NAION loss of vision right eye Lyme

Hi, I also suffer from vision loss in just one eye, my eye Dr is perplexed, said there was hemorrhaging and didn't know why.
I found a correlation between episodes of blindness and my b/p. So I monitor it closely. If my b/p is high I don't dare take a hot shower or I will go blind. I always end my shower with cold water.
I also noted in your post that you take Prednisone which is an enemy of Lyme.
So in short, I watch my b/p, stay away from sugar if I'm having trouble, and try to eat healthy foods for my eyes. I use an eye remedy that barlean's puts out that has lutein and Zeaxanthin, omegas, and astaxanthin, also.
Hope you figure it out!

carlnpa - I'm sorry your post didn't get any responses....but this will bump it back up for more views.


What is the plan - ie do you see the Ophthalmologist on a regular basis?

I think it's too soon to know about disulfiram.
Erythromycin isn't usually prescribed for lyme...

If I were you - considering the severity/risk of going blind - I would find a top-notch llmd. Do you feel confident that your LLMD is very knowledgeable and experienced?
I'm wondering if you'd be better with IV abx for lyme and co's.

what area of the U.S. are you in...ie East/West...north/South?

Kackery
If your vision loss comes back you really need to be checked for ms, that is a symptom.
Prednisone is the enemy of lyme and I do believe being on it really stirred up my Lyme symptoms, terrible choice to make between trying to salvage some vision and knowing I have a lyme issue. I was on doxy 400mg/day during time on pred though.
My vision isn't coming back, optic neuropathy.

Post Edited (carlnpa) : 7/12/2019 4:16:56 PM (GMT-6)

LLMD has diagnosed me with Lyme.
Horowitz score about 100, 50 is presumptive Lyme
MDL Testing done late June
IgG Immunoblot line 41 is at 56%, 60% is the CDC cut off for positive - line 34 faint
IgM Western blot line 34 is at 44%, need 60%, only one thing sets off line 34 - Bb, lines 41, 39, 31 are faint but visible.
No other co-infections indicated (Bart, babs ehrlichia, rickettsia)
My CT Scan, MRI, multiple blood work ups all perfect
We don't know if IV treatment would work better - or worse. The literature shows it both ways and no opthamologist will treat for Lyme whatsoever, without a CDC positive.
I have been in contact with both Johns Hopkins Lyme Research Center and NIH Bethesda (actual phone consult with one of the researchers, was kind enough to give me a call back and 30 minutes of his time).
There is no definitive knowledge base on eye involvement, though eye involvement is very real and documented in Lyme disease.

Post Edited (carlnpa) : 7/12/2019 7:00:03 PM (GMT-6)

MDL Labs offers a panel of tests for the vector coinfections.
Lyme c6 peptide by elisa, IgG/IgM by elisa, IgG/IgM by western blot
Lyme DNA by PCR
Borrelia, afzelii, garinil, lonestari by pcr
Anaplasma phagocytophilum IgG/IgM by IFA
Bartonella by IgG/IgM by elisa, pcr
Bartonella henselae, by pcr,
babesia microti, duncani by pcr and IgG/IgM by IFA,
ehrlichia by pcr,
rickettsia by pcr.
That lab testing was all negative, there was response to bartonella and lyme but below their positive threshold range.
I know I had bartonella as cat scratch disease, many years ago.

The testing was the LLMDs call.

Considering the eye issue, probably a good idea, it's a shame about the false negatives though.
MDL for many of the tests will indicate the response even if below their threshold level. Quest for example just show negative/positive, no intermediate response.

I have no idea yet what this testing cost, or if insurance will cover any of it. They will not cover the LLMD.

Bart has been known to also cause eye issues.

The best guess is "something" caused an inflammatory reaction at the head of the optic nerve where it meets the retina, creating an edema that caused loss of blood (plasma?) flow to the optic nerve, and a portion of it died, like a stroke.

Some opthamologists have been able to recover active spirochetes from the ocular fluid and directly treat through ocular antibiotics.

My relapse with Lyme I am sure is related. I had noticed my vision had deteriorated (floaters, acuity, sun sensitive) in the months prior. Even with an eye exam I am unsure if an opthamologist would have been able to avert the event.

BTW I am 60 years old and have probably had Lyme for 20+ years. I have had three dogs die of confirmed Lyme kidney or other complications. How come they can readily identify Lyme in canines and it's so hard to in people?

“Bart has been known to also cause eye issues.”

I have read that, as well. You might consider including some herbs for bartonella. Recommend Buhner’s Bartonella book and Healing Lyme 2nd edition.

Here’s the thing. You say Lyme relapsed. Relapse occurs when the immune system is decreased for whatever reason. If the immune system falters, any infection you harbor in your body can potentially flare or relapse. You said you know you had bartonella many years ago.

I would hone in on bartonella. Not saying ignore Lyme (borrelia), but bartonella could very well be the biggest issue here.

Make sure you are not exposed to toxigenic mold, as it will suppress your immune system and alter your microbiome, not to mention make your existence hellish if you develop sensitivity to it.

My optic nerve image showed a problem two years ago. Last year, it was normal. I attributed that to my treating bartonella and Lyme, etc using Buhner’s herbal protocols. This year, it was back to abnormal again.

After more lab testing, I found my CD57 (immune market) had plummeted after having increased to 86. It dropped to 35. Then I got mold testing back and learned I was being exposed to toxigenic molds and mycotoxin levels were high on some and off the charts on one.

Hi Carlnpa
Sadly I find myself in a similar situation to yourself. I can't imagine how traumatic this all has been for you, for that I am very sorry. I was tick bitten in 2001, treated for Bartonella and Borrelia with Minocycline 200gm and Azithromycin 600mg M, W, F pulsed. IGG's have been improving, treatment is 5 months in. I have been having issues with my eyes for quite a while, but recently things have become more noticeable. Firstly there is a sensitivity to light. If I look at a bright light it leaves a ghost image for an abnormal amount of time. Also if I look at white text on a black background I start to see shadowy dark bands, when I look away I can actually see these bands wherever I care to look. Like persistence of vision but for a long time. Also when moving from outside sunlight to indoors, my eyes don't adjust normally and everything is very dark. I have also on very rare occasions had a tiny pin head of light appear in my vision, like a firefly most peculiar. Anyway, I too am exploring Disulfiram as my next approach. Antibiotics just aren't a long term solution and costing a fortune. I intend to continue with the abx. Although I have read that DSF alone can actually cause optic neuritis. And one patient lost his vision in one eye. He was on DSF for 18 months though at full dosage. I do realise this is a very rare side effect, but given my existing problem I don't want to pour petrol on the fire. Mind you the underlying infection needs to be addressed in any case, otherwise guaranteed degeneration. How did you get on? Did you do disulfiram in the end? if so for how long what was your max dosage and did you notice any improvements? My LLMD believes my main problem is Bartonella, I am inclined to agree. DSF is not considered that powerful against Bartonella. I will be following up with methylene blue next, Johns Hopkins discovered this as a viable treatment against Bartonella.

Hi Carl just wanted to check we aren't doubling up! I have been chatting with Carl S.... on the Facebook Disulfiram for Lyme Support Group (Antabuse). Are you one and the same? There appear to be a number of people experiencing very similar symptoms. Mostly recognised to be originating from Bartonella but also from toxic optic neuritis from DSF. One chap's daughter had to stop DSF because her vision became blurry in both eyes. Looks like we should almost have a little unique club somehow so we can easily compare notes. I am losing track of who I have communicated with and where