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Has anyone ever been approved for more than 3 months of IV Rocephin?

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Posted 6/1/2009 11:21 AM (GMT -8)
Just wondering if anyone has ever been approved for more than three months of IV's by their health insurance.  Initially, I was told not to hope for more than 28 days but was fortunate enough to have it extended another 8 weeks for a total of 12 weeks.  I only have one more week of paid meds and nursing and am wondering if I should hold out any hope for another extension.

 

Posted 6/1/2009 12:57 PM (GMT -8)
Haven't been there, experienced that yet, but it will come up. I'd ask the doc if there are any generic abx that might be effective -- like Walmart's $4 prescripts and just pay for them.

Others here would know more about this, and if there are any inexpensive generics that are effective.
Posted 6/1/2009 2:40 PM (GMT -8)
The answer is probably NO. Last year I was also told 2 weeks then 28 days at most then got it extended to 2 months. They wouldn't budge more than that even after an appeal. I paid the extra 2 months out of pocket. Blessings to you
Posted 6/1/2009 4:04 PM (GMT -8)
+Lyme, Thanks for responding. I've been shopping around and the lowest price I found is from a company in Florida at around $265+ per week and of course that does not include nursing for labs and bandage changes.

Minerals, Thanks. I figured as much but was holding out a little hope. I guess I'm lucky they covered it for as long as they have.
Posted 6/1/2009 4:07 PM (GMT -8)
I've had 3 rounds of IV rocephin... each for 4-6 weeks. During the next round I'm going to beg to stay on the abxs. longer. I don't know what else to do.
Posted 6/1/2009 4:44 PM (GMT -8)
Jelainep, I hope your insurance has covered it so far. Do you plan on doing another round soon? I agree that it's a good idea to beg for more time. Unfortunately, 4-6 weeks is usually not long enough to do much of anything although that's what insurance companies usually limit us to.

I went undiagnosed for many years and my llmd stressed that I will need at least six months of IV Rocephin for any chance of recovery or reversal. After all I've read I tend to believe this will be my best shot so I need to find a way to come up with the money. And we are suppose to avoid stress. Ha!!
Posted 6/1/2009 9:54 PM (GMT -8)
Yes, I was approved for 13 months of IV antibiotic therapy that started November 2007 and ended January 2009 . At first I was on rocephin, then zithromax with rocephin 3x's a week plus mepron for babesia, then clyndimycin with rocephin 3x's a week. My insurance company paid for everything including 2 picc lines put in at an office and then two picc lines put in at the hospital, and weekly nursing visits. Things started off with a bang on the first picc line because on the first bandage change the nurse cut the line! We did have to pay our $3000 deductible first before the insurance coverage kicked in, but HEY - I am not complaining.

I think Aetna believed I was sick, the labs were not all CDC positive, however they were very high for Bartonella, babesia, a couple of lyme bands, a positive elysa, plus mycoplasma, chlamydia pneumonie, and epstien bar. Off the charts on those.

Also had previously bad brain spect that improved with IV plus some MRI brain lesions. I have been off and on treatment since 2003 but on this last go round of 14 months I have had significant improvement. I still have to take orals but I am functioning at about 75%.
bcaring
Posted 6/2/2009 6:39 AM (GMT -8)
My insuracne company refused to pay past 28 days for Rocephin, I purchased Rocephin vials, shopped around at my local pharmacy and got it for approx 400.00 for 30 days of 2 gm vials, I purchased the IV bags and saline and heprin through my pharmacy too, tubing and dressing change kits I got on ebay, I learned to change the dressing myself with the help of one of my kids, your labs should be covered regardless if the Rocephin is or isnt paid for by your insurance company, I did need to mix the Rocephin with the IV solution myself and its very simple, feel better, I think I got much better from Rocephin, I did Rocephin , Mino and Zithro all together for 3 months and did some orals before and after the Rocephin
Posted 6/2/2009 9:01 AM (GMT -8)
Bcaring, That's fantastic. I'm glad they paid for all of your treatment and even better that you actually improved. How long did it take for the brain issues to start clearing up. I also had a pretty bad SPECT scan and lesions. I'm concerned because I haven't had any significant improvements yet and am almost at the end of my third month.

Judy3, Thanks for the information. I'm glad you feel much better and hope for the same. How long did it take before you started to feel better? Are you still on any meds? I'm also taking Zithro, Mino, Mepron and Art in addition to the Rocephin.

I'm trying to stay positive but as we all know at times it's really hard. My next appointment with the llmd is next Monday. Please wish me luck!
Posted 6/2/2009 9:22 AM (GMT -8)
I have been approved for six months. I am going into my fourth month. My insurance company always approves me for 2 month periods. I know I am very fortunate because many will not approve it for more than 3 months. LLMD wants me on it for a year, but probably six months will be the limit, but we will try. I am also on 400mg Doxy (oral) and my insurance co-pay is $5.00 for a 3-month supply.

I was reading where you were asking about brain fog clearing. Mine just started getting a little better - I am better with word recall as well.
Posted 6/2/2009 10:05 AM (GMT -8)
At this point, my husband and I really don't care what is and isn't covered. We are lucky to be financially secure. I just want to get better. I'm so tired of being sick.
Posted 6/2/2009 11:01 AM (GMT -8)
Lala429, That's great news. Do you mind me asking who you have insurance with? I have BC/BS and was told it can be one of the worst for approving IV meds for Lyme. Since I was approved beyond the 28 days I'm hoping maybe this a sign they are finally see the light. Well, I can hope can't I. LOL

Jelainep, You are very fortunate that you don't have to worry about paying for meds but very unfortunate to have this darn disease. I'm also so tired of being sick and now worried about being able to afford the meds. Ugh!!!
Posted 6/2/2009 11:20 AM (GMT -8)
My insurance company (United Health) only paid for one month..we had to pay out of pocket for the other 5 months but luckily my prescription plan paid for the Rocephin. We had to pay for all the supplies ourselves but strangly enough they paid for the Picc and for the nurse to change the bandage weekly they just wouldn't pay for the Rocephin.

Try getting it through your prescription plan..we only had to pay the co-pay. My LLMD Dr. H in New York even wrote a letter to the insurance company but they wouldn't budge...

Kim

Posted 6/2/2009 11:50 AM (GMT -8)
I have OneNet PPO (formerly Alliance PPO) through the Steamfitters Union. My LLMD told me that BCBS is not very cooperative but she has been succesful in appealing denials with them...sometimes for up to 6 months of treatment, so don't give up if you are denied initially. What got mine to pay was the CD-57 - mine was a 16. I get it checked again in 5 weeks to see if it has gone up since February.

If I am denied for the full year, I will not be able to pay - I just do not have disposable income like that. It's $3000 a month total (meds, supplies, nurse, labs) and I pay $500 out of pocket, which is already a strain, but that's all I can do. But I hear that Bicillin IM injections are really helping Lyme patients so I will consider that. I am also hearing good things about oral Omnicef (cannot recall the dosage). My LLMD told me that I will very likely be on oral abx for the rest of my life - luckily my insurance covers all orals up to $9,999,999, so I never have to worry about that.
Posted 6/3/2009 6:37 AM (GMT -8)
Lala429, Thanks for the info. If you need to continue without coverage, there is an infusion company in Florida (Infuserve) who will supply the meds and all necessary supplies (including bandage change kits) for around $260 per week. I've already purcahsed a week's worth that's sitting in my freezer and the customer service is great. At my next doctor's appointment, I'm going to ask if it would be possible to pulse the Rocephin when coverge ends so this way it will cost even less per week, probably more like $200 per week.

I was also told that most insurance companies will pay for the weekly labs and bandage change if you go to a doctor's office or lab. Unfortunately, I'm just not well enough at this point to get to an appointment once a week.

Please keep in mind going this route would cost about $800 per month as opposed to $3,000.

Good luck.
Posted 6/3/2009 6:40 AM (GMT -8)
ktp812 - Thanks. I'm going to look into it although I think I already might have and just don't remember right now. LOL

My doctor has already gotten me one extension and with any luck I might just be able to get another although I'm not counting on it at this point.
Posted 6/3/2009 7:33 AM (GMT -8)
Lymekiller, I felt pretty bad while on IV. However it was only as time went on after I was off it that those symptoms went away. I am still on orals gradually adding cowden for the past 2 months. Everyone responds differently to treatment. My main symptoms were not brain fog although I did have it. My main ones were and still are muscle pain.Blessings
Posted 6/3/2009 10:57 AM (GMT -8)

bcaring said...
Yes, I was approved for 13 months of IV antibiotic therapy that started November 2007 and ended January 2009 . At first I was on rocephin, then zithromax with rocephin 3x's a week plus mepron for babesia, then clyndimycin with rocephin 3x's a week. My insurance company paid for everything including 2 picc lines put in at an office and then two picc lines put in at the hospital, and weekly nursing visits. Things started off with a bang on the first picc line because on the first bandage change the nurse cut the line! We did have to pay our $3000 deductible first before the insurance coverage kicked in, but HEY - I am not complaining.

I think Aetna believed I was sick, the labs were not all CDC positive, however they were very high for Bartonella, babesia, a couple of lyme bands, a positive elysa, plus mycoplasma, chlamydia pneumonie, and epstien bar. Off the charts on those.

Also had previously bad brain spect that improved with IV plus some MRI brain lesions. I have been off and on treatment since 2003 but on this last go round of 14 months I have had significant improvement. I still have to take orals but I am functioning at about 75%.
bcaring

Where are you and your doctor located?  What's your doctors names (initials)?

Posted 6/3/2009 8:10 PM (GMT -8)
Well, I will tell you what. Although I have not yet been prescribed meds, if my ins (BCBS) refuses to pay for the scripts a Dr has prescribed, after some certain time, yet my Dr believes I need to stay on them longer, I will consult an attorney. I would think Ins co's would want to be extremely careful how they tread. I would also think they would choose for you to be cured. I would tend to think that this would be malpractice on the part of the insurance company.
Posted 6/3/2009 9:07 PM (GMT -8)
I agree +lyme
Posted 6/4/2009 6:03 AM (GMT -8)
+Lyme, RD - I agree too but unfortunately the insurance companies have the IDSA backing them up so they seem to be covered. The insurance companies are basing their decisions on outdated and dangerous IDSA guidelines that for some reason seem to be written in stone. It's unbelievable how much power these insurance companies (health and long-term disability) have and believe it or not some of the laws are written in such a way that the insurance companies are protected, not the patient/client. I refused to believe all of this was possible and happening but unfortunately it's a harsh reality I was forced to come to terms with. Hopefully, things will change some day soon.
Posted 6/6/2009 2:11 AM (GMT -8)

bcaring said...
Yes, I was approved for 13 months of IV antibiotic therapy that started November 2007 and ended January 2009 . At first I was on rocephin, then zithromax with rocephin 3x's a week plus mepron for babesia, then clyndimycin with rocephin 3x's a week. My insurance company paid for everything including 2 picc lines put in at an office and then two picc lines put in at the hospital, and weekly nursing visits. Things started off with a bang on the first picc line because on the first bandage change the nurse cut the line! We did have to pay our $3000 deductible first before the insurance coverage kicked in, but HEY - I am not complaining.

I think Aetna believed I was sick, the labs were not all CDC positive, however they were very high for Bartonella, babesia, a couple of lyme bands, a positive elysa, plus mycoplasma, chlamydia pneumonia, and Epstein bar. Off the charts on those.

Also had previously bad brain spect that improved with IV plus some MRI brain lesions. I have been off and on treatment since 2003 but on this last go round of 14 months I have had significant improvement. I still have to take orals but I am functioning at about 75%.
bcaring


I too have been approved for long term antibiotics (IV) I have been on them since Oct 08...which I am sure seems like nothing to you, but I am feeling really overwhelmed because my LLMD wants me on IVs for at least 15 months. I feel like I have been on them forever and for only one month did I feel some improvement. Now I just feel like I am going down hill. Like everything is falling apart. All of these symptoms are coming back so strongly and it makes me feel discouraged. It also makes me feel like maybe I am crazy and I am only mentally making myself feel this way.

My question for you is did you go through any of this?? Did you feel discouraged...or like nothing was improving even though you had been on IV treatment for awhile.

I too have babesia and bart I also have type one diabetes, gastroparesis and a bunch of other illness. Things I have delt with before I got lyme and what not. Does this have an effect on why it will take so much longer to get better? I guess I am just waiting to wake up and feel dramatically different. Am I crazy for thinking that??

I guess I am asking you because it sounds like you might be or have been going through something similar. Just looking for some words of wisdom I guess.
Posted 6/6/2009 3:42 AM (GMT -8)
When I was on IV the first time I just kept on improving. I could actually feel myself getting better as the weeks went on. It was wonderful and I thought I was on my way to  being me again..then I had to stop due to gallbladder problems. My LLMD told me at the time I should feel a difference within 2 months but some people take a little longer.

If you are not feeling further improvement maybe your doctor can pulse in another IV medication. That is what they were going to do with me but I didn't need to. I was going to do Rocephin 4 days and then Zithro for 3 days.

I was just on IV again for 3 months with NOTHING...no improvement at all so I stopped.

The insurance company had written me a letter stating there was no where in their literature that said IV treatment is helpful beyond 1 month and there was no way they were going to pay for it. True they go by the IDSA guidlines but hopefully some day that will change because if I had stopped at one month I never would have had the 5 wonderful months afterwards.

Even though I eventually relapsed I think I just was not put on the proper meds to keep me at the place I was.

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