My first IV at home

[Maz]

[user=152]mtgas[/user] wrote:

Sorry to butt in here but how did you go about getting your IV treatment done at home? I know Dr. S is more than willing to prescribe them but I don't know where to begin.

 

Hi Michelle,

JB is an expert at home infusions now and has the best advice for you. I just remembered a thread from a while back about this you might find useful, too, if you can't find a home infusion service locally:

http://www.rbfbb.org/view_topic.php?id=1522&forum_id=1&highlight=lyme+infusion

QMedRX is actually a Lyme patient home infusion service and they say they serve 40 states. They also list “autoimmune” conditions as being one of their specialties.

I just took another look at their website and they offer some great patient info on things like “flushing catheter lines,” etc. So even if you don't use this particular home infusion service (they may be costly) there may be some helpful information for you at their site.

All the best, Michelle, in finding the best home infusion service for you!

Peace, Maz

[kat]

I would do it a bit differently. I would not contact your insurance first, especially because you say that they will cover it. They really can't tell you much until they get a doctors order. So, let the doctor write the script, call the infusion/IV place you will use and let them contact your insurance to get the necessary approval.

I also would not use an infusion center through a hospital as (in my case anyway) they are much more expensive than a home infusion place. I would look for 1) a home infusion company or 2) a home health care company that does home infusion (many of them do).

If your insurance  has an in network policy, go to your directory and look for a home infusion or home health company that is on your plan. The one I used is owned by Walgreens and is nationwide, although not every town has one. Here is the website, if it helps any:

http://www.optioncare.com

Just my opinion, worth price charged. :roll-laugh:

[mtgas]

[user=266]JBJBJB[/user] wrote:

Michele,

First you contact your insurance and make sure they cover the treatment. Second you will need to contact your local hospital and see if they have any “Home Infusion” unit. If they don't, you contact cancer care unit and see if they do. Then you go from there. JB

Thanks JB! I wasn't sure if Dr. S 's office took care of all the details for you or not & now since he has retired from his general practice, I was even less certain. I am going to look into it further. I hope you feel better real soon!

Michelle

[mtgas]

[user=27]Maz[/user] wrote:

[user=152]mtgas[/user] wrote:

Sorry to butt in here but how did you go about getting your IV treatment done at home? I know Dr. S is more than willing to prescribe them but I don't know where to begin.

 

Hi Michelle,

JB is an expert at home infusions now and has the best advice for you. I just remembered a thread from a while back about this you might find useful, too, if you can't find a home infusion service locally:

http://www.rbfbb.org/view_topic.php?id=1522&forum_id=1&highlight=lyme+infusion

Hi Maz,

Thanks for finding that thread & for the information!

It's interesting how that company mentions they specialize in autoimmune diseases using infusions. I have yet to find a local doctor who will treat me using the antibiotic protocol.  It just amazes me. :doh:

Michelle

[mtgas]

[user=420]kat[/user] wrote:

I would do it a bit differently. I would not contact your insurance first, especially because you say that they will cover it. They really can't tell you much until they get a doctors order. So, let the doctor write the script, call the infusion/IV place you will use and let them contact your insurance to get the necessary approval.

Hi Kat,

Thanks for your input. I think I am going to follow your advice since I checked my insurance coverage online and they do cover home IV therapy, which I think it something new (yay!)

I also found a few local IV places that are in-network so I will contact them directly to see what they will need from my end and then go from there. 🙂

Michelle

[Andrea]

Well, they came to put the mid-line in and guess what?  Tried it twice and my veins would not cooperate.  First one didn't hurt so bad but the second one, ouch.  So, we put another perphial (sp?) in the back of my hand and hope that it last another 3 days. 

So with that said, I took my 3 dose last night and I feel much better this morning.  I could actually walk a bit better.  I was wondering with this protocol if I would ge as much relief as you guys.  He is trying the following protocol on me:

2 days of 300 mg, 2 days of 600 mg, 1 day of 900 mg and 1 day a week thereafter for 4 weeks of 900 mg.  I think he wanted to ease into it because of colitis being in my family background.  I know he was a bit concerned about the C diff. 

We'll see.  I'll keep you posted

[Andrea]

p.s.  about the insurance thing.  Mine would not confirm anything really without the RX from the doctor.  Once they received that they informed him of participating infusion companies and one was brought on board.  I really didn't have to do anything once I got the ball rolling.  Other than my veins not cooperating it's been a very nice experience with the home infusion and all the nurses have been very accommodating.

I will warn you though that my doctor did not write it up as RA on the RX as the diagnosis in order to get it through he wrote it up as what we thought was the underlying cause…..Pneumoniae Bacteria

[kat]

p.s.  about the insurance thing.  Mine would not confirm anything really without the RX from the doctor.

Exactly! It didn't do any good to talk to the insurance co until I had the orders from the doc.

[Parisa]

Andrea,

With treatment, your veins should improve so down the line hopefully the IVs won't be as much of a problem.

You're right as far as how the doctors have to prescribe things.  My husband gets IVIG for dermatomyositis.  If we tried to get it for Lyme disease, no way!  On the other hand, he is getting IV antibiotics for the Lyme disease also.  We are walking a really tight line but so far it's working as far as insurance goes.

[Andrea]

So how long did it take to notice a difference as to whether or not the IV's are working or doing anything?  I've had my 4th dose and I feel a wee bit better but not enough to be real excited about (although anything is better than nothing, right?)  What about everyone else……how long did it take and how much of a difference did you notice?

 

[kat]

Andrea, the first time I noticed a difference after day 3. This time it fluctuated a lot, as is pretty much normal. And no one is the same. You might not notice a difference until way after you are done, or part way through, or it may go up and down for you. I wouldn't worry just because you don't notice a huge difference yet!

I think everyone has that problem with insurance. I am lucky (oh really? lol) to have  reactive arthritis because at least the insurance looks at that as being caused by an infection. But I think it was the bronchitis that got me the approval for the IVs, not the reactive arthritis. I don't know what will happen next time we try, unless I have bronchitis again…….

[kat]

No that is not true, he is still doing IVs for people. He is currently on vacation for something like 3 weeks though.

I don't know what his current phone number is, possibly Lou at his old office has it. I know he has an email address that is posted around here somewhere………

[JBJBJB]

[user=379]Elaine son w/MCTD[/user] wrote:

I read a post from JB saying that Dr S could no longer prescribe IV's since he is retired.

Perhaps I said, “in case dr S could no longer prescribe IV because he's retired, I could always go up to Kat's doctor to get one”.

Kat is right. Dr. S is still doing IV and he will do it for as long as he can.

:JB

 

 

 

 

[daughter-sine sclero]

Hi JB

Well thanks to your advice about finding a home infusion therapy center and my moms wonderful Dr. F in Riverside she started her first day on Clindy IV,s which she will get a series of 8 every 3 weeks that is 7 days for each series of IV,s. So we found the infusion center and had our first one today. The nurse walked me through it because I will be doing the IV,s and she will go back Thursday to change it out. Of course my mom was very worried and nervous about me doing it but it really cuts out a huge cost so we are going to give it a try. They gave wonderful instructions and if we need a nurse there is one available 24/7 to call or come over to check on her if we needed it. So far our only concern is that it is a little red where the needle goes in and she is saying that it really hurts very badly. I don,t know if it hurts from being stuck with the needle or it is starting to get a n infection. My mom is prone to get staff infections so that is my only concern and since I really don't know too much about it I didnt know if that was normal or not. Any advice or insight into this would be GREATLY APPRECIATED!!!! I will post every day about how it is going with our home IV,s. NOW WE ARE READY TO KICK SD IN THE _________ !!!

Take care ….Nicole

[Kim]

Hey Nicole,

Way to go on pushing for the IVs for your very sick mom. 

Please have the nurse check out the redness at the site asap.  Mine had to be pulled quickly because the vein couldn't take it, which meant they had to keep finding new veins using a small butterfly each time.  If they find a vein that can handle the needle it helps to wrap that arm in warm/moist towels to keep it flowing during the infusion.  If your doctor hasn't done so already, he can prescribe a numbing cream which helps.  The only problem is that you have to put it on 30-40 minutes ahead and when you don't know where they're likely to go, it's a guess.

Sending you both a big hug and best wishes for making this work.

kim

[Author]

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