Before I was diagnosed with Lyme, had a specialist (who saw me for 20 mins) diagnos me with cerebral lupus and supported my claim of being disabled, which got me on long term disability.
I felt his diagnosis didn't fit, so I went on my own, made the match to lyme, found a llmd that confirmed this (also tested positive for Rocky Mt Spotted fever and Bart.)
My GP dismisses these and wants me to see specialist Duck who diagnosed lupus. If I don't see duck and take his treatment (predisone), neither will continue to support LT disability.
I can see duck, argue my case get the presciption and not use it. What am I risking by doing this verses writing to LTD company and explaining current lyme treatment?
Posted by Corgilla (Member # 4066) on :
Hi,
Touchy subject.
All I can say is in the US it would be a faceoff between insurance fraud and your health. Don't know how it works in BC.
Maybe the duck would be willing to see your point of view?
Good Luck,
Corgilla
Posted by SForsgren (Member # 7686) on :
If you really feel confident the Lupus is not the correct diagnosis (and maybe even if you are not sure), I would personally not take the Prednisone. Getting LTD is hard for Lyme in general even without the other complicating factors.
Posted by SForsgren (Member # 7686) on :
Another option would be to go down the path of getting an official Lyme diagnosis from an LLMD and dealing with the issues of LTD for Lyme (which are many from what I have read) and forget about the Lupus "duck".
Posted by brighty (Member # 6808) on :
I'm going to try answering my own question (lyme brain in action) If asked by the Long term disability - I am agressively following a treatment for lyme as perscribed by my LLMD and especially for the Rocky Mt. Spotted fever which can be fatal. My cognitive functions are scary - I can't remember my name some days, can't count money and get lost in grocery stores.. Have found some success with Mepron/zitho which suggests babesia. When the treatment for all coinfections/lyme is successful, then I will follow up with the specialist duck.
Posted by vitch (Member # 8094) on :
Write all you disabiling symptoms down, so you'll remember them. Add to the list as they occur to you. Try to get a SPECT or MRI or any other test that supports your Lyme disability diagnosis.
Posted by luvs2ride (Member # 8090) on :
One more suggestion. Keep seeing lupus duck but don't follow his advice. Cheap way to retain your LTD.
Posted by burnbitter (Member # 7088) on :
quote:Originally posted by luvs2ride: One more suggestion. Keep seeing lupus duck but don't follow his advice. Cheap way to retain your LTD.
Yes true. Also you can get disability for cfs, fibromyalgia, and chronic pain...rahter than the label of lyme, which we all have though none of those labels mean anything. incidently medicare won't pay squat once you do finally get it, and disibility certainly won't give you much extra to pay for speicalist, but better than being homeless if that's your alternative. just don't go in thinking you'll be getting medicare that will help pay for adequate healthcare.
Posted by WildCondor (Member # 434) on :
If i were you I would NOT take the Prednisone. BIG BIG BIG MISTAKE!!!!!!!!!!!! I would get to a real LLMD and get a real Lyme diagnosis, if that is what you have, and proceed from there. Lupus=disabilty also, so you could just go along with the duck and DONT TAKE the steroids and get on disability. Make sure you know what you have, and do everything you can to get a correct diagnosis and get the right treatment. ACT NOW!
Posted by Susan in G'ville (Member # 8185) on :
I second the comments by W Condor. I've read that steroids are a big mistake w/LD, that make your situation even worse. Prednisone will eventually depress your body's ability to deal w/joint pain. Then, if you've been on it a good while and stop taking it, you have to slowly wean off or you'll get hit w/ a LOT of pain that your body can't deal with. This happened to my Mamma.
Sounds like you've got tough decisions to make. I wish you strength thru it all.