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Posted 1/19/2021 6:18 AM (GMT -7)
First infusion today! will report back on any effects, good or bad. Apparently it can take 6 infusions to have a neuro-plastic effects. I'm hoping it can modulate this "gain of function hyperexcitability" (i.e. buzzing) i feel in my nerves.
Posted 1/19/2021 7:02 AM (GMT -7)
I only know it from 25 years ago as a recreational drug taken orally (some used to say "cat tranquilizer").

I assume it's different as an infusion, probably much lower dose too.. can you give a short run down on what led you to it as a treatment option?
Posted 1/19/2021 7:20 AM (GMT -7)
Sure pots.

Basically I had been noticing that even as my numbess and pain was getting better, that I’d still get this buzzing sensation. I started to speculate that this sensation was almost separate from the pain. It almost feels like my nerves arr hyper excited, kinda like the glutamate induced headaches I would get. Not everyone w this nerve damage gets this either, I’d guess around 20%. So after doing some research, I found evidence that the sodium channel receptors, specially the nmda ones, can get hyper excited after an injury and start firing off glutamate for no reason. It’s called “gain of function hyperexcitabilty”. This happens in RSD/CRPS as well, what if this is a form of that. The way to turn this off is with an NMDA antagonist. Ketamine is the most accessible one. So I set up a call w a pain management dr, and he said that the buzzing sensation was likely just as I described, but coming from the dorsal horn of the spinal cord, which is why it’s propagating down the legs as well. Lots of lymies are familiar with this buzzing of the extremities.

Ketamine is also known to be anti-inflammatory and great for pain in general, so I figure even if it doesn’t have any long term neuro-protective effects for me, at the very least I’ll feel better for a short while. They are also going to infuse magnesium and b12 with the shot, covered by insurance

Post Edited (dcd2103) : 1/19/2021 5:13:02 PM (GMT-7)

Posted 1/19/2021 8:06 AM (GMT -7)
I was given it once by a very smiley little bald-headed guy at an Orb concert in London circa 1998 - felt like I was unable to move for hours then when I did finally get myself to move it was like walking in treacle - very strange - but it was calming mildly euphoric and not entirely unpleasant smile
Posted 1/19/2021 8:11 AM (GMT -7)
I thought your keto diet was helping your gut mobility and sibo, thus you were in less pain ......just recently?

Ive never heard of Ketamine lol, and whats RSD/CRPS?

You seem to have very good luck finding Drs who know some "not so known things" and procedures. When I did that in the past all I got was dead ends and road blocks so I gave up.

Also noticed if I ever mentioned "lyme" to a conventional Dr- that was my ticket to get booted out the door.
Posted 1/19/2021 8:30 AM (GMT -7)
dcd: That's fantastic that it's being covered by insurance! Hope it helps..

Garzie: lol! Over here on the East coast it was the "k-hole" that you were stuck in.
Posted 1/19/2021 10:21 AM (GMT -7)
“ Ive never heard of Ketamine lol, and whats RSD/CRPS?“

Chronic Regional Pain Syndrome

Reflex Sympathetic Dystrophy


I thought that was what I had prior to being diagnosed with lyme.

It’s a condition - where you injure yourself and your system reacts in an exaggerated way - causing extreme pain on the limb (ususlly) and other symptoms. (Muscle atrophy ...etc)
It can also develop after surgery.

Ketamine has been used for it.
I think even ketamine induced coma was even a treatment.
Posted 1/19/2021 12:43 PM (GMT -7)

astroman said...
I thought your keto diet was helping your gut mobility and sibo, thus you were in less pain ......just recently?

Ive never heard of Ketamine lol, and whats RSD/CRPS?

You seem to have very good luck finding Drs who know some "not so known things" and procedures. When I did that in the past all I got was dead ends and road blocks so I gave up.

Also noticed if I ever mentioned "lyme" to a conventional Dr- that was my ticket to get booted out the door.

Hey astro...yea in general I've been feeling much better. I've got the inflammation way down and much better under control. I do not want to pretend like I'm healed though. Nerves are tough...once theyre damaged, their default state is pain. So even though my inflammation is way down, even the smallest flare sets me back, as the nerves get angry for days each time. I also made the mistake of going off keto for christmas, which resulted in a huge flare that really set me back. But in general I'm headed in the right direction, just gonna take a long time to get to 100%.
Posted 1/19/2021 12:47 PM (GMT -7)
Infusion wasn't too bad. Pretty relaxing. No psychedelic effects really, just got sleepy. I feel quite nauseous afterwards tho.

My nerves feel great. Much calmer and the buzzing has stopped. I can still feel the numbess though. But the pain and buzzing are much better. Feels nice to feel normal for a few hours. Question is, will this have any long-term benefits. I guess I'll find out. In the back of my mind, I know that any effects on pain are only temporary. But as stated above, i do think that this may help that excitatory feedback loop that both seems to be causing this buzzing sensation, and may be doing damage itself. Who knows, well see.
Posted 1/19/2021 1:33 PM (GMT -7)
http://www.nopainhanna.com/2015/07/17/relief-for-worst-rsd-may-lie-with-ketamine-coma/#:~:text=relief%20for%20worst%20rsd%20may%20lie%20with%20ketamine,of%20patients%20whose%20nerve%20cells%20have%20gone%20haywire.

“ The method is akin to rebooting the central nervous systems of patients whose nerve cells have gone haywire. The FDA has yet to approve coma therapy, which is induced by administering large bolus injections of ketamine and midazolam at up to 50 times the normal dose. But that has not stopped two U.S. doctors from pioneering the use of a “ketamine coma” in American patients treated at hospitals in Germany and Mexico.”
Posted 1/19/2021 1:54 PM (GMT -7)
Thank you girlie! i did not know about the ketamine comas. very interesting. If that would cure me I'd def try it!

I did 100mg over 4 hrs, which sounds similar to the first low dose protocol they mention.
Posted 1/19/2021 2:01 PM (GMT -7)
Ketamine (known recreationally as Special K when I was a teen) is used these days as an approved depression treatment, too, I believe through a weekly nasal mist. I love hearing about the medicinal value of things my friends bought from sketchy dudes when we were kids. I hope it's helpful for you, dcd! It's great that you are always trying something new and reporting back to us about it. Much appreciated.
Posted 1/19/2021 4:11 PM (GMT -7)
hahaha re: sketchy dudes! thank you saraeli smile
Posted 1/20/2021 11:55 AM (GMT -7)

dcd2103 said...
Infusion wasn't too bad. Pretty relaxing. No psychedelic effects really, just got sleepy. I feel quite nauseous afterwards tho.

My nerves feel great. Much calmer and the buzzing has stopped. I can still feel the numbess though. But the pain and buzzing are much better. Feels nice to feel normal for a few hours. Question is, will this have any long-term benefits. I guess I'll find out. In the back of my mind, I know that any effects on pain are only temporary. But as stated above, i do think that this may help that excitatory feedback loop that both seems to be causing this buzzing sensation, and may be doing damage itself. Who knows, well see.

I am rather familiar with ketamine, although I have not done it personally myself.

As for feeling nausea, hopefully they told you to not eat beforehand. Nausea is very common. If you have that during the infusion, they can give you Zofran to combat the nausea. However, around here, they just tell people to not eat beforehand. But please - don't take my advice, talk to the doctor doing the ketamine for you.

It's unfortunate so many people abused ketamine illegally. And its reputation is from such. Sadly, more people know it being used as the date-rape drug instead of the benefits of using ketamine legally for medical conditions.

Post Edited (1000Daisies) : 1/20/2021 8:21:10 PM (GMT-7)

Posted 1/20/2021 11:56 AM (GMT -7)

saraeli said...
Ketamine (known recreationally as Special K when I was a teen) is used these days as an approved depression treatment, too, I believe through a weekly nasal mist.

Around here, they do infusions instead of the nasal mist.
Posted 1/20/2021 2:50 PM (GMT -7)
Thanks 1000daisies. I will fast before tomorrow's infusion.

I was having the BEST day! 0 buzzing, 0 pain. Maybe first day I've been completely symptom free since this began almost 2y ago.

But today is my chelation day, I took my 2 drops of OSR about a hour ago. 15m later the buzzing turned back on, literally like someone flipped a switch. I felt it go on. Mercury -> glutamate induced Excitotoxicity -> buzzing/neuropathy? Did I literally just crack the code behind this phenomenon?

Post Edited (dcd2103) : 1/20/2021 2:57:05 PM (GMT-7)

Posted 1/30/2021 5:42 AM (GMT -7)
I’ve now done 4 infusions over two weeks.

The downside is that it is a bit of a slog. It really takes the whole day between the 4 hour infusion, travel time, and feeling a bit woosy afterwards.

The good news is that my pain has been significantly decreased. The buzzing is much attenuated, for now at least. The numbness is also much less noticeable, like my brain ignores it. I’m curious how long this lasts, and the jury’s still out as to if this will have any long-lasting effects.

The effects on pain are exactly what I was hoping would happen. What I hadn’t considered, however, is that I’ve also noticed lowered anxiety and a much more positive outlook. I did get some low level psychedelic effects, and became quite self reflective at several points. This type of situation usually leads to anxiety for me, but instead, at each of the points, I felt oddly a heightened sense of self confidence. It’s odd, I can’t explain, it’s almost like it’s reorganizing my brain.

I cannot speak to how well this would work for arthritic, non-nerve related pain. I think it’s great fir anyone w an amped up sympathetic who is experiencing nerve pain, central sensitization fibromyalgia, anxiety and any mish-mash of those symptoms.

Next infusion is Monday
Posted 2/2/2021 1:48 PM (GMT -7)
Glad you are seeing such improvement. smile

dcd2103 said...

The effects on pain are exactly what I was hoping would happen. What I hadn’t considered, however, is that I’ve also noticed lowered anxiety and a much more positive outlook. ... It’s odd, I can’t explain, it’s almost like it’s reorganizing my brain.

Yes, that's why ketamine is used to treat depression and anxiety, primarily for treatment resistant depression/anxiety (at least for some insurance to cover it). It can be long lasting (and usually not recommended as standalone treatment), but there is a small subset that will need/want to come back for "boosters" (and those amounts will vary). One positive benefit of ketamine is that you will know whether it will help the depression/anxiety within a few infusions, if it is going to help at all. This is very different from waiting for several weeks with a traditional anti-depressant, and thus, ketamine can be life-saving for somebody in a suicidal crisis.

This is why it's often referred to as "rewiring of the brain", eg regrowing of neural connections. They simply just don't understand this as well though.

Sorry to ramble on. Although I haven't done ketamine personally myself, I find this stuff fascinating. smile
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