Blog entries from Xandoff

Xandoff has a total of 21 entries.

  1. Xandoff
    I just tested positive for Lyme disease and it's co-infection babesia on 12/24/2013 through IGENEX in Palo Alto California. Babesia with Lyme explains my severe chronic pain I have had for 12 years. Most of the people on PR don't have the kind of pain that I have. I also have Neuro-Lyme which causes depression and rage. This has made it twice as difficult to navigate our broken medical system....
    Xandoff, Jan 5, 2014
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    Xandoff, Apr 22, 2013
  3. Xandoff
    “Why not go out on a limb? That's where the fruit is.” ― Will Rogers It seems PR does not want a specific Pain Forum in spite of the fact that FIVE out of SEVEN diagnostic criteria used for this illness spell out pain as a primary complaint. Can anybody, moderators, peeps, folks tell me any good reasons NOT TO HAVE A PAIN FORUM at PR? If you surf through all the topics and conversations...
    Xandoff, Apr 8, 2013
  4. Xandoff
    This is a video for all of you out those out there dealing with pain and ME. Please like this post is you think PR needs a Pain forum! [media]
    Xandoff, Apr 2, 2013
  5. Xandoff
    I recently read that FIVE out of SEVEN diagnostic criteria outlining ME CFS include PAIN. It boggles my imagination that Phoenix Rising Forums do not address PAIN. We still have XMRV in the forum section, but not PAIN. I think this is a problem that Phoenix Rising should address. I think this is a priority. Although I tested positive for the lab contaminant XMRV, I don't think we even need...
    Xandoff, Apr 1, 2013
  6. Xandoff
    I am just curious as to how many people get a flu shot who have ME CFS. I haven't had a cold in eight years and I think the last time I got a flu shot before I knew what I had and it made me crash. What is anybody's experience with Flu shots out. I believe my immune system is too shot to deal with a shot. When I tell my local non ME CFS GP that I don't want a FLU shot I get the eye roll....
    Xandoff, Jan 13, 2013
  7. Xandoff
    VITAMIN D3 is very important to take while using GcMAF from I spoke with my Doctor and David Noakes from Immuno Bio Tech ( and he says it is very important to continue your supplement of D-3. I was confused by reading many posts that discouraged taking GcMAF from with Vitamin D-3. Also I would like to say that Immuno Bio Tech and David Noakes are fantastic...
    Xandoff, Jan 9, 2013
  8. Xandoff;15;E677-E686.pdf Pain in Patients with Chronic Fatigue Syndrome: Time for Specific Pain Treatment?
    Xandoff, Oct 17, 2012
  9. Xandoff
    To all of those with ME CFS who suffer with chronic and severe pain that is not adequately controlled due to a variety of complex issues. We suffer everyday. Everyday that we get up, we hear the proverbial radio alarm pronouncing it is once again Ground Hog day with Sonny & Cher singing "The Beat Goes On". (American Movie reference starring Bill Murray, who is trapped to repeat Ground Hog Day...
    Xandoff, Oct 17, 2012
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  11. Xandoff
    Hi All, How would everyone feel about creating a new Forum just for managing pain under the Forum category for Treatment & Therapy. I know that we all deal with pain and some of us deal with co-morbid mechanical pain that is amplified by our brain. (my theory) I understand that we don't want to clutter things up but I feel this is a very important topic. Dealing with chronic pain is a...
    Xandoff, Aug 6, 2012
  12. Xandoff
    Hi All, Has anyone used a Oxygen and Saline infusion for chronic pain? It seems intuitive to me that this would be helpful for my chronic pain. Any advice or experiences would be appreciated. I think my CFS ME specialist who I see every four months (360 mile round trip) would consider giving me an infusion if I had the details. Currently taking GcMAF.
    Xandoff, Aug 2, 2012
  13. Xandoff
    [media] Peter Gabriel Don't Give Up lyrics Songwriters: Hyler, Tamara Janine / Smith, Shaye / Ebert, Alexis In this proud land we grew up strong We were wanted all along I was taught to fight, taught to win I never thought I could fail No fight left or so it seems I am a man whose dreams have all deserted I've changed my face, I've changed my name But no one wants you when you lose...
    Xandoff, Jun 2, 2012
  14. Xandoff
    Lurkers, members and my fellow Brothers and Sisters. I have been in uber pain for 9 years now. Never found a pain clinic clinic that wasn't some kind of inept money mill. Have done the works with Docs who didn't understand my illness and one who does. Acupuncture helps but who can afford it? Opiates ....although they make me feel like I did before I was ill they don't work over time. I balked...
    Xandoff, May 31, 2012
  15. Xandoff
    Does anybody know how I can get a copy of the NJ proclamation to post on my Facebook page? It also says that CFS is also called Myalgic Encephalomyelitis. I can't seem to cut and paste the document that NJCFSA sent me. Any help would be greatly appreciated.
    Xandoff, May 2, 2012