posted
I've been treating for Lyme (especially Neuro) for 2 years with little improvement; I also have dealt with left sided trigeminal neuralgia for 7 years. If you've had TN pain, you'll know it can be unbearable.
After 5 years of doctors telling me I did not have TN, I found a wonderful surgeon who diagnosed me and I had Microvascular Decompression surgery on my left trigeminal and acoustic nerves 3 years ago. One nerve was compressed by an artery so padding was used to separate them. The other nerve was compressed by a blood vessel so the vessel was removed. Pain was relieved about 90%! At the time, my surgeon said blood vessels can grow back making new compressions.
Well, guess what - recent MRIs show new compressions on my facial nerve and vestibular nerve. Symptoms again are all left sided. Face, ear, head pain plus some hearing loss. Meds for TN have never helped; I've tried everything including every alternative treatment known to man. A second MVD surgery is an option.
My Question: I know Lyme causes all types of cranial nerve issues, pain, neuropathy. Maybe that's why I got TN in the first place. I wonder if it's worth having a second surgery or should I keep trying to get the Lyme/cranial nerve issues under control? I don't want the TN to keep coming back, but the symptoms are too debilitating to ignore. It's like the chicken and the egg...which came first?
I'm seeing a good LLMD and also taking Buhner's protocol. I'm treating for Babesia too. Very interested in getting a Doug Coil but I know nothing about them. I can't be online very long.
On a side note, I posted the Topic: "Cinnamon Oil got rid of Lyme? Is Link True?" on Jan. 7th and am so impressed that people take time to share their thoughts. This is a good, caring group of people. May God bless each of you.
Posts: 9 | From Country Girl | Registered: Jun 2011
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Robin, lyme disease certainly can cause trigeminal neuralgia. You can do a "search" on LymeNet to read all of the prior posts on this topic.
Just click on "search" near the top of the screen under "Post a Poll" and then type in "trigeminal neuralgia" as your search words. Search only the Medical Questions forum.
I got trigeminal neuralgia after nearly 2 years of lyme treatment. It was LOUSY lyme treatment, but I didn't know it at the time.
So, I went to hear Dr. Burrascano speak at a lyme support meeting. I submitted a question about my case, and Dr. B. selected my question to answer. Here is the question and his answer:
"What do you think of a patient on high dose antibiotic treatment who develops a new symptom--trigeminal neuralgia?"
Answer from Burrascano:
"If the therapy is inadequate, the disease will continue to progress."
Then, he went on to elaborate. If the patient is acquiring more symptoms, the antibiotic therapy is inadequate, etc.
I was in shock. I had read the Burrascano Guidelines and knew my doc wasn't following them, but at that moment I found out that the trigeminal neuralgia was due to this doctor's lousy treatment of me. My lyme was continuing to progress, per Burrascano!
You see, he had me on only one antibiotic. That was amoxicillin. It was a high dose. And, he had me on the required probinecid (not an antibiotic). While on this therapy for about 1 1/2 years I got the unbearable trigeminal neuralgia.
Right after this lyme meeting, I went back to my doc and he said, "Well, it looks like you are just one of those people who is going to have to stay on antibiotics the rest of your life." Baloney.
I left him, went to a Burrascano type lyme doctor, and I got rid of my trigeminal neuralgia, lyme, babesios, and bartonella. And, it only took 13 months.
This doc put me on the high dose amoxi with probinecid and added flagyl, a cyst buster. In 2 months, that was the end of my lyme disease and he moved on to the next disease.
You will notice in the Burrascano Guidelines that Burrascano says it takes 2 antibiotics taken simultaneously to get rid of lyme. That is because lyme will just change into another form in the presence of one med. It will change into a form that that med cannot kill. A good lyme doctor knows this and knows the various types of meds that kill lyme in all of its forms. My new doctor knew this and was easily able to change me treatment to stop the progression of lyme and even destroy it.
I accidentally found that Benadryl got rid of my trigeminal neuralgia, by the way. Try it and see if it works for you. Cranio-sacral therapy didn't help me. And I couldn't get up to a high dose of Neurontin, so that was no help either. But, getting great lyme treatment solved the problem totally! I no longer needed Benadryl.
And, the great lyme treatment solved my insomnia problem, reversed my lyme-induced menopause, and took away every other lyme symptom I had had for 10 years.
So, I would advise you to change doctors especially since you have had no improvement with your current doc over the last 2 years. This is a clear indicator that he does not know enough to help you any further.
If you have never read the Burrascano Lyme Treatment Guidelines, they are here:
I suggest you STUDY this document. It will give you your education on the disease that you have. Here is a quote that backs up your idea that lyme causes TN:
"It is clear that in the great majority of patients, chronic Lyme is a disease affecting predominantly the nervous system." (page 4) Burrascano Guidelines
It is very likely that TN was the first symptom of lyme disease that you experienced.
Lyme gave me a mild bilateral bells palsy (facial drooping), excruciating dental pain, dry mouth, dry eye, neck pain, and TN. I also had various types of neuropathy that affected the rest of my body.
I got the bells palsy and had it for about 3 years, not knowing what it was. This was many years before my lyme diagnosis. After educating myself, I looked back and realized that this was an early lyme symptom. One day, prior to my diagnosis, it left just like it had come. And, here I thought I was just getting older and I needed a facelift! It looked horrible.
Don't know what part of the country you are in or I could possibly give you the names of some top doctors. The doc is the key to getting rid of this horrendous disease. Can't emphasize that enough. Many doctors treat lyme disease, but only a very few know enough to get rid of it for a person.
I had undiagnosed lyme and coinfections for at least 10 years. Still, by going to a doctor who followed the Burrascano protocol, I got well.
It is now over 8 1/2 years since I completed my treatment and I am still symptom free.
Please find a much more knowledgeable doctor. That TN is a killer!
Posts: 9931 | From Maryland | Registered: Dec 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I would not do a second surgery.
TF REALLY knows what she is talking about.
I would seek out a more experienced ILADS educated LLMD for a better treatment that will be direct.
Can't say all I might (just too tired to fully be present) but, as you find a better doctor to treat lyme, et.al., I have some support ideas -- not to be a substitute for direct treatment, though.
support and
you might: explore UPLEDGER INSTITUTE for a safe method of cranial sacral therapy. Never ever let anyone suddenly twist neck or spine. Upledger does not do that. This would not treat lyme but could offer some physical support and help circulation of medicine and support herbs.
Just a thought.
Medical mushroom good for nerve fibers: Lion's Mane, other name of it starts with an "H"
Magnesium might help reduce inflammation and loose likely muscle tightness that could be "mimicking" compression??
But no support is enough to slight on assertively addressing the infection. Just be sure that you have excellent liver & adrenal support along the way.
Avoid ibuprofen as you have (hopefully) been told by doctors, that will cause all blood vessels to constrict. Never good.
And, sadly, acetaminophen can also cause cellular constriction by blocking glutathione in all cells, not just the liver.
CORYDALIS might be a help to relieve pain while you treat. MAGNESIUM, too, of course. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
WHY you need an ILADS "educated" or "minded" Lyme Literate doctor (whether MD or ND, or both) - starting with assessment / evaluation for lyme, OTHER tick-borne diseases, and other chronic stealth infections - and all that goes along for the ride.
Medical "models" explained here, as to differences in the ISDA & ILADS models of assessment & treatment - and exactly why it is so very important to know the differences. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You mentioned a Doug Coil (a kind of rife machine) and said you did not know much about it. Here's more:
[this type is excellent for those with lyme as there is no sudden twisting of the spine or neck - which should never be done with some who deals with lyme]
FIND A THERAPIST trained in UPLEDGER TECHNIQUE (not all trained in cranial-sacral also have the visceral training so do ask first.)
Some who are trained in this (such as a D.O. or P.T.) may be covered by your insurance. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Just one of many reasons to avoid surgery is that steroids are often used. Vital detail:
Topic: Minor surgery and steroids - complications from steroids that were not supposed to be administered. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Some vestibular detail here can help with comfort, too, such as avoid all fluorescent lights, etc.
Topic: TINNITUS: Ringing Between The Ears; Vestibular, Balance, Hearing with compiled links - including HYPERACUSIS -
Posts: 48021 | From Tree House | Registered: Jul 2007
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