posted
so i'm on my 3rd week of iv rocephin, my pvc's are completely gone, and most of my numbess is gone, still not better, have severe heaviness in limbs and pain, but now I got a letter from the insurance saying that they need proof that I still have lymes. I did expect this because of all the research and people's stories, but my question is they want another positive western blot test, evidence of cardiac involvement, or evidence of neurological involvement, but how do I give them a positive test when I'm on all these antibiotics, should I have my llmd send a letter that I'm still having severe symptoms. Don't the insurance companies realize by now that by denying these, there actually spending much more money in the long run? I've already been in the hospital four times in the past year from this with good reason? If anyone can give me some info i would appreciate. thanks
Posts: 229 | From Forty Fort, PA | Registered: Feb 2012
| IP: Logged |
posted
the funny thing is too, I actually spoke directly w/my insurance company (aetna) and asked them if these iv's were approved and they told me your doctor ordered three months and they will be covered??? and the picc line was covered in full. Why would I get a picc line in to be approved for 3 wks of antibiotics?
Posts: 229 | From Forty Fort, PA | Registered: Feb 2012
| IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Go (call) first to the Attorney General's office in PA. They may be able to help. They must hear from people to be able to help you, and they have helped in the past!
On the "Help For You" link below, click on Insurance Issues. This has helped others. Hope it helps you!
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
You also want to mention in a LETTER that you do NOT follow the IDSA Lyme guidelines because they were determined to be flawed and biased, and the authors were found to be "riddled with conflicts of interest".
PLUS- they contain WAY outdated material- from before 2006 when they were published. Your insurer wouldn't force someone to follow old cancer guidelines, and old Lyme guidelines will not be allowed to prevail in your case.
Here is my favorite quote to use. It is in the CT Attorney General's findings about the IDSA after he did a lengthy investigation.
""The IDSA's 2006 Lyme disease guideline panel undercut its credibility by allowing individuals with financial interests -- in drug companies, Lyme disease diagnostic tests, patents and consulting arrangements with insurance companies -- to exclude divergent medical evidence and opinion."
"I must very strongly emphasize that all diagnoses of tick-borne infections remains a clinical one."
In Lyme Borreliosis, western blot is the preferred serologic test. Antigen detection tests (antigen capture and PCR), although insensitive, are very specific and are especially helpful in evaluating the seronegative patient and those still ill or relapsing after therapy.
Often, these antigen detection tests are the only positive markers of Bb infection, as seronegativity has been reported to occur in as many as 30% to 50% of cases. Nevertheless, active LB can be present even if all of these tests are non-reactive! Clinical diagnosis is therefore required.
Page 4 An unfortunate corollary is that serologic tests can become less sensitive as the infections progress, obviously because of the decreased immune response upon which these tests are based. In addition, immune complexes form, trapping Bb antibodies.
poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
Anyone who believes the spoken commitment of an insurance company is asking for trouble. Always get this kind of approval in writing. Even then those guys can change their minds anytime they want to. They write the rules. The only recourse we have is to go to state authorities after going thru whatever appeals process is required.
Home health care is the most expensive route to get IV. You can purchase the meds and supplies in other ways, if insurance won't pay. Your support groups in the area will have advice on this more than likely.
Posts: 2888 | From USA | Registered: Mar 2004
| IP: Logged |
posted
tincup, thank you very much, I never knew about contacting the attorny general, just went to the website, great info. don't know if it will come to that yet, but i really need to stay one step ahead in all this. thanks.
Posts: 229 | From Forty Fort, PA | Registered: Feb 2012
| IP: Logged |
posted
To be honest, I would expect for your insurance company to stop paying. Its been a very common exerpirence here and in general-- they're a business and if there is any way they don't have to pay, then they won't. its totally messed up-- i know.
I'm not telling you not to fight it-- but I'd look into other options just so you aren't caught off guard it this is no longer covered. :-(
Posts: 844 | From CA | Registered: Apr 2010
| IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
There you are!
Just searched all over trying to find your post, and obviously I finally did!
Someone kindly shared this link with me just now and I thought of your situation immediately.
It is indicating the Lyme tests your insurer wants to see positive are used in the SURVEILLANCE definition- and it specifically states that is NOT to be used in clinical practice.
AND it states those specific symptoms they want to see documented fall in the same category as the positive test they want, the SURVEILLANCE criteria.
Glad the other info helped- or at least you read it. BUT, please don't delay contacting the AG, even if you are in the early phases.
It can take them time to get to your case, so the sooner the better! You may also have a specified time in which to appeal, so PLEASE don't let that slip past you.
posted
yes thanks everyone, and yes whitneys,I know what your saying about insurance, I know there a business, and they shouldn't necessarily be mandated to pay, but it comes down to fairness and morals, they pay for procedures and meds for people that aren't even half as sick of us, and they already approved 3 months and now there trying to stop it after 2 weeks, that's what get's to me, and I've considered maybe ordered the meds from on online pharmacy or something
Posts: 229 | From Forty Fort, PA | Registered: Feb 2012
| IP: Logged |
posted
Oh no-- i DO think it should be about morals. That was my point, was that to you and me...and any logical person they SHOULD pay for it...but they don't care.
I just wrote that cause i know a lot of people, myself included have thought that insurance companies would do the right thing, and have been horribly let down and have not had a back up.
Fight, fight, fight! BUT, often these fights are long, so try to find a back up cause they may deny you and i want you to be able to get your IVs!
Posts: 844 | From CA | Registered: Apr 2010
| IP: Logged |
posted
thanks whitney, yes I'm going to try and fight it, I called infuse usa or something like that as a back up plan, ya know in the meantime, and for the iv rocephin they quoted me like $40/wk which isn't too bad at all, but I'm still going to try and fight it, because that's just the iv's, I'm still spending so much on everything else.
Posts: 229 | From Forty Fort, PA | Registered: Feb 2012
| IP: Logged |
posted
See if your LLMD will order a brain SPECT scan. If that is abnormal then you have proof of neurological involvement. It is best to have this test done at Columbia University in New York.
The test is cheaper than an MRI but insurance will frequently deny the test unless the doc knows how to request it. Needs to say it is to confirm brain infection (neuroborelliosis).
Another option is to bargain with the insurance company -- learn to do dressing changes yourself and say you do not need home health care if they will cover the meds. The meds should actually be covered under your prescription plan anyway instead of major medical if you buy them and mix them yourself.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
| IP: Logged |
posted
thanks seibertneurolyme, my doc just sent all the info again to the insurance company, so i'm waiting, and yes I do the infusions myself, instead of them coming every day, only once to change the dressing, because they said if they don't come do the dressing change, my doctor would have to discharge them, which I don't know if I should do that yet, but I can do this, because I can get them done at work. The problem is you call the insurance and you can't talk to the decision makers.
Posts: 229 | From Forty Fort, PA | Registered: Feb 2012
| 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/
UBBFriend: Email this page to someone!
![[Big Grin]](biggrin.gif)
Printer-friendly view of this topic