posted
Hi. Just curious if this is known among the many problems of Lyme or pretty uncommon.
One of my most umcomfortable symptoms I have is of all places, in the eyes.
They always feel irritated.
Usually crusty and/or with puss in the morning. Sometimes a little glued together.
My vision is fine for my age. Problem is in the eyelids and muscles around the eyes.
My upper eyelids retract giving a bugged out feeling and make little spasms and twitches all the time.
Believe it or not it's the most irritating thing I experience as well as being socially uncomfortable.
Sometimes I even withdrawal because of it.
Otherwise, beside a little brain fog and being not so sharp in the brain I feel physically pretty good.
Even my Gut has gotten better since on my Lyme diet.
I have no joint or muscle pain.
I can ride bikes, swim, run a little bit, even faster than a few of my friends...and play my guitar for hours,etc.
Sometimes I wonder if this is even a Lyme problem.
Posts: 128 | From California | Registered: Apr 2012
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Carol in PA
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quote:Originally posted by fred0: Eyes...always feel irritated. Usually crusty and/or with puss in the morning. Sometimes a little glued together.
Problem is in the eyelids and muscles around the eyes...little spasms and twitches all the time.
. Blepheritis may be due to Demodex mites, which live in the eyelash follicles. When Lyme causes immune problems, the body reacts to the mites.
Seabuckthorne oil is the solution. You can buy the oil and thin it with a carrier oil, and apply it to the eyelash area. Blot it off with a tissue or a paper napkin, as the oil is red and will stain cloth.
You can also buy soap and lotion for skin breakouts, look for Face Doctor brand, reviews at Amazon.com.
Do a search for Demodex mites to find info.
Regarding the eyelid twitches, this is a symptom of low magnesium. Are you taking magnesium? Which kind...look at the list of ingredients.
Low mag causes many of the Lyme symptoms. The liver needs magnesium to help detoxify poisons, and symptoms of low mag may be part of a herx.
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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I've tested for magnesium and the levels were fine.
I also get 300 mg of Magnesium from my Pure Encapsulations supplement recommended by my LLDM.
Posts: 128 | From California | Registered: Apr 2012
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posted
Actually I've had my eyes checked by the best here and they've never found anything except very slight dry eye.
The last Dr. I saw did see some infection on the rim of the lid and took a swipe for the lab.
Told me it was nothing but to use warm press.
The main problem seems to do with muscles around the eye,i.e. eyelid retracting a bit and spasming/twitching.
I guess that fits in well among another Lyme symptom.
Posts: 128 | From California | Registered: Apr 2012
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dbpei
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posted
fredo, I have started using coconut oil in my diet and read about its many uses. One of the things I have started doing is rubbing a small amount on my eyelids and under my eyes each evening.
It is anti-bacteria, anti-viral, and anti-fungal. I no longer have dark circles or puffiness around my eyes. I know that your problem is worse, but I thought it might help. You never know.
Good luck!
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Carol in PA
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quote:Originally posted by fred0: I've tested for magnesium and the levels were fine.
I also get 300 mg of Magnesium from my Pure Encapsulations supplement recommended by my LLDM.
. Demodex mites can cause both Blepheritis and dry eye. They feed on oils secreted by the hair follicles. If I can find the article I was reading a couple weeks ago, I'll post it here.
Blood tests for magnesium test the level of magnesium in the red blood cells, but do not indicate the magnesium in our muscle and nerve cells. So the blood test can be fine, and the nerves cells depleted.
This describes treatment for blepharitis, although it doesn't mention using Seabuckthorne. Blepharitis is related to Rosacea and autoimmune problems. Lyme may be related to autoimmune problems.
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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TF
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posted
From page 6 of Burrascano:
"Magnesium deficiency is very often present and quite severe. Hyperreflexia, muscle twitches, myocardial irritability, poor stamina and recurrent tight muscle spasms are clues to this deficiency.
Magnesium is predominantly an intracellular ion, so blood level testing is of little value."
Posts: 9931 | From Maryland | Registered: Dec 2007
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To me it's looking more and more like neuro Lyme problems.
Didn't know the name, but I've been checked often enough for Blepheritis.
In the direction of Hyperreflexia,etc. looks more like in the direction.
Mag. deficiency could be there although I have problems with muscle spasms no where esle.
I also take Magnesium everyday. Thx. again.
Posts: 128 | From California | Registered: Apr 2012
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AuntyLynn
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posted
Fred, you NEVER get an occational "charlie horse?" Or muscle spasm?
My magnesium deficiency was mostly in the eye too... a fluttering sensation.
I carry magnesium citrate with me and nibble on a tab with a glass of water until the symptom stops. (Usually about 200mg will do it!) Also keep it by my bedside for rare leg/foot cramps.
Posts: 1432 | From New Jersey | Registered: Jan 2012
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posted
I mean Magnesium citrate.
Posts: 128 | From California | Registered: Apr 2012
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AuntyLynn
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OK so it seems as though you should be getting enough magnesium at 700 mg per day ... unless you are a very large man, in which case, based upon your body weight, you may need more.
The way to find your magnesium tolerance is to gently increase the intake until you find you have "loose" stools. Then you will know what your dosage ceiling is.
How is your eyesight in general? When was the last time you saw an ophthalmologist? I would hate to think that Lyme is inflaming your optic nerve - but it is definitely possible, and quite common in neuro Lyme.
Do you have other neuro symptoms? You say you are experiencing some Brain fog; what about short-term memory loss, panic attacks, spatial imperceptions, anxiety, or depression? Are you seeing an LLMD?
Do you take Vitamin C or Tumeric/Curcumin? If not, both of these can help reduce inflammation, and might give you some relief.
Posts: 1432 | From New Jersey | Registered: Jan 2012
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For my age my eyesight is normal. I've been to the best orthalmologists in town.
I think it's more a facial nerve problem-muscles below eyes and eyelids.
Lots of tension there.
I have mostly neuro symptoms besides a few crackling bones, Tinitus and my Gut.
I have some brain fog,some short term memory loss at times, concentration and coordination decrease, untreated generalized anxiety.
Was diagnosed for years with S.A.D., winter depression which has never responded to anti-d. treatment or light therapy.
I take quite a bit of Vit. C
Maybe it's from the anxiety?
Posts: 128 | From California | Registered: Apr 2012
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AuntyLynn
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posted
Fred0 -
Not anxiety (although that's not to say you don't have it)...
What you have just seemed to have described to me is a CLASSIC Lyme Symptom, known as ...
BELL'S PALSY!
Where the 7th nerve leading down one side of the face goes useless, and starts to look like you have suffered a one-sided stroke!
How long have you been having these symptoms? Have you EVER been tested, or treated, for Lyme?Posts: 1432 | From New Jersey | Registered: Jan 2012
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I used to have these same exact symptoms. It gets better with treatment! Bart tx really helped with the eyelid twitching for me. Everything else has improved 85 percent too with my eyes due to tx. I see a top llmd.
Posts: 200 | From Boston | Registered: Sep 2010
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posted
It is not bells palsy, btw.
Posts: 200 | From Boston | Registered: Sep 2010
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AuntyLynn
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He described it as a "facial nerve problem." Seems to fit the bill.
Posts: 1432 | From New Jersey | Registered: Jan 2012
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AuntyLynn
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BTW Fred, my Mom tested positive for Bb with a spinal tap, by her FOURTH neurologist!
Everyone else just gave her anti-depressants for "anxiety." (She also had panic attacks that began in her 70s!)
She was also "diagnosed" with Irritable Bowel Syndrome along the way. Lyme can invade any organ.
Posts: 1432 | From New Jersey | Registered: Jan 2012
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I was just offering feedback based on my experience I was trying to be helpful and reply to fredo's inquiry, that is all. I am not interested in bickering with you about whether or not Bell's Palsy, " fit the bill", according to you. I don't appreciate the condescending tone you responded to me with. Thank you.
Posts: 200 | From Boston | Registered: Sep 2010
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AuntyLynn
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Sorry that you feel that way, no condescension intended! Your experience is valuable.
Posts: 1432 | From New Jersey | Registered: Jan 2012
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I'll just share what my experience has been. I have your eye symptoms. I have chronic blepharitis, Meibomian Gland Dysfunction, and Lacrimal Gland involvement.
It's of infectious origin according to my non-lyme literate opthalmalogist.
Interestingly, my issues really came to the fore when I started to treat for Bartonella aggressively. And my LLMD says that the eye problems I have are from Bart.
Bartonella causes ALOT of eye symptoms, syndromes, etc., -- many times it can be the cause of chronic eye syndromes. This can be verified in the published medical literature by the way.
Hope this helps.
oh ... by the way, most of the testing out there which would be done by a non-LLMD eye doc, will not necessarily detect Bartonella as the cause -- i.e., false negatives abound with Bartonella testing done by mainstream mill labs.
Even with the specialty labs, they'll be the first to admit, that sometimes it can be a pesky and difficult pathogen to culture. So you can have it and still test negative.
Posts: 503 | From Maryland | Registered: Oct 2007
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AuntyLynn-Thanks very much for all the info and helpful tips.
I just don't really think it's Bell's palsy because I've never had any form of facial paralysis or drooping of one side of the face.
The eye muscle tension, retraction and fluttering is very unilateral.
Both upper eye lids tend to retract (sometimes one lid sags a bit as if it's full of fluid), causing a very unpleasant feeling in the eye area.
Because of the slight eyelid retraction I've been tested multiple times for Hyperthyroid.
I've had these eye symptoms for a good 30 years off and on but never any facial paralysis.
@FuzzyS.- I took a real expensive test here (Europe) from a Lyme &Co-infections lab which came out Positive for Mycoplasma but Negative for Bart,Bab,etc.
They were aware that knew I had a tick bite while in America.
Admittedly, the test confused me a bit.
They are using this 'new', supposedly more sensitive test (of course not close to 100%) here called the 'Elispot LTT'.
I also tested with CD-57 . My result on that was 81. Supposedly not so,so bad.
An ILADS speaker and specialist told me the Elispot LTT will probably be coming to the U.S. soon.
On that test I showed Positive only for the co-infection Mycoplasma Pn. but it also possibly indicated that the Bb is not necessarily active right now although I have it.???
All a little confusing for me, especially since I feel soo louzy.
Anyways, the only thing that has 'slighly' helped with the very uncomfortable eye muscle tension is Diazepam (valium drops).
Of course, I can't stay on those forever as they only compound the whole problem in the long run.
It does appear that my eye symptoms are pretty strange after all.
Posts: 128 | From California | Registered: Apr 2012
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posted
@undiagnosed22- Thank you also for you input. Appreciate the support here!
Posts: 128 | From California | Registered: Apr 2012
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AuntyLynn
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Fred0 -
I'm glad to know that you are getting some very competent help.
I learn so much from the folks on these boards all the time, and I'm really grateful to have found this site, after having struggled to research (for my Mom) on my own, for over five years, without much family support. Mom had a positive spinal tap for Lyme 3 years ago, but they stopped treatment at the "standard IV" (28 days), and the infection seems to be catching up to her now.
Lately I just started to suspect that she may have Bart, but she has never been tested for any coinfections. Your eye symptoms are something I've never heard about.
I have no idea how Bartonella is treated, as opposed to Lyme or other co-infections. Can anyone clue me in what abx or herbs are typically used for Bart?
I wish you the very best Fred, in your journey to regain your health.
Posts: 1432 | From New Jersey | Registered: Jan 2012
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AuntyLynn
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Here are some very interesting articles on Bart by Dr. S ; who says that testing for Bartonella is very elusive, but there are other bio signs that can evidence its presence.
Quote: "Fourth, you should appreciate that it is unlikely you will ever be cured of Lyme in the presence of Bartonella. Why? Bartonella is a massive immune suppressing bacteria."
S, MD, MAR et al. Do Bartonella Infections Cause Agitation, Panic Disorder, and Treatment-Resistant Depression?
posted
Thanks AuntyLynn. Scary stuff. I will share it with my LL.
Like I said, Bartonella was tested for but came out negative.
I will ask him more specifically concerning my eye symptoms.
Posts: 128 | From California | Registered: Apr 2012
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lpkayak
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posted
i have seen many opthals over the years for the problems you describe and all they ever dx me with was severe dry eye.
last year a new opthalmologist to me (hes older tho) dx me with and infection and wanted me to take 1 doxy a day forever. he did not tell me the name of the infection but he described what you are describing. he says he has many patients with it. most have to stay on the doxy or sx come back a few get off it. i feel much better when on it and the sx come back when off it.
i take 4 mag tab srs a day and need that to keep leg spasms away. i still have a few eye spasms occasionally
also-i tested neg for bart but when i took rifampin i herxed very badly and by sticking it out i got rid of many sx i had had for yrs. my llmds have said bart testing isnt very good.
i wish my doc and fuzzys doc would talk. mine is not LL either...but i really respect him realizing something is going on. and he did say the critters ate the oil...now i cant find who mentioned that...but i bet we have the same thing going on
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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It eased me a bit knowing there are at least some others out there who have experienced the same eye symptoms.
I was starting to think it was just a head trip.
I've written on a few forums and talked to many docs but no one had ever heard of or experienced such a thing.
I'm curious to see if the Doxy will help when I start in the fall and I plan to ask about the Bart issue, though I also test neg..
Posts: 128 | From California | Registered: Apr 2012
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Lauralyme
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posted
700mg a day?
I take 2700mg a day
-------------------- Fall down seven times, get up eight ~Japanese proverb Posts: 1146 | From west coast | Registered: Mar 2008
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lymeinhell
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posted
It's the dosing of the magnesium milligrams that count. Your body can only absorb tiny amounts at a time, and the rest ends up in the toilet. Literally.
So 700mg at one time is not helpful. 100 mgs, taken 7 times a day, is more helpful in helping your body absorb it. Your vitamin D levels also need to be in the healthy range, and you also need calcium to process the magnesium. So just because you're swallowing pills doesn't necessarily mean the mag is getting inside your cells (as Carol mentioned above).
I had to do numerous Mag IV's and weekly injections to restore my magnesium levels (despite taking orals for a year).
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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AuntyLynn
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Good information Julie!
So magnesium needs to be dosed intermitently, just as Vitamin C must be, in order to get the most benefit.
Posts: 1432 | From New Jersey | Registered: Jan 2012
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Lauralyme
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Magnesium can't be taken at the same time as essential fatty acids, ie EPO
Something to pay attention to when taking it in intervals
-------------------- Fall down seven times, get up eight ~Japanese proverb Posts: 1146 | From west coast | Registered: Mar 2008
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posted
I had eye problems (eye twitching like inside the eye-red irritated eyes) too and I think it is BLO or mycoplasma, or FL1953.
I've been doing treatment for all of the above and many of my eye problems are getting better.
Posts: 697 | From CA | Registered: Dec 2011
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posted
mlg-thanks. I was diagnosed with mycoplasma. Maybe it has something to do with that.
Posts: 128 | From California | Registered: Apr 2012
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posted
I've read that magnesium is best absorbed through the skin, as in epsom salt baths, so I do that once a day along with about 1000mg supplements taken half in the morning and half in the evening with my omega oil.
Also, Fred0, you mention that your bart tests are negative, so I just want to remind you that bart is very hard to test for. A negative result doesn't mean much at all. There are many strains of bart.
Posts: 161 | From vancouver island | Registered: Feb 2012
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posted
Has anyone mentioned nystagmus to describe your eye spasms? My eyeballs "jiggle" and muscles spasm, and the MD who observed it called it nystagmus.
Physical therapists seem to know more about this than MD's. There are many possible causes, but for me, it seems to be associated with my neck (there is a connection between nerves in the neck and vision, as well as balance), and Baclofen (an MS med that is suggested for nystagmus) and oddly, Ben Gay on my neck, help me a lot.
Besides bending my neck back too much or jostling it, other triggers include scrolling on computers and bright flashing lights. Even when those are triggers, the Baclofen and Ben Gay help.
Have you had whiplash, a neck injury or strain, or any osteoarthritis in your neck?
This may sound off the wall, but try massaging your neck with Ben Gay and see if it helps!
Tai Chi has also helped me because it has trained me to hold my neck straight, and also helps balance.
Posts: 108 | From US | Registered: Apr 2012
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dbpei
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posted
I have been diagnosed with nystagmus also. I lost half of my balance functioning (and hearing) on one side due to lyme disease. This was caused by damage to the cranial nerve.
When I close my eyes, sometimes, I can feel my eyeball moving back and forth rapidly. I have not had any pain or pressure in that area though.
I did not know about Baclofen or Ben Gay helping with this. I do know that sight is a big part of our balance system and it has to compensate for our impaired vestibular system.
Posts: 2386 | From New England | Registered: Aug 2011
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posted
Baclofen is frequently prescribed for Nystagmus, and physical therapists who specialize in vertigo and balance issues can be really helpful. Balclofen apparently short-circuits communication between the spinal cord/nervous system and muscles.
I am having a period of trouble again, this week. I have not yet figured out what causes these bouts. I think it may have to do with inflammation of some kind. Though the cause of this problem may be deep, I once again got relief from a massage with Ben Gay and my friend Baclofen.
Chiropractor and PT both told me that I have pressure from inflammation that affects the nerves from brain stem to neck (cranial, like you) and possibly the blood supply as well. I have also been told this could be part of a basilar migraine, which I don't spend much time thinking about.
I find that training my eyes on one spot (tv, driving) helps as does a walk on a fairly straight street. Folk rememedies that I came up with myself. I just try to think about all the factors involved in balance, including ears, neck nerves, eyes, and sense of orientation in space. If my eyes are such a problem, then I try to beef up the others.
Today, I am also taking Sudafed and might do a squirt of Afrin in one nostril: taking care of fluid in my ears also helps.
Honestly, if our eyeballs are jiggling around, it is not surprising to have motion sickness!!
I don't really care anymore if this or any of my other issues are Lyme. It is so hard to get diagnoses and help for so many problems, from a medical system that seems to think in recipes. I just focus on what helps, and often I have to figure that out myself. But the Baclofen was an inspired idea from our local neurologist.
Good luck from another dizzy Lizzy!
Posts: 108 | From US | Registered: Apr 2012
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Catgirl
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posted
Nystagmus came with my vertigo. I had a severe case of it (had to be hospitalized). I've had it a couple of times. It comes with lyme and company.
Lyme & co treatment has eliminated it for me, thank god. But something like minocycline brings it right back, so I avoid that drug.
Also, acupuncture helped me git rid of vertigo better than any med my physical therapist or pcp gave me. Acupuncture is awesome for lyme!
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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posted
I cannot afford acupuncture. I take Tai Chi at a senior center for $4. The trouble with so many treatments that might work is that they cost too much. When it is my kids, I pay it, but for myself, I go with the med that cost $3.67/month and works.
Nystagmus has many causes, as does vertigo. It is great to hear that Lyme treatment helped Catgirl, but it didn't really help me past a certain point.I hope it helps others on here!
Posts: 108 | From US | Registered: Apr 2012
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dbpei
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I am really fortunate in that my brain has learned to compensate for my vestibular damage. But hearing and tinnitus have worsened recently. I don't want to hijack this post, so will instead post a new topic.
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