posted
I'm getting pretty frustrated. I initially thought we'd be giving the shots, but am getting scared off because it is painful and has to be given slowly.
This is for my 15yo who has hard time with pain. Her LLMD is in NYC and we are in Central Mass. Ideally I want to find a nurse who will give the shot for a few weeks, until I feel comfortable learning how to do it. But not in NYC!
Her PCP won't do it. Home infusion nurses can't do it -but are willing to teach me (but I have to actually do it).
Local cancer infusion center won't do it bkz it has to come from a doctor in their network.
Maybe 24hr clinics?
I guess this is par for the course for Lyme. racer
-------------------- Me - Igenex: IgM: 41IND, IgG: 39IND, 41+ but Plasmid PCR Positive Kiddo - after 1 year IV - positive Lyme culture (before IV: IgM:31,34,41,83-93 IND; IgG: 41+++, 66+) Posts: 133 | From CT | Registered: Feb 2011
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posted
Do you know of a paramedic who would be willing to give it to you?
-------------------- RI Posts: 440 | From New York | Registered: Sep 2005
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lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
My LLMD in the northeast wrote an order for a home health nurse to administer it. I am in another part of the country and that has worked for me.
posted
Those are good ideas - thank you. I think most medical types would be afraid of liability, i.e. what if she has a reaction etc.
I called the hospital infusion center. They will do it , if insurance approves 'lyme treatment' - but they need to provide their own meds. The problem is that I already received 10 wks of bicillin LA from the insurance companies 'specialty pharmacy'.
I guess my next call needs to be to insurance company - ask them how I am supposed to know how to do this - since they have 'approved' her treatment, they should approve administration of it, or teaching me how to do it.
thanks folks, racer
-------------------- Me - Igenex: IgM: 41IND, IgG: 39IND, 41+ but Plasmid PCR Positive Kiddo - after 1 year IV - positive Lyme culture (before IV: IgM:31,34,41,83-93 IND; IgG: 41+++, 66+) Posts: 133 | From CT | Registered: Feb 2011
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
You should have home-nursing coverage with your insurance co. If so, you LLMD's office would put in for a home nurse with your insurance. The nurse could come a few times to teach you; I don't think it's necessary for them to do it all the time.
When I was doing it, I had a friend, who is a nurse, come twice, once to show my husband how to do it, and another time to coach and observe him doing it. If you needed a third time, so be it. she did it pro bono, as she was a friend.
But you could find a nurse that you could pay a nominal amount to do it, if insurance doesn't come through. Although insurance should, if you have home nursing visits covered.
Ask the MA Lyme Support Group if they have suggestions of a nurse to use, if insurance doesn't do it.
Or you could go to the infusion center for 2 times and use their meds (assuming insurance pays for that now) and then use the rx that you received.
It's not so bad once you learn. Get the LLMD to rx Emla cream (numbing cream) and put in on for an hour ahead of time with a band-aid.
After the injection, a little massage over the area, a moist heating pad for 15 mins or so, and then walking around make all the difference, esp the heating pad. That way the pain is not so bad. It's manageable (of course, I'm an adult!).
A bad reaction right afterwards is very, very unlikely; it's slow release.
Posts: 3771 | From around | Registered: Mar 2008
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I called insurance to ask for 'health advocate' - they have a program which is not really that, called 'medical management'. I was always afraid to get involved with this type of thing since extended Lyme treatment is such a no-no with them.
Wish me luck - they are supposed to call within 48 hrs.
-------------------- Me - Igenex: IgM: 41IND, IgG: 39IND, 41+ but Plasmid PCR Positive Kiddo - after 1 year IV - positive Lyme culture (before IV: IgM:31,34,41,83-93 IND; IgG: 41+++, 66+) Posts: 133 | From CT | Registered: Feb 2011
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