Just wanted to keep you updated with my success so far. I became very ill when I started having the shooting, stabbing pains 10 months ago. I was diagnosed with TN by 2 neurologists, but have also gone from specialist to specialist to figure out why I became so weak, fatigued etc. Over a month ago I tested positive to a Lyme co-infection (Rickettsia which causes Rocky Mountain Fever). After two, 2 week treatments of tetracyclines I have lowered my Tegretol dose from 800mg/s to 300 mg/s per day. I can still feel the ear pain slightly but the shooting pain seems to be gone. I have suspected Lyme and co-infections for a long time but the medical system is not testing, diagnosing or treating this properly. I still have a long road of treatments ahead but it is encouraging.
One thing that I really notice is that if I have sugar, my breakthrough pain is stronger. Bacteria loves sugar and feed and multiply on it so if this is you, you need to get tested.
I am writing this to let all of you know that Lyme disease can be a cause of Trigeminal Neuralgia, ATN, or any neuralgia. Bacteria love to attack the cranial nerves, not to mention all of the body's systems. Lyme disease mimics MS, Chronic Fatigue Syndrome, Fibromyalgia, Parkinsons and so many more. If you have neuralgia and other symptoms or diseases, please get tested, not only for Lyme disease but also for co-infections. My regular doctor said that my tests were negative and it was only when I investigated and talked to a Lyme literate medical doctor did I get tested for the co-infections and found out that an overall negative is not a negative result. Get a copy of your lab test and if you have any double starred bands show as positive, you need to see a Lyme literate medical doctor.
Please feel free to send me an email if you have any questions. Also please watch the film 'Under our Skin' which you can download for free.
Hi: my neurologist tested me for Lyme's day1 I met with her and now 13 months later, they just retested me. Lymes apparently is known to have false negatives and can be tough to pinpoint. Cant comment on the others, but there was a list of items on the blood test
That is so true. Please watch 'Under our Skin' -- it will explain how the regular medical profession is oblivious and denying Lyme treatment. Once you educate yourself you can be your own advocate and take action.
The initial test is the Elisa test and it is useless -- my doctor tested me twice but I have not been well for years and it wasn't until TN struck and rocked my world did I become pro-active. The only way it might show positive is if you know you were bitten and you were tested within 4-6 weeks. The Western blot is better but the CDC standards are ridiculous and once you watch the film and do research you will understand why. If you have one positive double starred band, you have Lyme as they are Lyme specific. I had 2 and 4 were there but not strong enough to be positive. The sicker you are the harder they are to find. Usually after treatments and you are retested, more positive bands are revealed. Get a copy of your results and PM me if you like. Currently there is no definitive test, so only a Lyme literate medical doctor can determine a diagnosis. I was also tested for Rickettsia (positive), Bartonella, Ehrlichia and Anaplasma. They are the main co-infections.
I am doing so much better with the TN pain and the fatigue. It involves treatment (can make you feel worse - my TN did get worse), diet change (eliminate sugar, decrease carbs), detoxing and reduce stress.
Well I have barely begun, but 2 weeks of doxycycline, 2 weeks off, 2 weeks of minocycline (these are antibiotics) and then I go on low dose, pulsating antibiotics as well as olmesarten. This process goes on for years I believe, but you have improvements continuously. Each LLMD will have a different type of treatment plan and no treatment works for everyone. The key is finding a great LLMD and changing your lifestyle. I am also detoxing a lot. When you take the antibiotics, you have herxheimer reactions which make you feel horrible and everyone is different, but for me the fatigue, sleepiness, nausea, muscle twitches, etc became much worse and I also had air hunger which can be scary if you don't know that this will happen. Once you know what to expect and that it will go away, it is fine. Everyone of course is different in the degree of herxing, but detoxing helps to modify the symptoms.
Symptoms of mine with Lyme are, fatigue, weakness, sore muscles, muscle twitches, swollen lymph glands, hair loss, TN, ATN, numbness and tingling in arms, vibrations in body, hives, black spots and squiggles in eyes, night sweats, fever, cold chills. That is what I can remember right now, but everyone is different and it can mimic so many conditions (that have no cure or causes).
You are so right about the things that affect the cranial nerves.
Sinusitis is also a symptom of Lyme's. Inflammation is why detoxing is so important. Most of my symptoms are on my right side and my LLMD said that it has the inflammation and build up of bacteria. You do have a lot of Lyme symptoms. Go to the ILADS website and look at the list of symptoms there. I am on the MDJunction forum which is helpful for information and support. This site has been amazing for emotional support and great for information as well.
If you can get checked for Lyme thru Igenex or Advanced Lab services (new test) you should. Also get checked for co-infections (listed above) because they are actually harder to treat and can be more serious. Make sure you get a copy of the results from your doctor even if they say it is negative. If you have any positive double starred bands, go to a Lyme literate medical doctor. A regular doctor will not treat you thoroughly enough. An Eliza test is useless which is what most doctors will use to test Lyme. Please watch 'Under our Skin' -- download for free.
This is why I posted this -- I want to educate people on Lyme and most of all direct them to better health quality of life if that is what they have. TN is a crazy condition, so if at least that pain can be eliminated it helps to deal with the rest of the symptoms.
It sounds rough for you so I hope the MRI will answer some more questions.
Get copies of your lyme result regardless -- if it is a Western Blot, they are confusing to understand (my doctor had no idea how to interpret it as most don't) but I can help you figure it out.
Glad to hear the Trileptal is working. I wish I would have started on that instead of Tegretol. I do not do well with drugs and it is a brutal one.