mTor Inhibitor Rapamune Helps 5 ME/CFS Patients in Dallas

[MrTop]

Rodger

I doubt there is a single person on planet earth that knows 100% the mechanism of true ME. So it is impossible to say, whether it will make the serious subset worse or not. But as someone has has spent most if his life life in the Whitney Dafoe category, I think it is worth a shot. As you know this is not lumbago wr sre talking about here. I have a condution with more symptoms than a final stage Aids or cancer sufferer. Unless we move the goalposts and look at serious immune modulating treatments, I fear progress will never be made. Doctors do not even understand how Sorilimus works. It may have actions nobody is aware of as yet.

As for cyclophosphamide. Correct me if I'm wrong, I believe the Norweigans are in the middle of phase two trials. http://www.shoutoutaboutme.com/trea.../cyclophosphamide-trial-for-me-gets-underway/

The other reason, I wish to try it is that it had a dramatic affect to the positive on my sister who was suffering from life-threatening Vasculitis. She has been on a low dose for nearly 30 years and thus far has had little side-effects.

Something is seriously diseased wrong with our bodies and a cup of hot honey and lemon and a vitamin D tabletbis just not going to cut it. The lightning process is not going to work for me.

 

[rodgergrummidge]

Keeping track of those taking rapamycin...

XenForo - major response
eljefe19 - major response
made_lman / Dallas patient #1 - major response
Ken Lassen blog reader - major response

Dallas patient #2 - positive response of unknown degree
Dallas patient #3 - positive response of unknown degree
Dallas patient #4 - positive response of unknown degree
Dallas patient #5 - positive response of unknown degree

perovyscus - discontinued

nandixon - pending
Hip - pending

steve4andrea - no response
Montoya Reddit patient - no response
BadPack - no response

does anyone know who was the doctor treating the 5 people in Dallas with Rapamune. I have tried to track them down using google, reddit, PR and HR but cant find any details. I wanted to follow up. It sounds counter-intuitive, but maybe there is a possibility that it might work....

does anyone in this thread have any concrete details of the doctor, clinic or institute where the treatment was given?

@eljefe19 @nandixon @Hip @perovyscus @Jesse2233 @XenForo can you point me in the right direction?

cheers

Rodger

 

[nandixon]

@rodgergrummidge, I found the name of the Dallas doctor at one point, but can't remember it. He's an older gentleman, in his 70's, I believe. I would send a PM to Marcia (@made_lman) who was prescribed rapamycin by him to try to find out.

 

[MrTop]

@rodgergrummidge

I've been hunting for weeks to no avail.

 

[rodgergrummidge]

@rodgergrummidge, I found the name of the Dallas doctor at one point, but can't remember it. He's an older gentleman, in his 70's, I believe. I would send a PM to Marcia (@made_lman) who was prescribed rapamycin by him to try to find out.

much appreciated @nandixon

 

[Hip]

More about the incidence of diabetes in patients taking rapamycin (sirolimus):

I can't find any study looking at patients taking just rapamycin, but this study looks at the diabetes incidence in kidney transplant patients taking a combination of rapamycin with cyclosporine A.

They found that over roughly a 4.5 year period, in patients taking rapamycin with cyclosporine A, the diabetes incidence was 31.6%, whereas in kidney transplant patients taking cyclosporine A alone, the diabetes incidence was 10.4%.

So as a very crude calculation, we might subtract one percentage from the other in order to estimate what the incidence of diabetes would be in patients taking just rapamycin, and this works out at around 21%.

So as a ballpark figure, say 1 in 5 patients taking rapamycin for 5 years might be expected to develop diabetes.

(As mentioned earlier, taking rapamycin in an intermittent protocol, or co-administering metformin with rapamycin, may mitigate the risk of diabetes).



The study does not indicate the dose used, but here it says the rapamycin maintenance dose for kidney transplant patients is 2 mg to 5 mg per day.

 

[MrTop]

Hip

Like you, I will be cycling rapamycin, do will not be taking every day. With regular blood sugar testing we should have early warning signs.

Is type 1 or type 2 more prevelant amongst rapamycin users?

 

[Gondwanaland]

I guess I dont really understand the biological rationale for why a drug that suppresses the immune system and suppresses catabolic pathways for energy production would provide therapeutic benefit in CFS.

I believe the benefits are in suppressing the inflammatory reactions.

 

[MrTop]

I believe the benefits are in suppressing the inflammatory reactions.

This is the reason I am going to try rapamycin first. Having suffered severe ME for 36 years, I have probably tried about 60 or 70 medications and about the same in supplements. The only thing to remotely ease my symptoms id doxycycline. Period. Doxycycline is known modulate the expression of inflammatory mediators. This is not anecdotal. It is as proven as it is ever going to be.

Sirolimus is another antibiotic with known anti-inflammatory, immune suppressive and major gut altering properties. Maybe, just maybe it will be able to alleviate the symotoms of a subset of sufferers. This is my thinking.

 

[MrTop]

What is more after years of researching ME/CFS and Gulf War Syndrome, in my opinion doxycycline is the only treatment to consistently show rapid improvement in symptoms in a subset of patients. It is not a cure snd it will not get you out of s wheelchair, but it has been shown to reduce symptoms and it is not a placebo affect.

 

[Gondwanaland]

Doxycycline is known modulate the expression of inflammatory mediators.

It inhibits MMP-9.

 

[Hip]

Is type 1 or type 2 more prevelant amongst rapamycin users?

I read rapamycin can cause type 2; I am not sure if it can cause type 1 as well.


Another serious but fortunately rare risk from rapamycin is progressive multifocal leukoencephalopathy (PML), an often fatal brain infection caused by reactivation of the JC virus. PML is also a risk with rituximab. I could not find any figures on the incidence of PML in patients taking rapamycin, but for rituximab, PML is reckoned to occur in 1 out of every 30,000 treated patients. 1

 

[perrier]

Dont get me wrong, I would rather do without added long term health problems from heavy medication. Those of us who are severe have a very serious, soul destroying illness. No amount of vitamins or natural remedies will move the needle for us. This I know for sure. It is pointless me trying these types of solutions any more. We are just kidding ourselves.
We are not the worried well. We are seriously ill. You need s big hammer to knock a big nail in.

I am very moved, deeply so, by this post of yours.

 

[ErdemX]

Another serious but fortunately rare risk from rapamycin is progressive multifocal leukoencephalopathy (PML), an often fatal brain infection caused by reactivation of the JC virus. PML is also a risk with rituximab. I could not find any figures on the incidence of PML in patients taking rapamycin, but for rituximab, PML is reckoned to occur in 1 out of every 30,000 treated patients. 1

Actually a main concern of mine is trying Rapamune before trying Rituximab, in terms of increasing the risk of PML.

If I remember correctly, the PML risk of Rituximab in MS patients are higher, probably because they have been using stronger immune suppressing agents for a long time before trying Rituximab. While 1/30.000 or 1/20.000 risk is very low (I vaguely remember the second number from RA patients), what if trying Rapamune for a period of time and then taking Rituximab after a while increases the risk a lot?

Meanwhile, any of us who thinks about giving Rapamune a chance would probably try the drug maximum for 3 months or so. I don't think this would be a serious risk. But if the person gets benefit from it, and decides to stay on the drug to maintain the improvement, then a long term usage can be evaluated again. There are people who just take the drug in order to extend their lifespan or stay healthier and most of the side effects data in humans is collected from already very sick organ transplant patients who take other immune suppressing drugs for long time.

 

[Hip]

Meanwhile, any of us who thinks about giving Rapamune a chance would probably try the drug maximum for 3 months or so.

Yes, I think you'd be very unlucky if rapamycin triggered type 2 diabetes in your initial 3 month trial, especially if you are also taking metformin and using the intermittent rapamycin protocol detailed in this post, which I intent to do. I think (or at least hope) that metformin and intermittent rapamycin should significantly lower (if not eliminate) the diabetes risk, even for long terms users of rapamycin.

 

[Tunguska]

This is the reason I am going to try rapamycin first. Having suffered severe ME for 36 years, I have probably tried about 60 or 70 medications and about the same in supplements. The only thing to remotely ease my symptoms id doxycycline. Period. Doxycycline is known modulate the expression of inflammatory mediators. This is not anecdotal. It is as proven as it is ever going to be.

Sirolimus is another antibiotic with known anti-inflammatory, immune suppressive and major gut altering properties. Maybe, just maybe it will be able to alleviate the symotoms of a subset of sufferers. This is my thinking.

Hi there I'm just curious, purely for my own information (not a suggestion), did you also try azithromycin?

 

[MrTop]

Yes, I have taken azithrompycin using the pulsing method at one 500 mg dose per day, for 3 consecutive days. It was too much for me to tolerate and after a while I had to reduce to 250. I would feel rough on the three pulsing days and immeadeately feel better the following 4 days. I feel that in my case the side effects from azi were making me rough.
I dont buy into the herxheimer theory. There is no credible evidence it exists and what there is, is limited and dated.

I

 

[Steve4Andrea]

Here is an update on our experiences with Rapamune- We have been using the anti-viral Arbidol and tried Rarpamune (.5 mg. every other day for 6 weeks) as an add-on to assist in the anti-viral activity.

Several weeks ago Andrea experienced an unprovoked crash, we consider them provoked when triggered by high stress (emotional or physical) and/or periods of physical activity and neither of those triggers were present. Our standard protocol is to stop treatments until she calms down to a normal misery level and then resume, we stopped the Arbidol right away but not the Rapamune because it has a long half life so stopping takes awhile to have an effect. After 3 days without Arbidol and no improvement we stopped the Rapamune also, 4-5 days later she returned to normal. I can't say for certain that the Rapamune was the cause or contributed to the crash but since the medical literature on using Rapamune in conjunction with an anti-viral is vague I've decided to stop the Rapamune permanently.

We are scheduled to have blood work done in October and were going to be checking glucose and cholesterol, I don't know if the PCP will still want those tests now that we are off Rapamune. It may be significant to note that Andrea has an active intra-muscular infection of CVB4 so her response may differ from other people with CFS.

Our earlier trial of Rapamune was at a higher daily dose (2 mg.) with grapefruit juice, after about a week of use she began to form mouth ulcers and we stopped the Rarpamune at that dose. The lower dose did not trigger any side effects that we noticed

 

[MrTop]

Hi

Is it possible for some kind soul to contact Marcia Adelman for s update in her progress or lack of it with Rapamune? She seemed to be doing remarkably well, but that was 6 months ago.

Marcia Adelman

 

[Jesse2233]

Good luck @MrTop let is know your results