Never be afraid to laugh at yourself. After all, you could be missing out on the joke of the century
~Dame Edna Everage
It’s March and time to return to the land of the clear blue lake and the doctor with the clear blue eyes…Incline Village, Nevada and Dr. P! J But first, allowme to recap the months following my previous visit last November.
I was not feeling as well during October and November as I had the past year. After Dr. P advised me to “not worry about it…that happens,” he sent me home with a prescription for the gut antibiotic, Xifaxan and with the hope that he would figure out a way to get me immunoglobin (Ig) at home in some way, shape or form.
After starting the Xifaxan, I immediately began to improve, following up with the probiotic VSL#3, leading to a very good three months. I was not only able to help my husband with our seasonal wreath business, but I also felt well enough to visit family out of state (and enjoy it!), returning home with the vim and vigor that allowed me to go out to lunch the week after….and the week after, feeling better than ever!
Coincidentally, between those two lunches, I received my first dose of a subcutaneous Ig (SCIg), Hizentra. This was something relatively new (about three years) and since it is easily self-infused, it was the only way at this time that we could manage to get me the gamma at home. Five days later, I “crashed” – suddenly and without warning, one day feeling better than ever and the next, feeling worse than I had in two years.
Not knowing whether it was the activity or the SCIg, I continued the once a week infusions for a total of four weeks. But as my trip to Dr. P was getting closer and I wasn’t feeling any better, I took it upon myself to cease infusing two weeks prior to my departure date. I had to do something to help me feel better or I was going to have to cancel and I didn’t know what else to do.
My symptoms did not coincide with the side effects listed in the drug’s pamphlet and seemed “simply” a major exacerbation of my illness…but brought on by what? Tender cervical nodes were in full force, muscle twitches and weakness were horribly activity altering, the feeling of having my finger in an electric socket raged and my head hurt so much I could not think or read. And though as a result of being homebound, I am normally pale, I was paler than usual.
The healthier color Dr. P’s regimen had given me, was gone. This was the lack of color I had seen before, when I was bedridden. My gut also was not right, with intermittent waves of nausea. Even those dastardly finger tremors were back! Yikes! How could I take a plane trip in this condition?
The “crash” could easily have been the result of the activity, but I had been this active within the past two years without showing these results. Needing a plan (I always need a plan) and not being able to erase the past month’s activity, I decided to halt the drug. Everything else had remained the same: an amino acid IV every week, saline IVs twice a week, Valtrex twice daily, a Procrit injection every other week, along with the VSL #3.
Over the next two weeks, many of my symptoms lessened and a few subsided, notably the nausea, but I still wasn’t anywhere near where I had been a month earlier. However, I had appointments to keep and not just any appointments, but an appointment with Dr. P, whom I felt could help me figure out what happened, an appointment with the CFI (Chronic Fatigue Initiative) Study (as a participant) and an appointment with my good friend and driver/assistant for the week, Cort! Cort was making quite an effort to be there and knowing I’d have his help was key in my decision to go.
So, here is my story of Visit #7 (driving a very wilted Ms. Daisy
- Dig Deeper: Dr. Peterson Talks! Check out an interview an Dr. Peterson done during this trip
- Dig Deeper: Learn more about Dr. Peterson
- Dig Deeper: Check out more of Corinne’s blogs
Day #1 (Sunday) “The Arrival”
The 4:30 a.m. wake up alarm; the 6:25 a.m. shuttle; a very crowded airport jam packed with spring breakers; wheelchair assistance; three-quarters of a less drowsy motion sickness pill; a smooth and timely one and three-quarter hour flight; more wheelchair assistance; curb pick up by Traci (my cousin who lives in Reno); a quick lunch; two gallons of drinking water for my room; and final destination (the hotel) reached at 1:30 p.m…. the usual.
A quick peek at the Weather Channel shows what I had feared – a possible overnight snowstorm. Having watched the Tahoe weather all winter and realizing they had, thus far, been seriously deprived of precipitation, I had hoped the mild climate would continue as the theme for just this one week. But of course not! What could I have been thinking? Depleted and exhausted, I don my flannel PJ’s, curl up under the covers and close my eyes, hoping that Cort had taken my advice to “bring tire chains, just in case.
Day #2 (Monday) (Part I) “The Weather”
I awake to only a dusting of snow, but it is still coming down. It’s not sticking on the asphalt so that’s a good sign, for now. I meet Cort at breakfast and while we eat, we discuss the week’s plans. Occasionally glancing out the windows, we see the flakes continuing to fall and getting larger. The bad news is, the roads are now white. I inquire of the hotel staff on how the roads are to Incline Village (a 15 mile drive). “The roads should be fine,” they tell me. That’s good news as I have just found out that my desert-dwelling driver didn’t bring any chains.
My appointment with Dr. P is at 8:00 a.m. and we hit the road with what seems to be plenty of time (not!). After a few miles and lots of sliding, we slow to a crawl. The locals are zooming past us, evidently showing off their nifty snow tires, which causes us to chuckle and remark that we feel like tourists. Eventually, we no longer have any traction, and wouldn’t you know that in the land of skiers galore, there is not a single snowplow in sight! How can that be?
Cort slides us to the side of the road and puts on the hazard lights. While eyeing the opened bag of trail mix seated between us, I jokingly suggest that if we get stranded at least we’ll have something to eat. “We’ll?”, he says, “The trail mix is mine.” I quickly counter, “Wait a minute, I’m the one who gave it to you!”…and then the fun begins…Smiling, he quips, ”But we both know you’re a goner anyway without your Ivs, so why waste it?” Too funny. I’m laughing so hard I’m speechless :).
Then trooper that Cort is, he exits the truck, instantly slipping on the ice and almost breaking his neck. Once he regains his balance, he walks towards an auto parts store for help (leaving me with the trail mix, BTW J ).
I stay seated in the truck, half on and half off the road – I’m just guessing as the lines on the highway have long ago become indistinguishable, covered by the snow. As the cars race by, close enough to touch, the thought crosses my mind that I am going to get rear-ended and die right here. However, a quick glance out the window helps me realize that I would not be any safer getting out. It’s cold and there is nowhere to stand that will shelter me from the falling snow, but most important, there is nowhere to sit!
Though the cold temps are keeping my blood pressure up, with orthostatic intolerance (OI), standing and waiting is not an option. I take my chances and stay put. Momentarily, the snow starts to stick to the windshield and now I can no longer see out. With the sounds of the cars racing by, this is quite unnerving. I wiggle out of my seat, brave the elements and scrape my side of the windshield with my credit card – and then jump back in!
By now it is inevitable that I am going to be late so I call the office to fill them in. It is not long before Cort returns with tire cables and someone to help install them. In moments, after a couple of failed attempts, we find enough traction to return to the road, still crawling but at least moving forward instead of sideways or backwards. Ironically, after just several yards, we reach a newly plowed section of the road, clear and clean. Ha! We just look at each other and laugh.
In a few minutes we reach the parking lot of Dr. P’s new office. Late and anxious to check out his new digs, I jump out of the truck and sprint towards the entrance, excitedly thanking Cort for getting us there in one piece. J
Day #2 (Monday) (Part II) “The Doctor and the Studies”
After signing in and getting acquainted with the brand spanking new and unfamiliar surroundings, I’m called in to see the doctor. I greet “Nurse J”, a familiar face here at Sierra Internal Medicine. After weighing me on the new fangled do-it-all scale, I’m glad to see that I’ve been able to maintain my weight through this down time, rather than lose. As I step off, “Nurse J” comments that so far, I have the lowest BMI (body mass index) yet recorded on the new machine. Hmmm….I’m not sure if that’s a good thing, so I ask. Smiling, she says “Sure. If it’s not too low, it’s just one less thing to worry about, right?” Ok, glass half full. Sounds good to me. J
The smell of the new carpeting in the waiting room was a bit much for my already spaced-out brain, but the exam room is carpet-free so the odor subsides. After a short wait, Dr. P enters and with a quick greeting, heads straight for the counter to look through my chart. Because the counter is situated to my right, I can now make some eye contact rather than just sitting there staring at the back of his head, as in the old office. I like this view better.
I quickly tell him about my setback and he assures me he will help me figure it out. To be honest, I am not sure what I’d rather have the reason be. If it was because of the SCIg, well there goes my chance, for the time being, of receiving the gamma at home and the benefits it could provide (immune modulation). Not to mention that through Medicare and financial assistance from the immunoglobin supplier, it was cost free! And yet, if it is the SCIg, I then have a “black and white” answer as to why I “crashed”.
But if it’s because I did too much…well, what does that exactly mean? It’s not only unclear but it is also a bit depressing. I had found a new tolerance level with my improvement these last two years, so would this mean my tolerance level had changed? Would I have to re-establish my boundaries, not knowing how much I would have to pay for how much? Not fun. The experience of feeling better and then having that taken away is almost worse than not having improved at all. It’s like getting just a taste of something indescribably delicious and then having it snatched right out of your hands. L Oh well, whatever it is, I am sure Dr. P will have a plan.
The Pathogen Study – His next question is in regards to my participation in the CFI Study (aka, Columbia #2, aka the Lipkin Pathogen Study). Dr. P is vehement about my inclusion and assures me that he will take care of any problems that may arise in getting me a “healthy control”. It seems the “control” must now be the same gender, within five years of age, living within 100 miles, but having never co-habitated and, of course, not related. Wow, whom does that leave?
Being from out-of-state makes this quite difficult. Dr. P asks why I didn’t bring someone with me….”someone from your quilting club” he jokes. I explain that I don’t attend a quilting club, or any club for that matter, and cannot afford to pay someone’s way. He tells me to go off to the lab and by the time I return and meet with Gunnar, he will have figured it out.
So, off he goes…and off I go. But not before I am fitted with the 24-hour blood pressure monitor he wants me to wear. Yuck! This simple, non-evasive test is one of the biggest pains in the you-know-what, assuring me of a sleepless night as the cuff inflates every 15 minutes during the day, as well as every hour, overnight. I didn’t sleep well last night and now I can look forward to a similar experience tonight. Nobody said this would be easy.
In this new office, the trip to the lab is only yards away, whereas in the past, it required being driven a few blocks. My requisition reads as usual: CBC, CMP, Thyroid Panel, IgG subclasses, IgG, IgA, IgM, amino acid profile, T&B gene rearrangement; EBV, ANA and ENA, and NK Cytotoxicity, with a repeat of the vasoactive intestinal polypeptide (VIP) and the Immunobilan Panel (which shows antibodies to bad gut bacteria). He also adds a new one: an anti-IgA antibody test, which I assume might help determine if the SCIg was the culprit in my “crash.” Fifteen vials of blood are drawn, along with one UA.
Exhausted from all the extra steps it takes to navigate unfamiliar hallways–a wrong turn here and a wrong turn there results in a lot of retracing of steps–I silently wish they had put up arrows so I could have gotten it right the first time. Now, where’s that elevator again? J When I finally find it, I take it upstairs to meet with Gunnar and get my IVs.
In the new, spacious IV room I reacquaint myself with the nurses and promptly get hooked up to my aminos. This formula is a new one, as the old standby, FreAmine is no longer being manufactured. This one, Aminosyn, is administered slowly to test my tolerance. I do fine so the rate is increased. The infusion is completed within one and a half hours. A liter of saline follows and as it drips in, I meet with Gunnar to answer some preliminary study questions.
With Gunnar’s approval, I invite Cort to join us as my screening will be followed by an introduction and explanation of this study and the other three that are already in stride, or will soon be. This conversation is quite informative. As expected, I learn quickly that I qualify for the CFI study and that Dr. P is so determined I participate, that finding me a “control” has already been worked out. J This study will be testing for new and novel pathogens in various body fluids (tears, saliva, urine and rectal swab), including blood. I imagine Dr. P considers me a good candidate since past testing has shown evidence of reactivated herpes viruses.
Gunnar informs me that I am also eligible for the next study, aka Columbia #3. This study will perform tests on cerebrospinal fluid (CSF), of which they already have a sample frozen from my 2009 lumbar puncture. All I will need to do to participate is sign an informed consent. Supposedly, coinciding CSF samples will be sent to the Bond University in Australia for a pilot study funded by Simmaron Research, which will investigate cytokines, autoimmunity and NK cells. Following those will be a study with the CDC, which Gunnar says I will most likely be asked to participate in as well.
Meanwhile, for this study I will be required to complete two lengthy questionnaires, similar to the ones I did for Columbia #1, only this time they will have to be done on the computer, not with pencil and paper. As I have blogged in the past, I cannot use the computer without triggering severe head pain and dizziness, which can last for days. How will I manage almost three hours of questionnaires? As I’m moaning and groaning, I hear Cort calmly interject – “No problem, I’ll help her.” He then explains that he’ll read me the questions off his laptop, one by one, and register my answers for me. Awesome! Problem solved! Knowing my answers and test results will be contributing to future ME/CFS funding, research and treatments is one of the main reasons I push myself to come here. This sense of purpose is very satisfying to someone who does not want to look back at 21 years of illness as meaningless.
I leave Cort and Gunnar to further chat while I rejoin the IV room to finish up my saline infusion. I am glad that I will be contributing to the cause but one thing especially resounds in my head as I close my eyes and rest in the recliner. While discussing the studies, Gunnar uttered these words in complete sincerity with a bit of sarcasm attached: “A year from now it is obvious we won’t be calling this illness Chronic Fatigue Syndrome.” I smile and say to myself “what a nice thought.”
Day #2 (Monday) (Part III) “Recognition”
After wandering the new premises and taking a lot of photos, Cort parks himself in a recliner next to me. We are equally exhausted, but enthusiastic nonetheless. Within minutes, a patient enters and walking straight towards us, nonchalantly smiles and says “Hi Cort, Hi Corinne.” I look at Cort questioningly, thinking, “Am I losing my mind? Do I know this person?” “You look just like your picture on your blog” Anita says.
There is no doubt this happens to Cort often, but to me it’s a surreal experience. This is the second time in the last two visits that I am recognized because of my infamous “visits with Dr. Peterson.” Anita then introduces us to other IV patients and they too know who I am. I’m stunned. To think I was bedridden two years ago, completely withdrawn from society – but now, here in Dr. P’s office, I am recognized and kindly complimented by whom I soon learn to be, amazing individuals.
The encounter is most enjoyable but as you all know, talking is expensive, energy-wise. After exchanging contact information, Cort and I leave. The sky is now partly sunny so the roads are clear. I am back in my room by 3:00, too tired to do anything but call it a day – hoping the troublesome BP monitor will not interrupt a much needed night’s sleep.
Day #3 (Tuesday) “Questions and Answers”
Today I don’t meet with Dr. P until 10:00 a.m. Sleep last night was unrefreshing as a result of the repeated jarring of the monitor…I’m not a fan! Occasional glances at the display show a 95/58 and an 89/55 so perhaps it is a good thing that I am recording these.
Cort and I tackle some of the first questionnaire after breakfast. This one is 39 pages long and we get through a third of it before it’s time to leave. The weather is cloudy and the roads are wet. Some light rain and sleet fell earlier but it is not going to threaten our drive. I am drained, depleted enough so that Cort even remarks at the slight slump in my shoulders. It’s not like me to be down, but I am exhausted and this is the best I can do.
We arrive early enough to meet with Gunnar first and to donate my specimens to the study. He wants to be sure it is done before I receive any Ig so this is as good a time as any. He runs me through the procedure and then begins, all the while Cort, with camera in hand, records every step with a snapshot.
Collecting tears requires keeping my eyes closed while a cotton swab with a little hook is attached to my lower eyelid, one eye at a time. Each one only takes a couple of minutes, during which Cort continues clicking away.
Saliva is collected by chewing on a lump of gauze for another minute or two before it is placed in a sealed container…more photos.
The rectal swab, on the other hand, is self-collected, much to Cort’s dismay. So off to the restroom I go (minus the cameraman) and well, as my friend Carrie would say…”Bottom’s up!!” J
All this is followed by the drawing of at least 6 vials of blood.
I then head downstairs to meet with Dr. P, my sheet of questions in hand. Some of my test results have returned so his first remarks center around my once again, above normal Sjogren’s antibodies. He says they are the same as last time, not higher, which is good but I gather that I may be developing an autoimmune component to this illness. I say “developing” because my next question to him concerns the presence of AI that he sees with ME/CFS.
I ask him if it’s something he feels develops along the way or if it is there from the start. He believes it develops over time and I believe test results agree with that. For example, I’ve never exhibited a positive ANA before last year. I suppose my fear has always been that one cannot be this sick for this long (21 years) with an immune system that is dysfunctional in so many ways, and not have it result in more dysfunction. Regardless of how society views me, I have a serious illness. I feel if I don’t “nip it in the bud” soon (modulate it), who knows what could result. He follows this up by informing me to be on the lookout for a multi-centered trial for a Rituximab-like drug happening soon.
Dr. P then grabs my list of questions. Giving me his full attention he answers them one by one, allowing me to interject and further interpret:
Q#1: If I were on Ampligen, would it be necessary to continue all the other treatments I’m currently doing (a full time job, by the way)?
Q#1: Not the Procrit? Saline? Aminos? Nothing?
A. Nope (smiling).
Q#2: Why, again, do you consider me an ideal candidate for Ampligen?
A. As I told you before, your high RNaseL.
( I feel it’s important at this point to insert some information on the RNaseL testing. At my previous visit, Dr. P had said that he hadn’t re-tested me since the first time in 2009 because he couldn’t find a lab that was doing it. Since then, I have found that UNEVX is still doing the RNaseL Activity Assay but not the Protein Quantitation, both of which I had done over two years ago. So, as not to get anyone confused, I would like to explain.
On my original test sheet done by Redlabs USA, below my normal RNaseL Activity Assay result, it states:
“The Activity Assay measures the amount of enzymatic activity…this activity is normally induced by interferon in response to a viral attack…increased RNaseL enzymatic activity may be ‘normal’ (as in the case of overt infection and produced by the activated 80K Da form) or may be abnormal (as in the case where the 80K Da form has been cleaved into LMW fragments).
The latter example is what is routinely observed in immune cells from patients with CFS (increased activity may or may not correspond to an increasing dysfunctional immune system. The RNaseL Activity Assay should be done in conjunction with the RNaseL Protein Assay to determine the level of enzymatic activity as a function of RNaseL fragmentation.” (emphasis mine)
And then this is stated below my high RNaseL Protein Quantitation result (the test they no longer do):
“The RNaseL Protein Assay measures the amount of low molecular weight (LMW) RNaseL protein relative to native HMW protein…the LMW form which lacks regulatory function is responsible for abnormal cleavage of cellular RNA. In addition, some LMW fragments can also bind to and disrupt normal cellular flow. The increased presence of LMW forms indicate a progressively disrupted and dysfunctional immune system. The ratio of LMW forms to 80K Da native RNaseL can be useful to classify the disease state and monitor the progression of the disease and therapy.” (emphasis mine).
So, basically, the Activity Assay alone may not be enough to determine immune dysfunction and yet, that is the only test now available. It is obvious that Dr. P believes the Protein Assay is the more important of the two. The information I received says that the latter is probably not available because it is more difficult to do. I am not sure if “more difficult” translates to more expensive? Less cost effective? More prone to error? Whatever the reason, it seems unfortunate that it isn’t available at this time.
Q#3: Knowing my intolerance to exercise and reading about the dysfunctions that are more visible “under load,” why don’t you have my labs drawn after the stress test, as well as before? Wouldn’t that tell you more?
A. There are more studies doing that now, but the difficulty is in the timing. Labs drawn “under load” have to be timed just right and that makes it a little bit more complicated. It also involves a catheter insertion for the duration which makes it more difficult.
Q#4: Although I am “on hold” with the SCIg, will I be getting IVIg (Gamunex) while I am here?
A. Yes, definitely.
Q#5: My VIP (vasoactive intestinal polypeptide) came back in the normal range yet, your accompanying letter stated “it was very low @ 16.8.” What does that mean?
A. This is something new I’ve been testing for…and yes, I consider yours low. VIP is something you can actually take so it’s an easy fix if appropriate. Stay tuned on this one.
Q#6: Someone commented to me that they were doing very well on a maintenance dose of Xifaxan. Is there such a thing?
A. No. I would think the possibility of antibiotic resistant bacteria could have catastrophic results
Q#7: When I’m having a down time like I am having now, can I receive a second amino acid IV per week instead of just one?
I managed to squeeze in just three questions that you, the readers, submitted. I chose the ones I could rephrase as particular to my health. The rest I will save for another visit. J
Q#8: (submitted by searcher): Is low NK cell function found in other diseases? If so, are they as low as ours?
A. Yes, they are found low in other diseases but not as low as in this illness.
Q#9: (submitted by Anniekim): You have said that the computer can trigger cytokine storms and that may be why I feel worse when I use it. Can you explain?
A. Cytokine storms are a flood of cytokines and are actually quite common in the brain. These storms, however, can alter the production of ATP by interfering with ADP recycling.
Q#10: (submitted by Tristen): Is there anything I can do to protect my gut bacteria balance? Does the Ig help? Do NSAIDS hurt? If so, what is the best anti-inflammatory to take?
A. Yes, the Ig helps as does the VSL#3 (probiotic). And yes, NSAIDS hurt. As to the best one to take? Let me research that a bit more and I’ll get back to you.
Questions complete, Dr. P takes my sheet to make a copy for my file, which he says he will refer to when dictating the letters he sends with my test results. While waving them around, he looks me in the eye, smiles and says, “You always ask the right questions.” Ha! My first reaction is to respond with a humongous “DUH.”–I’ve not been labeled the Queen of Questions for nothing!–but then I remember, this is Dr. P after all, so I refrain. Wheew…..
I am quick to remark however, that this is a far better comment than the one he “botched up” yesterday when he had suggested that he knew someone who lived in my area, was in town for the winter and could perhaps be used as my CFI Study healthy control. “How old are you?” he had asked. After I told him, he blushed a bit and said “Well, I guess that won’t work. This person is about 75.” Having needed someone about 20 years younger, I shook my head and said “Thanks a lot Doc!”. He laughs and mumbles some excuse as to why he had unintentionally insulted me yesterday. “Oh well” I tell him, “You made up for it today.”
Totally wasted and weaving down the hallway to the elevator (I tend to weave when I’m tired), I ride up to the second floor and check in for my IVIg infusion, with saline to follow. I try to relax and rest but it’s nearly impossible to avoid conversing when you meet such interesting patients, all with their own, but eerily similar stories. The connections and the like-mindedness is very bonding, but in some ways, it’s sort of pitiful to think my social life revolves around a doctor’s office….here, in beautiful Lake Tahoe, as well as at home, which happens to be in a place that is equally beautiful and also very much geared toward outdoor activities. Such is life.
Cort is kind enough to bring me some lunch while I infuse and for the next nearly two hours, I chat and rest and chat and rest. Finally done for the day (both literally and figuratively), I’m back at the hotel by 3:30 p.m., hoping desperately to be able to rest up so that I may appear coherent at tomorrow’s meeting with Cort and Dr. P.
Day #4 (Wednesday “Shower and Clean Hair Day”
Today we meet with Dr. P, so this morning I feel the need to shower and wash my hair. I’ve never felt comfortable writing about this but now that I have recently confirmed that there are many other ME/CFS patients who do the same, I confess: I shower and wash my hair only about every four to five days…sometimes even longer. Even though I sit while showering, I find that it takes more energy than it’s worth. And besides, it’s not like I’m sweating through a workout every day. I find washcloths and half-showers work fine in between and allow me to save my precious energy for other things (I used to love long, hot baths, but because of OI those are a thing of the past). But today is special as along with Cort, I’m representing Phoenix Rising, so a seated full shower it is (thank goodness for a room with a detachable shower head!)
Because we don’t need to meet with the doctor until 12:30, Cort and I spend the morning completing Questionnaire #1, with my feet seriously elevated to get some blood to a drained brain. Outside it has been snowing, so there’s about three to four inches of the white stuff on the ground. Definitely a “chains required” day. Cort pulls himself together and braves the elements to install the newly purchased cables. We leave early, just in case.
The drive is slow and the “chains required” signs are flashing. The cables do their job and we arrive with time to spare. We have time to take some photos of the gorgeous lake with snow now covering the beaches where sand would normally be. It’s spring in the mountains and hopefully if the sun just peeks through, the snow will be a distant memory after a quick meltdown.
Talking with Dr. P is as informative and interesting as always and we are most grateful for his willingness to participate. While Cort is busy jotting down notes (Dr. P is not a fan of recorders), I’m trying my best to stay focused enough to sound half-way intelligent when I open my mouth. Not sure if I succeed.
After more than an hour, Dr. P has to return to his doctoring so it’s time to leave. Looking out the window, the sun is out and the sky is now blue, resulting in a breathtaking reflection upon the crystal clear lake which is now surrounded by snow covered peaks. What a sight! Before my “crash” my goal had been to attempt to cross off one of my bucket list “to do’s” – a horse drawn sleigh ride. In the condition I was now in, this was not feasible, but oh what a perfect day it would have been for that adventure. The ride was to include the crossing of a meadow, a meandering through the woods and ending at an overlook of Lake Tahoe. I close my eyes and picture it…feeling the cold wind on my face, hearing the gentle sound of the sleigh over the snow, the jingle of the bells on the horses, smelling the steaming hot chocolate (which I can’t drink anyway J), and finally, picturing the jaw dropping view from up high. And then I whisper to myself…”Next time.”
DAY #5 (Thursday) “Hydration”
I finally get a much needed, decent night’s sleep, but it’s still an effort to get out of bed. Being that it has been such a taxing week, I thought I would put that amino acid IV twice-per-week theory into practice since my first one was way back on Monday. And with the plane trip tomorrow, why not follow it up with a liter of saline. Having been told yesterday that they were out of saline, I am pleasantly surprised to have a message on my phone that says there is an appointment open at 8:45 and the saline is available. Good! I desperately feel the need to hydrate.
The sky is partly cloudy and the drive is a breeze. I am told by Dr. P’s office manager that if more test results come in, the doctor would like to see me before I leave. Unfortunately, that doesn’t happen, so the additional questions that have popped up in my mind the last couple of days will have to wait. I start the infusions and am unusually quiet, but by the time they are done, I’m chatting up a storm. It’s amazing the little burst of energy and mental clarity these IVs can give, albeit temporary. Cort remarks that he, too, notices the difference (he probably liked it better when my mouth stayed shut).
Back at the hotel, after a nap, we meet in the lobby to finish off Questionnaire #2 with what little energy I have left. This one is 12 pages long and some of the questions are a bit confusing. After a quick call to Gunnar, things are clarified and we breeze through to the end. My brain is fried, and it wouldn’t surprise me if Cort’s is also. It’s amazing that we still have enough cognitive ability to sit for a while and discuss all we’ve learned (and didn’t learn) at this visit.
Cort has an early morning start planned with perhaps a stop to check out the WPI on the way. I’ve got a plane flight at 11:15 so I will have a chance to sleep in, sorry that I don’t have the strength and energy to visit the WPI with him. So we part company while I slobber multiple “thank you’s.” His presence this trip was priceless. Without him, I could not have done the questionnaires and so could not have participated in the CFI Study, not to mention how nice it is to be able to laugh and share company with someone who “gets it.” Hopefully, we can do it again, without the tire chains. J
DAY #6 (Friday) “Home”
This is the first time I stay until Friday. Knowing there was a lot on the agenda, plus factoring in the weather, I had hoped the extra day might prevent me from having to miss something. I am totally depleted and counting the hours until I will be safely home, tucked into bed, having accomplished another memorable visit.
I weave down the hallway to breakfast then wait for Traci to pick me up. When she arrives, I summon up the strength to stand and walk to her vehicle while Rick, the hotel manager, and now familiar enough to call a friend, loads my carry-on bag. We hug goodbye.
I am dropped off at the Reno airport in plenty of time. I down my less-drowsy motion sickness pill to ensure against any further nausea, as I am already a touch queasy from the brain and body drain. Using the wheelchair to get to the gate, the plane takes off a bit late but the pilot makes it up in flight and we land on time, husband Joe, thankfully waiting at the curb to pick me up. I’m home by 3:30 and after unpacking a few vitals, I dive into bed, grateful that I made it!
“Recovery, Decisions and Test Results”
Executing this visit and the recovery from it, was far more difficult than the others. Considering that I began the trip in already pretty bad shape makes that no surprise.
When I returned home, I was exhausted. However, my usual delayed onset PEM hit me the hardest two weeks post-trip. I spent that week feeling pretty fluish and even close to bedridden a couple of days. But I continued my IVs (saline and aminos), forcing myself into my local doctor’s office, praying that they would help with recovery, all the while debating whether I should resume the SCIg infusions, still not sure if they had any part in my sudden “crash”.
After much soul searching and priceless feedback from friends, I have decided to give my body a much-needed break. Even though my anti-IgA test came back negative (which means I did not literally “reject” the SCIg, so Dr. P suggested I give it another try), my gut intuition says not to add anything new right now. So I’ve taken a step back, waiting and hoping it will all pan out and become clear. Besides, what is the rush? Yes, I know the supposed importance of Ig for my immune system/NK cells (unfortunately, the known-tolerated IVIg is only available to me in Dr. P’s office and not at home, because of insurance), but I had reached a really good level without it, so why not give myself a chance to return to that place before making any decisions?
Another good reason not to restart the SCIg at this point is the fact that I am unable to get the amino acid IVs right now. With FreAmine being discontinued, I am in limbo waiting for all the connections to be made in order to get a prescription for the replacement Aminosyn. I think it would be best to be in a routine with all my other treatments in order to unquestionably determine the affects of the SCIg.
As the weeks have passed, some really good days have returned, along with my color, but I have yet to experience tolerance for activity and the sense of well-being that I had with my measured 30 percent improvement “pre-crash.” However, this setback helped me see how far I had come and how nice a place 30 percent is! I feel confident I can return there, and beyond, and am anxious to experience 30 percent in a new way the second time around. I’ve now been through my first improvement in 20 years, along with its decline – needless to say one is fun, the other is not – but where I felt “giddy,” “exuberant” and “feisty” with my first improvement, perhaps the next time will feel different. Calmer? Gentler? Whatever it turns out to be, I’m looking forward to the opportunity
As already mentioned, I again exhibit elevated Sjogren’s antibodies, a positive ANA and a negative anti-IgA antibody. EBV-EA remains elevated, “compatible with active EB infection” and the Amino Acid panel still shows some abnormalities. IgG subclass 3 is still subnormal as it has been for the three years we’ve tested it, but my NK cell function is up from 7 to 16 (which is low-normal)…(did the four weeks of SCIg contribute to that?)
As of yet, I do not have the result of the 24 hour BP monitor or my immunobilan panel.
Wish me luck in returning to Dr. P in June or July, after he supposedly will have participated in two “think tanks” – one in London and one in New York!
A Tribute to Friendship
Friends…what would I do without them? Without them, this blog doesn’t get written, typed or posted. I don’t get rides to the doctor, participate in the CFI Study, have my prescriptions picked up or have other errands run that I am unable to do myself. Nor do I experience the priceless strength their encouragement gives me. And where would those two-hour phone calls filled with fun and laughs, but sometimes tears, come from? Or the pairs of ears that listen, and without judgment, assist me in making difficult decisions?
Friends are indeed a blessing and partly through this blog they have come into my life from just about everywhere. Allow me to dedicate this edition to one friend in particular…
Stephen was a phone-friend whom I never met in person although he didn’t live far. When I volunteered with a local charity to make “friendly phone calls” to the ill and homebound, his was the first number I was given. One and a half years later, I continued to call him at least twice a week. Stephen had COPD and was under hospice care but as is usually the case, when one reaches out to help another, I received more than I gave. Though he could never speak for long and our conversations were limited, I was blessed to be allowed to share the ups and downs of his life including his sadness after the passing of his beloved dog “Sweets” and the joy that accompanied his miraculous reuniting with his siblings after 35 years. I hope, in turn, that he found some solace in occasionally taking his mind off his problems to listen to my trials and tribulations.
Stephen’s last words to me were spoken just days before my visit to see Dr. P. He told me to have a good trip and after I was home and well rested, to call him. My intention was to call him from Lake Tahoe, but time and energy did not allow it. Following a couple of days rest, I finally called Stephen but it was too late. He had been hospitalized with a serious infection and subsequently never returned home.
Thank you, Stephen, for sharing a small part of your life with me.
On A Friend
On the comfort, the inexpressible comfort, of feeling safe with a person; having neither to weigh thoughts nor measure words, but to put them all out, just as they are, chaff and grain together, knowing that a faithful hand will take and sift them, keep what is worth keeping, and then, with the breath of kindness, blow the rest away.
– George Eliot
- Dig Deeper: Dr. Peterson Talks! Check out an interview an Dr. Peterson done during this trip
- Dig Deeper: Learn more about Dr. Peterson
- Dig Deeper: Check out more of Corinne’s blogs
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