Approved for IV meds!

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scorpio1960
Veteran Member


Date Joined Jan 2009
Total Posts : 914
   Posted 10/15/2009 2:37 PM (GMT -7)   
Hi All, I apologize for being away from the forum fo so long and hope everyone is doing well and making progress on their journey to getting well. 
 
It's been a real struggle and I've not made as much progress as the doctors hoped for but I'm still holding out hope.  Thank goodness my wonderful doc has not given up on me yet.  lol 
 
I'm posting today to share some good news I just received that I hope is a sign things are changing in the medical community and with the insurance companies.  Anyway, I was just approved for another month of iv meds and in-home nursing.  I've been on IV Rocephin (and many other meds and supplements) since March with a few short breaks here and there.  Last week my doc submitted an order for IV Doxycycline and unbelievably the insurance company approved 4 weeks, after covering 6 months of IV Rocephin.
 
In addition to not feeling well enough, I also have not been posting because I don't want my situation to deter someone else from going the IV route.  I know it's sometimes a very hard decision to make but I am still a big advocate for giving it a try in more difficult/stubborn cases.  There are so many cases where it has worked wonders when everything else failed.  Just keep in mind that usually the longer you wait, the longer it will take to see improvement.  My case is definitely not typical but I still have faith that one day all the meds, supplements, diet, etc. will kick in and I will see big improvements. 
 
It's sometimes difficult for me to post or answer questions, so please be patient with me.
 
I miss all of you and will try harder to visit here more often.  Even though I haven't been on the forum recently, you all have been in my thoughts and prayers. 
 
Valerie
 

Willowrose
Veteran Member


Date Joined Oct 2009
Total Posts : 699
   Posted 10/15/2009 3:00 PM (GMT -7)   
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
I have Lyme; it doesn't have me.


Nicky D
Regular Member


Date Joined Jun 2009
Total Posts : 361
   Posted 10/15/2009 4:26 PM (GMT -7)   
Wow Valerie! That's awesome news (about your insurance company). Hopefully they keep it up!

As for IV- I know a girl who was only sick for 8 months (I think it was 8 months, it could be 6 months, I forget) before starting treatment. She did 8 months of IV (six consecutive, the other two spaced out randomly, due to Dr issues) and 4 months of heavy-duty oral antibiotics, and it was only at the 9 month mark that she started to feel improvement- but by 1 year, she was nearly 100% better. She is continuing antibiotics, but by now (1.25 years after she started), her only symptom is a numb big toe. A year ago, she had to be on IV fluids, because she was unable to keep anything (food or water) down.

I'm not meaning to be depressing, and say it will take forever to get better. It's just that everyone is different. Some people who are sick for much longer only require 5 months of IV....so you never know. And you never know when you are going to start feeling better.

I'm glad to have you back!

Nicky

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35859
   Posted 10/15/2009 4:56 PM (GMT -7)   
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!!!!
It's been said:LD patients can be as ill as people w/ congest. heart failure & in as much pain as post-op patients.


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 10/15/2009 6:01 PM (GMT -7)   
Valerie,

It's so nice seeing you posting again. We all missed you! I'm soooo glad that your insurance company approved you for another month. I hope and pray that it goes like that for me. You are one courageous lady and even though you sometimes don't feel like posting, you still bring our spirits up when you do.

I know you are still going through a rough patch and I just want you to know that you have definitely been in my thoughts and prayers. You know that you can email me, text or call anytime you need to talk.

Big hugs hun!
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

Co-Moderator Lyme Disease Forum


scorpio1960
Veteran Member


Date Joined Jan 2009
Total Posts : 914
   Posted 10/15/2009 7:39 PM (GMT -7)   
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.

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 10/15/2009 8:11 PM (GMT -7)   
Valerie,

You are a complete sweetheart! I too feellike we've known each other forever. You keep on keeping on! You WILL make it through this!
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

Co-Moderator Lyme Disease Forum


Willowrose
Veteran Member


Date Joined Oct 2009
Total Posts : 699
   Posted 10/15/2009 9:16 PM (GMT -7)   
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
I have Lyme; it doesn't have me.


scorpio1960
Veteran Member


Date Joined Jan 2009
Total Posts : 914
   Posted 10/15/2009 11:06 PM (GMT -7)   
Rose, You are right we are all in this thing but just remember we are all in it together. You are most definitely are not alone. I sent you the information you requested and please don't hesitate to ask me any questions. Good Luck. Valerie

scorpio1960
Veteran Member


Date Joined Jan 2009
Total Posts : 914
   Posted 10/15/2009 11:10 PM (GMT -7)   
Thanks CG. Now, I neeed to catch up on how you're doing. Did you ever change doctors?

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 10/15/2009 11:26 PM (GMT -7)   
Sure did. I'm seeing one in Florida now. It's a 12 hour drive one way! So worth it though. I really LOVE this new doctor and his staff is great too. When I call, I always get called back the same day or a few hours later which is awesome.

I have some neurological problems going on and the new doctor thinks it's Bartonella which makes sense. I got scratched by a kitten a few years ago and remember feeling achy and my lymph nodes were swollen. He also thinks I've been having Lyme since I was a kid, so that's interesting. I stayed in the woods. We used to go camping, ride horses in the woods and I was also in girlscouts. We would set up tents in the woods, lol. I should have just built a tree house, haha!

Anyway, I start Levaquin soon for Bart then he wants me on a Picc line. I
will be getting IV Rocephin and pulsing Flagyl(orally).

I'm really glad I talked to you about the IV. After we discussed it here, I pretty much set myself up mentally so I am not as anxious anymore.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

Co-Moderator Lyme Disease Forum

Post Edited (CajunGrl) : 10/16/2009 12:33:13 AM (GMT-6)


Willowrose
Veteran Member


Date Joined Oct 2009
Total Posts : 699
   Posted 10/15/2009 11:40 PM (GMT -7)   
Scorpio,

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

Rose
I have Lyme; it doesn't have me.


RottenDog
Veteran Member


Date Joined Apr 2009
Total Posts : 1013
   Posted 10/16/2009 12:06 AM (GMT -7)   
Hi scorpio,

its nice to see you back. i pray daily for everyone and have missed you also. its great news that your dr is able to get you your meds, let alone for so long. thats awesome. keep us posted :)

¤°´¯BIG.¤*¨*¤(¯`´¯)¤*¨*¤.Hugs¯`°¤.
   RD
 
still looking for answers.
 
Remember that advice is free, its your choice what you do with it.  :)


Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35859
   Posted 10/16/2009 1:04 PM (GMT -7)   
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
It's been said:LD patients can be as ill as people w/ congest. heart failure & in as much pain as post-op patients.


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 10/16/2009 1:40 PM (GMT -7)   
Traveler,

Sometimes you just have to be that way. I am very blunt and straight forward too. I think it works for me. If you just sit there and say nothing, you get stepped over, especially with doctors. And don't worry, you don't step on anyones toes here. We should all be able to express ourselves. Ummm, in an adult mannor of course, hehe:) I don't want someone cursing on here and saying that I said we could all express ourselves, haha!
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

Co-Moderator Lyme Disease Forum


scorpio1960
Veteran Member


Date Joined Jan 2009
Total Posts : 914
   Posted 10/17/2009 7:16 PM (GMT -7)   
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.

RottenDog
Veteran Member


Date Joined Apr 2009
Total Posts : 1013
   Posted 10/18/2009 9:10 PM (GMT -7)   
no as you said my horrid doctors have not done anything for me to date. but i am working on other options right now. if it helps me i will be sure to post so maybe others can get some help too.

but for right now i do not wish to give anyone false hope. so till i know more i am not able to post on it. i hope you understand. :)
   RD
 
still looking for answers.
 
Remember that advice is free, its your choice what you do with it.  :)


blessings723
Regular Member


Date Joined Oct 2009
Total Posts : 289
   Posted 10/31/2009 11:05 PM (GMT -7)   
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!
I refuse to stay sick! Period. 
 
 

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