scha Medical Update: Getting Mad and Getting Even

[Guest guest]

Who says you can't do both?

I posted about some personal setbacks last week, wanted to bring you

up to date.

1) I formally initiated an appeal of the adminstrative status

decision by phone Monday. I spoke for nearly an hour with one of two

officials who signed the denial letter, and she couldn't even

explain the decision, let alone defend it.

Yesterday I wrote a blistering, 7 page appeal letter. My sister

drafted a more measured, concise 3 page version. She is working on

incorporating the best elements of both into a letter that will be

faxed to the local Medicaid HMO's offices tomorrow.

Having to do this is of course very frustrating, but in the process

of clarifying the issues we are also forcing my Medicaid HMO onto

new terrain, where Lyme disease is concerned. Even if I lose, the

effort is worthwhile.

We are including briefs on recent court decisions citing the right

of Lyme patients to sue when their treatment is delayed. One such

lawsuit in another state ended with the jury awarding several

million dollars in damages. The patient in that lawsuit appears to

have been in better shape than I am.

Thanks to those who suggested getting an a non-Lyme diagnosis, and

reapplying on those terms. First, I want to fight the good fight one

more time as a Lyme patient, but I will be trying to clarify what

alternate diagnoses may apply with the new neurologist I see this

coming Thursday.

2) I was successful in getting the neurologist's office to seek my

brain MRI and neuropsychiatric evaluation from UCSF. They called me

yesterday to announce that they've been promised both items will be

in their possession before my appointment Thursday morning.

3) On Monday I faxed an urgent plea for help to my LLMD's office,

and called the Office Manager there to make sure she got the letter

to my LLMD. I mentioned all three problems, but emphasized the pain

specialist seeming to back out of agreeing to see me.

My LLMD phoned the pain specialist, and it must have worked. His

office called me today to schedule an appointment for next Monday,

explaining they had heard from my LLMD, and also obtained the

original radiology reports from my lumbar and cervical MRIs (very

grizzly, should help them to grasp the reality / severity of my

pain).

4) I've had to stop the Diflucan a second time. I am not convinced

the adverse response I'm having is herx, but whatever it is I can't

cope with it while I'm trying to manage all this stuff.

5) It's very, very tricky these days to speculate about cause and

effect. I started Testosterone at the beginning of March, and IM

Bicillin exactly one month ago. What's clear is that my symptoms are

becoming a good deal more variable. The bad days are worse than

anything I've experienced to date, but the good days are sometimes

surprisingly good.

6) Tomorrow I hope to hire a local driver to help me get to doctor

appointments. My friend Bob is in danger of exhausting his vacation

days driving me to these things, so this is long overdue.

7) Why am I posting this at 3am? Unfortunately, something's causing

the pain in my neck to spike. I was falling asleep sitting up, went

to bed early, and woke up with spasms at 11, midnight, and a little

after 1am. *Sighs* Otherwise, I've been bearing up under the stress

pretty well.

This scha Medical Update has been brought to you by:

Spite Cola. All the sugar and twice the caffeine. Have a cold,

refreshing glass of Spite today. You deserve it - and so do they.

Thank you for listening. This is Agent Scha, reporting. Over and out.