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I've not posted much in a long time. Every now and then though I stumble across something that reminds me of the struggles.

 

One of my son's earliest symptoms were non-responsive dilated pupils. Doctor after doctor stated that it was the result of the medicine he was on. Well yes doctor that is a side effect however his pupils were dilated before he ever started medicine - that's what sent him for a quick MRI initially to rule out tumor......blank stares.

 

So years later I read that there are really only a few causes of pupil dilation: medicines, tumors, brain inflammation that impacts the optic nerves or inflammation of the optic nerve. There are probably more but....

 

Have been reading articles recently about the link between bartonella and inflammation of the optic nerves, much of it beyond my understanding but get enough to have that aha moment.

 

Yes - my son was diagnosed with bartonella in addition to the lyme bacteria.

 

His pupils were dilated from age 7 to 12+. And then we found an LLMD who properly diagnosed him.

 

To be more positive - 2 1/2 years into treatment: eyes look great, no raging/behavioral issues, residual OCD, dystonia remains number one symptom. Waiting for blood culture test for lyme. Continues with ABX as his dystonia got worse when he went off for the month prior to getting the culture test. Will get his 8th IVIG in April.

 

Standard caveats. I am not a doctor nor pretend to be. Just putting my observations out there in case it helps someone else. Every person is different.

 

bill

Edited by Bill
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Thank you Bill. My DS also had dilated pupils...I used to say (before I knew they were dilated): "It's in his eyes...they look like a tiger ready to pounce", as he would simulataneously become extremely ragey, and things would start being thrown. Also diagnosed with Bartonella, along with mycoP (can also cause rages), strep, babesia, erlichiosis, lyme, mold, and we suspect viruses, too. But, what helped with the dx of bartonella was that he also had "stretch marks" (for several years) that were deep reddish/purple and looked like cat scratches. They went away 50% when he was put on IV abx for strep that wouldn't clear, an enlarged spleen, and elevated liver enzymes. Today, he's doing extremely well, since being treated for it. Occasionally, when he's not feeling well, he gets semi-ragey (not as bad as he was), but he runs to his room. Yes, his eyes get dilated at those times. The Bartonella is significantly better, but not completely gone.

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Nice Update!

 

A long time ago I spoke with our LLMD about dilated pupils and he said probably swelling in brain/pain but did not specifically mention Bartonella. We too have bartonella diagnoses in all three kids. I still question if there is inappropriate dilation (nothing like the dilation previously) at times in one child however we are treating extremely aggressively for Bartonella right now for all three kids. We also still have an occasional wondering eye in another child. Eye exams over the years indicated huge variation in eye sight for one child: 40/40 at 4, 50/50 at 5, 70/100 plus wondering or lazy eye at 6 when we started treating for Lyme et al and was 20/30 at last check a year ago.

 

I definitely think there is both potentially inflammation in the brain and optic nerve inflammation maybe specifically Bartonella but have also read Babesia can have similar impact on eyes. We also had 'Floaters' which is typically lumped as Babesia symptom.

 

 

 

 

 

 

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