Corinne’s fifth blog of her visits to Dr. Peterson is her most comprehensive yet. First, an improving Corinne gives a summary of her work to date with Dr. P, then we get a blow by blow of her visit, and lastly the ‘Queen of Questions’ hits up Dr. Peterson with her long list of questions, and as always, he responds.
Let me begin with a summary of my first four 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!.
May 2011 : I took the trip all alone for the first time except for the driving. At Dr. P’s office I received Gamunex, FreAmine and saline IV’s on consecutive days, along with multiple lab work, as usual. My cytokine panel was sent to the University of Miami (Dr. Klimas) for the first time. Dr. P suggests I consider taking part in an upcoming drug trial. My test results: IgG subclass 3 still low; elevated EBV (EA IgG) at 3.6, down from the usual 5.0; subnormal Vitamin D; elevated IGF-1; elevated IL-1 beta, IL-6, IL-13 (but not IL-8 for the first time); NK cell continued subnormal in function and number; positive Sjogren’s antibodies. I continue with same therapies at home (Probiotic VSL #3, antiviral Valtrex, bi-monthly Procrit injections, and once per week saline and FreAmine IV’s).
My recovery from this trip involves the usual delayed PEM but there is only one really bad day. Happily, I continue to gain weight instead of lose, for the first time in 20 years. My digestion continues to improve and head pain seems better. June and July are pretty good months. I am continuing this routine since September: walking 200 feet to and from the mailbox every day, sometimes twice, along with an increase in activity overall.
Visit #5: (August 2011)
Boy, three months sure flies by. It’s already August and in order to maintain eligibility for the drug trial, I’m preparing to return to Incline Village to see Dr. P… alone, again…but this time, totally alone. Cort is kind enough to promise his assistance again should I need to do the exercise stress test, knowing I am a bit concerned about being there alone while having to tackle that physically taxing and well-named ordeal.
In the past, this test has left me “noodle legged” and weak. In fact, after my first two tries (June 2009 and September 2010), my wheelchair was used to help me travel distances that required walking more than a very short distance. Because it is one month short of a year since my last test, I suspect I may be required to do it; however, I call Dr. P’s office to find out for sure. I am told there is no need for the stress test this visit (relief!), thereby letting Cort off the hook, who promptly schedules a vacation.
Without the need to “exercise” I feel I can do this alone. Trust me, I have my moments….times of doubt (who will get me lunch everyday?)…and fears (will I be starting the drug trial?)….and thoughts of “what if” (what if I need extra help?). But I have no choice so I focus on the weather there and how beautiful Lake Tahoe will be in August and I plow ahead.
Day 1: (Sunday) “Wind Sprints”
My flight to Reno is early, 8:25 a.m., and since the airport is two hours away, I must take a 4:45 a.m. shuttle to be sure I will get there on time. I’m an early bird, but this means getting up at 3:30 a.m.! I set an alarm and though I get up on time, I have mistakenly underestimated the amount of time needed to prepare (feeding the cats, cleaning the litter box, fixing breakfast, making sure I don’t forget my meds and toiletries, etc.). I am still dressing when I hear the knock at the door! I’m late…and I’m never late! This is not a good way to start the trip.
After a quick goodbye to a still sleeping husband, I’m in the shuttle apologizing to the driver and the other two passengers. They just smile and tell me they were intrigued watching me (my entire south wall is windows) “do wind sprints back and forth from one end of the house to the other.” The visual amuses me, but the idea of having already expended all that energy in the first few minutes of a long, strenuous day makes me uneasy. I hope this is not indicative of things to come. I am asked by the couple where I’m headed. I say “Reno.” “Wow” they respond, “what sends you to Rio?” I smile….”No. Reno, Nevada…a doctor.” ?
Thankfully, the ride to the airport is smooth and arrival is in plenty of time. This is my third trip by plane so I have the procedure down. Using the airport wheelchair with assistance, I am “parked” at the gate where I down half of a “less drowsy” motion sickness pill (my most recently discovered asset) and wait to board. Everything is on time so I land in Reno at the scheduled 10:00 a.m. time where one of my most treasured assets, cousin Traci, picks me up at the curb, once again dependable and on time. Along the way to the hotel we stop for an early lunch at a drive-thru so I am checked into my room by 11:30 a.m., with the entire day and night to rest. After confirming my 7:30 a.m. pick up time with my hired driver, I turn on the TV to watch a baseball game and settle in, tired but glad I made it!
Day 2: (Monday) “Surprise, Surprise, Stress Test Required”
My appointment is scheduled for 8:00 a.m. so after eating the hotel’s complimentary breakfast, I park myself by the front entrance to keep a lookout for my driver, aware of what type of vehicle he is driving. 7:30 comes and goes and he still has not arrived. He calls to tell me he is lost. Lost? I hire a local and he’s lost? We conclude that he is on the correct highway but has mistakenly passed the hotel. I admit the entrance is easy to miss and the hotel is set back off the highway, so I just laugh and give him “a mulligan.” I call Dr. P’s office and tell them I’ll be late but they inform me that my driver has already done so! Nice! Eventually we arrive, so all’s well that ends well.
I am immediately taken to an exam room where I end up waiting awhile anyway….. Dr. P enters smiling from ear to ear about to ask me how I’ve been doing but I’m so excited I deny him the chance. I had just been weighed in, so I start rambling on about how I can’t believe that I’ve reached, and actually surpassed, my target weight, gaining seven pounds since last September, and how excited I am to have gained weight instead of losing it for the first time in 20 years!
Somewhere amidst my jubilance, I hear him utter “that’s cool.” That’s cool? Did Dr. P just drop a “that’s cool” on me? He smiles and hands me my lab slip even though I had just completed a ton of labs here three months ago. After I tell him how good June and July have been, he leaves the room and tells me to return for my Gamunex and saline IV’s after the lab, and that he’ll see me tomorrow. Within minutes my driver has me at the lab where today’s donation is about one-half of the usual (only seven vials of blood and one UA).
Back at the office, at 11:00 a.m., I receive my Gamunex followed by a liter of saline. Total IV time: one and three-quarters of an hour. It is during the infusions that the bearer of bad news arrives in the form of Nurse C. Poor Nurse C. It seems she is always the one who must break the news: “The doctor wants you to do the treadmill.” “WHAT?! NOOOOOO!” I go on to explain that I had “released” my help from having to meet me here after I called to confirm I would not be required to do the stress test this time and that without help, there was “no way in Hades” I was going to do it (that was my first reaction anyway).
Nurse C relays my message to Dr. P and returns saying, “He just wants to keep you eligible for the drug trial and he is afraid if you wait until the next visit, you could miss that window of opportunity.” She leaves it at that, leaving me to contemplate the circumstances and alternatives while my saline IV is infused over the next 35 minutes. I bounce the idea back and forth in my head, and with no one to converse with, no second opinion available, it’s all up to me.
If I decide to do it today, the only time available is 3:00. It’s 1:00 now and I’m exhausted. Late afternoon is the worse time of the day for me, so I never attempt anything physical after 1:00 or 2:00 p.m. Attempting an exercise stress test seems ludicrous, above and beyond torture, but I also do not want to mess up my chance to participate in the drug trial. The longer I lie there, the more I seem to talk myself into it…but how about tomorrow, after at least a night’s rest?
After negotiating with Nurse C, she and the receptionist put their heads together and work magic! Juggling the schedule, after switching times with another patient’s permission (thank you whoever you are!), they schedule me for 9:45 a.m. tomorrow morning. A quick call to my driver (who thankfully knows where to get the best deli sandwich in town and who has agreed to have one for me when he picks me up at the end of each day), and I’m back at the hotel by 2:30. I am exhausted and weak, with sandwich in hand…hoping and praying I will feel better in the morning.
Day 3: (Tuesday) “The Test”
I awake feeling….well, icky. Not good, but probably better than I felt at 3:00 yesterday. I think so….at least I try and convince myself of that. My driver says he will pick me up at 9:00 to get me there in plenty of time so I don’t have to rush. Sitting in the lobby anxious and nervous, 9:00 comes and goes, as does 9:15….9:20. He’s late again. When he shows up I just smile as he tries to explain why. He manages to get me there by 9:50 and actually, the timing is perfect as the exercise tech has just finished up with someone else. Remembering how I was late for the airport shuttle, I’m realizing that “late” has become the theme of this trip. ?
It’s my third stress test, so I know the routine, the forced hyperventilation to measure lung capacity prior to the actual test itself, the “gluing” on of electrodes, and the required signature on the Informed Consent Form which causes me to giggle. As a certified fitness professional prior to ME, I used to administer these tests to clients and fire department personnel so I know what the form says. Simply stated, it says “I have informed you that this test could kill you and we need your consent to run it.” ? Too funny. As I sign, I’m reminded that I am here alone which is a bit scary when I think about it, but hey, the tech reminds me that the hospital is only two blocks away. We both laugh. Why not laugh because the next ten minutes will be tough enough as it is.
My last stress test happened to be my first time on the treadmill. This time, I feel a bit more comfortable and as the warm up starts, surprisingly, a bit stronger also. I’m actually surprised at how strong I feel. I stare straight ahead, looking out the window at the beautiful sapphire skies and matching Lake Tahoe, trying to focus on how lucky I am to be here. It’s supposed to be 75 degrees today…awesome!
Then another thought creeps into my head: this is hard! I’m pushing myself way past my normal activity level…. and I’m here alone. How will I feel tomorrow, the next day, the day of the plane ride? Two minutes pass, five minutes, eight minutes…. the speed and incline are both increased and I’m pushing harder and exerting more effort than I would normally total in one week. Filled with envy, I cannot help but picture Cort lounging around in some hacienda, margarita in hand, while I’m being tortured! As consolation, the thought crosses my mind that perhaps the scent of some exotic blossom or the lime/tequila combo is triggering in him a chemical sensitivity attack…, and before I know it, the test is over.
The tech is able to give me some feedback: I reached my target, so this time the test was not cut short of my goal; my heart rate reached 134, whereas last time, it hit only 112. My VO2 max reached 21.6 ml/kg/min., another improvement! (In June 2009, it was 16.6; September 2010 it reached 18.4). Now, off to my appointment with the doctor!
Waiting for Dr. P, I’m hooked up to my FreAmine IV. When he enters he seems ecstatic. First, he emphasizes the importance of keeping me eligible for the drug trial, then he smiles and tells me I improved another ten percent of which he says as he pats me on the back, I should be “extremely proud.” He goes on to say that this measured improvement can be attributed to nothing but the fact that I have gotten better.
Those who have read my last blog from May 2011 remember me saying that the 20 percent improvement I had experienced to that point seemed to have tapered off or hit a plateau. Well, I guess I was mistaken. I now have proof that I have improved 30 percent overall (10 percent more since last September) with no change in my treatment protocol.
Dr. P emphasizes that measured improvement like this is what doctors love to see, so he agrees to send the results, along with a letter, to my PCP and NP at home, hoping to encourage them to continue supporting me in my treatments (IV’s, etc.). Dr. P gives me kudos for remaining consistent with my IV’s saying that my adherence to his protocol is a very important component of my improvement.
He adds that my VO2 max of 21.6 means I have passed that critical number of 20 which means I should be able to consider taking short walks. He emphasizes “nothing major, nothing rigorous.” For someone who has been totally and completely exercise intolerant for 20 years, that’s exciting news. When I tell him that I have been walking daily to and from the mailbox, oftentimes twice, he says “well then, maybe that is what you should continue doing.”
After all this encouragement, I am pumped! (post-stress test and pumped?!). I have Dr. P’s full attention so I pull out my list. It’s time to ask some questions! (His answers are from memory and not quoted).
Q. For the first time, my cytokine panel was done at the University of Miami and for the first time, it did not show elevated IL-8. Significant or was it because of the lab?
A. Significant. Good news. Another sign of improvement and it’s not because of the lab.
Q. I tested positive for Sjogren’s antiibodies, significant?
A. No. A lot of patients do.
Q. Elevated IGF-1 (insulin-like growth factor), significant?
A. Yes, more good news actually. Not sure of the reason but may be the amino acids (FreAmine).
Q. Although I am feeling generally less “sick and “poisoned” why do I still have a narrow envelope re: rest/sleep and still require 13 hours a day?
A. We’ve got a ways to go. We’ll be working on this for a while.
Q. Return visit? When?
A. I’d like to see you every two months (my eyes open wide)…but before you get “crazy” (he smiles), it’s because of the Gamma. If we can figure out how to get you the Gamma at home, I would be fine seeing you every four months (three times a year).
Q. My EBV early antigen IgG has decreased from 5.0 to 3.6. Significant?
A. Yes. Another improvement.
Q. Last time you tested me for elastase, what is it? Results?
A. It’s another inflammatory marker. Yours was normal.
Q. Immune modulation vs. antivirals. Do you actually see NK cell function and numbers increasing on their own with enough reduction in viral load (antivirals)?
Simmaron Research – When the question and answer session is complete, he asks if I would be willing to speak with Gunnar from Simmaron Research, Dr. P’s non-profit. He says he would like me to take part in some studies if I so desire and Gunnar is the one who screens the participants. I agree to this. Dr. P then leaves the room saying he’ll see me tomorrow.
After my amino acid IV is completed, I’m hooked up to a liter bag of normal saline, my second in as many days. While being infused, Gunnar and I discuss the upcoming Columbia University study and the future Chimerix drug trial (both of which you can read about on the Phoenix Rising website). My impression of the Columbia University study is that it involves collecting data, data and more data (blood, spinal fluid and a two and a half hour questionnaire) from Peterson cohort patients of which he informs me that I must be one or Dr. P would not have asked him to speak to me. When I applied to be a patient four years ago, I was hoping I would fit into the “typical subset” (the Peterson cohort), hoping that this would help convince Dr. P to accept me on as a new patient. But it wasn’t until this very moment that I realized I actually did fit into that group.
After my IV, as I walk out to the parking lot (no wheelchair this time!) to meet my driver and my sandwich, I notice that my legs are not rubbery or weak like they had been after my last two stress tests. Wow! I have gotten better! ?
Day 4: (Wednesday) “Flexibility”
Ok, so what’s new? My driver’s late again….and he’s out of mulligans. This time it’s road construction he says. He is excused, as yesterday he earned some major brownie points. He actually went into Rite Aid for me and replaced my bottle of makeup foundation that had fallen on the hotel tile floor and shattered. Awesome! (and I was afraid I would be desperate for help). ?
My appointment with Dr. P is at 9:30 a.m. and while I wait, I receive yet another liter of saline. Hopefully, it will help with stress test recovery and my flight home the next day. After about an hour, Nurse C informs me that the doctor would like to know if I could come back tomorrow instead, as he is waiting for more of my test results to come in. I have a feeling that perhaps he just has a very busy day of meetings and would like me to reschedule. No matter, I’ve grown accustomed to the flexibility needed to be a patient of his, so unfazed, I agree.
He knows I have a flight to catch so he agrees to see me at 7:30 a.m. After a couple of phone calls, I get the ok from my driver and from cousin Traci who will now be required to pick me up at Dr. P’s office instead of the hotel in order to get me to the airport by 9:30 a.m. (my flight leaves at 10:30 a.m.). Such great cooperation from both allows me this flexibility and it is very much appreciated. I am driven back to the hotel where I munch on yet another delicious, huge sandwich, write up more questions for Dr. P, make a few cell phone calls, pack my bag and rest up for what promises to be a long day tomorrow.
Day 5: (Thursday) “A Butterfly with an Attitude.”
My driver promises to pick me up no later than 7:00 a.m. knowing that the timing this day involves a flight home. He even agrees to a 6:00 a.m. wake up call from me. Nevertheless, he is late. At 7:33 the office calls to check my status and luckily, we are close by. I am in the exam room by 7:40 a.m. Dr. P enters at 8:00 and for the next 35 minutes, he answers more questions and we talk.
Second Round of Questions
Q. How does November work for my next visit?
A. Perfect! That will be after the September and October conferences so I will have a lot of new information.
Q. Lately, I’ve been waking up at night after five hours of sleep, wide awake and unable to go back to sleep. Can I take a little extra Klonopin at that time?
A. I actually like to hear that from patients. To me it suggests that your brain is “waking up” (healing?). But yes, when it gets bad, you can take a little extra Klonopin.
Q. Should we talk about Ampligen or are we focused on waiting for the drug trial (antiviral)?
A. We’re waiting for the drug trial.
Q. The FreAmine IV, how is it helping besides providing amino acids?
A .Basically, that is it. And amino acids are brain food. It is providing brain food.
Q. Should I continue taking the probiotic VSL#3?
Q. Have you already done the labs here that I need in order to take my Procrit injection this Sunday, or do I have to do my labs Friday at home?
A. (Laughs.) Actually, that is a very good question. I can tell you’re getting better as you would have not asked that before (smiles). No, you don’t need to do more labs, you’re set.
I sit there a bit perplexed. After all, I am officially the Queen of Questions so I am thinking…if he considers this last question as one of my best, I’d hate to think of what he thought of the others! Dr. P then writes me a prescription for Gamunex to see if by some chance I can get my Medicare Part D to cover it when I get home. And I’m on my way by 8:35 a.m.
But before I leave, Dr. P and I have a brief “heart to heart.” I thank him for what he has done for my health and for his encouragement and support. I’m a bit emotional when I tell him I feel like a butterfly (ok, maybe a moth) emerging from its cocoon. He smiles and nods. He, in turn, tells me that it’s my “attitude” that’s been a major factor in my improvement. Among other examples, he says “I tell you what to do and you do it.” Hearing that means a lot to me. It makes all the hard effort, leg work and flexibility worth it.
Grabbing my carry-on bag, off to the parking lot I go, smiling from ear to ear. Within minutes Traci pulls up, dependable as always, and off we go. Luckily, I took one-half of a motion sickness pill about 45 minutes ago because from Dr. P’s we must take the winding and curvy Mt. Rose Highway over the mountain to the airport. Because of the pill, I can enjoy the ride, noticing what an absolutely gorgeous day it is. With a forecast of 80 at the lake, I seriously wish I could stay.
The drive is uneventful and I’m at the curb by 9:30 and at the gate by 10:00. After popping another half pill, I’m ready for the flight. We land about 15 minutes late, but a quick call from the wheelchair has my husband Joe at the curb just as I am being wheeled out, with a still warm chicken burrito waiting for me (this surely beats waiting for a shuttle home). As I jump into the car, I realize it has been 48 hours since the stress test and my normally delayed onset muscle soreness has not happened. Last time, my quads were extremely sore, while this time I don’t even notice. Wow! Amazing! If “attitude” can do that…..bring it on! ?
CONCLUSION: “Making a Difference”
Before I left for the trip, I listened to an old cassette tape I owned of a talk Dr. P gave in Phoenix, AZ in 1991 (only months after I became ill). Overall it was revealing to be reminded of how much has changed, but also how much has remained the same over the last 20 years. One thing that particularly stood out to me was when Dr. P explained how ME/CFS is a “whole family illness” that affects not only the patient, but the entire family. He goes on to say that “the saddest thing I see is when one of my patients shows up alone.”
I had never thought that would be me, but for this last visit, it was. The more I thought about it, the more I realized that as long as he is my doctor, I’m not really alone. He gives me all the support and encouragement I need to even consider attempting these trips solo. And the good news about being alone is that it means I have improved! How else could I have managed doing this?
My recovery time has been excellent so far. I’ve had one “bad” day, the Sunday after I returned home. I woke up that morning feeling like I had been hit by a truck. My whole body ached and I yawned all day long…”where’s the oxygen?” my brain seemed to be asking. Still, it wasn’t enough to keep me in bed or even in my PJ’s and it only lasted the one day.
It’s amazing to think of how many days I spent bedridden per month prior to seeing Dr. P. Looking at it day-by-day (Point A, to Point B, to Point C, to Point D), the improvement seems incremental and barely noticeable but looking at the big picture (comparing Point A to Point D) really puts it in perspective. I’m far from “normal” but as Dr. P puts it “we’ll be working on this for a while.” I am still very limited, but at least I can see myself moving in the right direction. ?
I’d like to add one more thing. In our conversation on the last day, after Dr. P complimented me on my attitude, I remarked that I had realized early that being flexible was a necessary part of being a patient of his where, at times, I had termed the operation of his office as “organized chaos”. Smiling, Dr. P remarked that that was, in fact, his goal for the WPI…to end the “organized chaos” environment. He said he’d envisioned it as a place where patients could get an MRI, Spect Scan, etc. in one part of the building; a lumbar puncture in another part; have lab work done in yet another part; I.V.s and appointments down the hall; lunch in an onsite cafeteria; relax and mingle with other patients in a comfortable lounge; or sit outside on a deck and enjoy the view.
He continued saying with a hint of sadness in his voice, “But I’m realizing that I probably won’t see that happen in my lifetime.” Instead, he suggested that he’s left with treating just one patient at a time, knowing that this is not the ideal way to conquer this illness, but also knowing that it’s his only choice at this point in time.
He seemed disheartened by this fact, so I quickly reminded him of the story of the starfish….thousands stranded on the beach waiting to die, while a little girl slowly puts one at a time back into the water. When a bystander comments, “Why bother? There are too many. You’ll never make a difference,” she replies, “I made a difference to that one.”
I then thanked him for making a difference to THIS one and silently hoped he was wrong in assuming he’d never see his “dream” come true.
IgG subclass 3 remains low. Amino Acid profile shows some continued abnormalities. Surprisingly, for the first time, NK cell % and function (lytic unit) have both increased and now report in the “normal” range. However, total T Cell and NK numbers (absolute count) remain low. Immunobilan Panel shows continued “intestinal dysbiosis” (large numbers of “bad” gut bacteria) though I do not exhibit any dysfunctional intestinal symptoms.
My treatment protocol remains the same…at least until my next visit in November.