Hi everyone. I am new here.
I was officially diagnosed with Chronic Lyme Disease last week by a Lyme doctor I was referred to. They want to go ahead and start treating me for it with antibiotics. I have some worries though.
Does anyone have lyme and Trigeminal/Glossopharyngeal Neuralgia (TN/GPN) and did either antibiotic treatment for Lyme or Microvascular Decompression surgery (MVD) help take away or minimize the nerve pain? I just don't know that I can take the pain anymore and don't know that antibiotics will take away or minimize my pain. I have surgery scheduled in December and if I don't have it, I may have to wait an entire year until I can do the surgery because of my work.
I don't even know if any of it will help as I have had Lyme since 1999 and have never been treated for it. Any input is welcome! Thanks!
Chris
Its not likely Lyme treatment will help 20 years after the fact. In fact "antibiotic treatment" can cause a whole new set of problems. Their really is no such thing as "Chronic Lyme Disease" You are dealing with nerve damage (from a variety of causes) when you have TN.
This article in fact discusses the neurotoxic effect of antibiotic treatment which could actually do more harm than good. There is no way a "Lyme Doctor" is qualified to deal with TN (much less anything else IMO) You are correct to be concerned.
20 years after a true lyme infection is no longer Lyme disease it is a known condition called Post-treatment Lyme Disease Syndrome. What has happened is your immune system has been damaged. This can have some pretty severe effects especially with your inflammatory responses. Whether MVD can help or not is anyone's guess. My first question is what treatment have you had for your TN thus far? There are dozens of possibilities. Has any of the medications had any effect? What else have you tried?
tj1, I had a Western Blot done in 1999 done and it was positive. However, my doctor decided not to treat me. They followed up 6 weeks later with another and it was negative. I have never been the same. My symptoms over the years kept increasing and now I am barely functioning. If I had Lyme positive test that long ago and was never treated, what on earth am I supposed to do? Also, I have tried every drug under the sun for my nerve pain, but I don't tolerate it well. My doctor is an MD and she thinks since I have never had any antibiotics, that maybe we should try.
I have all kinds of neurological issues/pain, but also stomach cramping, electric like jolts, chest pain, that have all started happening in the last year. I am sick and have been to a bajillion doctors and had surgeries. I keep getting conflicting information. I don't know what to do anymore.
If it were me I'd try the ABX. (21 days tops) IF they have an effect that most likely means that they are having a DMARD effect. My next step would be a rheumatologist who can get you on a real DMARD regime. If they don't work Id try a regular DMARD regime. Its the only way you can put the "lyme" to bed
One caution though IF you at any point feel worse or your symptoms get worse. STOP immediately The ABX are neurotoxins. Getting worse could mean more damage.