I'm in another very broken sleep cycle and feel fried from it. It makes me a little nervous when this occurs because it usually means a crash is in the works. Add the broken sleep with increased tinnutis, severe muscle pain, and a new symptom-muscle spasms-and you have the makings of some fun days. The fatigue from not sleeping well makes the cognitive issues worse so I hope that I remember to say all that I'm wanting to in this blog post.
I think I've mentioned before that my primary care physician was also an HIV/AIDS specialist. I say "was" because I found out Monday that he died last week from a pulmonary embolism. I had printed out the article about XMRV and went to his office on Monday to talk to him about it knowing that he would help me sort it all out. I had also hoped that he would have some ideas about treatments.
It's very unnerving because Dr. Scott is the second primary care doctor that I've had die in less than a year. My previous primary care doctor died the Tuesday before Thanksgiving last year after trying unsuccessfully to get out of a trapped eelevator. He fell to his death.
Dr. Scott told me the first time I saw him that he thought I had either a slow virus or a retrovirus. I wanted to show him the article and tell him that he was right. He was very involved in the HIV/AIDS fight and went to Africa on a monthly basis to provide treatment to AIDS patients there. While I didn't have the close relationship with Dr. Scott that I had with Dr. Kliman it is upsetting nevertheless.
I spoke with my ME/CFS doctor this week about XMRV. He is cautiously optimistic. They are in contact with WPI as well as other ME/CFS doctors throughout the country trying to figure this stuff out. They will be one of the doctor's offices who will be providing unofficial experimental treatments for XMRV so they are putting systems in place to accomodate everything coming their way.
It's worth noting that the AIDS epidemic occurred for some time before the HIV virus responsible for AIDS was discovered. Getting a diagnosis of HIV used to mean a death sentence but now with the medications they can render the virus virtually undetectable. Even though the retro virus is still there it is stopped in its tracks with the anti retroviral medications. This is why I'm hopeful.
Heres an interesting article about the discovery of the HIV virus. Apparently, one researcher thought it was HTLV which is the same retrovirus that DeFreitas found in 1991 in relation to ME/CFS.
The problem with these medications are the cost and side effects. The medications have to be taken daily and you can't miss a dose (even though people do). It's no walk in the park. You know what though-I don't care. I'll be a guinea pig. I told my doctor to put my name on the list for treatment. I want my life back. If I can't have it all back I'd settle for 50%.
I've come a long way since starting treatments for this but I was so far down in terms of functioning that I have a long way to go. One year ago I was basically bedbound with the few exceptions of being able to get out for a very, very short time a couple times per month. Now I can sit up for much longer periods of time, I can get out of the house a couple times per week and my bad days are nowhere near as bad as they used to be.
I know and have known many people with HIV. I lost many friends to the AIDS epidemic. I've seen the antiretroviral meds give people back their lives. Once living with a death sentence some people have had to adjust to living life with the promise of a future.
There is another treatment that is showing promise for ME/CFS patients. I think its pretty well known in the ME community that there is a correlation between ME/CFS and the lymphomas. There is a paper that was published that talks about a three patients who had both ME/CFS and non-Hodgkins Lymphoma. While undergoing treatment with Rituxan they had significant improvement in their ME/CFS symptoms! The only problem is the improvement is temporary. Once they relapsed again they were again administered Rituxan and had the same result. I'm wondering if this is the medication the WPI referred to when they mentioned that a medication cocktail might include anti-inflammatory medications, anti retroviral meds, and cancer meds. Heres the link to the article: BMC Neurology 2009, 9:28 doi:10.1186/1471-2377-9-28
As far as my own treatment goes I will be starting Arteminisin and Low Dose Naltrexone. The Arteminisin I'll take for 7 days then go off it for 7 days. Apparently with Arteminisin the body stops processing it after 7 days so you have to stop in order to trick the body into processing it again. We talked about other antivirals but decided on this because it has such a broad application. For those who don't know Arteminisin is used to treat malaria, parasites, and viruses.
I asked my doctor about my low blood sugar readings. While on Valcyte my blood glucose was on the higher side but off Valcyte it is consistantly low. He said that its likely that my cortisol levels are too low even after 18 months of Cortef. So I'll be doubling my dose of Cortef but still within the therapeutic range.
Dr. Cheney and Dr. Bell have both stated that they believe XMRV is likely a causitive factor in ME/CFS. In fact, Dr. Bell has called XMRV "the puppet master."
There's lots of interesting things in the works so lots of reasons for hope. I don't mean hope for a cure but hope for real treatment.