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03/24/2009 08:13 PM

Is CDC positive not enough?

cmal
cmal  
Posts: 372
Member

My only positive results come from Igenex. Igenex positive and CDC positive. It seems that no Dr. that participates in my health insurance will treat me. Either they don't believe in the treatment used for late stage/chronic lyme or they don't "buy" the results gotten by Igenex and their own labs came back neg for lyme. This is surreal. I have to pay $450 to see a LLMD for the office visit and another $600 in tests for co-infections? Am I missing something? What happend to co-pays and 80/20 costs? There has to be another option. I don't know how we'll afford this. I am new to this particular insanity.

Thanks,

Christi

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03/24/2009 08:17 PM
Canuck
Canuck  
Posts: 1674
Senior Member

I know. I lucked out and my LLMD is like an out of network doc and I pay just an out of net co pay (like $30) ..Many of the LLMDS just don't file the insurance as it became such a hassle- did you check with you ins. co or did you file the paper work? Don't let them bully you- this is a specialist, you are CDC positive , even though he is not on the plan with the ins co. they work for you and you have been left with no other option than to see him.

You have met govt. criteria to be treated..

The option is- tell them - if they have denied, appeal. The LLMD should appeal, then - he should talk to the Med director of your ins. co. he will write a letter as well (sometimes they charge you a fee for letters too , sorry but they do as this happens)

what insurance do you have?


03/24/2009 08:39 PM
cmal
cmal  
Posts: 372
Member

Aetna PPO. The LLMD office said I have to file my own claims and pay up front. I guess thats better than nothing, it's just tricky even coming up with the up front payment. I guess I'm just shocked. I've never experienced anything like this and trying to explain to other people why I have to pay so much and only see an LLMD is very tricky when I am having such a hard time comprehending it all myself! This is some crazy stuff. I can't wait to feel better. Is so funny...I felt like I had won the lottery when I got my positive test...this piece of paper was so important to me and now I have to pay through the nose to get someone to recongize its value. Uuugh.

03/24/2009 08:45 PM
Canuck
Canuck  
Posts: 1674
Senior Member

You are so right, like in the 'you know you're a Lymie if' the day you get your diagnosis and you feel like you won the lottery --then I added- it goes all down hill temporarily...

Do NOT let them deny you- hear me? They CANNOT deny this .... No NO NO NO NO NO NO NO NO NO NO NO NO NO NO NO!!!!!!!!

Sorry.... Aetna is usually not that bad to deal with , they should assign you a Case manager (whether you need one/ use one or not) and that can help you..

I used to be a Case Manager - and believe me- the people at the insurance company - the nurses will work to be your advocates, they will do their very very best to make sure you get everything covered.

And you- never take no for an answer..

See I get very feisty with this stuff... I kind of miss my job just a tad- it's really frustrating for patients and rewarding to be able to fight for them and get them what they deserve.

went on a rant there....

don't give up


03/25/2009 08:17 AM
dharma79
dharma79  
Posts: 1180
VIP Member

Cmal-

You are actually better off than many for having PPO insurance rather than HMO. At least with PPO you have a reasonable expectation of being able to get a good portion of your bills repaid.

People with HMO are screwed.

Sad

It is sad to say but many LLMDs don't take insurance because they don't care to waste their valuable practice time dealing with everyone's insurance...

That would mean they'd have to do it after hours...and yes, you will get a bill for the doc having to spend lots of extra time filling out paperwork and writing letters, etc...

The insurance companies don't make it easy for the patient or the docs on purpose...they are counting on doctors just opting not to bother and patients being so annoyed they'll often just pay it and try to move on.

This is, unfortunately, the most political disease ever...and the insurance companies have the upper hand right now because they have the IDSA and Yalies in their corner.

That's why we, as patients, need to make sure that the general public and our legislators be made aware of how patients and their rights are being abused terribly by insurance companies and a large portion of the established medical community.

And anyone who attempts to help or advocate for Lyme patients is quickly labled a whacko, an idiot or hysterical...including Lyme patients themselves ... despite plenty of evidence that they are indeed not any of those things.

This makes me so mad!

You are in VA, cmal. Your House Rep, (R)Frank Wolf is on our side. Write to him and let him know you are glad for his support.

And write all your other legislators to also support Lyme initiatives in the future...as we do have some bills being brought to the floor in the very near future.

If you don't want to just sit back and feel taken advantage of anymore...there are ways to fight back!

Hang in there! You are not alone...Wink Welcome!

Post edited by: dharma79, at: 03/25/2009 08:21


03/25/2009 10:45 AM
Bethy

cmal,

I have Aetna Open Access HMO and just phoned them to see about getting an out of service provider for Lyme disease. The only way would be for my GP who ran the WB Test that came back positive put in a pre-certification justification for me to see the LLMD. The Customer Service Rep asked me twice for the name of the doctor I am going to see and I just played ignorant to the name. After watching "Under Our Skin" I didn't want a LLMD getting hastled and put out of business by my insurance company even before I get in to see them. I imagine i'll just have to pay out of pocket and hope for the best on filling prescriptions.


03/25/2009 04:24 PM
cmal
cmal  
Posts: 372
Member

Thank you all for your help and insight. This is mind blowing. I am trying to set up a screening of UOS at my kids elementary school. People just have no idea...myself included...of what a mess this whole thing is. I am pissed! It takes a lot for me to feel that way but this is just wrong on so many levels....I guess I don't need to tell any of you that! I spoke to Aetna of course they have no Lyme specialists, she told me 60/40 after $700.00 deductible. That is a little easier to swallow. I plan to be a very squeaky wheel throughout this insanity....I politely listened to every incorrect diagnosis for almost 4 yrs (my personal favorite? I was told I was self-inducing 104 degree fevers for attention and was put on 300mg Wellbutrin and 150mg Effexor. Lovely.) I plan to re-visit old docs and invite them to the UOS screening since that is the least they could do! I feel so lucky to have a place to vent where people know what I am talking about. Thank you!!!

Christi


03/25/2009 08:45 PM
Canuck
Canuck  
Posts: 1674
Senior Member

THOSE ASSES! Gosh I wish that one would have been recorded! I am so sorry, it brings out the fighters in us all.

Do not let Aetna bully you. Because they do NOT offer Lyme specialists they have to grant you at least an out of network rate of 70/30.. Try. I know you will. Kudos for trying to set up the screening .. I am doing the same


03/26/2009 05:54 AM
dharma79
dharma79  
Posts: 1180
VIP Member

I am also trying to work up a presentation that I can bring to the parents and staff in school districts in my general vicinity.

I think it's important to make sure, when setting up a screening of UOS that it is clear to parents and staff that the film should not be viewed by children under high school age.

Christi-

I am always happy to have another fighter in our midst. You are entering the fray at what could prove to be a crucial time for us Lymies to really make our voices heard.

We all share your frustration. None of what we've been through is fair or even legal, in my opinion.

I try to make sure I tell as many people that I meet everyday about the bizarre circumstances surrounding Lyme disease...and why they should also be concerned because they or a family member could just as easily be next.

The truly heartbreaking part for me is that we have no real way to protect our children...Ermm

Anyway, I'm glad to hear you plan to be a squeaker! Good for you! Cheerful

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