posted
I take it your muscle are twitching, cramping and more symptoms.
I've been diagnoised with bfs or benign fasciculation syndrome which is almost the same.
muscle twitching non stop till this day.
I think they will do an emg.
Posts: 64 | From New Jersey | Registered: Dec 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Whatever it's called (and there are various terms), it pretty much always goes along with neuroborreliosis.
I've never known anyone with lyme NOT to have neuro-excitatory symptoms affecting many systems.
An EMG can be very painful and I think nearly worthless. I know I have pain, other symptoms. I had an EMG done to confirm carpal tunnel but it was torture and told me nothing at all new. I did not need it confirmed. I KNEW it.
So, IMO, the best evaluation/assessment/"test"?
What you experience; symptoms.
You don't need needles stuck into your muscles to tell you what you already know.
Discuss this with your LLMD.
I would do no test that the LLMD would not think absolutely necessary - and would gather additional information that would lead to a miracle treatment that you could access no other way.
There is one thing I suggest evaluating, though: Diabetes. Diabetes can cause this, or make it worse. Diabetes can also be linked to lyme, so we have to be more vigilant.
Still, in addition to being sure your blood glucose is always stable,
one approach to help lessen symptoms of this - lower the NMDA neuro-excitability receptors by:
1) taking a good quality of Magnesium (or shots or IV drip);
2) avoiding L-glutamine in excess (MSG; certain supplements and excess of foods high in glutamine or glutamic acid).
3) antioxidants and liver support to lighten the toxicity overload that shoots the NMDA receptors to the moon.
4) Support myelin sheath (protective coating around nerve). Lyme can destroy the myelin. Support is vital.
5) Myofascial release; cranio-sacral therapy; Feldenkrais or certain massage.
5) SOTO LIGHTWORKS, just Google that term.
6) Assess Heavy Metals - they can really tear away nerve function.
7) Assess parasites
I'm sure there are other things to help, too. -
[ 12-09-2011, 01:40 AM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Emg's are awfully painful, at least mine was. Although I did not have that dx, that I know of, I did have lots of damage to peripheral nerves. I can't remember all the dx I did have, but I know they were desperately trying to get MS in there. Carpal tunnel was one, as well as peripheral neuropathy. After the EMG, he commented that my large nerve fibers were ok, it was the small ones that were damaged. He then did MRI and found lesions so dx was MS, even though I did not meet the other diagnostic criteria.
Be careful!
-------------------- One day at a time Posts: 409 | From TX | Registered: Mar 2004
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- twicebitten brings up an important note about lesions being the main diagnostic marker of "MS" - "MS" can be lyme is disguise.
Demyelination is also a hallmark of "MS" but borrelia also eats away at the myelin sheath around nerve tissue.
For many with "MS" who were later diagnosed with lyme, after good treatment (& support) the "MS" was no longer in the picture.
Lyme often causes lesions on the spinal chord or in the brain. So that's important to remember. And lyme treatment (& support methods) can help lesions diminish, even disappear.
"MS" has also often been misdiagnosed when the cause has actually been Cpn.
You might also try various cross searches around toxins, or toxicity.
And a search involving aspartame & MSG.
There is a connection is between asparatame, MSG, and nerve disease. Even if you think you are free of all that, be sure to check all products, all the names they hide under. See Blaylock link below.
I also wonder if the so-called "natural flavors" might also be toxic. My body has a reaction.
===============================================
About "natural flavors" - the unnatural processing they go through, and just some of the possible links to ill effects are discussed here: -------------
YouTube video search: Russell Blaylock -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Bugg
Frequent Contributor (1K+ posts)
Member # 8095
posted
Thanks so much for all of the responses...
Yes, Mountaineer, I was really focusing on BFS or Neuromyotonia.....Even after extensive lyme treatment, I still have alot of the symptoms that go with a form of peripheral nerve hyperexcitability (hyperreflexia; fasciculations; muscles in legs feel very tight and sore; fatigue)..
I know there are palliative drugs you can take for BFS so I was wondering if anyone has gone this route.....
Posts: 1155 | From Southeast | Registered: Oct 2005
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
Bugg, How much magnesium have you been taking? Muscle twitches and spasms may be due to low magnesium levels in the nerves.
posted
I tried all prescriptions for bfs but they basically just mask things and you dont feel much better.
Posts: 64 | From New Jersey | Registered: Dec 2007
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posted
I treat with neurologist. If you have twitches in areas that are especially bothersome (face for example) botox injections twice a year will do the trick. I have them as part of palliative treatment.
I also, unfortunately, must take medication to control the hyperexcitability.
I take magnesium but in my case it is not curative.
You are correct, the drugs are not curative either. What you need to try is the best combination of nutrition, and if needed, medication. Manage the best you can.
Good luck. If you have success please share
Posts: 172 | From ohio | Registered: Feb 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Taurine, along with magnesium, can really help calm the NMDA excitatory nerve receptors.
Try first before bedtime as it can be rather calming. Then you can figure out what kind of dose would work best for daytime.
Vegetarians, especially, must supplement with taurine. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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