posted
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?
-------------------- Diagnosed 11/29/10 10 bands reactive IGG 3 bands reactive IGM Posts: 46 | From Mass | Registered: Dec 2010
| IP: Logged |
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.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
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.
Posts: 3771 | From around | Registered: Mar 2008
| IP: Logged |
posted
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.
-------------------- "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." Anonymous Posts: 450 | From California | Registered: Feb 2008
| IP: Logged |
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.
posted
I am so sad right now. As soon as I hit add reply my phone rang...
INSURANCE IS STILL DENYING ME
-------------------- Diagnosed 11/29/10 10 bands reactive IGG 3 bands reactive IGM Posts: 46 | From Mass | Registered: Dec 2010
| IP: Logged |
Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
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.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
| IP: Logged |
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
-------------------- Me - Igenex: IgM: 41IND, IgG: 39IND, 41+ but Plasmid PCR Positive Kiddo - after 1 year IV - positive Lyme culture (before IV: IgM:31,34,41,83-93 IND; IgG: 41+++, 66+) Posts: 133 | From CT | Registered: Feb 2011
| IP: Logged |
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
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.
Posts: 3771 | From around | Registered: Mar 2008
| IP: Logged |
posted
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
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
| IP: Logged |
posted
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?
-------------------- Diagnosed 11/29/10 10 bands reactive IGG 3 bands reactive IGM Posts: 46 | From Mass | Registered: Dec 2010
| IP: Logged |
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
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
| IP: Logged |
posted
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?
-------------------- Diagnosed 11/29/10 10 bands reactive IGG 3 bands reactive IGM Posts: 46 | From Mass | Registered: Dec 2010
| IP: Logged |
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/
Topic Closed
![[rant]](graemlins/rant.gif)
![[Smile]](smile.gif)
![[Frown]](frown.gif)
Printer-friendly view of this topic