We seem to be slowly, but surely, getting lives. For real. Ali is past 40,000 of her 50,000 words for NaNoWriMo and functioning socially on a level that has been lost to her for years. I’m trying to figure out what’s the next step for me professionally, but I am ready physically to work part time, also functioning on a level beyond anywhere I’ve been for years. We are both solidly above 80 KPS points for the last couple of weeks. I was out and about yesterday for five hours during which I pretty much didn’t feel sick. That isn’t the norm (yet?), but it is possible.

I don’t experience the improvement day to day, or even week to week, but in two to three month increments, it is obvious. The instabilities are damping out. The ground is more stable, reliable. Even the power of our once constant companion- push/crash seems diminished. Stress tolerance is much improved.

Actos has been very helpful for me. It seemed to provide definite cause and effect improvement across a range of inflammatory symptoms (see last post which discusses my rationale for trying it).

I haven’t wanted to write about this until I was sure, because it seems so unlikely. I’ve had a severe peripheral neuropathy for six years. The associated pain nearly destroyed me. It is dramatically improved in the last three to four months. A lot of the time now, I don’t have anything that I would call more than paresthesias. I was hopeful of learning to live well with pain, but not of having it get so much better. In fact, it was the last symptom I expected to improve. Michael Snyderman, oncologist with CLL, on antiretrovirals, has also experienced a dramatic reduction of his neuropathic pain. This is astonishing to me.

8 months

We’re doing very well. We are either level or going very slowly uphill and I would guess the later. Our improvement feels pretty solid at this point. Incomplete, but the worst symptoms are gone or hugely reduced. If you remove the horrible downhills, and if you don’t have to spend much time at the bottom of the declines, it’s a life. In particular, we both feel that our brains are working well, bodies a little less so, but all in all, pretty fine, compared to where we’ve been. We are both so grateful.

Ali is completely immersed in NaNoWriMo. She has 15,000 words down towards the first draft of her post-apocalyptic vampire novel. She is living and breathing her story right now and it is more wonderful than I can say to see the light in her eyes. She has been attending the local NaNo writer’s meetings and she went out the other night with a friend for dinner. She rarely mentions her physical symptoms, though when questioned, she still has some. Like me, cheap stuff compared to where we’ve been.

Ali had an easier time getting on the drugs than just about anyone else that’s started. Because her sugar sensitivity was completely out of control and she couldn’t eat a speck of sugar without getting sick, and even though I knew that it would make it more difficult to tell what was going on, she was pretreated with Actos for two weeks prior to starting antiretrovirals. It had an immediate positive effect on her ability to eat normally. I’ve been reading about PPAR-γ agonists and the evidence supports it for consideration in this setting. Thus, I too started Actos two weeks ago, at very low dose. At 15mg, a week ago, it had an obvious salutary effect, with improvement in several prominent inflammatory symptoms. 

Actos is a PPAR-γ agonist (PPAR-γ regulates fat and glucose metabolism). It is an NFkB inhibitor (anti-inflammatory). It inhibits VEGF (a vascular permeability factor which features prominently in Sandra Ruscetti’s PVC-211 rat model of neuropathogenicity). It reverses atherosclerosis and improves glucose utilization. Here are a sampling of papers and abstracts to give you the flavor, though the literature is vast. And for the record, lest I seem too excited, there is cautionary evidence in the literature as well.

I’m certainly not saying that it’s any kind of panacea. Lots of people have tried it. Like everything with this illness, it helps a few people a lot, more people a little and lots of people not at all. But it may be a different ballgame now that we are only looking for things to potentiate the positive effects and attenuate the negative effects of the antiretrovirals.

Actos, with or without metformin, is indicated in the treatment of PCOS, a syndrome characterized by multiple receptor insensitivities. PCOS appears to have a very high prevalence in second generation X infected women. Another clue…

I’m feeling happy, not angry at the moment, so I’ll spare myself the tirade about Dr’s Kearney and Malderelli’s unfortunate comments in print recently. Government doctors in a research setting casting aspersions on real doctors in the trenches. Please read this excellent blog commentary on the subject: The Tuskegee Mentality: Condemning Antiretroviral Treatment for ME/CFS by Larry Gilman (link). Amen to that.


Anger as soon as fed is dead-
’tis starving makes it fat.
 ~ Emily Dickinson

I’ve done a lot of thinking about anger since my post written during the weekend ILADS was holding its conference. In particular, the difference between constructive and destructive anger keeps coming up for me. I received my first hate mail after that post, in addition to many letters of agreement. The thrust of the anger directed at me had to do with my criticizing doctors who validate the illness and offer up a hope for cure. In contrast, anger in the CFS community is seen currently as a positive force for change, as it was in the days of HIV. CFS patients are more jaded due to having had a syndrome without a known etiology for years or decades,  thus precluding meaningful treatment.

For me, for many of us, it will be a race to the finish to deal with all of the anger and loss. In the Lyme community they call it Lyme rage, though anger is only one of the emotions that lives closer to the surface than it used to. Anger is one of the most difficult feelings to receive constructively. It shuts people down. It is often better in terms of outcome to let it pass through without action. But anger fuels the flames of political change also. Another lesson of HIV. The trick is to turn the anger into constructive action, rather than letting it fester or become vengeful. Properly channeled, it has the potential to be redemptive, rather than destructive to the person experiencing it and those closest to them. For the sake of personal emotional and physiological health, it is essential to forgive those who deserve to be forgiven and release thoughts of those who don’t, in favor of specific constructive action. A willingness to reconsider the mistakes of the past in light of new information is a trait that makes someone worthy of forgiveness.