4 ms·

oh say more?

by npunt 3mo ago

oh say more?

cjbgkagh 3mo ago
This is why I took it, auto immune related ME/CFS. Works great. I still get PEM but outside of that I get to live a normal life.
- emmelaich 3mo ago
  Interesting! Is it possible that you're just eating less of whatever triggers the autoimmune symptoms?
  - cjbgkagh 3mo ago
    No, if that’s all it was then ME/CFS would be a cake walk and it isn’t. I have such a crazy restrictive diet and have had for a long time that one of my issues was being kicked out of doctor's offices for looking too healthy. The diet is necessary but not sufficient.
    - s5300 3mo ago
      [dead]
    - jelsisi 3mo ago
      I'm in the same boat! I look very healthy, I'm young and most of my bloodwork is great but I have many autoimmune symptoms. I started on semaglutide 1 week ago and your comment brings me hope.
      - cjbgkagh 3mo ago
        I started on an extremely small dose and worked up very slowly because I predicted and did in-fact have hyperactivity to it. I got gastroparisis and the associated huge amount of vomiting, couldn’t eat for the first few weeks. But slowly over the course of 3-6 months I was having few and fewer bad days. I take a bunch of other meds as well but this one is one of the most effective. I also do LDN, Amitryptiline, Modafinil, TUDCA, DIM, low dose of TRT and Ipamorelin/ModGRF. I eat the absolute minimum in sugar, one meal per day, and that is usually a large kale salad. The Modafinil / Amitryptiline is probably the most effective treatment I’ve tried, followed by the semaglutide, then the TRT/hGH peptides.
        Scalestein 3mo ago
        Super interesting - my friend has ME/CFS and/or Fibromyalgia and started GLP-1 but seemed to get only the negative side effects and not much benefit. Using Zepbound specifically. Is the Modafinil used for alertness or a different off label purpose? I'm always interested in potential helpful interventions.
        cjbgkagh 3mo ago
        That reaction could very much be dose dependent. I think those in most need of the effect start out very hypersensitive to it and that reaction could easily obscure any benefits. I use Modafinil and Amitryptiline as a rather unorthodox method for treating dysautonomia which seems to be an intrinsic precursor to ME/CFS, at least in my case where I have hEDS from a number of TNXB variants. My overall theory is that a combination of anxiety disorders (genetic inability to ameliorate stress) pushes me into a Sympathetic state and keeps me there to the point that cytokines (or some undiscovered small molecule) are created by the immune system to knock me out of that state as a backup to other mechanisms that have stopped working. So I studied some psychopharmacology to design a drug combo that wouldn’t override the autonomic state so I could both work with my natural rhythms (using weaker ligands) and increase the magnitude of the swings so that I could spend enough time in the Parasympathetic state to obviate the need for the immune system backup. I take a lower dose of Modafinil (100mg started and stayed at this dose no apparent tolerance build) and am genetically very sensitive to caffeine so that and one coffee is enough to get me amped for the entire day, but I need amitryptiline to bring me back down to sleep (started as 25mg and many years later I’m at 125mg due to increasing tolerance). I do want to bring down my reliance on amitryptiline but I’m working crazy hours and figure I can wait to titrate down my dose later. I’ve been at this same dose for a year now so it’s at least not getting any worse).
        Scalestein 3mo ago
        Super interesting - friend is on a Adderall and Trazedone stack for energy/focus + sleep aid. Amitriptyline looks very interesting though I don't think they've tried that. Thanks for the information, it's such a frustrating condition with a dearth of good information and research.
nwienert 3mo ago
I've been posting about this including here for years now. I wrote a long post about it a while ago here and on Reddit. At time no one was talking about it, and actually my Reddit post was buried behind tons of others which was frustrating at the time given I had basically shared a partial cure. Now if you search "reddit eds glp-1" or tirzepatide you'll see tons and tons of long threads of people all saying the same thing - it's the only thing that actually helps. For me it was something of a miracle, I have two overlapping immune issues and it seems to just turn me into a much more normal, functional person. Including fixing my sleep. Never was overweight beyond maybe ~15lbs btw when I started or took it, and the effects are 100% not because of just fasting or weight loss. I had tried keto and OMAD before, and been at healthy weight my whole life. There's a definite auto-immune modulating mechanism and it's so strong it seems better than basically most first-class drugs. Even things like prednisone which are like nuclear weapons don't give me relief like Tirzepatide does. Btw highly recommend Tirzepatide of the three GLP-1 drugs, for me at least it's by far the most effective and least side effects.

oh say more?

by npunt 3mo ago

oh say more?

This is why I took it, auto immune related ME/CFS. Works great. I still get PEM but outside of that I get to live a normal life.

emmelaich 3mo ago
Interesting! Is it possible that you're just eating less of whatever triggers the autoimmune symptoms?
- cjbgkagh 3mo ago
  No, if that’s all it was then ME/CFS would be a cake walk and it isn’t. I have such a crazy restrictive diet and have had for a long time that one of my issues was being kicked out of doctor's offices for looking too healthy. The diet is necessary but not sufficient.
  - s5300 3mo ago
    [dead]
  - jelsisi 3mo ago
    I'm in the same boat! I look very healthy, I'm young and most of my bloodwork is great but I have many autoimmune symptoms. I started on semaglutide 1 week ago and your comment brings me hope.
    - cjbgkagh 3mo ago
      I started on an extremely small dose and worked up very slowly because I predicted and did in-fact have hyperactivity to it. I got gastroparisis and the associated huge amount of vomiting, couldn’t eat for the first few weeks. But slowly over the course of 3-6 months I was having few and fewer bad days. I take a bunch of other meds as well but this one is one of the most effective. I also do LDN, Amitryptiline, Modafinil, TUDCA, DIM, low dose of TRT and Ipamorelin/ModGRF. I eat the absolute minimum in sugar, one meal per day, and that is usually a large kale salad. The Modafinil / Amitryptiline is probably the most effective treatment I’ve tried, followed by the semaglutide, then the TRT/hGH peptides.
      - Scalestein 3mo ago
        Super interesting - my friend has ME/CFS and/or Fibromyalgia and started GLP-1 but seemed to get only the negative side effects and not much benefit. Using Zepbound specifically. Is the Modafinil used for alertness or a different off label purpose? I'm always interested in potential helpful interventions.
        cjbgkagh 3mo ago
        That reaction could very much be dose dependent. I think those in most need of the effect start out very hypersensitive to it and that reaction could easily obscure any benefits. I use Modafinil and Amitryptiline as a rather unorthodox method for treating dysautonomia which seems to be an intrinsic precursor to ME/CFS, at least in my case where I have hEDS from a number of TNXB variants. My overall theory is that a combination of anxiety disorders (genetic inability to ameliorate stress) pushes me into a Sympathetic state and keeps me there to the point that cytokines (or some undiscovered small molecule) are created by the immune system to knock me out of that state as a backup to other mechanisms that have stopped working. So I studied some psychopharmacology to design a drug combo that wouldn’t override the autonomic state so I could both work with my natural rhythms (using weaker ligands) and increase the magnitude of the swings so that I could spend enough time in the Parasympathetic state to obviate the need for the immune system backup. I take a lower dose of Modafinil (100mg started and stayed at this dose no apparent tolerance build) and am genetically very sensitive to caffeine so that and one coffee is enough to get me amped for the entire day, but I need amitryptiline to bring me back down to sleep (started as 25mg and many years later I’m at 125mg due to increasing tolerance). I do want to bring down my reliance on amitryptiline but I’m working crazy hours and figure I can wait to titrate down my dose later. I’ve been at this same dose for a year now so it’s at least not getting any worse).
        Scalestein 3mo ago
        Super interesting - friend is on a Adderall and Trazedone stack for energy/focus + sleep aid. Amitriptyline looks very interesting though I don't think they've tried that. Thanks for the information, it's such a frustrating condition with a dearth of good information and research.

nwienert 3mo ago

I've been posting about this including here for years now. I wrote a long post about it a while ago here and on Reddit. At time no one was talking about it, and actually my Reddit post was buried behind tons of others which was frustrating at the time given I had basically shared a partial cure. Now if you search "reddit eds glp-1" or tirzepatide you'll see tons and tons of long threads of people all saying the same thing - it's the only thing that actually helps. For me it was something of a miracle, I have two overlapping immune issues and it seems to just turn me into a much more normal, functional person. Including fixing my sleep. Never was overweight beyond maybe ~15lbs btw when I started or took it, and the effects are 100% not because of just fasting or weight loss. I had tried keto and OMAD before, and been at healthy weight my whole life. There's a definite auto-immune modulating mechanism and it's so strong it seems better than basically most first-class drugs. Even things like prednisone which are like nuclear weapons don't give me relief like Tirzepatide does. Btw highly recommend Tirzepatide of the three GLP-1 drugs, for me at least it's by far the most effective and least side effects.