LymeNet Flash: Have a question concerning eye problems

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Posted by brneyedgrl (Member # 6933) on :

I get this condition that the opthamologist calls a orbital pseudotumor.

It is swelling in the orbit of the eye for unknown reasons.

Could this be related to lyme disease?

I was given 80mg of prednisone for 3mths and what a nightmare that was. It caused:

white count sky high

paralysis from neck down

swelling all over body

jerks

my skin went blood red

pychosis

knee pain

wolf-parkinson-white on ekg

I thought I was going to die.

Now when this ocurs they want to inject the steroid into my eye.

I tried to tell them I thought I ahd some kind of underlying infection that the steroids made it worse.

They told me I was just stressed.

I guess what I am asking is are steroids shots safe to take since alot of people with lyme have problems with them?

I know this will reoccur since is does every year. This is the worse pain I ever get. Feels like stabbing pains in my eye and just one side of my eye swells.

Has anyone ever had a problem like this??

Thanks, Brneyedgrl

Posted by brainless (Member # 6771) on :

DO NOT TAKE STEROIDS!!!!!!!!!!!!!!!!!!!!!!!

Do you have yeast? My Morgellons first showed with swelling around the eyes.

[email protected]

Posted by treepatrol (Member # 4117) on :

YES its totally possible its from lyme. Lyme is a oppertunist it attacks everything depending only on where it lands and whats the weakest at that time. prednisone any steroid bad news if lyme infected there immune suppressors.

Posted by duramater (Member # 6480) on :

First, 80 mg/day is an elephant-sized dose. Several of the effects you listed are "typical" prednisone side effects particularly at that high a dose (i.e., psychosis, pain). [An absolute mystery is that your white count was HIGH, usually it drops.]

Second, while SYSTEMIC steroids are contraindicated with infections, localized applications are another matter, particularly when treating a life or organ-threatening condition.

For example, I take inhaled steroids twice a day for severe asthma. Most stays in my lungs and very little ends up in the rest of my system, thus, little impact on infection, terrific control of asthma.

So, I would as two questions: (A) Is there any possible permanent damage to my eye if this goes untreated? (establishes the seriousness and need for the injected steroids) and (B) If injected intraoccularly, how much steroid is likely to end up in the rest of my system?

If the answer to (A) is anything other than none (don't mess with your eyes!!!) and (B) is "not too much," I would absolutely get it done. If it is not a matter of vision loss or other eye damage, but rather pain control, I might explore other options.

Other folks here are categorically against steroids, but I think that is a bad choice. Non-systemic steroids are useful in organ and life-threatening diseases when there are no other treatments. Moreover, non-system steroids have relatively little impact on diffuse infections. In contrast, systemic steroids do strongly impact such infections, and are thus generally avoided unless the disease is absolutely life-threatening and there is no other treatment choice.

~DM

Posted by Curley911 (Member # 2205) on :

Here is a great little piece about lyme and eye disease. Note that the spinal tap was negative . . . Another lymie on this board has gone blind three times due to lyme. You've described lyme perfectly w/your symptom list. Stay on your path, you're doing great.

BTW, now that I think of it ANOTEHR lymie friend was diagnosed w/Retinis Pigmentosa early on and 30 years later lyme. Now she is mostly in remission and enjoying a wondeful life.

Secondary retinitis pigmentosa and cerebral demyelination in Lyme borreliosis.

Karma A, Pirttila TA, Viljanen MK, Lahde YE, Raitta CM.

Helsinki University, Department of Ophthalmology, Finland.

A 15-year-old girl developed retinitis pigmentosa-like fundus changes in the left eye and optic neuropathy in the right eye as well as cerebral demyelination as a result of late Lyme borreliosis (LB). The diagnosis was confirmed by polymerase chain reaction, which detected a Borrelia burgdorferi specific segment of a gene coding for 41 kD endoflagellin, both in the vitreous and the cerebrospinal fluid. The diagnosis was delayed because testing for Borrelia antibodies in serum and cerebrospinal fluid yielded negative results. However, later on, another laboratory reported the antibodies of the patient's pretreatment serum to be positive for LB.

Publication Types:
Case Reports

PMID: 8435413 [PubMed - indexed for MEDLINE]

Posted by aklnwlf (Member # 5960) on :

Hi there Brneyes,

After severe headaches my right eye developed sixth nerve palsy which the docs at Emory and Mayo thought might be related to a pseudotumor or other ailment. I was treated with 60 mg. a day of Prednisone for a couple of months then taken off when it was determined that my vision was improving. Also all my tests came back negative for the things they were searching for.

I didn't realize at the time that I had Lyme disease and really regret taking the steriods.

While on steriods my Neurolyme became much worse. I had trouble breathing, swallowing and just all kinds of problems but these were the scariest.

Are you seeing an LLMD?? If so, I'd ask their opinion. I know lots of us Lymies have vision problems.

Also during that time I had minor swelling and nervous tics in that eye and redness around my eyebrow.

With oral antibiotic treatment my vision has improved but lately its gotten a little worse because my LLMD had to lower my orals due to problems.

I really hope this helps Brneyes. I know it can be scary when they say pseudotumor but if I remember correctly, the doc at Emory stressed the 'pseudo' part and helped me to relax. She was terrific! Should have stayed there instead of heading to the Mayo.

Anyways, best of luck to you with the pseudotumor treatment and let us know how you're doing.

Posted by brneyedgrl (Member # 6933) on :

Thanks everyone for replyng.

I am not being treated for this right now but I know I will again in the near future.

I was also checked for all the other conditions that out rule orbital pseudotumor which came back negative.

No I am not seeing a LLMD right now. Do you need a Dr referral to see one?

I have so many allergic reactions to meds that there is only a few that I can take. Doesn't lyme increase allergic reactions? Maybe this is the reason I have reactions.

Yes, 80mg of pred is enough for a elephant.

I am tired of not getting any help from the medical field because they tell me this is all in my head.

I don't think I am imagining these symptoms when my eye swells up for no reason, have what feels like spasm's or tic's maybe in my eye.

They told me orbital pseudotumor never returns but mine returns I would think something causes that.

I have had a spinal test done which showed negative. Would lyme show up in a spinal test?

Sorry about all these questions.

Thanks.

Brneyedgrl

Posted by Curley911 (Member # 2205) on :

Spinal fluid tests are approx. 20% accurate so your results are inconclusive unless you get a positive. The only good thing about missing itis maybe they lyme has not invaded that area.

As for a LLMD, you must be your own advocate and we can help you find one. What area do you live in??? You'll notice Dr's names are not posted here . . . they have been so harrassed that we protect them.

Lyme Disease can attack any an all organs in the body. It can go in the eye and then move to the heart. Heart Murmurs are typical. Email me and I'll see what I can do to help you find a LLMD. The biggest problem is getting insurance coverage. Then you might have to have a referral.

You are not asking too many questions; you are sick, you need help and this is how you get is. There are alot of new people on lymenet so I suggest posting a reply to yourself just saying UP!. This will bring your question to the front page which is important if you post it when everyone is sleeping. Well, MOST are sleeping :-).

Take care
Curley

Posted by brneyedgrl (Member # 6933) on :

Curly911

Thank you for replying. I live in Missouri.

I have no idea how to email you. Is your email address on here?

I am fairly new at this and not very well computer literate.

Most Dr's in Missouri is 4 to 5 hours away from me.

I go to an urologist in St.Louis in March.
I have a bad case of tonsilitis right with a mouth ulcer and had to cancel my appointment with him yesterday. I am being refferred to him by my PC for IC.

I was going to ask this urologist about lyme since alot of people with lyme has IC.

I am afraid to ask my Dr. to test me for lyme in fear I would be laughed at.

Thanks for listening,

Brneyedgrl

Posted by dzeb (Member # 4426) on :

It is very possible your symptoms are from Lyme. All of my sx are eye related. I was only able to count fingers at 2 ft in my left eye for several months and was treated with 80mg of Prednisone and also had theinjection in my left eye before knowing the diagnosis of Lyme, needless to say Lyme hates steroids. I have neuro-lyme and all my problems are eye related. I had evrything from periphlebitis, optic neuritis, optic neuropathy, uveitis, vasculitis, etc. I also have my left eye that drfits outward but only myself or an opthomologist can see it. I also have an APD in the left eye fro Lyme, almost was blinded by this disease.
I would see help from a LLMD if you truly suspect Lyme and let them treat you accordingly.
Best of Luck
Dee

Posted by duke77 (Member # 5051) on :

My Left eye has really bothered me for a long time. I haven't been able to
wear contacts in 8 months. There is pain like pressure from behind, sometimes
its like someone is sticking a needle in the back of my eye ball. Lots and
lots of floaters, very blood shot in both corners of the left eye. I have been
to the eye doctor 3 times in the last 6 months. I have had about every test
they have run on me one day I was there 2.5 hours one day with test after test. The
doctor said he couldn't find anything wrong with my eyes and they are healthy.
He said they are dry and irritated and to use eye drops. How could the eye be
healthy with the problems I am having?

Posted by Sydneyanne on :

Hi there: I have this problem you talk about my eye swells every since I have had the symptoms of Lyme I was diagnosed only 3 months ago after being sick for 2 years. It is the weirdest symptoms I have and have heard of others with it, if they have Lyme. My eye will twitch sometimes too and open and close a little at times.Dr says it is a form of migraine/ bells palsy assocotiated with Lyme disease. Take Care Sydneyanne

quote:
Originally posted by brneyedgrl:
I get this condition that the opthamologist calls a orbital pseudotumor.
It is swelling in the orbit of the eye for unknown reasons.
Could this be related to lyme disease?
I was given 80mg of prednisone for 3mths and what a nightmare that was. It caused:
white count sky high
paralysis from neck down
swelling all over body
jerks
my skin went blood red
pychosis
knee pain
wolf-parkinson-white on ekg
I thought I was going to die.
Now when this ocurs they want to inject the steroid into my eye.
I tried to tell them I thought I ahd some kind of underlying infection that the steroids made it worse.
They told me I was just stressed.
I guess what I am asking is are steroids shots safe to take since alot of people with lyme have problems with them?
I know this will reoccur since is does every year. This is the worse pain I ever get. Feels like stabbing pains in my eye and just one side of my eye swells.
Has anyone ever had a problem like this??
Thanks, Brneyedgrl