Quote:
Originally Posted by madisongrrl
Your doctor is undereducated about Lyme/co-infections causing neuropathy, which is unfortunate and typical. Even conservative medical institutions list neuropathy as a symptom caused by Lyme.
Types of Peripheral Neuropathy - Inflammatory - Lyme Disease
There are basically 3 different hypothesises as to the mechanism by which this happens: 1. direct assault of spirochetes on the nerve, 2. immune-mediated damage to the nerve by the host's own immune system, and 3. antibodies that impact small vessels feed the peripheral nerve. My guess is that damage happens from the combination of the above.
There might be a worsening of symptoms, but you should eventually get some small improvements (or at least I did). If Lyme/co-infections are indeed the cause your symptoms, a few weeks of doxy probably won't be the cure. You will have to find a doctor who is a LLMD or some clinician that is Lyme educated. I'm happy that your regular doctor at least is giving you something.
I've been meaning to post another update, but my job has been working me to death this summer to the tune of 60-70 hours per week. One year ago I could barely work 40 hours a week and I was pretty sure I was going to stop working entirely. What a difference a year can make.
I've done 1 year of oral antibiotics and I've seen many improvements. However, my improvements have recently plateaued. I took another Lyme test (iSpot) one year later and it is still positive. I still have paresthesias all over my body (less than 1 year ago), I still have some burning skin (it's much less now), I still have heat intolerance (it's better than it used to be), I still have facial and throat pain, and I still have disequilibrium. My hyperacusis and ear ringing have not come back, which I'm so grateful for. I still have bouts of fatigue, but I'm stronger than I was last year.
I've made a difficult and expensive decision to get a PICC line and try IV antibiotics. There are many risks and no guarantees by taking this route of action, but this is the only approach that got some Lyme patients well. I'm only 40 and I have a lot of life ahead of me, so I feel that I have to give this a shot. |
A PICC line and IV Rocephin were the only abx that knocked out my seizures and gave me most of my memory back. I was so ill before this and no oral abx or combo was keeping my symptoms down. After, I believe, 6 weeks of this, I was substantially better. This was decades ago and sadly, not many docs will script this nor insurance pay for. These tic born illnesses are being swept under the rug and people are suffering terribly and going to hosts of doctors to treat various symptoms yet never getting better. Neuropathy is one of the primary symptoms I hear about and always tell people to get a test for all the tick born illnesses.
I wish you well with the IV and line. ...don't worry about the risks....I know tons of people who used them with no problem. Glad you are able to work...that is terrific.
D.