(Corinne returns for her second Followup visit since her first visit to Dr. Peterson in Sept. 2009. She had been on a protocol consisting of saline IV’s, amino acid IV’s, procrit, probiotics and Valtrex since April, 2010. How has this former fitness instructor but now mostly bedridden person with ME/CFS been doing?….Let’s find out!)Yes, I was ready to try it this go around….flying to Reno. Without the comfort of the motor home, nor the familiarity and flexibility of a car, I decided that this time, I would make the jaunt by air. It wasn’t really obvious yet, but something inside told me I had improved enough to handle it. However, flying for the first time in 30 years, I had many questions prior to preparation. My first concern was assistance: finding someone who could accompany me and help with the unknown challenges of flying, along with the driving required to and from the Reno airport to the hotel (30 miles one way) and to and from Dr. P.’s office (15 minutes one way).
Luckily my dear friend Audrey volunteered. She too is a PWC but is more functional than I. However, her osteoarthritic hands made her questionable for the driving part. She assured me she would be up to the task, so I purchased our tickets then reserved a rental car and hotel room while leaving the other details to her. She assured me that she is a “great traveler” and would take care of the snacks and supplies we would need to make two traveling PWC’s as comfortable as possible.
A year earlier, I would have been anxious and worried about flying but now I was so excited about seeing Dr. P. again, I was able to look at the plane as the instrument to get me to him. In other words, I was focused on the destination, not the trip. My only scare occurred less than two weeks prior to leaving.
Audrey’s husband, Fred, wrenched his knee and it was significantly swollen. If he were unable to drive, she was going to have to stay home to get him to and from work. I frantically began searching for another assistant without success, but thankfully, Fred’s knee improved enough that by the time we were scheduled to leave, he was walking and driving well enough to manage alone. My dear friend was geared up for our trip.
My husband, Joe, who was not available to accompany me this time, was however, able to drive us to the airport two hours away. He also would be available to pick us up when we returned four days later. Our plan was to arrive in Reno on Sunday, with my first appointment with Dr. P. scheduled for early Monday morning. My second appointment was scheduled for Tuesday. I assumed that with labs and IV’s scattered amongst the three days, that four days (five nights) would suffice based on my previous visit in February.
Prior to leaving, I had been reassured that wheelchair assistance was readily available at all airports: the airlines provide the wheelchair assistance while one is at the airport. You can make this request when purchasing a ticket, however, my concern was, would I need a wheelchair once I was in Tahoe? If so, I would need to bring my own. Suspecting (and fearing) that perhaps I would have to redo the dreaded exercise stress test, I opted to bring my own wheelchair.
I was so excited to be returning to see Dr. P. that the airport/flying experience turned out to be a pleasant one. Once at the airport, Audrey checked in her baggage (loaded with healthy snacks and treats), while I chose to carry mine on board. Aud proceeded to push me in my wheelchair through security and to our gate. The airline would have provided someone to do that, but once again Aud assured me she was up to the task.
The wheelchair (and me in it) actually became an asset. Our carry-on bags and purses were piled on my lap so Audrey’s hands were free to push while I became the “baggage carrier,” tall enough to peak over the top for a view of where we were going. After purchasing plenty of water, we were the first to board (an automatic advantage when using a wheelchair) and with only a half-full plane, we were able to sit with an empty seat between us and spread out.
Audrey and I complimented each other perfectly as I wanted the window and she liked being on the aisle. I wasn’t sure how the motion of the plane would affect me but I knew that being able to see the horizon while moving would be advantageous should I feel queasy. As it turned out, I felt fine with only momentary instances of disorientation with the first movements of the plane. I definitely enjoyed the view, especially of the beautiful Sierra mountains, the backbone of California, where a little over one year earlier, Joe and I were in our RV driving and camping along their base on my way to my first visit to Dr. P. This was indeed a new perspective. Our 1 hour 45 minute flight was uneventful and we actually landed ten minutes ahead of schedule!
By now it was my nap time, but I was doing fine and after getting our baggage, grabbing lunch, renting a small SUV and driving to the hotel, it was only 1:30 p.m. We had plenty of time to watch some football and rest up for the next days.
Like I said, Audrey and I complimented each other well. I go to bed by 5:00 p.m. L, she goes between 6:30 or 7:00 p.m. I get up at the ungodly hour of 5:00 a.m., she is up at 4:00 or 4:30 a.m. Are you kidding me?!…No problem, I wear earplugs and she is very quiet. However, it was the aroma of freshly brewed coffee that became my alarm clock every morning. Thankfully we were both early risers…at our best before noon.
My first appointment with Dr. P. was at 8:15 a.m. The drive was 15 miles of beautiful scenery and easy driving. As we walked from the parking lot to the elevator, we saw Dr. P. pull up. Hmmmm….it was later than his usual 7:30 a.m. arrival. He proceeded to enter the elevator with us, his usual shy and quiet self.
He was, however, with a very talkative colleague who he introduced to us as Dr. Chamberlain. Over the next few days, we would run across Dr. Chamberlain multiple times. As Audrey was unable to remember his name, I recommended she associate it with Richard Chamberlain, the actor. Well, as word associations go, Dr. Chamberlain became Dr. Kildare from then on! J
As usual, there was a bit of a wait before Dr. P. made it into the exam room. He immediately noticed that I was with a friend so I excitedly told him that we had flown into Reno and, “it was a breeze.” His reply? “That’s because you’re getting better. You know that don’t you?” I don’t think I was convinced until that moment. I thought, I must be, so I answered “Yes!”.
He started talking about the things we had discussed during my last visit as if it had been only seven days ago, rather than seven months. He remembered everything. He either takes great notes or has a great memory, or both!
For the first half hour, we discussed what he called my “psycho-social stress” – the personal issues which have been extremely difficult for me. He assured me that we would not be using up time talking about it if he didn’t believe it was very important to my health. He spoke to me as a friend rather than a physician, giving me advice when asked. We laughed, I cried and we high-fived! It was quite touching. Gee, I was high-fiving Dr. P.!
He followed up our visit with the usual list of labs which he handed to the nurse as he left, assuring me we would talk more the next day. Like always, Dr. P. leaves it to the “poor nurse” to come in and announce that “the doctor would like you to do the stress test again.” Noo-o-o-o-o-o-o-o-o-o!!! I begged and begged and begged. Poor Nurse C., if she’s heard it once she’s probably heard it a million times: excuses, excuses, excuses. I thought, how smart of Dr. P! He doesn’t want to listen to my whining so he has the nurse do the dirty work!
Nurse C. was kind enough to present my excuses to Dr. P. (or pretend to J) but she soon returned, sticking her head in the door saying with a smile “the doctor said you have no choice. It has been over a year.” Okay, Okay. Even though I was scared to death to do the stress test and then have to fly home in a couple of days, in some strange way, I was actually curious as to how my improvement would actually measure. We scheduled the torture for the following morning.
I left the office and went directly to the lab where the usual 12 to 15 vials of blood were drawn, along with two urine samples. Afterwards, I returned to Dr. P’s for a gamma globutin IV, my first since my last visit in February, 2010 (as I mentioned in my last blog, I was unable to find anyone locally who would administer them). This was my first time in his new infusion room, complete with nine recliners! Aud had packed me a delicious custom-made sandwich from the mini market next to the hotel. I ate while I infused. We returned to the hotel by 3:00 p.m. where I went straight to bed to rest up for tomorrow’s exercise stress test.
My exercise stress test was scheduled for 10:00 a.m. It was a brisk morning, about 40 degrees. The days warmed up to a gorgeous, sunny 70 degrees, but I couldn’t focus on the perfect weather as I was worried about how I would handle the strenuous test. The tech that administered the test was relatively new. She was not the one who did my last one, which was on the exercise bike.
As you may remember, I failed it miserably, terminating it early after only eight minutes and recording a very low V02 max. I reached only 50 percent of the predicted result, which categorizes me as being severely disabled.
This time, the tech received permission from Dr. P. to test me on the treadmill instead. Believe it or not, even though I had been a fitness instructor and personal trainer in my “previous life”, I had never been on a treadmill. After all the pre-test preparation (inhaling and exhaling into a tube to record lung capacity, etc.) I tackled the treadmill.
It took a minute or two to get used to walking on a moving floor, but I soon found a comfortable stride. After a couple of minutes the speed was increased, then the incline. After every 30 seconds, one or the other had to be increased. The tech asked me what I preferred, an increase in speed and a maintenance in incline or a maintenance in speed and an increase in incline. I had no idea what to say! It had been so long since I had been able to exercise I had no idea which I could handle better. Now if only one of the choices had been a decrease in anything, well then, that question would have been easy to answer. Unfortunately, it was not. ): In the end, I chose the steady pace and the increased incline instead.
Of course, it wasn’t long before I was leaning on the handle bars…then the console. I had flashbacks of me telling my clients of long ago to “stand up straight, don’t lean on the equipment.” Ha! Now I know how they felt. At eight minutes (my total time last test), I was asked if I could go another minute. I nodded yes. At nine minutes I was asked if I could go another 30 seconds. I reluctantly nodded yes. At nine and a half minutes I was asked if I could go another 30 seconds. I barely nodded yes, but by now my legs were burning so badly that I was leaning heavily on the console and…oops!…I accidentally leaned on the big red “stop” button which brought the treadmill to a sudden halt!
Good thing I knew from my fitness training that I needed to cool down slowly so I continued marching in place until I felt my heart rate slow considerably. Although I didn’t actually register ten minutes because of the error, I felt I had gone ten minutes and was very proud. I must say my friend Audrey was a great help. She was right there, encouraging me and was the first to hug me and tell me how well I had done. Thanks, I needed that! J
Immediately following the test, I had an appointment with Dr. P. On rubbery legs I managed to make it ALL the way to his office……okay, okay, it was only 20 feet across the hall but it felt like 20 miles. When he entered the room, my first words were “are you happy you sadist.” He looked at me intently and said “you bet I’m happy. You’ve improved 20 percent.” I thought that perhaps my improvement was due to taking the test on the treadmill rather than the bike, and I said so. What I got in response was some serious eye-to-eye contact and a very clear statement: “the only reason you’ve improved is due to some mitochondrial repair.” I asked him if it was because of the Valtrex (anti-viral) and he said “yes.” “How about the amino acids?” I asked, referring to the IV drips of FreAmine I receive once a week. He said they probably helped also. Awesome! Now that deserved a fist pump!
He added that, of course, according to the test I was still clinically disabled, but that a 20 percent improvement was only the beginning. He told me to continue my regimen until my labs were all back. He added that he was very interested in seeing how my immune system was responding to my (supposedly) decrease in viral load (which I assume was responsible for the mitochondrial healing). He had spoke of immune modulation in the past as my test results had shown very low natural killer cell numbers and function, along with a high IL-6 and a very high IL-8 (inflammatory cytokine interleukin-8). Perhaps if my numbers have improved, his attitude towards immune modulation would change also.
He sealed the deal by saying that further improvement in function should be expected with continued aggressive therapies. Well, if I thought high-fiving Dr. P. was too cool, than what followed was way too cool…. He proceeded to add “icing to the cake” by walking over with arms outstretched to give me a big hug! A successful trip by plane, a 20 percent improvement with the probability of more high-fives, fist pumps and now a hug from Dr. P! Who could ask for more? Ok, a cure would be very much appreciated! J
My appointment was over but before I left the office I was hooked up to that pain-in-the rear 24-hour BP/HR monitor which I was required to wear for the rest of the day and overnight. Audrey and I went back to the hotel, using my wheelchair when necessary for my tired, weak legs. The BP monitor turned out to be not as bad as it was a year ago, as it only woke me up a few times during the night. Perhaps I’m getting used to it!
In case you haven’t read my previous blog, here is the protocol Dr. P. has had me on since about April 2010 and told me to continue Once a week normal saline IV drip (for my POTS/OT). Dr. P. would prefer twice a week but I have a home health nurse, compliments of Medicare, administer the one. Because I must pay for the supplies (tubing catheter needles), I can afford only one per week.
- Once a week FreAmine III 8.5 percent amino acid IV drip which is administered in my local doctor’s office.
- Twice a month Procrit injections (4,000 units) which I self-administer.
- One packet a day of the potent probiotic VSL#3. Dr. P. would prefer two per day, but I can only afford one.
- The anti-viral Valtrex (the generic is okay if not manufactured in India according to Dr. P.’s office). I take 500 mg. twice a day.
Dr. P. would prefer me to have a IV Gammaglobulin drip twice a month, but as I said, it is impossible to find a physician to do this other than him. It is unfortunate because after I receive the IVGg I feel great improvement for six to eight weeks.
1. Prior to my September 2010 appointment, because of an abnormal immunobilian panel, Dr. P. ordered a four week course of Xifaxan (a gut antibiotic) followed by a four week course of VSL#3, then he had me redo the test. My results continued to show some high amounts of the “bad” gut bacteria so I asked Dr. P. what the next step should be. He told me to continue taking the VSL#3 so that the “bad” gut bacteria wouldn’t get a chance to overrun the good gut bacteria. Since the initial treatment, I have had normal gut transit time for the first time in many years and continue to do so. And, I have thankfully gained five pounds since!
2. I asked Dr. P. why I was only prescribed 1,000 mg of Valtrex per day when many others I’ve read and heard about were taking three times as much. He said it was because I was only one-third of the size of everyone else. Ha! Ha! (I only weight about 114-pounds).
3. I asked him what he thought was causing my severe, computer-trigger migraine-type head pain and head pulse. He said it was most likely brain inflammation (for which I take daily Aleve).
4. When asked about my first XMRV test which returned as “none detected,” he said I was being re-tested using the newer antibody test (since then the “culture” part of the test has come back negative but the antibody test was “still pending.”
5. When asked what I could do about my increased anxiety associated with my “psycho-social stress,” Dr. P. said it would be okay to increase my dosage of Klonopin since I was taking such a small amount (.5 mg). I had been prescribed Klonopin years ago by a neurologist when I was suffering from episodes of tremors. I continued to take it at bedtime as it really improved my sleep. Dr. P. said that over time, many people have to raise their dosage anyway in order to maintain the same results.
6. When asked if I should continue my monitoring labs, he said “yes.” I currently have two standing orders. One every two weeks to monitor the Procrit (CBC, urinalysis and CMP) and one every two days after the amino acid drip to monitor for toxicity (CMP and phosphorus).
7. When I was last there in February 2010, Dr. P. had my blood levels of serotonin tested. I hadn’t realized this until he mailed me the results with an accompanying note stating “interestingly your serotonin levels are normal.” I wasn’t sure why this was “interesting” so I asked him. He said that it was because of my “psycho-social stress” that he had checked them (perhaps he wondered if I needed an antidepressant). “Corinne,” he said, “They’re not only normal, they are in the range of someone ‘bee-bopping’ down the street.” I smiled. Instantly I pictured myself with a bounce in my step, walking down the street, swinging my arms and maybe whistling a tune. Good visual. J He said he was amazed. I suppose that’s why I’ve never felt like I was clinically depressed. I mean I’ve had days, but they are usually fleeting. Overall, I do consider myself a happy person. Well, thank God for serotonin.
Today was easy. Returning to the office to have my 24 hour BP/HR monitor removed, I scheduled a 30-minute saline drip to help me manage the trip home the next day. After the drip, Audrey and I bought a delicious takeout stir-fry from a nearby restaurant and quickly found a place to sit and eat among the beautiful pine and fir trees. It was picture perfect weather with the added enjoyment of church bells ringing in the distance. This was our only chance for our version of a picnic and it was one of the highlights of our trip!
With tummies full, we returned to the hotel to rest up for the flight the next day. My legs were weak from the exercise stress test and as I would soon find out in the days that followed, would get very sore. Ah…..muscle soreness from exercise. It has been a long time since I experienced that. After my first stress test in June of 2009, my legs felt like cooked spaghetti but never became sore.
When I discussed this with Dr. P. , we decided that it was probably because my body was not producing energy in a normal, healthy way….it was not producing lactic acid as a by-product. Perhaps my mitochondria were too damaged. Perhaps this soreness was a good sign. Perhaps it was a sign of a healthier mitochondria, healthier energy production and a healthier me! I like to think of it that way, anyway. J
The trip home. Being early birds, Audrey and I were up at 4:30 a.m. and left the hotel at 8:00 a.m. for our noon flight, just in case of traffic. We arrived early, but what the heck. The flight home was quick, we actually made up ten minutes in flight and landed right on time! My husband picked us up at the curb and since it was about 110 degrees in the desert, the heat got to us a bit (POTS and heat do not mix well).
By now, we were both exhausted and it didn’t help that our car had a loose spark plug wire and began hesitating when climbing hills. While my husband pulled over to fix it, without the air conditioning, Aud and I melted. Oh well, I guess everything had just gone too darn smooth up until now. But all’s well that ends well. Although I didn’t get home until 5:30 p.m. (a very long day for me), I took the time to give some love to my two kitties and then promptly hit the sack with a big ol’ smile on my face. I did it! I did it! I made the trip back to see Dr. P.; I did it by air for the first time; I survived the stress test; and I had improved! Things were looking up for the first time in 20 years!! J
Update:
- Test results so far: NK cell function is still low and IL-8 is still very high.
- The results of my 24-hour BP monitor demonstrated “marked improvement” in my O.I. (orthostatic intolerance).
- The XMRV culture is negative but the antibody test is still pending,
Occasionally, I can drive close by (like to the lab) myself. Our car has a stick shift so for longer distances I require volunteer transportation. I was happily able to help out with our Christmas wreath business more than I had in years (in years prior I was in bed communicating with my husband by walkie-talkie as he frantically worked by himself in the garage).
As mentioned earlier, the improvements are most dramatic six to eight weeks after the IVGg drip and seem to taper off a bit after. Unfortunately, I must still nap and rest before lunch, and seldom stay up past 5:00 p.m. I still have headaches when I use the computer more than a few minutes or do activities which require standing for too long, but hey….why focus on the negative?
In fact, I’m in the process of getting ready to leave on a drive out to see our family in the next state for the first time in at least seven years. AND…. (keep your fingers crossed) I have already purchased my plane ticket, made my hotel reservations and booked my appointments to see Dr. P. in April while planning on making the flight alone, meeting my brother and his family who will be in Incline Village for their annual spring break ski trip!! Wish me luck!!
P.S. The trip to see family and one very special friend was awesome! The emotional support and love was much needed though physically I returned exhausted. HOWEVER, the recovery period was much shorter and less intense than in the past and the overall consensus was that I looked great….much better!!! J
Til next blog…..