Dr. Ronald W. Davis Answers Patient Questions: Q and A follow-up to 2/21/17 Research Update

[necessary8]

I also had some abx for acne before before my illness started. I think it was tetracycline, but I'm not sure.

 

[valentinelynx]

I don't think ketamine was one of Dr. Goldstein's cures, just that he found it effective for reducing symptoms and allowing people to function.

I disagree. It "cured" me completely for one week. All symptoms gone. Able to exercise without consequence. It was wonderful. However, it did not last past 1 week. Attempts to regain the benefit with more ketamine did not work. This, I believe, has been noted many time with this disease: a drug, or supplement, will help tremendously, or completely, initially, but eventually the disease reasserts itself.

 

[lansbergen]

I disagree. It "cured" me completely for one week. All symptoms gone. Able to exercise without consequence. It was wonderful. However, it did not last past 1 week. Attempts to regain the benefit with more ketamine did not work. This, I believe, has been noted many time with this disease: a drug, or supplement, will help tremendously, or completely, initially, but eventually the disease reasserts itself.

Then you were not cured

 

[Jill]

I disagree. It "cured" me completely for one week. All symptoms gone. Able to exercise without consequence. It was wonderful. However, it did not last past 1 week. Attempts to regain the benefit with more ketamine did not work. This, I believe, has been noted many time with this disease: a drug, or supplement, will help tremendously, or completely, initially, but eventually the disease reasserts itself.

Yes exactly my experience also . I would call it 'cured'. Function came back, just something to do with the illness re takes hold. Semantics aren't worth debating. What's worth debating is what ketamine does and why it helps and why it stops helping. I've had so many things do the same thing - surgery, neuronitin. Both those weren't placebo effect - surgery caused complete remission for 3 1/2 months, neurontin for 6 weeks .

 

[AndyPR]

This is what worries me about the idea of 'turning the switch back on'...........what if our bodies(whatever causes ME) just turns it off again?
Sorry, trying to stay positive.......

Well, probably a woeful analogy but I see it as the on/off switch being "spring-loaded" due to ME. Sometimes current treatments/supplements/whatever will be temporarily strong enough to counteract the spring, which then allows the body to do a proper reset and back to on, but over time the effect wears off and the spring is able to draw the switch back into the off position. The goal is obviously to find a way to disable that spring mechanism, once you do that, on is on.

 

[Jesse2233]

@Jill @valentinelynx what was your ketamine dosage and route of administration?

And @valentinelynx what kind of surgery did you have?

 

[trishrhymes]

@valentinelynx what kind of surgery did you have?[/QUOTE]

I imagine it may have been a case of what kind of anaesthetic and other drugs were administered, rather than the specific type of surgery???

 

[Diwi9]

@valentinelynx - For me, a cure would be sustained remission, but I agree with your use of the term to the extent that Dr. Goldstein did call his treatments "cures." I believe that Goldstein reported this same experience with a number of compounds, where people experienced a complete remission. People on PR have questioned where all of his "cured" patients have gone. Were they really cured, or was it temporary remission? There is so much to learn from your experience and others.

Goldstein was really onto something and I wish we had a plethora of researchers out there figuring this out. I'm reading one of his books in bits and pieces. Quite a character, but it takes an out-of-the-box thinker to understand ME/CFS, which is exactly the sort of scientist Ron Davis is, and has been recruiting for OMF.

Why don't we have more help with novel treatments? Just think that Goldstein was embattled with the CA Medical Board for nine years over his medical treatments. Dr. Sarah Myhill has had a similar experience in the UK. I know Lyme specialists in the US have too.

On a side - I have a friend with lupus. Her doctor permits her to have one IV of ketamine per year. Like you, she felt normal for one week.

 

[valentinelynx]

@Jill @valentinelynx what was your ketamine dosage and route of administration?

And @valentinelynx what kind of surgery did you have?

At Goldstein's office: 25 mg IV drip in (I can't remember the exact amount) either 500 ml or 1000 ml of normal saline over an hour. Subsequent doses at home were IM, 25-37 mg.

I did not have any "cure response" to surgery: I think you are confusing me with @Jill? I have had some procedures under anesthesia, but they did not have any notable effect on my ME/CFS. I'm pretty sure no ketamine has ever been used for my anesthesia.

 

[Jill]

A friend from nz attended Goldstein back in the 90s and brought back the gels of the test drugs - ketamine being one. So that was just rubbing a gel into the inside wrist. I wish it could have been iv'd frankly. I don't know what they use in anesthethesia - perhaps something similar . The best surgery I had was actually cosmetic - they inflated a silver bag around my legs and 'oh my god' did that take away the pain combined with the anesthic . When they deflated it I began feeling worse again . I wanted to buy one and still do if anyone knows where you can buy them .
So, trying ketamine I suspect will be hard. I know pain clinics have it but don't know what indications they use it for. I'm going to suggest they try it on my partner shortly

 

[PatJ]

they inflated a silver bag around my legs and 'oh my god' did that take away the pain combined with the anesthic . When they deflated it I began feeling worse again . I wanted to buy one and still do if anyone knows where you can buy them .

Those sound like shock trousers. A military g-suit works in a similar way. They're both compression garments that increase blood pressure and allow more blood to remain in the upper body.

 

[hmnr asg]

I like to second the experience with ketamine. I have mentioned this in a separate thread.
I had a ketamine infusion and for two days i thought i was cured. I had zero symptoms! it was like being my old self. Of course it wore off.
I am hoping to get a second infusion, but these infusions arnt cheap here in california and they are not covered by insurance as far as i know.

 

[Quemist]

I used accutane around the time my illness began.

I have a friend with Celiac say the same thing.

 

[Manganus]

In my own case, I have partial remissions between June and July (I live north of the equator), almost every year. I think that these temporary improvements might be linked to seasonal variations observed in the immune system (see this comment by Antony Komaroff or this study). I would be glad to offer my body fluids during and after these temporary remissions!

In the very beginning of my ...sick-career, I felt improvements from sleeping at my balcony, living at the 58:th latitude, almost as far north as Anchorage. I couldn't decide which factor was the most important, but later I've come to believe it was the light from the sky. At that latitude night is eight hours long in early August, but even in October, when it starts to get chilly in the mornings, the sky is blue at seven o'clock.

Later in that career, I followed up with a pair of journeys to the sun each winter, which were of tremendous help for me. I think all symptoms improved.

Later than that, I started to give myself "natural day light therapy", inspired by treatment of depression - then my chief diagnos.

And on top of that, when I could no longer work, I moved out to the country side, helping a friend with full time occupation and a moon shine farm. Eventhough I was in a pretty bad shape, and needed to rest a lot, I was outdoors many hours a day. Again I felt the improvement caused by day light.

This encouraged me to move much further south, to the 27th latitude, comparable with Florida or the Sunshine Coast in Australia.
Here I stay out of the sun, and brain functions suffer during the warmer months. But I do get a lot of exposure to natural light. And I have improved in many ways, though in other ways, my condition has worsened.

And although this is only a singular patient's anecdote, I can assure anyone who wants to listen to me, that day light does wonders with me. The mecanism, however, I do not know. It may have with vitamin D to do, or maybe with the eyes
...or maybe some internal organ like the hypothalamus has an ability of its own to perceive day light?

 

[Jill]

In the very beginning of my ...sick-career, I felt improvements from sleeping at my balcony, living at the 58:th latitude, almost as far north as Anchorage. I couldn't decide which factor was the most important, but later I've come to believe it was the light from the sky. At that latitude night is eight hours long in early August, but even in October, when it starts to get chilly in the mornings, the sky is blue at seven o'clock.

Later in that career, I followed up with a pair of journeys to the sun each winter, which were of tremendous help for me. I think all symptoms improved.

Later than that, I started to give myself "natural day light therapy", inspired by treatment of depression - then my chief diagnos.

And on top of that, when I could no longer work, I moved out to the country side, helping a friend with full time occupation and a moon shine farm. Eventhough I was in a pretty bad shape, and needed to rest a lot, I was outdoors many hours a day. Again I felt the improvement caused by day light.

This encouraged me to move much further south, to the 27th latitude, comparable with Florida or the Sunshine Coast in Australia.
Here I stay out of the sun, and brain functions suffer during the warmer months. But I do get a lot of exposure to natural light. And I have improved in many ways, though in other ways, my condition has worsened.

And although this is only a singular patient's anecdote, I can assure anyone who wants to listen to me, that day light does wonders with me. The mecanism, however, I do not know. It may have with vitamin D to do, or maybe with the eyes
...or maybe some internal organ like the hypothalamus has an ability of its own to perceive day light?

Like you I improve over summer - it's driven me crazy over the years . I just want to follow the sun around . I've now bought a light box to see if that helps. The evidence in depression is now good, but I'm thinking like the nature article said that decline is due to more pro inflammatory cytokines in the cold of winter. I found that article fascinating . I also have patella arthritis and that worsens over winter. The orthopaedic even brought it up ( not that there's much treatment but he acknowledged the seasonal variation ) . So is it daylight or cold ???? I'm doing my 1/2 hr under my lamp every morning it ( started yday)

 

[Manganus]

So is it daylight or cold ????

Honestly, I'm not quite sure. But when I moved out to the country side (after having had to quit my last employment), I came from a rather warm life, living in a modern apartment (if 20'C is "warm") and working indoors. Then I started to be outside many hours a day, even when it was minus 20'C. My dwelling often kept 14'C, unless I'd lit fire in the stove. (I used an electrical bed-warmer and many layers of clothes.)

If the temperature had been crucial, I guess my health would have deteriorated drastically.

Of course there may be another reason hidden somewhere, maybe the "natural course" of the disease. But it seems more likely that the light is the reason, I think. In my case, at least.

 

[Jill]

Honestly, I'm not quite sure. But when I moved out to the country side (after having had to quit my last employment), I came from a rather warm life, living in a modern apartment (if 20'C is "warm") and working indoors. Then I started to be outside many hours a day, even when it was minus 20'C. My dwelling often kept 14'C, unless I'd lit fire in the stove. (I used an electrical bed-warmer and many layers of clothes.)

If the temperature had been crucial, I guess my health would have deteriorated drastically.

Of course there may be another reason hidden somewhere, maybe the "natural course" of the disease. But it seems more likely that the light is the reason, I think. In my case, at least.

That's really interesting . I live in Auckland nz and don't have central heating and feel the cold badly . But we have wet cold going down to say only 5celcius. I'm sure dry would be better. I'll know after this winter whether my lamp helps , but even then we'll be stick with why. Desperately think my body type would do better in Queensland . Really interesting to see you have done better. The illness never really leaves me I just get less viral over summer .

 

[MonkeyMan]

I just wanted to add my name to the list of patients whose ME/CFS started when I was taking antibiotics. I'd received lots of antibiotics as a kid for infections (strep throat) and surgeries, and then I developed bad acne as a teen, which in retrospect I realize was due to the imbalanced gut flora that all those antibiotics had brought about. So what did, in its infinite wisdom, the medical community suggest I do to combat the acne? Why, take tetracycline, of course!! And that was it. I was all of 18, I began dutifully taking tetracycline, and I was reduced to rubble. Decades have now passed, and every day is still a struggle with this accursed condition. Ron Davis and his wife Janet give me hope that maybe, soon, I will find a way out of this hell.

 

[NelliePledge]

They need 5$ million a year for several years.

Patient donations aren't going to be enough. And the NIH isn't providing enough funding. What should we do? Lobby for specific funding for this project? Go begging to billionaire philantropists?

I don't know much about these foundations but surely it's worth trying to get some Gates/Buffett funding and Dr Davis has both scientific credibility and his sons story to show how much the cash is needed.

 

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