A Recovering/Recovering Story – The wide range of recovering stories demonstrate how varied the ME/CFS population is; each story will only apply to a subset of people with ME/CFS
(Vistide is a very strong drug that Dr. Peterson has been using in select patients for several years now. HVS has been telling about his experiences with the drug on the Phoenix Rising Forums and agreed to lay out his experiences in a more organized fashion)
Why did you decide to see Dr. Peterson?
I had a sudden illness after a severe cold/flu in March ’08. Initially I had a diagnosis of mono with titers off the charts. In retrospect mere mono would’ve been a blessing. Unfortunately, the mono diagnosis delayed my seeking real treatment.
My spouse had received a CFS diagnosis from Dr. Peterson about 7 years ago and was put back into good health thanks to anti-virals, so it was natural for me to seek him out. Either she “gave” it to me or we both have the freak genetic defect that allows whatever agent’s out there to give one CFS.
Why did Dr. Peterson chose Vistide for you?
I have EBV and HHV-6. In subsequent testing, I was found to have had CMV, too. So it was EBV, HHV-6, and CMV.
Vistide is a powerful drug – it can have strong effects- and not everyone iscomfortable taking such a potent drug. Why did you decide to try it?
In my case, the cost of not taking it was losing my career…guaranteed. As the main breadwinner in my family, that cost is unacceptable for the future of my spouse and child. The consequences of not recovering in the next six months would be losing a career about eight years in the making with NO prospect for other gainful employment to support my family.
Peterson is an amazing diagnostician. He goes both barrels after the diagnosis leaving no stone unturned because he assumes nothing. He collects tons of data so that he can try to figure out what’s going on whether its cancer, malaria, dengue fever, or this crazy syndrome. He did more diagnostic work for me in 3 days than 15 doctors did in 15 years –Be ready for weeks of tests!
If you are one of the small percentage of people diagnosed with CFS who actually fit the Incline cohort (viral “driver,” whatever the original cause), he’s not going to recommend CBT…he has lots of experience in going after it aggressively.
Did you experience any side effects?
I had no side effects and my kidney and liver levels remained fine. Dr. Peterson is extremely careful. He understands that Vistide is potentially toxic to a patient’s kidneys (though he thinks it’s safer than Valcyte). That’s why he follows a rigorous protocol for delivering the medicine and monitoring the patient constantly between infusions.
I can see why he really wants to administer the infusions himself…the protocol is complicated and the consequences of any mistake could be terrible. Doing a few of his specialized tests in my hometown has proven a huge fiasco with one major mistake that delayed us a long time.
Vistide is tough, but for those of us who have been incapacitated by this disorder, are on disability leave from work, etc. etc. it is right. The emerging specter of heightened lymphoma risk in Incline cohort patients is another consideration….
Did Dr. Peterson have you on any other medications or therapies?
Peterson had me on no other medicines or therapies. I had no other underlying health problems, took no other medicine, have no mood problems, or anything. Also, I had no significant swings in my condition prior to starting treatment. I was either weary, way weary, or really way weary. Other than being a cognitive disaster, poor sleep, waking exhausted, tender glands, and OI (with a kind of vertigo) I had no other symptoms.
How did it go?
First, let me preface what I report with the fact that what works for me will NOT work for you (necessarily). While there are cause/symptom consistencies across MECFS cohorts, there are many important differences. AND, while there is basic consistency across the Incline (my) cohort itself, there remain important differences. After all, just because there is some kind of neuro-immune problem across the board in this subset, it doesn’t mean the various “screw-ups” in our bodies will be the same.
(Because this is the case, I strongly suggest that you visit one of the few docs in this country who are good diagnosing this beast, Peterson, Klimas, Lapp, maybe some others.) Sex, age, duration of illness, etc. etc. will be different between you and me.
August: I began Vistide with Dr. P in August 2009. The first dose was a trial to see how I would tolerate it and the probenecid. Dr. P. checked kidney and liver levels every other day for a week – I passed with flying colors. I took the second dose a week after the first.
Very soon thereafter I was feeling a 4 (on my personal arbitrary scale of 1-10); I usually feel 2 (I can’t sit up to eat) or 3 (a couple flights of stairs would induce vertigo-inducing weariness). …No way was I gonna attribute that to the medicine after 1 1/2 doses. Not a chance. I’m too skeptical for that. Four was the tops I’d felt throughout my illness; I’d felt 4 for a lovely week here and a nice week there but never more than a week.
But another week passed and another and I stayed at 4.
In mid September I had to attribute the 4 to the Vistide; I just had nothing else to which I could attribute staying at 4 for an unprecedented stretch. I could remain sitting upright comfortably for long periods and I had much greater endurance for standing upright. (My problem was never OI, just debilitating weariness from the effort.)
I began to be able to endure walking more; doing little chores that needed to be done around the house. By late September it occurred to me that I was at 5. In other words, I am running at about half-speed. I’ve never seen 5 since I fell ill.
Stairs, extended careful thinking, extended childcare, etc. etc. are a bit rough and all demand recovery time; but reaching this level is really, really pleasing. It’s just enjoyable to do some common, everyday things you don’t think about when you’re healthy.
So, it’s been not quite two months and I’ve gone from a 3 to a consistent 5, an all-time high since I got ill. I can’t wait to continue my infusions; I can hardly remember what 6 feels like. By the way, I continued to do labs three times a week without fail.
Regular sleepiness and sleep patterns returned about half way through my first three-month course. I was never particularly sleepy when I was in the depths of this illness. I was debilitated with tiredness, but I was not sleepy–there’s a difference. My sleep would be light and disjointed. I would wake up tired.
About a month and a half into the Vistide nighttime would come along and I thought, hey, I’m actually sleepy. Now I get sleepy late at night like a normal person and I sleep soundly. I always slept soundly before I got ill and I’m back to normal. It’s fun to be ready for bed and lovely to sleep soundly. :)
Hmm, so I went from not able to work or be upright more than a couple hours a day doing very little to able to do what needs to be done around the house, with my child, and at work. Terrific!
Nov 1st
I’m loving life at a consistent 6 on the exclusive, trademarked HVS scale (in which 1 is getting out of bed only to use bathroom and 10 is capable of everything demanded of life–not playing sports or anything like that, necessarily). It’s a great feeling. I even feel 7 quite often when I’ve carefully rationed my energy, but I’m consistently at 6, no problem. :)
I’ll reach the three-month point on Vistide in a little over two weeks.
Nov 18th
I got the treadmill/VO2 max results. Astounding. They almost doubled from 15 (technically disabled for a person with my profile) to 28 VO2 max. I still go into anaerobic metabolism early, but I have a vastly, vastly better ability to metabolize oxygen. A healthy person of my profile is expected to be at 44, so there’s a way to go. But overall, this is huge progress. Metabolism’s working!
Feb 10th
At 6 months I’m at 90% and back to work, back to being a capable parent, back to taking care of the house. If I don’t improve another inch on Vistide, I’ll count myself beyond miraculously fortunate.
One way to measure my progress (one that I wish more patients had access to because it obliterates the arguments of the Wessley types) is my VO2 max, which suggested I was the equivalent of someone with heart disease and qualified me for federal disability. I was on medical leave from my job. Stairs were tough. I spent 90% of the day lying down and could do very little around the house. I was heading towards serious serious incapacity, but because I clearly got this from my spouse we got to work at it with Dr. P very early on in my illness and avoided the horrible bodily injury so many on these others experience.
So right now I am back to work at a desk job and can totally sustain it. I can’t exercise, yet. The demands of life (I have a young child) take up just about all I’ve got. If I don’t improve another inch I’ll be thrilled beyond saying
Congratulations on the your experiences with Vistide! One last question; What are the costs?
Cost of vistide were tremendous: mainly to my insurance company, thank goodness and knocking on wood. So treatment was covered. But as any patient of Dr. P’s knows, he will run all kinds of lab tests that even the best insurance company will reject. Of course, these are what really form the basis of his diagnosis! It’s a tragedy that most people cannot afford to see him.