Starting Ketamine for CFS

[Bigdiesel]

I’ve had CFS since 2012 and am now 63. In 2014 I had to take disability because I could no longer work. Nothing was helping other than avoiding almost everything; keeping my heart rate below 110; sleeping a lot; and taking several RX medications to cope.

A year ago Jan I tried Adderall and a light went on for me. My Dr warned about getting too used to it so I did 3 days on 1 off from then until now. I gained a nice portion of my life back, however I am now seeing this coming to an end and the benefit is rapidly getting smaller.

Next week I am starting Ketamine therapy as a “I don’t know what to do next, but I know I dont want to spend the rest of my life fatigued” attempt. Does anyone have experience with it for CFS?

 

[SarahJane]

I’ve felt lucky to have ADHD- without meds (generic Ritalin) I don’t think I’d be able to function much at all. For years before I was diagnosed I thought the ADHD had just gotten so much worse. Now I know that wasn’t it. I explored nootropics, and use some.
Microdosing Psilocybin is supposed to sometimes help ADHD, so before I was diagnosed I considered it, but I doubt it would help with MECFS.
Sorry- I know nada about ketamine.

 

[niccon]

Hello,
I had 20 sessions of Ketamine (the nasal spray type) 2 years ago. I did nothing for my CFS unfortunaltely. It was done at the hospital and I stayed a few hours every time. Right afterwards I started with LDN, and that has been hugely beneficial for me.
Kind regards

 

[Bigdiesel]

Yesterday was my first session. On a scale of 1-10 it was at least a 25! It was utterly amazing. I felt like the weight of the World was lifted and a paradigm shift had happened. I slept great all night without the usual restlessness of CFS.

I woke up this morning feeling like a new man! Of course I have along the way had a few successes that have given me similar initial feelings, though not as intense, and they wore off pretty quickly. My second session is tomorrow. I’ll keep you posted.

 

[SarahJane]

Yesterday was my first session. On a scale of 1-10 it was at least a 25! It was utterly amazing. I felt like the weight of the World was lifted and a paradigm shift had happened. I slept great all night without the usual restlessness of CFS.

I woke up this morning feeling like a new man! Of course I have along the way had a few successes that have given me similar initial feelings, though not as intense, and they wore off pretty quickly. My second session is tomorrow. I’ll keep you posted.

Omg. That’s fabulous! I had never heard of using ketamine for CFS. Definitely going to look in to it. Thanks so much. I’m eager to see your updates!

 

[SarahTee]

@Bigdiesel, that’s great news. I do hope the benefits continue.

 

[SarahJane]

Looked it up. For those interested, here’s what I gleaned at a quick glance:
It’s definitely not for everyone. It’s mostly used for treatment resistant depression. With MECFS it can maybe help with brain fog. There are different methods of administering it ( IV, nasal spray, and one other?) All methods have the risk of unpleasant side effects. The nasal spray seems like it may be the gentlest method.

 

[Bigdiesel]

Yeasterday was my 2nd of 6 sessions. It was better than the first! Absolutely incredible! I truly feel and my family is noticing new connections in my mind which don’t include unrefreshing sleep and brain fog. Each treatment is supposed to make the new connections more permanent and bury the old and it really feels like it is working. My therapist talks with me the whole session and I think that really is better for me than being alone or listening to music. It gets me to use my mind while under the effect and I feel this exercise helps.

In my 14 yrs battling this demon I’ve had only one reason for hope before this and that was Adderall almost 2 yrs ago. This one is much more profound and I pray permanent. I have researched and found people who benefit sometimes do not need a follow up treatment at all and some need one yearly or at 6 months. In any event, while Insurance pays nothing, it is completely worth it to get my life back. Hopefully enough others can benefit and the FDA can approve it for this use. The cost would drop to $100 or less.

More updates to come.

 

[Bigdiesel]

I have now completed 5 of 6 treatments. The results just keep amazing me! This drug has truly transformed me for the good and is releasing me from all of the problems from CFS.

My Therapist has cautioned me that I will probably need booster treatments. I am going to finish this treatment and then start nad+ . I will keep this updated.

 

[Tammy7]

Well...............this is very interesting. I'm happy for you. I've got some questions.........hope you don't mind. I'm curious, did you have to meet certain criteria to get ketamine treatments? I take it this may not be very common for a Dr. to treat CFS with ketamine. How did you even find a place that was willing? Did you also have to be diagnosed with depression? What type of delivery did you get?

 

[Bigdiesel]

I have just completed the initial protocol. It has been nothing short of Amazing! Desperate for something to provide relief and give me my life back, I researched everything I could and found Ketamine, particularly work from a Dr. @ Stanford Medical who retired a few years ago.

Ketamine Infusions are legal and available for treating pain, depression, chemical dependence, and Chronic Fatigue (a mix of it all in most localities and I found a few options on Maui where I live. Currently, it is off label use for all of these and most Insurance will not cover, especially for anything mental. It costs between $500-$600 an infusion so it’s over $3,000! Hopefully, with all the good news, Insurance will cover it.🤞

The infusions are done in a series of 6 one hour IV’s where you are closely monitored and micro dosed the Ketamine, an anti nausea drug, an possibly something for headaches (these are possible side effects). I had Psychotherapy with mine which I found extremely helpful. I think it helps the Ketamine find the issue in you and then form a work around for it. For me, as soon as the first session ended I knew this was IT!

I am now finding myself tackling tasks right and left. My head is no longer heavy & tired. It is light, and happy once again.

 

[Bigdiesel]

Here are some facts

 

[TVB]

I have just completed the initial protocol. It has been nothing short of Amazing! Desperate for something to provide relief and give me my life back, I researched everything I could and found Ketamine, particularly work from a Dr. @ Stanford Medical who retired a few years ago.

Ketamine Infusions are legal and available for treating pain, depression, chemical dependence, and Chronic Fatigue (a mix of it all in most localities and I found a few options on Maui where I live. Currently, it is off label use for all of these and most Insurance will not cover, especially for anything mental. It costs between $500-$600 an infusion so it’s over $3,000! Hopefully, with all the good news, Insurance will cover it.🤞

The infusions are done in a series of 6 one hour IV’s where you are closely monitored and micro dosed the Ketamine, an anti nausea drug, an possibly something for headaches (these are possible side effects). I had Psychotherapy with mine which I found extremely helpful. I think it helps the Ketamine find the issue in you and then form a work around for it. For me, as soon as the first session ended I knew this was IT!

I am now finding myself tackling tasks right and left. My head is no longer heavy & tired. It is light, and happy once again.

Thats wonderful to hear of your turn around. If I may ask you: What level of infirmed were you at your worst? Were you bed ridden...Thanks

 

[Bigdiesel]

I was unable to work and carry out some activities of daily living. On a good day I could do one thing for maybe a couple of hours. On a bad day, I’d spend up to 20 hrs in bed.

 

[pamojja]

Thanks for sharing your experiences. Glad that it works for you.

The infusions are done in a series of 6 one hour IV’s where you are closely monitored and micro dosed the Ketamine, an anti nausea drug, an possibly something for headaches (these are possible side effects). I had Psychotherapy with mine which I found extremely helpful.

What kind of doses are used?

 

[julienl]

Thanks for sharing