(Corrine continues her blog recounting her visits to and charting her progress with, Dr. Peterson, one of our most experienced practitioners. As a bonus she includes her “Picking Dr. Peterson’s Brain” section where he answers her’s and others questions about CFS.)
Summary to Date
“Life can be likened to a grindstone. Whether it grinds you down or polishes you depends on what you are made of.” Author unknown
Let me start with a summary of my last visit, August 2011 (for a summary of previous visits, refer to the complete August blog):
I’d been doing well – feeling less sick and more functional. My previous visit was three months ago in May. I made this trip alone, flying in and hiring a local driver. I was surprised with a request to do the exercise stress test which I did even though I was there alone. I improved another ten percent (30 percent overall). Good news! I received my usual IV’s – FreAmine (amino acids), IgG (gamma), and daily saline. I was asked if I’d like to participate in the Columbia University Study beginning with my next visit. My question and answer session with Dr. P ended with a compliment that my attitude is instrumental in my improvement.
At home, I continued on a protocol of an amino acid IV and a saline IV once a week, a Procrit injection every other week, Valtrex (antiviral) 500 mg BID, and a daily packet of VSL#3 (probiotic). I was still unable to get the gamma IV’s at home, although Dr. P would like me to get them at least every two months. I continue my regimen of walking twice daily to and from the mailbox and have not been bedridden during this period or during the last year and a half, overall.
Visit #6
Day #1 (Sunday) “Back to Incline Village”
These three-month intervals are killing me! I was just there in August, but it’s time to head north to Incline Village again. Not that it isn’t beautiful in Lake Tahoe or that seeing Dr. P isn’t totally validating and fruitful, or that I don’t meet interesting patients and caregivers each time I’m there, or that participating in the Columbia University Study won’t help me feel very purposeful, or that the accomplishment when I return isn’t extremely rewarding…. but it’s still hard! Going it alone, fighting the fears associated with pushing myself physically beyond my envelope, the travel costs…. it’s tough. But I’m driven! This time I’m starting out not feeling as well as I have been. I probably should not be doing this alone, but what are my choices? Stay home and wait until I am feeling better…. or go and hope Dr. P has a plan to help me feel better? No brainer. I am going.
If you’ve been reading my blogs you know the routine: early Sunday morning shuttle to the airport two hours away, wheelchair assistance, a 1 hour and 45 minute flight, curb pick up by cousin Traci (with daughter Tjaden this time), a drive-thru lunch, and two gallons of drinking water from the mini mart for my room. Because I gain an hour as a result of the different time zone, I’m in “kicked back mode” by noon, hunkered down in my room in time to watch the Broncos stampede the Raiders.
It’s November and it’s cold outside, about freezing. In fact, one of my concerns about traveling this time of year is the weather. The previous week had been above normal temps, but I am prepared for the worst and have layers packed. There is a fresh few inches of snow on the ground and in the trees, but the sky is only partly cloudy and the sun is peeking through. The Weather Channel shows clear skies the rest of the week and because I’ve hired a local driver, I am not worried about driving in inclement weather. Setting my thermostat at a comfortable 68, I hit the sack early, feeling weak and drained, trying to psyche myself up for tomorrow’s 8:30 a.m. appointment.
Day #2 (Monday) – “Don’t worry” (be happy?)
I am picked up on time by my driver. This is the second trip in a row that I’ve hired him, so it’s almost like being here with a friend. We catch up on the past three months during the 20-minute drive to Dr. P’s office. I was told in August that Dr. P was moving into a brand new office in October, but as of yet, it hasn’t happened. So it’s back to the same old and now very familiar surroundings.
As usual, upon entering the exam room, Dr. P makes a quick inquiry as to my health while looking page-by-page through my chart and test results. He then writes up my lab requisition which includes a cytokine panel from the University of Miami, NK cells, IgG subclasses, EBV, HHV-6, Lyme panel, T&B gene rearrangement, HIV/HTLV (for the Columbia Study?), amino acid profile, thyroid panel, CMP, CBC, lipid panel, sed rate and I believe for the first time, VIP (vasoactive intestinal polypeptide)…more extensive testing than was done three months ago.
When I tell him I haven’t been feeling as well during the past one and a half months, he answers, “That happens, don’t worry about it.” When I remark that I had been feeling so good for the last year plus and that I didn’t want to revert back to the way I was previous to that improvement, he simply repeats, “Don’t worry about it.”?
My visit this time will involve my volunteer participation in Columbia University Study #1 (there will be three total – and participation in #2 and #3 will come in subsequent visits). As a participant, a quick neurological exam is required so Dr. P asks me to walk in a straight line towards him, one foot in front of the other… ha ha! I flunk.?
He then asks me to do that well-known subtraction test…. 100 minus 7…minus 7…minus 7…. all the way to zero. He tells me that time and correct answers are both relevant. I am not sure how I do, but I do know that my head hurts when I’m done. Gosh…why is this so hard? Dr. P remarks, “Bet that would have been easy for you at one time.” Yes, especially for a biology major who had her fill of math classes! Oh well, at least I still have a brain…sort of.
After my visit to the lab two blocks away, I’m dropped off at the office while my driver picks lunch up for me. While waiting for my Gamunex and saline infusions, I “inhale” the sandwich and the hot cup of delicious vegetable soup he brings back. Yum! It is during this time while chatting with other patients when I have an awesome experience that lifts me up out of my sick funk. One of the other patients suddenly asks, “Are you the one who writes on that website?” Oops, my cover is blown! After admitting I am indeed the one, another patient blurts out “I’ve got a copy of your blog in my purse!” (OMG!!) “We love your uplifting, positive attitude.” I blush with pride. Amazing! That just made my whole trip worth it!
By the time my infusions are done, I leave the office at 4:00 p.m. I’ve been here since 8:30! I am still not feeling very strong… shaky and weak with sore lymph nodes on my neck (never a good sign). At home, I usually take a mid-day nap but naps are not an option here. But tomorrow’s another day and it will involve further participation in the study, providing data that can help me and others with ME/CFS, and that is what helps propel me forward. It is also another beautiful day, sunny in the high 40’s so who am I to complain. Besides, I was made to feel like a sort of celebrity today and that’s enough to make anyone smile.
Day #3 (Tuesday) – “Brain Dead”
I am meeting with Gunnar from Simmaron Research at 9:00 a.m for the Columbia Study. I am asked to fill out a multi-page questionnaire. The questions are only multiple choice however, with a fatigued and spacey brain, it takes an effort to focus and so some of the questions require multiple readings to answer. One section involves onset, another asks about symptoms and yet others revolve around diagnoses and emotional/stress issues. The entire endeavor takes me one and a half hours and my head feels like it just went through it’s own version of the “exercise stress test.”
Ouch…. it actually hurts to think. I am mentally depleted and although I have a 10:00 a.m. appointment scheduled with the doctor, he is running over an hour behind. When asked, I gladly reschedule for tomorrow, and then donate a few vials of blood for the study, followed by my amino acid and saline infusions. While infusing, I munch on yet another delivered sandwich accompanied this time by a very hearty potato soup!
I leave the office at 3:00 p.m. For two days, I’ve been there almost as long as the staff has, which results in always smiling Joe at the front desk jokingly remarking, “You should clock in next time.” Yes, it has been another long day but the 500 ml of aminos mixed with dextrose and the 1,000 ml of saline provide me with enough of a blood volume boost and brain food to give me a temporary lift – enough to get back to the hotel to rest up for tomorrow.
Day #4 (Wednesday) “Picking Dr. Peterson’s Brain”
(ahhhh, questions…this is where the Queen of Questions is at her best )
Anyone who read my last blog knows I asked readers to submit questions they would like to ask Dr. P if they had the chance. Well, here you go… today’s your day! The drive to his office is gorgeous! The snow has mostly melted and the temperature promises to reach 50 degrees. My appointment is at 10:00 a.m. and after a brief discussion, I prepare Dr. P for the onslaught. I tell him about the questions you submitted and he responds by telling me he has read and likes my blog.? He then kindly agrees to answer them. Cool! I whip out my sheet of paper and start with a list of personal questions pertaining to my health:
MY QUESTIONS
Q: My immunobilan panel came back high again and you said you wanted to discuss it (it suggests intestinal dysbiosis).
A. Yes. I don’t know why it is high again but I would like you to do another round of the gut antibiotic Xifaxan and follow it up with higher doses of VSL#3 (the potent probiotic).
(I’m wondering if the increase in the bad gut bacteria might be why I haven’t felt as well, even though I do not have obvious intestinal complaints. I tolerated the treatment well when I first tried it over a year ago).
Q. For the first time, my NK cell lytic unit (function) reported as normal (all the way up to 19, as opposed to the usual 1. Significant? And if so, shouldn’t it translate to feeling better?
A. Yes, it is significant and it’s because of the gamma. It would translate to feeling better if we can keep it up there… and that is why it is so important to get you the gamma regularly at home.
Q. Last tests showed a positive ANA direct and positive Sjogren’s antibodies A and B. Does this signify a possible autoimmune component of my illness?
A. Yes, perhaps.
Q. You’ve tested me for RNase-L only once (at my first visit in 2009). Why haven’t you repeated it? Doesn’t it change or is the result insignificant?
A. Great question. I cannot find a lab that does it or I would definitely test you again.
Q. I’ve heard rumors that the CMX001 drug trial may not be happening. True?
A. The manufacturer (Chimerix) is telling patients what they are inferring to on their website, that they are focusing on CMV in transplant patients. I myself have sensed a change in their attitude over the last few months. But don’t give up hope just yet.
Q. Well then, if not CMX, what can I focus my hope on right now? (since it’s all about hope, right?)
A. (pause)…The studies…all the studies. Do you know how much more we are going to know a year from now?
YOUR QUESTIONS
(the submitter’s name is in parentheses)
Q. (omerbasket): I’d like to know what Dr. Peterson’s opinion is on whether ME/CFS is contagious.
A. I have never believed it to be contagious.
Q. ( LaurelW): I would like to know what Dr. Peterson thinks of the Norwegian Rituximab Study.
A. I believe there will be a subset of patients with an autoimmune component that might find it beneficial. However, I’d like first to see a multi-centered drug trial done by the manufacturer Roche. Also, realize that this drug can have very serious side affects.
Q. (Madietodd): Does Dr. P have patients with moderate CFS? If yes, does he find the same dysfunctions overall, but just less intensity?
A. Yes, like any other illness…all a varying degree of the same illness.
Q. (justy): Does Dr. P see long remissions and if so, what does he think is going on?
A. Prolonged remissions seem more likely to happen to those who have been sick a shorter period of time and probably have a more intact immune system.
Q. (Daffodil): I would love to know if Dr. P has seen any patients who seem to improve from the neck down but the brain stays completely foggy, and what does he think this is?
A. I believe it is probably two different symptom groups driven by different mechanisms that occur independently of each other.
Q. (justy): What are his views on the “methylation cycle block” hypothesis?
A. No opinion.
Q. (Cort): Dr Montoya’s talk mentioned refocusing on the innate immune system….Does he agree with that and what would that entail?
A. Yes, that agrees and supports my focus on NK cell function, a most primitive component of the immune system
When I tell Dr. P “that’s a wrap” he smiles and says “Well, that was easy.” Whew….glad HE thought so! ? I am exhausted and pleasantly surprised that I was able to focus so well. I pat myself on the back and thank him from the bottom of my heart for this opportunity, adding, “Thank you for all you do for me. It is much appreciated.” “You’re welcome” Dr. P says as he leaves.
It’s been another very long day. It’s 3:00 p.m. I call my driver and on the way home, we stop so he can take some updated photos of me by the lake. He then gives me a short tour of Truckee, the quaint little town close by my hotel. Finally, dropping me off at 4:30 p.m., we say a quick, “Until next time,” as I grab my belongings, questions with answers and notes firmly in hand. It’s another beautiful day and the snow is almost gone. To bed I go with one more long day ahead of me.
Day #5 (Thursday) “Home”
My flight is not until 1:10 p.m. I have a late breakfast so I don’t have to eat too close to boarding the plane. After hugs to all the wonderful hotel staff I have grown to know so well, Traci arrives just a tad late. I reach my gate just in time to board. The flight is smooth (the “less drowsy” Dramamine helps) and I land ten minutes early, meeting my husband at the curb for the two hour drive home. But since I lose an hour with the change in time zones, I don’t arrive home until 6:00 p.m. Unpacking will have to wait. My gas tank has been on or close to empty since Sunday, so straight to bed I go, hoping I haven’t pushed it too far, hoping the gamma will help with my recovery time and hoping I represented you and your questions well. If you like the results, let’s do it again! Feel welcome to submit more questions for my next visit to Dr. P in March and perhaps we can make this an ongoing event: Picking Dr. Peterson’s Brain… the Sequel!
CONCLUSION: “Recovery and Kudos to Caregivers”
Recovery From the Trip:
I was prepared for the worst but it’s been four weeks and it hasn’t happened yet so I repeat Dr. P’s mantra “don’t worry about it.” I had pushed myself even when I was already feeling bad and that’s usually a recipe for disaster. So is it because of the gamma? Probably. The Xifaxan, which I’ve been on for three weeks? Perhaps. The fact that I am now receiving two, one liter infusions of saline per week instead of one, must help also.
I’m in the midst of helping with my husband’s seasonal business and so far, so good. I’ve had one night of bad head pain which I attributed to using the computer, but along with it came drenching night sweats, something I hadn’t experienced since I started feeling better about one and a half years ago. That alarmed me a bit but in a way it felt “cleansing” or “detoxifying.” Perhaps it was the result of the Xifaxan and the gut bacteria “die off.” But I’m just guessing. I don’t really know. I’ve felt pretty good (which to me translates as “non-fluish”) since.
I’m well known for experiencing delayed crashes, but I’m hoping that four weeks is a long enough wait to have experienced any negative effects. As for now, I can say that I am feeling better than before I left for the trip. Unfortunately, we have been unable to acquire the gamma for me at home but we are still working on it. My next appointment with Dr. P is scheduled for March 2012 but I may move it up if I cannot get the gamma soon.
Kudos to Caregivers
Before I close, I would like to bring attention to the handful of men I have become accustomed to seeing at each visit who are dedicated to their wives and significant others and who I have grown to admire from a distance. I’m not ignoring the many women who are also there supporting their spouses, but it is well documented that more women suffer from ME/CFS than men and that men, in general (please know that I am well aware that there are many exceptions), have more difficulty accepting the care giving role. I guess they stand out or are at least, seem more noticeable to me.
I particularly focused on one couple whom I had seen on every visit since my first one in June of 2009. I took the liberty of speaking to the husband while his wife was receiving an infusion. This, and the last trip in particular, he seemed most cheerful, always smiling as he assisted his wife who has been ill for over 25 years. He told me that she has been on a new treatment regimen and was doing much better. I proceeded to compliment him on his dedication and attitude.
He thanked me but was quick to add, “It hasn’t been easy though.” I told him I knew that and that was exactly the reason why I was complimenting him. He told me that unbeknownst to his wife, he had made a pact with God. He had promised that every time he felt frustrated he would “take out the trash.” He smiled and said, “Believe me, there were many days when I was taking out the trash many, many times!” We laughed. He added, “It worked, though.” I asked if he ever considered bailing out. He answered, “No, that was not an option.” I smiled and was moved. I was touched that he would share this personal story with me.
I felt nothing but admiration for him and the other husbands I overheard him speaking with later. They spoke about their wive’s health, treatments and Dr. P as many men might discuss sports, work and beer. It was refreshing and I want to send out my “kudos” to them (you probably know who you are!) and all the ME/CFS caregivers, male and female, who have endured all the pain and frustrations, including doubting friends, family and physicians, but have still hung in there through it all.
Test Results
Unfortunately four of the tests this round were not covered by my insurance and were a bit expensive, however my understanding is that they were needed to determine my eligibility in the upcoming Columbia University Studies #2 and #3. Here are my results:
- …NK Cell function is 7 lytic units, just below the normal of 8, but less than the promising 19 last reported. However, it remains higher than my usual reading of 1. Continuing subnormal are my NK spec.cell % lysis, Total T cell absolute count and NK cell absolute count.
- …Amino acid profile continues to show abnormalities with a repeated low homocystine of zero in the urine analysis and low threonine levels in the plasma analysis.
- …I continue to show evidence of EBV reactivation, with elevated EBV EA-IgG, VCA-IgG and NA-IgG. HHV-6 IgG antibodies report as elevated @ 12.47 (positive is anything above 0.99).
- …A test new to me was the VIP, plasma (vasoactive intestinal polypeptide). My results were in the normal range, however Dr. P’s accompanying note states that it “is very low @ less than 16.8.”
- …The Lyme IgG/IgM panel reports negative as does the HIV/HTLV-I & II.
- …I have not received the results of my cytokine panel as of this update.
Dr. P’s note states that I do meet the criteria for the studies, which I assume is because of the exhibited evidence of pathogens.
Protocol
After completion of the four weeks of Xifaxan followed by four weeks of 2 pkts/day of VSL#3, I continue on the same regimen mentioned at the beginning of this blog. However, because of the discontinued production of FreAmine III 8.5% by the manufacturer, Dr. P is in the process of coming up with an appropriate substitute. Meanwhile, I have only two weeks of FreAmine available and I am a bit worried about whether I will have to miss any amino acid infusions before a sub is found…and if my insurance will cover the replacement. Because I have found success with the weekly FreAmine, I am obviously concerned about the change. I have continued to feel better than I did before the trip.
***BREAKING NEWS***
“The gamma is coming, the gamma is coming!” Persistence finally pays off. It’s taken a lot of time and back and forth discussion, but Dr. P has been encouraged to order a sub Q gamma for me called Hizentra. It is administered with something similar to an insulin pump – subcutaneously over a period of 1½-2 hours. No refrigeration or electricity needed. The pump is worn in a fanny pack and one can go about their business as usual, unlike IvgG. I believe I am one if the first patients of his to try it. And the best part is…it will be covered by Medicare!
A nurse is coming in a couple of days to show me how to use it…then it will be shipped to my house weekly for me to administer myself.
I will let you know if we find it successful or not in my next blog. Wish me luck!!
Also wish me safe weather, safe travels and more answered questions in March, my next visit! Until then, FEEL GOOD!
Special Thanks
A special thanks to my great friend of 35 years, Sandie, who spares me much head pain by typing my blogs for me! Thank you Sandie!
And of course there is Cort, who by encouraging me to do this has added much purpose to my life (and who, by the way, is considering Driving Miss Daisy again in March!!). Thank you Cort! ?
“Act as if what you do makes a difference. It does.” William James