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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.
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wow, thats great to hear youve made such an improvements, even if its not complete yet being able to go from barely working 40 hours to almost double is excellent! Youve come a long way
Please do take care not to over work yourself though, its easy to do!
I can totally understand your decision to push to get back to 100% though by using the PICC and IV, its a brave move but im sure youve calculated the risks and it is somthing that i think i would consider myself if i were in your position
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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.
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yeah, this is what i am reading from all the material, that i need to get a proper LLMD. Im going to see how it goes with this round of doxy and go from there.
Unfortunately my symptoms have continued to be worsen to some extent, today that my whole left leg was feeling very strange, kind of a mixture between cold and tingly! quite weird. I have noticed something interesting though, in that my fingertips, specifically on the areas where i have allodynia on them have dried out, so something definitely seems to be happening on the right areas at least!
Also, you mentioned hypercausis and thats something i didnt know could be a symptom, that was actually one of the first symptoms i had several years ago, but i would never have considered linking these things together. very interesting!
did you have any sort of time frame between when you started treatment to when you started to feel better?