My doctor (an internal medicine/infectious disease dr) read my lab results and confirmed that I have Lyme disease. (Labs posted under another topic.) He has been a very good doctor and highly regarded in our area. He has prescribed amoxicillin for one month (3x/day) and then a follow up visit. This does not sound like the right or best course of treatment for the long haul for this disease from what I have read on this website and I still plan on seeing a LLMD.
I think I should start with this treatment until better advised. Any thoughts on this are appreciated. From what I understood, the infection is relatively a new one and I have had symptoms for the last 5-6 months. I am curious if I should expect the herxing?
Posted by anonymiss (Member # 32018) on :
I agree that you should definitely take the antibiotics that were prescribed to you, at least until better advised.
When I started antibiotics, I felt a bit better initially (in retrospect that was probably the narcotic painkillers working) for the first day or so and then BAM! I wound up back at the ER thinking I was having a heart attack or being crushed by a bear or something. I had such terrible shortness of breath and stabbing chest pains, dizziness, light sensitivity and I thought I was going to die.
Well, I didn't die but it's definitely been a slow and painful progression from there. Some days are good enough that I can go out and get things done but most days are pretty miserable.
My initial major symptom, arthritis in my ankles, is now essentially gone aside from some residual swelling and stiffness. I haven't had a night sweat in about a week, which is very exciting! The main symptoms I have now are heachaches, excruciating stabbing pains throughout my body, dizziness, debilitating fatigue, shortness of breath, heart palps, racing heartbeat if I exert myself (and by "exert" I mean get up off the couch, LOL).
I keep having negative ELISA results and I haven't been officially diagnosed with Lyme, yet. For some reason, despite the fact that our state health department recommends ONLY a western blot for late presentations of Lyme (which includes arthritis, such as mine), I have yet to receive a western blot test (because the ELISA that they aren't supposed to be doing keeps coming back negative). BUT, the antibiotics took away my arthritis which for me is pretty convincing evidence of an infectious cause of the arthritis.
Anyway, yes, expect the herxing. With a low dose of amoxiicillin you are probably not going to experience it to the degree of someone who is on high dose intravenous antibiotics, but you will almost certainly experience it. You might even feel better for a day or two first.
There are different things you can try to detox if the herxing gets to be too much, but I am a "ride it out" kind of gal so I don't know much about any of that.
Posted by sixgoofykids (Member # 11141) on :
I would take the abx. With amoxy, HIGH doses are normally used. I would make the appt with an LLMD so that you can get thorough treatment in case one month isn't enough. You may need to be evaluated for coinfections, etc.
Posted by racer (Member # 30438) on :
My understanding is that doxycyline is the most effective antibiotic, especially for early infections. If it were me, I'd ask my doctor for a doxycycline prescription.
racer
Posted by Lymetoo (Member # 743) on :
Racer is right.
yes, you will herx if the dosage is high enough to actually kill spirochetes
Posted by Arkie-hinny (Member # 26546) on :
I say take it now to start kicking it's butt. Heck, I herxed on the 'standard' dose of 200 mg Doxy a day. I was early stage, too. That's when I knew I really had it. Good luck with this and I'm glad you came to Lymenet because they saved my life.
Posted by Jamers (Member # 28016) on :
I agree with the Doxy. Thats what most start out with, Doxy at the double dose. Which is 200mg/2x day, i think. I like doxy it made me feel better initially, my herx wasn't too bad on that one and I've been sick for a couple of years.
Posted by Dmc2282 (Member # 32453) on :
Thank you all for your input. I am allergic to a lot of drugs and I believe that is why he prescribed the Amox over the Doxy since I have taken it before. I am going to follow up with a LLMD so I hope there is no harm for now starting with the Amox. Keep your comments coming. I am so grateful for this website. You all have helped me so much.
Posted by payne (Member # 26248) on :
yes, herxing is in your future, but,protect your gut, amoxicillin may have brought on C-diff (c.difficile colitis) in me- my lack of good probiotics and not eating meals with antibiotics may have brought my stomach to a stand still, I am stool testing now, and will update in a post later... treating chronic lyme is a tight rope, you REALLY have to be strick and focased on your own being, I jumped around and got a feel of my own bodies needs, listen to your body...
slow and easy wins this race. best wishes there is a wealth of info here for your recovery.
Posted by lou (Member # 81) on :
The reason doxy is normally used at the beginning of treatment is because it can hit ehrlichia too, in case the tick gave you more than one germ. I doubt that your doctor did any coinfection testing, right?
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by lou: The reason doxy is normally used at the beginning of treatment is because it can hit ehrlichia too, in case the tick gave you more than one germ. I doubt that your doctor did any coinfection testing, right?
- Take the amoxy if that is all you have. Don't WAIT for anything.
Posted by t9im (Member # 25489) on :
I believe amoxy is a good substitute for doxy and MDs normally prescibe it over doxy in the summer due to the sun burn side effect. It attacks the spirochete as well as doxy but as pointed out doxy is the drug for erlichosis.
Unfortunately neither address the cyst form of the disease and both actually promote forming the cysts. The IDSA and its guidelines don't believe in the cyst form so to obtain a cyst buster you will eventually need to see a lyme literate MD.
Since your from NJ you need to determine if there are other co infections. A quest pannel can help but a negative for Babs or Bart may not mean you don't have them.
Posted by Dmc2282 (Member # 32453) on :
Thanks everyone. I have an appointment with a LLMD (7/15/11) and they told me to take the Amox for now and they will test for co-infections after they get a complete history. Not sure what the cyst form of the disease is but the LLMD should know. I am looking forward to a better future!
Posted by Dmc2282 (Member # 32453) on :
I just did a search in the Lyme Disease Association doctor referral system just out of curiosity and guess what? My doctor, an ID was given as one of the doctors! We didn't discuss co-infection testing so I am not sure what to think. Any thoughts?