I was misdiagnosed for 18 months. Finally had a western blot in Nov 2010 came back with 10 IGG bands reactive and 3 IGM bands reactive.
I did 2 months doxy and over 30 days of IV ceftriaxone. My doctor put in for an extension of IV infusion and insurance has just denied the extension.
They said it is not medically neccessary. That I do not meet he criteria!
I now have 8 or 9 positive western blots because doctors just like to keep testing me. thinking my blood may have been mixed at the lab.
I have 2 coinfections bartonella and rickettsia.
I have the CDC calling me and telling me I am positive for other things that I know I am not. Because they are false positives... Confirmed by my doctor.
I also have had heart disease my whole life. I had surgery on my AV node in 1996. I am going for more tests this week to make sure lyme has not damaged my heart more than it already is.
HOW DOES THIS NOT MEET CRITERIA?
Frustrated and need some direction. I have already contacted my district senator and they did say they will help in getting this appealed for me. My doctor also submitted an appeal.
Any other suggestions?
Posted by Lymetoo (Member # 743) on :
I found that in the quick links above... there may be more info there that is helpful.
Keep fighting because I think you have a very strong case.
Posted by Rumigirl (Member # 15091) on :
Keep appealing it with help from your dr and senator, etc.
There is another not well-known way around this. And insurance co's don't want you to know this, and won't tell you. You can buy the rocephin (or whatever rx) and supplies out of pocket, say from Infuserve America, where it is relatively cheap. Then, you have Infuserve bill your insurance co under major medical.
Usually the insurance co will pay. You may well have to get after them to acknowledge the claim, and to process it correctly. But after a couple of months (less if you are lucky), they will usually pay.
This isn't a guarantee, but it often works. You know why, I think? Because if they denied this way too, they'd be liable if you sued them!
Get the insurance issue of Lyme Times from CALDA. It is worth it's weight in gold. It will help with the appeal process.
Posted by 4Seasons (Member # 14601) on :
Infuserve America is the cheap source of IV abx that I know of, and they will get as much money from your insurance company as possible.
I've been so impressed with all the compassionate people who work there.
If you have the energy to appeal with the insurance company, definitely try, but with the IDSA guidelines to back them, I have not had much luck.
Posted by Lymetoo (Member # 743) on :
up for keepsmiling
Posted by RESOLVED. (Member # 24991) on :
That is just disgusting. So sorry for you, I will pray for you today.
Posted by keepsmiling2010 (Member # 29789) on :
Thank you all for the support!
I am finding out today if the appeal went through or not. I am extremely anxious and scared.
My home nurse just left, she said her entire office knows my name and are pulling for me.
Also said that they have more lyme patients now then they EVER have. And I do meet the criteria more than some of the others getting iv infusions. And most of those patients have it indefinate.
I have spoken to 2 other state representatives. 1 of them is personally effected by this. His son has lyme.
There is a new bill being put forward in MA and hopefully approved. They want to open a research facility to prove that long term treatment is necessary to cure lyme.
They are going to share my story as well.
Here is the article I read which made me contact him.
The 2 senators offices I contacted are on my (our) side which we really need!
I have nothing left but HOPE.
Today is my last dose of rocephin
Please keep me in your thoughts that the insurance company will change their mind...
Posted by keepsmiling2010 (Member # 29789) on :
I am so sad right now. As soon as I hit add reply my phone rang...
INSURANCE IS STILL DENYING ME Posted by Dekrator48 (Member # 18239) on :
You can also file a complaint with your state's Insurance Commission.
I did this online regarding the extreme rate increase I received.
I got a quick response, to my surprise, and received a rate decrease in one month.
I was assigned an investigator and have received 2 letters from them so far.
Posted by keepsmiling2010 (Member # 29789) on :
@Dekrator48 thank you! I just filed a complaint along with 1 to the attorney general and better business bureau.
Posted by racer (Member # 30438) on :
Hi keepsmiling2010,
I've just been reading about how to file insurance appeals and get independent review in Massachusetts. Is that the process you used?
My child's IV rocephin was denied after 30 days by UHC. I have not appealed yet, since we were just denied this week.
We can't afford this for long, since I will have to go on IV soon too.
racer
Posted by Rumigirl (Member # 15091) on :
Another important thing, you said:
I have the CDC calling me and telling me I am positive for other things that I know I am not. Because they are false positives... Confirmed by my doctor.
Uh, if you tested positive for these infections, and the CDC is telling you that you have them, you have them! It doesn't sound like you have a Lyme Literate dr! Or at least not one who is up on all the co-infections.
This is a big deal. You need someone who takes it all seriously, and who knows how to treat them all.
And don't give up on keeping on with your IV treatment; you don't want to lose whatever gains you made.
Posted by seibertneurolyme (Member # 6416) on :
I am very curious as to what infections you think are false positives and how your doc proved that. If you are producing antibodies (which it sounds like you are fortunately) then I am highly skeptical that the tests were actually false positives.
What labs were used and what were the test results? This is very very important. Different infections require different treatments and you will not get well unless all known infections are treated.
It is possible that IV's for one of the other infections might be covered by insurance if they will not cover the lyme treatment.
BCBS has told hubby that that insurance company considers babesia to be a life threatening infection for example.
You need to request copies of all paperwork involved in the claims denial process and be sure to also request the guidelines for lyme treatment and also for each of the known infections. They probably will not want to provide the treatment guidelines but I am pretty sure they are required to do this by law if they denied your claims.
Good luck and don't give up fighting for treatment.
Bea Seibert
Posted by keepsmiling2010 (Member # 29789) on :
The CDC called to confirm lyme and I don't even want to say it the "s" word
The lab that did them was within the hospital. I guess there are 4 parts of the test they do and the final is the confirmation that you indeed have it and mine comes back negative.
They also found bartonella and rickettsia bacteria.
I was on doxy for 2 months before being put on the iv rocephin. I did 5 weeks of the rocephin. I still have the line, did my last dose yesterday.
I am looking into keeping my line and buying it on my own. My doctor is not in today so I hope on Monday she will say yes you can do that.
I guess my question is can she tell me no that my line has to be pulled? What do I do then?
Posted by keepsmiling2010 (Member # 29789) on :
@racer I have filed complaints with the insurance commisioners office, attorney general, better business bureau and the insurance company.
I spoke with 2 state representatives, and mailed letters to 2 senators.
BCBS has denied me 2 times in the past week. Saying I do not meet criteria!
Also said 30 days of treatment is by the guidelines and additional treatment is not medically necessary...
They required 2 positive tests for me to even qualify for the 30 iv treatment. I have about 5 positive western blots and ELISA's from different labs.
My fight is I am still symptomatic and also have heart disease. I am waiting for my echo results. Hope to have them Monday.
I think my next step is the news stations.
Posted by seibertneurolyme (Member # 6416) on :
Keepsmiling,
Don't know any details regarding your insurance policy. But this is what has worked for hubby. His insurance has a $5000 annual cap on prescriptions. They do not care what meds are prescribed. His doc writes the scrips as follows -- Rocephin or whatever IV antibiotic we are using, also IV tubing, IV bags and 10cc needles.
The antibiotic scrips we get filled at Rite Aid or whichever pharmacy has access to the correct meds. Hubby gets the insurance discount price and the insurance company pays the copay of 60% until he uses up the annual $5000 allowance. The scrip is processed just like any other scrip.
We get boxes of 100 needles thru the drugstore as well.
The IV tubing and IV bags we order mailorder from Medhaus. I mix all the IV's myself -- we have never had home health care. I also do bandage changes 1 or 2 times per week.
Hubby has had a PICC line for 7 years now. At first it was used for IV Ativan -- none of the seizure meds they tried worked.
Just because the doc wants the IV line pulled -- it would be up to you if you followed those orders. Of course if they want it pulled and you don't do that then most likely the doc will fire you as a patient -- some states require a 30 day notice before firing a patient.
Will your PCP take responsibility for the line? Your LLMD might be agreeable to that.
Currently our PCP is the one who actually writes the scrips for the IV meds although at different points in time it has been done by a couple of LLMD's as well.
One doc wanted hubby to have the nurse check his IV line weekly and change the bandage -- our PCP did that for a month and then said he didn't feel that was nexcessary -- we could just go back to doing that ourselves and let him know if there were any problems.
I honestly don't think you will get your insurance company to change their minds about the continued IV treatments. According to their guidelines it doesn't matter that you are still symptomatic.
But they might cover IV Rifampin or IV levaquin for the bartonella -- don't know the guidelines on that. If there is cardiac involvement you could argue that it is due to bartonella and maybe get those meds covered that way.
Bea Seibert
Posted by keepsmiling2010 (Member # 29789) on :
Just got off the phone with my doctor. 30 minutes of pretty much arguing.
She agreed to let me keep my picc for another 3 weeks and the nurse is calling Infuserve America.
I hope it goes through and can have a delivery of rocephin soon!
She also said that she still needs to treat me for the bartonella and spotted fever but won't do it until I am done with the iv.
Then said the "s" test did come back as a false positive but still wants to treat me for it...
I dont know how I feel about that.
Completely stressed out today!
Good news is I did go out to breakfast and shopping with my mother today Posted by keepsmiling2010 (Member # 29789) on :
OK just got off the phone again and pretty much an argument still.
Doctor said that my white blood count is still low. She is afraid of me getting an ifection and is going against her beliefs in me keeping this picc line.
What do I do? I know I have to find another doctor. But do I let them pull my line until I see a REAL LLMD?
Posted by Lymetoo (Member # 743) on :
How about we move this to Medical.. you need more help!!
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