1. a view, judgment, or appraisal formed in the mind about a particular matter
3. a formal expression of judgment or advice by an expert
Everything I am writing is my opinion only. Someone commented anonymously on my last post that it is irresponsible of me to post my clinical impressions. I am contemplating that deeply.
The most well known physicians caring for patients with CFS and chronic Lyme Disease don’t hesitate to put their clinical impressions out there publicly. Desperate patients who can’t afford their services try to make sense of their diseases from what they’ve read on the internet. I am not currently in practice, but I have perspective. Many perspectives. Most of the people reading and writing to me, clearly understand that I cannot give them personal medical advice. I am reporting on our experience, but part of my experience is a large volume of email from patients who share their histories. It has become an incredible learning tool for me. In addition, I am in touch with most of the physicians in the country who have prescribed antiretrovirals for XMRV+ patients. And I have 25 years of clinical experience under my belt, in both conventional and alternative medicine.
The reality is that I disagree with almost everything with respect to the current ‘approach to treatment’ of CFS/chronic Lyme. Yes, there is a ‘mitochondrial defect’, diastolic dysfunction and many other dysfunctions too. Much has been made of the cardiac abnormalities observed on echocardiagram in CFS patients. Personally, I’d rather see the attention paid to brain function. But the reality is that any organ that you study carefully will likely show the disease. It is a multi-system illness. My cardiac abnormalities were picked up by a careful cardiologist in 1996. They have not progressed. Some of the abnormalities noted then are better now. In fact, I was athletic with diastolic dysfunction for almost a decade. Some CFS patients have been told that they have heart failure, but it is clear that the cardiac dysfunction that is being noted on careful echo does not progress the way that classic CHF or PH does. Those patients are generally dead in a very few years.
The best way to treat the metabolic and functional abnormalities that are caused by the virus is to shut down the virus. It’s true in HIV disease. It’s common sense. We may or may not be able to do it with available drugs. Time will tell. We know that the drugs move the disease. They really don’t do much but interfere with retroviral replication, other than AZT (inconsequential macrocytosis and a few long-term side effects that take years to develop and may or may not be worth it, depending upon new drug development). The drugs can have some adverse effects on the kidney and liver that are easily monitored. It would be wonderful if tenofovir and raltegravir alone do it. For the moment, we know that HAART for HIV relies on synergies between three or four drugs.
I would like to remind everyone that many were saved from horrible AIDS deaths by AZT before there were viral load measures available. And they got the dose wrong for a while. That may happen this time too. There were courageous doctors on the frontier then also, before the science had given them the answers. A very few of them are on board for the coming struggle. Many, many more are needed.
My clinical intuition and personal experience getting on the drugs tell me that this group of patients would have an easier time of it starting out on a low dose and going up slowly, possibly something like a quarter tab of one drug, going up a quarter tab a week, until all three drugs are on board. The inflammatory flare can’t be a good thing. The problem with this strategy is the possibility of encouraging resistance to the drugs. Until we know more about how stable the virus is, we are completely in the dark about this. It may be that it doesn’t take HIV doses to suppress X/P. But the Singh paper showed that X is slightly less inhibited than HIV at the same drug concentrations in vitro. So for now, until we have viral load measures, it seems prudent to stick to established HIV doses.
I am speculating along with all of you as to what it means that lots of infected people are clinically healthy. There are many possibilities. It may take more than one virus to get sick. It may take a very, very long time for some people to get sick. It may require a genetic predisposition to get sick. It may take the presence of virus and a particular injury or trigger. There are likely genetic restriction factors involved in staying well.
It seems to me that it would be irresponsible of me not to report, so that patients who are choosing to try antiretrovirals on their own know what to expect, at least know what I know. There is so little information available and without viral load measures, it’s all guess work. For now, we must rely on clinical intuition. That’s what a good doctor does everyday anyway.
If my luck holds out, I will have my own patients soon. If my last Lyme doctor is reading, I wish he would comment on what he thought my chances were a year ago of my returning to work.
My intention is to continue to report my experience and opinions. My assumption is that everyone reading knows I could be wrong about anything. It’s all just my best guess.