Topic: Heading to see LLMD for the first time in>>>
GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Kam-I wish we lived in the Same country.
You could stay in my spare room to help you.
IV abx will make all the difference to your brain pain. It did for mine.
Praying for you.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
| IP: Logged |
kam
Honored Contributor (10K+ posts)
Member # 3410
posted
OK. My brain can't take all that the email I got answered back so will break it down.
$450 for new patient fee
If I have had a postiive western blot then she will not need to do the testign on that.
I had a postiive western blot in 2002.
Co infection test is $875. I never did have that as I could not afford it.
She said that medicare will cover it...but I am assuming I also need to come up with my share of the cost.
ispot test $442 which tell where i am with my infection
A port which is done at the hospital near her office and is usually covered by medicare....again guessing i will also have a bill for this for my part
IV treatment for a week at her office $1,000 to $2,000 a week
Then she can write home health care for me so I can go home for the rest of the treatments.
Thinking this means I need a place to stay for a week near her office also as I know my health coulnd't handle going back and forth 3 or 4 hours a day.
Total out of pocket could be $1500 to $3,000
Nutritionals would be $750 for the week I am at the office.
So, I am a bit confused. Looks like I would need $3,000 as I am assuming I will need the nutritional iv's also.
And a place to stay for a week..I could set up camp this time of the year and mmost likely be OK...if I found a quiet campground
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
| IP: Logged |
kam
Honored Contributor (10K+ posts)
Member # 3410
posted
I also would need someone to drive me down the hill and drive me back.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
| IP: Logged |
posted
Thanks for spelling it out here what's needed -
Couple comments - Medicare covers testing, www.lymetap.com covers 75% of IGeneX testing costs for anyone who qualifies as low income, which you do.
If you had a positive Western Blot, I don't see why you need to test for Lyme again.
Doesn't Medicare usually cover IV for a certain period of time? This needs checking on.
Posts: 13116 | From San Francisco | Registered: May 2006
| IP: Logged |
kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Tutu..yes I know it will cost more and it is only a start
Robin...she said that if I tested postive for lyme I did not need to get another test.
The other tests are for co infections possibly if she thinks I need them.
I need the documentation in order to get Long Term Care which would allow me more caregiver hours and provide medicaid as a secondary insurance if approved.
Yes. I tried to get approval for lymetap awhile back. My primary doctor even wrote out a form for which tests.
I need to follow thru on this. This might be what I need to help me get long term care and I could just go thru the primary doc.
She was not able to get long term care for me as I think documentation was weak...she just can't say because i need it.
She has to have documentation to prove I need it.
Yes. The person I correspondended with said medicare would cover some of the IV...I just don't know what my part of it would be.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
| IP: Logged |
kam
Honored Contributor (10K+ posts)
Member # 3410
posted
OK brain is getting too confused so I'll have to figure out what the next step is later.
I am thinking maybe see about gettinghe forms for lymetap and getting them filled in and sent in.
I can go thru my primary care for that.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
| IP: Logged |
kam
Honored Contributor (10K+ posts)
Member # 3410
posted
tutu..no the info i got was for one week and then she woudl have a home health nurse come
she wants me to be near the office for a week to see how i respond to the IV the first week
they know each person is different and each case takes different amt of time
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
| IP: Logged |
kam
Honored Contributor (10K+ posts)
Member # 3410
posted
greta..i don't think i would be a very good house guest.
I have times when I need to open the windows when it is snowing out as I am so overheated
But, I do think we need a place for those of us with lyme to all be together to hep each other..there was an abandoned boys ranch I use to go to when my health was doing better.
I thought it would be a very good place...some were dorm like seettings..some were 3 bedroom houses, individual cabins for one, etc
chow hall for those who could get to the chow hall
food come be brought to those who couldn't, etc etc etc
could have chickens and goat's and horses and those doing well enough could take care of live stock
property was backed up to national forest and tral heads for hiking and riding a horse.
could have a full time nurse on the property and a lyme sepcialist come every 3 months
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
| IP: Logged |
kam
Honored Contributor (10K+ posts)
Member # 3410
posted
but it would be great to met you some day greta and tutu and robin and many others on this site
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
| IP: Logged |
kam
Honored Contributor (10K+ posts)
Member # 3410
posted
OK able to print out lyme tap application. I see that it needs a physicians signature at the end of the form.
I am thinking the next step is to at least get down the hill to see the LLMD and figure out how much I need to get down the hill
And get someone to drive me there and back
$450 for the office visit...need to read the email again or the above to see what else might be needed on the first visit
testing for co infections but if I bring the lyme tap form that should help
$60 for gas
Health to be strong enough to get down the hill..not there yet..still recovering
$450 for ispot test
I could read the app and get it to my primary care doc to sign and send in for testing via mail
The port and iv and one week at her office and nutritional stuff for that week could come later...after I know if I can get long term care or have a supplemental plan next year
not sure where she does the co infection testing
i know the primary was going thru igenex i think...yes...because i recall being surprised she knew enough to go thru igenex
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
| IP: Logged |
kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Health is too low to even think about plan b right now.
but don't want to drop it as i di dthe last 8 years so want to keep this thread active
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
| IP: Logged |
kam
Honored Contributor (10K+ posts)
Member # 3410
posted
OK. Able to open a couple of envelopes I got from real people.
One had a money order for $200 in memory of David Korn, MD.....I was in communication with him via FB and was hoping to raise the funds to see him .....
..then he died. Later learned he had lyme disease himself. Sorry I wasn't able to meet him in person.
So, I now have $200 towards the funds needed to see the new LLMD in AZ.
I also was able to print out the forms for lyme tap. Wtg until health is doign well enough to fill them in and get them in the mail.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
| IP: Logged |
posted
Someone is willing to put another $100 towards your seeing the LLMD, so that will make $300 total so far. I'm pming you.
Posts: 13116 | From San Francisco | Registered: May 2006
| IP: Logged |
kam
Honored Contributor (10K+ posts)
Member # 3410
posted
This is good.
I sent an email to the doctor's office to let them know I was planning on apply for lyme tap for some of the testing and to see which lab they used.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
| IP: Logged |
kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Tried to look inot a web site called ehealth but it was too much for me.
I know they fhave people you can call for help but that is too much for my brain to handle too.
My thinking is if I can get in to see this LLMD and she can come up with the testing to document that I do need long term care....
then I will not need to deal with seupplemental insruance but will get medicaid to go along with medicare and more caregiver hours.
Typing this with eyes closed.
I have applied for Long Term care in the past but have yet to be approved. They said my medical scores were too low.
Or medical points.
But, I am lower functioning than the others int he apartment complex I live in that have gotten approval.
My guess is the doctor's need more documentation than she is just low fucntioning due to lyme dise disease.
So need to get to the LLMD before the end of the year.
In the meantime will continue to do what I can when I can to see which supplemental plan would work for me.
A friend is going to help me out when both of us are doing well enough she can help.
She will send me the question typed out and then I will answer it as she searches for which plan is best.
Or I could try the relay system I have on the computer but have yet to use it as the brain usually doesn't work well enough.
Not even sure what my codes are any more. Or my number. That would be the first step.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
| IP: Logged |
kam
Honored Contributor (10K+ posts)
Member # 3410
posted
update: not able to read what I wrote previously.
A friend is helping me via email figure out what I can do for a supplemental plan to the medicare plan.
I have learned that AZ doesn't allow supplemental plans if you are under 65.
But, there is something called an advantage plan.
I am not sure what the advantage is. I do know it is much less than a supplemental plan and usually includes a prescription plan.
So focus has been trying to sign up for medicare advantage and figure out which doctor to have for a primary doctor that is local.
This am vision is not working well enough to do anything about it but hoping health is doing weell enough sooon to get signed up.
Then, do I wait until the first of the year to see the lLMD or do I go aahead and work at setting up a go fund me page or something like that to see her this year.
I am thinking it is a good idea to see her this year as most of the things will be out of pocket expense anyway.
Then, I will know if I can afford to get the treatment and port and if medicare will cover most of it.
Hoping I am making sense. I am confusing myself.
But, just don't want to drop this and go antoher ? amt of years without having a LLMD
I thought I would have gotten the forms from the LLMD by now but they have yet to come in the mail.
When able, I will read past posts and see if I posted when I sent email to LLMD's office and they said they were going to send me the forms.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
| IP: Logged |
kam
Honored Contributor (10K+ posts)
Member # 3410
posted
I still hav enot been able to fill in paper work for the lymetap....that is something i need to wait until brain is doing well enough.
Not even sure where paper work is now..hope it is an easy find and I am able to fill it out soon.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
| IP: Logged |
steve1906
Frequent Contributor (1K+ posts)
Member # 16206
posted
Hi Kam, Here's the 2015 Medicare Advantage Plans in Arizona.
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Smile]](smile.gif)
Printer-friendly view of this topic