Dr S IV abx protocal?

[lor]

Hi,
My LLMD said he could put me on Dr S’s IV abx protocol. Does Dr S, from Ida Grove, help other dr’s? My Doc said he could have home nursing come in and give it and get it covered by insurance?? Has anyone else gone this route? I emailed Dr S, yesterday and asked him if my Doc could call him and get the protocol. Is it 5 days of Clindamysion, and then minocylin 3 days a week. And then IV Clindy one day a month after? Do I have it right?

Any in put would be appreciated.
❓
Thanks
lor

[A Friend]

Hi Lor,

Dr. S in Iowa works with other physicians. I went there every 6 months for 2-1/2 years.

In order for the IVs to be covered (at the time I received them there), was to have a positive lab showing an infection that the treatment of the IV abx was approved (by the FDA, I’m assuming).

When I was there at the hospital as an outpatient for the IVs, I had to pay for them. When I later was thinking about this not being covered, I call my health insurance contact and asked her why it was not covered. By this time I had received information that the lab was positive. The health insurance lady said it should have been covered, and they mailed me a refund (just in time for Christmas shopping!). After this time, it was always covered.

Hopefully, there is a lab report showing whether you are positive or negative for a condition treatable by IV. Dr. S generally always had that test drawn at the hospital the very first morning patients arrive.

Good luck

[Eileen]

Hi Lor,

When I was on IV yrs. ago., my LLMD out-of-state dr. initiated IVs through my local PCP. PCP took over working with other dr. A home infusion company took over and it didn’t cost me a penny; of course, it depends on your health insurance.

Hope this helps.

Eileen

[Maz]

Hi Lor,

Is your LLMD using Infuserve America for your IV clindamycin? Just wondering, because if so they supply the self-infusing IV bottles that you can do on your own at home once the doc inserts the peripheral line for you. They also provide huge discounts for LLMDs. I just got 16 bottles of IV clindamycin (900mg), along with 4 extension kits, 20 heparin and 30 saline flushes for $279. My LLMD charges $45 to insert the IV in his office. So, it’s pretty affordable even if insurance won’t cover it. For just 10 IV bottles and the requisite supplies, the cost would be around $200. I’m not sure if Infuserve would just send out 1 or 2 IV bottles per month, though?

I actually do the 5 day series (900mg BID) once per month and then 900mg BID one day per week in-between. I buy the 16 bottles for my month’s supply and freeze the additional 6 for the following weeks. IV clindamycin can be frozen for up to 8 weeks or just refrigerated for up to a month. My IV protocol is a little more aggressive than the once per month protocol that Dr. S. often recommends after doing the initial 5 day series. There are many ways to do this and it really depends on individual tolerance, too. You’ll figure it out, once you know how you fare after your initial 5 day series. Some people only do the initial 5 day series and then booster 5-day series every 6 months or annually or just to knock out flaring (as per Carol Lange’s story in Scammell book).

The Charing Cross trials did the IVs in the following manner:

http://www.researchgate.net/publication/7308039_Single-blind_randomized_trial_of_combination_antibiotic_therapy_in_rheumatoid_arthritis

So, lots of potential permutations with the IVs….

[lor]

Hi,

My LLMD seems to think he will get home nursing to come in and do the IV’s, with my insurance paying (BCBS)?? So I was hoping I wouldn’t have to buy anything separate?? Am I dreaming?? Thanks for the info, I am betting it will not be as simple as I was hoping.

Do most people get good responce with the IV Clindy??

lor

[Maz]

@lor wrote:

My LLMD seems to think he will get home nursing to come in and do the IV’s, with my insurance paying (BCBS)?? So I was hoping I wouldn’t have to buy anything separate?? Am I dreaming?? Thanks for the info, I am betting it will not be as simple as I was hoping.

Do most people get good responce with the IV Clindy??

Hi Lor,

Response to AP, whether oral or IV, is unique to each person. For some it gives a tremendous boost, for others, they don’t notice much difference. Again, probably depends on pathogen load and it is possible for varying degrees of herxing to occur.

Whether or not they are covered, will likely depend on how your LLMD codes the IVs for insurance. Most LLMDs don’t take insurance, so don’t usually go thru insurance for anything and patients have to make their own claims for reimbursement. If you tested positive for mycoplasma and he codes it for this infection, you may stand a good chance getting your IVs covered, for instance. Just depends on your carrier and coverage, I think. When I had BCBS, I got a letter from them telling me they adhered to the IDSA treatment guidelines and would not cover further abx for my Lyme.

With a home infusion company, they should come with all the supplies needed to your house.

[lor]

HI Maz,
Did you have to have a port put in or do they just do the IV in the arm?
Thanks
lori

[Maz]

@lor wrote:

Did you have to have a port put in or do they just do the IV in the arm?

Hi Lori,

For the 5-day series, I just have a two inch catheter put into the crook of my arm in my doctor’s office (takes about 2 mins) – a peripheral line – which is covered with a small tagaderm band-aid and has a 12 inch extension line attached so I can do the infusions myself. There are simple instructions on this page for self-home infusions:

http://www.infuserveamerica.com/index_files/Lymediseaseeclipsepump.htm

The catheter remains in my arm for the full 5 days and I just cover it and wrap the extension line with a self-adhesive ACE bandage in-between IVs. I also bought a plastic arm cover from Walgreens which I tape at the top and bottom so I can take baths/showers during this time. I’m actually doing a 5-day series that I started yesterday…would send a pic to you, if the system accepted pics. I’d be happy to do this by email, if it would help in any way.

If insurance isn’t covering IV clindamycin, Infuserve America provides a really inexpensive way to do this…their mission is to assist Lyme patients as cost-effectively as possible. I think LLMDs probably have a cost-cutting deal with them, as they are a Lyme infusion company and LLMDs who do IVs will usually insert the line in their office so patients can then deal with it all independently at home without any added costs. My doc just calls through the order to Infuserve. Infuserve calls me to confirm the order and takes my credit card details, then they ship the IV bottles and other supplies needed overnight to either your home or doc’s office. FedEx notifies you when it’s being shipped and Infuserve also sends confirmation of the credit card transaction. The IV clindamycin can be kept at room temp for two weeks, in the fridge for 4 weeks or in the freezer for 8 weeks.

When I have the shorter one-day IVs (morning/evening one day per week in-between the monthly 5-day series), my doc just puts in a smaller 1 inch catheter. I don’t feel any difference with either, but the longer one is really to help prevent it being accidentally tugged out, I think. Having the catheter installed is no more painful than having blood drawn.

It’s really simple to just pull the line at the end…not at all painful and I just cover it with gauze and a bit of tape after I pull the line, just as when blood is drawn.

If doing home IVs isn’t something you want to do on your own, I believe some Walgreens locations have a home infusion service. It all adds to the costs, though, unfortunately:

http://www.walgreenshealth.com/wagclient/consumer/servicesandsupport.jsp?navSelector=Infusion+Services&leftnavpage=is&page=services

Hope this helps, Lori…really depends on your LLMD and how they want to do this. An experienced LLMD is pretty conversant in handling the home IV process. If you’re having long-term IVs, however, a port may need to be installed, as peripheral lines can become infected if left in for longer than 5 days or 6 days.

[A Friend]

@Maz wrote:

@lor wrote:

My LLMD seems to think he will get home nursing to come in and do the IV’s, with my insurance paying (BCBS)?? So I was hoping I wouldn’t have to buy anything separate?? Am I dreaming?? Thanks for the info, I am betting it will not be as simple as I was hoping…..

Hi Lor,
……….When I had BCBS, I got a letter from them telling me they adhered to the IDSA treatment guidelines and would not cover further abx for my Lyme……..With a home infusion company, they should come with all the supplies needed to your house.

Maz, Lor, All,

In January 1997, I was taught a lesson about how “to think outside the box.” Bear with me, and let’s think together.

Am wondering “what if” Lor has a lab report showing her positive for a specific organism(s)… and there is an FDA-approved effective IV drug to treat that organism…. is it possible that use of this drug in an IV would then be covered… at the period of time she receives the IVs? (In essence that is what happened in my own first experience with IV’s in Iowa. The claim was submitted by the hospital as “treatment for RA diagnosis” (I had just that morning had the blood draw to be sent to Dr. Brown’s old lab for mycoplasma testing, so they couldn’t put the specific organism being treated.) Even though the IVs given twice that day and the following 4 days was the right one, the hospital had determined that the IVs would not be covered. However, when it was later confirmed by lab report that during that 5 days of IVs I had existing mycoplasma infection, and this was FDA approved treatment for the mycoplasma but not approved for treatment for RA, this was reversed and BCBS sent a refund.

So, am thinking, Lor, that if you already have confirmation of the type infection you have, and if there is an approved IV medication for treatment of this infection, might IVs using this be effective and be approved?

I consider Maz the expert on this Lyme subject… but thought it might be worthwhile to “brainstorm” instances of how (perhaps) a valid claim for IVs might be submitted, and (perhaps, as in my own case) the IVs Lor would receive might also be covered — and not just use a generalized diagnosis for treatment of “Lyme Disease.” I’m sure others have thought of this already, but wanted to mention it, just in case.

[Maz]

@A Friend wrote:

So, am thinking, Lor, that if you already have confirmation of the type infection you have, and if there is an approved IV medication for treatment of this infection, might IVs using this be effective and be approved?

I consider Maz the expert on this Lyme subject… but thought it might be worthwhile to “brainstorm” instances of how (perhaps) a valid claim for IVs might be submitted, and (perhaps, as in my own case) the IVs Lor would receive might also be covered — and not just use a generalized diagnosis for treatment of “Lyme Disease.” I’m sure others have thought of this already, but wanted to mention it, just in case.

Hi AF,

I love the way your brain works to brainstorm and try to help others! 🙂

In the case of a CDC positive case of neuroborreliosis, the approved IV medication is generally Rocephin (aka ceftriaxone). If there are documented coinfections, like severe, life-threatening babesiosis, then other IVs may be approved (such as flagyl or clindamycin). Generally speaking, though, clindamycin wouldn’t be coded for borreliosis, as it’s just not the “standard of care.” Also, IV rocephin is generally administered long-term (1 to several months) and requires a chest or upper arm port. There are risks associated with ports (systemic infections) that are much less likely to occur with short-term peripheral lines, but in the case of neuro-Lyme or just really severe cases, the port is considered a necessary risk in terms of risk/benefit.

LLMDs are using clindamycin more and more now (as a non-standard of care), though it was not considered to be one to use only a few short years ago. They are finding it really helpful for Lyme patients, though, for shorter-term use. It’s just not generally used as a long-term thing due to the risks associated with c.diff. My LLMD was willing to try this for me based on the Charing Cross studies for RA and he’s now using it with many RA/Lyme patients in short spurts as I am doing, as a kind of IV pulse method. He’s been impressed with how well-tolerated IV clindy has been for all the patients who have tried it, as well as its efficacy, which confirms Brown’s findings.

I think the biggest prob with Lyme, AF, is that there is no standard of care past the highly restrictive ones described by the IDSA, which really only includes a max of a month or two of IV ceftriaxone for neuroborreliosis. After this time, the patient is considered “cured.” This has long been a part of the whole Lyme debate. 😥

Here a couple studies on the opposite ends of this spectrum of debate:

http://www.ncbi.nlm.nih.gov/pubmed/21941449

http://www.ncbi.nlm.nih.gov/pubmed/16012005

Insurance companies adhere to the IDSA/CDC guidelines for the treatment of Lyme, so getting long-term IVs covered can be a real nightmare. Most wind up paying out of pocket.

[A Friend]

Maz,

Thanks for your effort at educating me. I read both links, plus some of the extended links inside one of them. Most or much sounded encouraging. Wish I had a “tad” more medical IQ (lol) to better understand what those said between the lines. What it did was make me think I need to get back on my AP Minocin, because I’m not sure my mental functioning/reasoning is as good as it was before I discontinued the oral AP; and, it’s been a number of years since I’ve had IV’s. The improvement in mental functioning (if I’m interpreting the links correctly) may be reason enough to at least add one Minocin on MWF. Do you know — or have any comments — about use of nondenatured whey along with pulsed Minocin on MWF? I just may play guinea pig for six months and see if I notice any difference. Of course, I still remember that dairy and minerals need to be taken well away from abx. Again… it appeared in the controlled studies links you pasted, improvement in these areas were noted using the abx’es mentioned.

Thanks again to you, one of my favorite teachers!!! 😀

[Maz]

@A Friend wrote:

Do you know — or have any comments — about use of nondenatured whey along with pulsed Minocin on MWF? I just may play guinea pig for six months and see if I notice any difference. Of course, I still remember that dairy and minerals need to be taken well away from abx. Again… it appeared in the controlled studies links you pasted, improvement in these areas were noted using the abx’es mentioned.

Hi AF,

Did you have any specific thoughts/questions regarding the above? I consider *you* to be one of my teachers, so you likely have much more knowledge about non-denatured whey protein than I! 😉

[lor]

Thank you all for your responces. I have never had a positive lyme test. And have never been tested for Microplasma. My LLMD, seems to think my BCBS will pay. He called yesterday and was going to try to set it up with home nursing. I told him that my insurance has to pay because I can’t aford it other wise. He didn’t think it would be a problem and is checking into it for me. He is such a great Doc. When I emailed Dr S about this a few months ago, he said I shouldn’t have a problem with BCBS.

You people here are so…………….. great. I printed out the info you all gave me.

Thanks a bunch
lori

[Maz]

@lor wrote:

My LLMD, seems to think my BCBS will pay. He called yesterday and was going to try to set it up with home nursing.

Lori, thanks for checking in and please do come back and let us know how you get on with getting your IVs covered by BCBS and, if it can be set up with home nursing, all the better! There will no doubt be many newcomers here waiting to here how your doc manages to set this up for you. Everyone’s experience seems to be different with this stuff and every carrier works differently, so fingers and toes are duly crossed for you.

I’m putting it out there for you that it will be a breeze and you’ll be all set in no time. 🙂

[lor]

Hi all,

Kinda to keep anyone interested informed. I went to my reg. Dr and gave him the info about IV abx, that Dr S uses, and asked if he would put me on this Protocol. Said I was going to go to Ida Grove if not. He said YES??!! He wanted me to call Dr S and ask exactly how much clindy and how to bill so insurance would pay. So I did this just now and faxed the info to my reg Doc. What nice people in Ida Grove. Told me if my Doc needed to call Dr S that Dr S would be more than willing to talk to him. My Doc plans for me to get the IV’s 2xday as out patient at the hospital 10 min. from my house. Will it really be this simple???

Wish me luck, and I will check back in.

lor

[Author]

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