Tuesday, July 8, 2008

The Marathon

I just spoke with my doctor. This is all so long and expensive. I felt a bit discouraged while talking to him. He sounded a bit discouraged. So it's kind of back to the drawing board. I do have lyme but it might not be the primary driving force. He said one of the reasons doctor's don't like treating these illnesses is because there isn't good clearcut testing that points to clearcut treatment.

He's going to order more tests. I'll also start supplements for a methylation protocol. I've done a tiny bit of reading about it and it' pretty complicated especially for a cognitively impaired brain. I'll continue to treat the babesia. He thinks the babesia might be one of the problems so I'll have to pay $195 out of pocket for that test.

We'll add the antibiotic Omnicef to the mix. It's one of the antibiotics used to treat lyme. He wanted to add Mepron which is an anti-malarial drug to treat the babesia but most times insurance won't pay for it and it costs $800 per month. So I'll stick with the A-Bab Herbs in the meantime. The test for babesia, if positive, will make an arguement for the insurance company to pay for the Mepron.

It's crazy. What an eye opener. I'm too sick to work-housebound-and yet have to pay out of pocket to get treatment even though I have insurance. And on the other side is all the work that goes into trying to prove that I need SSDI. It's fucking crazy.

I feel like crying. I was hoping for a straight shot in regards to treatment but one thing that is consistant about all this is how insconsistant it is. On my good days I understand and accept it. On the tougher days I get tired of being thrown for a loop. It's just the nature of this illness. The medical system is not set up to treat this. In fact it's set up to decline treatment in order to save money. I could go on a political pundit rant but won't.

I shouldn't still feel this fatigued. I should be having more improvement by now, at least according to the doctor.

I asked him at the end of our conversation if he still thought I might have improvement. He said he believes I will have a lot of improvement. I won't ever be the same but I will have improvement.

Why do I feel so discouraged and let down?

I think he's also testing for lupus and rheumatoid arthritis as well as systemic inflammation. I just hope insurance pays for everything. Between the phone appointment, herbs, probiotics, Argentyn 23, and the Igenex test the cost is over $500. And it's still not a cure nor even close! It's just a guess at what might be going on!

He used the exact metaphor that I thought of as I was walking back from the post office, that the engine in my body isn't quite firing up like it should or something like that.

I so wish I would have gotten proper treatment when all this started.

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