in a year? i suppose it could have been some sort of metabolic exercise testing?

what drug do you think ron may be working on?

 

[Rufous McKinney]

what drug do you think ron may be working on?

Firstly, I am sorry to learn Whitney is struggling.

what you describe makes sense, and its really likely he maybe trying out some altered form of copaxone. Was there one other substance we heard of early on the also corrected the signal? SS 31 ?

I could see them- experimenting. That shows just how desperate we are.

I can only imagine - taking any new thing is such a risk with us, our bodies are so sensitive. So i do hope we can learn more.

Just because something can correct the signal may not mean it can be tolerated, its side effects put up with etc.

It also possible to feel MUCH WORSE if a treatment in fact may be- awakening our immune system, if it results in die offs, or other- phenomenon (see recent threads here about detox protocols).

So lets hope this is- a GOOD sign of Better Things to Come

 

[Judee]

I almost wish they were not testing it on him though. I worry that his health is so fragile as is.

 

[Martin aka paused||M.E.]

I almost wish they were not testing it on him though. I worry that his health is so fragile as is.

I took Copaxone for about three months and it did nothing. Other ppl here on PR and on IG didn’t have a response either. The only person I know is Rachel Riggs

 

[raghav]

Copaxone made me very anxious and jittery and I had to discontinue after 11 days. Hope it is something else. Even if it is copaxone if it works in Whitney it will help in understanding why it worked and the pathways involved and help in finding alternatives for those in whom it did not work.

 

[dylemmaz]

I took Copaxone for about three months and it did nothing. Other ppl here on PR and on IG didn’t have a response either. The only person I know is Rachel Riggs

interesting, thanks martin. it was just my suspicions that it could be copaxone. it’s very possible, even more likely i suppose, that it is something completely different. ron seems to have so many projects going on at once that it’s difficult to guess as to what it could be

 

[Alvin2]

Could be something like Prednisone, Cyclophosphamide, or something that affects that large protein that causes the signal in the nanoneedle.
Who knows, maybe they got their hands on some Suramin.

 

[Possibly James May]

@dylemmaz,

I'm kind of hoping it's nothing that Dr. Davis has publicly mentioned that cured patients blood when using the nanoneedle. As Martin mentioned, there has been people that experimented with the drugs Dr. Davis mentioned. The one most tried, with roughly ten patients was Copaxone, no one really benefited from it minus one person as stated above is Rachel Riggs. To my understanding, the community is torn on whether she has ME/CFS, MS or something that looks like MS due to her MRI showing lesions in her brain. The other two drugs Suramin and SS-31 (not FDA approved) have been tried by 2-3 patients respectively, neither showed any benefit that placebo couldn't explain.


That being said, I wouldn't think that the test that Whitney had was a blood test. I’m thinking if he's able to write lenghty blog and Facebook posts, and lay up in bed a needle prick shouldn't crash him. I'm thinking something on the lines of a makeshift CPET or maybe he had to go into a clinic to get an MRI, but my guess is as good as anyone elses. Whatever it is I hope It's right and we can all rid this vile disease from our bodies soon.

 

[Martin aka paused||M.E.]

@dylemmaz,

I'm kind of hoping it's nothing that Dr. Davis has publicly mentioned that cured patients blood when using the nanoneedle. As Martin mentioned, there has been people that experimented with the drugs Dr. Davis mentioned. The one most tried, with roughly ten patients was Copaxone, no one really benefited from it minus one person as stated above is Rachel Riggs. To my understanding, the community is torn on whether she has ME/CFS, MS or something that looks like MS due to her MRI showing lesions in her brain. The other two drugs Suramin and SS-31 (not FDA approved) have been tried by 2-3 patients respectively, neither showed any benefit that placebo couldn't explain.


That being said, I wouldn't think that the test that Whitney had was a blood test. I’m thinking if he's able to write lenghty blog and Facebook posts, and lay up in bed a needle prick shouldn't crash him. I'm thinking something on the lines of a makeshift CPET or maybe he had to go into a clinic to get an MRI, but my guess is as good as anyone elses. Whatever it is I hope It's right and we can all rid this vile disease from our bodies soon.

No it was surely a drug test. On twitter you could read that he said “treatments are in sight”

 

[Possibly James May]

@Martin aka paused||M.E. ,

Do you have the link by any chance I'm looking on Whitney's, Janet's and the OMF's twitter and i'm not finding anything.

 

[Martin aka paused||M.E.]

This

 

[Possibly James May]

Perhaps it's something related to the Christmas & Cure Year posts. Considering how much Abilify helped him, along with Whitney saying "They have studied the affect Abilify has on ME/CFS patients at a molecular level and figured out some ways to possibly accomplish some similar things in a much more effective way" I would think that's where all their time and energy is being used currently. If that's the case, I wouldn't even know where to start to try to figure out what the test might be.

 

[dylemmaz]

Perhaps it's something related to the Christmas & Cure Year posts. Considering how much Abilify helped him, along with Whitney saying "They have studied the affect Abilify has on ME/CFS patients at a molecular level and figured out some ways to possibly accomplish some similar things in a much more effective way" I would think that's where all their time and energy is being used currently. If that's the case, I wouldn't even know where to start to try to figure out what the test might be.

ron has recently said he’s been doing a meta analysis on all drugs that may work in a similar way to abilify, focusing on their impact on dopamine. so it’s plausible that this is the treatment he’s talking about. although i suppose it’s unlikely because why would we need to to do a test in order to get this medication?

 

[dylemmaz]

@dylemmaz,

That being said, I wouldn't think that the test that Whitney had was a blood test. I’m thinking if he's able to write lenghty blog and Facebook posts, and lay up in bed a needle prick shouldn't crash him. I'm thinking something on the lines of a makeshift CPET or maybe he had to go into a clinic to get an MRI, but my guess is as good as anyone elses. Whatever it is I hope It's right and we can all rid this vile disease from our bodies soon.

i actually had similar suspicions. it didn’t make sense to me that a simple blood draw would lead him to a crash. my original suspicions were that it could have been some sort of exercise testing along the lines of what david systrom does. maybe measuring metabolic changes and prescribing medication accordingly?

but then again, whitney made it seem like this test would be very accessible, and invasive exercise testing is very inaccessible to most in the community. so i suppose its not that, and a blood prick leading to a crash would make more sense? i’m not so sure, though.

 

[dylemmaz]

@dylemmaz,
The other two drugs Suramin and SS-31 (not FDA approved) have been tried by 2-3 patients respectively, neither showed any benefit that placebo couldn't explain.

suramin seems like a viable possibility. ron said in a 2018 talk that suramin would be available by the end of that year in the usa (didn’t end up happening), but it’s very likely it has just recently been made available and the timeline was delayed. ron had also said in previous updates that he was working with labcorp and quest to set up some testing for cfs patients. in the same 2018 talk he said that he was making dna probes for all known trypanosomes and parasites. its possible that the suramin and testing are just becoming available at about the same time

 

[raghav]

come on Ron Davis ! We have had enough of the suspense. Out with it please.

 

[bensmith]

This

Hm. Wow.

i echo my concern for whitney too. Hope it helps. This situation often makes me cry when i think of others suffering. Its why i try and not think of all the others with the disease like meC I immediately start to feel vomitus. I very much hope whit is ok, gives me a lot of anxiety just thinking about him experimenting and pushing!

 

[max_yazhbin]

I took Copaxone for about three months and it did nothing. Other ppl here on PR and on IG didn’t have a response either. The only person I know is Rachel Riggs

Maybe suramin or SS-31, I have suramin from medkoo, haven't tested it yet because I am testing to see if I have aluminum poisoning which could be the source of my <dl succinate in my krebs cycle. If I get rid of the aluminum, maybe that will start things back up?

 

[max_yazhbin]

ron has recently said he’s been doing a meta analysis on all drugs that may work in a similar way to abilify, focusing on their impact on dopamine. so it’s plausible that this is the treatment he’s talking about. although i suppose it’s unlikely because why would we need to to do a test in order to get this medication?

I have had at least 10 treatments that worked really well for 2 weeks and yet I am unable to get in contact with Ron, ugh!

 

[Possibly James May]

but then again, whitney made it seem like this test would be very accessible, and invasive exercise testing is very inaccessible to most in the community. so i suppose its not that, and a blood prick leading to a crash would make more sense? i’m not so sure, though.

Kinda forgot a little detail, Whitney has a central venous catheter, which means they can draw blood fairly easily with no new needle pricks. Also, I’m sure they have some of his blood on reserve so they don’t have to draw blood when he’s really bad. Perhaps they are injecting him with a drug to induce some kind of stressor.

suramin seems like a viable possibility. ron said in a 2018 talk that suramin would be available by the end of that year in the usa (didn’t end up happening), but it’s very likely it has just recently been made available and the timeline was delayed. ron had also said in previous updates that he was working with labcorp and quest to set up some testing for cfs patients. in the same 2018 talk he said that he was making dna probes for all known trypanosomes and parasites. its possible that the suramin and testing are just becoming available at about the same time

Honestly, I’m at a loss on what the treatment might be, I doubt it will be Suramin though. Even though there’s a lab that will be manufacturing it soon, if not already, I highly doubt the FDA will clear it for ME/CFS without at least one really good phase III clinical trial. On a conservative timeline, it will take 3-5 years to complete a phase III, assuming funding is there from day one and theres no hiccup's. Also, without a decent paper published, it will be damn near impossible to get a doctor to prescribe it.