HealingWell
Search Close Search
☰

Prescribing IV, experiences

Support Forums
>
Lyme Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 10/25/2022 10:20 PM (GMT 0)
Do MDs have the privileges to prescribe IV over state lines? Has anyone done this or experienced this? I’ve had a hard time finding an answer to this question.

Also, what experiences have people had with IV?

With the state of my gut and MCAS I am not tolerating any of the oral treatments very well and may need to do IV but because of where I live it’s been especially hard to find a way to make it happen…
Posted 10/25/2022 11:45 PM (GMT 0)

Gettan said...
Do MDs have the privileges to prescribe IV over state lines? Has anyone done this or experienced this? I’ve had a hard time finding an answer to this question.

Also, what experiences have people had with IV?

With the state of my gut and MCAS I am not tolerating any of the oral treatments very well and may need to do IV but because of where I live it’s been especially hard to find a way to make it happen…

I wasn’t able to do IV abx when I was being treated at Dr J’s because he wants you back at the office quite regularly.
The cost would have been prohibitive.
In addition to having to fly to DC every couple of months (he wants to monitor your reaction in person for each antibiotic you take - and there are a few - not just one IV abx.)
The cost of several trips there plus I would likely have to hire a nurse to administer them for me. And also the cost of the abx on top of it all.

Thousands of dollars over several months.

But - he said he wouldn’t recommend IV abx anyway because he was confident I could heal on orals.
Posted 10/26/2022 1:42 AM (GMT 0)
IV's should be used to treat only the most serious cases of Lyme Disease, or for people that cannot tolerate any oral antibiotics. Also make sure your Health Insurance plan will cover up to six months or more of treatment. Otherwise it is not worth the effort and risks.

I was on IV's for 16 months with little to marginal results, and would not do it again knowing what I've learned over 12 years of aggressive abx treatment.
Posted 10/26/2022 5:34 AM (GMT 0)
i had good anti inflammatory effects from pulsing rocephin for over a year . my old llnp did order it from infuserve america in florida for me , and i opted for a smart port over a picc line , which i still use .

fwiw burrascano recommends a minimum of 6 months iv abx for heart or neurological involvement
Posted 10/26/2022 8:54 PM (GMT 0)
If you’re chronically sick with Lyme and Co, the effective IV treatment you’d want to do would be with multiple antibiotics and regular MDs would rarely if ever prescribe that.

I had to do IV for 7-8 months because of the debilitating condition I was in, I think it’s best to evaluate your situation with an LLMD to see if IV is necessary for your situation because it will be very costly. My gut was also a mess with histamine issue too. I was having extreme symptoms such as seizures etc. which is what led me to doing IV abx, I am now on orals

You’d have to look into certain Lyme docs who prescribe IV multiple antibiotic therapy or else I think you’d be wasting time and money.

A month of rocephin won’t fix someone with Lyme and Cos

I know of a few Lyme docs who prescribe IV treatment, one being Dr. J. I also know another in New Jersey.
Posted 10/27/2022 6:15 PM (GMT 0)

tickbite666 said...

I was on IV's for 16 months with little to marginal results, and would not do it again knowing what I've learned over 12 years of aggressive abx treatment.


When you were on IV therapy was it with multiple antibiotics? Or, do you remember the protocol you were on?
Posted 10/27/2022 6:18 PM (GMT 0)

bluelyme said...
i opted for a smart port over a picc line , which i still use .


Did you get any insurance coverage for the port? If I end up doing IV that would be my hope — to use a port over the picc line
Posted 10/27/2022 6:23 PM (GMT 0)
Thanks everyone for the responses and feedback. It’s helpful to know more about this.

IV is definitely not my first choice of treatment and in some ways I feel like I’ve been putting it off for years because I didn’t want to do it and because I wanted to believe that I could get better without it — despite the fact that several LLMD’s have strongly recommended IV in my case — but now years later I’m still very compromised and wondering if what I need to do is IV. I haven’t been able to work since 2015 and while funding IV treatment is daunting it also seems like at some point the cost of being debilitated and unable to work is greater than the cost of doing IV. Of course it’s a risk and I don’t know what the final results would be…

I have made some improvement on other treatments but some things have also gotten worse, maybe just from how long and how severely I have been debilitated by these diseases. My current LLND has recommended IV from the beginning but she doesn’t have the prescribing privileges to order it in the state that I am in. Which is partly why I was wondering if MDs have the privileges to order IV across state lines. In any case I may be looking for another doctor because I could use some fresh ideas…

Also, I didn’t think there was much of a chance of getting Insurance coverage after one month of IV – has anyone gotten coverage beyond the one month?
✚ New Topic ✚ Reply