I am hearing stories of people who have experienced long term recovery without IV treatment. I also have heard of recovery with short term IV treatment. Then, there's info that says to really cure it, you need long-term IV treatment. But, how do you get IV treatment if you don't have $100,000? Is there any help available for people who don't have that kind of money?
Posted by kimp (Member # 19339) on :
Some people have friends that are nurses take care of it so they can limit that expense.
Posted by momofthree (Member # 19490) on :
There is alos hometech-rx.com They can even send you a nurse for bandage changes and will work with your insurance or not
Posted by janet thomas (Member # 7122) on :
IM Bicillin and biaxin is a good possibility.
If you search Bicillin you'll find cheap sources.
Posted by LightAtTheEnd (Member # 24065) on :
Some people have recovered without IV, and some have been on IV but have not achieved remission, so it's not a magic bullet, even though it has helped a lot of people. It also carries its own risks (possibility of line infection). Orals also have led to successes.
There may be a combination of orals or injections that will help you, so don't despair that you're missing the only chance for recovery if it turns out that you can't afford IV.
I would be pushing a lot harder to find a way to get IV if it always worked, and if I weren't already improving on orals.
I want to kill this stuff if I possibly can, but I would rather try the much cheaper and less risky route first and see if it works (which so far, it is).
If it seems to stop working for me in the future, I will ask my doctor or another doctor if they think IV would be worth the money and the risk. I'm certainly not anti-IV. But there is little certainty anywhere with Lyme & coinfections treatment.
If you have health insurance, they may cover IV abx for a month or two.
Posted by 2young2die (Member # 25434) on :
See if your llmd will teach you how to mix the drug and infuse it yourself. My drug coverage pays for the drug but my insurance won't cover home care after 4 weeks so I got a picc line and am doing the infusions myself. I still have to pay for the iv supplies but I was dxd with als so I had to try something. Luckily, it seems to be working. Yeah!!!!!
Posted by 4Seasons (Member # 14601) on :
We use Infuserve America in FL and they are so helpful and (relatively) inexpensive. I am doing IV Rocephin for $39/day, which is about what some people spend on Bicillin.
I do the infusions myself and have a nurse friend change the dressing weekly. I figure after over two years of orals and no improvement at all it is worth trying for 4-5 months.
They will bill your insurance and for some reason they do reimburse a little bit for the supplies, but not the drug.
My LLMD told me recently that Dr. B went through all of his charts and found that the patients who did IV were more likely to get better, particularly those with musculoskeletal problems.
Posted by Hoosiers51 (Member # 15759) on :
Just so everyone reading this knows, Bicillin doesn't have to be that expensive...you can get the "international" version of it for much cheaper than what 4Seasons is referring to. The downside is that the non-U.S. version clogs more while injecting, and I imagine that that would be a hassle. I'm not sure on how the clogging is supposed to be handled....if you need to pull the needle out and reinject, or what.
That has nothing to do with IV though, just didn't want people to think Bicillin injections had to be expensive.
Posted by Marrit (Member # 25454) on :
The clogging might be due to fillers. How do you know what you're injecting? There's a reason it's cheaper ...
Posted by migs (Member # 16496) on :
Bicillin is the cheapest abx I ever used...just don't buy it in Canada or the US.
4 shots a week was about $8 a week Canadian buying in Mexico.
As for IV, I know you can also buy IV drips or boxes of powder in pharmacies in Mexico or Europe for very cheap but you need someone to give you your IV, unless you are very skilled.
Posted by momofthree (Member # 19490) on :
Please check with hometech-rx.com They will work with your insurance or without insurance. Dr. B is on their board trying to help lower the cost of our drugs.
Hometech supplies my rocephin, all supplies (saline, heprin, alcohol swabs and bandages, and they will provide a nurse to come to your home and do bandage changes.
This is american medicine and an american company. Cost is cheapest out there under $25 a day for me.
Posted by maritzap (Member # 11146) on :
We are trying to fund our daughter's iv treatment as she has been on a variety of oral abx and herbs, and other alternative treatments now for over three years. I sent an email to hometech-rx over 2 weeks ago and still have not heard back from them. I have called a variety of home infusion companies that have been very friendly and helpful, but the reality is that if you want your drugs from a US company you will pay exhorbitant prices. We are still looking for options to make this happen for our daughter who deserves to have her life back, but paying $5000 or more per month is seeming like our only option right now. She is now 18 years old and even if she goes for medi-cal or medi-caid or ssi which all take forever to get approved then they still won't pay for treatment since the IDSA determines the treatment. Since we are self employed, our insurance company won't allow us to increase our coverage which would help pay for the iv costs etc, and we cannot purchase coverage thru another company due to her pre-existing condition of lyme!! Even with Obama's new health care plan we will have to pay far more for more coverage that won't even pay for her iv drugs or home health care needs for iv. Our only choice is pay and hope it helps or don't pay and hope it helps. What should we do?
Posted by MariaA (Member # 9128) on :
It shouldn't be that expensive. I priced Rocephin and other IV drugs and supplies at Infuserve and the prices are much, much cheaper than this $5k/month you're talking about (ie I could get everything for something like $700/month if I do my own care, which my LLMD was supportive of).