I have posted several times in this forum, but I thought I would share my story, so it would be visible to more people. My hope is that all of the research and time I spent trying to figure out CFS will be helpful to someone else. I also wanted to have only one post to check, so I can come back and answer any questions that people may have. So here goes....
The development of CFS can be triggered by almost anything that puts too much stress on the body, whether it be a bad virus, a coma, a death of a loved one, an auto accident, or over-exercising or training in sports.
Once the autonomous nervous system takes a hit, your entire pituitary-hypothalmic-thyroid-adrenal system goes off line, and it has a cascading effect on your immune system and your hormones.
The misregulation of this system is what causes many of the symptoms of CFS. Once the system is out of whack, your immune system down-regulates which causes any latent infection that you carry within your body, such as any herpes viruses (including simplex 1 &2, varicella, EBV, etc.) or bacteria (mycoplasma, lyme, etc.), to rise up and have a party. The re-activation of these infections causes additional CFS symptoms. Once stuck in this mis-regulation cycle, the body gets stuck and can't get out of it unless there is aggressive and early intervention.
I developed CFS, also known as CFIDS and ME (myalgic encephalopathy), after being in a coma due to an infection with pneumonia in 2006. I was 34 years old at the time with a new baby when I caught pneumonia and almost died. After the coma and hospitalization, one day at home while still trying to recover, I suddenly found that I could not sleep, even though I was exhausted. My brain felt wired despite the fact that my body was tired. I had muscle pains, too, and slowly began developing additional symptoms. Eventually, I had a laundry list- brain fog, nausea, insomnia, tingling in my feet, headaches, dizziness, electric zaps in my teeth, post-exertional malaise, anxiety. Having previously been an attorney working in the healthcare field, I recognized the symptoms as CFS symptoms.
I went to my primary care doctor and told her my suspicions. She asked me if I had ever had EBV in my life. I told her I had it in high school, and she said that if I had CFS, the indicators for past infection with EBV would be super-high on a blood test. We tested, and sure enough that was the case. Since she had no experience with CFS, she recommended that I go somewhere else, so I ended up at the Fibro and Fatigue Centers.
At the center, they out me on heparin and then coumadin shots to thin my blood for several months before we tested for my infections. When you have CFS, many infections hide in clumpy blood and will not show up on a blood test even though they are active. When we finally tested my infections, they found that I had EBV and HHV-6 (another herpes virus). Luckily, I had no bacterial infections.
Along with my other symptoms, I had developed severe pain in my legs and my back. My doctor told me that such pain could be a symptom of low thyroid even though my thyroid tests appeared normal, because in CFS when your system goes off-line, your body becomes less astute at converting the thyroid T-4 you are making to the thyroid T-3 usable by the body. Of course, with thyroid hormone, it has to be added very slowly to make sure there are no heart issues. My doctor put me on compounded T-3, and when we upped it to the right dose, my pain in my legs and back magically went away. This was my first success in treatment, despite taking many vitamins and supplements for several months.
Then, my doctor put me on Famvir. Famvir is a strong anti-viral usually prescribed for people who have herpes simplex 1 or 2. Taking the Famvir made me feel incredibly sick. I felt like my CFS was getting worse, and I panicked and went back to my doctor. He explained that it was the phenomena that I had read about known as die-off. When you have CFS and you start treating and killing the infections, and all of the dead bacteria release toxins which make you feel horrible. After several weeks of awful die-off, my CFS symptoms started improving, and after about one year of taking Famvir and later Valtrex, which is similar to Famvir and for herpes, I was at about 75% of my former self. I was able to work part-time and only needed to nap about 1 hour per day. Of course, I was still fatigued and had flare-ups if I over did things, because I was not 100%.
Then, in 2008, I started back-sliding. I felt like I was getting worse again. My doctor recommended that I try an experimental antiviral called Valcyte. Valcyte had been shown to help CFS patients in a study by Dr. Jose Montoya at Stanford.
Normally, Valcyte is only used for AIDs patients with herpes, but since the immune system is so weak in CFS, Montoya and others theorized that it could help with CFS. I took it for 10 months. Apparently, it is so toxic, you have to have your liver monitored while you take it, and can only take it for brief periods. Well, talk about die-off!!! I felt as horrible as I had when I first got CFS, maybe worse. It was hell for several months, but after that I slowly got my life back. Within 3 months after I finished my 10-month course, I was in full remission. My CFS was gone, and I no longer needed thyroid medicine to prevent leg pains. It was a miracle!!
I later found out that Dr. Martin Lerner, a doctor in Michigan, has been using anti-virals to help give patients near or complete remission for years, but because he was a local doctor, no one has paid him much attention. I have never visited his office, but I believe that he is the one who truly pioneered this treatment.
Unfortunately, there are limitations to this good news. In order for it to work, you have to only have viral infections and not bacterial infections with your associated CFS. Also, the earlier you attack this, the more likely you will achieve remission. The longer you have CFS the more likely it is permanent. But that being said, you can regain a significant amount of your functioning by killing viral infections in CFS, even if you don't get full remission and feeling 75% better is worth it. Even before I achieved full remission, I was enjoying life again due to the Famvir and Valtrex.
If you have any questions, please post away. I just wanted people to know that there is hope for feeling better from viral CFS as long as you pursue it and become an advocate for yourself.
Sjogren's 2002; Chronic Hives 2003; Flesh eating bacterial pneumonia, septic shock, ARDS, coma 2006; Chronic Fatigue Immune Dysfunction Syndrome 2007; Bronchiectasis 2008
"Going down the road feeling fine."