PhoenixBurger
Senior Member
- Messages
- 202
Hello all -
This is going to require some "out of the box" thinking because its not something I think many people have encountered before. I'll try to keep this incredibly complex situation as simple as I can.
I and a few others I have corresponded with have experienced long term health problems after taking a course of very potent medications. I took mine in February and have not been well since. It was a solid 28 days of hell on my body, with inflammatory reactions, neuropathy, muscle pain, fatigue, flu symptoms, and everything in the book. But they were necessary to take.
Ever since then I have been struggling with health problems that seem to have no explanation. Debilitating bouts of fatigue that last a week, then disappear as soon as they arrived. Swelling and aching in my armpits, crawling weakness sensations all over my body. Most recently swollen glands and muscle twitching began. Neuropathy, temperature sensitivity, and more intense fatigue than I've ever had to date.
This waxing and waning has continued for 9 months with the majority of that time feeling "okay", with bouts of "terrible". The bodywide muscle twitching and spasms is what finally sent me to a Neurologist. I was having cognition problems, and numerous other issues. Within 8 weeks I developed severe burning and aching in my muscles everywhere, and things started going down hill from there. All blood work, EMG, MRI, etc were completely normal. I lost at least 20lbs in the last two months. I have gone from being able to work out with *heavy* weight to being fatigued lifting 20lb dumbbells. Forget a solid workout, I am laid out with weakness for 3 days straight and muscle spasms all over the place.
My neurologist diagnosed me with beginning stage CFS or Fibromyalgia, as a result of toxicity from the medications. I requested a test for CMV and EBV and the Cytomegalovirus came back positive, current, active infection. High on both IGM and IGG. While I felt I finally had my answer, that doctor and every single other one looked at me like I was an idiot.
This is where my frustration with doctors came to a head. In the last 9 months I have been told I am imagining my symptoms, because doctors can't fathom a syndrome could exist with normal test results. None of them acknowledge any ties between CMV / EBV and coinfections with Chronic Fatigue Syndrome or Fibro. None of them will even run a PCR test to see my CMV numbers. None will run a HHV-6 test. None will agree to run a Parpovirus test. They wont do anything. All they do is refer me to someone else, I wait a month, have the same 15 minute conversation, and then get told there's no solution. One thing I am done putting up with however, is being told that Im "creating" my symptoms by "researching on the internet". To me that is the ultimate insult to a guy like myself who creates health web sites for a living, and has over 14 years experience researching health conditions. I'm no fool.
At this point I have decided to try and get in with Dr. Klimas. I fortunately live here in Miami FL. I am waiting on a call back from them. I managed to get a referral from my Neurologist so that is set.
I don't expect all of you to have the answers, but I am convinced the medications reactivated CMV (or I simply acquired it around the same time) and it has been coming and going ever since. Symptoms always worsen in relation to my level of fatigue or stress. They can completely disappear or come back. Usually it was on a monthly cycle, ironically.
I managed to get a prescription for Valtrex (even though I know its only minimally effective for CMV), and I have begun several immune boosting supplements like ProBoost, ProPax with NT Factor, and the whole list of immune supporting herbal things - cats claw, ecinacea, garlic, mushroom, etc.
How did all of you get your doctors to run all these tests? I simply don't understand! You all talk about how your doctor did this, this, and this for you. All my doctors say No, No, and No to me. I've seen 5 doctors now. Two primary care, Two neurologists, 1 infectious disease. None had a single thing to contribute to the situation. Aside from telling me that my theories on viral infections causing CFS symtpoms is utter nonsense.
This is going to require some "out of the box" thinking because its not something I think many people have encountered before. I'll try to keep this incredibly complex situation as simple as I can.
I and a few others I have corresponded with have experienced long term health problems after taking a course of very potent medications. I took mine in February and have not been well since. It was a solid 28 days of hell on my body, with inflammatory reactions, neuropathy, muscle pain, fatigue, flu symptoms, and everything in the book. But they were necessary to take.
Ever since then I have been struggling with health problems that seem to have no explanation. Debilitating bouts of fatigue that last a week, then disappear as soon as they arrived. Swelling and aching in my armpits, crawling weakness sensations all over my body. Most recently swollen glands and muscle twitching began. Neuropathy, temperature sensitivity, and more intense fatigue than I've ever had to date.
This waxing and waning has continued for 9 months with the majority of that time feeling "okay", with bouts of "terrible". The bodywide muscle twitching and spasms is what finally sent me to a Neurologist. I was having cognition problems, and numerous other issues. Within 8 weeks I developed severe burning and aching in my muscles everywhere, and things started going down hill from there. All blood work, EMG, MRI, etc were completely normal. I lost at least 20lbs in the last two months. I have gone from being able to work out with *heavy* weight to being fatigued lifting 20lb dumbbells. Forget a solid workout, I am laid out with weakness for 3 days straight and muscle spasms all over the place.
My neurologist diagnosed me with beginning stage CFS or Fibromyalgia, as a result of toxicity from the medications. I requested a test for CMV and EBV and the Cytomegalovirus came back positive, current, active infection. High on both IGM and IGG. While I felt I finally had my answer, that doctor and every single other one looked at me like I was an idiot.
This is where my frustration with doctors came to a head. In the last 9 months I have been told I am imagining my symptoms, because doctors can't fathom a syndrome could exist with normal test results. None of them acknowledge any ties between CMV / EBV and coinfections with Chronic Fatigue Syndrome or Fibro. None of them will even run a PCR test to see my CMV numbers. None will run a HHV-6 test. None will agree to run a Parpovirus test. They wont do anything. All they do is refer me to someone else, I wait a month, have the same 15 minute conversation, and then get told there's no solution. One thing I am done putting up with however, is being told that Im "creating" my symptoms by "researching on the internet". To me that is the ultimate insult to a guy like myself who creates health web sites for a living, and has over 14 years experience researching health conditions. I'm no fool.
At this point I have decided to try and get in with Dr. Klimas. I fortunately live here in Miami FL. I am waiting on a call back from them. I managed to get a referral from my Neurologist so that is set.
I don't expect all of you to have the answers, but I am convinced the medications reactivated CMV (or I simply acquired it around the same time) and it has been coming and going ever since. Symptoms always worsen in relation to my level of fatigue or stress. They can completely disappear or come back. Usually it was on a monthly cycle, ironically.
I managed to get a prescription for Valtrex (even though I know its only minimally effective for CMV), and I have begun several immune boosting supplements like ProBoost, ProPax with NT Factor, and the whole list of immune supporting herbal things - cats claw, ecinacea, garlic, mushroom, etc.
How did all of you get your doctors to run all these tests? I simply don't understand! You all talk about how your doctor did this, this, and this for you. All my doctors say No, No, and No to me. I've seen 5 doctors now. Two primary care, Two neurologists, 1 infectious disease. None had a single thing to contribute to the situation. Aside from telling me that my theories on viral infections causing CFS symtpoms is utter nonsense.