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Vision symptoms still remain or are worse

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Posted 6/19/2020 10:15 PM (GMT -5)
Blakeley has had three weeks not in bed!!! Praise God! She feels 50-60% most days and has ups and downs but no major crashes that she can’t handle. We are still active with some DesBios treatments but not the series kits at this point. We may go through another round after this current protocol.

Major symptoms still include heavy feeling, bone pain, muscle contractions/spasms uncontrollable without medication, vertigo/dizzy.

Also, all the vision problems that started in the first week of the sickness. Double vision and inability to focus to read at all. None of that has gotten any better at all. Neuro opthomologist said no optic nerve swelling, no nerve palsy, no obvious reason for the condition. Couldn’t put her in prisms bc her eyes keep jumping around trying to focus.

My question is this: should we try to address the vision issues now (through vision therapy which trains the brain to converge eyes etc) or continue with treatment and wait to see if vision returns to normal? We have experience w a vision therapist who works with patients due to brain trauma, illness, etc to get eye muscles trained to work together. Just not sure it called for at this time or if she could even do the therapy. She can’t get any object single. You can see her eye trying to pull over and then it gives up.

Maybe too many details, but her right eye basically doesn’t “see” things she says. It’s like she’s looking at something but she’s not seeing it or the eye looks away. The left eye is the one she’s using to be able to see right now.

Anyone else with any of this at all? Thanks!
Posted 6/20/2020 12:45 AM (GMT -5)
That sounds awful! Is it something she can try now and if it’s she’s not able to do it she could try again later? If there’s no harm in trying it, I wouldn’t necessarily wait. You never know until you try.
Posted 6/20/2020 7:53 AM (GMT -5)
has she tried antibiotic eyedrops? mangosteen or vit a supplements. bee venom helped my focus and washed out vision . there are bee venom eye drops online as well
Posted 6/20/2020 12:01 PM (GMT -5)
I have really bad eye problems due to likely TBD (blind right eye).
Does she feel like there is something/fullness/discomfort in her eyes?
Things that help my vision:
MSM eye drops - Dexterity Health
Lutein/zeaxanthin 40 mg - Puritans Pride 80-120mg daily
Antihistamines Loratadine (claratin) and Benadryl.
My optic nerve is badly damaged.
Vision can recover.
Many treatments themselves cause eye issues.
Posted 6/20/2020 10:08 PM (GMT -5)
She did try antibiotic drops for a month a year ago, in the beginning of illness. I believe this is neurological related as it’s like her right eye has just turned off.

Neuro opthomologist said no optic nerve involvement. Also said not a nerve palsy because the eye can move. She felt like her eyes hurt at random times, like a pressure headache, but not now.

I watched a short video of a lady who went to Dr Padula in CT, and she describes exactly what Blakeleys symptoms are. That dr does therapy, prisms glasses, other physics therapies to try to restore visual midline. He seems brilliant but ugh...don’t even know if possible to go to CT. Maybe he could refer to someone locally.

We plan to check w the local eye therapist doctor and get evaluation to see if she could do some therapy now. I’m not sure she knows the depth of causes of the issue.
Posted 6/21/2020 12:50 PM (GMT -5)
Blakeley

Below is a link to a free online visual field test you can do at home.
It is useful to try to sort out eye issues, and to document changes in visual acuity.

http://www.eyesage.org/?lang=us

You need to rule out bartonella, it targets the blood rich nerves in the eyes. I have seen three neuroretinal specialists, none of them were current with tick borne diseases and ocular issues.

Cat-scratch disease: ocular manifestations and
treatment outcome
https://pubmed.ncbi.nlm.nih.gov/29504674/
Posted 6/22/2020 12:11 PM (GMT -5)
Does anyone else think this could be vagus nerve related? Recently been working on the exercises in the book Exercising the healing power of the vagus nerve and I feel like the swollen feeling I get behind my eyes which effects my vision is definitely correlated to something there. Whether it’s my treatment for bart or these exercises.. maybe both? My trouble getting my eyes to focus further away seems to be improving.
Posted 6/22/2020 1:22 PM (GMT -5)
Do doctors check the vagus nerve or would they be able to tell us that? Neurologist? Eye doctor?

We have avoided going to neurologist during this illness. If we need to, we will, but past experience is deterring us.
Posted 6/22/2020 1:54 PM (GMT -5)

Blakeleysmom said...
Do doctors check the vagus nerve or would they be able to tell us that? Neurologist? Eye doctor?

We have avoided going to neurologist during this illness. If we need to, we will, but past experience is deterring us.


Someone more experienced feel free to chime in if there’s ways for this. I’m working with a functional medicine doctor and he didn’t do anything, more so a clinical suggestion as my CNS is effected so naturally the vagus nerve is part of that.
Posted 6/24/2020 10:27 AM (GMT -5)
I've definitely had the exact same problem, though not as bad as your daughter. I would be looking at something but not be able to see it. It only really causes trouble when I'm driving—I can even ride my bicycle fine.

But the other day, I went for a drive and it was amazing—I could see everything finally! No change in my glasses. Now if it would only be like that every time I drive.

I still have trouble recognizing people, with is a different problem. Close up or far away, or with or without a mask on, I just can't recognize people very well outside of my immediate family and close friends. Not seeing people because of COVID seems to have made it worse.

I will check out Dr. Padula.
Posted 6/24/2020 12:48 PM (GMT -5)

bluelyme said...
has she tried antibiotic eyedrops? mangosteen or vit a supplements. bee venom helped my focus and washed out vision . there are bee venom eye drops online as well


If I just get the drops for floaters (never done any BVT) would that be okay?

Does it help with light sensitivity or tinnitus at all?

Thanks so much!
Posted 7/30/2020 3:49 PM (GMT -5)
My 9yo son son has tested positive for bart and lyme. Prior to that, and while he was certainly infected (in hindsight), he was diagnosed with convergence insufficiency and did a year of vision therapy. It was very difficult, but we did see improvement as a result and it has lasted. He was having issues with blurred vision and letters "jumping" on the page prior to therapy.

Currently, we are using houttuynia to treat the bartonella and every dose he is getting causes new vision problems for 24 hours--namely he does not see colors correctly, although not color blindness because he can see orange as pink one day and brown the next. But then it passes and he can see normally. It's weird.

So, I think that you will definitely see improvement with treatment, but our experience shows that you can also make gains with therapy. We have done vision, occupational and speech and have seen improvement with all--possibly because there are still developmental stages in play with him. But, you might want to wait until your daughter is in a space where she can do it. It was a slog for us and that was not his worst time. We have stopped OT and speech for the moment because he is not in a space right now to do that.

Best wishes!
Posted 7/30/2020 3:59 PM (GMT -5)
I would go for it with the therapy if you think it can be done safely (re: pandemic) and if you think she can handle the hoopla of appointments without over-exerting herself. Nervous system involvement can come from infection directly or from inflammation, but things get wired a certain way over time, and it's important to combat that, infection or no. And no wonder she's dizzy with all of that going on! My heart goes out to you both.
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