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Mergirl
Regular Member


Date Joined Oct 2017
Total Posts : 205
   Posted 12/22/2017 2:06 PM (GMT -6)   
Back yet again with another question(s) smile



Still struggling with most of my original symptoms. Especially cognitive/memory/trouble thinking, confusion, depersonalization, etc.


A few of my other symptoms seem better one day and not the other. But this is specifically about my eyes and ears.


Still getting eye burning, red eyes and blurry vision that comes and goes. I feel like it might be a herx because sometimes it seems like it comes on after taking my abx. But also comes and goes at other times as well.

Taking abx, a few herbs which I'm still stuck at afraid to add many more and diflucan. I'm just over 2 months into treating. Should these eye symptoms resolve over time? Is this just part of my herxing? I am doing a lot of detoxing and honestly don't know how much more I can add at this point.

The eye burning also occurs with the confusion, brain fog, etc. Will this ever go away? I know I should see an eye doc but none around me are lyme literate.


As far as ears go, I've had horrible tinnitus and blocked ears, clicking in ear since the get go and worsened after I started taking abx. Now, in the past couple weeks, the tinnitus itself seems a little bit better/ not as loud/ severe. ( Almost afraid to say that rolleyes) Definitely still an issue though. My blocked ears are still here though.

My question about the ears, would that particular symptom make my neuro/ cognitive issues worse? Is there a connection? I have heard of meniere's disease and was trying to get tested before my lyme diagnoses but all of these symptoms are on the master lyme list. I also have Bart my llmd believes. Also, should this symptom clear up for anyone? Blocking/hearing loss, etc?


I miss my brain will do anything to get it back. Know I have said that before here but just how I'm feeling. But the burning eyes and blocked ears certainly don't seem to help.



Thanks everyone.

KB69
Regular Member


Date Joined Jan 2017
Total Posts : 236
   Posted 12/22/2017 2:19 PM (GMT -6)   
Hi Mergirl, I understand how you are feeling. It's so hard to be patient when you're feeling unwell -- particularly when brain symptoms are at their worst. That said, 2 months of treatment is not a long time, especially if you didn't catch the infection right away, and you could well begin to see more improvement with your current regimen soon.

I have a lot of the symptoms you describe, and they all get worse when I herx , especially now, as I'm treating Lyme with Bicillin shots. When I was treating Babesia, these symptoms were not an issue. But, in targeting Lyme, it's really stirring up my neuro symptoms -- burning, brain fog, tingling, etc.

In my case, I also think the Bicillin is working and my Bartonella infection, which I have yet to treat, is emerging more strongly. While there is little Lyme does not impact, my LLMD has consistently stated that eye involvement is often also linked to Bartonella. Are you currently treating Lyme and Bart or just Lyme?

To give you hope, I had blocked ears as an early symptom, and I haven't had that issue in over 6 months. So, I firmly believe your eye and ear issues will resolve in time with the right treatment.

Finally, I saw an ophthalmologist several months ago when I was considering plaquenil (which can impact the eyes). Amidst all of my eye symptoms -- burning, eye socket bone pain, intermittent blurry vision, etc. -- my eyes were "completely normal." You can always see an eye doctor to rule out other issues, but Lyme and Co's can really wreak havoc on the eyes.

Hang in there and keep treating. It might take some time, but you can make progress with all of these symptoms!

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33899
   Posted 12/22/2017 6:58 PM (GMT -6)   
Mergirl - as KB69 mentioned - 2 months is a short time of treatment.

I wanted to mention I have pulsatile tinnitus. it's not a ringing in my ears...instead it's a 'swooshing' sound - that seems to be in tempo with my heart beat. I only feel/hear it now slightly...very slightly when my ear is on the pillow. ...and only my right ear now.

Hang in there....
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

goshawk
Forum Moderator


Date Joined Sep 2016
Total Posts : 2299
   Posted 12/23/2017 7:11 AM (GMT -6)   
Hi, My eye issues and ear issues did go away with treatment but after about 6 months.

Only when I have had a herx with treating Bartonella did the ear thumping and minor eye issue(blurry/foggy) return but with lots of binders and detoxing it has gone away again.

The Jernigans Neuro Antitox cns/pns has mad a difference for me lately too.

Hang in there and hope this resolves soon for you, Take care, Jo

Suzee
Regular Member


Date Joined Jan 2016
Total Posts : 317
   Posted 12/23/2017 7:47 AM (GMT -6)   
Eye and ear issues have been the absolute bane of my lyme life sad However, I am delighted to say they have improved greatly in recent months since using Buhner lyme and bart protocol and also Vinpocetine supplements have really helped with these two issues. I had periods where my hearing was significantly impaired and 'glue' ear and pulsing and throbbing in my ears when trying to get to sleep.

I was rushed to the eye hospital when I went to the optician for a routine eye test and my glaucoma readings were off the scale !! This has now come within the normal parameters and so far there is no lasting damage to the eye nerves, retina etc. but I still go for check ups.

LymeSick 🌟
Regular Member


Date Joined Aug 2017
Total Posts : 234
   Posted 12/23/2017 8:25 AM (GMT -6)   
Hey Mer have you tried Stephania for eye issues?

I will try to find some information for you about it.

Mergirl
Regular Member


Date Joined Oct 2017
Total Posts : 205
   Posted 12/25/2017 10:05 PM (GMT -6)   
Just wanted to respond to everyone who posted on this thread. A big thank you to everyone who did so.

KB69 -

Well, technically treating for two and a half months as if that makes much of a difference right? lol Been sick on and off for 12 or 13 years now at least but had no brain involvement really until the last year. A lot of things happened this year that could have made it much much worse. Mold, steriods, etc. Bad, really bad.

Thanks for your reassurances. I think I think I should probably see an eye doc. The frustrating thing is the blurriness tends to come and go. Before I got really sick I had almost perfect vision also. Trouble is finding a lyme literate eye doc around me. They just don't seem to exist.

I do get the brain fog and red eyes as well but the confusion is more troubling. It's a complete brain and emotional numbness. Unable to think, rationalize or feel. Christmas with my family last night and today was very very difficult. I was so , so out of it.


I don't understand either because nothing seems to be helping much that I try that others have suggested like lots of Pinella Burbur and neuro antitox and I'm detoxing as much as possible. I know it won't be a miracle thing over night but I felt so out of it and disconnected from everyone the last couple days. I felt so stupid and unlike myself. And I feel my thinking or trying to think has only gotten worse with treatment. Not better.

Veru scary and depressing. I used to really love the holidays. Even when I was in intense pain I used to enjoy myself more. Now it's like everything is in my brain and I don't know when or if it will ever let up or just continue to decline.

Was the ophthalmologist you saw lyme literate? DO you think it would matter? Maybe I should just try a regular one. My eyes are so red, I'm sure my family must have thought I was stoned between that and my spaciness and not speaking to anyone. lol


Girlie - Thank you. Just wanted to ask if you noticed a connection between that swooshing sound and brain symptoms? Or did they seem like two separate things?


goshawk- Thanks again. I've been doing the neuro antitox and heard such good things but I don't undertstand why it doesn't seem to be helping me much? It's been around a month and half to 3 quarters of a bottle. Should it take longer then that to see results with it? I'm not sure if I should invest in another bottle at this point or why I don't have the success with it others seem to?


Suzee - Mine are driving me crazy too. Eyes and ears that is but not as much as the brain damage feeling and depersonalization. This is so hard. I thought just maybe at this point it would be a little better. Not worse. I know my tinnitus is still around but not as severe. But the other stuff is very stubborn. It's so hard to get through everyday feeling so out of it and confused. It's making me feel so hopeless. I missed feeling like myself around my family today. I've also been taking the vinpocetine as well but don't feel like that's doing much either.

Lymesick- That would be great, thanks! I know Buhner recommended it somewhere for an eyewash or something? I just got a Stephania root tincture too. So far I'm just starting it. I think I may have to cut back or out the herbs for a while. I think maybe one or a combo is making me herx. Still not sure though. Very confused. I'm still trying to slowly work up doses but I admit, I'm still not sure what I'm doing because I'm always so out of it. But I just started adding a drop or two to the herbs I already started on. Now not sure if I should wipe the slate clean or keep going.



Anyway, I appreciate all the feedback and suggestions. Happy Holidays to everyone!

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33899
   Posted 12/25/2017 11:44 PM (GMT -6)   
Mergirl - I also have brain symptoms - I don't know if they are linked to my tinnitus.

The tinnitus is almost non existent now but I still have pressure in my head behind my eyes. It got really bad when I was taking Mepron for Babesia - felt like my head would explode and my eyes were going to pop out.

I also have short term memory issues - and lately it's gotten worse which is really discouraging and actually frightening.

Re: eye Dr. I went to one awhile back and she wasn't lyme Literate really, but she checked everything out - checked for any swelling/inflammation of optic nerve. She looked at the back of my eye; also recommended a Field test - so I did that too.
She listened to me and my concerns about having Lyme and reassured me that she would do a thorough exam to check my eye health.

I think even one that isn't lyme Literate can do a good exam to check your eye health.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Post Edited (Girlie) : 12/25/2017 9:48:18 PM (GMT-7)


Mergirl
Regular Member


Date Joined Oct 2017
Total Posts : 205
   Posted 12/26/2017 9:05 PM (GMT -6)   
Girlie said...
Mergirl - I also have brain symptoms - I don't know if they are linked to my tinnitus.

The tinnitus is almost non existent now but I still have pressure in my head behind my eyes. It got really bad when I was taking Mepron for Babesia - felt like my head would explode and my eyes were going to pop out.

I also have short term memory issues - and lately it's gotten worse which is really discouraging and actually frightening.

Re: eye Dr. I went to one awhile back and she wasn't lyme Literate really, but she checked everything out - checked for any swelling/inflammation of optic nerve. She looked at the back of my eye; also recommended a Field test - so I did that too.
She listened to me and my concerns about having Lyme and reassured me that she would do a thorough exam to check my eye health.

I think even one that isn't lyme Literate can do a good exam to check your eye health.



I think I'm going go try to find an eye doc locally than just to test things out. I'm really hoping the eye stuff clears up with treatment a long with everything else.

I apologize if I asked this before or you already explained but would you mind describing your brain symptoms? Do they sound similar to mine?

How does everyone deal with the brain not working or just feeling like an emotionless zombie when having to deal with others? I feel so isolated lately and I know I lost my identity a long time ago but I'm worried that this is making my depression worse. On the other hand, I feel like an idiot just saying anything. I'd love to make some new friends for support since my old ones gave up on me long ago. But this makes it hard to talk to others at all never mind be social. I feel like I go days and weeks without talking to anyone. If I do it's usually though text or email.

Just really down. Thanks girlie for your post.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33899
   Posted 12/26/2017 9:25 PM (GMT -6)   
My brain symptoms have evolved over time.

In 2013 - after the first lyme symptoms, I developed some alternating bouts of anxiety with depression.
It was horrible. I felt like I didn't know who I was ( my husband was worried, too)
I kept saying "I don't know who I am anymore". And he couldn't understand what I meant. Heck, I didn't even know what I meant.

Even before diagnosis and treatment, those symptoms subsided.

Then a few months later...I would wake up every few hours during the night, in a panic, gasping for air...often sweating.

Now my main concerns: short-term memory loss, and pressure in my head behind my eyes. The pressure behind my eyes ramped up when I was on Mepron..and it was rather scary at times. It felt like my head would explode..and my eyes would pop out. (maybe slight exaggeration...lol)

I think my CNS is also responsible for the shivering that runs up and down my spine and sometimes down my legs. It's almost as bad as my nerve pain.

Is there a support group near you that you could go to?

I'm fortunate that I still have a few friends that I can see. One is quite supportive and she listens to me talk about lyme and my symptoms. I see her every couple of weeks.

I feel like I've been on the outside of life - looking in as it goes on around me. Feel like I've missed out on so much.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Mergirl
Regular Member


Date Joined Oct 2017
Total Posts : 205
   Posted 12/27/2017 3:10 PM (GMT -6)   
Girlie said...
My brain symptoms have evolved over time.

In 2013 - after the first lyme symptoms, I developed some alternating bouts of anxiety with depression.
It was horrible. I felt like I didn't know who I was ( my husband was worried, too)
I kept saying "I don't know who I am anymore". And he couldn't understand what I meant. Heck, I didn't even know what I meant.

Even before diagnosis and treatment, those symptoms subsided.

Then a few months later...I would wake up every few hours during the night, in a panic, gasping for air...often sweating.

Now my main concerns: short-term memory loss, and pressure in my head behind my eyes. The pressure behind my eyes ramped up when I was on Mepron..and it was rather scary at times. It felt like my head would explode..and my eyes would pop out. (maybe slight exaggeration...lol)

I think my CNS is also responsible for the shivering that runs up and down my spine and sometimes down my legs. It's almost as bad as my nerve pain.

Is there a support group near you that you could go to?

I'm fortunate that I still have a few friends that I can see. One is quite supportive and she listens to me talk about lyme and my symptoms. I see her every couple of weeks.

I feel like I've been on the outside of life - looking in as it goes on around me. Feel like I've missed out on so much.



I can relate to a lot of this. Early in 2016 is when my anxiety and depression really really ramped up. Going back years now, I realize that my chronic anxiety was probably lyme all along. Of course I was medicated and it got better.

For 8 years I took the same anti anxiety med and suddenly last year it just stopped and all my anxiety and depression came back like a ton of bricks. But then, as of earlier this year especially after taking the steriods that I believe are responsible for my sharp decline (plus mold and possible reinfection) I started to feel nothing at all. I still feel nothing. Blank. Just constant fear of the problems I have thinking or remembering things.

I was drugged for so many years both with antidepressants and pain meds, I honestly thought for months that getting off all of that was the reason why I didn't feel like myself at all. I still don't. Infact, the cognitive stuff almost seems worse on the abx and herbs. Hard to tell though.

I've been trying to find a support group here for over two months now. I think I may have found one and emailed the administrator just today but I tried that with a facebook group here a couple months ago and received no response so we'll see if I get one now. I don't understand it. Lyme disease is absolutely everywhere here and it's been so hard to find any groups or support. I found a meet up group but they don't seem to "meet up" all that often.

I know I have missed out on soooo much. I haven't been able to work in almost 7 years which means no life either in almost 7 years. I feel so behind and not to have my brain working at all, I feel like I'll never catch up. It worries me that that symptom feels worse then before.

I get a little clearing now and then, but not much. My llmd also took me off one of my abx which I still don't understand. So the fact that I'm no longer on a combo worries me to death. If anything I feel like I should be on more, not less. I'm at a loss.

Speaking of eyes, have you or anyone reading this, were your eyes extremely bloodshot and sometimes burn? I never saw all of this blood vessels in my eyes before and they look so glassy. This has only happened in the past year.

If I have had this for over a decade now and I believe I most certainly have, why would this happen just in the last year and not before? Will they ever clear back up again? I see no signs of this getting better so far. I'm wondering if something else might be causing it or just lyme or bart? Or perhaps another coinfection.

I should just get "confused" tattooed on my forehead at this point. I guess it's preferable to people just thinking I'm stupid. Which i feel constantly now.

That's awesome that you have a few friends to talk to and who are supportive. I really wish I could say the same although, if I can't recognize myself anymore, I guess I shouldn't expect my old friends to either. My personality is just blank now.
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