They are slow to respond, but do specialize in ME. Austin has been working with them for 10 months with moderate success so far. And yes, there does seem to be a gut connection to this shitty illness. His first course was a low dose antibiotic to help clear out a gut infection. There is hope, Hal.🩷
My crashes are different, and I’m currently recovering from one very slowly. It will be weeks if not months, and how functional I will be is of course still unknown. I appreciate you sharing so very much and am praying for you and your recovery. It does feel less alone, having duetted you on TikTok, now longer able to play music, experiencing this. I wouldn’t wish it on anyone, but we are here. We are still here 💜
Oh Hal. I’m just so very sorry and wish there was something I could do. I’m thankful for your connection to your higher power. Please know that I continue to pray for you. Peace before you, peace behind you, peace above you, peace below you. Peace within you. God’s peace to carry you. ❤️
Adrenaline dumps are definitely an ME issue. Your description is very descriptive! It would be so helpful if you had a physician who is well-versed in ME. There are some out there! (But I’m in Canada and don’t know US resources.) It makes all the difference to have someone who really understands and can help with long term treatment, medications, and support so you are not so alone trying to figure it all out. I hear you calling for help. <3 Gut and autonomic nervous system dysfunction are clearly indicated. Low dose naltrexone has proven to be very helpful for some. I do so hope you can get some ME expert medical help.
I wish you didn’t have crashes and I’ll be very glad to read about you finding out their cause and not having them any more. I’m going to hope that day comes - in the meantime, please know that i feel for you and appreciate the way you tell your story very much.
It's Mimi Bornstein. You and know each other through UU music circles. We've been at conferences together. I took (and loved) a harmonica class you gave one year. I just wanted to write and tell you that I have been quietly witnessing your journey through your Living In a Body podcast over the years. I want to thank you for sharing yourself so beautifully with us. For all your honesty, strength, vulnerability, humor and unstoppable creativity. I don't have a lot to share other than to thank you and let you know that I'm out here listening to you, witnessing you, holding you, praying for you and loving you. You've got a fan and a friend out here.
You describe your distress in intriguing detail as if with the clues out there in your posts, some rare and brilliant soul might intuit a solution. Keep trying. Maybe, maybe not, but the power of your words at least presses the limits of our empathy and enlarges us.
I'm so sorry to hear this, Hal. I can imagine it's not east continuing to push through and find reasons to keep going but I appreciate reading your words. Your explanations of what's going on with you are so vivid, but I know not as vivid as how you're feeling it all.
Praying for you and a solution, an exhale, healing... Anything. ♥
Hi, Hal. I just watched a TikTok about low dose naltrexone (LDN) and its use for treatment of ME/CFS (and many other autoimmune conditions). I’ll tag you there, and here’s the website mentioned in the video for further info, since you’re not looking at TikToks much these days: https://ldnresearchtrust.org
I'm in touch with a lot of people but don't have wide knowledge ofwhat initial symptoms start for people. Mine I often get a click in my brain like a switch gets flipped. I get a lot of head nerve pain, headaches and visual symptoms all. Classic ebv stage 4, Tinnitus in left ear, left lymph node swelling and sore throat. Pain hands feet and heavy arms legs and of course the exhaustion. I don't particularly get gastro symptoms but I know that can be a thing.
What I do gather across a wide section of people Inc myself is that we go over the line in our activities no matter what stage we are at. Accepting what our systems really need to stay less inflammed is incredibly hard if not impossible? I get some more energy and less symptoms and I do a little but more, smile cause I'm getting away with it until bam I'm not. I used to get so frustrated and annoyed with myself but many members tell me it's part of the package. Of course I work to pace but I'm not willing to sit or lie more than I seemingly need and so I have to take. The consequences.
Keep up the good work Hal spiritual university student. I hear there was life before phones, imagine those with M. E who had no androids or apples! There are addictive though and I have boundaries around my use but it still has a big pull. God doesnt use tec if he can do so can we 😊
Nice to see u gratitude list mine really helps each day. Xx 💜 🙏
Oh, man, those crashes sound so debilitating, aggravating. I pray you find some answer to them! In my addictive cycles (I know, totally different thing ), I feel such defeat and despair at each moment of acting on addiction. I had the same feeling reading of your descriptions. You may have a mystery symptom with your condition, but know you are not alone in your feelings.
What a rough mess of nastiness ! I am grateful for your teaching though. Crashes are what I was having 30 years ago. I thought they were seizures but I also would have cognitive crashes where I didn’t know how to turn on a faucet. I got better for a long time!! You may too. After 15 years of kind of normalcy I got a lot of it back after I developed long Covid. Now I feel so fucking fragile. My mental state is very very fragile and I’m trying to not just live waiting for dying. The sun is is out! My cat is on my lap! I am loved. But ……….
You came to maplewood way back in 2004/2005 to do music with scott parsons for a group of us kids reading poetry and blew my mind. Ive been following your story. 🙏🏼
There is a program called dynamic neural retraining system. The founder and author is annie hopper. She wrote a book called wired for wellness. Maybe you have already heard of it? I know from being there that its horrible to not be able to read or get information and i wish that i had people around me to read and comprehend it for me. A similar thing happened to me (not to your extent) and went on for two years. Her program, DNRS and treating it all like a limbic system dysfunction changed my course and gave me so much of my life back. If anyone around you can do the work of reading or for you i highly recommend it.
Hal, can you have someone reach out to the Mehlsen Klinik in Denmark. They are now able to accept new patients...https://klinikmehlsen.com/kontakt/?fbclid=IwAR3MPHb2F-V3EaY5-Qr5cBBaksjlyC0RYUG7vYivr5yl2qG6Qnudub1UKgE
They are slow to respond, but do specialize in ME. Austin has been working with them for 10 months with moderate success so far. And yes, there does seem to be a gut connection to this shitty illness. His first course was a low dose antibiotic to help clear out a gut infection. There is hope, Hal.🩷
My crashes are different, and I’m currently recovering from one very slowly. It will be weeks if not months, and how functional I will be is of course still unknown. I appreciate you sharing so very much and am praying for you and your recovery. It does feel less alone, having duetted you on TikTok, now longer able to play music, experiencing this. I wouldn’t wish it on anyone, but we are here. We are still here 💜
Oh Hal. I’m just so very sorry and wish there was something I could do. I’m thankful for your connection to your higher power. Please know that I continue to pray for you. Peace before you, peace behind you, peace above you, peace below you. Peace within you. God’s peace to carry you. ❤️
Adrenaline dumps are definitely an ME issue. Your description is very descriptive! It would be so helpful if you had a physician who is well-versed in ME. There are some out there! (But I’m in Canada and don’t know US resources.) It makes all the difference to have someone who really understands and can help with long term treatment, medications, and support so you are not so alone trying to figure it all out. I hear you calling for help. <3 Gut and autonomic nervous system dysfunction are clearly indicated. Low dose naltrexone has proven to be very helpful for some. I do so hope you can get some ME expert medical help.
I wish you didn’t have crashes and I’ll be very glad to read about you finding out their cause and not having them any more. I’m going to hope that day comes - in the meantime, please know that i feel for you and appreciate the way you tell your story very much.
Hi Hal,
It's Mimi Bornstein. You and know each other through UU music circles. We've been at conferences together. I took (and loved) a harmonica class you gave one year. I just wanted to write and tell you that I have been quietly witnessing your journey through your Living In a Body podcast over the years. I want to thank you for sharing yourself so beautifully with us. For all your honesty, strength, vulnerability, humor and unstoppable creativity. I don't have a lot to share other than to thank you and let you know that I'm out here listening to you, witnessing you, holding you, praying for you and loving you. You've got a fan and a friend out here.
You describe your distress in intriguing detail as if with the clues out there in your posts, some rare and brilliant soul might intuit a solution. Keep trying. Maybe, maybe not, but the power of your words at least presses the limits of our empathy and enlarges us.
I'm so sorry to hear this, Hal. I can imagine it's not east continuing to push through and find reasons to keep going but I appreciate reading your words. Your explanations of what's going on with you are so vivid, but I know not as vivid as how you're feeling it all.
Praying for you and a solution, an exhale, healing... Anything. ♥
Sending love, gentle hugs, and support.
Hi, Hal. I just watched a TikTok about low dose naltrexone (LDN) and its use for treatment of ME/CFS (and many other autoimmune conditions). I’ll tag you there, and here’s the website mentioned in the video for further info, since you’re not looking at TikToks much these days: https://ldnresearchtrust.org
I'm in touch with a lot of people but don't have wide knowledge ofwhat initial symptoms start for people. Mine I often get a click in my brain like a switch gets flipped. I get a lot of head nerve pain, headaches and visual symptoms all. Classic ebv stage 4, Tinnitus in left ear, left lymph node swelling and sore throat. Pain hands feet and heavy arms legs and of course the exhaustion. I don't particularly get gastro symptoms but I know that can be a thing.
What I do gather across a wide section of people Inc myself is that we go over the line in our activities no matter what stage we are at. Accepting what our systems really need to stay less inflammed is incredibly hard if not impossible? I get some more energy and less symptoms and I do a little but more, smile cause I'm getting away with it until bam I'm not. I used to get so frustrated and annoyed with myself but many members tell me it's part of the package. Of course I work to pace but I'm not willing to sit or lie more than I seemingly need and so I have to take. The consequences.
Keep up the good work Hal spiritual university student. I hear there was life before phones, imagine those with M. E who had no androids or apples! There are addictive though and I have boundaries around my use but it still has a big pull. God doesnt use tec if he can do so can we 😊
Nice to see u gratitude list mine really helps each day. Xx 💜 🙏
Staying with you, brave Hal.
Oh, man, those crashes sound so debilitating, aggravating. I pray you find some answer to them! In my addictive cycles (I know, totally different thing ), I feel such defeat and despair at each moment of acting on addiction. I had the same feeling reading of your descriptions. You may have a mystery symptom with your condition, but know you are not alone in your feelings.
What a rough mess of nastiness ! I am grateful for your teaching though. Crashes are what I was having 30 years ago. I thought they were seizures but I also would have cognitive crashes where I didn’t know how to turn on a faucet. I got better for a long time!! You may too. After 15 years of kind of normalcy I got a lot of it back after I developed long Covid. Now I feel so fucking fragile. My mental state is very very fragile and I’m trying to not just live waiting for dying. The sun is is out! My cat is on my lap! I am loved. But ……….
NIH sess a link with microbiome in gut too:
https://www.nih.gov/news-events/news-releases/studies-find-microbiome-changes-may-be-signature-mecfs
You came to maplewood way back in 2004/2005 to do music with scott parsons for a group of us kids reading poetry and blew my mind. Ive been following your story. 🙏🏼
There is a program called dynamic neural retraining system. The founder and author is annie hopper. She wrote a book called wired for wellness. Maybe you have already heard of it? I know from being there that its horrible to not be able to read or get information and i wish that i had people around me to read and comprehend it for me. A similar thing happened to me (not to your extent) and went on for two years. Her program, DNRS and treating it all like a limbic system dysfunction changed my course and gave me so much of my life back. If anyone around you can do the work of reading or for you i highly recommend it.