Hello everyone,
I am not too good at posting my own threads. I am going to try to get better. It's easier to give support for me than ask for it. A personality quirk that bites me in the rear often and keeps me from more fully contributing to the board.
I broke my toe a couple of days before Christmas. My father-in-law passed away requiring a road trip in early January. I have also over the past few months moved my business five minutes from my house, which I hope will pay off in the long run, but for now it has been a lot of work and increased my stress level a lot! Anyway, my physical condition has suffered. Nothing dramatic at this point just increased pain, burning, swelling and a strange burning sensation in my other foot (this is hopefully just from over use.)
After much thought, I have decided to get a ketamine booster. I don't think this MD's protocol is ideal or that he is entirely the right doc, but I feel like I need to do something soon. I've waited over a month thinking it was just a flare and now I'm getting concerned.
I would appreciate after a some advise from those of you that take LDN. This is the Doc the prescribes mine and I may want to ask for adjustment on Monday. What specific symptoms have you noticed a difference with the LDN? I started on LDN 3 weeks after a 3 day ketamine infusion because I though the infusion hadn't done enough. Not so sure now what helped the most or if it was a combo. Any of you that have has ketamine, what symptoms did it help you with. I have read the research, but I want to hear what people have experienced if you all would be so kind as to share.
One more thing, can anyone explain how to respond to a PM. I am clicking everywhere and ending up in all the wrong places. Also, please forgive the excessive use of icons right now. I have just rediscovered how to use them and am having fun with them.

I appreciate the kindness, compassion and wisdom of the people on this board.
~mac (OK that's enough)

Oh Gosh, you are holding back on asking for support if you broke your toe and didn't mention it. You rascal! No wonder you are having more pain. And moving your business is a big deal. I am sure you have been completely overdoing it. Five minutes from home sounds great though.

Okay so you are 7 weeks out from breaking your toe...at 6 weeks fractures have finished laying down bone and then start dissolving whatever was extra. This is normal but can go into overdrive. That's why my son was to have an x-ray at 6 weeks to make sure it didn't overcompensate. If you need a re-check x-ray get one. They run under $75 most places. FYI a degree of swelling and inflammation at this point is still normal. We just don't tolerate that kind of thing well do we?

I think a booster right now sounds great. My ketamine was cumulative. It has helped with burning pain, deep aching pain and I believe swelling. Sorry for TMI but I used to have to pee like you wouldn't believe after infusions and now I typically don't have to. I read that ketamine helps with neurogenic edema and a prolonged diuresis is not uncommon.

I am not on LDN (but interested) but from what I understand it can take 6-9 months to make a difference at least according to Dr. Chopra. I don't know if its impact would be great enough at 3 weeks to make a judgement. It may be time to go up. I think the max is 4.5 mg but am not a 100% on that.

On mirror pain...I had so much pain in the beginning that I felt it on the other side. This is a documented phenomenon with intense pain of multiple kinds. Mine went away as I improved and I don't have spread. I also had compensatory pain in the other foot from just having to put all my weight on it. This felt different than the mirror pain. Only you can judge. I'm sure your good foot is asking "Why me?" if you are having to put more weight than normal on it.

Hang in there Mama Mac. I am sending extra healing love and will be thinking of you Monday.


If you scroll past your PM there should be a quick reply box underneath where you can just type and hit submit.
and Hee! I love icons too!

Oh Mac! You should let us know what is going on a little more often. I really shouldn't talk myself, as I have been a little guilty of that myself lately. What a tough winter for you so far. Moving is no fun, whether it's home or business, and to do it with a broken toe on top of doing it with CRPS does not sound like much fun. Then loosing a family member as well!!!

I have no experience with LDN nor ketamine, but I wanted to wish you well on Monday. I will be thinking of you.

If you know who you want to send a PM to, click on their name to go to their profile page. Directly under their name is a little arrow that says send message. It gives the option to send a visitor message or a PM. Make sure you put a title on the PM. It took me forever to realize that my messages were not going through, and than a bit of frustration after that to figure out that a message title had to be entered. I hope that helps.

Sending healing hugs. I hope all goes well come Monday.

Mac! You Rawk Woman, absolutely Rawk. I just want you to know how much we respect you. You are so very supportive and helpful to all of us. I hope we can only return to you at least a portion of as much as you contribute to us. Have a great rest of your day!!



-Spike-

Hi mama mac,

Here is the info from the FAQ regarding Private Messages.
FAQ - Private Messages

Hope that helps. If not let us know.
take care there.

I really hope that a booster helps you out...you've had a lot going on it sounds like and I hope you get some relief soon. Take care of yourself and don't feel bad asking for support...you know we are all here for you. We all have rough times and days and sometimes it helps me a lot just to share with people who get it because I really believe that people who don 't have this condition can never fully understand. I'm very happy my family can't understand in that sense...and sorry that you all can...but it does help to get advice and support from my friends here. Hugs to you and keep us posted how you are doing.

I believe LDN is a miracle. I had to stop taking it due to medical procedures and I am suffering for it. I cannot wait to start it again.

Based on everything I have read "low and slow" is the key to success. I started low and increased a bit week by week until I reached 4.5. I also took alpha lipoic acid and gluthione. LDN seems to work best in combination with supplements, according to GotEndorphins, a FB site. My response was fairly rapid, but this is not typical, as mentioned in a previous post it can take up to a year to see results, plus there is the issue of potency. If it is compounded you don't know if you are getting the full dose or any LDN for that matter. If you can, ask for the 50mg pill and mix and it yourself with distilled water. It is easy to do and gives you the best control.

Hi Mama Mac,

I am on LDN (temp off for surgery & on pain meds now). I love it. It took 5 weeks for me to work and I know it can take months for it to really work. You start off slow 1.5 and work up. I was up to 3.0-4.5 day taking 2 pills in morning and 1 at night. It honestly got rid of a lot of the symptoms for me, especially in the mornings (that's why I moved my dose to twice daily to spread out the relief).

The burning pain was the biggest change. I can now get up in the morning and get to the bathroom without crawling. Another perk is I don't get sick anymore. Everyone else int he office has colds, sinus infections and I have stayed healthy (well other than the CRPS).

The ketamine infusion also reduced all the symptoms. I think together the LDN and Ketamine are helpful and I can't wait to get off these pain killers so I can get back on.

Good luck to you.

Hello all!
I am checked in to the hotel now and wanted to thank all of you for your information and well wishes. I actually drove myself almost two hours. It wasn't too bad because I was able to use the cruise control most of the way. I'm feeling rather independent right now. I haven't done anything like this since the accident. I am resting and drinking lots of fluids.

Little Paw, thanks for the info. After the 3 infusions back in October, a few weeks later the burning was reduced and the swelling was almost gone. The effects rather snuck up on me after I thought it was a failure. The crunching pain in my ankle continued (and still does) so I started the Naltrexone @ 2mg. The burning was gone within about 3 weeks of starting the Naltrexone. I am sure my toe has healed. It was not a displace fracture and it started feeling better a few weeks ago, but the CRPS did not seem to settle. Thanks for the info on mirror pain I felt much better reading that!

Inspire, after what you said about the burning pain and the Naltrexone and the Ketamine maybe it was a combination?????? What do you think it is with not getting sick anymore? So far so good with me this winter too.

Bio, thanks for the low and slow info. I'll keep that in mind when I talk with him.

Catra and Alaina, thanks for the kind words of support.

Spike, your a mess!!!!!!! Thanks!

Lara and everyone else that gave info on the PM's it is appreciated.

Again thank you all so much! I'll write as soon as I'm able. Wishing each of you a low pain day, heck make it week! ~mac

I will be thinking of you in hopes all goes well tomorrow. Let us know how things go.