Silence Equals Death?

Part of the challenge of being a patient with Lyme Disease is that I must navigate the medical/political territory with some care. I can't pretend that my writings here are anonymous. Therefore, I do have to consider that my insurance provider could come across my writings and somehow use them against me.

My bigger concern, however, is for my doctors. At this point, I'm not getting treatment. The insurance company retroactively denied what little treatment I was getting. According to them, I am cured of Lyme. I'm told that Harvard Pilgrim Health Care has a lifetime limit on how much treatment you can receive for Lyme Disease. So, how much worse can it get for me, really? I don't think they can proactively kill me.

They can, however, make big trouble for doctors. Did you know that they can file claims against doctors anonymously? Its a twisted used of confidentiality laws which allow patients or employees to make reports without feeling vulnerable to their doctor or boss. I think we need to clarify those laws and limit who can make claims with anonymity. When a corporation with big pockets can file claims, they can ruin the reputation of or bankrupt a doctor just because they don't want to pay for patient care. Even if the cases have no merit, they cost the doctors so much in legal fees that they can no longer practice medicine. Its called harassment, in my book. Since most medical offices receive the vast majority of their income via their patients' insurance companies, they live in fear of the power these companies have over them.

Even when doctors have no claims that patients have suffered harm under their care, they can be dragged through years of hell in courts. Look at the case of Dr. Jones, the only pediatric doctor in Connecticut who will treat children with persistent Lyme. What is striking about the continuing pursuit by the medical board is that never, in any single complaint, is anyone saying that his patients were not treated well. Indeed, they thrived under his care, most after suffering quite some time under the care, or lack thereof, of other doctors. He is 80 years old and unwilling to shut down his practice because no one else will treat these children. When you read the article, note the punishment handed down to him and what his supposed infractions are compared to other punishments meted out by the state medical board. He is punished for reading test results and consulting over the phone and then prescribing antibiotics - which did help the patients - far more harshly than doctors who are practicing under the influence of mind-altering substances.

I point out this ridiculously unfair system because I must be sensitive to it as I try to share my experience with fighting for my health care. I have recently had appointments with two different doctors. They reach the same conclusions: I continue to test positive for Lyme & I have demylineation of my nerves. I need treatment for both.

How to get me treatment and the experiences of each doctor are vastly different. They are different because they are human beings with different temperaments and personal styles and different current life circumstances. They are also different because one of them is beholden to the insurance companies for an income and the other is not. Another difference: one is in a state with a modicum of protection written into the state laws now and the other is in a state where the same law is being held hostage. Both have been threatened with sanctions from their respective medical boards. For one, this creates a wariness. For the other it does not.

If I were not a patient who was "in the know" about what goes on behind the scenes in the medical world, I would have no idea why I could experience such a range of possibilities. (Of course, the other possibility is a neurologist who denies that I'm sick at all. Who buys into the IDSA claim that all of us who continue to have symptoms after 4 weeks of antibiotics are victims of a psychosomatic syndrome. I fired those doctors.)

This blog is designed to be informative. I'm a layperson, so I can only inform about the medical particulars in a layperson's way. What I can impart with authority is the patient experience. The painful, frustrating, drawn out experience. The reader can best get a sense of it if I can share details. The devil is in the details, right? The comparison of my last two appointments would be illuminating. It could help other patients know what to look for and what they might be up against, even when working with doctors who want to help you.

However, I'm not sure I can do that. As soon as I discuss details, I risk the anonymity of my doctors. I also risk them taking it the wrong way. They do their work under a lot of duress and I don't want to add to that. That puts my own care at risk. Frankly, I can't afford to raise the risk that I won't get care. The road to treatment is so precarious as it is.

Yet, I have long understood the slogan 'Silence Equals Death.'  Abusers and oppressors count on it. Our own self-preservation can be dependent on the very ones who abuse and oppress us. The brave souls who risk everything by speaking out at their own peril trigger the beginning of the end of abuse. My concern is more complicated, because it is not simply myself I put at risk. Yet, I'm not sure that, even if it were just me, I would take the risk right now. I need to get treatment. I have two possible paths for getting it. Each has pitfalls. Each could fail. Both could fail. Yet, one might succeed. I'm not willing to risk that, just yet. I guess I'm not that brave. Perhaps later I can craft a way of telling this part of the story without risking others. I'll work on that.

For now, I'll simply say that the process is frustrating. It's been two and half years since my first diagnosis of Lyme Disease. It took two years to get that diagnosis. I continue to be amazed that everyone can so blithely tell me to be patient. One of the docs informed me that it can take months, once the application is submitted, to get approval from the insurance company for IvIg treatment. I am looking at the earliest possible beginning of treatment in July. That's if all goes well. Nothing has gone well so far.

Later in the week, I'll write about a test that had not been done for me before: the CD57. As with everything else related to Lyme, it is controversial.