Wanted to introduce myself and ask a couple of questions. I got Lyme disease this past June - had rash, positive blood test, followed within a few days by Bell's Palsy.
I got on medication very quickly (was on oral doxy. within two or three days of rash appearance) - but I still got sooo sick - I also had extreme fatigue and brain fog, multiple rashes etc. in addition to the Bell's -it seems unusual to me to be so ill when I got treatment quickly and I wondered if others have also had that experience.I keep reading if you get treated right away its not a problem - not so!
At this point, the main problem I have is related to my eye -(and surprisingly not the one that was affected by Bell's Palsy, which has since resolved) Most of my other symptoms seem to be getting better a little at a time, but I have an eye problem I can't seem to beat (eye turns red, inflamed, pressure high) Am being treated by a lyme literate opthalmologist (using a combo of antibiotics in eye, and some other things.) Has any one else had this particular eye problem?
I also wanted to thank anyone who sent me info on finding a physician - I was so sick (and mentally foggy) at the time I never responded directly.
Thanks, Elliep.
Posts: 34 | From Saratoga Springs, NY | Registered: Jun 2008
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bettyg
Unregistered
posted
ELLIE, you're welcome! sorry you have been so sick.
lyme does affect the eyes terribly; all of us are different.
i suggest copying your post and the link and send it to our member ....
EYEBOB here who is an eye dr. go to top an click on DIRECTORY go to 1st blank line on left side and type his name there and then click search
you will get his profile; on right side, you can send him a private message.
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I do not have an info on eyes either, I am sorry. I just wanted to send you a warm welcome Posts: 171 | From the land of oz | Registered: Feb 2009
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Eye symptoms are very common with lyme an can also be attributed to co-infections such as Bartonella. I have been struggling to treat chronic Uvietis and still have not managed to resolve despite several abx combos.
I have switched to IV ricephin since a month ago in an attempt to treat this symptom.
I have never had high pressure but I do suffer from other symptoms you speak of. My Opthamologist seems to be content to allow this inflammation to continue at a low level and he does not know what causes it. Of course he is sure it is not related to lyme (haha) The old ABL diagnosis (anything but lyme)
My LLMD is in upstate New York and I would really appreciate if you could forward your lyme Opthamologists details and maybe a bit about treatment what he/she is using with you.
Hope you find relief soon.
Neil
-------------------- Pos BB and Bart(Q & H IGG pos) Began treat 1 year after start of illness. Diagnosed Feb 2007. Posts: 648 | From Ireland | Registered: Jan 2007
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
If abx. (topical eye, I assume) aren't working, consider a virus.
Many viruses can reactivate...EBV, HHV6, etc.
The combined therapy for viral eye problems is to tame down the inflammation AND give an antiviral. DUAL therapy.
The ongoing inflammation can be very dangerous to the health of the eye nerves -> permanent damage.
If you have been on steroid eye drops they might be masking a viral infection.
You also might want to consider the thyroid-glaucoma (high pressure) connection and get your thyroid levels checked:
My sister developed uveitis as a result of lyme. She had to resort to steroid shots directly into her eyes twice to stop the damage. It sounds worse than it is, she said. It DID stop the damage and restore her sight. At one point all she could see was the big "E" on the eyechart and she was understandably scared to death.
Since oral steroids got her into a mess at the outset of lyme (she was misdiagnosed with RA and was given oral steroids), she was very very reluctant to allow the injections.
In this case it was the only way to prevent her from going blind.
And it worked.
We have estrogen receptors in our eyes too. It might be good while you are at it to check that hormone level too (in addition to thyroid hormones).
Posts: 9424 | From Sunshine State | Registered: Mar 2001
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Starfall1969
Frequent Contributor (1K+ posts)
Member # 17353
posted
Welcome Elliep.
Like others, I'm sorry you had to find this site, but glad you did.
I don't really have any answers for you either, and I don't have the same eye issues as you do.
My issues are more seeing floaters all over the place, my right pupil dilating abnormally, and occasional eye pain.
You may want to research mangosteen juice, as I have seen numerous references to it with regard to eye issues.
Go up to the top, click on the search button and enter mangosteen juice into the search box and check out other posts about it.
Good luck,and I hope you find what you need!
Posts: 1682 | From Dillsburg, PA | Registered: Sep 2008
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posted
Yeah check out the Shmangosteen thread its a real doozy!!
-------------------- Pos BB and Bart(Q & H IGG pos) Began treat 1 year after start of illness. Diagnosed Feb 2007. Posts: 648 | From Ireland | Registered: Jan 2007
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posted
So Marnie you are saying the steroid shots resolved the Uveitis permanently for you sister? How long was it inflammed for?
My opthamologist won't do anything unless he feels its out of control. Maybe I might look into getting a LL Opthamologist to take a look.
Maybe a shot is an option as nothing seems to touch it and I am fed up.
Sorry Ellie not hijacking your thread.
-------------------- Pos BB and Bart(Q & H IGG pos) Began treat 1 year after start of illness. Diagnosed Feb 2007. Posts: 648 | From Ireland | Registered: Jan 2007
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posted
Hi - thanks all of you for your support and information. I've been hearing good things about Mangosteen juice and just got a bottle - any experiences with it are appreciated - (I haven't followed the Mangosteen previous posts yet.)
Elliep also - NMN - tried to post you to give you some info re:my ophthalmologist and meds but your mailbox was full - will try again later. Doctors with more Lyme experience seem to feel the eye problem won't go away without treating underlying infection in eye (with local antibiotics and treating inflammation with topical steroids)- I think the assumption is that the lyme is still active in the eye. Other ophthal. seem comfortable with treating the inflammation only - (my reg. opthal. who I really like, but who has no Lyme experience, was taking that approach too. I think he felt the inflammation would ultimately go away on its own as long as he could control it. I'm not better yet so I don't know if either approach works!)
Posts: 34 | From Saratoga Springs, NY | Registered: Jun 2008
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posted
Hi Ellie - yes to the mangosteen juice experiment. What brand did you get? If you try it, go slowly and drink a lot of water, as it can be powerful.
I had immediate eye relief results with it. My eye symptoms were different than the ones you describe. So just see what happens and report back.
Also the mangosteen thread is a good one.
lol NMN on schmangosteen - eyes, schmeyes, it's good for what ails ya...
I've decided who takes schmangosteen: it's for anyone who whispers...
Posts: 13116 | From San Francisco | Registered: May 2006
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
There are so many things that can cause eye inflammation. It is important to get your internal eye pressure checked. I had severe inflammation actually caused by systemic TB. But it could be many other bacteria or virus.
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
Yes, Ellie...steroid shots x2 directly in her eyes halted her very serious vision problems which WAS INDEED leading to blindness.
She had done everything traditionally Rx's for the initial "dry eyes"...it got worse and worse...over many months.
She saw a uveitis specialist in the midwest. If you need a name..PM me. He is brilliant.
It did NOT stop her systemic lyme and she has very serious degenerative lyme arthritis and has been dx'd "autoimmune" now.
But the shots in her eyes DID stop her degenerative vision problems.
It is critical we save our eyesight.
Many lyme patients develop hypothyroid problems and that might add to the problem. Hypothyroid + too many inflammatory cytokines is very disasterous...eye wise.
Sorry if I do not appear as caring as others on this board. I am a retired nurse and a Sagittarian...I tell it like it is and I shield myself (to a degree) so that I can help.
In an emergency, medical persons have to think about what to do immediately and don't often take the time to be "consoling".
We DO care. I DO care!
Welcome to this board.
Good luck and God Bless.
Posts: 9424 | From Sunshine State | Registered: Mar 2001
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ahh Marnie....your just a wee softy at heart arent ye? Bless.
Bejoy my pressure has always been normal.
-------------------- Pos BB and Bart(Q & H IGG pos) Began treat 1 year after start of illness. Diagnosed Feb 2007. Posts: 648 | From Ireland | Registered: Jan 2007
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
The eye specialist told me I had an autoimmune inflammation of the sclera. He gave me sulpha and prednisone drops which did not work.
As I said, for me it turned out to be systemic TB (a fairly dangerous infection, don't you know, but hard to diagnose, since it wasn't in the lungs.) I probably got it touching all the equipment in the gym, then rubbing my eyes, on a day when my immune system had taken a hit.
Ellie, NMN, if the internal pressure is fine, I am relieved for you. If it is truly an autoimmune disorder, by all means, the steroids to preserve your vision!
Are you already on broad spectrum systemic antibiotics, that would treat a systemic infection,if that is the cause?
Have you Googled pictures of inflamed eyes to see what certain things look like? If it is a virus, even like HSV, I wonder if any antivirals would work.
I mainly use homeopathics, myself, although I support whatever works for the individual. For me Sanum Pleo Muc 5x worked very well, and I am now on a TB series treatment.
Best wishes for your treatment and recovery.
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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2roads
Frequent Contributor (1K+ posts)
Member # 4409
posted
Marnie,
The dry eyes were due to which TBD?
Can you pm me the name of the Midwest eye doctor-
Thanks,
As always,
2roads
Posts: 2214 | From West Chester, PA | Registered: Aug 2003
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Marnie
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Member # 773
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