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Posted by: In Indiana ® 06/06/2013, 04:33:33 |
Hi, All- I just ran across this article and will post the link in case anyone is interested in reading it. It describes blepharospasm as a symptom of Lyme disease. Lyme disease is passed on to humans through tick bites. http://www.optometryrounds.ca/crus/149-003%20English.pdf
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Posted by: Jeannie from Ohio ® 06/19/2013, 20:21:59 |
That may be true, but then I guess the blepharospasm would be considered secondary to Lyme disease. Benign Essential Blepharospasm would be primary, because of no known cause. Everyone who has BEB can't point to the same origination. Jeannie from Ohio who should be going to bed instead of posting on the bulletin board this late at night. :) zzzzzzzzzzzzzzzzzzz |
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Posted by: In Indiana ® 06/20/2013, 04:49:01 |
Hi, Jeannie- I hope you had a wonderful night's sleep ;o) I was passing the Lyme disease information on so that people will be aware. This is one of many diseases that has been thought to cause blepharospasm as a symptom. If someone lives in an area that has a high incidence of Lyme disease, and they spend time outdoors in tick-infested areas, and are diagnosed with blepharospasm (or BEB), it may be worthwhile to ask their health care provider to be tested for Lyme disease. You hit the nail on the head regarding primary vs. secondary blepharospasm vs. BEB. I can't help but to find the term "BEB" at times confusing and exclusionary, since only those patients deemed to have "BEB" would fit in, and the rest, who may have blepharospasm secondary to an ion channel disorder (migraine, myotonia, epilepsy, stroke, etc.), Parkinson's disease, untreated vitamin deficiency, chemical sensitivity, autoimmune disease, infection, allergy, etc. would not be a part of this BEB group. When you look in the medical literature, the term "benign essential blepharospasm" is rarely used. The terms that are utilized are "idiopathic", "primary", or "secondary" blepharospasm. When the term BEB is used, there is frequently the caveat that it is caused by a disorder of the basal ganglia. So then there is the question of whether BEB is caused by a basal ganglia disorder, or still of no known cause, but most likely a basal ganglia disorder. It gets confusing to me! In the case of a patient who has a history of Lyme disease, and later they are diagnosed with BEB, I wonder if it is really BEB, or secondary blepharospasm. Maybe it doesn't matter, because the treatment may still be the same, or maybe it does, if the Lyme disease had not yet been diagnosed/treated. Just a few thoughts for the day. Have a wonderful one!
Modified by In Indiana at Thu, Jun 20, 2013, 04:49:42 |
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Posted by: Jeannie from Ohio ® 06/20/2013, 13:27:37 |
Thanks for the clarification. I guess it is BEB unless something has been pinpointed. It would be great to know the cause, which may be multiple things as you state. In the meantime we go "blinking along." |
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Posted by: In Indiana ® 06/20/2013, 14:50:21 |
;o) |
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Posted by: pdb ® 06/21/2013, 17:40:25 |
Indy, I largely agree with you re blepharospasm versus BEB. I try to categorize things into two categories: BEB, which is primary blepharospasm, an idiopathic problem allegedly related to basal ganglia misbehavior; and blepharospasm, a broader category that means spasms of the eyelids, from any cause at all. If we had a definitive test that differentiated between primary blepharospasm (BEB) and any other cause of eyelid spasms, all those with the other causes (secondary blepharospasm) could go out and try to find that secondary cause, and if possible deal with it successfully. The others would be stuck with it. My skeptical view is that most of us have primary blepharospasm, i.e. BEB, and that won’t go away with diet change, acupuncture, holistic lifestyles, casting stones over the right shoulder on Thursdays, blue green algae, yoga or any of the other things one might try. Many if those might be good for the soul or one's general health, however. On the other hand some of those things might deal with the cause of secondary blepharospasm. So the great value of this board is that people can ask for and share ideas that seem to work in some cases – or can suggest investigation of possible causes not found by the diagnosing doctor. I do find my own reaction to some topics to be a bit colored by my above mentioned skeptical view. As an example: I’m highly skeptical that remission is something that can be traced to a cause or an action if one has primary blepharospasm. Perhaps I look at life through orange rather than rose tinted glasses. Should have got them from that place in Salt Lake City :-). Peter |
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Posted by: Jeannie from Ohio ® 06/21/2013, 19:56:39 |
RE: casting stones over the right shoulder on Thursdays Peter, I've been trying this for a long time and you're telling me it doesn't work? Should I be doing this on another day instead? Jeannie from Ohio |
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Posted by: In Indiana ® 06/22/2013, 04:29:53 |
Hi, Peter- I do get what you are saying regarding considering BEB and primary blepharospasm the same. Here's what makes me cringe about the basal ganglia/no cure/no remission aspect of BEB: 1) In order for symptoms and health to improve, patients need hope and health care providers need tools to help their patients heal. To say that there's simply a problem with the basal ganglia and there's nothing that can be done about it -eek! Extremely discouraging. Also, there could be a psychological self-fulfilling prophecy to this. If a patient is told over and over again that they will never improve because of this defect in their basal ganglia, my fear is that the more they hear it the more they will know it to be true. That patient may give up, with no sense of hope. I remember when I was first told about my basal ganglia problem - it was devastating, and at least in my case, I just don't think it was true. 2) We have SO much more information regarding general health and the prevention of specific diseases now than we did only a few years ago. I personally think that blepharospasm is like "The Perfect Storm". I can't help but to think there are ways to "calm the seas", such as an anti-inflammatory diet, exercise, positive thinking, etc. It's worked for me. It's not 100%, but it's much better than it was before, and my overall health is also greatly improved - bonus! 3) I wish that the BEBRF would consider an evidence-based approach of casting a "broad net" to make certain that the patients who present with blepharospasm aren't by chance dealing instead with a much more common problem, with blepharospasm as a symptom. To name a few, it seems so logical to me to make certain that everyone with blepharospasm has basic labs drawn, including a thyroid panel, vitamin D, and vitamin B12 levels. From the very beginning, it also seems to me to be a good idea for patients to be referred for emotional support. I am a huge fan of cognitive behavioral therapy, because it's been demonstrated to be an effective tool for many. Anyone with a condition so devastating that they can no longer work, drive, function, etc. needs some extra support, in my opinion. If health care providers are turning towards the BEBRF for answers, then they need ways to help their patients. There are very few chronic diseases out there which dietary and lifestyle modification are not included in the treatment plans. What I've seen over the past few years is that ALL of the neuromuscular type diseases (Parkinson's, MS, stroke, etc.) are being found to improve with these modifications. Why not blepharospasm? Since we don't have any research specifically that addresses this, the most prudent thing for all of us to do is embrace stress relief, exercise, and a healthy diet, knowing these things can make a difference in our overall health, but possibly for BEB as well.
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Posted by: pdb ® 06/22/2013, 09:22:40 |
To me the issue is balance between understanding the most likely situation versus giving people too much hope that something will help that in a huge percentage of situations will not. What this bulletin board hopefully provides is a place where people can learn, where people can share experiences of things that do and don't work (including those that work for some and not others), raise and discuss ideas, and a place where some level of emotional support is also available. In reality for most people, BEB is like many other ailments of a nasty kind. One starts with shock and disbelief and fear, but in the long run for most folk it devolves into understanding that there will be modifications to life that we have to come to terms with. The more we can help people to reach the point where they come to terms with it and live life to the fullest it allows, the better, IMHO. Peter |
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Posted by: In Indiana ® 06/22/2013, 11:26:38 |
Your humble opinion is well respected! I agree that it's a delicate balance, and that this message board is certainly a welcome source of emotional support. |
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