With the hell I've been through over the past 13 years and the battle with insurance I've had even in recent years I'm looking to stand behind and help out however I can anything that might be in motion already to make a change in the state of NJ. Any info on the subject would be greatly appreciated.

I'm currently in the process of dealing with my Ins. Co. trying to recoup money lost after having to pay out of pocket for IV treatment. I spent months on two different types of oral antibiotics and both proved ineffective for dealing with my latest really bad bout with Lyme.

After my doctor did another round of tests including a spect scan she wanted to get me on IV asap, but insurance denied the claim.

Even with a detailed 13 year history of battling chronic lyme, blood test results from multiple labs (including the insurance companies "approved labs"), conclusive spect scan results, failure of lesser treatments, more evidence then at all necessary having been provided, and jumping through whatever hoops they asked me to, the first appeal was declined (their reasons for declining the appeal were given in the form of one of their own doctors citing decade-old references which conflict with most of what we know today).

They had managed to keep me tied up in the appeal process for long enough that I couldn't waste any more time toying with them while the disease continued to damage my body so as soon as the appeal was denied my family ponied up the money and we paid out of pocket for what became 9 weeks of IV treatment.

Since then the level of the bacteria in my body has been the lowest it's been probably since I first discovered I had the disease all those years ago.

Unfortunately the funds in my bank account have also declined in a similar fashion. Due to battling Lyme on and off I haven't managed to finish my BS yet at the age of 27 and I started college in 1996.

So between paying for schools (which don't make many special financial accomodations/exceptions for those of us that can't reliably make it through every semester/year), paying medical bills, being able to work less and less as time has gone on, keeping up with normal costs of living+, and now having lost a load of money on something insurance should have covered, my family and I are pretty tapped out.

The simple fact of the matter though is that if I hadn't had a family supportive enough and wealthy enough to help me out financially (and with whatever else I need), I'd never have gotten the treatment I needed or best case scenario if I was persistent enough perhaps they would have covered treatment once I eventually started to completely lose motor functions, etc.

I'd imagine that most people aren't as fortunate as I am in that manner and I hate to think that people are out there having their minds and bodies degenerate due to Lyme and going untreated because their insurance company refuses to recognize modern knowledge and treatments so they can make more money.

Heck, due to the degenerative nature of the disease, every time we even have treatment delayed directly or indirectly due to insurance issues, it's hurting us more in the long run. When I think about it, my treatment has been delayed even for non-IV treatments in the past, which makes me wonder how much healthier I'd be and how much better my life would be right now if it wasn't for the sum total of all that time having my system damaged while I waited on treatment I should have been given immediately.

The point is that I don't want to put up with these types of games the companies in this state are allowed to play and what they're allowed to get away with and I don't want anyone else with Chronic Lyme to have to put up with it either. It's bad enough just having the disease itself. Seeing bills being worked on and/or passed in other nearby states is a glimmer of hope to me.

So again, any tips on where I could track down legislation in effect, groups working on putting things together, or things in the works as far as NJ Legislature dealing with diagnosis and treatment of Lyme, it would be greatly greatly appreciated.

Best of luck to all those in Maryland or headed there! I'd come down and show my support in person on Thursday if my health was up to it, but I'm still in the middle of recooperation mode.

Jason

You do not need a lawyer and the process is free. Once you submit the claim, the wait can be lengthy (6-9 months when I did it). In your case, if their decision is against you, you've lost nothing as you've already paid out of pocket. However, if their decision is against the insurance company, you win huge! The insurance company would have to pay within a set period of time (10 days in my case) and your money would be returned to you. It would certainly be worthwhile if you've not filed a claim yet.

I lived in NJ for 7 years (1988-1995) where I acquired Lyme in 1989. In 1990, my insurance company refused to pay for a very pricey treatment that they were supposed to reimburse. At any rate, after getting nowhere with the company after multiple appeals, letters, etc, I filed a DoI claim (you submit all the documentation you have). Six months later I received a decision finding in my favor, the money was reimbursed by the insurance company, and I was refunded what I had paid.

Its worth a shot.

Give these folks a call. Perhaps they can tell you how to file a claim:
http://www.state.nj.us/dobi/ombuds.htm

Glad to know you were reimbursed. I'm currently still in the appeals process (which I'm not too optimistic about since we already paid for it), but should appeals fail I will be looking into other methods of recovering the money so I appreciate the tip. Fortunately for me, my father is a lawyer and will help me out in any way possible so I have good guidance in that aspect at least. The hardest part is getting all the necessary documents/letters I need from my doctors since they're very very busy people.

Anyway, again, thanks for sharing the advice with me. My father and I have started discussions of ways to handle this should the current appeal be denied again, so I'll definitely bring this up.

Please do an EDIT on your lengthy paragraph posts here. Limit them to 6 lines for those of us with late stage lyme. We have so much brain fog, we can't read/comprehend. Thanks so much Jason.

You can edit your posts/replies anytime. You just can't edit your TOPIC line.

Here's TREEPATROL's and tincup's combination newbie links.
http://flash.lymenet.org/ubb/Forum1/HTML/029917.html

Print off the links then check them off as you read as you could spend several months reading all of this.

print & read Dr. Barrascono's info first; you will come back to this often.

Also, see Cheryl's extensive web sites on: LD DIAGNOSIS, SYMPTOMS, & TREATMENT ... wonderful!
http://www.lymeinfo.net/lymediseasetreatment.html

Jason, check Cheryl's site for legislative and the LDA site.

I edited my original post and I hope it's more readable now.

Sorry about not taking note of the spacing rule before posting but it's listed within a second post in the Links For New Members Thread which is why I didn't see it when I read the introductory info the first time. I guess I assumed the top post was kept updated with all the most current guidelines for each such thread.

I'm on the opposite side of the spectrum with the posting issues since I have OCD (which we're pretty sure has been made much worse by the Lyme) so it may drive me nuts putting in paragraph breaks where the don't necessarily belong, lol.

I did check out Cheryl's site before making my post as well, but like you said there's lots of info and I somehow managed to miss a link to this Bill which I found on her site today.

Still would love to hear about any updates to this or other proposals in NJ if anyone has info handy.

Thanks for the welcome and the help!

Sorry to hear about your struggle getting coverage for IV. While I don't have too much more for you on this, I just wanted to say it is inspirational to hear your drive for some legislation hear in NJ. Keep your 'drive' for this!