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2nd LLMD appt, some test results

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Posted 4/12/2016 10:40 PM (GMT 0)
We just got back from the appointment. Some test results were in, and the rest we'll get when we go back in 2 weeks.

Turns out my sister is positive for mycoplasma. I was kind of surprised by this one--looks like I have more reading to do.

And her CD57 was low (=33).

Tests for Bartonella were negative and done by Quest. Since everyone here has informed me on how difficult it is to detect Bartonella, we're just going to continue doing Buhner's protocol for that.

Also, we never did the muscle testing on the supplements and we're not sure why. We had bags and bags of our stuff, but she never mentioned it, and since I was actually feeling a bit sick during the appointment, neither did we. So, it looks like we're not going to learn anything more about that.

Post Edited (LauraJK) : 4/12/2016 4:49:15 PM (GMT-6)

Posted 4/12/2016 10:59 PM (GMT 0)
Hi Laura -

Well, it's good to have a little information. SO often with this complex illness, we're slowly peeling the onion. Mycoplasma is pretty common w/ lyme but it's good to know for sure. Another approach to dx bartonela is to do a Fry Labs test--probably $200-ish but sounds like a good idea to continue treatment for now.

There are differing opinions about what CD57 implies. I think most MDs would agree that a low CD57 level suggests a struggling immune system and would also agree that 33 is low (but few would agree on what it should be). Some lyme specialists use a low number to help dx lyme, others don't think it determines anything about lyme. My CD57 was 37 when I started, a year after treatment it's 43. Two years after treatment it's 47, despite significant improvement in my GI (70% of your immune system IS your GI) and I'd say moderate improvement in my overall health. So I don't know what it all means for me. But it's good that you have a baseline level for her moving forward.

Hope you're feeling better, too.

-p
Posted 4/12/2016 11:12 PM (GMT 0)
Laura, first I am sorry you weren't feeling well. That is so hard to care for someone when you yourself don't feel well. God bless you for still going.

I did not go for testing. Too unreliable and I knew the cost could be spent on better food and treatment. But that is me. Cheapskate. However, when it came time I treated for Bartonella and for Babesia, just as if I had them. Why not? The test so are very unreliable that it seemed like the only logical thing to do.

I don't think I had Bart because I felt nothing starting or stopping the Bart herbs. As for Babs, I took it for a bit and then quit and boy did I notice I had quit. So I started it right back up. I did not notice it when I started but maybe it was because I started so slowly? Who knows.

Like Buhner says, "Here is what is true: nearly every lyme person, again: nearly EVERY lyme person, comes up with their own treatment blend over time to fit their exact situation. There is nothing wrong in blending protocols. Most people do it one way or another. As I say over and over again, there is NO one way to health with lyme, use what works and discard the rest."
Posted 4/13/2016 12:58 AM (GMT 0)
You are a hero in my book, Laura! I really hope you can grab some "me" time (5 minute meditation maybe?)....your body and your spirit need it.

I made the same decisions PeteZa did about testing/treatment. I had some questionable (to me ;) herx symptoms on abx that made me wonder if I was dealing with coinfections. Because those symptoms overlapped with Lyme symptoms, my LLMD stuck with his Lyme Dx (I was CDC positive). He'd only consider a coinfection diagnosis with additional testing (surprise, surprise, I was negative with Lab Corp).
No thanks.

Mycoplasma is a very common infection - not just among Lymies. I'm sure you recognize that many people are walking around with dormant/asymptomatic infections....think chicken pox, EBV, etc.

You have a good feel for evaluating the symptoms your sister has and I think she'll benefit from your decision to continue Bartonella treatment.

I retained more facts after watching some of the Lyme Summit presentations and one of them is that there are over 30 Bartonella strains....and that's not counting Bartonella-like strains.

Buhner includes Mycoplasma in his coinfection book that also addresses Bartonella...

Best wishes to you moving forward!!! Please get some rest!
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