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

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  1. kat0465

    Which CFS Symptom Do You Hate the Most?

    Yes wave runner, it's endless misery! Crushing fatigue, pem, heart issues are my worst symptom.
  2. kat0465

    Looking Bad

    I didn't the first few years.that's why my family and friend didnt think I was sick. However it's been over 20 years for me now, and its really aged me beyond my 46 years :( friend my age look great. I guess if I could exercise, and didn't feel like I was dying every day I'd look pretty...
  3. kat0465

    Feel extreme head pressure/exploding head/PMS

    Leaves, don't have a clue whAt it is. But I get it from time to time. Its been so severe I was prepared to wake up In the hospital, or not at all!! The pressure is so Intense,im afraid my head will cave in. And like you it dosent last but a few minutes. Although I've had it 3or4times in one...
  4. kat0465

    What Actually Fixes the Gut?

    Boy, those gut problems really suck!! I got h pylori about 9 months ago, and while the infection is gone. I'm still dealing with problems I never had before ;/ I can tell you mastic gum and lauracidin made a huge difference. I took both with the triple abx protocol. I only took about half of...
  5. kat0465

    Does anyone else have a problem with vommiting or their colon not working?

    Mya, I went thru about 6 months of vomiting.2 months was intense couldnt hold anything down. They scoped me and didn't find much of anything:/ It slowly got better after months, and I lost almost 50 lbs! As for the colon thing, it could be a rectocele. Or something called a peritoneal prolapse...
  6. kat0465

    Deteriorating handwriting - is this an ME symptom?

    Just another weird symptom, I used to have really Good handwriting. But now it looks horrible, barely legible :( and the worse I feel the worse the writing is. I used to journal everyday,but I can hardly read what I'm writing anymore :/ ask your dr for sure tho, I've never told mine about it...
  7. kat0465

    Question to all

    Hi birdy Welcome to the forum I think we have all felt the way you do, if you need support your at the right place. There's not only great people here, there's a wealth of knowledge on this board. I probably went to 2 dozen drs before I found one that knew about cfids, or even wanted to...
  8. kat0465

    Losing weight and not trying.

    Been there did that. Its gotta be something messing with our digestion, not to be gross, but I could eat a meal and hours later get so nauseated I would vomit, and the food wouldn't even be digested ;( I lost about 45 lbs, and got down to about 108. It was scary, and no dr could tell me why I...
  9. kat0465

    Is growing your own probiotic yoghurt possible?

    Rustyj, Ever thought about growin kefir??
  10. kat0465

    H Pylori

    Marco, In January I got really sic with what my dr thought was gallstones. Turned out it was h pylori. They put me on the 2abx,pep to, and an acid blocker. The abx was hard to take. I only managed half the dose per day and did a week, not the whole two weeks, they made me feel soo sick;( I did...
  11. kat0465

    Alternative Ways of Administering High Dose Vitamin B12

    Several years ago, my doc gave me a form of nasal b12. It was in a bottle like nose spray, except it was thicker. I'm sure they still make this, ask your doc. Kat
  12. kat0465

    Fever

    When I first became sick, I'd get fevers with different stuff, now I'm usually below normal. If I'm at 99 or 100 that's a big fever for me, Although it dosent happen often.the best explanation I can give you is the viruses we carry around, in my case ebv and hhv6,are at chronic levels. And...
  13. kat0465

    Daily Worldwide Prayer for ME/CFS/FM - Please Join

    Happy Easter rosa, qnd everyone! Have a blessed peaceful, and pain free day. " his grave is empty, my redeemer lives" {{ hugs}} kat
  14. kat0465

    methylation: VERY low, very slow.....results

    Boy did I need to hear this!!! I have also been sick for 20+years.and have been afraid to try something that will probably make me feel worse before I feel better. Or have no change at all,just the thought of 5 or 6 more supps has me dragging my feet. You having no pem is huge!!that's probably...
  15. kat0465

    No one REALLY gets it

    Neilk, Im so sorry your hurting so bad. I think we all have those times when we feel like were just taking up space. Some are blessed to have people around them who understand, my family is a lot like yours. 20 years of this misery, and mine dont bat an eye when I feel as bad as you are :( The...
  16. kat0465

    GCMAF FROM DAVID NOAKES WORK VERY GOOD

    Vera, what is GCMAF? Is it an injection?? Please keep us posted on How your doing with it. Also is it vey expensive Thanks, kat
  17. kat0465

    hard to describe hot feeling

    yes Knackers i do that a lot. i can be feeling kinda ok, then try and get up and do something, then it starts. i keep waiting to spontaneously combust ;/ i thought it was a hormonal thing, but i dont think so, it's like my body cant regulate its thermostat.... Wierd. Kat
  18. kat0465

    did anybody see the aol front page??

    yea,just go to aol dot com and you can scroll to the side on all the latest news
  19. kat0465

    did anybody see the aol front page??

    i was going to post it on here, but didnt know if i could. it pretty much talks about the study they aired on cbs, but elaborates a little more.
  20. kat0465

    Liver & Spleen Swelling

    Have you been tested for reactivated ebv? Just a thought as ebv virus is what causes mono,and some people have a swollen liver with that. Also any new meds?
  21. kat0465

    WANT TO BLOW $9000 in one DAY?

    therea only 2 or 3 that i dont have, most of those complaint are quite common im afraid ;/
  22. kat0465

    WANT TO BLOW $9000 in one DAY?

    you got that right! although i have a pretty decent dr now, there was a time i just knew i was going to die on a ER floor.now i cant work at a prefession i went to school and paid good money for, i have to watch as we slowly go in debt, because of me, husband probably wont ever be able to...
  23. kat0465

    WANT TO BLOW $9000 in one DAY?

    Im all for Dr's making a living doing what they supposedly love, hey it's america. we all should be lucky enough to make a good living working. But i do however have a problem with Dr's who become filthy rich from very sick patients, who feel they have no option but to scrape up the $$$ for a...
  24. kat0465

    ME/CFS and Fibromyalgia

    "Kat, your post stopped me in my tracks. We all seem to struggle so hard for so many years to find even a half descent doctor, and yet you have found one of the opposite extreme. I'd hang onto this doc. " Cloud, yes, she is a great Dr. after going to dozens for years i finally found her. i...
  25. kat0465

    Protandim

    the one thing that kinda makes me think theres something to it was Montel Williams. No telling what all he takes, but when he ran out of the supp and his people didnt tell him, he couldnt understand why he was feeling worse. he asked his assistant who packs his pill box, and she said they had...
  26. kat0465

    Protandim

    it looks great on here thats for sure, i was impressed with all the info on it. it must be promising, it seems they have put a looot of $$$ into the supp, not too expensive, so i may give it a try. Kat
  27. kat0465

    ME/CFS and Fibromyalgia

    my doc, who is a aids specialist, but sees tons of us. thinks they are the same disease,but thinks cfids/me is a more severe form. it makes sense. Kat
  28. kat0465

    h pylori

    what do you mean by "coated" alice? does it taste good??
  29. kat0465

    h pylori

    thanks for the video anne, if i cant find the natural, unpasteurized kind. ill just make it. by the time it's ready to eat i should be off the abx! Kat
  30. kat0465

    h pylori

    maryb, also something called mastic gum is supposed to get rid of it.i have read you can take it even when doing abx. pine nut oil is supposed to be good for killing the little buggers too! gonna try both, because i dont want to have to do abx for this again!!