• 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.

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

Search results

  1. L

    COMT and reaction to methylation and b vitamins

    I know you posted this a few weeks ago, but I'm assuming having all these mutations is a bit of a rarity so...I have all 4 of the homozygous mutations you refer to (both COMT, MAOA, and MTHFR C677T) I'm just starting to look at methylation issues so I don't have a lot to report but this: I can...
  2. L

    Help figuring out methylation? - Need to take an antibiotic and can't tolerate any

    Nope no thyroid meds. Nothing daily at all except vitamins and probiotics. I have considered colloidal silver - I got some to use as a sinus rinse but then got a antibiotic rinse instead and figured it was a safer bet. Unfortunately my infected sinuses are swollen shut so I need something...
  3. L

    Help figuring out methylation? - Need to take an antibiotic and can't tolerate any

    @Valentijn wow thanks great information! I don't know if I like being the only one you've seen with both mutations...but at least it means I have plenty to address! Can you help explain a couple of things to be? I have quitea high B12 blood level - I was supplementing and my doctor told me...
  4. L

    Need to take an antibiotic but can't tolerate anything - help?

    Thanks everyone! This happens despite taking large amounts of probiotics, although I do suspect I have some gut issues. I definitely may have to try olive leaf - I have some in my cabinet. Haven't tried it before out fear of reaction - but can't be worse than this! I don't know the cause of...
  5. L

    Help figuring out methylation? - Need to take an antibiotic and can't tolerate any

    Wow, ahmo, thanks, wonderful information!! Regarding the histamine issue...is MAO++ potentially connected to a mast cell disorder? I ask because I have POTS (actually my primary diagnosis, ME/CFS is more questionable) and I know there's a big overlap between POTS and mast cell issues. Can...
  6. L

    Need to take an antibiotic but can't tolerate anything - help?

    Fairly sure it's bacterial because I've had it for 3 weeks and it keeps getting better and worse. A nasal culture came back for "standard skin bacteria", whatever that means, meaning my treatment options are pretty wide open. Thank you!
  7. L

    Need to take an antibiotic but can't tolerate anything - help?

    I posted a similar question in the Detox forum, so I apologize if you're sort of reading this twice... I've been sick for almost 2 years and haven't been able to tolerate most medication since then. I had some success with improvement through lifestyle and natural remedies so I didn't address...
  8. L

    Help figuring out methylation? - Need to take an antibiotic and can't tolerate any

    Hi everyone! I have a kind of urgent request for help figuring out methylation. I've been sick for almost 2 years and haven't been able to tolerate most medication since then. I had some success with improvement through lifestyle and natural remedies so I didn't address it...but now I have a...
  9. L

    What lab tests to find cause of chronic lymph node activation?

    I have the same problem, although I've only been sick for a year. Enlarged lymph nodes can be enlarged due to either malignancy or "reactive" changes (usually infection or more rarely autoimmune issues). It's also possible to have something called "shotty lymph nodes" after a viral infection -...
  10. L

    Haemochromatosis - have you got this in your family?

    I have double genes for it, so I guess I have it, but I'm asymptomatic (I'm a 23 year old female so that would be rare anyway). I found out a year before I got sick - my iron level was out of range even though I was a young female vegetarian who didn't take iron supplements, then I found out...
  11. L

    Your typical heart rate (pulse)

    Mine is in the 50s, sometimes dropping into the 40s. I have pretty severe POTS so I actually have a huge range of heart rates - can go up 100 points within a couple minutes of standing. I think it's more common to have a high resting HR with POTS so I'm kind of an oddity. And obviously I can...
  12. L

    Where to get Imunovir/Isoprinosine?

    I live in America and am wondering how I can order Imunovir. My doctor is willing to write a prescription, but has never prescribed it before and we don't know how to order it. I suppose I would prefer to order it through an actual Canadian pharmacy or something, rather than a random website...
  13. L

    Does Your POTS or HR vary by time of day?

    My HR is definitely higher in the morning. I can barely tolerate being upright for more than a couple minutes for the first few hours of each day. The difference used to be very noticeable - HR above 130 in the morning, and around 100 at night (and feeling almost normal!). Unfortunately I've...
  14. L

    "Fatigue" or not fatigue - that is the question...

    It's funny that you posted this because I've been thinking the exact same thing the last few days. I've been getting a lot worse over the last few months (probably because I was initially diagnosed with just POTS and told to exercise a lot and of course that backfired) and have had to spend...
  15. L

    Insanely High HHV6 Level

    Thanks again for all the info! Yes, I do have a binder full of all my tests in chronological order. I looked at the most recent version of the things you mentioned and they both look good. How else can I find little things like this to look for, just by looking through this forum? Also, I...
  16. L

    Insanely High HHV6 Level

    Thanks for the info about the ELISA test, that makes me feel a bit better. Then would you recommend I ask for a titer now so I have a way of tracking my progress on antivirals? I had a lot of testing done and everything has been normal until now. CBC, metabolic panel, CRP, Sed rate, ANA + a...
  17. L

    Insanely High HHV6 Level

    Oh wow, I just noticed how many responses there are here, thank you all so much for the information! I spoke to a nurse and she said the doctor wants me to try Valtrex first because it's mild and in some patients it helps with HHV 6. Would I be better off trying Famvir? Because I'm not...
  18. L

    Insanely High HHV6 Level

    Hi, I'm new here and this is my first post! I actually haven't been diagnosed with CFS (I don't have enough symptoms) but was just diagnosed with POTS. One of my doctors decided to do some viral testing because it seemed to be viral-onset and I still have swollen lymph nodes. Well, I just got...