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My mom's test results-update

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Lyme Disease
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Posted 6/5/2017 6:42 PM (GMT 0)
Hi everyone! Most of you know my mom's story, so we took her to the Stram Center where they sent a coinfection test out to a Galaxy Lab that they use. We just got the test results back, she tested positive for bartonella! She is already on bactrim for this, but to have the results come back POSITIVE feels so good!!!

Now is it safe to assume that this is 100% Lyme disease even without a positive Lyme test? (We haven't redone the Lyme test since the first one).

-Kari
Posted 6/5/2017 6:56 PM (GMT 0)
Kari - I can't remember the results of her Lyme test - but there were positive lyme specific bands, right?

(That alone is enough - combined with her symptoms - to diagnose lyme)

But, yes, the positive bartonella definitely backs up her previous diagnosis.

(You can also get bartonella from cats...but if there is no other infection involved or something else to reduce her immune function (like lyme) then it's usually self-limiting)

Bactrim is a good 'start' for bartonella while she's treating lyme...but it's not usually enough...Rifampin will most likely be needed.
There are fluoroquinolones for bart - and they are thought to be the most effective - but they do come with a black box warning - actually two - one for Peripheral neuropathy (which can be permanent) and one for risk of tendon rupture.

So, I would steer clear of those - Levaquin, ciprofloxin are fluoroquinolones that I know of.

You can be assured she does have lyme disease plus bartonella...
Posted 6/5/2017 6:58 PM (GMT 0)
Hi Kari -

It IS relief to have a positive test, isn't it? I'm glad you have results back.

Is it definitive for Lyme? No. A positive test for a coinfection is just one more piece to the puzzle. You can be positive for bart w/out having Lyme (since it is often carried by the household cat). But it is a piece of the Lyme diagnosis (along with symptoms - mostly, but also with reaction to treatment, exposure, response to bands on Lyme tests).

It also depends on who you're trying to convince. I know your mom has doubts but it's tough to get that definitive "CDC positive" test but as we've already shared - this doesn't mean she doesn't have Lyme.

Details, details.

So glad the picture is clearer though!

Hope you're doing well.

-p
Posted 6/5/2017 6:58 PM (GMT 0)
Bartonella itself can cause a lot of issues and can be trickier than Borellia Burgdorferi. If your original Lyme test wasn't through IGeneX I wouldn't put much stock in it. I think the bart treatment your mom is on will hit Lyme too (you mention bactrim but if I recall she's doing rocephin too?). How is she doing? Any more improvements?

I am being treated for Lyme/Bart and my protocol is minocycline/rifampin/bactrim/plaquenil.
Posted 6/5/2017 7:00 PM (GMT 0)
Girlie - Thanks! She tested positive on bands IgM 23, IgG 18, & IgG 66. I am already convinced she has Lyme, I have been from the beginning...but I'm hoping this test showing a POSITIVE for bartonella will give my mom the verification she needs to keep fighting (she's close to giving up).

I did read that bartonella could be transmitted through cats (which she has 2 of), but with the level of issues she has, being diagnosed with ALS....I would assume that the bartonella came from the same tick that was also most likely carrying Lyme disease.

-Kari
Posted 6/5/2017 7:02 PM (GMT 0)
K07 - No more improvements with the rocephin/rest of the treatment sad She is very discouraged and ready to give up. Not really ready to face losing my mom.

-Kari
Posted 6/5/2017 7:17 PM (GMT 0)

KariW93 said...
Not really ready to face losing my mom.

-Kari

Have you said this to her? Sometimes people will fight harder because of the people in their lives.
Posted 6/5/2017 7:33 PM (GMT 0)
Girlie - Yes, I have. She has told me I'm the only reason she's still holding on. That she's doing it for me. She really is in rough shape and I honestly don't know if she can beat this sad
Posted 6/5/2017 8:05 PM (GMT 0)
Thing is - will she feel any better stopping treatment?
maybe for awhile, but no guarantees...and the lyme and bart symptoms will continue to progress.
Posted 6/5/2017 8:49 PM (GMT 0)
Girlie- the thing is, it's not about the treatment. She's extremely depressed and does not want to live in general. With her breathing the way it is, she needs a machine to help her breathe 24/7, so basically her plan would be to go home on hospice care, be sedated, take the mask off, and die that way.....
Posted 6/5/2017 9:56 PM (GMT 0)
This is very tough Kari. I feel for her and you - it is no way to live. If she can just try a little longer. Pray for some kind of improvement that will give her the will to fight. I will definitely keep you both in my prayers.
Posted 6/6/2017 1:32 AM (GMT 0)

KariW93 said...
Girlie- the thing is, it's not about the treatment. She's extremely depressed and does not want to live in general. With her breathing the way it is, she needs a machine to help her breathe 24/7, so basically her plan would be to go home on hospice care, be sedated, take the mask off, and die that way.....

Oh, I'm so sorry.

I hope she can stick with treatment awhile longer and see some improvements.

She's on IV antibiotics still?
Posted 6/6/2017 5:30 AM (GMT 0)
praying for her . the will to live is what made the difference for auchwitz survivors . and lyme prison\ torture needs hope! once nerves heal her diaphragm may start working again , swollowing will get better ..ask for 6 months to see. again i have seen bvt work miracles
Posted 6/6/2017 12:49 PM (GMT 0)
Girlie - She's doing IV antibiotics 3x/week, IV Rocephin & now IV Bactrim. Blue - She's worried that even the infection is stopped, she will be stuck like this....and that is probably the scariest part of it all..

-Kari
Posted 6/6/2017 12:54 PM (GMT 0)
Kari, what about sharing more stories with her from those that have beat this?

YAY!! turn congratulations on the Bart test!

I pray that you can keep her encouraged until more treatment can be of help to her.
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