The last 4-5 days I have been getting some severe eye pressure, especially on my left side. No other terrible systems with it besides some head pressure, but not as bad as normal.
My blood pressure hasn't been sky high, glucose in normal limits, etc.
I have not been on any drugs for a couple of weeks. I've actually felt significantly better off them than on, but certainly not great. I'm getting back on very soon.
The eye pressure is very, very concerning. Does this usually come along with a specific TBI?
What I'm most scared of is I have heard this is a sign of an amoeba infection that can be very dangerous.
Any suggestions on what can be done? I'm debating whether to see my eye doc, but he is not Lyme-literate. At this point, I guess it's just more important to be evaluted if it remains here.
[ 03-17-2011, 06:15 PM: Message edited by: seekhelp ]
Posted by seibertneurolyme (Member # 6416) on :
For hubby the eye pain always seems to be from babesia.
Bea Seibert
Posted by sammy (Member # 13952) on :
You should go ahead and see the eye doctor. They can rule out anything else that might be causing the pressure and pain.
Posted by Carol in PA (Member # 5338) on :
What are you using to reduce inflammation?
Magnesium Fish oil Systemic enzyme therapy LED light therapy
Posted by seekhelp (Member # 15067) on :
Carol, none of the above. I've cut way back on supplements for the time being until I pump up treatment again. I'm pushing hard to exercise as my cardiologist asked. I'm going down trying at least. I have been way, way out of shape and feel bad, but I'm going to give it my best.
The one thing I've been taking religiously now is D-Ribose.
Bea, everything I have always seems like Babesia. I bet my life would be a million times better if I could rid it. I couldn't even imagine. Sammy, I probably will go to the eye doc soon if it persists. Thanks.
Posted by marypart (Member # 27012) on :
Seek, check this out... Ocular stuff is really common in lyme
If you are anywhere near NY state, there is an excellent, very LL opthalmologist in Westchester. PM me, if you want the info. She's had Lyme herself and went to Dr. B. She really tests and knows things that regular opthalmologists don't have a clue about.
Yes, Lyme & co can really do the eyes in. Don't delay on getting it checked out. YOu want to make sure there is no elevated pressure in the eyes (glaucoma), and many other possible problems. Just think how important your vision is!
Posted by apljack (Member # 14233) on :
ehrlichia caused my eye pain, I think. It's all so overlapping, sometimes it's hard to even know anymore.
Get thee to an eye doc just in case. The eyes are supposed to be a window to your health.
Posted by seekhelp (Member # 15067) on :
I have an appt today @ 2 PM with my eye doc. We'll see how it goes. I agree vision is pretty darn important!
Posted by feelfit (Member # 12770) on :
how did the appt. go?
Posted by seekhelp (Member # 15067) on :
Now I REALLY freaked out. Went to my appt today. he did a manual look at my eyes..looked fine. Glaucoma pressure meter came back fine. He's a very thorough well respected doctor.
He decides to dilate my eyes. He initially thought my prescription changed significantly and this was all eye strain. Then, he had a hunch he said and decided to pursue it. He did an ultrasound of the eyes and took pictures of my retina. He walks back in and scares the crap out of me.
He tells me at 4:30 PM that my left optic nerve is significantly inflamed. The right side is fine. He wanted to send me for another lab immediately for further testing, but the retina expert was out for the day. I think he mentioned an angiogram or something. I asked him possible reasons for inflamed optic nerve and he didn't go over them all. He didn't want to jump to conclusions w/o further evaluation.
He said viral issues can cause it.
I have an appt tomorrow with the specialist @ 10 AM. i'm pretty concerned honestly and don't know what this all means.
I pray it isn't MS. Lyme....sounds familar, huh?
Posted by seekhelp (Member # 15067) on :
My other concern is I'll need to take steroids, but honestly I will not risk my eyesight over that issue. Way too important to me.
Posted by Susie R (Member # 30780) on :
I'm sorry to hear this news---you will be in my thoughts and prayers for a quick resolution of this problem.
Susie
Posted by Shahbah (Member # 28735) on :
seekhelp, nerve inflammation is NOT MS, with MS you'd simply be unable to use your arm, or leg or loose your eyesight... MS is specific to the brain... Now nerve inflammation is part of the clinical picture of MS but it is a different cause, maybe the immune system going crazy, maybe your stomach and gut sending fire to your nerve endings...anything is possible,doctors just don't know yet, just like sciatica can be part of MS but is NOT MS... SO don't worry to much and keep us posted.
Posted by seekhelp (Member # 15067) on :
Shahbah, I guess the only good thing is I've never had anything but clear MRIs over the years. My last one was in late '09. I have not had those type of symptoms you described like loss of use of my arm, leg, etc. A lot of weakness at times, but not that. I'd put my money towards Lyme, but who knows.
Posted by feelfit (Member # 12770) on :
Seek, I know that you are aware that the optic nerve is often affected in LYme Disease...so, another conclusive piece to your puzzle, IMO.
Since your brain scans are clear of any hyperintensities, it's prettty safe to say that you do not have MS, right?
I wouldn't worry about the steroids at this point, IF they are needed....eyesight is very important.
Our saginaw doctor was never concerned about a small amt. of steroid when necessary...i think it's better if you're on some sort of abx as well...at least that's what he said...
be thinking 'bout you tomorrow. good thing that you follow up on scary symptoms, who knows your body better than yourself, right?
pls. keep us posted.
Posted by seekhelp (Member # 15067) on :
I don't know tons about MS, but I think what you said is true Feelfit. No lesions ever showed up. I never had a spinal tap to rule out anything though.
Yes, I'm aware of the Lyme/optic nerve connection. I don't know how much more proof my local docs need that SOMETHING isn't right... it's bewildering to me.
Posted by 17hens (Member # 23747) on :
I've had a corneal virus for years, treated with ocular steroid for 1.5ish years, became sick with lyme&co (now I know I had cos, and maybe lyme too, for years and the eye was a part of it) and eye is 99% resolved with treatment.
When treatment is done, I'm sure eye will be at 100%.
Don't worry, seek. IMHO, You'll be OK.
Posted by sammy (Member # 13952) on :
Seek, I'll be praying for you. I'm glad that your doctor decided to do a thorough evaluation.
Posted by seibertneurolyme (Member # 6416) on :
Seek,
Did the eye doc take your blood pressure? When my brother had what we thought was a TIA he also may have had a swollen optic nerve. One eye doc thought it was swollen and then by the time he could get in to see the specialist a few days later it looked normal.
Please be sure to discuss your blood pressure issues with the new doc.
My brother did have high blood pressure which had not been diagnosed prior to that incident. It has been 10 years or so and he has never had any more problems -- has kept his blood pressure controlled with meds and improved diet and exercise.
Bea Seibert
Posted by seekhelp (Member # 15067) on :
Bea, no they don't take blood pressure there. My blood pressure has been running around 145-150/low 90s. I have had some better readings the last week, but one week doesn't mean much I know.
I will discuss the blood pressure stuff with the retina specialist tomorrow. Are those readings high enough to cause damage? I'm in my mid 30s.
I STILL can get no doc to give me other meds, even the cardiologist I saw. I'm batting 0% getting med changes unbelievably. It seems so insane to me.
Thanks Sammy for the kind prayers. Posted by Rumigirl (Member # 15091) on :
Uh, don't you have an LLMD?? If not, it sounds like you need one (a very good one, of course) ASAP!
After you see the retinal specialist, you should probably follow-up with the LL opthalmologist.
If you do need any steroids, other than local drops, yes, you do need to be on abx for sure. And I know that with a problem like this the LL opthalmologist would be lobbying for IV tx. At least this dr has with others with optic nerve problems due to Lyme.
I'm glad you went to the dr right away! Never a dull moment, huh? You should be able to beat this with the proper dx and tx.
Posted by chiquita incognita (Member # 30381) on :
One thing I know about myself, is that when symptoms come, my mind always races to the worst possible thing. YEIKS!
I freak myself out.
I have learned to notice this as a *pattern*. Because it's a *pattern* it can only fool me if I buy into it. If I recognize it as a *pattern* in my thinking, then it dissipates the fear a lot.
Time and reading have taught me this too:
So many things can cause the same symptoms. Irritated nerves don't necessarily have to mean that you have MS.
St Johnswort tincture (cheaper) or oil (better constituent-wise, but both will work) internally, very high in flavonoids which are nerve anti-inflammatory, according to Potters Herbal Cyclopedia. CAUTION: Check with your doctor or pharmacist first, this can interfere with the absorption of a lot of mainstream drugs and must never be combined with MAO inhibitors or SSRIs because it is itself a MAO inhibitor.
Vitamin B 12 injections are given to MS patients with good success, according to the reference manual Alternative Medicine: A Definitive Guide. B12 is a nerve anti-inflammatory and apparently with MS patients the injection works (better than oral).
The above information has not been evaluated by the FDA and does not diagnose, cure or prevent any disease. Be sure to ask your doctor about anything mentioned here before you implement any ideas presented here. This is not medical advice, this is for your education only, not for self-treatment, talk to your doctor.
Posted by lajamur (Member # 24593) on :
Hi seek,
I just wanted to let you know that I think I'm going through something somewhat similar.
I had a dilated exam and visual field test and all SEEMS normal but I've had a spot in my peripheral vision and eye pain on the left side for the past year and a half.
Within the past week it has spread to the other eye -- I now have subtle spot in the bottom of my visual field in the right eye, as well as pain in that eye socket.
These are fixed spots, not floaters. It is scaring the heck out of me because I am so afraid of losing my vision.
I also have been feeling very lymey in general lately, night sweats and fatigue flaring up etc.
Finally got an RX for doxy from my LLMD yesterday so will be starting that next week and hoping to see some improvement with the eye thing.
Anyway I just wanted to share my story with you and say that I understand what that anxiety is like -- it's terrible.
Keep us posted and let me know if you ever want to talk more. I'm in my late 20's. We are too young for this cr*p!
Posted by bigstan (Member # 11699) on :
Seek my neighbor, you know about the terrible eye problems I have. Blurry vision, 1000's of circular floaters, a 1/2 inch wide floater on my wall or wherever I look that coils up and in the morning I uncoil it by darting my eye back and forth.
Strange stuff indeed for a strange strange disease.
Try not to worry about what's going on, I'm sure it's Lyme and friends having a party at your expense.
I've had the lumbar puncture, I've had many CT scans (over-radiated 4 sure), and MRI's of the brain and no lesions. I don't have MS. My eyes are just so screwed up from this disease.
Seem like we got it bad in Mich.
Anyways, if you want the LLMD neuro-opth in MI let me know I see him next week.
Also just curious if Dr M ever looks at your eyes during your visits. He does me all the time and the last time he thought that I had Arteriovenous Nicking. Which is caused by high BP.
But my BP is decent only when I herx it goes a little higher. Anyways you might want to ask your eye doc today about Arteriovenous Nicking.
Posted by seekhelp (Member # 15067) on :
Well, I saw the retina specialist Fri morning. Fortunately, he said there is no damage to the retina in anyway. He had no major concerns. He dilated my eyes again and did a few special scans. He did say my pressure was 'mildly' elevated, but not major.
I need to follow-up with my regular eye doc in a month. Why on Earth the main doc refused to give me my script for lenses is beyond me. He said I have major eye strain due to being farsighted and script change.
Bigstan, MI must have a brutal Lyme strain.
I'm concerned because every year my script changes a lot (for the worse). I hate having to wait a month to get my new glasses. Don't understand. The only thing I can guess is they are concerned the pressure is temporary and artificially changing my eyesight.
Yesterday, my eyes felt a little better. Last night (huge full moon - lol), I started to feel terrible and have not recovered. My eyes feel very, very strained, arms feel like lead, balance off, head pressure, stomach issues, etc. It came out of nowhere. I'm very, very fatigued.
Dr M does check my eyes Bigstan. He never finds much honestly. I STILL never heard back from them yet.
If you could give me the LLMD neuro-opth's contact info via PM, I'd appreciate it. Did he do anything regular docs don't? The retina specialist AND regular eye doc said zero signs of Lyme damage to my eyes???? I just have no idea what they're looking for when they say it.
Rumigirl, I see multiple docs - high profile LLMD and local doc. The high profile LLMD has been pretty useless as they just have refused to do hardcore Abx treatment since my suspected C-Diff episode in late Oct-10. I've been off Abx for 5+ months now. I tested 3x and was negative for C-Diff all times, but they think I could've had it.
Posted by bigstan (Member # 11699) on :
Ok will do I will send a PM in a few. He is recommended by the Mich Lyme Disease Association.
I just don't get it when you say this "very thorough well respected doctor" tells you "my left optic nerve is significantly inflamed".
Then the retina specialist sees nothing. Although he did say pressure midly elevated. I don't think that is the same thing as the optic nerve being significantly inflamed. If it was me I'd call the first doc back and say WTH.
Getting you all worried for nothing. Anyways glad it's not as bad for sure. Will send pm shortly.
Posted by seekhelp (Member # 15067) on :
Yes, I certainly am going to call my original eye doc back. Unless I'm missing something, he really scared me for nothing. When someone says you need to go see a specialist that night, it's terrifying. What else am I supposed to think? Posted by Shahbah (Member # 28735) on :
seekhelp, has any doctor checked you for Behcet syndrom?
Posted by seekhelp (Member # 15067) on :
I don't think so. I have no idea what it is Shahbah.
Posted by Shahbah (Member # 28735) on :
It`s an inflammation of blood vessels, look it up over the internet, it`s quite hard to diagnose but it does cause brain swelling, eye inflammation...
Posted by sickntired19 (Member # 21949) on :
I couldn't read any of the above comments but I would say to go ahead and get your eyes checked out!
I went in for a regular eye exam in December and here they found my optic discs were swollen and hemorrhaging. I had been having so strange eye issues, including the feeling of them being pushed out of my head, but I always just chalked it up to LD.
I had to see an eye specialist, then a neurologist, have many eye tests done, an MRI, and a lumbar puncture and basically, it all came back clear. So it was "just" Lyme. But I went off my meds for about 3 weeks and it all cleared up on its own.
I still have a little bit of swelling and lately I've had severely "blood shot" eyes, went and had it checked out and the eye Dr. said that basically it is the auto-immune part of the Disease.
I hope that you can get it figured out, I know that pressure is pretty uncomfortable! Let me know what you find out!!
*BEST*
Posted by madge (Member # 13704) on :
this may not help but here goes...my hubby has had bad head and eye pain for over 9yrs...his eye dr said he had glaucoma...his eye pressure was 27.. normal is around 12...
4 1/2 yrs ago found out he has lyme...one yr later into treatment his pressure dropped to 18.. 6mts later 14...
i then reminded her that he has lyme..and could this not be glaucoma...of course she never heard of of that...but his lyme dr thinks its due to lyme.
well now 4 plus yrs into treatment his pressure is now 12...and last yr he stopped his eye drops everyday...he eyes are so much better...
in fact he is now watching tv..he is watching movies now...first time in years...
this disease can cause so many side effects that can look link other diseases....Madge
Posted by Shahbah (Member # 28735) on :
sickntired19, what did your doc suggest you to do about the "autoimmune" part of the diesease... I belive this disease drive the immune system crazy but how do you control it?...
Posted by Shahbah (Member # 28735) on :
Seekhelp, you should also get tested for food allergies, it will make a hudge difference if you know what to avoid... for some weird reason there seems to be a direct connection between stomach and brain in terms of inflammation...
Posted by seekhelp (Member # 15067) on :
I've been tested extensively for food allergies and they can find nothing. I've had skin prick testing, food patch testing, etc. I'm out of ideas.
Posted by Shahbah (Member # 28735) on :
blood tests for allergies too? even gluten? I think of of us here are gluten sensitive...
Posted by sammy (Member # 13952) on :
Seek, how are you feeling today? Are you still having severe eye pressure or has it started to subside some?
Hugs, I'm praying for you.
Posted by Lymetoo (Member # 743) on :
gluten .. could be
Posted by aMomWithHope (Member # 19255) on :
Bringing this back up to see how it all turned out.....
Any updates, Seek?
(DD is complaining of horrible eye pressure, so am wondering what to do.)
Posted by karenl (Member # 17753) on :
I got sick after steroids, I would not take them.
I used eyedrops in my left eye for some weeks and now it is better. The name is: Ag-OPTIC distributed by MPS Research
It is mild silver protein. I have no inflammation of the nerve but I think the drops killed something off. The pain is over.
Posted by seekhelp (Member # 15067) on :
Good timing as I actually see my opthamologist tomorrow for my follow-up. I'm still having all kinds of eye problems - pressure, mild pain, blurry, super shaky when staring at the computer screen. I was trying to do a bit of work tonight and had to stop after 2 hours. I noticed I was literally trembling from looking at the LCD screen. Very worrisome.
My eyes just refuse to stay in focus. Terrible head pressure too and brain fog.
Posted by Robin123 (Member # 9197) on :
I know we're all different when it comes to how we respond to treatments, but for me, drinking mangosteen juice stops my Lyme eye symptoms. I drink the Ultra and mango-xan versions. If you try it, go slowly and drink a lot of water too.
Posted by Shahbah (Member # 28735) on :
Robin, it's strange, you're about the only one who advocates mangosteen juice, many of us have tried it (including me) with absolutely no result... So what's the secret?:-)
Posted by seekhelp (Member # 15067) on :
Back from the eye doctor. Basically he said everything looked OK, except I had very mild pressure build-up in my eyes. He said not enough to cause symptoms.
Apparently, my current glasses are not even close to correct from a script perspective. I may also be mildly cross-eyed too based on a test. He said with a new script I should see all my head pressure, eye strain/pressure/pain go away. I'll sure as hell try, but I'd be willing to bet serious money it won't be that much of a miracle.
I just feel terrible. My head feels really swollen, bad headaches, fatigue, eye strain, horrid brain fog / concentration issues, extremely jittery, and more. I'm not running a fever or anything, but this is the worst my head has felt in years. The last couple of days I've literally been trembling at times for no reason. I'm worried. I hope I don't have something bad going on. Posted by aMomWithHope (Member # 19255) on :
Seek--
Thanks for the update. Happy to hear that your symptoms aren't something serious---I know that doesn't help with all the pain you're still in.
Are you taking Plaquenil or Mino--Plaq can cause eye issues, and Mino can cause bad head pains? If yes to either of those, I'd definitely call your LLMD and let them know--even if you're not, you might want to call your LLMD to let them know how poorly you are feeling.
I hope your new glasses give you the relief you need--I'll be thinking of you and sending healing thoughts your way!
Posted by Shahbah (Member # 28735) on :
seekhelp, since you've been to neuros, eye doctors, and co with no result, maybe it's time to examine your gut, have you ever checked for stomach and gutinflammation, don;t forget tat we have more nerve endings there than in the CNS but they do fire inflammation to the brain ... Seriously you have to do that... you should also try high doses of activated charcoal, and aloe vera, if they help (even just a little) it will be a good sign that your problems are coming from there (just like the majority of us...)
Posted by lyme987 (Member # 22148) on :
All this sounds like bart= I've been fighting it for over 20 years-the pressure and pain in the eyes, pressure in the head, etc.
Have you been tested? rifampin is my new best friend-hard to handle but really works for me
Posted by Shahbah (Member # 28735) on :
wow lyme987, 20 years of bart sx, i hope you had remissions in between... have you been treating it for 20 years? i can't imagine that...unless it is not Bart...
Posted by seekhelp (Member # 15067) on :
Shahbah,I have had several tests come back abnormal for gut inflammation. Ironically, activated charcoal is the only thing that ever helps me.
Diagnos-Techs showed a very, very elevated alpha anti-chymotrypsin stool test (normal <60, mine was 451). My upper endoscopy showed severe Eosinophilic Esophagitis -Ee. My Gliadin antibody IgG was off the charts high highest doctor ever saw.
I have never tried Aloe Vera. I'm gluten and dairy free and have been since mid 2008. No help really.
I haven't had any alternative doctor comment on my gut issues. Lyme docs think it's Lyme/Babesia/Bartonella.
My question is who has ever been cured/helped by gut improvement here? GiGi says AI is the only hope for it. However, 50 pages on that thread and honestly few if any claim to be even a speck better than when they stated taking these drops. That's very disheartening.
I feel like I'm fighting a losing battle and the ship is going down fast.
Posted by seekhelp (Member # 15067) on :
Lyme987, funny you said that. My recent LLMD said all previous LLMDs were wrong on my diagnosis and grossly missed Bartonella. I'm supposed to start Levaquin next week. I'm scared, but just a glimmer it may help me makes the risks worth it. I can't live like this forever so I need to take big risks.
I've tested negative for Bartonella Quintella and Hensalae 8+ times now in three years. It must not be one of the common strains I have IF I have it. Posted by Shahbah (Member # 28735) on :
wow seek, then this is your answer!! it's all from your gut, so you mean charcoal does NOT help you or does? Aloe Vera helps reduce inflammation in the gut as well as coconut oil, you should add both and give it at least four months to see some result... and sorry to let you know that, but antibiotics are really hard on the stomach and gut so they just add to the inflammation there...
Posted by Shahbah (Member # 28735) on :
and by the way, I guess you saw a regular GI doctor after those results, what did he say?
Posted by seekhelp (Member # 15067) on :
Charcoal has helped a good amount when 'herxing' if that's what it is. The most I've ever taken is 2-3 capsules daily.
I've seen 2-3 GI docs. All cared absolutely less about my stuff. Their only answer for Ee is inhaled steroids unless you can identify an allergic trigger - usually foods. I went through extensive food allergy testing via skin prick, patch, etc. and nothing showed.
No conventional doc gives any credibility whatsoever to alternative labs like Diagnos-Techs so that was useless.
Posted by Shahbah (Member # 28735) on :
oh 2 or 3 capsules how much is that?, I take at least 2g a day and believe me it will help your headaches... as for food allergies, you can proceed by elimination, for example i realized I am allergic to garlic (which is known to be full of benefits... well, it doesn't agree with my stomach..). and that was confirmed with blood test for allergies... you have to get blood tests for food allergies... Don't eat chocolate either:-)
![[Smile]](smile.gif)
I couldn't even imagine. Sammy, I probably will go to the eye doc soon if it persists. Thanks.
![[Frown]](frown.gif)
The right side is fine. He wanted to send me for another lab immediately for further testing, but the retina expert was out for the day. I think he mentioned an angiogram or something. I asked him possible reasons for inflamed optic nerve and he didn't go over them all. He didn't want to jump to conclusions w/o further evaluation.