Vision problems

I'm having increasingly worse problems with my vision. Does anyone use glasses (maybe even just reading glasses), for vision problems associated with Lyme?

I haven't seen an LLMD yet (one week to go!), but I'm wondering if I should try to get my vision checked in the meantime.


It seems like every time I'm certain I'll see dr for a specific problem the doctor can't find anything wrong and it ends up being frustrating and a waste of time.

So...I thought I'd ask for some advice on the Vision problems in advance before I schedule an appt. thanks for listening! :)

I still have problems with blurry vision which comes and goes.  The white and/or black shadows that run across the eye are diminishing as well as floaters, bursts of light and jumping eyeballs.  I, too, had my eyes checked and they were fine.  I wear reading glasses but they do not help when I have the blurry vision.

Patty  xo

I have floaters, blurry vision every now and then, white half moon flashes in the corners of my eyes, sometimes it feels like there's a film covering my eyeballs. Very light sensitive too.

I also have severe myopia (-10), don't know where that comes from, no one in the family has this...

Ophtalmologist says my eyes are ok, nothing wrong with them! except for being as blind as a bat

jr-My other symptoms are: severe fatigue and malaise, muscle pain, muscle twitching, muscle stiffness, joint cracking and stiffness (I don't have a lot of joint pain, most of my pain is muscular), lightheadedness and dizziness, major cognitive problems, neuropathy type pain/stinging/burning in my feet, a feeling that something is crawling on my face and head and sometimes other parts of my body, tingling all over, cold hands and feet, difficulty staying warm, an internal "vibration" sensation. And I'm sure there is a symptom or two that I've forgotten,LOL!

I used to have major GI involvement-nausea, vomiting, bloating, etc. That has subsided since starting treatment, but returns some when I'm in the midst of a really bad flare.

I tested Igenix Western Blot positive, CDC negative. I had several positive bands including a couple that were very Lyme specific (31, 39 & 83-93 I believe). My LLMD said that it's indisputably Lyme based on the positive bands. She also diagnosed me clinically with Bartonella. Looking back, I had symptoms for many years, maybe since childhood. I'm 34 yrs. old. The infection became active and debilitating after my second pregnancy due to immune system changes. I'm seeing a LLMD. I started treatment 5 months ago. The progress is VERY slow, so I often feel that I'm not making progress, but looking back, a couple of symptoms have improved including the neuropathy pain and the GI stuff.

My eyes were affected by either my Lyme or Babesia infection. This was before I had started any treatment - during my denial period. They got worse, a lot worse for a while, then after about 8 months to a year, they were better and I had to go get yet another pair of new glasses!! LOL!

I also had those lovely floaters, blurry vision, after-images, I got white dots rather than black ones, and of course the light sensitivity as well. Those have cleared up for the most part with treatment though.

Thanks everyone, that's just what I needed to know! Just a few more questions... :)

So Traveler, did the glasses help? I honestly haven't had my vision checked in so long, I didn't know if it's the Lyme alone or just vision problems in general! I do know lyme affects it in some ways though because sometimes it's much worse than others.

samjones, I'm looking in to those eye drops...I saw them on amazon, but just a little pricey for me at the moment. Do they sell them in stores that you know of? Maybe I can find an "off" brand cheaper. I'm going to look into that :)

Mystery Illness, I read your symptoms and put a mental "check mark" by each one!! Unfortunately, I'm fairly certain I'm in the midst of a terrible "flare". Except for me a flare is more like all the time with a few breaks in between...yikes. This is getting tougher all the time.


MarieLS- about a year ago I had that film on my eyes. I thought layers were peeling off, I totally freaked!!! When I went to "see" my doctor it was via satellite tv. Yep, I sat in the office and stared at a tv while she proceeded to tell me it was "just allergies". How could she know that through the television screen? She must be psychic ;-) Its funny, I've had so many seriously scary things happen since then that I'd forgotten all about that one!!

ecotick, did you use the "can see" brand drops that samjones mentioned, and did they work for you?

Patty, do the reading glasses help you at all? I get frequent headaches and think I might just need them (aside from the lovely lyme issues).

I'm excited to say my first LLMD appt is now just days away! Maybe he can give me some insight on the vision stuff... If I can just remember to mention it! Needless to say I've got a fairly extensive list of symptoms to discuss.

Thanks again everyone, I feel so lucky to have so much support from you guys!

Marie, it was very strange. She was just my family dr at the time. She had already referred me to a rheumatologist at the time, but I was still waiting for my first appt. Around that time I had just lost my insurance. Once she heard that I only saw her via TV, so I just stopped going. It was pretty ridiculous. I mean there was a nurse in the room that looked at my eyes, but still. I was pretty upset. Luckily I got my insurance back, but thanks to that lapse it was a full year before I actually got in to see that rheumatologist. He's the one that ran the original lyme test that came up positive.

Prior to that I knew nothing about it. Then he did a WB, of course, and said I didn't have Lyme. Luckily I had done my homework in the meantime and was prepared to be told that it was negative (even though a Lyme-specific band actually was present).

That's the most frustrating part about all of this, is feeling so sick and so scared at times...only to be brushed off and dismissed by one doctor after another.

- Mystery Illness

What I find interesting about your symptoms is the fact that you have all these very unusual visual issues as well as the non-visual issues. You have probably come across it but there is a "visual snow" forum online that I have been on for a couple of years since developing these visual symptoms.

It's very common for people who get VS to also have increased after images, floaters, etc. It's NOT very common for these people to also experience these other symptoms that you describe, however I also experience this as well.

Like you I can look back to about 10 years ago (I'm 31 now) and see that I had some health issues going on which were pretty well constant. I had what I guess is called brain fog except mine was more of a 24/7 spaced out feeling that never has gone away, along with mild dizziness and feeling fatigued more than I should have been for someone at my age.

I also felt as if there was something strange with my vision back then but put it in the same category as the brain fog/spaced out feeling. All this persisted up until about 2 years ago when I was hit with a long list of other symptoms that seemed to develop over a couple of months.

I developed lots of floaters in my eyes... images started staying in my vision longer than normal (reading text off a computer screen and then looking away I see vertical lines across everything, even with my eyes closed... this can stay in my vision for up to a minute at times. Window blinds are also horrible for after images but pretty well everything now will cause an after image).

Around this time I also developed eye and ear pain, tinnitus, extreme dizziness and always feel like I'm swaying when I'm really not, I get the internal vibration or shaky feeling.

I then started to develop twitching everywhere in my body, my muscles started to fatigue very easily to the point where I get that burning fatigue feeling you would get working out really hard just doing simple tasks like washing my hair or standing for just a couple of minutes... I need to rest them to get rid of that feeling.

The muscle fatigue seems not to be just in certain muscles it seems to be more of a central fatigue effecting every muscle even the eye muscles (I get daily tension headaches and my vision gets blurry throughout the day because of this).

The fatigue is by far one of the worst things going on... doing simple house chores like loading the dishwasher sometimes drains very ounce of energy I have and I start to get really weak and shaky and need to rest for it to go away. I think this is called post exertional malaise.

Other symptoms include temperature sensitivity especially with heat, arms and legs feel heavy, aches which feel like my muscles are being ripped apart but I believe its coming from the tendons, waking up feeling hungover without even drinking, constant lightheaded/woozy feeling, head pressure, the dizziness is getting unbearable now too... even moving my eyes around makes me incredibly dizzy.

I've been to many doctors as well and had all the blood tests, MRIs, neurological assessments, etc... and they can't find anything except my testosterone level is off the charts low and my cortisol which was normal a year ago is borderline addisions disease now. I've been treated for these issues but they really don't make much of a difference.

I've posted in various forums over the last couple of years trying to get some answers and based on my symptoms most people said Lyme Disease so I finally got tested. However I tested negative on the ELISA but decided to go the IGENEX anyways and everything was negative there to except 1 IDN on band 41. I ruled out Lyme at that point but things continued to progress so I decided to see an LLMD and started a treatment plan with lots of antibiotics... I did this for about 2 months and didn't notice any difference at all so I concluded that I must just be going crazy and stopped all treatment.

Things continue to progress... everything gets worse. I feel like I'm headed for a slow, very cruel death.

Again I apologize for rambling on about my problems when everyone else here is struggling too but I was very interested to find that you and even Traveler have the unusual visual symptoms along with the other ones. So I am really interested in following your progress.

I am still not being treated for anything because no-one knows what to treat. I have this constant debate going on in my head thinking it must be some kind of perceived illness or anxiety thing but then in another sense I can't help but know that there is something seriously wrong but what it is I don't know.

Maybe I didn't give the treatment long enough but even my LLMD though I should have noticed something change within 2 months. Lyme just makes sense to me... except I don't have inflammation in my body based on my blood tests and I though that it always produced inflammation. Also, I haven't had any joint problems up until very recently I'm starting to get pains in my knees, elbows and fingers. The strange sensations I feel and pains in my limbs seem to occur mostly bilaterally (the same on both sides at the same time) which I didn't think was typical of Lyme.

Would anyone recommend still treating this as Lyme?

My sincere apologies to Lymer for cutting in on this thread, but I guess if I do have Lyme then I can say that I experience a lot of visual problems even though I always ace my eye exams.

When I saw the LLMD they didn't order any tests, I did the IGENEX test prior to going. I was also tested for the co-infections as well. I'm not sure whether they were ILADS trained or not, but in my opinion really knew their stuff and also had the disease themselves. I no doubt should have stayed on the treatment longer but I guess I convinced myself that if I had Lyme the IGENEX test would have picked it up or I would have shown more than just an IND on 1 band.

Really appreciate your input, thank you.

jr-Yes, the visual symptoms are one of the things that made me continue searching for answers in the year that I was undiagnosed. Many of the neurologists that I saw thought that it could be migraine aura, but the migraine neuro. tried migraine meds. and supplements, none of which changed anything and then he said that he didn't know what was wrong with me and treated me like I was nuts. It was the combination of neuro. symptoms and pain that just didn't fit together into a diagnosis of anything that the 30+ Drs. could find. I was diagnosed with POTS by a neuro., but that didn't explain the visual static or muscle pain and joint stiffness. And I do have POTS, but it is caused by Lyme. Many people with Lyme Disease have POTS and/or other forms of autonomic dysfunction.

Wow, you're the first person I've heard from that describes the after-images just like I do! I have a horrible time with vertical blinds and reading on the computer.

I forgot to say that I also have tinnitus. I knew I'd forget a symptom or two, LOL! I used to get a swaying feeling like you describe, but that has subsided for the most part, since starting treatment.

The fatigue is very debilitating for me also. I used to be very active and went non-stop. Now, simple tasks completely exhaust me and I ache all over. That is very common with Lyme.

Yes, I get dizziness too. Oh, LD is just sooo much fun! That has subsided now some also.

The hungover feeling upon waking is also very common w/ Lyme (and POTS). I wake up feeling like that every morning. For whatever reason, mornings are often the hardest for us. I always say to my husband that I WISH that I had been out partying and drinking the night before!

Don't apologize for your long story! The more info. that you can provide us, the better we can try to help you! One thing you'll find on here, many of us have VERY long stories, similar to yours.

I'm sorry that you are so sick and feel that you're dying. I too have felt that way many times. Before diagnosis, I really thought that I was going to die.

You're not imagining this - it is not a "perceived illness". It is NOT psychosomatic! Believe me, I've been there...my doctors couldn't find anything either and I thought that I was losing it. I thought maybe I was imagining it, especially because I had so many Drs. say so, but I kept searching for answers. I knew deep down that something was seriously wrong and that I was very ill.

My inflammation levels weren't high either. The only thing that was "off" in blood work was a high Monocyte count which I now know can indicate an infection. I also don't have any major joint problems. Some of my joints are a little stiff and crack, but I don't have severe joint pain. Most of my pain is muscle pain. I have pain and symptoms on both sides of my body also.

When you initially started Lyme treatment, what abx. were you on? Did you initially feel worse? I ask because many people experience a process called herxing when first starting Lyme Treatment, where they feel worse.

You asked if it would be worth still treating Lyme. In my personal opinion, ABSOLUTELY! You would need to be re-evaluated and treated by a LLMD.

Here are some things that you can do in the mean time:
Detox-See info. on New to Lyme Thread. Easiest to start w/ may be Epsom Salt & Hydrogen Peroxide foot or full body baths and tons of water with fresh lemon. Start slow with detoxing because it can cause herxing.

Nutrition-do everything you can to boost your immune system. Eat lots of veggies. Stay away from all sugar-sugar helps lyme grow.

Herbal Protocols-such as Stephen Buhner's book "Healing Lyme" (this is just one of many). You could start an herbal protocol while waiting to see a LLMD.

Hang in there! Your symptoms are so similar to mine. I understand how awful and debilitating it is. From what I have read from other people w/ Lyme and similar symptoms, it is a long, slow healing journey, but healing IS possible.

Glad I came across these posts. I have constant visual "static" as well, along with double vision and black eye floaters. I have seen an opthomologist and a neuro opthamologist, both found nothing wrong. Does anyone else have trouble focusing their eyes, for example when trying to focus on a person while having a conversation?

Hi, Jr how are you doing??
I have all of those visual symptoms too and was just diagnosed with Lymes with 6 positive bands on IgM and only two with one IND on IgG which is strange because I have had this a while.

Have you done anymore treatment?

I have tried Samento for a few days with no but herx.. Going to try oregano oil as I always reacted to that before I knew I had Lymes.


Let me know how you are!
Candi