As I've mentioned, my LLMD for the last 20 months referred me to Dr. R in NYC for more aggressive treatment/second opinion.
Dr. R feels I need IV abx after 20 months of orals, but today I got the call from the insurance company (BCBS) saying that since I had been on 1 month of orals, there is no need for IV. (Actually I've been on 20 months, so that's mute).
It goes on and on about how there is no proof I have lyme disease and that I've never even had a spinal tap to confirm it? A spinal tap?????? It had so much mis information, i just wanted to cry.
They said they will be sending me a copy of the letter in the mail. I really thought I was going to get the port and the insurance battle would start after the 28 days or whatever IDSA was saying, but I can't even get in the door to get the darn port installed to get started.
Do they purposely do this when they know we are too sick to fight? I just am so darn frustrated.
I understand I wait for the letter and start writing to combat everything they said, but since this stuff was so totally wrong from most anything we all know here, I don't even know how to start.
I have been reading about all the people with similar situations, so yes, I know I'm not alone. I guess I was naive and figured I could deal with the battle after I'd gotten the port and started treatment.
I'm confused, hurt, angry, bitter, and just so fed up with insurance companies practicing without a licence. Why go to a well known LLMD, pay out of pocket for this appointment, to be told that how they want to treat isn't going to hold weight with the all mighty insurance companies that think they are our doctors I guess.
Cathy
Posted by NanaDubo (Member # 14794) on :
Cathy, I'm so sorry to hear you are going through this. I can't even get my insurance to pay for bicillin.
It's terrible how they treat us and yes, maybe they do know we are too exhausted to fight sometimes, but if you can, do it.
Send them everything about Blumenthal and ISDA.
I emailed Lou Dobbs today and am hoping he will take up this cause.
Posted by lymebytes (Member # 11830) on :
Can you appeal their decision?
I am pretty sure I am up to bat next, I have been on orals 24 months and am likely going to need IV, I don't know if my insurance will cover it, I doubt it.
But I will appeal..and remind them that the CT Attorney's General Office has found the IDSA guidelines have found to be flawed if that is what they are basing their decision on, here is a link you could print and send: http://www.ct.gov/ag/cwp/view.asp?A=2795&Q=414284
The guidelines are sort of in a limbo state right now..so they should not be able to base their decision on the guidelines, in fact the guidelines were never meant for any insurance company to follow, as each case is unique.
Also, if they insist on going by the Idsa guidelines, I am fairly certian they state that if orals do not show improvmement within 30 days IV is indicated. It doesn't say no further treatment is necessary to my knowledge. Here are their guidelines, you may want to familiarize yourself for something that might actually help you: http://www.journals.uchicago.edu/doi/full/10.1086/508667#h32
Also, I am sure your LLMD has seen many denied, can he be of any help?
I am arming myself for the fight too...I hope you are able to get the treatment you need too.
I would also contact the LDA and ask for advice. They may be able to help you find a loophole in the guidelines.
I believe even their guidelines state that if a month of oral aren't helpful that a month of IV may be necessary - it is a starting point.
Don't give up - this is your life.
Posted by bettyg (Member # 6147) on :
cathy, so sorry to read this, but NOT surprised by bcbs! my pain in the butt!!
in my newbie package i sent you, look for TIMACA'S letter to insurance company where she was reimbursed back $50,000 plus !!!
i believe you have a current version and a TABLE OF CONTENTS ... SO LOOK FOR TIMACA'S NAME UNDER INSURANCE.
do a search, using EDIT, FIND, and type in TIMACA hit enter until you come to this valuable link for you!!! best wishes! Posted by tic chick (Member # 9156) on :
I just went thru the same thing with our insurance and had my husband do the calling, due to my inability to articulate clearly these days.
Is there someone who can help you with this fight? Between my LLMD, my husband and myself,we've recently managed to get approval for one month IV Rocephin. I am having the Picc line installed this week.
Prayers are answered, just not on our time.
Blessings, Tic
Posted by Kayasdad (Member # 15675) on :
We just got a denial ourselves. Any one have a good appeal letter template (That has proven effective)? We are swamped and any bit of advice will help.
Posted by tdtid (Member # 10276) on :
I know so many of us are going through these insurance battles at so many different levels. I guess I should be blessed that even though they wouldn't cover my doctor, they did pick up 20 months of orals.
I think they really hope if they give us a hard enough time, we will give up and go away. Guess we need to keep fighting, but this is such insanity.
Yes, Lymebytes, we are going to appeal this. Just wondering how long this gets drawn out. I know many have fought and won, so I'm not giving up.
Thanks for the suggestions and already working on getting all my ducks lined up in a row. Just would be easier if I wasn't so brain dead and hurting all over. Makes it hard to think straight.
Thanks again.
Cathy
Posted by JKMMC09 (Member # 15795) on :
I just wanted to wish you all the best of luck in your battles against both this disease and the insurance company. I (well, really my husband, it's "his" money) have paid out of pocket for over 1.5 years of IV Therapy for both me and my daughter--IV Rocephin, IV Vanco., IV Doxy, IV Levaquin, IV Zithro.--all at different times. We had to sell a beachhouse we own in FL. It has been a rough road, but our health is much improved. We did appeal the insurance decisions, but at the time we were just not savvy enough and just too overwhelmed with the severity of illness to continue, so we gave in. I hope you are all successful!
God bless!
Posted by stella marie (Member # 7216) on :
Sorry to hear you have to deal w/ this crapola Cathy.
You got some good advice here. Wishing you success in your efforts!
Posted by Larkspur (Member # 5131) on :
Cathy - Oh no! I too have to pay bicillin out of pocket but I know that is nothing compared to IV
you can ask a free question - I think they are even linked in the link section of Lymenet
Posted by Brent (Member # 12797) on :
Hi Cathy,
Too bad you have to go through this like so many of us. I am in the middle of an appeal right now with Independence Blue Cross in Philadelphia PA.
They denied IV ABX stating that "I had IV therapy last year for 28 days so I should be fine"
And I still test positive for Lyme!
My eyes are starting to be affected by this. I have bad floaters and a test shows thickening of my retinas.
It took 5 months to get them to approve a Spect scan. The Spect showed "focal perfusion in each cerebral hemisphere"
There should be no question about IV therapy for me!
I applaud the city Attorney of Los Angeles for launching an investigation into unfair business practices by insurance companies. This should happen nation wide!
We just have to keep fighting!!
Best of luck to you!!!
Brent
Posted by seibertneurolyme (Member # 6416) on :
I moved up 2 threads in the General support forum which have 2 really good letters you can use for examples to fight your insurance company denial.
Bea Seibert
Posted by njlymemom (Member # 15088) on :
good luck Cathy with this appeal
I understand what you are feeling right now
I was denied IV last fall/winter and did not appeal
I wanted to but could not write the letter
it sounds like you have a better support system than I had and I wish you the best here
i am so sorry that i did not fight this - but at the time i was just too ill
Posted by keltyl (Member # 14050) on :
This post couldn't have come at a better time. I am worried sick about starting treatment (aug 5th). I also have bc/bs, and I know they are going to give me grief.
I already feel guilty, since my hubby is getting close to retirement. This is going to really put a crunch in his retiring Mine too).
I'm also afraid I won't be able, at times, to work. I work partime.
Good luck to us all!!!
Linda
Posted by tdtid (Member # 10276) on :
Bea,
Thank you for the two letters you moved up. I did locate both of them and have forwarded them on to my husband since my brain is mush. THANK YOU.
It will give us something to work with since right now, all he does is fight them on the phone and it looks like it should be in writing to start getting results.
Abby, Thank you for the link. Will keep that handy as well. Think we should have enough to get a reasonable letter started.
Anyone know how long this tends to go on before they might give in if they are going to?
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