It feels like we’ve dipped a little and then plateaued. Not in any way crashed, but our physical resources are more limited than we would like. It still feels like HAART is working for us, but may not be enough for full function. We are vastly improved from 7 months ago when we started treatment, but are not fully recovered, though I had similar thoughts a couple of months ago and then we started uphill again. So it would appear that progress is not entirely linear.
We have both had to back off a bit because of physical limitations and a desire to work with the drugs and not against them. The absence of relentless pain and a little energy can really go your head, let me tell you. It is easy to forget that it is necessary to take care. The disease still rears its ugly head with unfortunate regularity, but its power is significantly blunted.
Ali will tell her own story soon I’m sure. A couple of weeks ago, I started having more sleep problems again. Sleep disruption is a sentinel symptom for me. A bad night’s sleep is generally followed by a sick day. Chicken or egg. A few days into it, I realized that I had let myself run out of Deplin by mistake. When I restarted it, things improved again. In my excitement to have discovered how potent it is for me, since I didn’t notice much going on it, and because it has been so obviously important for Ali, a trial of higher dose, 15mg, seemed like a good idea. It disrupted my sleep completely, so I went back down, but things have not yet settled down all the way. The other possible contributing factor was a change from a brand Estrasorb to a compounded estradiol cream. My sleep is completely dependent upon adequate estradiol, so I’ve switched back to what I was using before. The last couple of nights have been better, but not yet good again. My symptoms are subsiding as the sleep issue improves.
My recent experience with Deplin has led me to read more deeply about the methylation cycle to try to understand why l-methylfolate supplementation might be so important. Our current drug regimen can do nothing about existing integrated virus, which can be transcriptional or silent. It is unlikely we will be well unless the virus can be silenced. Take a look at this paper: (Blaskova/Hirsch). They found that the latent reservoir in HIV infected individuals without viremia had hypermethylated HIV-1 promoters that are resistant to reactivation in vitro, as opposed to viremic patients with hypomethylated 5′ LTR.
We have both begun weekly injections of B12 (hydroxocobalamin), 10mg IM, and a multi which includes B complex. The vital cellular functions that are dependent on the B vitamins require an adequate supply of the complex.
I am having an exacerbation of muscle weakness and a feeling of lactate build-up that could be related to adverse effects of AZT, though it goes up and down with all my other symptoms; if it were an adverse drug effect, I would expect it to get steadily worse, not wax and wane. In addition, there are a couple of patients who write to me who are having problems that could be AZT related or exacerbated. It is unfortunate that drug choices are so limited. Ali still has not experienced any problems at all attributable to the drugs. I would like to point out that I do not feel in any danger. If I have to, I’ll stop the drug, but I want to stay on it and will push through if I can until I know more.
Presumably integrated virus is still transcriptional. The negative testing for the protease inhibitors against X is unfortunate. The PIs interfere with the assembly of new viral product. A PI is necessary for complete blockade. There is a tiny amount of evidence in the literature that MLVs are inhibited by the PIs amprenavir and indinavir (Powell/Otto, Feher/Tozser). It is possible that XMRV protease differs from that of HIV too much for the drugs to have an effect. It is also possible that there is a problem with the testing of the entire class of drugs to date. In addition, one might speculate that even if X is not inhibited by the existing PIs, P might be, given that there is apparently activity against MLVs. We are considering our options.
For me, being better enough to enjoy myself is almost an ecstatic experience. I really didn’t expect to get better. Nothing in my years as a doctor had led me to believe that my illness would do anything other than continue on a downhill course. The story of HIV, at least in this country, is a hopeful one for us. The AIDS patients who died in the early years missed the benefits of the unfolding science, but most of us will still be around to see it, our disease is so slow. The trick for us will be to go on with the time we have left and not be anchored by anger and loss. There is redemption in forgiveness. Much has been lost, but there have been gains as well. Many of the people writing to me are struggling with or have mastered acceptance of very difficult realities. When released from the prison of illness, that wisdom and compassion will be a force to be reckoned with.
I have set up an elist for patients who are taking antiretrovirals and prescribing physicians to share treatment experiences. Caregivers are also welcome. If you have started or prescribed treatment, please contact me if you would like to be included: firstname.lastname@example.org