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

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  1. GONZ0hunter

    Since we last met

    im sorry, I’ve failed a lot of people but I wish I could have been more here. I let a lot of the crew without my help. Things have sucked. I thought I had CFS and a few other diseases, my list has increased and I’ve barley survived 6 life ending situations. My disease and dr list is long...
  2. GONZ0hunter

    Please can TeamPR help child threatened with 'intensive inpatient treatment' for failing to recover

    I would use the media to force the hand of a govt official or hospital but that’s how I think. If the mom isn’t willing to help not much can be done
  3. GONZ0hunter

    Please can TeamPR help child threatened with 'intensive inpatient treatment' for failing to recover

    I forgot the question mark What, in one sentance, is the goal?
  4. GONZ0hunter

    Please can TeamPR help child threatened with 'intensive inpatient treatment' for failing to recover

    Cant help you their..well...i do know some people. The photos and 1 pager could be done today. Use the nicest phone shooting highest rez hdr and i can clean them up during my infusion tomorrow. I will be stuck in a room for 8 hours, If you do that i will contact the people i know. Ive...
  5. GONZ0hunter

    Please can TeamPR help child threatened with 'intensive inpatient treatment' for failing to recover

    So every day anchors and backpack journilist fill 22 minutes of news and you want to be 3 minutes but you have to be polished and 100% truthful and accurate with a flare of “think of the children”. Your child chould be this child, etc. Not to be cruel but your playing to the bleed it leads...
  6. GONZ0hunter

    Please can TeamPR help child threatened with 'intensive inpatient treatment' for failing to recover

    Build a drop box of stills and a 1 pager of who what when where etc. you may find a talent agent willing to spec help you. Google actors in your town and see who represents the big anchprs or field reportters
  7. GONZ0hunter

    Please can TeamPR help child threatened with 'intensive inpatient treatment' for failing to recover

    I read some of it. You should build a 1page story of the child and immediate need. Then you need photos and video that is done well. Rawish so a news crew can build a package. Google broll and shoot interviews with drs or who ever you consider and expert. Remeber an expert here isnt one...
  8. GONZ0hunter

    Please can TeamPR help child threatened with 'intensive inpatient treatment' for failing to recover

    Hmm not uk though more us.
  9. GONZ0hunter

    Please can TeamPR help child threatened with 'intensive inpatient treatment' for failing to recover

    I am well versed in pr.
  10. GONZ0hunter

    Disappointing Mayo Clinic Treatment

    I would assume you could
  11. GONZ0hunter

    Disappointing Mayo Clinic Treatment

    its big leap from giant marble walls and nice open facilities, but sigh. Im all for capitilism but I also think their is a line that they have crossed. I don't care if you can't see it.
  12. GONZ0hunter

    Disappointing Mayo Clinic Treatment

    Not for profit means they don't give shareholders profit. And I understand having nice facilities because I won't go to a hospital or dr who doesnt take care of and have nice facilities,
  13. GONZ0hunter

    Disappointing Mayo Clinic Treatment

    No due to another disease
  14. GONZ0hunter

    Disappointing Mayo Clinic Treatment

    Whomever asked if the pain is comsant then yes it is. I have other factors that I can't discuss openly though due to,it being shown who I am as to the rarity of my disease.
  15. GONZ0hunter

    Disappointing Mayo Clinic Treatment

    And to be clear I pay for ivig treatment every 3 weeks plus retuxiban and plasmapharisia. So I get expensive treatment , but that should be helping not building a temple to their own greatness. Mayo is a joke.
  16. GONZ0hunter

    Disappointing Mayo Clinic Treatment

    I found it is a huge money boom. Everything centerened around taking money. Stay 8 weeks in a hotel . Walk through the gift shop. I know how to run a lean organization and the run rich. Anyone who says different I'm willing to discuss how they could save money to improve care.
  17. GONZ0hunter

    Disappointing Mayo Clinic Treatment

    Millions
  18. GONZ0hunter

    Mayo Clinic

    I have un-retractable muscle spasms. Tha musckes tear ligaments free, collapse lungs, rip organs free etc. I had a bad infection that morphed into a superbug. The hospital was able to knock it down with abx targeted for that infection via iv. I also have a weakened immune system diagnosed...
  19. GONZ0hunter

    Mayo Clinic

    I had stiffman prior to mayo. Neuro did have gad 65 plus eeg and I had results and a note prior to arriving. They didn't trust the eeg but didn't want to repeat it. All notes say "stiff man" . So they didn't take it serious. I already had ivig and to be honest have a much better team...
  20. GONZ0hunter

    Disappointing Mayo Clinic Treatment

    How many hallways were paved in marble and gold inlay at mayo? I saw priceless Chinese artifacts in one area. This marble is carved near me so I know how much they paid for 20 foot sections. Each.
  21. GONZ0hunter

    Mayo Clinic

    Hey, I just got Back from Mayo Clinic. I have stiff person syndrome cfs and a bunch of other symptoms. I have many symptoms and dr diagnosed diseases, and am ready for any questions you want to ask. AMA. My first statement is don't go unless you have a rare diagnosis where your dr doesn't...
  22. GONZ0hunter

    Holy crap -- IgM deficiency

    Any deficiency needs to have a vaccine challenge to prove if the system is actually not working correctly
  23. GONZ0hunter

    Fibro looks like it has got permanently worse....?

    Weird. I get swelling bad as well. The no pain meds route I have done Kinseo tape, myofacial injections, novicaine cream, and those all helped. To be honest opioid pain meds are all that really helped me greatly . Do you have a pain dr? Maybe Celebrex? NSAIDs are linked to heart attacks so...
  24. GONZ0hunter

    Comment by 'GONZ0hunter' in 'Sugery'

    Thanks it went not well. Ha
  25. GONZ0hunter

    Comment by 'GONZ0hunter' in 'Sugery'

    Thanks, it's scary
  26. Pre-op

    Pre-op

    We are starting pre-op today. The goal is to evacuate anything in my gi track. I stopped eating anything after midnight last night (sat night) I have been on clear liquids so far. My dr gave me one of theses to drink. I'm super nervous but my pcp gave me some meds to help. We are 12 hours...
  27. GONZ0hunter

    Sugery

    If you have read my other blogs you know I'm a pro when it comes to surgery. This one will be different. I have damage to my stomach. The actual organ. The goal of my sugery will be to cut out a section and sew it back together. They think I may have some damage to my intestines as well...
  28. GONZ0hunter

    NIH asking for public input about health tracking devices

    Watching ex machina right now. Totally derailing the conversation. Jupiter ascending is next up today.
  29. GONZ0hunter

    NIH asking for public input about health tracking devices

    Yes, love that movie.
  30. GONZ0hunter

    New Daily Persistent Headache, treatment and causes

    Here is what worked for me. 1. Astepro and Flonase helps somewhat, but not all the way. 2.finding a good ent to fix any structural issues. If you are in Colorado I know one. He will do a video scope of your sinuses at the visit and will give you a good, honest assessment. 3. Find a...