Approved for IV meds!

Hi Valerie,

I'm really happy to hear you are doing well and that your insurance has approved payment for your treatments. I'm wondering, when you were on IV Rocephin did you have to fight with your insurance company for coverage, or did they just cover it? I have a friend with Lyme who is about to start it, but her insurance has only approved a 28 day course. She's been told that to pay cash for it would be $2000 a month. I'm looking for any information re what to say to an insurance company to get them to pay or, if that won't work, where the medication may be available for the lowest cost.

I'm new to this site; glad to meet someone who's further along.

Rose

Hey Scorpio!!
Glad to hear that you still have the full support of your Doc!! Great news that your ins. so. approved the meds your doc ordered!!!

I understand why you were a little concerned about posting when you are going through a rough spot. The only thing is - only when you are up to it, of

course- one never knows who or when they might be the "bright spot" for some one else.

I go through periods where I just feel like posting anything - but I usually will still check in. Most of the time, I will find someone going through something that I

can help by giving sympathy & understanding, or it can be someone who is going through something I went

through & I can offer some ideas, or whatever.

I, in no way, wish to make anyone feel guilty - there's just no need for that!! I just believe we Lymies feel so beat down

sometimes we forget that we can actually help someone else with the info we have.

AND... with that being said - I sure hope I haven't stepped on anyone's toes!!!!

Hi Rose, To be honest, even my doctor is shocked that I continue to be approved. He's one of the top llmds and has been at this a long time so I guess he knows what to include in the letters of medical necessity that are required. I know other patients of his with the same insurance have been denied so I think the insurance company might think at this point it's worth it for them to do everything in their power to get me well because I've been costing them a fortune for years now. lol Anyway, I was initially approved for only 28 days of iv rocephin and then they extended it two months after the doctor submitted a letter. I then was approved for an additional three months after another request/letter was submitted. A week ago the doctor submitted a physician's order and letter for iv doxy and I think we're all shocked that I was approved for 4 weeks and advised that another letter of medical necessity will be required beyond that.

I did end up purchasing a few weeks of iv rocephin on my own during one of the waiting periods. There's a fantastic infusion company in Florida who sells meds at a much lower cost. I think the cost for one month of iv rocephin and all related supplies (bandages, saline, heparin, alcohol wipes, etc.) comes to less than $1,000 with overnight shipping. The customer service is beyond great and there's a pharmacist on call 24/7 if you have any concerns or questions. I can't recommend them highly enough.

It's all extremely overwhelming, especially in the beginning. I wish your friend all the best of luck.

Nicky, Thank you so much for telling me what I desperately need to hear right now. I found what you wrote to be encouraging and not depressing at all. I was sick for many years and am hoping that I'll be one of those cases where everything just clicks one day. It's just a little frustrating that even the doctor is disappointed at this point in what little progress I've made so far. The fact that the meds have been covered definitely keeps me going and hopeful. I've been feeling slightly better this week and am now afraid that it might be a mistake to switch from the rocephin to the doxy but will do what I'm told, for now anyway. lol


Traveler, Thank you. I missed reading your posts and can't imagine you ever stepping on anyone's toes. lol It's difficult to explain but I just didn't have the ability - physically or emotionally - to post even though the desire was most definitely there.


CajunGrl, I can't thank you enough for your support and kind words. I feel as if I've known you my whole life and yet we've never met. lol I have no idea how you do it but this forum is so lucky to have you.

Scorpio,
If you wouldn't mind I would be most appreciative if you could email me with the contact information for the place in Florida where you got your rocephin and supplies. Thank you so much for sharing your experience. I'm just beginning the long journey to recovery (and/or at least to getting my life back). It really means a lot to me to hear about how all of you with more experience are doing, to see and share in your courage facing this disease and the treatments, and to know I am not traveling this road alone. It's so easy in my solitary moments to feel the cold hand of panic close in on me. Some days fear abatement is my full-time job. When I feel that way what helps me most is the knowledge that you all are doing this, and, knowing that, thinking so can I.

Rose

Thanks CG. Now, I neeed to catch up on how you're doing. Did you ever change doctors?

Scorpio,

Thanks so much; I sent the information to my friend. I look forward to reading more of your posts.

Rose

Hi Scorpio,
I still understand what you are saying - I still have plenty of those days as well!!

I do hope you continue to feel better!!!

AS far as me stepping on toes - that's a given. My attitude the last several yrs has been DON'T bs me!! I have discovered quite a few docs & others that don't like my attitude - but that was ok - I didn't like theirs either!!

I think I'm a little too straight-forward for a lot of people -

I wish you the best, and hope you will find not only healing, but peace within~
Trav

Thanks Rotten Dog, Sending lots of hugs right back at you and also to those adorable doggies of yours. I'm so sorry for being so out of touch. How are things going with you? Have you been able to get any meds at all out of those horrid doctors?

CajunGrl, I think Bart has been a problem for me too. I don't remember much these days but do remember that we share many of the same symptoms and struggles. Ugh!! When you get your picc please don't hesitate to call me if you have any questions at all. I don't even give mine a second thought anymore and I'm sure you remember how much of a wreck I was about the whole thing. lol I wish you the best of luck with your new doc and still worry about you doing and giving too much of yourself.


Traveler, I don't think you're too straightforward at all and also appreciate when people tell it the way it is. It bothers me that anyone here would even worry about what and how they post what they want to say, as long as they mean well. Don't we have enough to struggle with and to worry about? lol Of course, as CG said, we all need to do it in an adult manner. Considering that we all have different personalities and styles in addition to suffering from major brain fog and sometimes extreme emotional turmoil, communicating can be very difficult to begin with. I for one love hearing everyone's opinions, experiences and points of view. I guess I see things this way because I've been known to put my foot in my mouth on occasion and since getting LD have lost all ability to be tactful even when I have the best intentions. lol I've never seen even a hint of this in your posts and always look forward to reading yours. As for some docs not liking your attitude, well too bad. lol They should take a long hard look at themselves.

Hi scorpio, i'm newer here but i just wanted to say thanks for posting again! I think it means a lot for the newer folks when then veterans stick around. Don't think you are being a discouragment to anyone; actually by reading the veteran's posts we newer members pick up a lot of helpful info- whether its neutral or positive or even negative, we can always learn SOMETHING from what we read. :) Stay strong and keep fighting!