LymeNet Flash: Cranial nerve palsy?

This is topic Cranial nerve palsy? in forum Medical Questions at LymeNet Flash.

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Posted by brodiemac (Member # 7232) on :

I was treated for LD 10months ago (clinical diagnosis). Latest tests are equivocal and I am seeing an ID consultant shortly. Have suffered from head pressure, hearing sensitivity, tickling sensations in head and intermittent forehead numbness for months. I just noticed the other day during another 'numb' spell, that my eyebrows seem to press downwards to give me a hooded look. It went away when the numbness went. Does anyone know if this is a sign of mild Bells Palsy?

Posted by andie-ws (Member # 6116) on :

Dear Brodie,

So sorry you are having to deal with this!

Definately sounds like you have some on-going facial neuropathy going on. And Bell's can never be ruled out in early or late dissemminated Lyme.

The hearing sensitivity, numbness, tickling sensations and droopy eyebrows are all consistant w/ Bell's. Onset is usually fairly rapid (within a few days), one-sided and progressive.

At this juncture, more likely to be characterized as on-going neuropathy of facial nerves due to the Lyme rather than Bell's.

But, most important, do you have an LLMD?

And what lab were your tests sent to? Most general labs are notoriously bad for Lyme.

You mentioned you were seeing an ID soon but I'm worried you'll get the run-around, what with your current equivocal lab results and previous clinical diagnosis and treatment.

At best, I'm concerned a non-Lyme ID will order more tests to be sent to general lab facilities and send you off to a neurologist. Not necessarily bad things if you've got a differential diagnosis going on, but an utter waste of time, money and precious energy without a Lyme MD working on your case right away.

My suggestion, with your history and symptoms, would be to find an LLMD and/or a Neuro-LLMD right away. The neuro LLMD would be perfect because s/he can cover both the infection and neuro bases simultaneously.

Good luck and keep us posted!

andie, jc & julie
Lyme x 3

Posted by andie-ws (Member # 6116) on :

Dear Brodie,

My goodness, I just saw that you are in Scotland!

Yikes! I have no idea what the LLMD situation is over there. I do know we have some UK members who might be able to help and there are int'l resources but I'm not familiar.

I'll look into it and in the meantime I hope some other members will chime in.

Best regards,
andie, jc & julie
Lyme x 3

Posted by brodiemac (Member # 7232) on :

Regret to say the LLMD situation here is much worse than you have on the other side of the pond. I don't think there is one LD specialist in the whole of Scotland so we are stuck with the situation. My tests were done by a general lab - but it is run by a Consultant who is probably the best 'expert' we have on LD - you may have heard of him as he has written helpful books on ME/CFS etc - Dr Darrel Ho-Yen. My wife wrote to him after I had two negative ELISAs because our doctor would not do anything other than prescribe antidepressants. H-Y pushed our doctor to send another test then subjected it and the previous two (which must have been a bit elderly by now!) to full WB - he got equivocal results on all 3. One was a sample taken 3 weeks after my bite (too early), the second was a sample taken 5 months after treatment - the recent sample was almost a year from the bite.

He knows that an inadequate course of antibiotics can knock out your antibody response and adversely affect later tests. And I have a copy of a letter from him to our doctor which says and I quote "As you know, ELISA tests can produce false negative results in some patients". Nice to know that there are a few medical people out there who don't think ELISA is infallible. He then goes on to say about my tests - "The equivocal WB blot tests are consistent with this patient's history and treatment (my totally inadequate 21 days Doxy at 200mg last year) and are suggestive of LD. This patient will benefit from reassessment and possible further anti-mircobial therapy." I think he means that he thinks I may still have LD despite the test being only equivocal.

So this is the letter that has triggered the referral to the ID consultant. I have already seen a neurologist and am scheduled for a non-urgent MRI as he could not find anything untoward. But my forehead numbness and drooping eyebrows were not present on the day he saw me - it comes for a few days and then disappears for a few days.

So I think I am already doing what I can here - but if the ID consultant proves difficult to deal with, then my next step is one of the few LLMDs in England. And if that fails??? You may see me on the other side of the pond yet!

Brodiemac

Posted by Areneli (Member # 6740) on :

This may be an effect of Bb biotoxin circulating in your blood. You talk about spells that are often simply a result of toxin been circulated through liver and reabsorbed back with bile in intestines. If I am correct in your case the spells appear about two hours after meals containg fat.

Therefore treatment with Questran may help you a lot within several weeks of of such a treatment.

Posted by kumba (Member # 7733) on :

The only place I feel Safe, accepted and believed as far as my sx go is on this board. I even feel crazy telling the doctors but I keep a journal now and the heck with everyone else!! its the only other place I know that people get creepy crawly feelings in their head. Those darn spirochetes!!YOur question about cranial nerves, yup, i was chewing the other day and my jaws were so stiff I could barely eat me salad. then the left side of my face started to feel kind of numb and felt like my mouth was turning downward. I actually looked into the mirror. My conjunctiva turns pink sometimes a sign i just learned about. ringing in ears onoccasion, stuffy nose and ears and occasional swallowing/tongue problems. intermmttant and traveling as you all know. There isnt much part of me they havent at least visited.