posted
I went to a neuro-ophthalmologist that is LL and the one eye test came back that there is slowed transmission in both optic nerves and that the amplitudes of transmission were fine.
I recently was told I have MS and got started on copaxone because I have alot of spots on my brain,but have gotten better than before and hardly any symptoms left. Neurologists say that the antibiotics and copaxone won't interfere with each other and it's fine to be on both.
LLMD is saying that he doesn't think MS and that the late stage chronic lyme did it. That it is not an auto-immune disorder.What tests are good to rule out MS?Any info.would be great on lyme thanks Posts: 18 | From tickland,pa | Registered: Jul 2009
| IP: Logged |
posted
I also see black squiggly lines in eyes when looking at a white wall and move eyes back&forth What does that mean?Anyone else have them? I am always told that they are floaters and are normal,but got more. I think it is from lyme and co-infections. Posts: 18 | From tickland,pa | Registered: Jul 2009
| IP: Logged |
bettyg
Unregistered
posted
welcome stinky, just kidding lol ... have to laugh at things when you have what we have. hugs/kisses
but happy you went to a LL eye dr!!
yes, LYME STINKS! plus the runaround on wrong diagnosis for decades!!
i'll attach what eye links i have; check out TREEPATROL'S NEWBIE LINKS; found at the end of my post ok!
Welcome; I'm so glad you found us!! You've come to the right place for education and support!
Betty's suggested POSTING GUIDELINES . 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 ``TWICE`` after each paragraph; we need that space for comprehension.
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. ------------------------------------------------------
People seeking doctors might be able to get help from their state online information and support group. Nearly 3,400 people belong to state groups. Some of the groups are small but more than 20 of them have 50 or more people and seven have over 100.
The groups are moderated and you have to apply. Most don't allow doctor names, but once on the group, you can ask for doctors in a certain area and ask people to email you privately. *******************************************
This explains the medical politics around lyme WHY you need an ILADS-educated or ILADS-member LLMD (and there are also some ILADS-member LL NDs (naturopathic doctors):
You should also be evaluated for coinfections. Not all tests are great in that regard, either, but a good LLMD can evaluate you and then guide you in testing. One of the top labs is:
"With most infections, your immune system first forms IgM antibodies, then in about 2 to 4 weeks, you see IgG antibodies. In some infections, IgG antibodies may be detectable for years.
Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.
But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies.
Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result.
Response to antibiotics is the same if either is positive, or both. Some antibodies against the borrelia are given more significance if they are IgG versus IgM, or vice versa.
Since this is a chronic persistent infection, this does not make a lot of sense to me. A newly formed Borrelia burgdorferi should have the same antigen parts as the previous bacteria that produced it.
But anyway, from my clinical experience, these borrelia associated bands usually predict a clinical change in symptoms with antibiotics, regardless of whether they are IgG or IgM." ===========
ILADS The International Lyme and Associated Diseases Society (ILADS) provides a forum for health science professionals to share their wealth of knowledge regarding the management of Lyme and associated diseases.
UNDER OUR SKIN dvd LYME DISEASE documentary, www.lymediseasefilm.com go to this site to view trailer of UNDER OUR SKIN 5 min. Clip! Premiering 2008!! on big screen 09 in 10 LARGE CITIES ONLY!
please get a western blot igm and igg blood test drawn LOCALLY on a mon. or tues. and sent to the below ok! all details are there.
IGENEX , CALIF. BLOOD TESTINGS ...check current $$!
* Please note: What you are about to read below is NOT meant to scare any of you from any lyme testings done; it's meant to be informed PRIOR to going into having various tests done and then be told what the costs will be! * Mine was sticker $$ shock on various testings done by my 2nd LLMD/new to me in 4=06. Those tests/results are found elsewhere in my links/advise.
* Igenex's charges for these below things cost $905, which I figured up the last 2 days for 2 other folks includes
* The below tests were done for ME; you MAY NOT NEED them all ok! :
* western blot IGM & IGG, this is MANDATORY for you which costs $200 total for 2 tests done; 6.09 same prices still. * * ******************************************************* * OPTIONAL ONES ARE:
* co-infection panel for YOUR AREA OF COUNTRY; * PCR WHOLE BLOOD...this is what my LLMD ordered!
It's PREPAY! unless you are on medicare; IGX will file the paperwork & it's FREE to you.
go to www.igenex.com and read over their info. Prices go up twice a year: MAY and NOVEMBER!!
* * have blood drawn MON. or TUES. only; you don't want your blood sitting in post office over the weekend; will ruin the results!
* Also, call 1-800.832.3200 for CURRENT PRICES! * They will also send you a ``test kit'' with their required form, all the test vials, & box to ship it in! OUT OF USA will take longer to receive!
* You need to DOWNLOAD IGENEX's required form.****************************************************** * * MD, DO ,ND, AC, DC are all fine** must sign, date, and show DIAGNOSIS CODE on there why he's ordering the test.
Make sure you show to FAX results and SNAIL MAIL PAPER COPY! My results were lost for 4-5 weeks! Bettyg * * When you get your results, please post them in MEDICAL; * Post ONLY the POSITIVE & IND ones .... not the negative ones!
GET COPIES OF ALL YOUR SPECIAL BLOOD TESTS: western blot igm/igg and/or co-infection tests always!!
OVERSEAS INSTRUCTIONS FOR SENDING TO IGENEX/FRY LABORATORY! 2-23-08
EYE SENSITIVITIES & NOIR, no infrared sunglasses info., 2-28-06 updated YES, I have what you have! Are you on doxy too? That made my extreme eyes 200% MORE sensitive than they we were earlier. I learned a lot about eye sensitivity/lighting on www.marshallprotocol.com board. http://www.marshallprotocol.com/forum2/4.html detailed!
You will need 2% amber and 10% amber ... Style no. 901 and 910. 1-800-521-9746 TOLL- FREE, ONE YEAR GUARANTEE!
mention you have lyme and marshall protocol, they will give you 10% off! I'm NOT on MProtocol, but mention it anyway. I was on their new board almost 12 months!
Also they have been kind enough to replace the SCRATCHED LENSES & BROKEN BOWS! How's that for service? I'VE NOT had to return broken/scratched lenses!!
In fact, I have a terrible time where they drop to the floor, and 1 of bows will break off the connecting PLASTIC piece connecting to the lense itself. They just take the info over the phone from YOUR STATE'S REP!
I don't drive often at night, but I can wear NOIR's 901 lenses at night while driving; it creates soft candle lights coming at me...tolerable. NOT to wear in town with all the action of people crossing where they shouldn't be.
Driving daylight hours, be sure to wear DRIVING GLOVES and a LONG SLEEVE SHIRT/JACKET so you will NOT SUNBURN ! I got burnt bad on my 1st out of state trip to new LLMD in Minn.
I wear my darkest tinted RX sunglasses always with my NOIR wraparounds over them, and my floppy straw hat too; shields my face/side views
NOTE: Wearing sunglasses that BLOCK ULTRA VIOLET LIGHT, help to prevent CATARACTS.
There is also something that is called "Scheerer's phenomenon" or "blue field entoptic phenomenon". This is basically the ability to see white blood cells traveling through in the squiggly capillaries of your retinas... especially when looking at a blue light. (like the sky) When a leukocyte travels through.. it makes a wiggling motion. The link below is v\ery interesting and even has an impression of this phenomenon. "Scheerer's phenomenon"
Eye pressure up to 29 may be normal. Not a very good test for glaucoma. Better to look for dammage to optic nerve (visual nerve) with dilated exam. When in doubt, a threshold visual field test (painless but boring) can be done to detect early glaucoma.
Other reliable tests that can help pick up glaucoma include corneal pachymetry and gonioscopy.
I agree that optic neuritis is a much greater concern with Lyme than glaucoma, but of course the possibility of glaucoma still exists in everyone.
If you're quite concerned about glaucoma, easiest way to rule it out would be the visual field route. Maybe ask a glaucoma specialist for a second opinion.
NOISE/SOUNDS .... MAGNESIUM by Carol in PA, 7.3.09 Supplement with magnesium to help hypersensitive hearing.
Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
I think it is the Lyme. Or Neuroborreliosis if you prefer. It affects the nerves and eyes have a big optic nerve.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
| IP: Logged |
Starfall1969
Frequent Contributor (1K+ posts)
Member # 17353
posted
I am being treated for Lyme and Ehrlichia, and still not convinced babesia isn't in there too.
I have had eye involvement for over a year.
I get increased floaters, blurred vison, general inability to focus, eye pain, flashing lights, and one pupil dilates abnormally.
Been to several eye doctors who test for retinal detachment, macular degeneration, all that, and all comes back normal.
Recently, it seems that all my other symptoms have either cleared up or are at least better, but my eyes are going absolutely CRAZY.
I'm switchiing between eyeglasses, and I really can't see perfectly with either (I never really could, one lazy eye and the other overcompensates).
We have no vision insurance, so I can't afford to keep going back to the eye doctor every few weeks or months, so I just deal with it.
I want to go see a neuro-opthamologist, but at this point it's not financially a good idea.
I'm just trying to up my antioxidants to see if that helps.
Posts: 1682 | From Dillsburg, PA | Registered: Sep 2008
| IP: Logged |
sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
I have had eye issues since day one of this illness. I have floaters and my vision blurs in and out when I try to read....so annoying. I also see halos around lights which is suppose to be a sign of cataracts or glaucoma. My eye doc says I have neither.
I also have very dry, red eyes and pain in the eyeball and around the eyes. Eye doc says eyes are great. Yeah righ! It has to be lyme.
I don't think there are any good test to rule MS in or out. The lesions are a sign of MS and Lyme also. A spinal is suppose to show something, but doesn't always show. I think in the end it is still a clinical diagnosis with test used to back it up just like LD.
Posts: 4035 | From Mississippi | Registered: Jul 2008
| IP: Logged |
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Lyme gave me dry eye, which means your eyes get red, irritated, water, vision blurs, etc. all from lack of tears. (Also gave me dry mouth.)
Good lyme treatment got rid of the problem.
I once experienced gaps in my visual field also. I could see a person's body, but there was a blur where the head should be. Couldn't read what I had just typed on email, etc.
Had to get my hubby to drive me home that day. Things got much worse that day--brain shut down, basically. I couldn't think, walk, talk, move, etc. All returned to normal the next day.
Lyme is basically a neurological disease, and can attack any nerve in the body at any time and for any amount of time, so you never know what it will do to your vision, hearing, brain function, etc.
It gave me mild bilateral bells palsy for 3 1/2 years. I thought it was normal aging and considered a face lift. Then, one day, I woke up and the horrible facial drooping was gone! (That's caused by an attack on facial nerves.)
Lyme gave me lesions on the brain. Good lyme treatment got rid of them.
MS is a diagnosis of exclusion, meaning once they have excluded lyme disease and all other possible causes, then they are allowed to give you the MS diagnosis.
Obviously, lyme cannot be excluded in your case.
There is no definitive test for MS, and no definitive symptom.
Here's just one example of an MS website that says these things:
posted
I have always had weird eye symptoms with Lyme. The most recent discovery is a nystagmus in my R eye. My most severe head pains are behind my right eye as well. I also have intense light sensitivity and dryness like others have mentioned.
-------------------- Sofi Posts: 150 | From Northern California | Registered: Jun 2009
| IP: Logged |
posted
My son started having issues with his vision at age 5.... began with visual hallucinations (he saw fish, bugs blowing bubbles etc)., went through MRI's, EEGs, opthomologists, neurologists....
Tests didn't show anything definite & though the only thing positive was my son's lyme, all were hesitant to say it was lyme related.
Vision quieted down for a bit, but then came back as blurry vision & what he called "black outs". He would become dizzy & not stand well when blurry & actually bumped into things at school when the vision blacked out.
I was afraid he might go blind. Which finally made me seek our Dr. J....
Interestingly, he was not positive for co-infections, but lyme very positive.
Under treatment now...
-------------------- Mom to a 5 year old lymie.... Taking it one day at a time. Posts: 182 | From Ipswich, MA | Registered: Jul 2008
| IP: Logged |
posted
The most useful tests for MS in the eye are:
visual acuity color vision testing pupillary assesment dilated retinal exam (to include careful optic nerve evaluation) Optical Coherence Tomography (latest,greatest in-office test to map out the the integrity of the nerve and it's nerve fiber layer) Visual Evoked Potentials or Electro-retinal exam (apparently you had this and it was normal)
Those are the standard tests to work up MS. They are also the standard tests (except the VEP or ERG...they are usually reserved for only the very difficult to diagnose)
bt
Posts: 299 | From New Hampshire | Registered: Jul 2007
| IP: Logged |
posted
Thank you everyone for giving me the information you know Eyebob, I'll have to ask my opto-neurologist if he did all the tests you named Alot of the symptoms that were named I have too The headaches behind eyes,light sensitivity,black squiggly floaters,feeling like I got punched in both eyes,blurry vision,focusing,and burning. Posts: 18 | From tickland,pa | Registered: Jul 2009
| 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!
![[confused]](graemlins/confused.gif)
![[dizzy]](graemlins/dizzy.gif)
![[Smile]](smile.gif)
lol ... have to laugh at things when you have what we have. hugs/kisses![[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. 
Printer-friendly view of this topic