posted
spec scan came back positive for lyme my doc says....what is next treatment? was diagnosed with als 2003.docs stated they didn't know what to call it but said the only thing it could be was als.emg inconclusive...symptoms 1st started with left leg dragging,especially in the cold in pa.did not think of lyme until 2004 when i told someone that i had a red rash all over the back of my body=just like the pictures shown on lyme sites.symptoms continue to get worse:loss of fine motor skills in left hand/arm;balance problems-must now use a walker to get around;legs feel like they are there but don't move easily.loss of muscle mass/weakness n left arm and legs.i see dr bur..in west chester-he thinks i had lyme all along.dna and igenex tests come back inconclusive, or equivocal...was on flagyl,cipro and biaxin in dec. and felt like i had mono-was so sick.am on doxi,biaxin and flagel this month.dr.b wants to have a spec scan and put me on 3-4 months of iv as he states we must go at this aggresively.my insurance won't pay for 4 months of iv..i am told not to give up,but i worry that the lyme may be too far gone to allow me to walk normally again or live.any thoughts,please..
Posts: 24 | From pa | Registered: Oct 2005
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Don't give into what your insurance says without a fight. Do a search on "Insurance Appeals" and find my post which should be in General Support.
My insurance initially denied my picc line and IV meds, but they ended up paying for all 6 1/2 months because I kept writing letters.
7 out of 10 people give up and give in when the insurance says "we won't pay." That's what they are counting on.
If your doctor thinks you need IV, then try it. Good luck...God speed....Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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bettyg
Unregistered
posted
Miker, going to break this up into SHORT paragraphs and DOUBLE space in between. Those of us with neuro lyme, can't read/compehend. Please do this in the future...thanks Miker!
quote:Originally posted by miker: spec scan came back positive for lyme my doc says....what is next treatment?
was diagnosed with als 2003. docs stated they didn't know what to call it but said the only thing it could be was als.
emg inconclusive...symptoms 1st started with left leg dragging, especially in the cold in pa.
did not think of lyme until 2004 when i told someone that i had a red rash all over the back of my body = just like the pictures shown on lyme sites.
symptoms continue to get worse:
loss of fine motor skills in left hand/arm; balance problems - must now use a walker to get around; legs feel like they are there but don't move easily. loss of muscle mass/weakness n left arm and legs.
i see dr bur..in west chester-he thinks i had lyme all along.
dna and igenex tests come back inconclusive, or equivocal...
was on flagyl,cipro and biaxin in dec. and felt like i had mono - was so sick.
am on doxi, biaxin and flagel this month.
dr.b wants to have a spec scan and put me on 3-4 months of iv as he states we must go at this aggresively.
my insurance won't pay for 4 months of iv..i am told not to give up, but i worry that the lyme may be too far gone to allow me to walk normally again or live. any thoughts, please.
posted
miker, how long have you been ill?
Posts: 449 | From Pasadena, CA, usa | Registered: Aug 2005
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Geez, Miker. You've got some fight. Sounds like you have also got some great doc!!!
One thing is, I don't think a SPECT scan is really diagnostic for Lyme, per se. I think it can be diagnostic for a lot of things. It just indicates poor perfusion throughout various regions of your brain. Granted, that IS typical in Lyme, but your insurance will likely argue other conditions could cause it, i.e., vasculitis, toxins, Huntingtons, blah blah, blah.
You will need to -- with your doctors help -- mount a really good appeal.
Pointing out that Lyme is a CLINICAL diagnosis and you've been CLINICALLY DIAGNOSED. And that your SPECT scan confirms that clinical diagnosis; so does your herxing on prior abx.
Fight them, like Timaca says! The Lyme Times Insurance issues has some good forms to use. Don't give up.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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