LymeNet Flash: I need help!

This is topic I need help! in forum Medical Questions at LymeNet Flash.

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Posted by marblenose (Member # 6477) on :

Hi Team,
I have ins. covering the delivery of IV Rocephin until next Sat. then I have to jump thru hoops for the ins. co. to continue.(It comes to my home because my LLMD is 1 and 1/2 hours away so going every day since I can't drive with the vision problems is problematic).

I can't get to a neuro until Thursday because of their scheduling and have yet to receive a letter from the ins. co. telling me what I have to do to continue. This info is coming from my LMD's IV person.

A suggestion has been to get the script for the Rocephin powder (which ins. will pay for) and have a medical co. mix it and get me the saline and heparin etc. needed. This will cost a bundle but in between jumping thru hoops I will still be getting those meds in my bod.

This is more illogical than neurolyme. My head is spinning.
Please advise!
Blessings,
Marblenose

[This message has been edited by marblenose (edited 29 January 2005).]

Posted by marblenose (Member # 6477) on :

come on team I need info and support on this. Somenone must know something for me.
Blessings,
Marblenose

Posted by brainless (Member # 6771) on :

Do whatever you need to do to stay on IV.

Posted by beachcomber (Member # 5320) on :

Your ins. co. cannot cut you off unless they formally notify you. At this point, they are asking for more information from the LLMD. You should have received a letter explaining that they are asking for more information. Make sure that the LLMD's office submits bills in a timely fashion to the ins. co., to stay ahead of their requests for information.

In the mean time, your LLMD's office should fax any positive Lyme tests to the insurance co. And, you should try to get your LLMD to refer you to an Inf. Dis. MD or Neurologist whom he knows will confirm his diagnosis.

I am fortunate in that my LLMD is and IDMD and we were able to get insurance coverage because the Neuro MD I saw wrote that I had cognitive difficulties not consistent with a woman of my age and IQ. HELLO? My MD said to toss that out as the ins. co. would just tell me to go to a shrink or to take Ritalin.

You just need the Dr. to say you have Lyme and you need IV, based on clinical evaluation.

You can also call your State Representative and he/she can & will write to the Ins. Co.

Keep at it. If all else fails, you can apply for the free meds program, based on financial need (if you do indeed have financial need). Or, you can risk it and get the powder from a RELIABLE Canadian Pharmacy.

Posted by marblenose (Member # 6477) on :

Thanks for the info.
I am terrified because I do not have the stamina or the brain power to debate with the ins. co, I live alone so besides my two wonderful dogs, I am it in the two legged department.I have yet to receive notification from the ins. co. and the jig is supposedly up next Sat.
The Neuro. my LLMD uses has a 4 page waiting list, so I am scheduled to see his partner. I will call my LLMD and ask him to pull some strings for me.
I fear I am not up for this task.
Thanks again for your replies!
Blessings,
Marblenose

Posted by achey (Member # 6284) on :

marblenose:
my LLMd's office set me up with a non profit mediation co that worked btwn the LLMD, insurance co and infusion co to get my meds paid for and delivered weekly to my door.

Where do you live? maybe there in an infusion co in you area that will recieve your the rx from your LLMD and work with your insurance co for you.

Once I found the right infusion co , they delt w/ ins. co...didn't need mediation co any more.

I hope this make sense. feel rotten today

Posted by Lynn Lymemom (Member # 19) on :

(oops sorry)

[This message has been edited by Lynn Lymemom (edited 30 January 2005).]

Posted by Lynn Lymemom (Member # 19) on :

Insurance cut my dtr off after 30 days of IV Rocephin - with only 3 days verbal notice. They told us they would pay to have her Hickman line pulled though - how kind of them! Sarcasim!!!!!!! We faught. Her LLMD faught. But to no avail. Sorry, for the bad news.

Each insurance company is different. Hang in there! We ended up getting the powder form from the company drug assistance program, but that was 3 years ago. I don't know if they are still doing that or not.

Sorry to hear you are having to fight this battle.

They have improved the oral abx available. Some docs even use orals exclusively. So may be that's the route you will end up with.

Hang in there! Thinking of you!!!!!

Lynn LM

Posted by marblenose (Member # 6477) on :

Thanx all. I'll keep you posted.
Blessings,
Marblenose

Posted by liz28 on :

Will your insurance pay for oral abx? There are a lot of substitutes you can take for rocephin on the market now: ketek, omnicef, ceftin, minocycline. I think people just like rocephin because it gives you the feeling of taking extreme steps.

Also, some people (including myself) have mixed the powder with saline at home and injected it through a picc line. BUT you absolutely cannot do this unless you are willing to inject it slowly, over at least 2-3 hours. If you speed up, which is easy to do with Lyme brain, it can be debilitating or deadly. There are a lot of posts on this in the search engine, if you want to look.

I did this for seven months. Not only did I become resistant to rocephin, but the whole thing was useless, because I hadn't treated the co-infections. If you are not seeing any improvement after being on rocephin for a while, you should probably check out babs or bart.