• Welcome to Phoenix Rising!

    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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Search results

  1. K

    Aseptic meningitis post covid in cci patient

    Hi everyone, It has been a while since I have posted. I'm not sure if anyone has had this issue but I figured it was a good idea to let people know this was happening in case someone else encounters this. I had CCI surgery with traction in September 2021. At the time I was receiving IVIG...
  2. K

    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    @Anncomingtogrips : I'm so glad to hear you are better. I had this surgery last September and have improved greatly. I'm waiting to really talk about it until after its been a year because the recovery is so challenging and I'm still trying to figure out my new baseline. The fatigue is gone...
  3. K

    For the ladies: makeup and MCAS

    I've ordered from beauty counter although it is expensive. I just use their concealer, eyeliner pencil and mascara. I don't use a lot of makeup though because i never know if my body will turn on it. I'm not sure if it contains coconut oil though.
  4. K

    SFN without pain?

    I just got this diagnosis as well. My Dr is going to try diavasc as a medication. His thoughts are to improve blood flow to help with SFN and raynauds. I guess some other practitioners were trying this out. I'm already on gammaguard ivig so hopefully this will help make things a little better...
  5. K

    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    I care about what the people on the M.E. Spine and brain page think because most of them have either had the surgery or investigated the surgery. Our patient population has been extremely helpful in coming up with treatments and reviewing my stuff especially when most Dr's wouldn't help. My...
  6. K

    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    I got my scans back and have been on the fb page with them. I wasn't sure they were going to find anything and then they did. My dens is tilted towards my spinal cord. The people in the fb group said my scan looked awful. I've made an appt with dr.b but the earliest they could see me is the end...
  7. K

    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    I'm going in tomorrow for my MRI. I'm nervous that they won't find anything. I was diagnosed with mixed connective tissue disorder by a geneticist. We looked into this because my sister was diagnosed with EDS. I've had issues with my joints for most of my life and I've had 3 major concussions...
  8. K

    Hello everyone and welcome. About VTose and Crasing...

    This sounds very interesting. Keep us posted!
  9. K

    Feeling anxious about going back to work after six months

    I work at a grocery store. I'm hoping it will be as safe as possible but there are times people come in without masks and make a stink. Can't be much worse than being immune compromised and having people in there coughing on everything (as I've watched people do pre-covid). I need to get...
  10. K

    For those sensitive to light bulbs (any type)

    That is what I did. And the incandescent measured less than the LED light. Perhaps this is why it registered so high? And perhaps this is why it bothers me so much. I don't know but my body can tell the difference. I'm not sure how I subconsciously notice when my husband stays up to watch tv...
  11. K

    Feeling anxious about going back to work after six months

    @keepswimming , I'm so glad this is working out for you. I'm about to head back soon and understand your apprehension. I'm not sure how it is going to go but my Dr was able to get me IVIG to keep my immune system up so I don't get month long illnesses any more. Now I'm hoping I don't get...
  12. K

    For those sensitive to light bulbs (any type)

    I'm really glad you don't have this sensitivity. Because having it is really terrible. It must be nice to not have to worry about these things. If I told you how upset my husband got after having it pointed out constantly when he left the wifi on... I don't need a double blind study, what I need...
  13. K

    For those sensitive to light bulbs (any type)

    Thank you for the link. I've considered this but I was able to make my room a better environment by shutting off the breakers around the bed room. I had to put black out shades and secure them into the windows because the blue light street lamps that they put in two years ago made it impossible...
  14. K

    For those sensitive to light bulbs (any type)

    So I have a meter and the EMFs were lower with the incandescent bulb. But I was still feeling nauseas even though they were lower which is why I checked it with the light out. Current is always going through the wires. I had to get special emf kill switches for certain outlets in the house. I...
  15. K

    For those sensitive to light bulbs (any type)

    Hi @Strawberry , I was diagnosed as being electro sensitive by the same specialist that diagnosed my M.E. And he was totally serious. Turns out I am extremely sensitive to EMFs. That includes light bulbs. I had to replace everything with incandescent bulbs. I would feel nauseas and sick to my...
  16. K

    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    Hi @valentinelynx , Thank you for the info. I'm currently looking into dr. Bolgonese as my area doesn't have an upright mri machine and the nearest is one state away which would mean I'd need to quarantine to get to and from. My sister is also interested in a scan since she is in mass and can't...
  17. K

    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    I'm still researching this issue as I'd like to suggest looking into this to my dr. I heard the Facebook group is more active with surgery info? Is that the beyond the measurement group or is there another group? I tried to find Jen brea's group but couldn't find it.
  18. K

    Tethered cord syndrome

    Hi @lenora , You can buy the bones on www.uswellnessmeats.com. Most of their stuff comes frozen. Works well for broth. Also they have organ meats.
  19. K

    Cytomegalovirus, Epstein-Barr Virus and Human Herpesvirus 6 Infections in ME/CFS

    Thank you, it is helpful, but I'm trying to figure out what to do about it. I've been feeling better since doing IVIG, but I know that virus was active in my system for a long time. I'm scared I'm going to lose my progress and go backwards. So I'm hoping to see how others have treated this beast...
  20. K

    Cytomegalovirus, Epstein-Barr Virus and Human Herpesvirus 6 Infections in ME/CFS

    So are you basing your experiments on the thought that EBV contributes to cancer? I read what I could of the article, but I am no expert. I'm researching for my specialist about treating my EBV. When you are ready to share your process please let me know. I've seen your results and read your...
  21. K

    Cytomegalovirus, Epstein-Barr Virus and Human Herpesvirus 6 Infections in ME/CFS

    Hi gbells, I've seen your experiments. Looks interesting. What are you using to cause the ebv to go through apoptosis?
  22. K

    Cytomegalovirus, Epstein-Barr Virus and Human Herpesvirus 6 Infections in ME/CFS

    So what have people tried to tame the EBV? I have high titers for EBV and also I had high levels of EBV early antigen D. I've heard two different things from Dr's. One that it matters, one that it doesn't....
  23. K

    Damaged nerve cells?

    I found at my worst if I got angry I got really weak and shaky as well. My whole body would start shaking. It was pretty weird.
  24. K

    Help figuring out the next direction...

    Hi, I responded in the hydrocortisone thread. Hopefully my info will be useful. I'm on 1200mg of NAC daily. I take it in two doses. After reading your post about the b vitamins I went back and looked at my intake. I'm getting 75mcg of b12. I'm getting 1001mcg of folate (b9) and 4 mcg of b6...
  25. K

    Anti-inflammatories may reduce symptoms in the short-term, but may not in the long-term

    So I have used hydrocortisone for the last 3-4 years. I believe my specialist used it as support for my adrenals not really as a immune suppressor or anti inflammatory. Basically he wanted to start working on my gut first but I kept showing up to my appointments falling asleep in the waiting...
  26. K

    Help figuring out the next direction...

    It's probably been about 3 years on the hydrocortisone. I have a really hard time figuring out times/dates. So everything has been an approximate for me. The nac I'm still taking and have been since 2017 when I first started seeing my specialist. It was hard to determine what was helping at...
  27. K

    Help figuring out the next direction...

    Hi everyone, It has been a really long time since I have posted here. I'm hoping to get some input based on what I've been going through and what the next step should be as my dr is trying to figure it out with me and I feel we need all the guidance we can get. My ME started after an illness I...
  28. K

    no fibromyalgia pain in 6 months

    Wow, that lady does cross fit? I'm just recovering and I can't even imagine this. I have one of these lights I used for plants maybe I'll try it out.
  29. K

    psychosomatic is the root of all?

    "Please does someone have prove to break this dogma that this famous theorycould be wrong??" Sorry my quote thing is not working today. I'll tell you that this is wrong from my own experience. They sent me to therapy for 7 months after my son was born and I had a flare up. I couldn't walk so I...
  30. K

    PEMF device experiences

    Hi @PatJ , I haven't played with it enough to see if there is a difference. I don't have a way to monitor my blood pressure so I'm not sure if it does this. I do want to say that the side effects I've had are slight headache, dizziness, and light headedness. I've also felt pretty spacy. Also...