Hi everyone,
It's the first time i actually add a blog post to Phoenix Rising, and thought this would be the ideal format to pose a question to the group, and see if anyone can help me solve a very specific riddle: the only time I was fully symptom-free during my many years dealing with this awful condition.
For those that don't know me, I have been dealing with CFS for 16 years, and it has been increasingly getting worse over the years. I was formally diagnosed with moderate ME/CFS by a specialist in 2013. I have also tested positive for Lyme disease three times, clearly and without a doubt, by standard WB and most recently by Igenex test (which also came out as strongly CDC-positive for Lyme). Also strong positive for Bartonella, cPN, and EBV titres off the charts.
I have been bed-ridden before, but for the most part I have enjoyed a level of mobility.
Despite the crushing fatigue, my most relentless and frustrating symptoms are neuro-cognitive (brain-fog, lethargy, severe memory problems, lack of concentration). Those have worsened over time, leaving me with a non-functioning memory and the attention span of a fruit fly. It has affected my life prospects, career and dreams in which I never imagined. I was working full time and applying to start a second post-graduate program after I completed my masters degree when this thing hit me hard. I was never able to resume that academic path. Let me say that my photographic memory was extremely sharp and precise before I fell ill. That gift took me from growing up in poverty to postgraduate degrees in major universities.
I no longer have that gift. I'm a complete scatterbrained mess now.
In my many years dealing with this awful condition, I have had good day and bad days, periods of time when I was better, and times when I was bed-ridden. There were three brief and fleeting occasions in which I felt almost normal... but one of those three times in these long 16 years was clearly and unequivocally distinct. For one wonderful week I was normal. I was symptom free. I had zero brainfog. I was myself again. This is how it happened:
In 2011 I was hospitalized for a major operation, completely unrelated to ME/CFS or Lyme (orthopedic and quite severe). I was in agony, and doctors had to intervene right away. It was a very invasive operation, and it required me to stay at that NY hospital for about 10 days. Can't even begin to describe how painful the whole ordeal was.
Well, something amazing happened during my hospitalization: around the third day at the hospital, the neuro-cognitive problems and crushing fatigue started to dissipate. By the fourth day my mind was clear and sharp, like it was before I fell ill. I had not experienced anything this intense in about 12 years... and keep in mind I was in a hospital bed, in unbelievable pain, recovering from a very invasive operation, and on a lot of painkillers to calm it down. Still, my mind was sharp, my memory back, my wits at my disposal. How could that be?
Those days at the hospital I tried to read as much as I could, I watched old favorite movies that I knew by heart in the iPad... I could recite "Star Wars" again, as I was watching it to the astonishment of the relatives and friends that visited me at the hospital. For about a week, I really felt like somehow, miraculously, I had been cured.
That joy didn't last, though. I was released from the hospital to recover at home, and within a couple of days all the symptoms came back. That brief moment of joy was gone, and I was back in the deep dark hole.
For the longest time I obsessed about what could have been the factor that made a difference. Was it the lack of mobility? Was it the pristine, oxygen-rich hospital environment, or any of the drugs that they administered me while I stayed there? Believe me, I mulled over this for a long time, and tried all sorts of tests.
I couldn't be the lack of mobility or the oxygen-rich environment: I have been hospitalized twice since 2011 for similar periods of time, but without such miraculous benefit in my ME/CFS-Lyme symptoms.
Recently I decided to request a full report from that hospital listing all the medications and treatments that were administered to me during that operation and recovery. It was a very thick tome of photocopied papers containing very detailed info, but patiently I parsed every drug, every dosage and frequency to find any patterns or anything unique.
Many of the medications they gave me at the hospital I had taken before and after my stay (painkillers, Lyrica, amoxicillin). They could not be the cause of the sudden remission since they never had a similar effect on me, neither before nor after.
They also gave me over-the-counter digestive pills to help with the side effects of the painkillers (docusate, pepto, etc). Those couldn't be either, since I take them regularly, and never had such effect before.
After parsing all the data, I noticed there were two very strong medications that I had never taken before (or after that operation, for that matter). I have the feeling that one of these two medications, or a combination of both may have been the cause of that brief period of relief:
Your expertise, ideas, suggestions, and theories are welcome. Looking forward to read your comments and hopefully get closer to a solution. Thank you!
PS: paging @Valentijn @Sushi @Jonathan Edwards @duncan - I'm sure you have wise and interesting theories on this case.
It's the first time i actually add a blog post to Phoenix Rising, and thought this would be the ideal format to pose a question to the group, and see if anyone can help me solve a very specific riddle: the only time I was fully symptom-free during my many years dealing with this awful condition.
For those that don't know me, I have been dealing with CFS for 16 years, and it has been increasingly getting worse over the years. I was formally diagnosed with moderate ME/CFS by a specialist in 2013. I have also tested positive for Lyme disease three times, clearly and without a doubt, by standard WB and most recently by Igenex test (which also came out as strongly CDC-positive for Lyme). Also strong positive for Bartonella, cPN, and EBV titres off the charts.
I have been bed-ridden before, but for the most part I have enjoyed a level of mobility.
Despite the crushing fatigue, my most relentless and frustrating symptoms are neuro-cognitive (brain-fog, lethargy, severe memory problems, lack of concentration). Those have worsened over time, leaving me with a non-functioning memory and the attention span of a fruit fly. It has affected my life prospects, career and dreams in which I never imagined. I was working full time and applying to start a second post-graduate program after I completed my masters degree when this thing hit me hard. I was never able to resume that academic path. Let me say that my photographic memory was extremely sharp and precise before I fell ill. That gift took me from growing up in poverty to postgraduate degrees in major universities.
I no longer have that gift. I'm a complete scatterbrained mess now.
In my many years dealing with this awful condition, I have had good day and bad days, periods of time when I was better, and times when I was bed-ridden. There were three brief and fleeting occasions in which I felt almost normal... but one of those three times in these long 16 years was clearly and unequivocally distinct. For one wonderful week I was normal. I was symptom free. I had zero brainfog. I was myself again. This is how it happened:
In 2011 I was hospitalized for a major operation, completely unrelated to ME/CFS or Lyme (orthopedic and quite severe). I was in agony, and doctors had to intervene right away. It was a very invasive operation, and it required me to stay at that NY hospital for about 10 days. Can't even begin to describe how painful the whole ordeal was.
Well, something amazing happened during my hospitalization: around the third day at the hospital, the neuro-cognitive problems and crushing fatigue started to dissipate. By the fourth day my mind was clear and sharp, like it was before I fell ill. I had not experienced anything this intense in about 12 years... and keep in mind I was in a hospital bed, in unbelievable pain, recovering from a very invasive operation, and on a lot of painkillers to calm it down. Still, my mind was sharp, my memory back, my wits at my disposal. How could that be?
Those days at the hospital I tried to read as much as I could, I watched old favorite movies that I knew by heart in the iPad... I could recite "Star Wars" again, as I was watching it to the astonishment of the relatives and friends that visited me at the hospital. For about a week, I really felt like somehow, miraculously, I had been cured.
That joy didn't last, though. I was released from the hospital to recover at home, and within a couple of days all the symptoms came back. That brief moment of joy was gone, and I was back in the deep dark hole.
For the longest time I obsessed about what could have been the factor that made a difference. Was it the lack of mobility? Was it the pristine, oxygen-rich hospital environment, or any of the drugs that they administered me while I stayed there? Believe me, I mulled over this for a long time, and tried all sorts of tests.
I couldn't be the lack of mobility or the oxygen-rich environment: I have been hospitalized twice since 2011 for similar periods of time, but without such miraculous benefit in my ME/CFS-Lyme symptoms.
Recently I decided to request a full report from that hospital listing all the medications and treatments that were administered to me during that operation and recovery. It was a very thick tome of photocopied papers containing very detailed info, but patiently I parsed every drug, every dosage and frequency to find any patterns or anything unique.
Many of the medications they gave me at the hospital I had taken before and after my stay (painkillers, Lyrica, amoxicillin). They could not be the cause of the sudden remission since they never had a similar effect on me, neither before nor after.
They also gave me over-the-counter digestive pills to help with the side effects of the painkillers (docusate, pepto, etc). Those couldn't be either, since I take them regularly, and never had such effect before.
After parsing all the data, I noticed there were two very strong medications that I had never taken before (or after that operation, for that matter). I have the feeling that one of these two medications, or a combination of both may have been the cause of that brief period of relief:
- Vancomycin 1000mg IV (the first three days)
- Dexamethasone (Decadron) 50 ml IV (every day during my stay, alongside Prednisone 10mg)
- Was it the very strong antibiotic Vancomycin that knocked out whatever bugs are eating away my nervous system, possibly in combination with the amoxicillin?
- Was it the very strong anti-inflammatory Decadron that calmed down a severe inflammatory process ongoing in my nervous system, possibly in combination with the steroid Prednisone?
- Could it be the combination of anti-inflammatory and antibiotics that had that quick and noticeable improvement in my condition?
Your expertise, ideas, suggestions, and theories are welcome. Looking forward to read your comments and hopefully get closer to a solution. Thank you!
PS: paging @Valentijn @Sushi @Jonathan Edwards @duncan - I'm sure you have wise and interesting theories on this case.