Cort
Phoenix Rising Founder
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- 7,390
By Corinne
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 (2nd 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
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
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.
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 (2nd 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
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
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.