Absolutely wonderful! Great news.

God is good!

I just recently received a list of ketamine treatment centers in the US from Jim Broatch of the RSDSA. I would be happy to mail you a copy of the list, please feel free to send me a PM.

Sandy

The God who created us strengthens us. For some of us God's will for our life is remission for others he has different plans. Whatever his will is he will also provide us what we need to manage our life. There are sciputures in the Bible to support these ideas. I'm just too foggy brained to think of them or look them up. If you want to know where they are PM me and I will look them up.
God is amazing and will meet our needs if we ask him. If you don't have a personal relationship with our GREAT GOD ask me or attend a church close to you.
God Bless,
Sherrie

Please, if you could email me that list I would so appreciate it.

This is the link in FB:

http://www.facebook.com/group.php?v=...70&topic=11491

I sincerely hope I am not making any administrative errors by posting the link here - it is Jim Broatch's list followed by a discussion of editorial corrections to the list.

Good luck. Sandy

Hope you guys are all doing well and had a wonderful Thanksgiving!

Well, I thought I would give you guys an update on my ketamine infusions. I had the 3 day 4-hour escalating dose in September, then another set in October (at a little higher dose) and I am looking to go back in December (next week).

Reminder: I have full body RSD. I won't go into too much detail but try to give an overview.

Sept. Infusions - I thought it had very little effect right after the infusions. But as the week went on, I noticed less areas were in pain and I had some days of lower pain. Same thing in week 2. By week 3, the pain had returned mostly in my left side from head to toe (very strong) and by week 4 I was back where I started - full body.

I quickly went for a 2nd set of infusions.

Oct. - same thing - did not feel like it did much but as time went on I had pain in fewer places. It hardly felt it in my hips for about 3 weeks (which was very strange because that is where I feel it predominently). I had some really low pain days and it is coming back on the left side (slowly) but not as strong as before and intermittently coming back on the right side. I had 5 days of low pain last week (like a holiday)

So I had the 1st set of infusions, then 4 weeks later I had the 2nd set and 9 weeks later I hope to have the 3rd set (hopefully, it will be even longer before the next one and hopefully less pain).

I am not without pain but I have had some low pain days. It is a slow process (and the ketamine is no picnic) but I hope to see more improvements to come.

Some weeks after the 2nd set of infusions I had one night where I slept 8 hours and a couple of nights of 6.5 hours! I usually average 4-5 hours of sleep.

Some people have immediate pain relief after the infusions (which is really awesome to see - can you imagine, all of a sudden being pain free).

For others, like myself, it is a slow process. Our brains are trying to change from the pain pattern back to normal. Have you guys see the studies they have done one brain patterns and functional MRI's? Quite interesting! If the pain goes away, the brain can re-wire back to a normal state (yes, it is reversible). Very interesting. They have seen this in people with CRPS and phantom limb pain.

With God, all things are possible!

Hi -

Where did you go? And what was the protocol? When you say "set," what do you mean by that? Thanks so much. (Don't mean to pry, but I am looking into this myself, and I'm very interested in what other people have tried)

Also, did your insurance company pay for all or part of it?

XOXOX Sandy

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.

I'm so happy that you found some relief from the relentless pain of RSD. I'm very curious about your diagnosis. How did your doctor(s) determine that you had "full body" RSD?

I still have one piece of metal left in the bones of my foot that I think is the culprit for all my pain woes but no one can tell me why I have pain else where.

I'd apprecaite any further insight you could share with me. I hope you are still doing well.

MsL

MsL

This is the 3rd time I have tried to post this reply. Hopefully, I has not posted 3 times.

I had full body nerve pain (head to toe), shiny skin on my hand and changes in color on my left foot, sweating more predominently on the left side, more hair growth on one left side, temperature difference. I discussed it with my neurosurgeon who thought it might be CRPS. That is when I decided it was time to see Dr. K who confirmed the diagnosis (you don't have to have all the signs - but the nerve pain in the key factor).

Dr. K has the new criteria on his website as to how it is diagnosed (most websites have old information - you know the 3 stages? - old information). He also has videos of patients and their rehabilitation. Very informative! Everyone presents differently. This is particularly helpful for doctors who do not know what this is.

I am sorry about your situation. Where is your pain?

My neurosurgeon said the pain was referred pain - like when someone is having a heart attack but they feel pain in their left arm. They have studies on this. I think one recently about women who had C-sections and would have pain in their feet or teeth - other places other than the abdomen.

They think that the brain may be remapping because of the pain but the good news is they have seen it can be reversed. Oxford Journals had an interesting article on it. They can see the change using a functional MRI of the brain.

Just curious as to why you think the metal is an issue? You know your body the best. Will removing the metal help? I don't know.

I know it is hard to make a decision.

For me, I had cut my finger and I got full body pain, I had surgery on that same nerve and the pain went up then down (9 months later), PT massaged the nerve on the finger due to the scar and the pain went up, had a second surgery on that same nerve and the pain went up again. To me, this is a clear indicator that this nerve plays a role in this problem but it is not the only piece of the puzzle.

It may have been better had I had the surgeries under constant ketamine infusion.

Keep us informed as to what you decide. There is always hope!

By the way, thank you for asking, I am still doing better than I was before the infusions.

I pray you will be feeling better soon.

IT