I think we are both getting better. There has been an incremental improvement. Still a long way to go, but things are definitely looking up.
My daughter started tenofovir 300mg once daily as a third drug four weeks ago. She improved noticeably after two weeks and has stayed better for another two weeks, with a three day dip in the middle, but not a severe one. All of her symptoms are more stable than before starting treatment three months ago. She still has awful moments, but they don’t last long compared to before. There is one confounder. She started Actos for hypoglycemia shortly before starting antiretrovirals and it was immediately helpful. However, her dysautonomia is improved and I can’t attribute that to Actos. The other change for her was stopping long term antibiotics.
I restarted tenofovir at half dose 2 weeks ago and went up to full dose 5 days ago. I again had a small flare of neurological symptoms that is almost resolved now. Other symptoms are much improved, e.g. cardiac and GI symptoms. I am still having episodes of instability, but they are less frequent, less severe and not as long lasting as previously. I’m hard to evaluate however, because I was already on an uphill course for the six months prior to starting antiretrovirals, since discontinuing Lyme treatment last summer.
Our current regimen is:
AZT or zidovudine 300mg BID
Isentress or raltegravir 400mg BID
Viread or tenofovir 300mg once daily
I can’t tell yet whether C4a and TGF beta-1 will be good markers of recovery or not. So far it appears that we both had an inflammatory flare after beginning treatment that was partially resolved a month ago. New specimens from this week are pending. They take a couple of weeks to come back.
It is certainly much too soon for celebration. Things don’t look that different from the outside. She’s not ready for school and I’m not ready for work. But less suffering overall at our house. Signs of life. Each day lately I feel more and more optimistic.
I drafted the above last night. After a very active day yesterday, my daughter woke up feeling very poorly today and is having a harder day than any in the last couple of weeks, with symptoms of inflammation and dysautonomia. However, she bounced quickly with supportive care. So I think it is a good time to post. To communicate the hope and the uncertainty…