A CFS Patient Sees Dr. Peterson: Part I by Corinne

Let me begin by listing my reasons for writing this.

to share my experiences with everyone who’s interested but may never intend to see Dr. Peterson.
To give some insight to anyone who might be considering making an appointment but may have concerns regarding what it may entail
To help someone prepare for a scheduled appointment to see Dr. Peterson

Becoming A Patient

Like many of you I had always dreamed of seeing a real, honest-to-goodness, CFS/ME specialist. Like most of you, over the course of 18+ years with this illness, I have vacillated between times of doing nothing medically with times of seeking out new treatment or alternative approaches. Usually after a disappointing expensive visit with yet another uninformed physician or practitioner I would throw up my hands, deciding it was all a complete waste of energy, time and money (E, T and $) and then spend another year or two resigned to just feeling awful and dealing with it.

My health had declined enough recently to kickstart me back into the ‘proactive ‘mode but this time I wanted to see one of the best. After some investigation and finding that most of the notable names were not taking new patients or had waiting lists 1 to 2 years long I decided on Sierra Internal Medicine and Dr. Daniel Peterson.

Realizing that he too had a long waiting list, I filled out the application they sent me, asked my GP to write a short referral, copied all my many medical records, wrote the required paragraph or two about myself and mailed it all back. I hadn’t even seen him yet and it was already overwhelming! Pacing myself appropriately it took two months to complete everything.

After mailing my package certified mail I waited and waited and waited and waited…there was not a word. After communicating with the office staff it was determined that my file had been received, however, due to the hiring of a new office manager and a three-month absence of the head nurse , I was told it would probably be best to refile. Yikes! Do it all again? Grrrr….I’d have to think about this awhile.

Meanwhile my headaches were getting so bad that my GP referred me to a neurologist. After making an appointment I was surprised to receive the phone call from his receptionist. He was calling to cancel the appointment- not reschedule but cancel! It seems that after receiving my records the neurologist decided he didn’t want to see me. Because I have CFS he didn’t think “he could help me because he knows nothing about it” said the receptionist. Are you kidding me? Now that was a first for me.

If I needed incentive to refile with Dr. Peterson this was it. I’d officially had enough with uninformed doctors. If I was going to spend my precious E, T and $ it was going to be spent at the top. Lo and behold after redoing the application I received a phone call within the week an appointment within the month. Wow!

But now the hard part. Like most of you traveling is very difficult for me. I am primarily housebound – so how could I manage a 1600 round-trip trek? Like most of you money is not easy to come by… how much would all this cost? More than anything I was excited but was also afraid…. How hard would this be on my health? Would I be able to handle the many tests I knew I’d be asked to take? Would Dr. Peterson require numerous repeat visits?

I ended up pestering the office staff was so many other questions that I felt uncomfortable bothering them with more. (In fact halfway through the first day of my visit I was labeled “the Queen of Questions” by Dr. Peterson’s exercise physiologist. Go figure J)

The Journey

“Queen of Questions” is not the only name I had been dubbed with by a medical practitioner. My G.I. practitioner called me her “high maintenance” patient. While she pretended to be joking I knew she was serious. Those of us with CFS/ME are indeed high maintenance. It’s one of the side effects of being chronically ill.

Because of this my best option for traveling is by RV and being fortunate enough to own one it was my vehicle of choice for the journey. Even though it was 25 years old, which gave my husband worries regarding the trek through deserts and over mountains, they (the RV and my husband ) accepted the job. With a fridge containing my favorite foods and beverages, my favorite pillows, soaps and shampoos, my wheelchair and earplugs all close by the RV was the only way I could imagine tackling the trip.

The beauty of this is that I had received permission from the property management company to remain parked in Dr. P’s lot for the duration of our visit. What a blessing! What turned out to be multiple visits to the office would now simply involve a short wheelchair ride from the RV to the elevator to Dr. P.’s office on the third floor. So on Tuesday morning, June 9^th, we hit the road. Six days and 800 miles later (we stopped to smell the roses on the way) we arrived in incline Village and parked our 27 footer in our designated spot. We’d made it!

Day One: the Office

The building that houses Dr. P.’s office is properly named the Centrepointe Building as for the next week it would be the center point of my life. I didn’t think I had any preconceived notions of what it would look like but when I saw the simple, rustic structure I was a bit surprised. After all, for me I was visiting a place that could be considered as equal in “awe factor” as Graceland would be for a rock ‘n roll buff or Cooperstown to a baseball fanatic.

THIS WAS INCLINE VILLAGE. THIS WAS THE OFFICE OF DANIEL PETERSON, MD. THIS IS WHERE THE MODERN ERA OF CFS STARTED IN 1984!!

In my opinion there should have been a “National Historic Place” plaque out in front. But even though there wasn’t, reading his name in the directory gave me goosebumps. From the day I was handed my first CFIDS Chronicle in 1991 Dr. P has been one of my heroes. Entering his office made my heart pound. I was so nervous that when the nurse took my blood pressure was it was skyhigh @ 110/75!!!! (Well, skyhigh for me :)).

Day One: Meeting Dr. Peterson

First Appointment

Not far into the first appointment I realized that I wasn’t going to have to say much. Having already studied my records and history Dr. P. didn’t waste time discussing minutiae. He immediately asked me two questions: first, “if I could take away just one of your symptoms what would it be?”, and second “If you could work again, would you?”. I found the first very appropriate but wondered about the second…. until he started mumbling something about “malingerer’s… ridiculous… who would choose to live on $1000/month”. It was obvious that after 25 years he was still frustrated about the ignorance of the public, medical community and the government regarding this illness. I knew instantly that I had found an ally.

It was also evident in the way he would speak to my husband, look him directly in the eye when explaining symptoms, tasks to be taken, etc. after all, I knew how sick I was and Dr. P. obviously completely understood that part of his job was to help my family understand. I can explain how validating it was in his presence. He gets it! A doctor who gets it! Wow! The miles traveled, the money spent, the money to be spent, the energy exerted…. it was already worth it.

The Tests

At the conclusion of my first appointment Dr. P. pulled out a pad and started writing up orders for tests…. many tests. Because many of his patients travel far to see him it was obvious he’d have practice getting in as many tests as possible in the short time we had. At first it all seemed a bit crazy but by the end I was using the term use to describe NCAA tourney basketball….”organized chaos”. Everything is coordinated to a tee and I was amazed at what was accomplished in eight working days (10 total) we were there.

Before I get into the individual tasks let me say this. Though I had a lot of running around (Incline-Reno – Incline – Reno) to have tests done when the Whittemore Peterson Institute (WPI) opens in Reno in 2010 I assume it will be closer to “one-stop shopping”. Want to see Dr. P.’s face light up? Just mention the WPI. He agreed that it will be a major advantage to someone like me to have the WPI is the place to go and have most everything done. Awesome!

As for me, my first stop was Labcorb just two blocks from the office. Here, about 15 to 20 vials of blood were drawn (nope, I’m not kidding). Some were for routine tests and others far more complicated viral (this was pre XMRV) and immune function tests. After that it was back to the office for the one test I fear the most… the Exercise Stress Test. I was scared to death. I was so nervous I couldn’t stop talking during the preparation part (this is where I earned the name “Queen of Questions”

Exercise Test

My test was performed on a stationary bike rather than a treadmill, though both are present. Though it “only” lasted eight minutes (short of the preferred 12), I won’t kid you it was hard. As my husband put it after “I haven’t seen her do that much in years”. It was true. As difficult as it was learned a lot and I’m glad I did it. And the truth is, the down time after was not as bad as I had envisioned. Later, I was given the results (I flunked!) My husband said to Dr. P. “She had a hard time with that test”. Dr. P. simply replied, “That’s why we do it”. Enough said. It’s important that our bodies are tested “under load”. Dr. P said that only 15% of the result can be attributed to deconditioning and that the real reason I scored so poorly was because of “metabolic poisoning”. For years I told my husband “I feel like I’m being poisoned”. Now I understood that, in a way, I really was.

After the test and was fitted with an overnight EKG monitor. I was very grateful that my RV was just a short wheelchair ride to the parking lot. Day One was over. It was about 4 PM.

Day Two: Dedication

Before I describe day two allow me to digress. When I was accepted as a patient I was told that new patient appointments on Tuesday at 9 AM. However because of complications resulting in the cancellation of my original appointment, was rescheduled for 8 AM the following Tuesday. So on that particular day Dr. P. was scheduled to see two new patients back to back.

Like most of you I have seen many doctors in the past most of whom it has been impossible to get an appointment with before 9:30. “Bankers hours” I call it. I’m a morning person so I always ask for the earliest one so when I was scheduled for 8 AM I was hesitant. I was assured that he would be there. I was also assured that two new patients in succession would work just fine. I know doctors. Most don’t appear real flexible when it comes to scheduling so I was not confident things will go smoothly.

By Day Two that had changed. Overhearing conversations between office staff I began to realize that this office operates to accommodate as many patients as possible. “So and so just wants his shot” I would hear or “Ok have them come in” etc. squeeze one in here, another there. On this day I overheard that there were over 40 patients! OK, so it didn’t always work perfectly. There were times I had to wait and one time my appointment had to be moved to the next day but the feeling I left there with was that this office and this physician were there for their patients not the other way around. And they’re all super friendly!

My first hint at Dr. P’s amazing dedication actually occurred two years prior. The office manager told me to call back on a Saturday to check on the status of my application because she said she’d be doing some work in the office. When I called the phone was answered with “Hello this is Dan”. I recognized his voice from the “I Remember Me” DVD and I was speechless. What was Dr. P. doing there on a Saturday? If you think this was possibly a fluke hold on a moment. From an RV in the parking lot one can observe a lot. It became a standing joke between my husband and I as we need breakfast seated at a dinette with a few of the lot…”the Doc’s here” my husband would say. By Day 3 I didn’t have to look at the clock to know that it was 7:25 am! Yes, 7:25 AM…. every day… even on the days (Wed, Thurs) that Dr. P. normally does not see patients as in the research lab instead. Hold on it gets better. The next Sunday was Father’s Day….:”the Doc’s here” I heard my husband say. Granted he ‘only’ stayed three hours that day :). I don’t know about you but there is a tremendous feeling of peace I possess knowing that there is even one Dr. working this hard and being this dedicated to conquering ME/CFS.

Back to Day 2… MRI – After having my EKG monitor removed I was off to Reno for my 1:30 brain MRI appointment. The drive on Mount Rose Highway to Reno takes about 45 minutes. It’s quite scenic but also a bit winding but my fears of motion sickness never developed. I was exhausted but took the energy to get out of the truck to snap some photos of gorgeous Lake Tahoe overlook secretly wishing I was well enough to join the numerous bicyclists on the road.

The MRI was on time and went well. The machine is state-of-the-art, twice as strong as any I had previously used. My advice: remove all your rings even though I was told I could leave them on. With my hands across my abdomen one ring started to burn my finger as the test began and a small blister formed a day or two later. We were packed and at the RV by 4 PM.

It was also evident in the way he would speak to my husband, look him directly in the eye when explaining symptoms, tests to be taken, etc. after all, I knew how sick I was and Dr. P. obviously completely understood that part of his job was to help my family understand. I can explain how validating it was in his presence. He gets it! A doctor who gets it! Wow! The miles traveled, the money spent, the money to be spent, the energy exerted…. it was already worth it.

Day Three (Thursday, Incline Village, NV)

Incline Village is a beautiful town that seems to have been able to retain its down-home feel and avoid the touristy atmosphere of some of the other towns around Lake Tahoe. As a result it was for a very quiet and relaxing the entire time even though we were in a parking lot. I believe the only hotel in town is a pricey Hyatt although there are many hotels 7 miles down the road in Kings Beach, CA. The weather was perfect for me the entire time we were there (2^nd week in June) with days in the 70’s and nights in the 40’s.

There are variety of eateries, the majority “Mom-and-Pop’ restaurants. I saw only two fast food chain establishments. The local market has a wonderful deli. There are parks, golf courses, a nice library, a couple of sports bars and, of course, some of the most exquisite homes you’ve ever seen along Lake Shore Drive. I’m sure you already know about the magnificent snow skiing. Suffice it to say if you’re healthy and able there are a lot of things to do here… most of them geared towards outdoor activities.

The SPECT (Note – brain images below are not from Corinne)

Today would be another full one. We would need to drive to Reno again for 10:30 AM brain Spect Scan, my first-ever, then return to Incline for a 2:30 appointment with Dr. P. (no nap today). This was the second day after my exercise stress test it was difficult to get myself out of bed. Not because of soreness, mind you, but of extreme weakness. My legs felt like cooked spaghetti. I had expected some muscle soreness, you know, the kind we used to get when we were healthy and worked out – the normal lactic acid sore “quads and hammies”. It never happened. I’m not one of the PWC/ME’s who suffers from a lot of muscle pain so someone else’s situation may be totally different, however, I still felt it quite unusual to use muscles I hadn’t used in years and not experience soreness.

Dr. P. agreed. We came to the conclusion that if I were normal, a.k.a. healthy, I would have produced lactic acid is a byproduct of ATP (energy) production. So what the stress test revealed was that I was not using the usual, appropriate ways to produce ATP. In fact, my heart rate never really rose significantly and I never felt my respiration get uncomfortable. Nor did I feel close to breaking into a sweat. As a former personal trainer this seemed weird to me. It made me wonder where my ATP was coming from – and no wonder I had so little of it (metabolic poisoning).

In reference to this Dr. P. made reference to the CDC website which still mentions exercise in the “treatment’ column and how this irritates him. He looked me in the eye and said “Exercise will make you worse”. If he was referring just to me particular I don’t know what I do know is that my body has been telling me the same thing for 18+ years.

Okay…back to the SPECT. If you’ve never had one, that me tell you this test was MADE for PWC/ME’s!! Other than the Chromium 51 Blood Volume tests I took two years ago, this one was as easy as they come. Example: the tech draws some of my blood and he leaves me in a darkened room, on a recliner… and covers me with a cushy blanket. So far so good. He tells me not to move, talk or open my eyes if I don’t have to…”OK”! He then tells me to rest for 30 minutes while he labels the blood with radioactive whatever. Then he says he’ll quietly sneak back into the room, re-inject the blood, and then tiptoe out leaving me to nap for an hour!! I can do that!! After the dye is set in my very relaxed brain I am brought out to lie down under a camera that rotates around my head and takes pictures for 30 minutes. Did I say it was going to miss my nap today? Not!

Decisions & an Irritating BP Monitor (Day 3- cont)

First Test Results: After the SPECT we return to Incline for my first appointment with Dr. P. since Day One. I’m curious about any preliminary results might have. He discussed with me my ‘failed” exercise stress test, results of the 24 hour EKG (heart rate is low), and how some of my blood tests – the general ones I usually have done annually – were normal, as expected. Oh, but here’s the clincher – the evidence he needs to convince me to do one more test; my brain MRI showed 10 to 12 “small punctuate signal changes involving the subcortical white matter” or more familiarly known as UBO’s (unidentified bright objects) – that many PWC’s exhibit. Reason enough, in his opinion, to do the “dreaded” lumbar puncture, better known as a spinal tap.

I’ve already mentioned that I had received little advice before I left on my journey.

SH said, “Remember, Dr. P. is a research doc. He likes to get to the point and is not inclined to “chit chat”. And remember to stay well hydrated. (Excellent advice considering the elevation, the amount of blood drawn, and the exercise test).
CJ said “Be prepared to have a spinal tap. I hear he loves to give them” (another reason to stay hydrated!)
MJ said “If he doesn’t recommend a lumbar puncture I would demand one. I would not leave there without one…who better to do it?” (Amen!)

So silently I was already resigned to the fact that I was going to do the dreaded L.P. but I suppose Dr. P felt the need to convince me and with the MRI results in hand he was chomping at the bit. I mean I could have MS, right? I knew I didn’t have MS and I told him so. I told him I’d have to think about it which made him ‘sweat’ a bit J.

Actually the real reason for the hesitation was time. This was Thursday and L.P. could not be done until Monday because of issues getting the fluid specimen to the lab in time. And then there’s the required recovery time – lying flat for 48 hours after the test. All of this required a big change in plans. We would have to remain in Incline Village an extra five days.

In the end, I took MJ’s advice (“Who better to do it?”). I could get it done somewhere at home but they would not take the amount of fluid Dr. P. takes and they would probably only test it for MS and other obvious infections, whereas Dr. P. would have examined for various viruses, lactate, amino acids, etc. and he would freeze the sample for future reference. His staff told me that he is one of the best and doiing the procedure (must be all the practice J). They smiled and added….” he also does a great colonoscopy!”

This was really the only difficult decision I had to make the entire visit. Dr. P. and his staff pretty much take control, unlike my experiences of the past 18 years where pretty much nobody did or suggested much of anything. Instead of blank stares, here I received goal oriented ‘organized chaos” and I pretty much sat back and held on for the ride. Besides, whenever anything became difficult (physically) I would remind myself why I was here and that it wasn’t only for me. I don’t claim to be a martyr or a guinea pig but my fellow PWC/ME’s who knew I was taking this trip told me numerous times that I was “doing it for them, too.” If there was any way my tests would add anything to the research WPI and Dr. P. were doing I was all for it. This is what gave me the strength to say “Yes” to the dreaded L.P.!!

Blood Pressure Monitor – At the end of day three, my husband wheelchaired me back to the RV with a 24 hour blood pressure monitor cuff attached to my left arm along with a small box that hung around my neck to record the results. Have you ever found yourself so totally fooled by something… something that you thought would be so easy and it turns out to be the biggest pain in the rear??? I never thought twice about it until I was wearing it. The cuff would inflate every 15 minutes during the day and then every hour during the night. Have you ever tried sleeping with a BP cuff inflating every hour? Ha! How about tossing and turning and making sure the box around your neck doesn’t strangle you?? And if that cuff inflates when it has slipped down to your forearm or when it has twisted enough that the sensor is on your tricep rather than your artery….”BEEP”….then a huge “E” shows up on the display. You know, like the big “E” the shortstop gets when he boots an easy ground ball – the big E. for ERROR! I can’t tell you how many big “E”‘s I got. Needless to say I did not sleep well that night after returning to monitor the next afternoon, I had three days to do nothing but rest and prepare for the dreaded L.P.

A CFS Patient See’s Dr. Peterson Part II

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