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» LymeNet Flash » Questions and Discussion » Medical Questions » Now it's my eyesight failing...

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Author Topic: Now it's my eyesight failing...
Melanie Reber
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Hello all,

I am wondering if any of you have experienced what I am now going through and if you can offer any words of advice.

A few months ago, my close-up vision began to get blurry. But ONLY when I would look away from the comp. screen and back again. As if the focusing mechanism was broken.

With a few minutes of only looking at the screen, things would come back into focus again. This steadily became more pronounced, and then I could not focus at all close-range.

I figured it was just my age, and it was time to get some dime store reading glasses...so I did. Amazing...they helped SO much, but only for a week or two.

Then, my mid-range vision began to get blurry as well. A week later...and now far-range is also out of focus.

Plus, even with the readers, close-range is getting more and more blurry. Even when I increase the font size to the largest possible.

Remember, only a few months ago, I had absolutely no problems using the highest screen resolution, which means the font size was very small.

So, I guess what I am saying is that my eyes will not focus at any distance now.

I'm currently on three known meds that can cause blurry vision:

Amitriptyline
Methazolamide and
Plaquenil

None of these are new to me, and when taken before in the past, I did not experience any side effects from them at all.

I am well aware the Plaquenil can do some major damage, and that is why a baseline eye exam is strongly suggested before beginning it, and follow ups are also suggested.

I did have a baseline done about 5 years ago before the first time I began it, and all was perfectly well with my eyes.

So, with all that in mind... have any of you experienced this sudden and profound vision change? Was it due to your meds? Or, was it simply TBDs doing their thing?

And... are there any suggestions for me?

I have my next LLMD apt on Thursday... and thought I would also ask my pharmacist today if any of my other meds could be causing this too.

I'm not sure if this warrants a call into the doc, so I don't want to bug them if not absolutely necessary.

Any advice would be lovely and so appreciated.

Thanks so much in advance,
Melanie

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2roads
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Melanie,

I'm sure others will come on to help, but I can only say my son is suffering visually.

I don't know the cause...the possibilities are endless. But, I'm pretty sure it's affecting his ability to focus on things.

He suffers close-up with reading and writing, and I know at times from a distance.

We are going to an Iridologist in two weeks and a Neuro/Opth next week.

Neither are lyme related. The Neuro is for potential injury and the Iridologist is for whatever he finds, but he's already leaning toward parasites.

If something hopeful comes up I'll let you know.

Well wishes,

Greta

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Leelee
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Melanie, I am sorry about your vision problems.

I have similar symptoms and as of yet have not found an opthomalogist who can help me.

My close range vision started to become blurry when reading the newspaper, books, magazines, etc. It progressed to the computer. Then to middle range and eventually distance too.

Now all three areas are affected and I have had so many eye glass prescription changes in the last year I can't even keep count.

I also experience extremely dry eyes and it is not possible for me to wear my contacts any more.

I hope you find an answer. I know this is a most frustrating problem. I think it is Lyme-related for me.

--------------------
The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr

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Carol in PA
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quote:
Originally posted by Melanie Reber:

I'm currently on three known meds that can cause blurry vision:

Amitriptyline
Methazolamide and
Plaquenil


I am well aware the Plaquenil can do some major damage....

I have my next LLMD apt on Thursday...

Melanie,
You need to find out if you should stop the meds.

If they are doing something to your eyes, you don't want to take them another week.

Carol

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Jane2904
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My daughter eye sight is fine, but she has a focusing problem.

Two years ago she did vision therapy to correct. The therapy worked.

Bascially, when she would read , she would get a headache. Reading glasses only helped for a short while, then the headaches came back. The therapy worked.

Now, the problem is back again. She was diagnosed with Lyme last summer and noticed the problem again this past fall.

Not sure if Lyme related.

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Carol in PA
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Plaquenil: 10 Things You Should Know

6 - The rare side effect which affects vision, known as hydroxychloroquine retinopathy, if caught early, may improve after plaquenil is stopped.
It is not always reversible though.

Since the side effect of vision loss is so rare it is important to tell your doctor about any changes you notice to your vision.

Some doctors recommend regular eye exams while on plaquenil to catch early changes.
Once abnormalities are discovered, toxicity has occurred.

http://arthritis.about.com/od/plaquenil/a/plaquenil.htm

-

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Lymeorsomething
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I hated Plaquenil...when I tried it a while back, I had eye strain within the first few weeks...as well as bleeding gums...

--------------------
"Whatever can go wrong will go wrong."

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2roads
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Jane,

What did the vision therapy for focusing entail?

How long were the sessions(how many weeks and hours of the week) and what was done? Did you work at home and if so, what did you do?

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Tracy9
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I would be very concerned about the Plaquenil.

--------------------
NO PM; CONTACT: [email protected]

13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG.

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Jane2904
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2roads sent you a PM.
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Melanie Reber
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Thanks so much to each of you.

I am so sorry 2roads, Leelee, Lymeor and Jane for what you have dealt with too. It is especially difficult to know that children are suffering.

Thanks as always Carol. I know it isn't recommended to just stop the first 2 meds, without issues. But I don't think there is a problem with stopping the Plaquenil now.

I'll skip my evening dose and try to speak w/ my Pharm tomorrow. (wasn't able to get to him today)

...

BTW... in the future, I would appreciate it if you would not reply on my posts Tracy9. Thank you in advance for respecting my request.

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Patti C.
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Hi there,
You got some great replies from others. If your blurred vision is due to problems with Plaq., perhaps your doc can switch you to Mepron.

I couldn't tolerate Plaq. either, and got a serious eye inflammation condition called epislceritis, which lyme itself can also cause. My vision also deteriorated tremendously when I first became infected.

My doc said the Mepron can substitute for the Plaq., and the way it can kill the 'ketes. Mepron is an anti-protozoal and is used for immune-suppressed individuals who have pneumonia or sometimes AIDS. That tells you it's a hard-core med.

I don't know if any of this helps, but I wish you and your family the best.

Perhaps

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bettyg
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melanie,

i was on amytriptiline, but not 2 others you're on.


if you look at a small tick, tac, toe card .... GRID; are all the lines straight and going across? if not, MACULAR DEGENERATION is beginning...


i've recently gotten new pc RX glasses; i have 4 pair ... each for their specific thing! my new ones are NOT working out; i can't see clearly; things are blurry; so i've been trying to adjust to a new RX this week. will have to go back in to see what can be done.


do you have an LL eye specialists in your area? best wishes, and keep us informed what you find out. [group hug] [kiss]

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Melanie Reber
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Thanks MFT,
I have only been on Plaquenil this time around for 6 weeks. So, I'm not sure if that counts as long-term? I can't remember how long I was on it before but that was years ago.

Yes, unfortunately I have plenty of other things going wrong at present. Mostly new things, but rather serious.

Hi Patti,
Actually I am on Mepron/ Zith/ Art/ Plaq now. So sorry that your vision was affected as well. Thanks.

Hey Miss B,
Hmmmm, I'll have to find a tic-tac-toe card to look at to test your test. [Smile] I know your vision has been very troubled, so sorry for that.

I'm not sure if there are any LL eye people around here, but after speaking with TC tonight, we are surmising it may be due to the toxin load causing inflammation. (she actually IS my LL eye specialist... shhh, don't tell, but she works for cashews)

Thanks again to each of you. M

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charlie
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Melanie...google 'amsler grid' or 'macular degeneration' and you'll come up with all kinds of those grids you can use on your screen or print out and directions on how to use them.

BTW my focusing ability's been off for a long time when looking at a TV screen then a computer monitor...very slow to adjust between the two, don't know what to attribute it to.

Charlie

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Melanie Reber
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Thank you Charlie, my friend.
I will look for those now. I'm so sorry your focus stuff is off too...it is rather disconcerting, isn't it?

M

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Melanie Reber
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Charlie,
Your suggestions led to a great website:
http://www.stlukeseye.com/EyeQ/amsler.asp

I looked at the grid and did not see any waves or missing areas, so it doesn't look to be macular degeneration, thank Goodness.

Then, I started to read about all the eye tests... very interesting.

Then I read about all the various eye issues, and came upon one that MAY possibly fit for me... Diabetic Retinopathy.

http://www.stlukesretina.com/html/diabetic_retinopathy.html

I KNOW that my insulin levels are way below normal, and there are many diabetics on my mother's side of the family. My LLMDs have all told me to watch my insulin levels due to symptoms that led them to have suspicions of hypoglycemia.

But, I don't really know how one tests for diabetes? Or Pre-diabetes?

They have also told me to look into following a low glycemic diet... but I don't even know what that is yet.

Anyway...just one more lead to ask about at my next appointment. Thank you!

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TerryK
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If it were me, I'd get off the plaquenil until I knew that it was not causing damage. I'd also get to an eye doctor for an evaluation ASAP.

That said, I've had blurred vision off and on since I first started going downhill 20 years ago. It has been very bad off and on since starting lyme treatment.

I eventually figured out that my blurred vision responds well to detoxificaiton measures. My visual contrast sensitivity test through Dr. S's site showed negative before treatment and positive after I started treatment. We know toxins can affect vision.

I step up my detox regime when my vision gets worse and that often does the trick.

I have found that wheat grass pills help. Also helps with brain symptoms when I feel toxic.

Drainage remedies (recommended by my LLMD) have been very helpful such as Pekana detox pack and L-Drain, K-Drain and H-Drain by TransFormation. There are other drainage remedies if you look around. Also glycine 3X's per day.

Then biotoxin binders such as:
cholestyramine
butyrate
Charcoal (may bind biotoxins)
Chlorophyll
NanoTek Chitosan
modified citrus pectin
Sarsparilla
Cholestepure by Pure Encapsulations
Beta-sitosterol

Hope you get it figured out soon.

Terry

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Melanie Reber
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Good Morning Terry,

Yes, I know I have toxin issues and do not detox well. My doc told me to take CSM and liquid glutathione to help.

But, because I started on SO many meds all at once, I couldn't figure out how to fit them into my med schedule.

TC suggested that I start the Glut last night, and I did... so we shall see if that helps. She also suggested dandilion root tea... and I finally found that and have begun it too.

I still can't figure out how to fit the CSM into my schedule... so it sits on my counter.

I did stop the Plaquenil, so hopefully that will help as well.

I'm so sorry that you have suffered so much with this. Thank you for always offering such great advice, it is appreciated. M

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bettyg
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quote:
Originally posted by Melanie Reber:

Charlie,
Your suggestions led to a great website:
http://www.stlukeseye.com/EyeQ/amsler.asp

I looked at the grid and did not see any waves or missing areas, so it doesn't look to be macular degeneration, thank Goodness.

Then, I started to read about all the eye tests... very interesting.

Then I read about all the various eye issues, and came upon one that MAY possibly fit for me...
Diabetic Retinopathy.
*************************

http://www.stlukesretina.com/html/diabetic_retinopathy.html


I KNOW that my insulin levels are way below normal, and there are many diabetics on my mother's side of the family. My LLMDs have all told me to watch my insulin levels due to symptoms that led them to have suspicions of hypoglycemia.


But, I don't really know how one tests for diabetes? Or Pre-diabetes?


They have also told me to look into following a low glycemic diet... but I don't even know what that is yet.

Anyway...just one more lead to ask about at my next appointment. Thank you!

charlie, thx for telling mel how to find the GRID!! and her learning much more than what she thought she would be.

mel, 1.5 yrs. ago, i was dx with DIABETES RETINOPATHY, and that scared the heck out of me since i was told it was the early stages of LOSING my eyesight.

i have yearly checkups; last fall, NO DIABETES RETINOPATHY APPEARED! eye specialist said this can COME AND GO; it must be monitored regularly.

but i felt so much better knowing my eyesight was safe for NOW!

do you have any diabetics living near you? ask them to use one of their test strips on you BEFORE you eat breakfast. IT SHOULD BE BELOW 120...normally around 100 but some drs. show up to 120.

then to test again 2 hrs. AFTER a meal...

sounds like you should have a A1C blood drawn, hemoglobin for 3 month check; anything BELOW 6.0 is NORMAL,

above, YOU ARE DIABETIC! and it will be with you the rest of your life... hope this helps you a little bit more ok my friend.


actually, tincup works for ice cream, but those cashews would taste mighty good with her ice cream!! [Smile] lol hugs..

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bettyg
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mel, did you clean out your mailbox, it was full when i tried to send you last night? [Smile]
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Kerryblue
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HI, thought jump in.
Lyme does effect vision some say need new glasses every yr. Goes from Good to bad, quickly.

Also Uveitis, I have found out very common due to CMV according to Books I was sent.
I got acute Lyme was horrible for 48 hrs. of torture mostly in ER/never should went but told to from office.
Mine was like knife someome was sticking in & pulling out. OUCHY
There is also chronic Uveitis which slowly effects your vision.

Other thing would get off plaquenil 1st. Most Dr.s warn you & tell you to stop if eye problems.

Have to do trial error so to speak.
Hope is nothing, I know my vision can taken away in heartbeat, due to Lyme & uveitis.
Hugggsss, Kerry

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Lymeorsomething
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Mel, I think it depends on the person too with some meds. Plaq seemed to adversely affect my eyes within the first few weeks of trying it so I quickly discontinued using it....

--------------------
"Whatever can go wrong will go wrong."

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Melanie Reber
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Hey Lymeor,
Yes, thank you...that is exactly what I read earlier. There are some at low risk and some at high risk depending on various contributing factors. I think we are all in the high risk category due to other issues and higher dosages of Plaquenil.

Hi Kerry,
It has been a longtime since I have seen you. Hope you are doing well? I'm so sorry to know what you have been through with your vision. That does sound extremely painful. Ouch, is right. Thanks for your input.

Miss B,
I really don't know of anyone who could let me use a test strip. But will bring this up with my doc. (If I get time) Sorry, I just don't have the energy to do PM housecleaning yet. But you know how to reach me if necessary. Thanks again.

Hmmmm... I thought everyone saw the beautiful colored halo around the moon...you guys are really missing out! [Smile]

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bettyg
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mel, take care; i wasn't sure if anyone told you your pm was full, and i used here to send most of what i wanted to.

yes, we talked privately; so i know that one is NOT full; better go see if the moon is out here or not. NOPE; outside here in iowa is pitch black! [Smile]

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canbravelyme
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Hi Mel,

PM eyebob; he is an optometrist.

xoxo

--------------------
For medical advice related to Lyme disease, please see an ILADS physician.

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EyeBob
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Mel,

PM me, I can help.

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Melanie Reber
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Hey there Bob,

I'm crashing hard right now and need to lay down, but would love your input. Would you mind emailing instead?

[email protected]

Thanks so much, M

Forgot to say thanks, Canbrave.

[ 05-17-2009, 05:40 PM: Message edited by: Melanie Reber ]

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Marnie
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Try OmegaBrite. 3 capsules at bedtime. It is one of the "omega's" but very very concentrated. It is an ester form of EPA.

Try it for a month.

We need different levels of these essential fatty acid "building blocks" at different times of our life (EPA/DHA).

You MUST get the level of TNF alpha and IL 1 B down somewhat. OmegaBrite does that...and more.

Ya know how the Omega EFAs are supposed to help our eyesight...eat salmon, etc.

Well...the one that looks to be very needed is EPA.

Google these words:

EPA eyesight.

Then figure out why E-EPA over DHA.

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Melanie Reber
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Hi Miss Marnie,

Thanks so much for the suggestions, I will have to do the research when I have more energy later on.

As much as I love salmon and know it is one of the 5 best foods for us, I simply can't afford it right now. I'll check into the rest.

M

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Melanie Reber
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I did find out this morning that the Omnaris nasal spray that I have been using for 3 weeks at twice the normal dose is steriodal!

I'm sure that can't help matters.

The small print enclosure speaks to reported 'rare instances of increased intraocular pressure'.

So, there is another one to ask the doc about.

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Robin123
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Hi - if it's the meds, I guess you'll find out soon enough.

Have you ever tried mangosteen juice? Maybe it could help, even if the meds are bothering, since it's anti-inflammatory.

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Marnie
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Melanie, my sis zoomed to stage 3 lyme initially because she was misdx'd (RA) and given steroids.

You can well imagine her fear of steroid shots IN HER EYES (x2) to stop her uveitis.

At one point in time, all she could see was the big E on the eye chart.

I am being totally honest.

The steroid shots IN HER EYES WORKED. It stopped the destruction which was being caused by far too much "oxidative stress" and way too many "inflammatory cytokines".

The steroid shots IN HER EYES SAVED HER EYESIGHT.

She is "autoimmune" now, and the joint destruction DOES continue (Humira = lower only TNF alpha to a degree and Fosamax = fight osteoporsis didn't CURE, but they HELPED).

But...her eyes have continued to get better and better and better.

She once needed glasses and her prescription has since been changed (does not need as much correction).

She is off all abx. for several months now and is only taking Prozac - highest doses allowed. She eats very healthy.

Prozac, for complicated reasons, maybe why she does not have the "neuro" symptoms, but "only" the destructive arthritis from lyme.

OR it maybe the STRAIN of Bb that she ran into.

Getting H2O into the RIGHT cells is...well...

helpful...to a degree!

Look at the impact of water on phospholipids.

Don't freak about your nasal spray!!!

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Melanie Reber
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Hey there Robin,
I completely forgot to wish you a Happy Birthday! Please forgive me, I've had way too much on my plate recently.

BTW...I was able to download the script and video of our talks. Thanks for the link. To answer your question, no I have not tried the juice. I know you have touted its great effects for you for a long while now, and I'm so happy it has helped you.

Miss M,
That is an amazing story about your sister, and of course you are being honest, I would never doubt you!

I think any sort of shot in my eyes would cause great fear! But I am thrilled that this worked for her. No, I will try not to freak re: the nasal spray.

I know that steroids ARE necessary at times. It is just that I was unaware that Omnaris WAS a steroid... so, of course I was a bit surprised.

I'm trying to understand the roles TNF alpha and IL 1 B play. I am sort of getting the TNF alpha thing but still need to try and find more info on the other. Please remember, I do NOT have a medical or science background... so all this research is very slow going and very tiring for me.

So while I SO appreciate the direction you are providing... I'm a novice when it comes to this stuff and it takes me awhile to 'get' it, if ever.

Having said that...please do continue, because your input is very valued. Thanks.

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bettyg
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marnie, what an uplifting story about your sister's eyes. i continue to learn here daily. [Smile] hugs
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Kerryblue
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Hi, Melanie I have been on this site on-off for few weeks.
I do surveys on net for some food money, sometimes I get points,checks or win the daily give away. All I can do & hate puters as it is.

Have had so much on my plate well person can`t handle....UGH
Finally got picc line after 20 yrs for over under 2mo. Due to many errors.
Now think just stirred hings up & worse since no follow up meds for Lyme....I fought hard for this.

Pushed Drs. to their limits knowing my Lyme was so much worse going towards ALS.
Just wanted to least stop this progression???

Been very tuff alone as many other Lymies are. Fighting battle alone, No 1 close except few fellow Lymies, too sick to help even themselves, but have husbands or wives that have helped.

Keep check on those eyes, if CMV is active it can easily toy with eyes. May be acute as mine or chronic type which sneaks up & need eye meds to help so see better. After the E>R> fiasco & ll damage they did Eye Dr. knew right away. Besides having to treat all the mess up with E.R.
9 eye drops up every hr. had to take.
Yeash, always something with us.
My ID Dr. did mention we have least 100 symptoms think I have 99 of them.
How about you??
Have been to Opthamologist that knows about CMV??

Please take care, surprised you remembered me
Thank You, That was Nice...
Huggggsssss, to all in need....Kerry

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Melanie Reber
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THANK you Eye Bob!!!

Hey Miss Kerry,
Of course I remember you! [Smile] I have just been a bit too busy to read much on LymeNet recently, so I guess I missed your other posts.

My heart goes out to you for all you have and continue to deal with trying to get the help you so desperately need and deserve. Somethings just are so unfair! I am so sorry.

Yes, I understand well how difficult it is to go it alone. I thank Goodness for the wonderful long-distance support system that envelopes me, or I would have given up long ago.

If by CMV, you are referring to Cytomegalovirus... I am not sure that I have this.

Although I do have other viral issues happening, including Herpes simplex virus (HSV-1) manifesting as cold sores and eczema, Herpes simplex virus Type 2 (HSV-2) which manifested as pre-cancerous cervical carcinoma... taken care of with cryrotherapy many many years ago and Varicella Zoster Virus (VZV) which manifested as chicken pox and then Shingles.

Here is a great site that explains the various viruses: http://pathmicro.med.sc.edu/virol/herpes.htm

I am currently trying to apply for a County Medical program that will allow me to seek help in various areas which are now unaffordable to me. Hopefully, I will qualify and be able to see an eye doc soon. [Smile]

You hang in there Kerry!!!
M

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bettyg
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mel,

the various viruses explanation site was wonderful; i have many of these too and had not been able to find out more what they were, etc. you solved that problem for me....big thanks [Smile] xox

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Melanie Reber
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You are most welcome. Goodness... it seems that each day brings a new awareness of how much we still don't know.

I'm just so grateful for this site and the people here SO willing to share their combined wisdom.

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Melanie Reber
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bump- good information on vision issues.
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daisys
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Melanie,
After all this time, how is your vision now? Good to see you are hanging in there.

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Melanie Reber
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Hi daisys! (one of my favorite flowers) Well, as it turns out, the reason I keep dredging all these old posts back up is because I seem to be dealing with many of the same old issues.

Yes, poor vision is one of them currently. It is very difficult to really focus on much of anything and in pushing myself, I am certain to get a headache after a few hours. Interestingly, it just keeps changing from not so bad, to nope- no working today, to what the F#[email protected]!

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Robin123
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Well, hi there - this is an old thread, but still a current problem, looks like.

Want to reiterate that drinking mangosteen juice saves my eyesight. I too went thru the blurred vision you'r describing above. I passed all the eye testing even tho the doctor had to anesthetize my eyes for me to be able to be able to look at light.

The juice has 43 xanthones in it - they're compounds that scarf up the free radicals created by inflammation. All eye problems - light sensitivity, blurred vision, floaters and eye muscle pain were gone in 24 hours after starting the juice! I drank alot the first time, but now I drink around an ounce a day.

I get the Mango-Xan brand from the healthfood store - there are a couple mangosteen juices available.

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Melanie Reber
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Hey there old friend! Thanks for the juice reminder!
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