Marz
Frequent Contributor (1K+ posts)
Member # 3446
posted
I've recently started malarone for babesia which my LLMD prescibed.
I'm seeing my primary care nurse practitioner soon for a non-lyme related issue and wondering if I can not mention it when they ask what my current prescribed meds are.
I'm pretty sure that they don't think that it's possible to have babesia. She does know that I'm seeing a LLMD.
I had a positive for babesia through DNA Connexions and am guessing that they wouldn't consider that a reliable lab.
Yet, if I don't tell them about the malarone, it would feel like I'm lying in a way.
Posts: 1297 | From USA | Registered: Dec 2002
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hiker53
Frequent Contributor (5K+ posts)
Member # 6046
posted
If you have to get other medications you will need to tell the nurse to make sure there is no interactions between them.
Personally, I am for full disclosure, but my GP is pretty open minded even though he is ignorant about Lyme and co-infections.
Probably because I was in his office when I got a phone call from MD who tested me for Lyme and it was a positive test. So, he may be ignorant, but he does listen.
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8885 | From Illinois | Registered: Aug 2004
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posted
I would tell them. It can interact with so many drugs. (anything can)
Go armed with info on babesia if that would make you feel better.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
Ahh, the age of technology.
Regardless if you want to volunteerly tell your physicians what meds you are prescriped, they will still be able to access your complete med list through your pharmacy. If they choose to.
No sense lying but sometimes I omit a few things, as some docs ( the ones that are openly hostile to Lyme patients), can't handle the truth.
My med list changes frequently so it is conceivable I would make such errors.
The last Doctor I saw, didn't know what bartonella was so she goggled it and saw it was a TBI. I got the "judgement" look so I said " haven't you ever heard of cat scratch fever?" I ended up in E.R. a few years back with an I.V. antibiotic in my arm.
Most doctors don't know about TBI's. . . Some are willing to learn but the majority are not up to the task, unfortunately.
Hopefully, that will change soon !
Posts: 2977 | From Florida | Registered: Nov 2016
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
I agree with those above.
ABSOLUTELY, you should tell them. If they can't handle it that is their problem.
Not sure I'd take literature in with me as that seems to make them buck more than not.
If they question it you can tell them you'd be glad to share some literature with them or better yet, refer them to the treatment guidelines so they can see for themselves.
Here are the guidelines. Just for you cause you are special.
Here is some info on Babesiosis if needed too. Actually, this is the link that has most of the TB diseases listed on it with the treatment protocols so if the doc wants to learn they can click on the Babesia link themselves, and MAYBE they will check out some of the others too?
Marz
Frequent Contributor (1K+ posts)
Member # 3446
posted
It went well at the clinic today. My LLMD was formerly at the clinic and left for private practice for Lyme.
The nurse who reviewed my meds has the utmost repsect for my LLMD since she worked with her before she left, so she didn't bat an eye about the malarone.
The NP who saw me didn't comment except to ask if I was noticing that malarone was helping and then when she heard it was only 9 days that I was on it she said it would be too soon.
BTW, Tincup, the babesia info included in the Maryland site is excellent! Thanks.
Posts: 1297 | From USA | Registered: Dec 2002
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posted
Primary care docs need to know what is going on with us. I had to do a search for a new one when I came in with a Lyme dx, as my then primary doc would not accept the dx. My new one doesn't mind at all.
Posts: 13116 | From San Francisco | Registered: May 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Oh that's great Marz! Glad it went better than expected.
When the new doc said "too soon" I am assuming she meant it was too soon to tell if it helped?
If so, not really true. I see immediate relief when on Babesia treatment- the next day usually.
But, then the herx hits about day 3-5 and watch out and every 3 weeks or so after that, with a duration of less time each herx and a bigger improvement once the herx clears.
But, glad too that you are noticing improvement.
Don't let those goofy words stick in your craw, ok?
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
OH, and glad you like the Babesia info. I recently updated it and try to keep on top of it.
And another thought....
It may be possible the ND will be a touch cranky because you are on a "drug" rather than out in some field eating wild oats or whatever she wants you to try as an ND. In other words, you are not on HER protocol. (Nose up in the air too far perhaps?)
So maybe consider that? And once she is seeing more people she will be better next time? Hope so.
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