• 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.

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Search results

  1. Sancar

    Blood clots continue to wreak havoc for patients with severe COVID-19

    :music:@Treeman @SWAlexander ~ Thank you both for this IMPORTANT information!!! Blood clots are tricky. In this day Pademic hysteria, it all too easy for a Doctor to “brush it off” and not bother to look for “clotting issues”. I have had a small knot in my calf since a bad accident/fall 11/2020...
  2. Sancar

    Namenda (Memantine)

  3. Sancar

    Truth about Adrenal Fatigue

    Hi Drb31 ~ i hope youre doing well! I came across this thread and wondered if you are still taking cerebrolysin? If so how has it worked for you? Thanks very much:star::bouquet:
  4. Sancar

    General Survey re: Anti-virals

    @heapsreal - :balloons: Hi There, How r u doing these days? Did you ever “try or buy” any of products f om a Russian pharma? Im particularly interested in Thymalin?~ I see its been around a while, yet i havent come across any posts as to its effectiveness regarding a bacterial or virial load as...
  5. Sancar

    Article Risk Factors for Suicide in People with Myalgic Encephalomyelitis

    Where does a person go to, or call when they need such care and treatment. Especially when they have no one to listen or care... I too appreciate the work Dr. Jason is doing. How many have and will die by finally calling it quits out of pain, exhaustion and despair? Is there a place to go to?
  6. Sancar

    High-Dose Selenium Significantly Improves My Fatigue and Brain Fog

    @ugelov :cool:Hello Uglov ! First of all Thank you for your continued supply of helpful information to the forum! I suffer w Coxsackie BV. I have tried selenium in the past 200 mg or mcg? 2x a day for 2-3 months w/o nitice of any change. HOWEVER I TRULY would APPRECIATE knowing what brand...
  7. Sancar

    Low dose Naltrexone

    PRICING? Does anyone know of a compound pharmacy that is competitively priced? The pharmacy I have been using is getting higher & higher with each order. I order 3 months at a time to save $$ ~ THANKS!
  8. Sancar

    Low dose Naltrexone

    @nryanh94 _ In earlier threads posted there was a Pharmacy I think mentioned in Utah that would provide a Doctors consult for a fee then prescribe. I hope you find a Doctor soon. Especially if it really helps you. You need to stay on it. Keep going t hough threads and the LDN website. All the best!
  9. Sancar

    Experience with antibiotics

    @nryanh94 ~ It would be beneficial for you to look in “alternative diagnoses” section- Myself I’ve been bitten by a tick 3 times that I know of. I have photos to back it up plus the tick. That being said- you may hav other symptoms that your Dr feels antibiotics would help. Did you inquire as...
  10. Sancar

    How I found the underlying cause of my CFS--anti NMDA antibodies

    !? Yes ‘vision blue’ WHERE is the thred to this information posted ~ Yet another sorrow for all of us ~ An informative synopsis would be ‘Greatly’ appreciated..... As long as it does not offend family or close friends...
  11. Sancar

    Anyone tried ketamine?

    @Sushi :music: Thank ,you for that information. Interesting how the application was for anxiety basically. Something I deal with for no apparent reason. I attribute my anxiety to my “nerve” issues which go on unresolved. @RYO ? How are you doing with the Ketamine parches? Are they helping? Any...
  12. Sancar

    ARTICLE, by SelfHacked -- Brain Fog: The Hidden Causes and How to Fix It

    @Wayne :thumbsup: Well presented article! Thank you~ I love being in the Sun~ I have since I was a kid. Now I have to be very careful no more than 20 minutes a few times a week. I now get what I refer to to PEM from too much sun~ it will really wipe me out~ so hats, long sleeves and umbrellas~...
  13. Sancar

    Task related cerebral blood flow changes of patients with chronic fatigue syndrome: an arterial spin

    @hamsterman ~ I completely agree with you! I have had FM symptoms for decades, however the “Mental Malise” that comes with ME was the turning point for me. My brain crashed, something snapped. Like you I completely enjoyed long term planning. It’s was my career to budget and plan out...
  14. Sancar

    Task related cerebral blood flow changes of patients with chronic fatigue syndrome: an arterial spin

  15. Sancar

    PEM/PENE differences

    Hi & hey ljimbo423~ What a great ‘key to find’ that high dose coq10 does that much to help your mito creation! ? What form/brand do you take or find helpful? I would appreciate knowing! :redface: I take Qunol 100mg for cardio benefits. I don’t see any ME relief? 4,600mg is a ‘Whopper’! No side...
  16. Sancar

    7 Day NAD+ Infusions (Severe ME/CFS Recovery, Neurological / Mitochondrial / Genetic Repair) + POLL

    Hey Jesse2233 ~ Where & what lab test will you have run in order to “test for NAD+ serum levels”? Which Dr will order the test for you. I presume you will run this through your insurance? I hope so! Thanks for the info! :thumbsup:
  17. Sancar

    Intense Flare

    @the_phscale ~ How r you doing now? Are you still on antibiotics and or herb protocol? Are you past the “flare” you mentioned? I hope so! Please keep us posted.. Be welll :music:
  18. Sancar

    NAD+ Is a Food Component That Promotes Exit from Dauer Diapause

  19. Sancar

    Ohio State neurology

    @.jm. AWSOME!!! What a great outcome*!*!!!! Now - what’s next!
  20. Sancar

    Dealing with Cold Feet

    Hi @RebeccaRe ~ I’ve suffered with ‘cold freezing feet’ it seems like forever. Since Me/CFS much worse. This is what had helped me: Hot Epsom Salt baths, or at least foot bath. The magesium soaks through your skin. Rubbing your feet while soaking is beneficial. Niacin - good for circulation...
  21. Sancar

    Enteroviruses - revisited

    :music: Hi @mrmichaelfreedmen ~ May you ask where your compound pharmacy is? I would really appreciate being able to access those supplements myself. Over 20 years ago (or more) I had Naturepath recommend Quercetin to me when I was ‘rigorously traveling’ for work. It was to help prevent and...
  22. Sancar

    Live stream Jan 18th Dr Montoya: An Unfolding Story of Scientific Discoveries and Future Targe

    @Sushi ~ Thank you! Will you please post (and tag me:rolleyes:) when you know when, where & how this will be available? Again thanks~~~
  23. Sancar

    Probiotic/Digestive enzyme reccomendations

    Jarrow - Saccharomyes Boulardii+MOS It was recommended to me by a CFS specialist regarding ‘leaky gut’ isuues. Each of us has a different set of “Gut Isuues” due to food and chemical tolerances. That being said you may need to try a few different Probiotics out before you find one that suits...
  24. Sancar

    Any one feel worse with Inositol?

    Hi @Lipac ~ I myself have felt better. I statrted taking ‘Cell Forte’ by Enzymatic about a year ago. It contains 880mg of Inositol as well as some Magnesiums. It was gradual but I have noticed a a difference in my physical stamina. Especially my ability to “get out of bed” in the morning. I have...
  25. Sancar

    Seeing Dr John Chia on Friday, What Questions Should I Ask?

    Great ?s ~ A ? For you ~ how r you doing? Still on IVIG? Is that helping? Did you discuss the Zithromax or Rifaxim with Dr Chia? Have you ever discussed Lamivudine with him? ~ So glad to hear the HBOT is giving you relief. I truly believe our bodies/cells are starved for Oxygen. It is common...
  26. Sancar

    Careful Recumbent Exercise as Therapy for POTS vs ME/CFS - Unraveling the Contradiction + POLL

    @Diwi9 ~ Thank you! Great info
  27. Sancar

    Careful Recumbent Exercise as Therapy for POTS vs ME/CFS - Unraveling the Contradiction + POLL

    Hi @Diwi9 ~ I would also appreciate seeing this webinar! I was diagnosed with Dysautonomia at Clevalnd Clinc in 2011. So much information has been revealed since then. It has always had a relationship with POTS. If you do find it will you please tag me so I may view it as well?:cool:Thank you
  28. Sancar

    Map of US Based ME/CFS, POTS, and Lyme Doctors (Feedback Please!)

    Thank you Hip!
  29. Sancar

    Enteroviruses - revisited

    Hi@filtza ~ I too was told to start at 1 a day for r a week then 2 a day by dr c. It has made a difference in my physical stamina. Not to the degree of Never Give Up’s account, but it has helped. I’ve got only been taking it about 5 weeks. I think it will get better- I hope!
  30. Sancar

    Tuller / Undark: CDC Removes Reference to Disputed ME/CFS Therapies From Website

    Wikipedia!?! ~ Anyone tried an attempt to correct thier misrepresentation of our illness. Let's face it millions go to that website as a 'go to' for answers. GET and all the the other damaging rhetoric is stated there just as is was on the CDC's website. I don't know how to address it. Perhaps...