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Flying to see my LLND on Wednesday

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Posted 8/19/2014 1:07 AM (GMT 0)
So I'm flying all the way to see my LLND for a follow up appointment on Wednesday. 

Does anyone have any suggestions on what I could ask about, what I could get tested for, or if I should get any special kind of treatments during the appointment?

I am thinking about testing again for Borrelia, the Lyme Western Blot since the first time around I only had 41++ and I know that band is positive in a good chunk of the population because there is a antibody to a virus that crosses over with that one.  Or it is the first band to go positive.  BUT I also had a couple indeterminates.  My LLMD said my test result is "weakly positive" but positive with clinical symptoms.  My LLND wants me to get the CD57, and Louise suggested I get the Ispot Lyme test.  Any other tests I should get done?   I really want to get thorough Lyme testing done, because there is a very small chance I got ONLY bartonella.  Reason being is because of the way I caught this which was from another person, I know for sure whatever I got was transmitted from another person and not an insect.  People keep telling me Lyme can't be transmitted this way and that it is only usually present in tissues.  One thing for sure is the person I got whatever this is from DOES have Lyme disease and has an Igenex positive western blot.  So I was thinking maybe there is a chance I caught just bartonella?  I have however had way too many symptoms of Lyme though so I think it is Lyme, although I know many symptoms of bartonella cross over with Lyme.

Anyways.  Any suggestions anyone for tests, treatments, or things to discuss with my LLND on Wednesday?

 

Posted 8/19/2014 3:50 AM (GMT 0)
How about the c4a and mthfr? Are you coming to Seattle? Good luck!
Posted 8/19/2014 3:54 AM (GMT 0)
Are you seeing Dr C?


Good luck with your appointment!
Posted 8/19/2014 4:01 AM (GMT 0)
I actually am flying to Vancouver Canada. I live in Canada so ... Girlie, yes I am seeing Dr.C!
Posted 8/19/2014 5:18 PM (GMT 0)
lymepickle - I'm seeing him on Saturday. I'm so happy his office is open on Saturdays - that way my husband doesn't have to take another day off work for me.

Hope your appointment goes well and he has some good suggestions for you.
Posted 8/19/2014 5:30 PM (GMT 0)
Hi Girlie,

So far I am going to get the following 3 tests:

Igenex Lyme Western Blot IGG & IGM (to see if my antibodies ever did finally seroconvert after treatment).  --It's funny a Lyme test usually only goes positive AFTER treatment.  So it should be positive by now.

Ispot Lyme test.  I think so far this is the only way to determine if you are 'finished' treatment or have an active Lyme infection. 

CD57.  A Dr. C said I need to take to determine if it is time to come off antibiotics.  I'm still not coming off the antibiotics for awhile though because bartonella is proving to be pretty difficult to treat.  (Maybe as difficult as Lyme). 

I am trying to figure out if I need anymore testing other than this.  I would get a parasite test... But that is kinda awkward and uncomfortable test to provide a sample for.  (stool, ewww.)

I would get tested as well for bartonella.  But out of all these diseases bartonella testing is the least reliable.  And my symptoms are a definitive indication of a bartonella infection. 

Posted 8/19/2014 6:13 PM (GMT 0)
I hope this doctor is helpful to both of you! Let us know how it goes.
Posted 8/20/2014 1:06 AM (GMT 0)
Flying tomorrow! Anyone have anything for me to bring up with my LLND?
Posted 8/20/2014 1:07 AM (GMT 0)
hmmm, i wonder about that mthfr mutation. I might have that now though because I did 3 months of tinidazole... I hope not though.
Posted 8/20/2014 1:28 AM (GMT 0)
Lymepickle - maybe just see what Dr. C. suggests?

I was fretting over what testing needs to be done, what antibiotics I should switch to , etc. as well...but I've decided to just let Dr. C. tell me what I should do.

I don't know about you, but I'm already tired of having the responsibility of fixing myself. I want to hand it over to the Doc.
Posted 8/20/2014 10:11 AM (GMT 0)
I second the suggestion to test for the DNA mutations!! Essential info for all of us trying to detox and go through treatment. Helped me tremendously.

Good luck!

-p
Posted 8/20/2014 10:46 AM (GMT 0)
Good luck!
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