posted
For about 3 months I had SEVERE eye problems: mainly focusing. It was horrendous. Also had blurry vision and would have to fight by brain to get my eyes to refocus themselves. (Half of the day my eyes were dazed off). I even had yellow pupils in pictures. I was sure I had severe damage but when I saw an eye doctor all he said was I had slight muscle damage but besides that my eyes were 100% healthy. I still have some trouble with focusing but it is much much better.
Posts: 370 | From NJ | Registered: Dec 2007
| IP: Logged |
posted
This is my email response to one of your members:
Thank you for your heartfelt response and information. I am so sorry about you, your son, and others suffering from tick-borne diseases. Juvenile Idiopathic Arthritis, also known as Juvenile Rheumatoid Arthritis, is a diagnosis of exclusion. This means that other diseases are ruled out before the diagnosis is made. Yes, it was possible Gabrielle's initial arthritis was caused by Lyme Disease or something else. Over time and a battery of tests, it and everything else was ruled out. As for the uveitis, there are 85 known causes of uveitis. Lyme disease and JRA are just two of the root causes.
Thank you again for your passion and information. I will continue to read the links you provided and update our website as appropriate. Right now we are way behind in basic plans and funding to help more children with JIA-related uveitis.
Sincerely, Steve Gabrys Parent and Founder Gabrielle's Vision, Inc.
Posts: 1 | From Atlanta, GA | Registered: Jun 2008
| IP: Logged |
posted
The eye problem was scairy when I first got lyme. I used colloidal silver in the eyes about 3 times a day. I still use it once in a while. What cleared up the swelling and the constant itching and leaking was a product Eldeberry Defence by Nature Sunshine, which I was taking so I didn't get a nasty flu.
This is not medical advice, just sharing what worked for me.
Gail
-------------------- Gail Posts: 234 | From Sterling, Ma | Registered: Jan 2008
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Dear Mr. Gabrys - thanks for your note reminding us that lyme is not the root of everything - and the reminder that it should always be considered as a matter of exclusion.
The thing is that, often, it's not so easy to rule out.
We'd all like to see better testing evolve and many here have been harmed by the use of steroids before it was discovered that lyme was the underlying cause. We hope that no one else has to have the kind of harm that we've experienced.
Still, in some cases, it may be difficult to know if lyme is the root of various symptoms.
The excerpt below shines some light on this matter and what can help prevent lyme from blossoming if steroids are required in an emergency for a patient who does - or could - have lyme or other tick-borne disease.
There is no certain test that can rule out lyme or many TBD. The matter relies heavily on seasoned diagnosticians who are well versed in ILADS research - and preventative measures if lyme is suspected.
There are over 300 strains of borrelia. In the U.S., only one is tested and some important diagnostic bands are no longer used in Western Blot testing at many labs.
There may be updates to the note below since 2005 - and certainly patients can ask their own doctors what to do should they encounter a life (or eye) threatening emergency.
In some emergencies, steroids can save lives - and eyesight. If required, it's great to know how to do that safely, considering lyme or other hidden infections such as Cpn, HHV-6, etc.
And, going back, lyme and other stealth infections can be the underlying cause of many conditions. We have to step up to the plate and do better with diagnostics and treatment.
"More evidence has accumulated indicating the severe detrimental effects of the concurrent use of immunosuppressants including steroids in the patient with active B. burgdorferi infection.
Never give steroids or any other immunosuppressant to any patient who may even remotely be suffering from Lyme, or serious, permanent damage may result, especially if given for anything greater than a short course.
If immunosuppressive therapy is absolutely necessary, then potent antibiotic treatment should begin potent antibiotic treatment should begin at least 48 hours prior to the immunosuppressants.
--
ILADS - International Lyme and Associated Diseases Society
May 2008 Volume 39 Number 5 LABMEDICINE www.labmedicine.com - American Society for Clinical Pathology
Chronic Bacterial and Viral Infections in Neurodegenerative and Neurobehavioral Diseases - by Garth Nicolson, Ph.D.
-
[ 27. June 2008, 03:28 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Alv
Unregistered
posted
Wow .I just finished the article .That is horrible.Kids have swollen Knee , are in wheelchair and white blood cells in the eye.They are getting steroid shoots or drops for very long and are running high fevers.
"He learned about the silent threat of uveitis, so every four months a pediatric ophthalmologist checked Gabrielle's eyes for white blood cells - signs of inflammation that indicate the onset of uveitis. For more than a year, her eyes were clear. Then came Aug. 1, 2005.
That sunny summer day in August - which Steve quickly recalls was a Monday - his phone rang when he was out of town on business. On the other end, Daphne was crying, Steve says, ``really, really upset.'' During a routine exam, the ophthalmologist had found white blood cells and diagnosed chronic anterior uveitis. ``It's really bad,'' Daphne said. ``Gabrielle may go blind.'' Steve immediately collapsed in a chair, devastated. Although stunned, he called on his engineer's logic. ``The books say that it's treatable,'' Steve said to Daphne. ``So let's treat it.''
The couple soon learned that was easier said than done. ``The doctors say to get screened, they do the screening and find it, but then have difficulty treating the autoimmune type of uveitis, because it keeps coming back,'' Steve says.
II. LYMENET: Lyme Disease and the Eye --------------------------------------- Sender: Phyllis S. Tysenhouse
The following material was presented on September 28, 1996, at the Conference, "Lyme Disease: The Current Issues", Dayton, Ohio, by Lou Chorich, MD.
He is a Vitreo-Retinal Fellow at the Ohio State University Medical School. This is based on notes I took at the conference, so I regret any omissions or errors that may have slipped in.
Lyme disease is a challenge for ophthalmologists who may recognize Lyme-related problems in any or all parts of the eye. Ocular inflammation is called "uveitis", which is derived from the Latin word, uvea, meaning grape.
Lyme disease can cause conjunctivitis, or "pink eye". Uveitis may affect the anterior, intermediate, or posterior portions of the eye.
Light sensitivity occurs if there is much inflammation of the iris, the colored portion of the eye that regulates the size of the pupil.
Inflammation of the iris (iritis) causes photophobia. Cyclitis is inflammation of the ciliary body, which is made up of muscles that control the focusing ability of the eye.
The retina and the middle layer of the eye are rich in blood vessels which can carry Borrelia burgdorferi into the eye.
Normally, the blood vessels in the eye are tightly closed, but if infection is present, white blood cells, proteins, and lipids, leak out into the aqueous, the gel-like substance that fills the anterior chamber.
When these substances float in the aqueous, the patient is aware of "floaters". Dr. Chorich spoke of the "blood-eye barrier", which is similar to the blood-brain barrier that restricts access of certain substances to the brain.
So normally, bacteria and other substances do not enter the eye. Sometimes inflammatory debris collects on the back of the eye and may stay there for a year. This produces blurred vision.
The cornea may even stick to the lens, preventing the pupil from dilating fully. Clouding of the cornea is called interstitial keratitis.
The posterior chamber of the eye consists of a front and intermediate part that is filled with vitreous. White blood cells sometimes stick on the collagen that floats in the vitreous.
Blurred vision may cause the patient to see double or see black spots in the eye. Elevated internal eye pressure can occur if inflammation blocks the drainage channels of the eye, permitting fluid to build up.
On the other hand, intraocular inflammation can even lower the intraocular pressure because fluid is not produced in the eye during inflammation.
Patients can get a Jarisch-Herxheimer reaction in the eye, causing much inflammation. This could lead to a detached retina from fluid building up behind the retina.
Treatment of Lyme disease will relieve uveitis. Some of the antibiotics used are:
Tetracycline and its derivative, Doxycycline Penicillin and its derivatives Rocephin IV (ceftriaxone) other cephalosporins
Concurrent use of steroids may be used to decrease inflammation. If inflammation is not treated, permanent damage to the eye could result.
Steroid therapy has been responsible for causing cataracts and should be used judiciously.
Dr. Chorich recommended the article, "Ocular Manifestations of Lyme" by R.L. Lesser in the American Journal of Medicine, vol 98 (4A), April 24, 1995, pp. 605 - 625.
IP: Logged |
bettyg
Unregistered
posted
welcome steve to our board; glad you found us!
thanks for your response to 1 of our members; however i/others with neuro lyme can not read it all due to the longer, solid block text where we can not comprehend and read!
could you break that up into smaller paragraphs so we can understand and read it all?? big thanks instructions below...
also, did you overlook in MY PROFILE TO ENABLE private messages?
it is also how i send my newbie package to others joining...
WELCOME, would you like a FREE copy of my newbie package of 124 pages info galore sent by LYMENET'S PRIVATE MESSAGE system here; includes TREEPATROL'S LINK of his archive of over 1000 links of good lyme info?
I've been completely REORGANIZING it; NOT DONE YET; but up to page 60 since I have now created a TABLE OF CONTENTS WITHOUT PAGE NUMBERS since it changes DAILY! The part NOT organized yet is the last 30 pages of SSDI, ss disability insurance benefits tips/forms!
also, please go to TREEPATROL'S NEWBIE INFO IN MEDICAL; at top being features; mark it as a favorite! over 1000 links of good lyme info. He/I have some duplicates.
most of mine is very DETAILED info on certain things: SSDI/ss diability insurance benefits; FINANCIAL BURDENS; about IGENEX blood testing, symptoms lists for the basic types, NOIR/no infrared SUNGLASSES, etc. and how to use this board!
If you would like my newbie package, please send me a PRIVATE MESSAGE. PMs are the 2 people standing together icon to right of your name. Just ask me to send you lyme package, and I'll get it to you promptly. Thank you!
**********************
Also, if you are needing a LLMD, LYME LITERATE MD, please post on board in SEEKING DR. forum. Go to FORUM HOME, right corner click, and then chose seeking dr.
We ask that ALL members post in seeking dr. and START THEIR OWN ``NEW'' POSTS vs. adding on to someone else's because we can NOT keep track of who has been answered and who NEEDS to be replied to ok!
Many of you have been sending me a private message asking for llmd names and have NOT posted on the board. I require you to post online because when you show the state and largest cities nearest you; others from YOUR STATE WILL JUMP IN and give you the MOST CURRENT info that they have.
We have nationwide lists do NOT have most current info! We do what we can, but we depend on members to share all updates, deletions, phone nos. not working or changed, etc. with us. Then we let the others know promptly who have lists!
So thank you for starting YOUR OWN POST in seeking dr! We/I will help you as much as possible over there! Betty *******************************************
When you post or reply, please break up your solid, continuous block text
welcome to the board! many of us have neuro lyme where we can NOT read long solid block text and be able to comprehend and read it as is.
please edit your post by CLICKING PAPER/PENCIL ICON to right of your name. that opens up BOTH subject line and body text.
now please break up your WORDY SENTENCES into one sentence paragraphs. Then hit ENTER KEY ``THREE`` after each paragraph; we need that space for comprehension.
if you are NOT a wordy person, you can do 2 or 3 total ok. do this for your entire post.
NOTE: you do NOT have to use "", just show the name of person you are responding to, and then type your comment.
IF you need to use "", PLEASE DELETE "BOLD" CODES so it's regular type text we read vs. the DARK, HARSH/PAINFUL BOLDING.
specifically, delete the first 4 characters of 2ND LINE of a ""
[QB] just delete these 4 characters, and BOLDING is GONE! my eyes will really appreciate that; it's one very bad side effect of my having lyme for 38.5 years!! xox
then go to left hand corner and mark box to receive ALL REPLIES, and click EDIT SEND
we thank you for helping us; otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me. I'm also in the early stages of losing my eyesight from diabetes retinopathy.
IP: Logged |
Alv
Unregistered
posted
HI bettyg.
Just found out that after the article on the newsmagazine "ARTHRITIS TODAY "with the article of Steves and other parents ( I am sure now their kids in wheelchair -eye problems, and high fever -is related to lyme and coinfections ) ...had ALAN STEERE article right after it.
ANd you know what that means...You already know what he writes about LYME .
HE has the title as MD a professor of medicine at HARVARD MEDICAL SCHOOL and Massachusetts general Hospital in BOSTON.How can you not beilive what he is with ALL THESE TITLES that for people like us are no value -as that is the reason that we have suffered so LONG .
That is why all these parent accept the autoimmune respond ..DAHHH !!!!!!!!!!!
IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[group hug]](graemlins/grouphug.gif)
instructions below...![[Smile]](smile.gif)
![[Wink]](wink.gif)
otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me. I'm also in the early stages of losing my eyesight from diabetes retinopathy. ![[Frown]](frown.gif)
Printer-friendly view of this topic