Does anybody know which form of Lyme (cyst, spirochete, or the other that I can't remember!) is the one that invades the 5th and 7th facial nerve?
Posted by little_olive (Member # 28063) on :
Not sure, but my cranial neuropathies really stirred up after Rifampin, which of course treats bartonella but also the cyst form of Lyme. Like, a lot. I had Bell's palsy all over again!
Also note that mycoplasma causes bell's palsy just as frequently as Lyme disease does.
Posted by marypart (Member # 27012) on :
lil-olive,
Did they go away? I'm thinking of using rifampin.
Posted by Robin123 (Member # 9197) on :
I thought the spirochete likes lipids, which is a major component of nerves, so it's the spirochetes hitting the nerves. Correct?
Posted by joysie (Member # 11063) on :
Sasha, why do you ask? I am always interested in other people's facial symptoms.
Posted by little_olive (Member # 28063) on :
BY THE WAY I wasn't saying that the cyst form causes those symptoms! Because partof having the cyst form is that it DOESN'T cause symptoms. But I think whatever it converts to FROM the cyst form, might be to blame. I reckon it's like a fresh infection? Sure acts like it.
And yes mary they're less severe now though I still have partial paralysis of certain facial muscles. Hoping it will go away with time,a fter the nerves heal up
little olive
Posted by SashaC (Member # 18968) on :
Joysie,
I have almost non-stop facial pain. My neurologist said the symptoms are alot like trigeminal neuralgia, only my pain occurs simultaneously on both sides of my face. He said that the two trigeminal (5th cranial) nerves wokd separately from one another, so my pain would most likely be unilateral if it were TN.
My teeth throb into my gums, where it feels like I need to have every one of my upper teeth pulled, especially my two front teeth. I have this nearly unbearable, intense pressure over the roof of my mouth and behind my nose and eyes. My jaw aches at the hinge points so much so that it is painful to touch, and my temples never stop pounding.
This was my very first symptom of Lyme, and it has progressed over the years until it became constant.
After maxing out on anti-seizure and pain meds, I even went so far as to have a balloon compression neurosurgery last year, which did absolutely nothing to ease the pain. It left me with half my chin and tongue permanently numb, but no pain relief.
I then found a neurosurgeon in MI who was somewhat Lyme literate. He told me that up to 1/4 of LD patients have symptoms of TN, and that my sx would not go away until I successfully treated my Lyme. He said I could have as many neurosurgeries as I wanted, but my pain would continue recurring until the Lyme was gone.
My current LLMD is not exactly what I would call effective, and I have to wait until early July to see my new one.
In the meantime, my PCP told me that he would be happy to prescribe the abx I needed, which was incredibly nice of him.
I just don't know what abx would be the one that would target the form that invades the facial nerves.
I've already tried mino, amoxy, malarone, levaquin, bactrim, sulfa, tindamax and so many more....
Flagyl makes my pain twice as bad, so I am assuming that it is probably going to be the abx I should take.
I just wanted to ask other LD sufferers if they had any similar symptoms, and what med seemed to help the most.
I'm pretty desperate to get rid of this orofacial pain. I would trade any kind of pain from the neck down if I could get rid of this!
Posted by METALLlC BLUE (Member # 6628) on :
They all do.
Posted by joysie (Member # 11063) on :
My symptoms are different, they are very mild on a pain scale-some jaw and minor tooth pain at times.
I do have an eyebrow that raises of it's own accord, and buzzing, numbness, vibrating in my face so badly that it almost itches at times. I also have the sensations of sticky eyebrows, droopy eyebrows,facial twitching, etc.
What has helped me tremendously is Rifampin, doxy & tindamax.Not sure it's the same issue, but wanted to let you know.
Posted by farraday (Member # 21494) on :
I agree. I think they all do. My facial problems have been going on for many years. My dentist insisted I had TMJ due to stress. I ground down my teeth and even broke one off at the base of it.
My good friend Boxermom suggested I try Buspar for the jaw pain and clenching. It has worked like a charm! I take it twice a day and my jaw is very much relaxed.
I still have teeth chattering (and trembling) when I am tired and I also have twitching eyes at times.
One of the best remedies of all is cranial sacral massage. If you can find someone to do it, DO IT! Check out your insurance plan to see how you can get it covered.
If not, get your spouse or friend to sit at the end of your bed and hold your head with both hands about 4 or 5 inches off the bed. Quietly lie there, relaxed, like that for 5 minutes. It helps enormously!
Posted by Lymetoo (Member # 743) on :
farraday.. My cranio sacral therapist told me to put two tennis balls in a towel and kind of wrap it around them. Then lie your head back on the balls. You want them to rest on either side of your spine at the base of your neck.
Posted by Runner17 (Member # 30272) on :
I also have mostly facial symptoms. My face constantly hurts on both sides. My teeth hurt into my gums. I also get vibrating in my face and occasional facial twitching.
My LLMD said that Lyme and co could be attacking this area because of cavitations in my mouth. Possibly from when I got my wisdom teeth extracted. I've had almost no dental work done. Only one cavity and the wisdom teeth extracted, so I didn't think that would be an issue for me. But i guess having wisdom teeth out can create an empty "pocket" for the bacteria to invade.
I may look into going to a biological dentist if this pain continues.
Sasha- have you had dental work? Any mercury fillings? If so that might need to be addressed as well.
Posted by SashaC (Member # 18968) on :
Runner, Yes, I had a complete dental workup...Nothing going on there. The dentist is the first place I went when my teeth started pounding.
I had a gasserion ganglion nerve block last year, and it took my pain away immediately.
Unfortunately, the pain relief only lasts for 2 or 3 days. And they used no anesthesia while sticking a needle through my face and into my nerve. I will never have a procedure like that again!
Posted by map1131 (Member # 2022) on :
Metallic you beat me to it....they all do.
Neck and cranial nerve pain are lyme lyme lyme.
Yeap rifampin will stir up the lyme sx. It really ticked off the cranial and neck area for me recently.
I was going after bart with rifampin and it made lyme mad. Many lyme sx flared up big time.
Pam
Posted by SashaC (Member # 18968) on :
I wonder, is it possible to take rifampin at the same time as plaquenil, biaxin, and maybe a little flagyl?
I have rifampin here, I got it filled and haven't used it.
Posted by little_olive (Member # 28063) on :
What did your doctor tell you to do?
Posted by map1131 (Member # 2022) on :
Well, I'm certainly not a doctor and or anyone on this site.
I would ask your doctor what to do. I certainly wouldn't add another abx to the 3 monsters you are already on without my doctor telling me to do it.
Sasha, not good on your part to think more is better. More could be a disaster to you and your health.
Make a note to talk with you doc about rifampin on your next visit.
Pam
Posted by SashaC (Member # 18968) on :
Sorry, I was just wondering out loud. I'm done with my last LLMD. I'm seeing a new one soon, I'd not start a new medication with all I'm taking already. I've never tried rifampin before.
Flagyl is already giving me a monstrous headache...don't think I could handle much more right now.
I always like to ask about different abx combos, if anyone on here has had good of bad results.
Posted by Shahbah (Member # 28735) on :
SashaC, I have the exact same problem, cranial nerves all hurt like crazy, but also the rest of my nerves all over my body hurt too... I wnt to a traditionnal healer who explained to me that tis nerve pain is coming from our stomach adn gut bacteria, those bacteria are tied to our immune system but we have waaaayyy to many of them and they cause nerve inflammation (as you you know our gut g=has more nerve endings than our CNS...). So no matter how many abx we swallow, how many interventions or dentla work we havem it is not going to work, because the real cause lies down in our tummies.... So what do we do about that? just wait....
Posted by Lymetoo (Member # 743) on :
Flagyl can cause nerve pain.
Posted by Shahbah (Member # 28735) on :
I wish someone could say he was cured from cranial neuropathy through lyme treatment, but o far I have never seen such a post...