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Testing for co-infections

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Posted 12/10/2012 10:33 AM (GMT 0)
While we're in the process of finding an LLMD (hopefully we'll make progress on that today) and getting my daughter in for an appointment, I'm thinking I ought to ask her GP (who diagnosed the lyme) to order some tests to look for co-infections. It seems there's likely to be a wait for the LLMD and we may have to do quite a bit of traveling so it would be good to use the time and travel well by being prepared with as much information as possible when we do have the appointment. My daughter's GP admits knowing little about lyme so it's helpful to go in with some idea of what we're looking for. I have read the list of commom co-infections and symptoms but can anyone tell me what type of tests are a good start? Many of the symptoms seem to match my daughter's (and lyme in general) so I'm not sure where to start.
Posted 12/10/2012 12:53 PM (GMT 0)
I wish I could give you more specific info on the types of tests, but I'm still waiting for my first appt with an LLMD.

I just want to say I think it's great your daughter's GP is offering some help! Unfortunately my docs don't think it's Lyme, so now I wait. I scheduled my appt with the LLMD several weeks ago, but wasn't able to get in unt Feb. 6th.

What are some of her main symptoms? I know that based on my own research I feel certain I have Bartonella as a co-infection. Any ideas in her case? I just thought that might help you get closer to finding the appropriate tests to ask for.

I hope you won't have to travel too far. I feel pretty lucky to have found an LLMD that's only 3 hours away, and even more lucky because he actually accepts my insurance. I'm counting down the days until I see him!

Have you found LLMDs in your area yet? Good luck to you and your daughter. I hope she gets well soon!
Posted 12/10/2012 12:53 PM (GMT 0)
I would call Igenex and see what they recommend. Then get your doctor to sign off on having a test sent there. I don't think it makes sense to use labcorp or any of the big "standard" labs for co-infection testing. Most LLMD's will order tests if necessary, but they primarily treat based on symptoms. Especially if you already have a positive test for Lyme. It's very unusual to have pure Lyme in a chronic stage. You may not need tests at all for some doctors.
Posted 12/10/2012 1:08 PM (GMT 0)
This is really helpful guidance. Thanks so much Summer!
Posted 12/12/2012 3:40 AM (GMT 0)
I agree w/ summer. Call Igenix and see what they recommend and have her PCP sign off on it. That's great that you have a PCP that diagnosed the Lyme Disease!
One thing though, my LLMD told me that the co-infection testing is often inaccurate (false negatives). I displayed most of the symptoms of Bartonella so she put me on Rifampin for Bart. w/o testing me for it and I have noticed significant improvement.
The other thing to keep in mind is, even if she does come back positive for co-infections, her PCP will not know how to appropriately treat it. Although, you could go ahead and use herbals for co-infections while waiting to see a LLMD.
What state are you in? Have you already found a LLMD?
Posted 12/12/2012 12:29 PM (GMT 0)
Thanks all for your feedback. I haven't checked in as of late cuz I'm struggling to keep all the plates spinning while being available to my suffering kiddo, researching, getting and reviewing med records and so on. My daughter been herxing (I think that's how you say it?) since starting antibiotics this week and she's so weak and tired and and her muscles and joints just hurt so badly. Sometimes she's nauseous and other times headachey and sometimes both. She's just sick of being sick and we're just getting started. I remember someone else saying that recently and I could relate (for my daughter).

I have no idea what co-infections my daughter might have yet but now that we were able to find an LLMD just an hour away and he had a cancellation we're going to fill this Friday!!! we're just going to wait to see where he recommends starting. This feels like progress and I'm hopeful we get a good feeling about him.

Thank you so much for all your support and I'll do my best to return some helpful information when we have more experience with some things that were helpful for my daughter.

 

Posted 12/13/2012 1:51 AM (GMT 0)
That is wonderful that you're getting in to a LLMD on Friday!!! Best wishes!

Make sure that your daughter is detoxing. Most helpful to me is doing all of this at one time (w/in a 1/2 hr.)- epsom salt, hydrogen peroxide foot bath, chug water w/ lemon, drink Alkaseltzer Gold, and then take a Benadryl and try to sleep. That combo. really seems to take the edge off of a flare or herxing for me.
Posted 12/14/2012 4:04 AM (GMT 0)
Thanks for the support! My daughter seems a little like herself today. We hope for the best tomorrow.
Posted 12/15/2012 4:49 PM (GMT 0)
ConcernedMom,
Yes, you did say that right - herxing is what we call it. It's short for 'The Jarrisch-Herxheimer reaction'. It's when the toxins are overwhelming the body and symptoms increase because of it.

Please be sure that your daughter is doing all that she can to help her body detox - dry skin brushing, detox soaks, drinking at least 64 ounces of water (with lemon if she doesn't have issues with muscle cramps/spasms/twitches).

You could have her start on ginger caps for her nausea - that's what I use and it works well. I can even now read while hubby drives!!
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