Thank you all
I guess cleaning out the garbage disposal IS a major accomplishment Sue.
I don't recall feeling up to that challenge in my immediate or not so immediate past .
It has been 2 or 3 days since I stopped taking the ketamine.The first day , I felt kind of crappy.
I certainly don't feel as bad RSD wise as I did before the ketamine .I am not in a flare .
That was the major purpose of this procedure . I was in the worst flare-up I have ever been in .

I now have a sense of not being as "perfect" as I felt while on the medication.
My limbs had a more sturdy feel about them .They already feel a bit more fragile and tender .
I see my PM doc on Friday and I am going to bring up a low dose of ketamine as part of my med regimen for bedtime .It does have strange side effects so I couldn't take it in the amounts I was on before or I would have to stay home all day.

11 months until I hit Germany and I am really looking forward to it!!!!!!
This stuff has great potential for all of us so I am very excited.If you have a chance to try it -PLEASE DO!!!In oral form it is very inexpensive.

Peace

GnP

GnP,

Can you give me some specific information about the doctor's protocol with the ketamine? I'm just wondering if this could be something that I could try. You had mentioned that you weren't able to function for the first week. Were you able to drive, etc? What was the duration of the medication and such?

I had tried to schedule an appt at Mayo Clinic but was denied. I guess my RSD isn't bad enough...

Any help you could give me would be very helpful.

Thank you!

Hi GnP,

Is this ketamine procedure something that you do before you go to Germany?
Is the Germany process more ketamine for a longer duration?

I hope you are still feeling good. And, yes, cleaning out a garbage disposal is a major accomplishment when you haven't been able to use your hand for awhile. Do you still have much strength? I lost alot but am very happy to just be able to use my hand.

Linmarie

Hey DwT and Lin Marie

I think somewhere in this thread I went over the protocol I just went through but I can cover it again.It is not in place of the going to Germany next year ,I just had to do something to get my flare under control!

On another note this is my my personal opinion of the Mayo.I have heard the same from several others- If you have cancer - get your butt to the Mayo .Nerve disorders run the other way - it's not their thing- they are light years behind.
I had a horrible time when I went to the Mayo. If you want more info PM me

Back to ketamine -This current protocol began with a SGB ( which is optional) followed by a 4 hour ketamine infusion a la Scwatzman protocol which is 20 mg /hr for 4 hr total 80 mg. It is what he calls his boosters .
This was followed by an at home oral ketamine regimen of 2 days at 40 mgs and then up to 60 mg a day .I think I was on it orally for a total of 12 days .
The oral dose is based on what you can handle .
I am 5'5 and weigh 105 .I would assume a larger person might be able to handle more .
However I was very highly motivated to feel better and I didn't care if I felt poorly .
This was what I wanted to do for me so maybe this was a good dose.
I was given ativan as a neuro protective agent .There are studies that prove that ketamine works better with a neuroprotective agent not just as an adjunct therapy to stop the hallucinations(at this dose hallucinations are unlikey but you do feel odd or other worldly).

Yes DwT I did feel rather odd the first week. You don't build up a tolerance to ketamine as it has a short half life and leaves the body very quickly (thanks T) but you do grow accustomed to the feeling.
I don't think I would be able to exist on that high a dose but I am going to discuss with my PM doc on Friday adding a lower dose to my med protocol-
maybe 10 mg AM and 20 mg PM . I notice the difference already in 3 days without.


Any highly motivated pain management doctor can get this going in their own area .
All that is needed in the outpatient setting is a RN to oversee the infusion of ketamine which is available in any hospital setting as it is an anaesthesia .
Oral ketamine is made in a compound pharmacy and is very inexpensive ( which is probably why it is taking so long for all of us to get it )


Please talk to your doctors about this .It is not rocket science and it works.
It can be made available to you if you make your doctor make it available.

Germany is next year
I get induced into a coma for 5 days and get massive doses of ketamine - way to much too handle while awake .
The goal is to reboot the computer.
When I wake up my brain will be working the way it used to - no messages of pain where there are no injuries

When I saw Dr, Schwartzman he told me I could do his wide awake coma treatment and I could have a 50% chance at a 50% chance of a reduction of symptoms.
With the full on coma treatment I have more than 50% chance at a CURE.

I like those odds .

The decision is much more complex than a simple matter of math but I have decided that the coma dose is the best option for me.
I believe I went over it all in my thread on " what Dr.S said ;trip to Philly and denial over" or something along those lines a few pages back.

Peace

GnP

I saw my PM doc and asked for oral ketamine as part of my meds protocol.
You know you have a great doc when he is receptive to any new ideas.

He told me that as of right now there are not enough published studies on the long term use of ketamine for him to feel comfortable treating me that way. As it is very toxic to the liver ,he would prefer that I only use it on an emergency basis for really bad flares( he will be happy to write the script) then as part of my regular med protocol.
As soon as more positive research is published that long term use of the drug is safe, he would write the prescription,but for now it is on an emergency basis .Good doc - cares about my liver.I do too
He did however call the compound pharmacy and have them make a topical ketamine cream for me right away .It is a 2% ketamine gel.It does give some relief to the burning pain - an option I can live with for now.

So that is it from the ketamine front for now.

I hope this information has been helpful to at least one other person out there.
I think it is really important that when any of us get to try new treatment options that we share them with others so that we are all at the forefront of groundbreaking news and treatment in the fight against RSD
That way we have more choices available to us
when looking at whats next for us in our in our approach to this disease .

Good Luck to all

GnP

Hi GnP,

The biggest fear that they have with Ketamine P/M Docs or Anesthesiologists is that your throat could close with Ketamine. Because you are not monitored.

Their 2nd, maybe some their first is being sued. This is why in the States they are more cautious. Much Love, Roz xxx

Hey Roz and all

I think it would be worthwhile to read this wikipedia article on ketamine

http://en.wikipedia.org/wiki/Ketamine

Ketamine is the safest and least restrictive of any sort of drugs in this class to the throat, nor is it prone to promote any breathing difficulties
The only reason my PM doc would not give it to me ( I do not speak for other PM docs ) is because of it's toxicity to the liver.

I would hate to end a very informative thread with questionable information.
it goes against all the information I have been told,
read or researched .

Roz hon - if you can find me some fact based evidence to back this up I would be happy to read it .OK

Much love and peace

GnP