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Posted 6/28/2014 10:06 PM (GMT 0)
Hi everyone,

July 4th marks my one year CDC positive lyme diagnosis. I am doing much better than I was when I first started treatment however I have ONE symptom that has been my biggest plague and refuses

to go away. Its hard to explain but Ill give it my best, its not my vision because I have had my eyes checked and I actually have 20/10 vision but I still cant see the way I used too. Its like my image

processing is off. I can see everything but its almost like my brain wants to focus on one thing and not the big picture. It makes me constantly blink my eyes to try to refocus them and then I end up

getting headaches because of it after a while. In the back of my head Im always worried to myself that I am going blind.



If this one symptom went away I'd be golden at 99% again and ecstatic. Aside from the joint damage it caused all of my other symptoms are gone. I have until August to get into tip top shape because I will be joining the police academy. Fingers crossed.


Back story and treatment

I am 22 years old. Diagnosed last July with a super positive CDC lyme test however it was 2 years prior to that that I was bitten by a tiny deer tick, no bullseye rash. I started doxycycline in July and

immediately began to feel worse. Went to see a ID, big mistake, more doxy and anxiety meds were prescribed. I developed the vision thing symptom sometime in September and thats when I said

enough is enough. Found you guys and you led me to my LLMD, basically the only reliable one in massachusetts.

Treatments:
Minocycline
Bactrim DS
Tindazole

nystatin
50bil Probiotic

ATP fuel for fatigue ( Worked wonders, back at the gym 4 days a week now)

Travacor
Calm CP/PRT
Balanced D All of these for adrenal support

Detox:
Cholesteramine
Green Vibrance
Pinella
Lemon water

also supplement with magnesium
And Transfer Factor LymPlus

Post Edited (Tbrown2) : 6/28/2014 6:43:05 PM (GMT-6)

Posted 6/28/2014 10:12 PM (GMT 0)
It's not your vision, it's your brain. You're having trouble orienting yourself in space. I think it's called proprioception.

Not sure what to do about it, except supplements for the brain. If you want a list, let me know.

I think my brain is f-d, and I have some long-term damage.

Strategies for ADD have helped me, and I DO NOT drive on a road that has more than one lane at night, bc I have trouble figuring out which lane the other cars' headlights are in, and so am scared to change lanes.

Margaret
Posted 6/28/2014 11:16 PM (GMT 0)
Im definitely not that bad, I drive everywhere. Do you think its permanent damage or will it go away. It came on over night.
Posted 6/29/2014 12:11 AM (GMT 0)
Tbrown, don't worry about permanent damage - - I know people who were wheelchair bound and couldn't hold their heads up who are now symptom free and back to normal ...

I see that you had bands 58 and 66 reactive - - Dr J ( lyme MD in Maryland ) has stated that he believes that bands 58 and 66 are triggered by babesia ...

I have tested positive for babesia in blood tests, and I have also had bands 58 and 66 show on western blot tests for lyme ...

Babesia, or a similar protozoa or parasite, could possibly cause the feelings you describe - lack of definition, poor depth perception and space issues ...

It could be that you are still dealing with something like babesia, a parasite, or even a bartonella type organism ..

You've come a long way and that is a great sign ... but you might just have some other microbe hanging around that was not effected by the antibiotics you took
Posted 6/29/2014 12:53 AM (GMT 0)
Thanks Tano , but I'm not sure if those are the symptoms I'm feeling. It's not space issues it's more like trouble focusing and the constant need to strain and readjust my gaze. It's like something is blocking my brain from processing all the images I see at once. It's like having tired dizzy hangover vision without being tired dizzy or hungover lol
Posted 6/29/2014 1:13 PM (GMT 0)
Since this is a persistent symptom and seems to be neurological does that mean my meds are not crossing the blood brain barrier well enough or am I just impatient?
Posted 6/30/2014 12:05 AM (GMT 0)
Anyone else?
Posted 7/10/2014 1:32 AM (GMT 0)
I'm taking supplements for brain, but what I found really really help is acupuncture. The first session I had needles on my head (or in my head), that entire day was hell. It's like the needles broke something in the brain that prevented it from getting better (I was stuck with the same sensation in my head for about 9 months -- nothing helped but acupunture). I began to get better since. I'm still getting acupuncture and the symptom becomes less severe and less frequent....now it's hardly there.

Post Edited (RC2013) : 7/9/2014 7:56:14 PM (GMT-6)

Posted 7/10/2014 1:37 AM (GMT 0)
Lol rc2013 so you're suggesting that I get acupuncture and suffer for another 9 months of hell then I'll be good? Lol just kidding. What suppliments are you taking. I find that when I'm tired this symptom is the worst however the other day at the office I was sitting there and something seemed odd then I realized HOLY CRAP I can see normally!!! That was short lived though
Posted 7/10/2014 1:51 AM (GMT 0)
Some people have eye problems with bartenolla.
=]chloe
Posted 7/10/2014 1:55 AM (GMT 0)
no...9 months was when there was no progress with abx on my brain symptom, and my LLMD basically said she didn't know if she could help me with that part. Acupuncture is what got the brain (head flare/pain) better. Actually, it got all my joints pain better/gone too. Only the day of the first session was bad. I've been at it for about 2 months.....but it's costly since insurance doesn't cover. When I told my LLMD that I'm going to an acupuncturist, she actually told me that it was a good thing to do.

The supplement I take for is what listed in the Treatment Guidelines (the 16th Edition of the Guidelines) on ILADS website.
Posted 7/10/2014 1:57 AM (GMT 0)
How often do you go? I have an acupuncturist who's $80 a session that's why I'm hesitant
Posted 7/10/2014 8:46 AM (GMT 0)
I've always thought a majority of eye problems were protozoans like babesia.
Posted 7/10/2014 10:48 AM (GMT 0)
If u read the thread it's not really an eye problem it's a brain problem
Posted 7/11/2014 1:57 AM (GMT 0)
Thrown when I was very ill I did acupuncture once a week for a year then dropped to once a month. Massage helps too.
Posted 7/11/2014 2:06 AM (GMT 0)
Tbrown I was told that it takes the brain 6-12 moths to heal after all the toxins are gone. Some people even say up to 7 years (I really don't want to hear that myself!). I am SO happy you are doing so much better! I have vision problems too, not as pronounced as you describe. Mine is more I cannot read small print. I just got and have not taken yet products from Bulletproof Executive. He is a Silicon Valley investor who lost 6 million dollar company due to Lyme and black mold exposure. He reinvented himself as a health guru and I cannot wait to see what effect his stuff will have on me. My neurological problems are more forgetting things, word recall, not understanding what someone is saying, forgetting names, etc. I will post about these products once I start taking them. Hope you find some answers soon!
Posted 7/11/2014 2:59 AM (GMT 0)
Thanks lyme babe . I was wondering if I added or switched up my protocol maybe that would help the process along ?
Posted 7/11/2014 3:13 AM (GMT 0)
Hi tbrown. How long were you on that antibiotic combo?

I was on the same thing as you but I also had the plaquenil added in.

That combo got me well fast! I should have stayed on it. I may have taken a few steps back by being taken off the tinidazole and going on amoxicillin.

Are you pulsing the tinidazole or taking it everyday? And what are your dosages?

I think my issues are related to eye damage not brain damage, but who knows with these kinds of infections?
Posted 7/11/2014 3:18 AM (GMT 0)
I take 100 mg mino 2x a day
500mg bactrim ds 2x a day
And for the tindazole at first I pulsed 500mg 2x a day for 3 days then 4 then 5 now I can take it every day with no change in symptoms
I started this protocol in February
Posted 7/11/2014 3:27 AM (GMT 0)
You take tinidazole every day now? I wonder why my LLMD didn't do that with me? Hmm. Instead he withdrew the tind.

I had the same dosing. Except I went straight on a 5 days on 2 days off regimine. It worked so well but I think it was stopped too early though.

Do you feel toxic or any ill effects from the tinidazole?
Posted 7/11/2014 3:30 AM (GMT 0)
I don't feel any difference no matter what I take I think the only thing that makes me feel worse is more minocycline it makes me dizzy so I'm stuck at 200mg a day where I was taking 400mg of doxy in my Prior protocol no problem.
Some weeks I do the 7 days tindazole and other weeks I stick to the 3 or 4 days but I really don't see a difference
Posted 7/11/2014 3:38 AM (GMT 0)
Ya same here! Well I took 5 days on 2 days off. But after awhile I just felt toxic. I told that to my LLMD and he pulled the tinidazole from me. After awhile I wasn't herxing anymore and I actually was thinking I had recovered besides feeling toxic.

The minocycline is what caused that relapse for me that past Tuesday night! I kept with it and I get this fuzzy/dizzy feeling but it has already got much less in intensity.

I think lesson learned... I'm going to stay on the minocycline right until the end. It has proved to be key in lots of peoples successful treatment of Lyme, especially in the brain.

AND, I learned something from this relapse/minocycline herx.
I can figure out if the Lyme disease is finally finished by taking a minocycline! If I wake up in the middle of the night with my brain pulsing then that means there is still some Lyme left! If no reaction then there is a good chance I cleared the infection!

Back towards the later days of pulsing the tini... The mino had no effect on me! No side effects at all! So I think the dizziness is from the herx. Although it is listed as a side effect.
Posted 7/11/2014 4:27 AM (GMT 0)
Alpha Lipoic Acid IVs are supposed to help heal the nerves. I have done about 15 of them and when I am in a better place financially I will continue with them.
Posted 7/11/2014 4:33 AM (GMT 0)
IV anything is kind of a turn off for me I'm going to try to stick to the basic stuff as long as I can. It's working ?? I think I hope? Very slowly if that's the case
Posted 7/11/2014 12:46 PM (GMT 0)
Yes it helped me. Of course not covered by insurance. You can try taking ALA 300 mg per day in pill form. Not nearly as effective but better than nothing. It pulls toxins (Lyme, mold, pesticides, etc.) from your nerves and brain and carries them safely out of your body.
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