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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. S

    Has Anyone Seen Dr. Kogelnik?

    I posted earlier in this thread a couple years back as a patient of Dr. K. I'm preparing for my first appt. with him in over 2 years and was wondering what's new with Dr. K & his Rituxan trials or any other info. someone might have who has seen him recently.
  2. S

    Dec 20th: High Noon for Ampligen! FDA Advisory Committee Decides Ampligens fate in live webcast

    Kaboom! :(
  3. S

    Make Room on Your Calendar 20 Dec for the Live Webcast of the FDA Ampligen Hearing

    Excellent overview Cort, will be following this closely come Thursday. I know Dr. Kogelnik (as a patient, seen him a few times) and hope his 50% guesstimation of Ampligen FDA approval is on the low side.
  4. S

    Increasing Famvir Dose

    I appreciate the update, I've been following this thread. Glad you are feeling better. Taking care of my sinus problems (somewhat) is the only thing that has helped me over 4 years. I'm also considering starting famvir, doing all the research I can, never been on an AV before.
  5. S

    My Experience with Famvir (anti-viral)

    Thanks for the report. keep us updated. I'm considering starting famvir myself. Would also be nice if you gave us some background info. on your CFS history.
  6. S

    Has Anyone Seen Dr. Kogelnik?

    I've exchanged around many emails (over 20) with Dr. Kogelnik over the months, sometimes he's taken a week or so to reply but he always has gotten back to me. I've only called the office two or three times and once he took my call while he was on a conference call. He's also phoned in...
  7. S

    Started Valcyte

    Best of luck on the Valcyte! Keep us posted! FWIW-My MRI scan was normal as well.
  8. S

    Report on Dr. Jose Montoya's talk at Stanford on March 3, 2011

    Thanks for going & reporting back Rich. Had I known about this event I would have attempted to go myself as I'm not that far from Stanford. The Video is up (thx for the link) much sooner than I expected, time to watch now...
  9. S

    Vitamin D and Increase in Symptoms

    I believe Vit. D was causing this deep, burning, painful sensation in both of my thigh muscles. I could barely walk around the house. I started Vit. D about 2 weeks, ago & since I stopped taking it 3 days ago 90% of the pain is gone. I was taking alot 5,000 IU (D3) most days as I was rather...
  10. S

    Has Anyone Seen Dr. Kogelnik?

    Thanks for the name of the company, I didn't know the name or the connection with the HHV-6 Foundation. I was just looking at their website to find out more about valomaciclovir. Dr. Kogelnik said it would likely be a shorter course with fewer side effects than Valcyte. For myself, he...
  11. S

    Has Anyone Seen Dr. Kogelnik?

    I'm a patient of Dr. Kogelnik's. Julie did an excellent write up describing him & his co-infection theory. I wish had brought my recorder along with me as he covers alot during your hour consultation. On my first visit he wrote up lots of lab work focusing on EBV/HHV viruses, and many...
  12. S

    Azithromycin for my Mycoplasma Infection; Should I Stop?

    Original Content Gone, Please delete Mod. Deleted my original post, please delete mod.