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a small step in the process

I had my first visit with a Lyme-literate physician yesterday, an internist who specializes in treating patients with chronic complications from Lyme disease.  It was also my first doctor appointment in over three years, not including the ophthalmologist I saw about two and a half years ago.  I'm unhappy that it cost several hundred dollars just to talk to the doctor and get a basic exam without actually changing my situation any, but it's also a necessary part of the process, and I'm glad I got that step done even if it didn't accomplish much.

The appointment went well, and I was pleased at least that the doctor was nice, knowledgeable, and understanding.  The doctor I saw in New Jersey nearly four years ago just assumed I'd be fine after a short round of antibiotics, and the doctor I saw in Rockville about three years ago was a quack who told me the positive results on my Lyme test meant I would be fine.  This doctor actually listened to me, examined me, and offered a combination of empirical and alternative medicine options for both testing and treatment so that I'd have a range of options as well as a range of monetary investment.

After assessing all my symptoms and medical history, based both on my verbal account and the records I was able to get from New Jersey, the doctor is clinically certain that I have babesiosis, one of numerous tick-borne illnesses that's a common Lyme coinfection.  An actual test is required to be certain and to have information to use for a treatment program, and unfortunately I can't yet afford to have those tests done.  The full battery of tests would be close to $1000, unless I go with the cheaper alternative-medicine option, and there's a substantial chance these things wouldn't be covered by insurance even if I had it.  There are some tests that insurance should cover if I can get it, but not the full battery, and those tests aren't quite as reliable, having a higher probability of false negatives and the like.  The good news is that it would only be an additional $25 to go back and have my blood drawn, so long as I can get the money to cover the tests.

I think one of the tests the doctor did was for fibromyalgia, prodding various areas of my body to see if it hurts.  While I have general pain and malaise everywhere at all times, I don't have the kind of sharp muscle pain associated with fibromyalgia when my muscles are so prodded.  I have minimal reaction to having my knees tapped, but that's actually an improvement over the complete nonreaction I had a few years ago.  The more interesting part of the exam was attempting to do an imaginary tightrope walk across the room, placing heal to toe and trying to balance.  I wobbled across in one direction, balancing against the wall briefly at one point.  When I turned around the doctor instructed me to close my eyes and do the same thing in the other direction, and I couldn't do it.  I was so dizzy and disoriented with my eyes closed that I couldn't take the first step without falling over.  According to the doctor this demonstrates how strongly my central nervous system has been affected, and I now know at least one of the reasons why I feel consistently overtaxed: apparently I've been using senses like sight and touch to orient myself in exchange for my near complete lack of natural equilibrium.

If I can manage to get the tests done to help create a treatment regimen, I still won't be able to afford treatment without some form of healthcare coverage.  The doctor estimated that treatment would probably cost around $1200 per month, which would have been well out of range for me even if I still had the salary I was making for a couple months before being laid off.  I can't express strongly enough how much I wish we had some form of proper universal healthcare so that there wouldn't be such a great distance between myself and good health.  There are some options I could pursue, but largely they involve work, which is not something I can properly handle without good health.  I'm going to give it a shot, I just don't have a lot of hope for my ability to manage.


( 5 comments — Leave a comment )
Nov. 19th, 2008 01:47 am (UTC)
yippie! glad for doctor visit and happy that went well for the first go :-) *hugs*
Nov. 19th, 2008 02:30 am (UTC)
::huggle:: Danko. Hope something good can come from this, just don't have very much hope. If the temp. agency thing works out, though, I may be able to get some sort of benefits that may be at least somewhat helpful, and if not, just will have to at least try and acquire enough money for the cheaper alternative-medicine options to at least have something.
Nov. 19th, 2008 02:55 am (UTC)

If you like, please go to change.gov and post what you just wrote there. Obama needs to hear this.
Dec. 9th, 2008 08:57 am (UTC)
This illustrates the appalling difference between the type of care available for those who have money, as opposed to the type of care available for those who don't. Unfortunately the Rockville doctor was not atypical in the managed care system for lower-income people. He is great for something like, say, bronchitis. However, for something like babesiosis, he is worse than useless - possibly dangerous.

At least he was willing to prescribe antibiotics (after you argued with him for a while). However, for Babesiosis, you would also need an anti-malarial drug as well - which costs $1400 per bottle. Doctors are not permitted to test for Lyme disease and related illnesses in their own offices, even if they are fully capable. As you probably already found out, they are required by law to send all testing to a central lab in order to make everyone conform to the same standards. Also, a doctor can't just treat lyme or babesiosis based on symptoms, or they risk censure. The best a specialist can do is to order the tests, unfortunately.

This is appalling to me. One of the hallmarks of a good healer is to be able to recognize a combination of symptoms and to be proficient at testing for a suspected illness and to quickly prescribe a remedy. Most good doctors can do this without a problem, but for some reason, in the case of lyme and related illnesses, they're not allowed to do this. In Europe, this is unheard of. Here, dogs get tested and treated all the time, and vets recognize that there is a serious problem. I found this out at the vet's office when I took my cat in for skin problems a couple of weeks ago. Yet people here are refused the treatment they need - unless they have insurance that is willing to pay for the exorbitant centralized testing costs.

kitten_goddess's suggestion is good for a start. Although state and local governments have more to do with what kind of benefits you can get, I think the testing laws are at the national level. I think these laws were put into place because insurance companies were anticipating a very costly epidemic, and the government has favored insurance companies. Whether or not Obama will actually change this remains to be seen. I hope so. Meanwhile, the local and state benefit system has been worse than useless in helping you. I am truly sorry that you have had no luck in getting the treatment and help you need. I hope you can find a way to do this.
Dec. 9th, 2008 05:41 pm (UTC)
Thank you. I am trying. mmsword is trying to help me find means of assistance, and he's pretty good at this kind of research. I'm going to keep trying every angle I can, since it's clear to me that I can no longer survive on dietary changes alone. Hopefully some solution will come along; it has to.
( 5 comments — Leave a comment )


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