Thanks for your reply. It's great when I get to speak to another patient of Dr. Lerner's. I've spoken with several over the last couple of years and they have had varying responses to the treatment.
As for your questions regarding Lyme. I have been tested a number of times by several different doctors for lyme and it always comes back negative. I can't say positively, but that would make me think that I don't have it. I do however, think that your theory of Lyme being the "activator" in some people is a possibility. What I think could be happening is that there is an "activator" which causes our bodies to stop suppresssing CMV,EBV, HHV-6, etc. In essence, it suppresses our immune systems. I know mine is suppressed because I've had tests on it and I showed a significantly lower response than I should have, indicating that my cell-mediated immunity isn't working properly. That is the part of the immune system that identifies the microorganism so that the body can mount a defense and begins the defense action. Obviously, without that, there is no defense. But, keep in mind that an infection can also suppress the immune system, so that means that CMV or any of viral, bacterial, or fungal infection could be suppressing it.
Anyway, back to the activator theory. Something happens that impacts the immune system, thus activating one or more viruses and viola! CFS. I think that the sticking point in research is the fact that the activator, and the thing that impacts the immune system can be one and the same or two completely different things. And to top it off, it can be totally different person to person. That makes this a very difficult disease to conquer.
As for Dr. Lerner. I believe he has a big portion of the puzzle correct. Obviously, or I and others wouldn't be getting better. BUT I also believe that there are other co-infections present. In fact, I am seeing a neurologist for sleep who just happens to also specialize in CFS/FMS and works with the Fibro and Fatigue Clinics. He has tested me for other infections and also tested my hormone levels. As you know, the HPA axis gets out of whack with this disease too. He is planning on treating me for the hormone problems soon. He believes that is part of my sleep problems. I know sleep problems are part of this whole mess too. And in addition, I have another health issue that impacts most of my body, including sleep, energy pain, etc. and that is that I have Chiari I Malformation and Syringomyelia. This is a pretty uncommon condition, or was until recently when it became easier to I D by MRI. It is where your skull is too small at the back of your head and it isn't noticed for years and over time the back of your brain is forced (herniated) down into your spine. The Syringomyelia part occurs in some people with this disorder when the herniated brain blocks the flow of CSF(cerebrospinal fluid) to the point that there is only a pin-size area for it to come through to continue it's circulation around the spine and brain, so it comes out with such force that it actually injects itself into the spine causing blister-like sacs called syrinx (syringes=plural). These cause outward pressure on the tissue of the spinal column, causing nerve damage that can become permanent. If left alone this can lead to paralysis. If the Chiari I Malformation (hindbrain herniation) isn't taken care of, and a person coughs, sneezes, or has a fall, they can actually become paralysed or die. Even if none of these awful things happen, the symptoms can become overwhelming, leading to disability.
Anyway, these disorders affect the brainstem area since the brain is wrapped around them when it is herniated. Even though I have had the surgery to remove it, I still have brain tissue wrapped around the brainstem so I suffer symptoms.
The whole reason I told you this is because Chiari symptoms can mimic CFS. In fact, a few doctors believe that Chiari causes CFS. However, mainstream thinking doesn't support that. It is possible though to have a cervical myelpathy which will cause CFS-like symptoms. That is why anyone diagnosed with CFS should have an MRI and a work-up by a neurologist. Most docs already rule out MS with an MRI, but many radiologists don't even report a Chiari Malformation because they were trained to think that it was a normal anomaly until recently.
Geez, I'm sorry, I just wrote a book on this subject!
Back to your post...you asked a couple ??
My symptoms before treatment were very similar to having a viral infection all the time:
low grade fevers, sore throat, swollen glands, white sore spots in mouth and on tongue, joint/muscle pain, extreme fatigue, fuzzy thinking, blurred vision, no stamina, easy to contract illnesses, palpitations, heart aching, shortness of breath.
Symptoms that are gone or better: Better: fevers, sore throat, swollen glands, spots in mouth and on tongue, easy to get ill, palpitations, heart aching, shortness of breath, fatigue is better, not gone yet, joint/muscle pain remains. The fatigue and joint/muscle pain seem to be the ones that are the hardest for me to overcome, however, I also am not as compliant as I am supposed to be sometimes with the rest portion of the treatment.
As for the tests Dr. Lerner ran: He found T-wave abnormalities, elevated viral titers, mitral and tri-cuspid valve abnormalities. I also had symptoms of congestive heart failure which can be caused by a viral infection in the heart. Those symptoms are swollen ankles and shortness of breath and heart pain.
As for your T-wave abnormalities. Those with elevated viral titers do indicate viral infection in your heart. At least that is what all of Dr. Lerner's research has shown. It is possible that you have Lyme and also have CMV in your heart and so should be treated for both. Just a thought.
Let me know what you think of this info. I'm very interested in keeping in touch about this stuff. Do you live in Mich? I would definitely like to have your email addy.