posted
I'm new to this board. Hi Everyone! I'm glad you are here.
I have a dd who has been diagnosed with Lyme disease by Dr. J. Her symptoms are mainly neuropsychiatric. She has been under his care for 10 weeks after being undiagnosed for 5 years. She also has autoimmune issues (likely from untreated LD)and gets treatment for that from an immunologist.
After much reading about LD, I came to realize that I too, had a myriad of symptoms that could be attributed to LD. After speaking with my dd's immunologist about it, he agreed to order Igenex testing on me.
Similarly to my dd, my tests were ambiguous. I had IND bands 41 for both IgM and IgG, positive 31 for both, and IND 45 for one of them, can't remember which right now.
Based on my symptoms he started me on 100mg of Doxycycline and I came home and made an apt. with a LLMD, which I have not seen yet. (next week)
I read Dr. Burrascano's treatment guidelines and realized the dose was too low and the immunologist said if I did okay for two weeks, he'd raise it. Meanwhile, I've hadn't had a lot of change...maybe slightly worse, but no big deal.
But last night I decided on my own, to take an Augmentin that was left over from an old prescription of my dd's. I took one last night and one this morning. I woke this morning to pain. It had only been about 12 hours since I took the first Augmentin. Can you begin to herx that quickly? I feel like I was run over by a train. Every muscle and joint in my body aches like I have influenza. (even the ribs on my back hurt)
My dd herxes significantly but we see a pattern. She takes Tindamax on week-ends and then the following two days AFTER the Tindamax days, she gets a Lyme rash (usually, after a hot shower with epsom salts) and her neuropsychiatric symptoms worsen. She's been in a pretty difficult herx now for 6 weeks that worsens after the Tindamax, but isn't good the rest of the days either. (Someone tell me she'll come out of this, soon?)
I think I just realized that I know the answer to this question, since DR. J told me not to give the second dose of Tindamax if she herxes too badly the first day. (so I guess you can herx that quickly) But is that common?
I feel like it is a good sign that I am on the right track. My major symptoms have been heel pain, short term memory loss, broken thermostat (can't get warm at night), needle-like pains, numbness in my toes, and most recently joint and muscle pain. (mostly ankles, elbows, and beginning to feel knees, until today when EVERYTHING hurts, esp. my hands, in which I can feel every joint in them.) It's been a year and a half since I first noticed symptoms.
I also just want to say hello, tell you a bit of our story, and tell you all I am glad you are here. It has been other patients with LD that have helped me so far to figure out my daughter's illness and my own. I'm looking forward to participating in this larger forum.
Posts: 41 | From Somewhere over the rainbow | Registered: Apr 2011
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posted
Hi, MoMaine it is Chodnett. That happened to everyone in my family and we were not on LYME track yet. But when thinking about it now it was def. a herx LLMD says. and Now I know I have LYME it all makes sense.
Posts: 4 | From dfw | Registered: Oct 2010
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posted
Hi Chodnett. Glad to see you here! I guess I'm not going to take any more meds on my own, for now at least. I'll wait and see if the immunologist increases the Doxy on Monday and I see a LLMD on Wednesday.
As the day went on today, the pain worsened. There is like NO part of my body that does not hurt right now. Is there any drawback to taking Aleve? I've lived on it pretty much for the last year and a half. It was the only way I could walk, my heels were so sore. (I had 3 cortisone shots in them and was told surgery was the next step.) Oddly, my heels felt better today, or maybe its just that everything else hurts so much that I can't feel my heels.
Posts: 41 | From Somewhere over the rainbow | Registered: Apr 2011
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posted
you will not believe the things you never thought could ever be lyme related heal on Lyme treatment. you will get better:))
Posts: 4 | From dfw | Registered: Oct 2010
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After speaking with my dd's immunologist about it, he agreed to order Igenex testing on me. 
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