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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. scienceshea

    Blood pressure spikes

    Well...my BP started getting high along the same time I first started experiencing symptoms, prior to which it had always been low. Then I started having spikes in BP 2-3 years ago. I’d been pretty good, then I checked this thread, and this week it’s been spiking again. So thanks for that 😉...
  2. scienceshea

    Who else here is in their 20's?

    31 now - but started dealing with this just before my 29th birthday.
  3. scienceshea

    Twitching- help

    Hey Joe, Just to offer some consolation, I'm right there with you. Twitching was my first symptom that brought about noticeable concern, mine started as an eye twitch that lasted a few weeks but then seemed to start moving around to my arms, legs, and low back. Early on it was much worse and...
  4. scienceshea

    What labs to do before starting IVIG/Rituximab?

    I have been mostly away from PR throughout the summer, but I thought of you and your son at times, and this made me SOOOOO happy to read. Sending positivity your way!
  5. scienceshea

    Breathing issues?

    Based on other anecdotal stories that I've read, I would lean toward yes. From personal experience, my recent air hunger/breathing issues seemed to arise along with several GI symptoms.
  6. scienceshea

    Life threateningly sick... what can I do?? (aldosterone, adrenaline, food allergies, etc)

    From my understanding, it depends on the abnormality but generally it indicates an adrenal issue that would warrant investigation by an endocrinologist. My results were suggestive of a possible pheochromocytoma, which after two imaging tests has since been ruled out. I am now not any closer to...
  7. scienceshea

    Sleep dr doesn't get it

    I mentioned my increased EBV titers to my endo and she looked at me and said, "So what does that mean?" Ummm...I don't know....I was hoping you could tell me?? She then proceeded to tell me that sleep apnea may be causing my symptoms even though I've been on CPAP for 5 months...
  8. scienceshea

    Life threateningly sick... what can I do?? (aldosterone, adrenaline, food allergies, etc)

    Sorry to hear about everything you have going on. I share a number of these symptoms and know how intolerable they can be. How is your blood pressure? Have you had a 24-hour urine test done? If not, you might want to consider a 24-hour fractioned catecholamine test, which if off would warrant a...
  9. scienceshea

    Dreaming?

    I used to dream, then as I got sick stopped having any sort of memorable dreams. I was diagnosed with mild sleep apnea and have started CPAP therapy with the only noticeable change being that I've started having dreams again. I can't always recall them, but this is sort of how it was before I...
  10. scienceshea

    Blood pressure spikes

    I completely know what you mean! Especially when hypertension isn't exactly a common symptom of CFS, many reporting low BP. I'll try and keep you updated as I work to find something to help control my BP.
  11. scienceshea

    Are you totally convinced you have CFS?

    I haven't really gotten a clear answer on this - the doctor's interpretation of my results were suggestive of a recent infection rather than current since I had normal values for EBV EA, however all of my titers were increased from testing that was done a few months earlier without any...
  12. scienceshea

    Are you totally convinced you have CFS?

    Great question - as this is something that runs through my head often. I personally view CFS as a syndrome (a group of associated symptoms) and in that sense I definitely suffer from CFS, but I am still looking for a more specific/treatable diagnosis and believe there is likely something that...
  13. scienceshea

    Blood pressure spikes

    Similar to the OP my BP was normal (around 120/70) when I was healthy. Around the onset of my other symptoms I also developed high blood pressure which fluctuates without any significant triggers. Now I typically am around ~150/90 but can be as low as 120/80 or as high as 170/95 at times...
  14. scienceshea

    What viruses do I need to test for?

    I'm by no means the most informed but some viral tests that I've seen suggested are: Cytomegalovirus (CMV) Herpes Simplex 1 & 2 (HSV1 & HSV2) Herpesvirus 6 (HHV6) Lyme Coinfections (Bartonella, Babesia, etc.) Enterovirus & Echovirus Panels (@Hip seems to be much more informed on Enterovirus and...
  15. scienceshea

    Positive EBV VCA-IgM for at least six months. false positive?

    @rodgergrummidge Thank you for this excellent and extremely clear response!
  16. scienceshea

    EBV results and interpretation

    I thought I might share my EBV results as I still haven't met with my dr to see if anyone can offer any incite.... EBV VCA IGM - 78.60 H < 36.00 U /mL negative 36.00 - 43.99 Equivocal > 43.99 Positive EBV VCA IGG - 194.00 H < 18.00 U/mL Negative 18.00 - 21.99 Equivocal >21.99 Positive EBV...
  17. scienceshea

    Positive EBV VCA-IgM for at least six months. false positive?

    Would anyone be able to offer some incite to these results? EBV VCA IGM - 78.60 H < 36.00 U /mL negative 36.00 - 43.99 Equivocal > 43.99 Positive EBV VCA IGG - 194.00 H < 18.00 U/mL Negative 18.00 - 21.99 Equivocal >21.99 Positive EBV EBNA IGG -...
  18. scienceshea

    Introduce Yourself

    Hello and welcome, I don’t have much guidance to offer other than I am also a 30 year old male with a similar history to yours. I have low normal testosterone but also have had chronically low vitamin d. Hope you can find some help here as there are many people that are much more well informed...
  19. scienceshea

    Need help with Treatment

    I would suggest looking for a doctor who specializes in integrative or functional medicine. Hopefully someone can help you that is more familiar with local docs.
  20. scienceshea

    chronic throat clearing?

    Bringing up an old one - I was wondering if anyone else has had chronic throat clearing as an issue? My father-in-law was suffering CFS like symptoms that seemed to be suddenly onset and became progressively worse over several months before he was diagnosed with idiopathic CKD. He is being...
  21. scienceshea

    How to cure Candida in someone with stage 3 kidney disease

    How are things going @sk123 ? Has your mother taken the EPO shot? I wouldn’t necessarily be overly concerned with Candida overgrowth unless this is specifically addressed by a doctor, the symptoms listed online in regards to candida tend to be very generalized and can be attributed to a number...
  22. scienceshea

    Things that show up in your lab results

    So far... Low Vitamin D, 25-OH, - on three separate tests. (20,21, and 22) Low Total testosterone - was still in range but pointed out that it was very low for someone my age. Slightly elevated out of range metanephrine, normatinepherine, and creatinine on 24 hr urine test. Slightly low but...
  23. scienceshea

    Men's experiences with ME/CFS

    To answer your first post - I’d say this quote is mostly what drives me. There are many days where I come home and crash out on the couch getting little to nothing done. On the days where I come home and DO still have energy I will usually try and get some things done to make up for the days I...
  24. scienceshea

    Men's experiences with ME/CFS

    Although undiagnosed I struggle with similar challenges. Any type of house work tends to take most of my energy (I still work full time and I can usually accomplish one solid home task each day). I am just turning 30 and have been married two years and we keep discussing having kids. We both...
  25. scienceshea

    Did you have a vaccination not long before developing ME/CFS?

    Although I haven’t been officially diagnosed with CFSME I believe my symptoms started to become significantly noticeable/worrisome just after a Tetanus booster. Tried discussing a possible relationship with my PCP and was immediately dismissed. I feel like my symptoms may have started prior...