(In what has become easily the best documented interaction of any patient with Dr. Dan Peterson, Corrine returns to see him for visit #4. Check out Corrines other blogs here as she brings up you close and personal with one of the most respected ME/CFS physicians in the US. Check out the beginning of the Corinne-Dr. Peterson Chronicles here)
Let me begin with a summary of my first three visits with Dr. P.
June 2009: I traveled by RV (my husband drove) because I was partially bedridden and wanted to “stop and smell the roses” along the way. This visit was stretched out over ten days and quite intensive, involving numerous tests including a lumbar puncture, MRI, Spect Scan, exercise stress test, 24-hour HR/BP monitor and multiple lab work. The entire trip took 17 days. I started on Procrit the following August. Recovery time: about two weeks.
February 2010: We traveled by car and hotel (my husband drove). Two days up, five days there, two days back. My tests were limited to numerous blood work revealing EBV (current reactivation), elevated HHV-6 antibodies, low IgG subclass 3, elevated IL-8 + IL-6, abnormal amino acid profile. Received my first gamma globulin and amino acid IVs from Dr. P. Began antiviral Valtrex in April and set up FreAmine IV (amino acids / electrolytes) and a weekly IV saline at home. Diagnosed with orthostatic intolerance (OI)(POTS). Continued Procrit injections twice a month with monitoring lab work. Recovery time: about one week. Started feeling better soon after starting Valtrex. Do not feel as “sick and poisoned.” I was able to go out to lunch for the first time in a long time!
September 2010: I traveled by plane for the first time in 30 years, accompanied by a friend for assistance. Continued to bring my own wheelchair and use it when necessary (at airport and after stress test). A repeat of the annual exercise stress test shows 20 percent improvement! The 24-hour BP/HR monitor showed improvement in OI symptoms. Blood work continued to show immune abnormalities (elevated IL-8, EBV, HHV-6 and low IgG subclass 3 (received another IVGg infusion before I leave). I managed the trip well in large part due to my friend’s assistance with driving, getting food, etc. Recovery time: minimal. Feeling much better overall. I attended a small Christmas party, assisted with my husband’s seasonal business, started driving close by and going out to lunch a little more. Continued same therapies as mentioned above, while including VSL#3, a daily, potent probiotic “prescribed” by Dr.P which has improved my gut motility and transit time. I have also started to achieve a much need weight gain!
Visit # 4 – May 2011 – “Driving Miss Daisy”
(An ME/CFS Moment:
This blog would be accompanied by awesome photos however the person, who shall remain nameless, in charge of the camera, accidentally drained the battery…and hadn’t packed the charger. Oops! ?)
I purposely schedule my appointment for April during my nephew’s spring break. My plan is to fly into Reno alone this time, joining my brother and his family who go to Incline Village (Lake Tahoe) every year to ski. In March, after all my reservations are made, I am told that Dr. P. will be out of town the week of my appointment and I will need to reschedule.
This is something one must get used to as a patient of this very busy and dedicated physician. Interestingly, however, the doctor actually ends up seeing patients that week because of a mix-up. But because all things happen for a reason, a family medical emergency results in it being very fortunate that I am indeed home at that time. The unfortunate part of rescheduling to May means no brother, no assistance. So now what? Here is where my organizational skills will come into play…big time!
First, because I am unable to drive myself due to the energy required, I will need a ride to the airport two hours from my home. My husband, because of an unexpected medical situation, is not able to drive for three months so the airport shuttle is my only option. Luckily, I find one in which I am the last pick up and will take me directly to the airport in two hours. I am also leaving at a convenient time that will get me there for my flight but not too early as to waste my precious energy waiting around. I am a bit scared, but from my last trip I am familiar with the ins-and-outs of the airport: wheelchair assistance (I’m not bringing my own wheelchair this time), the employees that are always eager to help, and the dos-and-don’ts of what I can and cannot bring. I fill my pockets with tip money, my huge purse with trail mix and feel confident that I can manage (well, kind of confident ).
My next concern is getting from the Reno airport to the hotel. Luckily, I have a cousin who lives in the area, ten minutes from the airport. Although I am landing on Mother’s Day and she is a mother of three, she is more than willing, in fact excited, about doing me the favor! We’ve kept in touch but haven’t seen each other in 12 years, so this will indeed be a treat.
Now the big question: Who will drive me from the hotel to Dr. P’s and to the lab and back each day? Who can I depend upon should I need more assistance? When inquiring to Dr. P’s office as to a possible driver to hire, I am given the name and number of someone who does this professionally as many of Dr. P’s patients do not drive. Although we speak and I set up my appointment dates with him, I also put into motion a back-up plan.
I have been communicating with a friend who, though he has met Dr. P. briefly in the past, has a vested interest in meeting him in a more informal environment, getting to see firsthand the doctor’s operation and perhaps getting to speak to him and, as he puts it, “pick his brain.” Seeing it as a “win-win” for both of us, I virtually beg him to meet me there and allow me to hire him as my official driver. Be Morgan Freeman to my version of Jessica Tandy…..you know, “Driving Miss Daisy.” He agrees! So that’s how Phoenix Rising’s own Cort Johnson becomes my Tahoe chauffeur .
Inhale/exhale….OMG! I am actually doing this alone! Two years ago I had been partially bedridden but today I am going to take this journey by my little ole lonesome self.
Was I really that much improved or was I kidding myself? Well, in four days I would know.
The month of March had been one of my best months in maybe ten years, however, the stress of the family medical emergency in April has set me back a bit. I’m not feeling as well. I know this won’t be easy, but it’s my only option. Seeing Dr. P. has become one of the most important goals in my life. I can’t stop now. I have seen a 20 percent improvement in the last year and I want more. It is that hope for more that keeps me focused.
Traveling is physically taxing, but the emotional support and encouragement I receive at every visit makes it well worth it. In 20 years of illness, I’ve never experienced a doctor like this…..one who has my back! It is addictive. It is all about hope, and hope is what Dr. P. represents to me.
Sunday’s 7:25 a.m. shuttle ride goes well although the driver does not approve of my feet resting on the armrest of the empty captain’s chair in front of me and next to him. How could he understand OI and the need to elevate my feet? At the restroom stop, I solve that problem by moving up to the captain’s chair, promptly reclining it andputting my feet up on the dash, then closing my eyes and relaxing the next one and a half hours. I am sure to leave him a nice tip when he drops me off at the airport:).
Arriving in plenty of time, the airline gets me a wheelchair and someone to push me through security, get me to the restroom, get me a bottle of drinking water, and drop me off at the gate with time to spare, but not too much time for me to get overly anxious. The flight is on time and goes well except for the bumpy landing which makes me too nauseous to eat when I disembark.
An airport employee with a wheelchair meets me and assists in getting me out to the curb where my cousin Traci promptly picks me up and takes me to my hotel, 30 miles away. Check in time: 2:30 p.m. At the mini-mart next door, Traci gets me two gallons of water to store in my room and a freshly made sandwich to keep in the frig for the next day. It’s been a long first day and it isn’t over yet.
I am not assured of Cort’s arrival until 5:00 p.m. and by the time we “meet and greet” and discuss tomorrow’s schedule, it is well past my bedtime. I hit the sack at 7:00 p.m. Day #1 is over but I’ve already pushed it.
Monday’s appointment with Dr. P. is scheduled early at 8:30 a.m. I drag myself out of bed by 6:00 (already dragging, not a good sign) so I can be downstairs for the complimentary breakfast before hitting the road for the 15 mile ride to Incline Village. Looking out the hotel window, I am surprised at the fresh layer of light snow deposited that evening. It is beautiful and brisk out, high 30′s. Flurries will continue the rest of the day and for me, the air is invigorating. Cort arrives on time and gets me to Dr. P’s with time to spare…..and in one piece I might add .
Seriously, I am so appreciative of having someone there whom I can trust and rely on in a pinch, not to mention the added benefit of sharing the same illness and the accompanying camaraderie that brings. I instantly know I made the right choice in drivers!
At the office, Dr. P., as usual, enters the room carrying my humongous file and asks me how I’ve been doing. I quickly bring him up-to-date. We never spend much time talking on the first day as he mainly focuses on ordering lab work and today is no exception. As usual, he does a quick palpation of my abdomen and then whisks me on my way to the lab, telling me “we’ll talk more tomorrow.” He acknowledges that the plane trip is physically tough, so he insists that I return for two liters of normal saline instead of the usual one.
On the way to the lab, I peruse the requisitions. Most are the same, but some are new….elastace for one and the fact that my cytokine panel is being done by the University of Miami’s Clinical Immunology Lab. The rest are repeats: CBC, CMP, C-Reactive Prot, IgG (subclasses 1-4), IgF-1, T&B gene rearrangement, EBV, Vit D, NK cell enumeration, function and toxicity, DHEA and numerous auto-immune indicators. Required donation? Fourteen vials of my precious blood!
While back at the office, they infuse my two liters of hydration and I munch on the sandwich I packed. I’m back at the hotel by 2:00 p.m., extremely exhausted, although the saline provides a mini pick-me-up. Emotionally I’m invigorated and obviously running on adrenaline. I go to bed earlier than usual, hoping to restore some of my depleted energy for tomorrow.
The sun is out Tuesday morning and the day promises to be warmer, in the low 50′s. My appointment with Dr. P. was originally scheduled for 3:45, however, the office called the previous week to reschedule me for 10:00 a.m. saying, “the doctor wants to be able to spend more time with you.” Ha! Good intentions indeed, however, as is often the case and for whatever reason, time is at a premium and our appointment is cut short.
I am really dragging this morning. Every day has been a “pushing the envelope” day and I am starting to fear what the consequences might be. However, I am focused enough to ask the doctor some questions (for those of you who don’t know, I acquired the nickname “Queen of Questions” during my first visit. ).
I hold a sheet of paper on my lap with notes, not in the form of questions… just scribbled reminders of what I want to ask. Much to my surprise, Dr. P. grabs the paper and skims it. It doesn’t take him long to say, “you’re going to have to clean this up.” ( young lady! (?) ). “Go ahead and clean this up and I will see you tomorrow at 11:30.
In the meantime, you can get your FreAmine IV today and your IV gamma (Gamunex) tomorrow before our appointment.” I am pleasantly surprised as the office staff had called me last Friday to say they were out of IV gamma and hoped the order would arrive while I was still in town. According to Dr. P., it is available for me to infuse, but according to the staff, there isn’t any!
In my original blog, I had referred to Dr. P’s office at times as “organized chaos” so I am unfazed and, not surprisingly, by 5:00 p.m. that afternoon, back at the hotel after my FreAmine IV, I receive a message that indeed the gamma infusion is on for 10:00 a.m.…like magic! Not only am I happy to be getting the gamma (as I notice a big improvement in how I feel for up to six to eight weeks), but Wednesday promises an additional and unexpected appointment, giving me extra time to talk with Dr. P.
Meanwhile, I have to re-write my note page in the form of intelligent, readable questions. In other words, for the first time in over 30 years, I have a homework assignment!
Wednesday morning is glorious. However, I’m not feeling equal to the beauty of this gorgeous day in the mountains. The temps promise to warm to the high 50′s and the smell of the pines is intoxicating (much to Cort’s disappointment as his chemical sensitivities are being a bit challenged though overall, he seems to be holding up well).
I am determined that adrenaline will get me through as I put one foot in front of the other and try to move forward. I save my “homework” for breakfast, re-writing and adding some new questions to my list. I arrive early for my IV gamma and lying on the exam table with the lights out, I try to rest and replenish my energy during the next hour. Dr. P. sees me last of his morning patients and is gracious enough to spend a lot of time with me.
Most of my test results are not back yet so some of our talk regarding my future is hypothetical. However, Dr. P’s next words set me momentarily aback, “I’d like you to participate in a drug trial.” Then he adds “But here’s the clincher. You would have to come back and see me in three months instead of six, because if you wait six, all of the spots will be taken.”
As we talk, I learn that his primary concern with me, and most patients, is immune modulation. When I ask, “If I lived nearby would I be an Ampligen candidate?”, he responds, “Without a doubt.” And though he suggests that there may be ways to get Ampligen at home and that the price has decreased to about $6,000.00 a year, he believes this new drug, which is a pill to be taken only twice a week (Ampligen is administered by IV), promises to be virtually side effect free and would be easier on me.
He also says that all participants will receive the actual drug so there is no chance of receiving a placebo. Participation will be free of costs (except for the additional travel costs?) but with the possible chance of having to pay for a very expensive yet effective drug after the trial has ended. He concludes with the statement that I don’t have to make any decisions right now (thank goodness because I can barely see straight!).
Q: Elevated IL-10 seems to be quite common in a lot of patients but I have elevated IL-8 instead. How do I differ?
A: IL-8 is believed to be a more inflammatory cytokine but stay tuned as the difference between the two is being studied.
Q: I currently receive one liter of IV saline once a week at home. When I feel the need for a little extra, can I infuse two liters (like we did here on Monday) at one sitting?
Q: I believe my OI is still responsible for a lot of my symptoms. Are there any drugs such as Desmopressin that might be of value to me?
A: I have found that saline hydration in conjunction with your Procrit injections to be the best treatment for your LBV (low blood volume) and OI.
Q: Why does using the computer trigger what I would interpret as intense brain inflammation?
A: That’s easy. Studies have shown the computer to trigger cytokine storms (ugh).
Q: When I am suffering extreme PEM (post exertional malaise), what’s with the nausea and the feeling of having to catch my breath?
A: All of that is related to your LBV and OI.
Q: Oftentimes my labs show low sodium. Significant?
A: Again, it is all related to your LBV and OI.
Q: Ok, so let me get this straight…my body is trying to eliminate sodium and with it, subsequent fluids so as to purposely lower my blood volume for whatever reason, we have yet to figure out?
(Aha! So that why we all pee so much!).
Orthostatic Intolerance - By this time, my cognitive dysfunction is major and I’m spacey as all heck, but we continue to converse for quite a while and thankfully, there is someone present who is a major help to this situation (more about that later). From our conversation, I pick up some interesting tidbits, such as why, years ago, I had to quit attending Mass because of almost fainting a few times. Dr. P. says he can’t tell me how many times he has heard that. “It’s quite common” he says.
Once again, it’s all about the OI and LBV and the difficulty in adjusting from kneeling to standing or sitting, etc. Of course, back when it was happening to me, I had never heard of OI so it is very interesting to finally learn what was really going on with my body.
There are many other things we discuss which you will (or have already) read in a separate story by Cort on this website. Yes, that’s the help I’m referring to. Dr. P. is most agreeable in including him in this long discussion. So the “win-win” scenario comes to fruition and I am free to mostly listen, while Cort pretty much takes the reins.
Dig Deeper: Check out: “Looking Forward: Dr. Peterson on CFS Research, Treatment and Hope for the Future”
Commitment - One of the most important things I take away from our conversation is the re-affirmation of this doctor’s dedication to this illness. He does sadly mention that after “us old guys are gone” he is not sure what’s going to happen. He gives us several examples of how little interest there is amongst his colleagues. Even though he may find ME/CFS fascinating, to others it is frustrating and patients are seen as taking up too much time and needing too much maintenance.
He says he is often questioned as to why he is so personally committed. “You must have a family member with it” he is often asked. He says he doesn’t. Then he adds “But that’s not to say that my patients don’t become like family to me.” (sigh).
Simmaron Research On a brighter note, he tells us about his new non-profit, Simmaron Research, Inc. and the projects he already has planned. Dr. P. is clearly excited about it and his excitement is contagious. It gives me new hope and after the statement about the lack of interest amongst other physicians, I silently utter a quick prayer – “May this man live a long, healthy life.” And then I give him a much-deserved hug .
Thank goodness Cort is completely in his element dominating the conversation because by the time we are done, I can barely think straight. Focus is unobtainable and it is almost impossible to walk a straight line. But the exhilaration of the last few hours keeps me alert enough to make it back to the hotel, thanking Cort for his amazing help and for “Driving Miss Daisy” the past three days. I crawl into bed by 5:00 p.m. knowing tomorrow will be a horrendously long day and wondering how in the world I’m going to pull it off.
Thursday morning I sleep in, which for an early bird like me is 6:30 a.m.. My plane leaves at noon so I don’t need to be picked up until 10:00. I eat a light breakfast, remembering the nausea upon landing Sunday. Traci is on time with her two youngest accompanying her. This is the first time I’ve ever met them so it is a treat even though I’m not much company.
Traci totally understands and is very helpful. In fact, she may have saved the day! When she picked me up on Sunday, she had mentioned that she and the kids always take Dramamine upon landing in Reno as it is notoriously bumpy. I contemplate trying it myself on the flight home, but being sensitive to many drugs and remembering how horribly sleepy I got the last time I took it about 35 years ago (pre-CFS), I am a bit cautious. Traci just happens to have some in her glove compartment and reading the box, this “non-drowsy” formula seems appealing. She tells me to keep the box and I contemplate the possibilities during the drive to the airport.
Once at the airport, I repeat Sunday’s procedure…wheelchair, assistance, restroom, water, tips. While at the gate with an hour to wait, I pop ½ tablet of the Dramamine.Upon boarding, I have yet to feel any negative effects so I pop another ¼ tablet. I don’t feel the least bit drowsy and the flight and slightly bumpy landing do not trigger any nausea! Great! One less thing to worry about on future trips.
Landing at 2:00 p.m., I wait an hour for the shuttle. I am beyond exhausted and haven’t eaten since 8:00 a.m. I pull out my trail mix and start munching. Not having napped for four days, and never one to be able to sleep on planes, trains or automobiles, I am secretly hoping the IV gamma will kick in like it has in the past…and soon! I try to shut my eyes on the two-hour drive home, but the shuttle driver is overly-friendly and doesn’t stop talking the entire trip. Oh my.
But I’m almost home and I can taste victory! The amazing feeling of accomplishment is already sinking in. I’m physically wiped out, but I’m emotionally high. Having taking the airport-to-door shuttle, I am dropped off at my home by 5:30 p.m. Home at last and I can’t wait to hit the sack! A quick check reveals husband and kitties all well, so after some hugs I throw my suitcase in the corner of the room, prepare for bed and jump in, physically depleted but smiling from ear to ear.
My recovery is slightly more difficult than the previous trip but it is to be expected, considering I did this virtually alone except for the driving. As usual for me, my PEM is delayed, this time about a week. I am hit with one really bad day, but because my amino acid IV is scheduled in my local doctor’s office that day, I force myself to take the ride into town though I am extremely weak. While there, I suggest a B-12 shot also, which my NP thinks is a good idea. I feel much better the next day although still weak and shaky, but continue to improve from there.
That is the biggest difference I’ve noticed since my measured 20% improvement back in September…recovery is quicker and those one or two really bad days don’t stretch out into five, six or more, like they did in the past. So as of now, yes I have improved, but that 20% seems to have leveled off.
I have not been bedridden for over a year however I realize that I must take the next step (immune modulation?) in order to see continued improvement. Because of that I am leaning towards the drug trial even though the idea of returning to Incline every three months seems daunting, especially if I have to go it alone and particularly intimidating if I have to take part in the exercise stress test which is coming up due next visit.
However the consensus of friends and family so far has been 100% ‘Go for it!” I have faxed Dr. P a list of questions regarding the trial and when I receive his answers I will make a final decision. In the meantime, I am recovering from the ordeal and am giddy with excitement when I consider what I accomplished.
This past year and a half has probably been the most emotionally trying of my life so just the idea that I have improved at all over that time period is amazing in itself. I want to remain humble, however the truth is I am extremely proud of my strong faith, positive attitude, resiliency, and the guts I tapped into to accomplish this trip. Not to mention how blessed I am for the support and encouragement I received from friends, (thanks again, Cort), family and the medical staff I rely on.
I cannot underestimate how much it means to me both physically and emotionally to be able to say that Dr. P is my physician. When I look back at the 20 years battling this illness I consider the completion of this last visit as a “mini-miracle” which fills me with hope for the future and even more giddiness when considering the possibilities that this new drug could bring….not only for me, but for ALL OF US! I promise to keepyou posted!
IgG subclass 3,still low; EBV still suggests current reactivation though the early antigen IgG has lowered from 5 to 3.6; Vitamin D is low again (although I have been taking 1,000 units per day for over two years); IGF-1 (insulin-like growth factor) is elevated. The very comprehensive cytokine panel from the Univ.of Miami reveals elevated IL-1 beta, IL-6 and IL-13 which according to Dr. P “is a rather characteristic pattern to see in postinfectious fatigue patients.” (Interestingly for the first time my IL-8 is not elevated but I am not sure if it is because of an actual change in my immune system or this different, more comprehensive test). My NK cell function and numbers continue to be quite low.
UPDATE: After recovering well from the trip, I experienced a very good month of June, almost as good as the March I mention in the blog. Waking up not feeling sick is what I consider a good day and June gave me 18 of those. No malaise, just a feeling of well-being….quite a gift. Also for the first time in 20 years I have gained weight instead of losing it…reaching my goal weight (gaining 6 pounds) over the last 10 months. I believe it might have something to do with the probiotic VSL#3 (better digestion?) and /or the FreAmine (amino acid IV drip)…whatever the reason it is most appreciated! I have decided to pursue eligibility to be in the drug trial and will be returning to Incline in August (the three months Dr. P requested). I will know more then….wish me luck!