was anyone's TN caused by an undetected Lyme disease? and does anyone know if the plan for treatment is different for this?(if Lyme is already stage 4 and going to be sticking around)?
I have TN/ATN which my LLMD feels is because of a lyme co-infection.
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.
Wishing you pain free day!
Tweety,
This is very interesting. I was tested many times for Lyme's and it always came back negative. I finally learned about and went to a Lyme literate doctor (by this time it had been almost 2 years since my tick bites and symptoms) and I came back positive for it and 2 co-infections. I did not have TN at the time. My TN started about a year after my intramuscular antibiotic rounds were done. That was also around the time that I developed restless leg syndrome (RLS). I am definitely going to look into this more. Thank you for the insight.
Yes any GP can check for these (in Canada anyway) but there tests will not be as accurate as IGENEX. Steroids have a negative impact on Lyme's and can make things worse. The CDC standards make it almost impossible to have a positive Lyme result. Watch ' Under our Skin' which will explain why. Get copies of your Western blot (Elisa test, which most physicians use, is useless). Any positive double starred bands on the western blot done at Igenex (mail you a kit) would be a positive diagnosis according to Lyme Literate medical doctors.
We have a brand-new member this evening who has also been dealing with Lyme Disease. Feel free to contact Marc, from the members' page...
Regards, Red
My spinal tap was negative as well but when my blood work was sent to IGENEX I came out positive.
Hi ihold -- Did you treat the Lyme at all? I am also on the wait list with Dr. Kaufmann for MVD, but due to the ATN he said the chances of success is less than 50%. I am doing so much better from the antibiotics and treating the Lyme that I hope that surgery won't be a road I will have to go down. I would be very interested to talk more with you. I do not know very many people who tested positive with Lyme and have TN/ATN.
I have long suspected I have Lyme disease along with TN, but when the rash s appeared I did not have insurance. From our local lyme disease support group, I've been told there is no doubt that I have it. When I finally had a job with insurance I hadthe Elisa test done, this was about two years after the rash and it was negative. I asked my doctor to do the second test (meaning the western blot, but I couldn't remeber the name) and she did a Elisa test again which was negative. Even though I showed her pictures of my rash and told her of all the symptoms I had, she did not pursuit it further and I just presumed I didn't have it. Years later of still feeling crummy I developed TN symptoms, did the meds routine for a year or more then had a MVD which seemed to help, it was summer and the pain is always less in the summer, come winter some of the symtoms returned and now two years later I have intense ear pain along with the pain in my upper molars, eye, cheek and the "writing down the side of your nose with a pencil repeatedly". Just saw my Neuro and she said yes it could be connected, but still no testing...I am again without insurance. Increse in TN meds Neurontin (gabapentin) from 900 mg to 1800 mg. The one specialist in town who treats Lyme disease is horribly expensive...like over $600 for the initial visit and lyme tests. I'm stuck just treating the symptoms. Tomorrow I'm going to my support group (my 1st time, I've just had multiple talks and meetings with the leaders), so maybe I'll learn more, what tests to ask for and have my neuro order them. Any suggestions from people who have gone through both or one?
ihold said:
My spinal tap was negative as well but when my blood work was sent to IGENEX I came out positive.
I also had the same experience: positive ELISA & Western Blot, negative lumbar puncture. But based on the negative CSF, was denied access to IV-antibiotics for 3 months. Which was just long enough to develop TN.
The test for Lyme in the CSF has a shockingly high false negative rate. And if you are on oral antibiotics at the time (as I was) you’re all but guaranteed to get a “negative.” Add the arrogance of some neurologists (6 in my case) and you’re in medical quicksand. Fortunately there are a handful of clinicians capable of independent thought. Follow your intuition. It’s your body and your life. Good luck to you!!
Tweety, Yes, I was treated for the Lyme. I took oral antibiotics for a few months and then had to give myself intramuscular (IM) injections of antibiotics for another few months. I believe that it was almost a year total that I was on antibiotics. The kicker is that I was on and off of steroids the entire time for my headaches and as you mentioned, that just makes everything worse. The joint pains were so bad that I had to use a cane to help me walk and I would crawl on my hands up the stairs in my house.
KG: It really is all very expensive with insurance, I cannot imagine without. The Lyme doctor I was seeing did not take insurance and my first visit with bloodwork cost about $800. Then I had to fight with my insurance for them to pay for the antibiotics. It’s horrible that getting a diagnosis is so hard and even harder for anyone to afford the process.
Marc: Yes I was on antibiotics when they did the tap and it didn’t make sense that they would think they’d find something in there at the same time. I also had to do the neurologist game. No one had an answer yet they didn’t want to listen to any suggestions. It’s ridiculous. Before the TN kicked in I started having issues with too much spinal fluid. I’ve always thought that the Lyme’s had something to do with it but none of the Drs would ever address my concern. I didn’t have many of the usual causes for pseudotumor cerebri, so that made think the culprit was Lyme’s and/or all the fun co-infections. Maybe someday I’ll know for sure.
Tweety: One last thing, my NS decided to do the MVD even though I have TN/ATN. I had it done Nov 5 and so far so good. I would say my pain is 90% gone. He has not taken me off of Tegretol 800mg yet (Flexeril on the side as needed) but he will start having me taper it down when I see him in Jan. I’ll know for sure how well I am once I’m off the meds. But my case has been successful so far. I hope you are able to find a resolution.
Now if I could only get rid of the spring, fall and winter joint pains…but that’s asking for too much. LoL
I am so thankful that people are speaking as I have felt so alone on this site when it came to Lyme. Everyone has been so amazing on here for TN and I can only hope that us talking about Lyme can help other people who are suffering and who are on meds that could otherwise be treated for Lyme and prevent other problems from arising.
glad this was of help to some.i apparently have had lyme for quite sometime and develeoped TN about 4 months ago,which prompted the lyme test.am on meds for 3 weeks for lyme and a few anti seizure meds for the TN,and then neurosurgeon says if no relief or too many side effects,surgery.my mri showed vascular structure.i had a lot of questions about the Lyme because they diagnosed me with fybromylagia 4 years ago,and am wondering if i had Lyme all that time since both present with similar symptoms.
It's sometimes difficult to get a definitive diagnosis of Lyme, Snipz. And the symptoms have enough overlap with those of Fibromyalgia that the confusion is understandable when it occurs. Fibromyalgia is also believed to be an auto-immune disorder, as I recall. Be sure to give the anti-seizure meds time to build up in your blood stream, before you think seriously of surgical alternatives. You might also be tried on TCA meds which have a cross-action on neuropathic pain. And if surgery is truely needed, then remember that MVD is the gold standard of practice, and Gamma Knife has a 50% cumulative recurrence rate within 3 years after the procedure is done.
I am feeling desparet for a diagnosis, am almost willing to put the huge bill of $800 on my VISA to find out if I have chronic Lyme, as it was in 2006 when my rash and symtoms appeared. It's alway a draw as to who I want or need to see, I saw my neurologist a couple of weeks ago for increasing ear and facial pain and difficulty swallowing at times, (I have a goiter also, so need to have it rechecked as it has been 4 yrs) and had my TN meds increased, she wanted to inject Botox behing my ear, but $600 is alot, so she said she would try to find out if I qualified for a 50% discount, but who knows how long that will take. I only work one day a week and just got a second job that is one day every three weeks, so I am so broke, am just paying off bills for a fx foot, should have another xray at the end of the month, but that is $100 plus, but another piece of the bone snapped off while wearing the boot splint. Geez, who to pay, go to, It's so hard without insurance or good income (which I had before TN started, buyt I'll probably never get it back. My mind is so muddled with drugs. OMG I just lost train of thought while holding my face. Just as well, I'm rambling. Sorry guys.
I have lyme disease ( in remission). I got TN while I had lyme, but my TN was caused by a head injury. HOwever, I fully believe that alot of my complications may just be because of lyme!
I was diagnosed with Lyme's Disease approximately a year before my TN symptoms first occurred. I have often wondered/thought that the TN was due to the Lyme's Disease being undiagnosed for some time (they think). I had severe symptoms - my thyroid was ruined and the doctor's could not 100% explain why and after they radiated what was left of my thyroid the symptoms did not disappear - so they ran a lot of additional tests, and I came back positive for Lyme's Disease. They figure I was in the latter Stage 2 or early Stage 3 of Lyme's Disease and prepared me for anticipating some long term problems, particularly some level of nerve damage. Who would have thought it would lead to TN? I have Horner's Syndrome in my right eye - where your eye lids go partially paralized (as well as other problems) - which started before the TN did... many, many tests later, including MRIs, CAT scans, and x-rays ruled out tumors, blockage, etc. - but now I have what looks like one limp eye and one bulging eye... and then the TN started...
Angie2: has your symptoms improved at all? I just recently was diagnosed with Lyme’s after countless MRI’s, spinal tap, dr’s etc. My neuro ordered bloodwork (was drawn 2 days before my LP) and came back as positive for Lyme’s. Was a complete shock to me. I suffer from right ear pain which I believe started about 2-3 months after I believe I developed Lyme’s. I was bit by a deer tick, panicked and tried to remove it, but the head was left and had to have outpatient clinic remove it. They never gave me any antibiotics, just told me to monitor to see if I had any symptoms develop. A few months later, started to develop inner ear pain which I simply believed was an ear infection. This then led to months of dr’s visits to figure out what was wrong with me, then eventually tested positive for Lyme’s after they thought I had MS.
HI, sorry for the delay, I haven’t been on the computer much lately.
I was feeling better for a little while, but still not back to normal. I finally have gone to a naturopath doctor who does Zyto scans and there is a lot of bacteria in my body. Without missing a beat and looking at my sheet, he asked me if I’ve had Lymes… says the amount of bacteria in my body states that I still have it – maybe dormant – but it’s still wreaking havoc on my body. So now I am trying a diet for 2 months with natural tinctures and capsules of herbs, etc. When I go back I’ll get another Zyto scan. My face is up/down all the time. I live in upstate NYS and it’s been one of those winters where its either freezing cold or damp, so I haven’t done well with the TN. Warmth is better for me.
Ask me in May how I’m feeling and I’ll give you an update.
Angie
Here it is 2024 and thought I would update my post. I did eventually go to a naturopathic doctor that specialized in Lyme disease and found with the western blot test that I was positive for Lyme disease. Took antibiotics for a year along with other supportive medication for Lyme disease and am so thankful that I did. I don’t know for sure if there is a connection of Lyme disease and TN, but I can say that I had both.