First, my doctor believes only IV antibiotics get into the CNS. I have alot of neurological symptoms so that is the way he wants me to go. He does not take insurance.
My doctor only treats 2x a week with IV Rocephin and charges 110.00 per IV. He does this for 8-10 weeks along with oral antibiotics during IV treatment and then following for as long as needed. I am wondering if so little will even help me? He also recomended I look into some of the docs doing the IV pic and much stronger dosing. He just chooses not to do the strong dosing and I am not sure why...
I called a well known doc in SC and they said it is anywhere from 8,000.00- 30,000.00 just for the meds. Does anyone ever get that covered by insurance without a "CDC approved" Lyme test? If so, how would I even begin to figure that out?
I also am wondering if many people get better even after spending such a huge amount of money?
Any experience with the IV antibiotics, cost, insurance coverage, outcomes, etc. would really be helpful.
Im not sure it is even an option for me financially at all so I am trying to weigh it all out.
Thank you! Michelle
Posted by njlymemom (Member # 15088) on :
Michelle, this is a horrible battle and I am sorry that you have to deal with this too.
If anyone has an answer for you, I would love to hear it. I have had extensive neuro symptoms for over 20 years. Not CDC pos (well once) plus 3 coinfections. Have been trying to get IV coverage for 3 years. Cannot afford attorney or out of pocket. Mega oral abx is all I have been doing for nearly 7 years now.
If you get any real advice on how to get through to your ins company, can you pm it to me.
I think I have done everything in my power, with 5 here sick I cannot spend the savings on my tx alone.
Sorry I am not much help here, just wanted to offer you better luck than I have had.
Feeling a little sad about the situation at the moment.
Posted by Tracy9 (Member # 7521) on :
I had no trouble getting Medicare and Medicaid to cover my IV for as long as needed without CDC positive test.
Same for hubby and son, both on Medicaid through our state. Never even a question.
Posted by sixgoofykids (Member # 11141) on :
My cognitive symptoms cleared up with bart treatment. My LLMD told me in Sept. that I would need IV if I wasn't better in three months because of my extensive cognitive issues .... he prescribed Levaquin for bart and I was significantly better the next time I went in, the cognitive symptoms were totally gone.
But, yes, IV is best for CNS involvement.
Posted by tcw (Member # 15698) on :
Just regarding the cost of ceftriaxone treatment, if you are willing to mix and administer the meds at home with a PICC, the cost is probably in the $500-700/month range for 2g/day. That would not cover nursing care, but meds and consumables.
Part of the cost equation depends now how often you change dressings, stat-locks, etc and if you have to pay to get the IV bags and flushes shipped to you.
Getting yourself setup for IV ceftriaxone is difficult - get meds, supplies, PICC placed, scripts faxed, etc. Actually doing the infusions once you are all setup is pretty simple.
Posted by M1she11e (Member # 20333) on :
Tracy- You mentioned your IV abx were covered with no questions asked. Can you tell me what state you live in and how long you were on them?
Did they help?
Thanks, Michelle
Posted by Snailhead (Member # 18091) on :
Hi Michelle, IV ceftriaxone (from what I have learned) is really the best for CNS. Do you have ins? A PICC line is also your best bet, if you can get it. If you have coinfections and your dr. lists them on your dx codes, you may have better luck getting ins. to cover.
I mix my own cef at home, but not in a bag. I get 1 vial of cef. powder, and 1 vial of sterile water, mix it and then inject doing a "push" in my picc line.
Posted by TF (Member # 14183) on :
Just to let you know, I had 2 UBOs (unidentified bright objects) on my brain scan when I was sick with lyme, and I recovered on oral antibiotics only. (The UBOs are gone now also.)
I also had a "major CNS event" when I had lyme. So, you could decide to give high-dose combination oral antibiotics a good try before you go the IV route. IV is not the magic bullet.
I and my friends all got well without IV. Two of them had long-standing major brain involvement and were disabled due to it.
Only do IV with a very skilled doc.
Posted by adunkin (Member # 19612) on :
First and foremost, there are no easy, one size fits all answers. I'm admitting that up front. But do remember there are thousands and thousands of people each year that are treated in ways approved by insurance companies and they do get better. Many of the people on this site were misdiagnosed for a decade or more.
Personally, I was able to work with my MS neuro and an Infectious Disease doc to get 28 days of IV ceftriaxone - 2g twice daily (this is the highest dose allowed). My first symptoms were nerve related in my foot, spreading to hands and then mild cognitive issues, isolated joint pain and fatigue. These progressed over a year before the two doctors (doctors 8 and 9 - the first 7 weren't terribly helpful) agreed to do the ceft. (These doctors are not LLMDs so my insurance paid 100% - outside of the $15 weekly co-pay for the home care nurse.)
I'm not better yet, but I'm improved and allowing my body time to heal and recuperate. Don't forget that damaged nerves need time to heal - regardless of the cause of damage.
Best of luck to you! It's a field full of land mines!