Reprinted with the kind permission of Corinne and Health Rising.
(A former personal trainer, Corinne came down with severe ME/CFS about two decades ago, after being repeatedly exposed to Giardia at work. She began seeing Dr. Peterson in 2009. She went from mostly bed bound and using a wheelchair to being able to get out and about and travel to a family get together for the first time in years. While she was trying IVIG, however, her health, for reasons no one knows, suddenly relapsed . She slowly regained ground but then new troubling symptoms popped up.
Upon hearing she was feeling electric shocks when bending her head forward Dr. Peterson ordered a full series of spinal and neck MRI’s. Corinne had a spinal cord lesion that was causing strange sensations in her back and lower limbs and her feet to go numb. Trips to neurologists produced an array of sometimes frightening diagnoses but ultimately, as so often happens with ME/CFS patients, Corinne slipped between the cracks. After two years of searching the cause of her spinal lesion remained unclear. Now Corinne is embarking on a powerful antiviral called Vistide that Dr. Peterson has shown can be effective – but is complicated to administer – and can have significant side effects. – Cort)
See more of Corinne’s blogs on seeing Dr. Peterson here.
2014 and March 2015.
“Fear is just excitement in need of an attitude adjustment” ~ in my fortune cookie :).
My medications as of this date:
Epogen and IV saline for blood volume
Clonazepam for sleep
Topiramate for headaches
Meclizine as needed for dizziness
and homemade kefir and fermented veggies for probiotics for my gut.
I had stopped drinking kombucha just prior to this visit because when I started in April, I noticed that my liver enzymes (ALT and AST) were coming back elevated in my labs. My own research and experimentation proved that this was not a coincidence. Apparently, there is a mild toxin produced by the SCOBY and apparently I am sensitive to it – or to the low amount of alcohol produced by the fermentation. Either way, an online search showed me I wasn’t alone. Store bought or homemade, it did not matter. Even a sip before a blood draw resulted in elevated enzymes and when the ALK PHOS and bilirubin also started to rise, I knew enough was enough. I stopped drinking the kombucha tea and my labs immediately returned to normal.
In addition, I was told by Dr. Peterson to stop taking Valtrex prior to starting Vistide.
While visiting Dr. P in March, we discussed treatment for the cervical spinal cord lesion discovered in February 2013. After a phone consult with Dr. G, the neurologist he referred me to at UCSF, we sat down to talk about a plan. Dr. G who, though undiagnosed, was leaning toward neurosarcoidosis as the cause, was suggesting a steroid regimen. Dr. P, on the other hand, was not comfortable treating me with immunosuppressors, knowing my history. His plan of attack was to try the antiviral Vistide (cidofovir) first.
I agreed to give Vistide a try and once I was fortunate enough to get my local physician to agree to write an order for the infusion unit at the hospital near my home when I returned, I was off to Incline Village for two weeks to test my tolerance to the drug and its complicated protocol, set my dosage, and get familiar with the entire Vistide routine.
Day #1 (Sunday)
Because I will be staying two weeks, flying rather than having someone drive me, is the best option.
For the first time, I’ll be staying at my cousin Traci’s house, about an hour drive from Dr. P’s office. Traci has always been my reliable airport shuttle – driving me to and from the hotel when I fly in for these visits. But this time, not feeling comfortable staying alone in a hotel without knowing how I may react to Vistide, she will be more than just a shuttle driver and her home will become my home-away-from-home for the next 14 days.
After picking me up from the airport, Traci drives me back to her house and introduces me to her guest room, a quiet and comfortable space, separate enough from the rest of the house to give me privacy and peace (she has three adorable children).
Today Traci’s husband is barbequing his special slow-smoked ribs in honor of the famous BBQ fest that is coming to town next week. Can his ribs match up to some of the best in the country? We’ll see next week, but for today it is ribs and coleslaw for dinner!
Day #2 (Monday)
I purposely planned this day to rest between travel and seeing Dr. P. I settle in, getting accustomed to where everything is and much to my delight, I get acquainted with the pantry which resembles a mini Costco!
Traci and I reminisce over family photos, sharing laughter and tears. I feel so blessed to be in such a warm and loving environment in which to support me during the adventure to come.
Day #3 (Tuesday)
Today is the day! This is when my Vistide challenge begins. I’ve heard about other’s experiences with the potent antiviral, but I prefer to keep my slate clean. My response may not be like anyone else’s, so it isn’t worth the energy thinking about it.
My appointment with Dr. P is at 8:00 a.m. Traci and I leave by 6:30. After driving me over the mountain to Incline Village, she must get home and get her two youngest ready for school – then return in the afternoon to pick me up! I frequently speak of the angels that appear just when I seem to need their help in navigating this complicated medical maze that has become such a big part of my life. Without a doubt, for this blog, that title belongs to her!
When Dr. P greets me, it is with a question, “Are you here to discuss Vistide or…” “Heck no! I’m ready to start today. Bring it on!” I respond. Seemingly pleased, he checks my most recent labs drawn before I left home, to be sure my kidney function, especially my creatinine, is normal (a pre-requisite to infusing cidofovir) then off I go, upstairs to the IV room.
Nurse Jane is the one who will lead me through the process, step by step. The Vistide protocol is complicated. I begin with a one liter bag of normal saline mixed with Zofran, an anti-nausea drug. This takes about one hour to infuse. It is followed by an oral dose of Probenecid, a drug which is used to lengthen the retention time of the antiviral, keeping you from excreting it too quickly so that you can use a smaller dose, lessening the chance of toxicity.
Next comes another liter of saline, minus 100 ml. After infusing this 900 ml (in about 45 minutes), it is time to go down to see Dr. P who injects my specific dose of Vistide into the remaining 100 ml.
Back upstairs I remain, letting the antiviral slowly drip into my vein over a period of another hour. When that is complete, it is time for more saline. Another liter is attached and usually the patient is allowed to infuse as much as tolerated. This hydration is all part of the protocol to assist the kidneys since Vistide is a “black box drug” (there is a label on the box that warns it could be life threatening). In Vistide’s case, the threat is to renal function. Kidney failure is mentioned as a possible side effect, so this is why all these precautions and more, are taken.
After the infusion, another Probenecid pill must be taken. I am so full of fluids and the food I have eaten in an effort to ward off nausea (a side effect of Probenecid) it is tough to swallow! But overall, I feel pretty good. Extra fluids always seem to pump up my blood volume and give me more energy.
The entire procedure takes about four hours and by 1:30, Traci has me on the road back to her home. The first day protocol is not complete however. Eight hours post-infusion, the last dose of Probenecid must be taken. This is totally inconvenient since I had gone to bed at 6:00 p.m. Nurse Jane told me not to stress out about being exact, so I just take the pill during one of my many restroom visits that night – the three liters of fluid require many! I also munch on a small snack with it. I notice that I am bit off balance, walking into door jams in the semi dark…(effects of the drugs?). Need I say more or is it obvious it was not a restful night.
Day #4 (Wednesday)
I usually am a very early riser, but I spend most of the morning in bed. I am wasted – the trip, chatting with Traci and her family, the whole day at the doctor, the unrestful night, the drugs — have taken their toll and that is why today starts one of the real tests of being able to tolerate the Vistide protocol: the three days per week labs! Specifically, it is to follow kidney function closely and one’s ability to tolerate the drug.
Traci drives me to the closest LabCorp. I am shocked when I walk in – wall to wall people! I end up waiting two hours :(. I learn two important lessons…1. LapCorp allows you to make appointments online….take advantage of that! 2. Don’t go in the morning. That is when all the “fasters” go.
On the way home we pick up Chinese takeout. Eating at home I realize I can’t really taste my food and I can barely hold a conversation. I am a legitimate space cadet — out-of-it, unable to focus. It has to be the drugs. It is time for a nap, a long one, one that continues on into the afternoon and through the night.
Day #5 (Thursday)
Nothing to do but rest and thankfully this bed is one of the most comfortable I’ve ever been in.
Day #6 (Friday)
It is lab day again, but this time I’ve made an appointment online for the early afternoon. The place is empty. Lesson learned. There is one hitch however. The phlebotomist has no record of the standing order I brought in on Wednesday. It is not in my file nor is it in the computer. It just disappeared! Because this is not the first time something like this has happened, I always keep a copy of everything and luckily, I have one in my purse. Because of this, I am out of there in 20 minutes.
Day #7 and #8 (Saturday and Sunday)
I had started to notice some intestinal cramping on Friday but this weekend it is worse and my appetite is not what it usually is: ravenous. Food does not taste right. In fact, it is rather bland. It’s obviously a result of the new drugs, but other than that I am doing ok.
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The weather is perfect and I’m blessed to have a sliding glass door from my room to the backyard where I can sit and enjoy the fresh air. After tackling that daunting task of showering and washing my hair, I do some reading and check my email, but I spend most of the weekend resting and trying to allow my body to get accustomed to my new regimen and the potent chemicals that come with it.
Day #9 (Monday)
It’s lab day again! My appointment is at 1:00 and once again this time of day proves to be the quickest. There is only one person waiting. The cramping has ceased and my appetite has returned. That’s good because there is plenty of food in the house and I see no reason why any of it should go to waste.
Day #10 (Tuesday)
Normally Vistide is infused every other week, but because I am just starting out and am receiving a mini-dose to test my tolerance, dose #2 comes one week after the first, and today is that day.
Once again, Traci and I leave at 6:30 for the morning commute to Incline Village. I see Dr. P prior to my infusion and inform him that I am feeling fine and ready to continue. He attributes the loss of appetite and the cramping to the Probenecid. My labs look good so he urges me upstairs where once again, I go through the entire routine: one liter of IV saline (mixed with Zofran), oral Probenecid taken with food, 900 ml IV saline, the mini-dose of Vistide in the 100 ml of saline left in the bag, more food, another one liter of IV saline (more Zofran), and then the oral Probenecid. All completed in four hours (but don’t forget there is another dose of Probenecid to take eight hours later).
My bud Jeff offers to drive me to Reno so I can meet Traci part way. Anything I can do to help make it easier on her is good news to me. Jeff, like always, is great company – there is never a lack of laughter. It makes me reflect on how “energized” all those fluids help me feel, as well as the affect that the company of fellow patients who have become very close friends, has on me. All positive, all good – even if the talking will take its toll on me later, it is still worth it.
It is late afternoon by now and it has been quite a long day. But I’ve accomplished what I came out here for – two trial doses of Vistide. I have begun the process, starting down a new path. How long I’ll be on it I don’t know, but I am on it – the potent antiviral road. I had not bought a return airline ticket because I wasn’t sure how I would be feeling or how long I would be staying, but after today it will be time to start making plans to return home – plans that will include the ability to continue these infusions without missing a beat.
Day #11 (Wednesday)
Vistide may not be for you if you are faint hearted about having your blood drawn. Yes, you guessed it – today is lab day again! I go in for my two vials (CBC and CMP) and urinanalysis, all part of Dr. P’s cidofovir protocol. Though I was a bit spacey the day after infusion #1 last week, today I am a super space cadet! I could not walk a straight line if my life depended on it and mental clarity is not an asset I possess. I’ve been alcohol intolerant for so long that it is difficult to recall, but I think this is what It feels like to be slightly inebriated…without the “high.” Otherwise I am okay, but it seems like a good day to stay off my feet as much as I can. :).
Day #12 Thursday)
My brain is clearer today. The local rib cook off is in full swing but unfortunately, I am not feeling strong enough to go with Traci and her husband for lunch to sample the feast. They are kind enough, however, to bring me a lunch to go! Thankfully, my appetite is good and I am able to enjoy every bite. (By the way, Traci’s husband’s ribs win my taste test hands down!).
Day #13 (Friday)
It is Day #13 and it’s a Friday…hmmm – nothing scary here unless you are squeamish at the sight of blood. Labs again! I’m feeling pretty good. I did not have any cramping or loss of appetite this week, so that’s a positive.
Today is my last day here. As I pack, I reflect on how grateful I am to have been able to stay with family in such a comfortable, supportive and loving environment. And although this chapter is coming to an end, this treatment option is really only beginning as I will have to hit the ground running when I return home to continue the protocol. A lot of groundwork has been laid and now I will see if I can continue to get treatments in a smooth and organized manner.
Day #14 (Saturday)
My flight is at 10:20 a.m. Traci and I hug at the airport and tears well in our eyes. As I am thanking her, I hear her thanking me….thanking me for staying with her family. Imagine that.
Like always, it is a long day. There’s the flying, then the two hour ride home, which becomes three hours because of an accident on the interstate. I’m feeling pretty decent though, decent enough to stop for lunch while the traffic clears.
I have 11 days before my first dose of Vistide here at home at the infusion center associated with the local hospital. Hopefully, that is enough time to resolve any kinks in the process. As I lie in bed, I think about what I have accomplished in these two weeks – traveling to Reno, back and forth to Lake Tahoe to get my first two Vistide infusions, labs three days a week…oops that reminds me…I must mark my calendar – labs on Monday!
Conclusion and Visit #14 to Dr. Peterson – March 2015
The complexity of continuing the protocol at home was eased by a few things:
1. I am lucky to have a home health nurse twice a week who was able to do my lab draws (I didn’t always adhere to the three times a week routine after it became clear that they were always in the “normal” range. I never, however, missed the draw the day after, or the one a day or two before the infusion).
2. My primary care physician kept his promise and wrote up the order for the infusion unit as soon as he received a copy of the protocol along with my new, regular dosage of Vistide.
3. The infusion unit head nurse was on the ball as usual, fitting me into the schedule within that two week period so I did not miss any time.
Sharon, the head nurse and I, were familiar with each other from my IVIG days. In fact, on the first day I arrived to infuse, she said only half kiddingly “Corinne, I’ve never worked with Vistide before, but I trust you know what you are doing, so you run the show.” She knew I had already been through the complicated protocol and could be of assistance in helping things run on time. She respected my proactive attitude and regarded it as an asset to her very busy schedule. As a result, everything ran well every time.
Now that I was no longer on the mini-dose but on a dose consistent with my weight, I understood why Dr. P’s nurses and many patients referred to this treatment as “chemo.” I have never had chemotherapy but this could not be too far off. Dr. P had warned me that the feedback he received from patients was that they experienced two rather “rough” days followed by improved health until the next infusion, when it started all over again.
After my second or third full dose, I found this to be true. I would come straight home from the four hour infusion and go straight to bed – no desire to eat, talk, watch TV or do anything. I would feel rather ‘poisoned’. And the first night would be very unrestful, lots of restroom visits because of the three liters of saline, nausea (sometimes more than others), and of course that “eight hours after” Probenecid to force down. Day #2 would be no “walk in the park” either as sometimes there would be nausea and often just a lack of appetite – and of course tiredness due to the lack of sleep.
Not wanting to take so many drugs and hoping it might help with the “poisoned” feeling, at one point I tried, with my doctor’s permission, to lower the amount of Zofran (the anti-nausea drug) that was added in relatively high amounts to the first bag of saline. But I ended up raising it back to the original amount when I decided that “toughing it out” with nausea on day #2 was not a good choice.
Unfortunately, I had to add yet another drug when I noticed bright red blotches on my chest and arms, appearing the day after the infusion and becoming dull or disappearing by day #3. It wasn’t until the fourth month when one began itching that I realized I was having an allergic reaction — but to which drug in the concoction?
My nurses and I decided it was probably the Probenecid, but regardless, I had to start pre-treating with Benedryl. Dr. P’s nurse suggested I eliminate the “eight hours after” Probenecid altogether. Alleluia! That was probably causing most of the day #2 woes anyway. After that, I handled the infusions really well.
From about the third month on, I started noticing an improvement in my overall health. It started with just little things, barely noticeable, but it wasn’t long before I realized that I no longer had to think about every little thing I wanted to do. Soon I was showering and washing my hair without a thought, cooking more, going out to lunch now and then, staying up a little later, driving short distances and using the computer more without getting a scrambled brain. I was told that I looked healthier – better in an intangible way (right Cort? :)). I had definitely climbed up to a 30+ percent functioning level – somewhere I had not been in three and a half years.
Though I felt better overall, my neuro symptoms from my lesion had not improved and my repeat MRI revealed that everything was the same. Every now and then I would have a flare of pain and worsening symptoms related to the lesion seemingly brought on by some emotional or physical stress. Yet, I still felt good enough to consider flying to Montana to visit a dear friend, though personal and business issues prevented that from happening and resulted in my being a month late for my next visit to Dr. P.
When I finally made it there in March, seven months after beginning Vistide, Dr. P told me I was done taking the drug. When I whined as to why when I was feeling so good, he simply answered “that’s the way it works.”
After stopping, I had three more good months – really good because now I didn’t have the down day from the infusion – and then I started to decline. So all in all, I had seven good months at 30+ percent on the potent antiviral.
I know that I could not stay on Vistide forever for safety reasons. I am aware that lowering my viral load was not getting to the root of the problem, but I feel that if there was a way I could have safely stayed on cidofovir for the long term, my spinal cord lesion would have calmed down and the inflammation would have eventually gone away. I don’t know how I know, but I just know. Where’s Chimerix’s new version of Vistide (CMX001 (Brincidofovir)) when I need it?!
Through another ME/CFS patient going through similar CNS/autoimmune-type issues, I came up with the name of a neurologist who seemed like he might just get the bigger ME/CFS picture. Dr. P researched him, eventually took the time to consult with him by phone and decided that I needed to see him. OMG, neurologist #4!
So, my next blog will be about my visit to Dr. W in Santa Barbara, California (is it just a coincidence that my doctor visits turn out to be in such beautiful places?).
‘Til then…be well!
See more of Corinne’s blogs on seeing Dr. Peterson here.