Hi Sandy,

I went to see Dr. K. in Tampa, Florida.

Basically, by "set" I mean a series of 3 infusions - 1 per day (4 hours of ketamine) for 3 days, escalating dose.

Dr. K. likes to do the infusions starting on Tuesday, then Wednesday & Thursday.

The first set in September I started out on 40 mg/hr, next day 60 mg/hr and last day 90 mg/hr. Everyone is different (some people he can get as high as 200 mg/hr). I don't need much to get me to the state he needs me to be at.

In October I started out at 60 mg/hr, next day 90 mg/hr and the following mostly 90 mg/hr and he did manage to get me up to 135 mg/hr (for about 10 minutes).

The staff and Dr. K are wonderful. I get extreme nasea even with the medication Zofran. I get hallucinations but nothing frightening (just a distorted view of reality - room looks bigger, different colored walls, foliage - that is not there). I simply do not like the loss of control and not being able to escape from this altered sense of reality.

We have not heard back from the insurance company yet (but I am hopeful).

I am also not well for 10-14 days after and my head is in a fog. Everyone is different and have different reactions. Both times I went, the other patients were pain free after the infusions - which I thought was really encouraging.

Some people feel the effects right away while others it takes longer. Usually, what they see is that people require fewer and fewer infusions as time goes on. He has great videos on his website which I found extremely helpful.

http://www.rsdfoundation.org/en/Medical_Synopsis.htm

They have seen success with the coma and now they want to see if they can accomplish the same thing with higher doses of infusions rather than undergo the risks of the coma. I was a candidate for the coma but wanted to try the 3day to see if it would work.

They have had good success with low dose and people with RSD in one limb.

It is a process that takes time. From what I understand, basically, our brains patterns have changed to a pain pattern and the ketamine (and exercise) is helping to get it back to a normal pattern. It can take months to years. Even some of the coma patients continue to improve years after the coma.

If you look at Shannon Stockers videos or Heather Kennedy's videos you can see the progression of their healing. It is not a straight line up.

On the flip side, some coma patients seem to wake up pain free and continue down that road (but they still get boosters for a period to try to keep them on that path). They have patients that are 4, 5, 6 years out and are still pain free!

I hope this answers your questions. Feel free to ask more, if you like.

There is hope! With God, all things are possible!

Irene

Hopefully, this did not post twice - having some difficulty with my internet connection.