• 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.

    To become a member, simply click the Register button at the top right.

Search results

  1. J

    New Labs...

    New labs- this is just what was flagged. I am speaking to my doctor tomorrow. UIBC- 110 Low- ug/dL- Reference 131 - 425 Iron, Serum- 209 High- ug/dL- Reference 27 - 159 Iron Saturation- 66 High- %- Reference 15 - 55 Looks like I have Hemochromatosis? I am not taking any iron and haven't for...
  2. J

    Losing weight easily

    I will gladly take your donation! I would say my appetite is mostly normal and I rarely have nausea or stomach discomfort. I was tested for gluten and that was fine too. It's very puzzling. I'm starting to think the only solution is literally eating constantly which obviously isn't realistic.
  3. J

    Losing weight easily

    I've never had a stool test,I wonder if it could be that I have malabsorption. My brother is also very skinny, even more than me, so it could be genetic... I definitely don't think it's a good thing either. It's very frustrating. I can always tell when I've lost weight as I start feeling...
  4. J

    Losing weight easily

    This doesn't seem to be a common symptom and I'm wondering if there is another cause besides fast metabolism? I am not underweight but I would just like to be less skinny. However, it is so hard for me to gain weight and keep it on. I can gain a couple pounds but usually within a week I lose...
  5. J

    It's worth living like this?

    I saw a beautiful Monarch butterfly this morning and it filled me with hope and renewal. It was feeding on some flowers we have outside and lingered for a while. I think it was a sign to keep going/ reassurance. Maybe symbolic of my need to make changes in my life to be happier. I haven't...
  6. J

    mental performance

    It's one of the worst symptoms in my book. I often have to read things 2-3 times to be able to comprehend it, and I take longer to comprehend what someone is saying to me. It feels like my brain is running on slow speed. I've blanked in the middle of a conversation before, short term memory...
  7. J

    Did you have any problem with aerobic exercise before becoming ill? Like childhood?

    My fast-twitch muscle fibers likely do not have the alpha-actinin-3 protein, according to 23andMe. Our muscles are made up of two main types of muscle fibers: "fast-twitch" and "slow-twitch." Exercise performance may, in part, be due to individual differences in muscle composition. Endurance...
  8. J

    How to avoid getting worse

    I'm not sure, I've had a progressive worsening the whole time I've had it. Now rather suddenly I feeling much worse so I'm going to get checked out to see if there's something else going on. Just feels like I might be missing something, or it's something new, who knows...
  9. J

    Interesting Recovery Story that doesn't involve Antivirals

    They mention cortisol, mine was high in several blood tests, although I know saliva is more accurate. My doctor didn't advise any type of treatment for it. Cortisol dis-regulation makes sense for why I and many of us feel awful in the morning and somewhat better in the late evening. So I'm...
  10. J

    Did you have any problem with aerobic exercise before becoming ill? Like childhood?

    Yes, I was very active as a child but seemed to have lower stamina than others with some things. I was not a good runner at all. When I ran the mile in school I was always one of the last to finish. I did do gymnastics for 10 years which is very physically exerting, but the exertion is more...
  11. J

    Iodine supplementation

    @Jigsaw The breakouts are frustrating but I'm going to count it on some kind of detox or healing and wait it out. But there are a couple of natural supplements for hormone balancing that I want to try. I also have very oily skin which is a sign of high testosterone. My hormones tested fine...
  12. J

    Iodine supplementation

    I have started taking Lugol's Iodine a little less than a month ago. I ramped up pretty quickly starting at 50 mg, and just a few days ago started 100 mg. I pulse dose 5 days on, 2 off. I was deficient in Iodine in a blood test, and I also have thyroid issues- high reverse T3. Taking T3...
  13. J

    Comment by 'jlynx' in 'I cannot buy a guinea pig'

    I know this is a metaphor and it's beautifully written and expressed. I actually have two guinea pigs and they make amazing pets and I love them to death. They are my little therapy animals, keeping me company during the monotonous days lying or sitting in bed. They are not too hard for me...
    • jlynx
    • Blog entry comment
  14. J

    Dating...

    I am 24 and don't plan to date for the foreseeable future. My 4 year relationship ended in April of this year because of his own reasons that had nothing to do with me. My heart was broken because it was unexpected and very upsetting, but I don't need to go into it. It was nice because he was...
  15. J

    CFS and Lyme? Not sure of anything. Help.

    I had Lyme when I was five years old, so it was a question of whether it was reactivated Lyme or not. I did three months of oral abx and four different doses of LDI shots, with zero improvement. So I don't think it's Lyme for me. I also don't have joint pain which is a common symptom...
  16. J

    Overwhelmed and discouraged after doctor visit

    I don't think I believe this, personally. I think my previous doctor there could have been more proactive with trying different things instead of some appointments feeling pointless where he didn't even suggest new things. It was me who was bringing up new stuff to try all the time. But he...
  17. J

    Overwhelmed and discouraged after doctor visit

    True, or they give up and stop going, or have to stop going or go somewhere else for financial or other reasons.
  18. J

    Overwhelmed and discouraged after doctor visit

    EBV, HHV-6 (have), Parvo (have), CMV- I think everything. I did three months of abx and didn't improve. The clinic I go to is a Holtorf clinic so she should be pretty well-read in CFS. Which is why I was surprised to hear her say I'm the only patient she can't figure out.
  19. J

    Overwhelmed and discouraged after doctor visit

    I have not been tested for it. The good thing is she approved the Mestinon and I started taking it today. It's often used as a treatment for POTS so if I have it, it could possibly help. I also get dehydrated very easily and need to be drinking water constantly.
  20. J

    Overwhelmed and discouraged after doctor visit

    Wow I am so sorry to hear that. I had a really bad experience where I was not able to hold it back after a doctor completely spoke down to me and said I was doing everything wrong pretty much and the doctor that was helping me was scamming me. Some of these doctors are unbelievable. It's...
  21. J

    Overwhelmed and discouraged after doctor visit

    You're right, and I've accepted that there's no cure (yet) and no one solution that will bring me back to 100%. All I'm looking for at this point is something to help even the tiniest amount with any symptom. I think that's possible. But I don't respond to anything. And if I do, any...
  22. J

    Overwhelmed and discouraged after doctor visit

    It may have been a little under five minutes, it was a short wait. But other times it's definitely been longer than that.
  23. J

    Overwhelmed and discouraged after doctor visit

    Oh no I'm sorry, I meant her comments were discouraging! Sorry for the confusion, I'm bad at articulating sometimes. I almost started crying from frustration after she said that but thankfully I held it together. Even though there are some things I don't like about her I think I will stick...
  24. J

    Overwhelmed and discouraged after doctor visit

    I take vitamin D, C, Potassium, Magnesium, B-Complex, Cat's Claw, Omega 3, zinc, Adrenal support, T3. Nothing new recently. I do have mild anxiety so I wonder if it could simply be from that. Driving and going to appointments stress me out and give me anxiety. I agree with having to 'be...
  25. J

    Overwhelmed and discouraged after doctor visit

    That's what I figured... Probably not even worth seeing a regular doctor about. Thank you!
  26. J

    Overwhelmed and discouraged after doctor visit

    Yes, I know no doctor is perfect but I don't appreciate discouraging comments. She acts like we've tried every single thing, which we haven't, and I don't want to give up until we do. She said something similar the last visit too along the lines of "I don't want to give up on you but I'm...
  27. J

    Overwhelmed and discouraged after doctor visit

    I had another rather disappointing doctor appointment today... I've been through the ringer and have tried most things but my doctor said she is basically stumped and doesn't know what else to try. She said I'm the ONLY patient at their clinic who has failed to have some improvement by now...
  28. J

    Trying t3 only thyroid treatment...who's been there?

    I started lower, but I'm going to ask my doc about increasing. I've read about people doing well on 100 MCG or even higher on compounded T3. I'm also going to ask about trying low dose Cortef. Hope you find the right treatment soon!
  29. J

    Trying t3 only thyroid treatment...who's been there?

    I take 30 mcg compounded T3. No difference in symptoms, hair thinning never stopped.
  30. J

    Swollen eyelids

    I have a relatively new symptom that started over several months ago, where my upper eyelids are constantly swollen. It appears as if there is fluid above the eyelid and they are drooping over. I am only 23, it cannot be from aging. But my eyes look old and terrible. I don't have any...