T—
I agree. But I REALLY hope that all the problems I've had with the IV port are unusual and that others don't have this drama. But as I've mentioned before, I share also because I could not find enough info on what the port involved, which was frustrating.
Also, I know other posters who have a PICC (line in arm vs. the port in chest) have not reported problems with it, although it is allegedly more susceptible to infection. But as far as I can tell, these therapies work differently for each person—there is no "one-size-fits-all" approach.
The port was recommended due to the fact that I will be on this Rocephin therapy for at least 12 months and that is too long to have a PICC, according to the experts (too much opportunity for infection and too fussy for too long)… but as you can see, the port has been pretty fussy as well. Only time will tell if it is still better in the long run…
Simela1—
Thanks ;)
I was caught in the gap between coming off of my employer's insurance (after resigning) and facing a 300% increase in premiums through COBRA, which I couldn't justify. So I was without insurance for about
a year (this was before I knew I had lyme). Then Obamacare started up and I had to buy insurance… around this time I started seeing my LLMD. The first couple of appts I paid out of pocket (she has you see her nurse for a 2-hr appt and then a 1-hr followup before you see her—the nurse charges $300/hr and she charges $400/hr). So just to get started with this LLMD, I paid $1300 out of pocket.
Then when we received the positive lyme & co results, and I had decided to continue working with her, and it was apparent that I was embarking on some serious treatment, I joined one of the two insurance plans she works with. So far, the insurance company has covered just about
everything they are supposed to cover as far as office visits, tests and prescribed pharmaceuticals are concerned. They are not covering any of the herbal or supplement treatments over the past year, which has totaled over $5000. And the administrative component of the insurance company is DISMAL. I have to call 3-4 times to get a straight answer on anything, they've botched my payments more than once—reallocating them to another account and then canceling my insurance for non-payment… So from that perspective it's like dealing with the government of a 3-rd world country.
However, as far as my IV Rocephin treatment is concerned—I continue to be surprised by how smooth it has gone. They initially approved a PICC installation (at one of the better hospitals here) but that was because the LLMD's nurse didn't know the difference between the PICC and the port. For 12+ months of therapy, a port is typically installed to reduce opportunities for infection. Even the home health care nurse was confused about
what they were supposed to install. So, I had to intervene and literally place the hospital nurse on the phone with the LLMD's nurse to get the correct order sent over.
And originally, LLMD's nurse told me that the insurance company was only approving 1 month of Rocephin. But once the pharmacy started delivering the supplies (which they do once per week) I noticed that the abx viles indicated it was a 5-month prescript
ion, so I had 5 months, not 1 month approved. Shocking. In all my research I have not come across anyone else who didn't have to labor through approvals after the first month, month after month.
I wonder if I've had an easier process because my LLMD only works with 2 insurance plans, so maybe these insurance companies are familiar with her treatment protocols, having covered so many of her patients. Also, what was surely key for me is that I have a very long history of GI problems, exacerbated by 13 months of oral abx not too long ago, which is well documented in my records. This was also the main reason we opted for the IV abx in lieu of the oral abx.
My insurance premiums last year were about
$280 with no eye or dental but I had a $6k deductible—through Obamacare (actually through the federally funded state program). They dropped coverage of all PPO plans, and the LLMD only participates in the PPO plan. So I had to switch to a $600 premium plan but it does have eye and dental and no deductible—in the end this will probably be cheaper.
I don't yet know what my out of pocket for the IV treatment alone is yet—I haven't received a bill yet. I will owe for November and December since I had such a high deductible. I know the home health care charges $200 per visit (for the first couple of weeks after the port installation they were coming 3 times a week but now they only come once a week to access me before my 5 days of infusions). Not sure how much of that I'll have to pay. And I haven't seen a pharmacy bill yet. I'm taking 1g of Rocephin daily and LLMD will increase that to 2g eventually (seems low—most everyone else is on 4g at their highest dose). But I'm fine with that as long as it's working.
Again —only time will tell. At the rate I'm going, I will still need more Rocephin after this 5 months Rx expires. Also, LLMD is adding in doxy and rifampin for Bart eventually and I want that through IV as well. She tells me I have no choice but to take malarone or mepron for Babesia orally.
Hope that helps—let me know if you have any more q's.
-p
Post Edited (Pirouette) : 1/24/2015 12:25:35 PM (GMT-7)