Anyone have an tips on disability for Lyme disease

April 4, 2010

Just wondering if anyone has any tips or information on navigating the

disability maze. We are dealing with an adult child suffering with Lyme, with no

health insurance or coverage.

He is a guitar player who had to quit playing and working survival

jobs(Barrista). He moved back in with us last Sept and has been working with a

Lyme MD in the bay area. He is on Doxy, Azithromycin, Tindamax, also doing has

been doing Cats Claw, Milk Thistle, Enzymes, three different probiotics,

gluten/dairy/sugar-free diet, and also did 5 weeks of Hyperbaric. He does saunas

regularly, and also epsom salt baths, massage, and meditation. He was tested by

Igenex back in July, and his MD put him at 90% certain for Lyme.

He has extreme pain and weakness in his arms and wrists, also pain in his

ankles, and has pretty much experienced every symptom that shows up on the Lyme

radar screen. He also saw a Rheumatologist who diagnosed him with Reynaud's

Syndrome which is what got me on the trail of Lyme in the first place. He saw a

hand therapy specialist in SF who was clueless.

We know he was bitten by a tick when he was 12 or 13. We pulled it off him after

a camping trip in NH, and the tick could have been on him for up to a week. The

tick was tested and supposedly cleared, but that was in the 90's in Maine, so I

don't have a lot of confidence in the testing, knowing what I know now. He also

lived at an old farmhouse outside of Knoxville that was probably crawling with

critters. This was when his symptoms started to become much worse.

The expense of all this is repressive, since all of this is out-of-pocket, and

he is so frustrated and depressed by his situation that I fear for his life. My

heart bleeds for him, and I don't know how much more we can do to help him,

except to continue to support him in any way we can.

I fear that the IDSA and CDC restrictions will foreclose on any assistance he

might get, even short term, and I am afraid that one false move under the

California Ponzi scheme will ruin his chances down the road, if he doesn't

improve.

If anyone out there has had any experience with getting disability coverage, the

information could be a life-saver.

Thanks,

Steve Cook

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