Lyme and my eyes....treatment? - Lyme Disease Message Board

hopefulgirl1 · 05-06-2009, 11:30 AM

:Hello everyone,

I'm pretty much a newbie to this forum. I'll give you a little update on what has been going on with me.

I'm 29 years old, and for the past 10 years i have been struggling with joint aches and pains. THey would have their flare ups and then go. As well i have had gastrointestinal problems for the last 5-6 years. I have been told by many doctors there is nothing wrong with me for all these years. Last summer i started to get tingles all over my head and it felt as if the area would fall asleep and i would have to massage it out. Went to see the neurologist once again nothings wrong. Untill this christmas, my eyes started doing extremely funny things to me and the symptoms were/are:

increased floaters
flashes of light in vision
if i would look at a doorway that had no light on it when i turned away the square image of the door would be in a light in my vision
i would wake up in the middle of the night to see my celing in a bright checkerboard pattern
i would have blurred vision
now i'm currently getting almost like a dirty haze in my eye
i feel like i've lost a bit of vision in my left eye and have a little blind spot

These are just a few of my symptoms. In February i was diagnosed with Lyme and started (end of Feb) Biaxin 1000mg, and TInidazole 1000mg. I had a herxes immediatley after my third pill and just felt awful on and off for about 2 weeks. Now it's been 2 1/2 half months on this routine and while i fell my joints are slightly better and the energy is slightly better my neurological symptoms are not. I twitch, have slight confusion, short term memory that you can laugh at, and as well as all the eye problems i'm having.

I went to see an LLMD in washington state (i'm from canada) and he wanted me to stop all meds and start on a new routine as he thinks i may have bartonella. His routine consists of ceftin 2000mg/day, levaquin 500mg/day and diflucan 200/day.

I took this perscritption to my GP and she is somewhat familiar with lyme and she told me this doseage would just throw me for a loop because of my size. So she changed my perscription to Ceftin/1000mg daily, levaquin 500mg/daily and instead of diflucan to continue with the tinidazole 1000mg/daily.

I'm so confused and i don't know what medication is the right one for neuro lyme. I'm terrified beyond belief, i cry every night and pray that i will wake up to see the light of day with my eyes. Has anyone has complications with they eyes? And if so what helped you and did bartonella play a role. As well does anyone have comments on this abx combo?

This is the most stressful journey i have ever had to take in my life and i'm feeling completely at rock bottom.

Lymekicker · 05-08-2009, 04:11 PM

Hello! I too have vision irregularities. Do you see spots as well? I was on Ceftin for awhile as well. I had to get off of it after awhile because it felt like it was starting to damage my system(well, further anyway!). Don't let that freak you out tho because everybody's bodies are different and they handle different meds in different ways. I have bartonella also and need to treat that now as I was only treated for Lyme in the beginning of treatment(and need further treatment unfortunately--my neurological problems are on the rise again as well as physical-yech). I wish you well in your journey. KEEP POSITIVE as much as you can!!! Good luck and take care of yourself. Cheers, M.

hopefulgirl1 · 05-09-2009, 11:08 AM

Hi Lyme kicker,

I am not sure if the ceftin is agreeing with me either. I start to get really shaky everytime I take it. How has it affected you?

I'm being treated for Bart as well and my llmd chose levaquin which is a scary drug since it could potentially cause tendon rupture. If you don't mind me asking what are you taking to treat Bart? Have your eye symptoms eased up much?

I can take this illness on I'm a fighter but when it hit my eyes I completely lost all my strength to fight and became so depressed. Any info you can pass along will be great .

lumpy740 · 05-14-2009, 07:14 PM

does anyone experience constant or almost constant twitching of the eye lid or lids? also i feel like i have conjuctivitis from time to time with blurred vision that resolves about 2-3 hrs after waking.

SarahsDaddy · 05-14-2009, 09:07 PM

I have similar issues with my eyes too. tearing, floaters, twiches, light sensitivity at times and blurred spots in vision, are on and off again, but the floaters are always there and more and more over time. Ever look up at a clear sky and see 20-30 spots, its weird. Eye doc said they are caused by broken blood vessels and dead cells floating in eye sac fluid and cast a shadow, or block a point of light to the retina. I am in my 6th month of treatment and it seems to have built up more floaters as the antibiotics kill off buggers. I have heavy and extreme head pressure and headaches and this makes it worse. the twitching is caused by tired muscles in and around the eye. hope this helps.