posted
I HAVE COMPLETELY LOSS MY COLOR CONTRAST WITH EYES IF i DONT HAVE GLASSES OM OR CONTACTS IN , EVERYTHING IS GOING BLACK. tHREE SSEIZURES TODAY. sKIN HAS BEEN NUMB FOR EIGHT MONTHS AND NOW GETTING NERVE PAIN AND BURNING IN TRACKS. l:AST 3 DAYS SLEEPING 12 HOURS AND NO APPETITE. MY GP HAS ORDERED EEG AND MORE MRIS. i AM AT A LOST TO KNOW WHAT TO DO. WE GO TO A THIRD LLMD FOR OPINION AND HELP IN TWO WEEKS. THIS LYME HAS BEEN SO AGGRESSIVE, FOURTEEN MONTHS. VERY FRIGHTENED AND TIRED OF THE SEVERE PAIN, NUMBNESS AND VISION LOSS. i SEEM LIKE i AM TRAPPED IN A DEAD BODY. iT DOES GET BETTER, DOESN'T IT?
Posts: 719 | From Delaware | Registered: Jan 2006
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Then found another disease called Devics Disease which is a combination of Optic Neuritis and Myelitis (inflammation of the spinal cord)-- it includes spasms (seizures?) as a symptom.
I really think you should go see an opthomologist (eye doctor) ASAP -- my brother had a TIA once and he had swelling of the optic nerve which was the only thing that ever showed up on any test. A neuro-opthalmologist would be best.
Your eyesight is too important to wait 2 weeks to see an LLMD -- MRI probably will not show anything either.
This is just my opinion and not medical advice.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
So sorry, Iceskater. I hear you. I hope your docs are having some suggestions for something aggressive? What kind of IV have you done, if any?
There IS sometimes (go ahead, smite me down now) justification for limited use of steroids. I would think preservation of sight might be one of 'em.
Diamox is a med to reduce intercranial swelling, which might be contributing to vision loss. Has it been tried? My LLMD says it helps about 50% of his patients, though it didn't help me.
Wish I had more to offer. I second Bea's suggestion to get to an eye specialist ASAP. Lyme may come and go, but eyesight may go and not return!
Sending a warm hug your way.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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posted
I am at a loss for suggestions here, since this is so out of my realm of knowledge.
I just wanted to let you know I am thinking of you, and hope somebody can give you good suggestions that will lead you in a positive direction.
My week has been hectic and I have been out of touch, since I have been at the doctors this week. Starting to recover enough that I am catching up on messages. Please let me know if there is anything I can do to help.
Hang in there, though it sounds really tougher than tough for you right now.
Posts: 114 | From USA | Registered: Sep 2005
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bettyg
Unregistered
posted
Sandi, my friend, this just breaks my heart.
I know you spent 2 whole days with EYE SPECIALISTS LAST MONTH, and they couldn't come up with anything what is robbing you of your eyesight so fast!
Check this web site out:
FOUNDATION FIGHTING BLINDNESS driving research to save & restore eyesight
www.fightblindness.org
Their address is:
11435 Cronhill Dr. Owings Mills, MD 21117-2220
I started subscribing to their quarterly newsletter with Dad's macular degeneration. This is the only thing I can think of to refer you to.
Sandi, you are in my thoughts and prayers sweetie! You don't deserve this on top of your lyme and everything else. May God provide you a miracle now bringing back your eyesight he has taken away to date! I believe & I know you do.
posted
I don't have any suggestions, just want you to know I'm sending healing thoughts your way.
I am getting better. Are you happy with your LLMD? There is a famous eye specialist in Boston who treats Lyme. I'll PM his name to you. Your Drs. may want to consult with him. hatsnscarfs
Posts: 956 | From MA | Registered: Nov 2004
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
Just wanted to say I am sorry you are going through so much.
I can't imagine the amount of fear you must be experincing. Frequent seizurez and eye issues... would scare me too.
I have always admired that even though you have been through so much you always have such a great attitude.
You are so strong. May you be granted the strength to deal with your newest symptoms.
-------------------- Stella Marie Posts: 694 | From US | Registered: Apr 2005
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NP40
Frequent Contributor (1K+ posts)
Member # 6711
posted
My son had a lot of eye sensitivity, horrific total body pain, migraines, etc. He'd have to wear sunglasses on cloudy days, keep the shades pulled, things would seem far away, hallucinations, you name it.
A year of abx and to look at him today you'd swear he was never sick a day in his life. Hang in there, it will get better. The abx takes a while to cross the blood brain barrier where the keets seemed to have settled in your case.
The key for you is to receive continuous, adequate treatment and you'll be fine.
Posts: 1632 | From Northern Wisconsin | Registered: Jan 2005
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Carol B
Unregistered
posted
I want so desperately to respond to your post with a message of hope-but I am so new to all of this I don't know what to say.
I wish I had walked this way before you so I could show you the way-instead all I can do is walk beside you as a "sighted guide".
Hold on to my elbow, I work(worked) with blind children-their acceptnce and resilience is inspirational.
Talk with you later, Love and Hugs, Carol
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
hI iceskater
post when you feel up to it and let us know how you are doing. I am worried about you.
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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posted
Iceskater, Honey, I'm so sorry for what you're going through! I've been there.
I'm getting you the ph,# for my LLMD Ophthamologist in Lancaster--I'll e-mail. My whole family has Lyme & we ALL go to Dr.Eric...he knows his Lyme, thankgoodness. They've really helped my 82-year-old Grandpa with his Lyme-induced Macular Degeneration!
I got their name from Carol ages ago...Carol, if you're out there, do you have Doc Eric's #?
Talk 2 U Soon~~Hugs,Reno
-------------------- ~Life's too short, eat dessert first Posts: 134 | From PA | Registered: May 2005
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posted
Hi Ice Skater, I want to give you a hug, only e-hugs I guess today
You are not alone. We are all sending love and support your way. I know of no disease worse than ours and tha fact that you show up and fight everyday is true courage...
Hang on soldier, keep your spirit alive.
-------------------- We are spiritual beings on a human journey...
posted
hi Guys: I am hanging in today. Do go to Dr S neuropth: we have treid a few of his ideals but no relief yet. Still searching for the magic bullet. Thanks for all of your posts. I know it smacked my neuro system fierely. Bea your website post very helpful { the devin disease decribes exactly what the visual field looke like- will print and send to my gp to mull over so we can consult Dr O . Thanks for all of your help guys.
Posts: 719 | From Delaware | Registered: Jan 2006
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bettyg
Unregistered
posted
Sandi, I'm so glad you posted an update on yourself, and glad you found Bea's comments helpful! Thinking & praying hard for you, my oneline friend. Take it easy.
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posted
new EEEG, MRI are scheduled to see what is going on for end of week. eyesight continues to tank out, I am hanging in. Thanks for your support
Posts: 719 | From Delaware | Registered: Jan 2006
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posted
new EEEG, MRI are scheduled to see what is going on for end of week. eyesight continues to tank out, I am hanging in. Thanks for your support
Posts: 719 | From Delaware | Registered: Jan 2006
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suki444
Unregistered
posted
Hi What you are going through sounds awful, I'm sorry this is happening to you.
I don't know your history but have you been treated for Bartonella (known to cause seizures and cause CNS involvement) or Babesia?
Both of these co-infections worsen symptoms..I lost the sight in my left eye for a while too - it was optic neuritis but this usually occurs in just one eye and resolves on it's own. Mine healed 100% eventually.
For a while I had no colour contrast then colours were affected then it went back to normal.
Your symptoms sound a lot like mine in the past - in 2003 I got optic neuritis, l'hermittes (spinal inflammation). A lumbar puncture showed chronic meningitis and I had no appetite - complete nausea/sore gut and dropped 2 stone in weight. Treating Babesia was the key for me.
Things that heal nerve damage like vitamin e, fish oil, methyl B12 injections also help I think. Also treating neurotoxins with questran whilst not on Mepron helped me too.
I hope your doc can get to the root of what is causing this, keep us posted on your progress.
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