Four years ago I had a red ring show up on my arm and several weeks later the left side of my face was numb (never had symptoms until then). I had several tests for MS which all came back normal or negative.

I also had an MRI which showed a couple of spots and the report said these could possibly be due to MS or Lyme.

I initially tested negative on an ELISA test but did test postive on a western blot.

I did see a Lyme doctor and did 3 months of antibiotics and have felt fine up until the double vision. The new neuro I went to back in June said it's definite clinical MS and wants me to start one of the MS drugs. He said Lyme only affects one eye and not both.

This neuro-opthomologist did a very thorough exam today and said that as of today there is nothing wrong with my eyes and he said he looked very hard to find something. I asked him if the double vision could be Lyme or MS related and he said it could be MS related. He said he's doesn't think it is Lyme because Lyme tends to be transient in nature and he thinks I had the double vision too long for it to be Lyme.

Although he thinks it could possibly be from MS he seemed unsure because my symptoms have been so mild. I told him the first neuro 4 years ago was on the fence about MS and he didn't disagree but he recommended that I see an MS specialist to maybe keep an eye on things.

The one thing I liked about him was that he said "if a doctor says he knows everything about a medical issue it should be time to find another doctor". I don't know if he was referring to my neuro's report in June which stated I had definite MS based on the eye exam and MRI (although no spots in optic area). I just thought the doctor today was more thoughtful and detailed in his exam.

Have any of your experienced this double vision due to Lyme and how long did it last?

I'm still not ruling out Lyme until I see my Lyme doctor which is tomorrow. If he says the same thing as the doctor today I may be more inclined to believe him but I'm going to check everything out before I make any decsions.

If anyone has any advice I would sure appreciate it.

Thanks,
Lin

I do have major blurriness, lines in my vision, spots in my vision, over-extended visions for long periods of time, lack of night vision (I cannot drive from before dusk till after the sun is up), a problem with perception (as in, I cannot judge distances or be able to tell which lane a vehicle is in - which is a major problem w/driving), eye pain (strain?), dry eyes and what feels like sand in my eyes. I've also had my eyes twitch early on.
 

quote:

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Originally posted by Linny:
He said Lyme only affects one eye and not both.

-----------------------------------
He said he's doesn't think it is Lyme because Lyme tends to be transient in nature and he thinks I had the double vision too long for it to be Lyme.

---

Wrong, wrong, wrong! I never had the double vision, but I know lots of Lyme patients do have that! I've been on this board for 5 yrs and have read this tons of times!

Glad you're seeing an LLMD.....Is he/she a "real" LLMD??? You got the referral from other Lyme patients who are satisfied with the care this dr has given them??

Keep us posted.

PS....MS drugs are band-aid approaches. They don't cure anything, only treat symptoms. Since you've had a positive WB for Lyme, that says it all!

------------------
Do not take anything I say as medical advice. I am not a doctor, but I DID stay at a Holiday Inn Express!
oops!
Lymetutu
 

I had double vision, which was actually my left eye shooting off into another direction whenever I looked to the left.
I'm pretty sure this lasted for about three weeks.
I also had eye pain, blurred vision in my right eye, vertigo, I was constantly squinting my eyes to see ( never really worked though), Bells palsy on the rt side of my face that travelled down the rt side of my throat. Whew, memory is shot.
If you need any other symptoms I had at this time I will have to consult my journal.

Anyhow, I was ALSO told it couldn't be anything else but MS. and that the one eye symptom was a classic symptom. I had an MRI that showed ten to fifteen 'lesions' and the one that was active wouldn't account for my eye thingy.
Yet, she STILL gave me that dx. That same week I made an appt with a LLMD and the same night( I think) I found Lymenet.
Get to the bottom of it and don't let them tell you what's wrong with you unless you have evaluated everything and exhausted every other option.
I think you should go back to your LLMD or get another one. and until then don't take any of those ms drugs.
Take care! and good luck!

------------------
-Kimmi
Just keep swimming!
 

If you get the MS lable you will have a very difficult time getting any true Medical Care. Everything gets atttributed to "your MS".

I know from experience. Diagnosed 17years with MS found out LYME induced MS reaction.
Boy could I tell some horror stories with neurologists.

Go back to your LLMD, three months of abx may not have been enough.

Just don't take steriods until you have seen an llmd for an eval. Steriods compromise the immune system and allow lyme to get worse.
 

I recently went to a prominent nuero opthamologist in Boston who told me my eyes are fine, and the problems are in my brain.

My double vision has improved greatly with IV abx for LD. I have been taking them since Nov 04.

I hope you have a great LLMD, and you can get some good information abt your vision.
 

My vision seems to have improved since I've been back on ABX..... maybe you didn't knock it all out.

- JB

 

quote:

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Originally posted by mlkeen:
Only one eye for lyme, that's a new one. Like the keets could be that selective!

---

While this seems hard to believe to you, that can indeed be the case. I am in the midst of quite a bad relapse after 5-6 good years and in fact, my right eye is being profoundly affected. The inflammation this time in the brain past the retina and optic nerve. In the past, with the last relapse, I've had inflammation in the optic nerve of the left eye, and when I was first ill in 1989 with meningitis, I had bilateraly eye involvement. All combinations and permutations are possible...
 

First of all there is no clear understanding of how B. burgdorferi creates inflammatory illness, or so strongly resists eradication by antibacterials (especially after infection has lasted for some time). Even in the rash erythema migrans, the organisms that have been detected so far are *extremely* sparse. There are certain concrete reasons to believe it *possible* that very tiny forms could exist and could have been missed by all investigators. Meanwhile we now have somewhat higher numbers reported from Bowen, but to my frustration, nothing at all has been published on that technique and what it reveals. So the disease is rather a mystery.

MS on the other hand, as has been noted above, is basically a syndrome, ie mystery from wall to wall. It may well be caused by spirochetal infection, as was concluded by many groups in the early 20th century using rather equivocal microscopic techniques. Extremely more powerful techniques were applied to this question in 2001 (2002?) by Brorson et al - you can look this finding up at pubmed.com. What they found were small numbers of spirochetes in 10 of 10 MS patients and 0 of 4 controls. The way this paper has been ignored by the MS research world is the most astonishing thing I have found in learning lots about bacteriology, immunology, disease, etc over the past year. I literally just cant believe it. Since MS scientists are ignoring this, patients who are able to may have to simply examine it for themselves.

I have not taken the time to understand in detail the meaning of all of the various observations hinting that autoimmunity may underlie MS, but when I read reviews addressing the cause of MS they seem to me to be clear and forthright about the fact that no definitive evidence supports any particular model of the disease which is under consideration in MS circles. Therefore I conclude that the Brorson finding is probably the clearest glimpse into the cause of MS which exists at this time.

I know little about immunosuppressants, but personally I would never consider taking immunosuppressants for an MS dx without learning exactly what evidence (ie studies of patient outcomes) there might be that show that doing so could be beneficial. On that basis, one could make a decision for onesself. I would also first give consideration to further antimicrobial therapy - possibly lots more of it. You might be interested in reading about David Wheldon's treatment of MS with antibacterials.

I dont even know what outcomes you getting treating lyme borreliosis with immunosuppressants, because I have been busy dealing with my antimicrobial treatment, which fortunately is going rather well. But ultimately for me nothing is off the table.
 

quote:

---

Originally posted by Lymetoo:
Wrong, wrong, wrong! I never had the double vision, but I know lots of Lyme patients do have that! I've been on this board for 5 yrs and have read this tons of times!

Glad you're seeing an LLMD.....Is he/she a "real" LLMD??? You got the referral from other Lyme patients who are satisfied with the care this dr has given them??

Keep us posted.

PS....MS drugs are band-aid approaches. They don't cure anything, only treat symptoms. Since you've had a positive WB for Lyme, that says it all!

---

There is a huge gap between the (lyme) researchers and the clinicians out there supposedly treating people.

IF these Dr.s - especially the pthalmologist - were reading the latest research, he would se that YES they eyes are involved with Lyme.

I had a lot of eye involvement - and I was also initially told when it presented it was autoimmune.

I had posterior Uveitis (inflammation in the back of the eye ) which includied eye symptoms of red eye, dry eye, pain when looking around, light sensitivity - shuimmering peripheral visual field - loss of vision in the upper quadrant of the right eye - central visial field problems (this was weird - the peripheral vision was clear and the central was like looking thru vaseline).

My point is - you need to see a Dr. that understand Lyme has recurred, and you need a lyme literate opthalmologist - or at least one who knows something about it.

Barb

 

The doctors you are seeing don't know what they're talking about.

Run in the other direction as fast as you can.

You have a proven case of Lyme disease.

You have never been completely cured and you need to be on a longer, more intense course of antibiotics.

You need to go to a doctor who knows more about Lyme Disease than just how to spell it.

I think it is shameful that in the Commonwealth of Massachusetts, where Lyme is rampant, these idiot doctors don't know what they're talking about.

Absolutely shameful.
 

I had tons of floaters too--
Both have gotten much better with ABX
--Jay--
 

Yes, I've had double vision. Was diagnosed with 6th nerve palsy but the cause was unknown.

Local opthamologist was really concerned and I ended up going to a neuro-opthamologist at Emory in Atlanta and then later to the Mayo.

Big waste of money and time because it ended up being Lyme related. Had so many tests done as you can imagine. Am still paying for those.

Antibiotics have helped my vision tremendously.

Do a search on this site in Medical for Tincup's post on 'Cranial Nerves'. It helped me alot to understand the symptoms I was experiencing.

If I were in your shoes, I'd go to an LLMD and get a proper diagnosis and start treatment asap.

BTW, my neurologist thought I had MS too.

Hope this helps.
 

I saw my LLMD on Monday~stands by Lyme dx~wants me on I.V. Rocephen.

LL Ophthamologist in PA is doing more testing in 3 weeks~feels I have both.

Lida-cultured cystic form of Lyme.

Dr.P~says ms due to Chronic Lyme Disease based on my spinal-tap results.

Full-Body MRI~Demyelination caused by Chronic Lyme Disease.

Dr.B-Lyme Disease
Dr.J.-Lyme Disease

I would trust my life with 2 of these Dr.'s...I pray you'll have an easier time than I've had for almost 14 yrs...please keep us posted!

Oh', I forgot to mention the flip-side...
1992_sciatica, bursitis, sports injury.

1993 Dubois neurologist-ms due to MRI.
Indiana neurologist-Same
Geisinger-inconclusive.
U. of Pitt, Falk Clinic-ms due to spinal-tap.
Hershey Med.-ms
GOOOOOOOOOOD LUCK!!!!!!!!!!!!
 

Could you please explain MS due to Chronic Lyme Disease? I don't understand this... Does this mean that you have MS-like symptoms, and will they get better with Lyme treatment?

Shelly
 

I believe that Dr. P. says MS due to cronic lyme is the MS response to lyme. Yes, I too have what I refer to is lyme induced MS.
I go to Dr. P. and two years in lyme treatment improving greatly. Almost "normal".
 

Is his new office handicapped accessible? He moved, didn't he? Is he or Lida able to repair demyelination or does it heal on its own when the infection is umder control?

Thanx So Much~Reno
 

So before this happens I just want to say that I saw the Lyme doc and he believes my vision issues were due to Lyme and not MS.

I asked him if you can only get Lyme in one eye and he said "no" which is what you guys already knew.

He also gave me the name of a neuro and opthomologist that treat Lyme in case I need confirmation.

Anyway, if I can get this computer to work right I'll send another post.

Thanks!
Lin