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(Last year Corinne provided a five part series of her experience as a first time patient with Dr. Peterson. Now she’s back 8 months later to report on how everything has gone and how her second visit with Dr. Peterson went. Check out her first report here)
As promised, I would like to share with you my first follow-up visit with Dr. P. and all that experience entailed. If you recall, my first visit was in June 2009. He suggested I return in December or January but because I was bedridden (the usual post-holiday collapse), and a forecast of 10 feet of snow predicted for Lake Tahoe, I rescheduled for February.
So, eight months after my first visit, I returned to Incline Village. Because it was the dead of winter we did not consider taking the RV. However, we did drive – two days in each direction. This was much more physically demanding for me and my husband “the chauffeur” (hotels cannot compare to a ‘home on wheels’). However, we made it safely with only two encounters with snowy driving.
Allow me to digress back to the first visit before I continue on. I feel the need to “come clean” so to speak. The truth is I cried during the exercise stress test. Yes, I did. Believe me that is not an easy thing to do when your nose is pinched closed and your mouth is maintaining a firm seal around a 1-inch diameter tube. Why did I cry you ask? Well, I remember feeling extremely frustrated at how difficult it was for me to keep up the cadence required on the bicycle. When the tension was increased yet again my mind flashed back to the last time I took this test… as a very fit and healthy fitness instructor 20 years ago… and so I cried. The poor exercise tech (ET). I remember his words clearly… “No, no you can’t cry”. I immediately thought of Tom Hanks in A League of Their Own “there’s no crying in baseball!” But I couldn’t laugh either.
The ET was trying his best to help me regain my composure. He ran over to the blinds and raised them… “Look! Look! Lake Tahoe!” he said. I waved to him to close the blinds as the light was too bright for my sensitive eyes. He ran over to the monitor and swiveled it in my direction, pointing out the hills and valleys on the screen and indicating where I needed to maintain my line on the graph. That just made me want to cry more. I waved at the screen and said “I ‘ant’ ‘ocus” with my mouth gripping the tube. “I can’t understand you” he said. I yelled “I ‘ANT ‘OCUS!”. “Oh, you can’t focus” he said. He sounded so dejected. I put my head on the handlebars unable to push another revolution. I stopped. That was it. Done. Finished. Over. I felt like such a quitter although a quitter I am not. Amen to that.
So now you know and I feel better, so let me get back to the follow-up J.
My first appointment was scheduled for early Tuesday a.m. As usual, at the first appointment Dr. P. doesn’t say much. He asks how I’m doing and how long I am staying while staring down at my file. He immediately writes up an order for lab work and then mentions that he’d like to get me started on some IV drips. After he leaves, the nurse comes in and hands me the lab order. She then schedules me for IV drips of gamma globulin (to help my immune system lower the viral load) for the following day, followed by amino acid drips the same day, and finally an appointment to see Dr. P. again on Friday with the possibility of saline drips to follow.
While I am there I am asked if I would like to participate in a study being done by Dr. P. and Dr. DeMeirleir by donating some urine. The title of this study is “Neuro-Toxic Metabolite Test to detect the presence of abnormal metabolites in urine” (metabolites related to the production of hydrogen sulfide (H2S). I wholeheartedly agree to take part and make my donation and then off to the lab I go. At the lab, at least 10 vials of blood are drawn along with two more “cups” of urine. I am told that I am being tested for XMRV. The phlebotomist’s tone of voice suggests that Dr. P. doesn’t test every patient for it, however I’m not sure if that is a correct assumption or not. My husband then drives us back to our Carson City hotel room where I can rest for the remainder of the day.
On Wednesday morning we drive over the mountain to Incline Village in very snowy conditions. You might call the last 10 miles “Mr. Toad’s Wild Ride” (Disneyland). We are grateful to be driving a four-wheel drive and all’s well that ends well. I arrive for my 10:00 a.m. gamma globulin IV drips, and since this is my first time receiving one, the drip rate is set at a very slow rate. I lie comfortably on the exam table for the three hours required and then we return to the hotel.
That morning, on the way to Incline Village, we had to stop at a lab in Carson City to get blood drawn for my a.m. cortisol levels. A couple of hours after returning to the hotel, we had to again take a short drive back to the same lab to have my p.m. levels drawn. The a.m./p.m. cortisol blood test is a bit inconvenient as it must be done on the same day and at the same lab, with one sample being drawn between 8:00 and 9:00 a.m., and the other between 3:00 and 4:00 p.m. By 4:00 p.m. we are back at the hotel to stay.
On Thursday morning once again the skies are blue and the drive over the mountain to Incline Village is “Christmas card beautiful”. Today I receive my amino acid drips. Even though my amino acid profile had yet to return, the nurse tells me it is virtually a given that being this sick, I would need some amino acids. Later on when I received my test results, it is confirmed that my amino acid profile is abnormal. My homocysteine level shows zero. (My local doctor later tells me this is quite significant as homocysteine is a byproduct of one of the most common chemical processes of the body).
For this infusion I am put in a separate IV room on one of the three recliners. (The latest news from Dr. P. is that they have acquired the office next door and converted it into a new IV room with nine recliners so that IV’s can be done virtually at any time). After about an hour, the drip rate is increased but when I express feeling a bit lightheaded it is lowered again. After a while, it is once again increased and all is well. Total time: just under three hours. (AA drips done at home average two hours).
On Friday morning we are scheduled to meet Dr. P. early so we can hit the road and avoid an incoming storm. During this appointment I ask if he is able to classify me as any particular subset of CFS. My test results from this visit are not all in, however, he quickly says he would start by labeling me as having POTS (Posturla Orthostatic Tachycardia Syndrome) as my autonomic system is severely dysfunctional. Since last August, I have been self-administering injections of Procrit every other week and when I ask him if I should continue he answers emphatically “YES, PLEASE!”. That surprises me a bit since I had not had any noticeable improvement in my symptoms but apparently he likes what he’s seeing on the twice per month lab tests I am taking with regards to my red blood cell count, hemocrit, hemoglobin, etc. This is in addition to the fact that it has raised my average blood pressure. (I monitor that myself several times a day and have kept record of the changes).
Before we leave, he writes me a prescription for Valtrex (a herpes antiviral) after we discuss the severe side effects of the other antivirals, Vistide and Valcyte. He wants me to start on the most tolerable of antivirals and when I ask him which of my re-activated viruses he is targeting, he responds “HHV-6”. He assures me the Valtrex will be well tolerated (and indeed it is). Prior to our departure I take the extra time needed to receive saline drips because he believes it would help me on the drive home. I do so and the extra 25 minutes is well worth it. (We had an 8 hour drive that day and I managed it pretty well).
By 10:00 a.m. we are on the road. By evening I am feeling chilled and my throat is sore. By the time we arrive home the following day, I have a fever and a cough – obviously a cold. However, within two days it is totally gone – amazing considering the physical and emotional stress of the trip. I don’t hesitate to attribute that to the gamma globulin drips (confirmed later by Dr. P.).
Update #1 (May 2010)
I am now into five weeks of Valtrex. My overall assessment is that it has helped. I have felt less fluish and on some days (not all) have felt better than I have in years. In fact, the last month has been better than usual. I still have my down days, however, but so far I have been able to bounce back quicker than usual. I’m keeping my fingers crossed J.
Since then, I’ve also started taking a gut antibiotic called Xafoxan after my immunobilian panel came back and Dr. P. diagnosed me with ‘intestinal dysbiosis’. My test results show elevated antibodies to some strains of ‘bad’ gut bacteria (leaky gut?). Xafoxan is an antibiotic used for traveler’s diarrhea. It is not absorbed into the bloodstream, but stays in the intestinal tract. (good news for someone chemically sensitive). Normal dosages are for a few days but I must take it for four weeks! I am on week number three and so far, it too is very well-tolerated.
After the four weeks, I am then instructed to take a slightly expensive specialty probiotic I can only find online, called “VSL#3” twice a day for an additional four weeks. Although this seems a bit daunting, I am visualizing it as a real positive and just another one of the layers of the onion Dr. P. likes to peel back and attack… one by one…. I ask myself how can bad gut bacteria be a good thing? So I am anxiously looking forward to destroying all of those “buggers” and starting over by replenishing my digestive tract with a new and healthy bacteria. Hopefully this will result in better immune function, better digestion and feeling better overall
Other test results I have since received show a very low natural killer cell function and numbers, continued IgG subclass 3 deficiency and very elevated interleukin 8 levels, along with the intestinal dysbiosis and amino acid abnormalities. (which Dr. P attributes to malassumption as a result of the intestinal dysbiosis). Additional tests show no evidence of gamma B. cell or T cell clonal rearrangement. Additional tests show my serum and urine osmolality are within normal limits, and quoting Dr. P “interestingly, your serotonin levels are normal”. (I am not sure why he finds that interesting except that perhaps it is because he knows I have been under severe emotional stress). My XMRV results eventually returned as “none detected.” However, the test done was not the newer antibody test but was currently, “the definitive test” at that time. I expect I might be re-tested when I return.
Currently I am trying to get Dr. P. and a local physician to collaborate on continuing the IV drips I received in my follow-up. (Dr. P. suggests this should be done on a regular basis. So far this has been the most difficult part. I will keep you posted. I hope to return to Incline Village this summer.
UPDATE #2 (August 2010)
I have been on Valtrex (500 mg) twice a day (since April 1, 2010). April and May were probably the best two months I had experienced in years. However, due to a boatload of stress related to personal issues, I must say I did not do as well the next two months. I am sticking with it though as the stories I have read regarding Valtrex often state that it took a year before positive results were seen. I am looking forward to getting through my emotional down time and continuing the healing process. Since I finished the course of Xafoxan and VSL#3, my digestive tract has changed for the better. I have lowered my need for Cimetidine (Tagamet) to only a small dose at bedtime and the truth is, I may not even need that. I no longer experience reflux or gastritis-type symptoms and I have gone from a very slow-moving constipated bowel to one that is more regular. I continue to use the over-the-counter probiotic.
Meanwhile, I have found a local physician who is willing to collaborate with Dr. P. and who will administer my IV drips. I am receiving amino acid drips and saline drips once a week. Because they cannot be given on the same day and I physically unable to make twice-weekly visits to the doctor’s office, I have been researching my options. I have been able to obtain a home nursing service to administer my saline drips in the comfort of my own recliner! Both the amino acids and saline drips are relatively inexpensive. However, with the assistance of Medicare, I hope to lower the cost of each.
The only thing I cannot obtain is the IV gamma globulin. Dr. P. warned this would be virtually impossible as it is very cost prohibitive. It seems that IVGG is stockpiled by the military and is a relatively rare commodity, so it is extremely expense (anywhere but in Dr. P’s!). I continue to consistently have lab tests done – one set of lab tests every other week to monitor the Prochit injections and Veltrax and another set of lab tests two days after the AA drips. I have been receiving the drips for about six weeks now. I will better evaluate them after I receive them more consistently. However, I must say that I do feel better the day of and the day after my saline drips.
My next appointment with Dr. P. is in September. Dr. P’s nurses continue to return my phone calls and answer questions whenever I have them. They have been extremely helpful.
I am looking forward to my next visit which I will attempt to go via airplane. I am bit nervous about that as it will be the first time I have flown since having CFS/ME, so wish me luck!
All in all, I will say my fluish symptoms are much improved (tender glands, chills, sore throat, sweats, etc.). However, my orthostatic intolerance (OI) seems to have worsened (because of the stress?). IO symptoms are headaches, head pain and lightheadedness. I have been able to get out of bed and dressed every day, something I could not do a year ago. I also have been able to do more cooking and I even went out to lunch with my husband for the first time in years.
Unfortunately, I have not noticed an ability to lessen my nap and sleep time. Nor have I been able to use a computer without getting severe headaches. But with Dr. P. as my doctor, there is always H-O-P-E and always that excitement of wondering what he will want to try next.
Will keep you posted!