Forty-five of the 47 patients--a whopping 96 percent--registered cardiac diastolic dysfunction, the left ventricular abnormality Cheney has been reporting on for several years. In his poster, Cheney wrote that this heart problem is linked to ``cellular energy deficiency,'' which predisposes patients to orthostatic intolerance that's extraordinarily common in CFS patients. Common overlapping health problems in his study patients were chronic Lyme disease (31 percent), mold illness (26 percent), Multiple Chemical Sensitivities (43 percent) fibromyalgia (63 percent), irritable bowel syndrome (IBS) and inhalant allergies (71 percent).
Interestingly, only 8 percent of CFS patients with overlapping chronic Lyme and only 8 percent of patients with overlapping mold illness tested positive for XMRV--closer to the background rate of the positive XMRV studies.
Posted by Marrit (Member # 25454) on :
Note, only 8% of CFS patients with chronic Lyme tested positive for XMRV!
Perhaps these "chronic Lyme" cases are not Lyme at all but CFS. And it appears, based on these statistics, that most XMRV infections are just that: XMRV and NOT Lyme.
(Unless the XMRV test results are false.)
Posted by m0joey (Member # 13494) on :
This report is inaccurate. I have contacted Mindy myself to try to get her to edit her blog, but she has yet to respond.
The 31% overlapping lyme cases meant that 31% of XMRV+ patients ALSO had chronic lyme, not 31% of all 47 patients had chronic lyme; The 26% overlapping mold cases meant that 26% of XMRV+ patients ALSO had mold illness; not 26% of all 47 patients had mold illness; so on and so forth.
31% of 35=11 lyme patients with XMRV + 1 lyme patient without XMRV = 12 lyme patients total (which matches the 26% chronic lyme percentage he reported on one of his slides).
So the percentage calculations were indeed correct, the reporting was just inaccurate.
Obviously this changes one of the takeaways from her report from "most chronic lyme patients do not have XMRV" to "11 out of 12 lyme patients DO have XMRV and the one patient that didn't test for XMRV could have a false negative."
And obviously this means Dr. Cheney's findings don't conflict with his earlier statement that chronic lyme CANNOT exist independently of GRV (aka XMRV)
Posted by jarjar (Member # 8847) on :
mojoey I haven't read all the details of the study but are these patients that Dr.Cheney himself has determined have lyme problems?
I'm not so sure that Cheney would read a western blot like a true LLMD would. In other words I think Cheney has down played the prevalance of patience with CFS that have lyme also.
Just speculation on my part and I know you keep up with Cheney's work more then I do. I do know he has gone on record that the symptoms of CFS and Lyme are identical.
Posted by m0joey (Member # 13494) on :
I don't think so. In fact, Cheney shows a surprisingly balanced view of lyme testing. I'm pretty sure he uses western blot.
Posted by yanivnaced (Member # 13212) on :
Anybody try Cheney's Artesunate therapy? Seems to be attracting some attention.
Posted by lymednva (Member # 9098) on :
I knew a guy a year or two ago who moved from my area to NC and went to see Cheney. This guy had decided he didn't really have Lyme because he wasn't making progress after several months of treatment.
Cheney was not Lyme Literate at the time, or even Lyme friendly. Perhaps he has changed.
Posted by m0joey (Member # 13494) on :
Change is synonymous with Cheney. He is close with Dr. B, so that may be where gets most of his lyme info.
Many in the CFS community argue that his being quick to change his views/protocol is a negative, and certainly from a financial perspective it may be for patients that are invested in his recommended supplements, but in the long run I think it bodes well for patients to have a physician/researcher with such an elastic paradigm of our illness.
Not only is he now keen on lyme, but is big on mold, toxins (VOCs), etc, and combines a antipathogenic approach (he has used AVs, ABx, ampligen, artesunate, ARVs) with terrain therapy (changing redox state with stem cells, cell-signaling factors and artesunate) like no other physician in the field.
Posted by kday (Member # 22234) on :
Although I haven't been tested for XMRV, my extensive CFIDS/ME testing and symptoms are very consistent. XMRV isn't covered by insurance yet, so I'll wait on that one. All other testing (including the bike VO2 test) was covered.
In my case, I think the tremendous amount of physical and mental stress initiated by the onset of the Lyme infection (the worst stress I have ever experienced in my life) triggered CFIDS/ME.
It just makes sense.
Posted by sparkle7 (Member # 10397) on :
I posted some info about "The Brucellosis Triangle" about a week ago.
Perhaps, many of us are infected with this pathogen & it lays dormant until we undergo some stress (like a virus, tick bite, etc.) where it is triggered...?
I think it's good that Dr. C is flexible with his treatment. No one seems to really know the answer with these illnesses that we have. Until a cure is found - the doctors have to keep an open mind & try different things.