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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Search results

  1. SueJohnPat

    Abilify- Stanford Clinic Patients

    I take 0.25 mg in the morning been on it for approximately 2months.
  2. SueJohnPat

    Abilify- Stanford Clinic Patients

    I am having success with the drug but my sleep has been screwed up more that usual. Just soldiering through at this point.
  3. SueJohnPat

    Is neural/limbic retraining (DNRS) a treatment for ME/CFS or not?

    Great post ! You articulate this Process so well. I did Dnrs and did not become “ cured “ but now able to sleep indoors and I tailored it in a very personal way. Letting go of stressful events . Changing your reactions to stressful people and events. I just hike in the woods alone and have long...
  4. SueJohnPat

    Abilify- Stanford Clinic Patients

    I have been trying everything for 10 years. I have made progress. . My body had stopped torturing me for the most part just felt blah like stuck for the last year or so.
  5. SueJohnPat

    Abilify- Stanford Clinic Patients

    I am taking 2.5 mg daily at bedtime ( mostly) . One day I forgot and switched it to the am . No adverse effects.
  6. SueJohnPat

    Abilify- Stanford Clinic Patients

    Thank you I will.
  7. SueJohnPat

    Abilify- Stanford Clinic Patients

    Totally . Like my brain went from neutral to drive!
  8. SueJohnPat

    Abilify- Stanford Clinic Patients

    Still doing well with ability. Ran an ad on Facebook to sell excess furniture. I am replying to responses and actually have a sale today. I have been meaning to do this for a year. Also went to supermarket put stuff away , mailed a birthday gift to a friend . Weird it is like I am waking up a...
  9. SueJohnPat

    Abilify- Stanford Clinic Patients

    Just easy to remember. I am taking a very low subtheraputic dose. Unlike a lot of people in this site I am not that sensitive at all to medications. I could take it in am . For me I don’t think it matters.
  10. SueJohnPat

    Abilify- Stanford Clinic Patients

    I had improved somewhat with mold avoidance. “ flu like feeling had abated after a few years. I had slept outdoors in a travel trailer for about 2 years and did neural retraining. This led to less “ mold “ sensitivity and improvements with neural retraining — was able to sleep indoors and not...
  11. SueJohnPat

    Abilify- Stanford Clinic Patients

    I Still doing well. I actually think about things like trying to organize my house and doing laundry and I vacuumed today . Weird feel “ normal” . I do go to bed very early still and need breaks but much more clear. I am a “retired” pharmacist and feel like my old sharper self . I actually...
  12. SueJohnPat

    Abilify- Stanford Clinic Patients

    I have been taking ability (2.5mg) it for 4 days. I should wait before I say anything but I was in a crash for a month( this is what prompted me to try it. — now I feel almost normal. Doing chores around the house . I have moderate-me/cfs. I am not sensitive to medication much at all with a...
  13. SueJohnPat

    Abilify- Stanford Clinic Patients

    I totally agree. There is no extensive research so how can there be an answer without scientific proof.
  14. SueJohnPat

    Abilify- Stanford Clinic Patients

    Hip has this in the under the treatment thread. I had used this to source Xiafaxamin a few years ago and had no problem.
  15. SueJohnPat

    Forest therapy and nk cells

    I am a big fan of forest bathing. I have been doing it for a few years. I have improved to where I am more functional than I used to be.
  16. SueJohnPat

    Flu vaccine and ME/CFS - MEA info leaflet for 2017 - 2018 vaccine

    I would like to know the sources for the studies.
  17. SueJohnPat

    ME/CFS Rarely Adrenal Fatigue - It's Far More Likely a "Cell Danger Response" by Mitochondria

    Right now I am mostly in on the “ cell danger response “ It makes sense for what I ( with CFS ) and my son ( aspergers) have experienced. I have become an outdoor enthusiast and hike often with my son. We camp and go into nature a lot. We have a quiet house and often walk along the beach ( an...
  18. SueJohnPat

    Comment by 'SueJohnPat' in 'Treatment that is working for ME!'

    You sound like me. I now have good days and weeks then a week where I can function but have no enthusiasm and get frustrated by my limits. Ugh it is hard to explain. If I try to push through I know now to just STOP!, but may only last a few hours.
  19. SueJohnPat

    Is neural/limbic retraining (DNRS) a treatment for ME/CFS or not?

    Just go with the process. It can be a roller coaster and symptoms may get worse before they get better then worse then better Ugh — Good luck and try to enjoy the process and make it your own ! Good luck !
  20. SueJohnPat

    Is neural/limbic retraining (DNRS) a treatment for ME/CFS or not?

    I have been doin DNRS for 18 months. This can take a long long time. I was in a semi recovery from mold avoidance. I immediately had a few small results — the “ bad “ taste that had constantly been in my mouth went away. Then I got awful diarrhea from dairy , then 2 weeks later could eat dairy...
  21. SueJohnPat

    Comment by 'SueJohnPat' in 'Treatment that is working for ME!'

    Hi, I have been not been here for awhile. I sleep next to my house in a travel trailer. I have had some setbacks but am moving forward. Hi I am doing well. It is a very long and slow process,, I sleep in a travel trailer ( we bought a new tab 400) . Next to my house. We moved all of our...
  22. SueJohnPat

    Comment by 'SueJohnPat' in 'Treatment that is working for ME!'

    I agree with everything you said. Thank you. I did everything you did except for seeing a (CFS) specialist. I “ detoxed “ mold” and still sleep outdoors. ( mold avoidance but not extreme) I am doing a modified DNRS while hiking in a state forest. I can now hike for 5 miles . I am getting my...
  23. SueJohnPat

    Japanese forest bathing

    Still hanging out in the forest. I am very much improved feel like my old self much of the time. Still doing DNRS while hiking in forest or if it is too hot at at home. Able to live an almost normal life again. I still need a rest in the afternoon on some days. Have a social life again , Able...
  24. SueJohnPat

    Anyone tried Limbic Retraining: Dynamic Neural Retraining System?

    I have been doing DNRS for 9 months. I had fibromyalgia/ CFs since 2009. My symptoms have morphed over the years. First severe pain ( fibromyalgia) so bad I was on fentanyl for 2 years. Got off fentanyl using ( pridgen protocol) Celebrex and Valtrex. After severe pain got better my brain felt...
  25. SueJohnPat

    Japanese forest bathing

    I think if you can meditate and “pretend” you are in a forest or a beach this may help. I am practicing neural retraining . If I can’t get to the forest I put on a u tube video of nature close my eyes and pretend I am there. I am doing this to get my “ hyperarousal to “ mold” down while...
  26. SueJohnPat

    Can you be "too clean"?

    I am sorry you are experiencing this. I just had a terrible experience. I went to the me/ cfs conference in Bethesda Maryland. I was feeling great drove down by myself. I have been sleeping all winter in a new travel trailer next to my house. I am able to hike up to 6 miles. I slept in the...
  27. SueJohnPat

    What Fixed/Aided Your Brain Fog?

    We found mold in our basement. I also read if Erik Johnson’s experience and researched Dr Shoemaker. I did not think it was necessary to spend thousands of dollars just got my family to prescribe cholestyramine ( which is a treatment for the chronic diarrhea I was having. ) I shut the basement...
  28. SueJohnPat

    ME is not mould intolerance; mould intolerance is not ME

    This seems plausible. I myself find mold is a big factor. I do not think anyone is right or wrong here. I really think gut issues environmental issues “ Lyme” will all pan out to be part of a similar “ disorder”. We need bio markers . I avoided mold but also took anti parasite medications. I...
  29. SueJohnPat

    Anyone seen a Psychopharmacologist?

    I was a pharmacist for 23 years. I worked as a community pharmacist. I am very much improved. In my case pharmaceuticals helped alleviate some severe symptoms but did nothing as far as actually healing. The exception was valtrex And Celebrex ( modified Pridgen Protochol) . I still take...