I’m not much of a blogger. My generation grew up with email and have been slow to adopt the new forms of electronic communication. But I am so grateful to this community, its founders and ‘old-timers’, and all of you that daily support and inform members of this site, that I think it’s about time I start to tell my own story. There is something very important about telling our stories to each other, knowing there are listeners who have been through their own ordeals and understand.

Brief history. After a long episode (6-7 weeks) of low back pain and inflammationi [1] a year ago last Christmas, I developed a 3-day ‘virus’ followed by severe myalgia and fatigue. Over the next six months I showed classic symptoms of FM but was given a diagnosis of polymyagia rheumatica (PMR) even though I’m too young and had no lab signs of inflammation (i.e., normal SED rates). However, I did respond to a short, 3-month course of prednisone at a low dose. My health insurance was with an HMO, and sadly a 15 minute visit just doesn’t give anyone enough time to do decent diagnostic work. I was getting nowhere. 

I suspected that I was in the early stages of CFSi [2]/FM. I had hypoglycemic-like symptoms, IBSi [3], and all the rest. By the summer of 2007, I began to ‘crash’ for 3-5 day episodes that would put me in bed and in a deep fog. After several of these episodes, I developed orthostatic hypotension, POTS, and cognitive deficits, and fatigue. The phrase used here ‘Kiss of the Dementor’ aptly described my situation. My sympathetic arousal (fight or flight) also was in overdrive. I went on medical leave in early July 07 and have been out of work since.

After my third referral to a psychiatrist, I gave up on my HMO went out on my own. I started an anti-oxidant protocol to treat oxidative stress developed my Martin Pall, Ph.D. (see his book here [4]) and found a private GP who would work with me and prescribed IM hydroxo-B12. After 3-months on that protocol with daily infra-red sauna, my hypotension and sympathetic arousal had subsided, but I continued to have 2-3 day flu-like flare ups every few weeks. These were not as severe as the summer episodes but suggested that some kind of chronic infection was around. In retrospect, I think these fall flare-ups were from the NAC supplement in the anti-oxidant protocol. The dosage was low (600 mg per day) but probably sufficient to cause Cpni [5] EBi [6] die off. Thank God for cpnhelp.org and all of the researchers who have continued to study chronic infectionsi [7] and pathogens like Cpn. I knew I needed testing but getting was not easy.

My GP consulted an infectious disease specialist, but he did not support testing for Cpn, mycoplasma and such because, in his words, “as we go along life all of us are exposed to and can test positive for these antibodies and titers.” Instead of trying educate and swim upstream, I took the advice of many in this community and went to Sacramento to see Dr. Powell. Thanks so much. It makes such a difference to talk with someone who has experience treating chronic, reactivated infections and actually keeps up with the literature.

I tested positive for several pathogens, including herpes viruses (EBVi [8] VCA EIA IgGi [9] = 4.0 and IgM <=0.9; HHV-6 IFA IgG 1:40 and IgM < 1:20; CMV EIA IgG = 2.14 and IgM = 0.23) and Cpn (IgA  > 1:256; IgG 1:512; IgM < 1:10). Mycoplasma pneumoniae was negative. For the last month, I’ve been on Valtrex for the viruses and recently started CAPi [10]. 

Already I feel better and know I am am moving in the right direction. At my age (55) living with an active infection that is depleting my cells’ energy takes a real toll on other systems (endocrine, heart, immunei [11]). These will take time and some intervention to mend, but I’m in it for the long haul. I’m planning to return to work this fall.

I have started to work on an article for the phoenix-cfs.org [12] website on infection and CFS/FM. I’ve been helped so much by what others have studied and written, especially Jim’s article from last year on Cpn and CFS/FM [13], and I’d like to make a contribution. Cort Johnson, the editor of the site, provides a terrific service analyzing and describing research to the CFS community. Although a few literature reviews on this topic have been recently published (see Nicolson 2008 [14]), these articles aren’t widely disseminated or easy for a general audience to read. The chances of someone with CFS/FM having an active chronic infection are quite high, but as we know, it is hard to get properly tested and then treated. Patients need more information about this complicate subject.

I could use some help on a couple of topics that I am still learning. I haven’t found a good general review on latent/active infection and a discussion of factors that trigger reactivation. Also, as many have written on this site, lab testingi [15] to detect ‘stealth’ pathogens that live inside our cells is complicated, especially tests that can distinguish latent from active infections, a distinction that was lost to most doctors I talked to for treatment. There is a very good discussion of this topic on the HHV-6 Foundation website [16], but the primary research literature referred to is technical, and I don’t know how well the principles discussed generalize to other ‘stealth’ pathogens. I would welcome advice, recommending reading or references.

In deep gratitude.

Chris

___________________________________________________________
CFSi [2] since 1/07. Pall anti-oxidant protocol since 8/07 with IM hydroxo-B12. Dx 3/08: Cpni [5], EBVi [8], CMV. Valtrex since 3/08. CAPi [10] since 4/08: Biaxin 500 mg BID, NACi [17] 1200 mg BID, Flagyli [18]i [18] 500 mg BID pulse every 3 weeks.