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 ??
Sorry it took so long to respond, I've not been feeling well, my husband gave me a new bug he has!!
Regarding your question about the antibiotics: I was put on them for an embedded sinus infection. Dr. Lerner does look for other infections, but just not a lot of them.
I was on Zithromax, and Augmentin mostly. I couldn't take them because I needed to take high doses and they upset my digestive system so bad that I had to quit taking them. I was supposed to take them for a month or two, but just got too sick.
Re: Your other ?? I do have neuro sx but because of my Chiari it is difficult to separate out what is what. For the most part though, I would say that they are due to the Chiari, since they are in the locations that the Chiari affects. I also have insomnia, but I've had that for most of my life, again a sx of Chiari. And the sweats too are Chiari related or could be. I don't have a lot of problems with sweats. What I do have is that I sweat when I get hot but I over-sweat on my lower back and legs. I have been told that these are Chiari issues.
As for the Lyme being the activator, like I said, I think it's different with different people. I think that maybe we're looking at a disease with different subclasses or maybe even entirely different diseases. However, when I hear from patients with this disease, I find that while everyone seems to have the same disease, some seem to lean more toward a Fibro-type with the main sx being pain. Then there are others, like me, who have the type that have more viral-type symptoms. Now, having said that, mine did end up having more pain but kept the viral symptoms too. I think though, that the pain issues were from the Chiari Malformation/Syringomyelia.
I think that the people who start predominantly with pain sx, that their disease is caused by something else and may not actually be CFS. It may actually belong in the FMS category. The people who start predominantly with viral sx, I believe have a viral cause.
Having said that, they both could be caused by any micro-organism, just whether they are bacterial, viral, or fungal is the question.
It is also true that CMV, EBV or any virus can suppress the immune system so that they alone could be contracted and cause CFS, as could Lyme. But I do believe that whatever is causing the suppression of the immune system allows other co-infections to exist and is the key to the whole picture. As you said, it is a question of the chicken and the egg.
Again, the puzzling thing is that everyone doesn't have the same activator, or even really the same set of symptoms.
I will forever be grateful that I found Dr. Lerner. I wish I had found him years earlier because I think that's why it's taking me longer to beat it. But, I do think I will beat it. I have seen way too much improvement not to believe that Dr. Lerner is on to something. He did tell me that depending on how long I had it and how my body handled it would affect how much I recovered but he thinks I could get back a significant amount of my former self.
As for whether he has the whole pie or just a piece of it. I think for some people, he has the whole pie. If they have only CMV,EBV, HHV-6, etc. infection, then he can cure them. If, however, they have co-infections, then I believe once he gets the CMV,EBV,HHV-6, etc under control, they will also have to address these other co-infections if they want to get well. That's what I intend to do. But his idea about it being an infection in the heart, in my opinion, in absolutely correct. I have had way too many heart sx to not believe it and all of them went away when I started taking the meds. Also, remember he did have another CFS researcher agree with him that the fatigue is caused because the virus attacks the heart. Makes sense.
I think that regardless of what each of us believes, it is fair to say that we want very badly to get well. We want it for us and we want it for everyone who is sick or will get sick. Let's hope it's in our lifetimes.
Glad to have you here.
You asked why I believe CFS involves the heart so much other than the obvious research by top researchers Cheney and Lerner. My personal reasons are because of the symptoms I had and how they have improved since going on the medication. I never thought about a heart connection until I read Lerner's work. When I went to see him, I had an open mind about it. But after being on the meds for 5 months, I started to actually feel better. NOTHING had made me feel better including having Chiari surgery for my Chiari Malformation which some docs think is the cause of CFS. But I went from a 3 on the Fatigue Scale to about a 5 so far and I continue to improve. This is after 10 years of illness without ANY treatment for the infections! I know I may never regain 100% of my former self, but even if I continue at this level, I've improved so much that I can't begin to tell you what it means to me.
Because of my other health problems, I'll probably never be able to hold a job again, which is something I really wanted to do. I also had to give up a charity that I had founded myself and made a state and federally registered one. We did a lot for the children in my county. I had plans of starting my own business, and also I am a singer. I am an artist, and do interior decorating as well, so I am highly motivated to get well. However, our lives don't always turn out like we want them to and that can be hard to accept. I have grown children and a husband, but not a lot of family support for my illnesses, so it makes it difficult and also makes me want to get well. But, I can only do what I can do.
Right now, I'm experiencing a set-back due to my pain doc giving me a med that I'm having a bad reaction to. I'm hoping to begin to feel better within a few days now that I know what did it.
I think you seeing Dr. Lerner is an excellent idea. Since you already know you are having heart-related symptoms, you cannot wait. But be patient. It will take time and you will have to be very easy on yourself. He will remind you of that often. I am sorry your friend died of viral cardiomyopathy. It does happen. This kind that we have doesn't usually kill, so that is good.
Oh, you asked my heart sx: palpitations, shortness of breath, esp when lying on left side, pinching pain on left side of chest, swelling ankles, My other sx were a lot like the ones you mentioned. And yes, I COULD do exercise for the first few years, and I could push myself and did. In fact I still did up until I started seeing Dr. Lerner. I didn't know I wasn't supposed to since most docs make you think you should. Most docs treat CFS patients like Fibro patients. They tell them to exercise but not overdo it. But CFS patients shouldn't exercise at all! Hardly anyone knows this, and the people who do, docs and patients alike, don't want to hear it. But until you've been treated for the infection, you are seriously taking a chance with your health if you push yourself like that.
As for Dr. Cheney, I tried to see him, but the last time I tried, he wasn't taking any new patients since his heart transplant.
Hope I've helped. If you have any more ?? I'll try to answer them.
Hi Mike and Kim,
Thanks for your posts. Just wanted to add a few things.
Mike- It's always great to hear from another of Dr. Lerner's patients who is doing well on his protocol. I am so glad it is working for you. As I've said, I believe in him and in his research and that is why I've stuck with it for so long. I went in with an open mind and when it worked, I was pleasantly surprised but it made sense and it continues to work, so I am happy. Good luck to you on getting better and better. You were one of the lucky ones to get treatment early on in your disease. For me, I expect it will take longer for me to recover fully, or as fully as I am able, but I DO expect to recover, and that's the great part.
Kim- I've not heard that any of the top CFS researchers are saying the main culprit is fungal. I can't really speak to it, since I haven't. However, it's possible for the main micro-organism to be fungal, and then that sets up the cascade of events we recognise as CFS. My understanding and from what I have been able to find from the research is that most of the top CFS researchers believe that this has a viral or bacterial etiology. That doesn't mean that a fungus isn't one of the co-infections present in some patients, as I am sure it is. I have Candida, which I am sure many also have. It's just that I don't think there's been any research showing a fungus is the main cause of this disease. Whether it is or not, it needs to be treated, just as any other infections which are present need to be.
Hoping to hear more from everyone.
I am assuming you are coming to see Dr. Lerner. All I can tell you is what it was like for me when I started with him.
I saw him initially for about an hour or two. It's a long consultation and he takes a very thorough history and will then take blood and do an EKG. After that he will schedule you for your Holter and Echo. Since I am not from out of town, I don't know how he does his scheduling for that. But if I were you, I would call his office and ask them. They are usually very nice and helpful.
Once all the tests were in, which was a few weeks, I started my anti-viral therapy.
I'm glad to hear that you are going to see Dr. L. He is the BEST.
Please keep me informed of how you are doing and what he says.
MusicGirl, thanks for your prompt reply. Did Dr. Lerner schedule anything besides the holter and echo for you, and were they a special kind of holter and echo test to your knowledge? I already have results from both that I am planning to bring with me from another doctor (cardiologist) as a baseline, but I'm wondering if Lerner's tests are more extensive or if he does any of the impedance-type tests referred to in Dr. Peckerman's studies?
MusicGirl, just a follow-up question. My consultation may be different than your own, but were your tests completed in a day, or did they require multiple trips? I have already talked to Dr. Lerner's office, but I'm just curious. Thanks again.
Yes, my tests required several visits to Dr. Lerner's office. Esp the Holter monitor because you have to go in to have it put on and then you must return it the next day before I think 10 a.m. Dr. Lerner's office may be able to arrange a special schedule for you since you are from out of town. I don't know, since I'm not.
As for your ?? about other types of tests, he just does the ones I mentioned in addition to the blood tests and EKG, because from his research he is able to determine whether you have this viral cardiomyopathy or not from just these few tests. Having said that, if he feels from your history, that you need other tests, he will also schedule these. For instance, I have Hashimoto's Thyroiditis so he also drew blood to see if my meds were doing the job. Unfortunately, he can't do all the tests in one day. I wish he could for those of you who are from out of town. I know other specialists who see out of town patients have the same problem with scheduling. They all try to do what they can, but there are so many factors that have to be considered, such as, the length of the test, the availability of the lab or technicians, the prep for the test, whether or not it can be done at the doctor's office or must be done at a lab or hospital, how many other patients are getting the test done, etc.
I had to go to NY to see a neurosurgeon because of my Chiari/Syringomyelia and he did his best too, but I was still there for several days getting tests done and then seeing him. So, I guess it's just how things are when we have these conditions that require special testing and traveling long distances to see the specialists who handle them. May I ask where you are coming from?
Wish there was a way to expedite things as I know how hard it is to wait and how difficult it is to travel so far for testing and consultations.
Hope I've helped answer your questions. When is your first visit?