Quote:
Originally Posted by mytea
pg,
So I started posting before I read the complete thread and realized that you are still posting on this thread so you will likely get ALL of my postings! Anyway, I wanted to mention that Lyme often needs to be treated with multiple antibiotics for effective treatment. Doxy alone is not going to do it, especially at doses below 400mg a day. I wanted to also mention that not everyone with Lyme experiences herx reactions so do not let that lead you away from Lyme. Have you had any thyroid testing? Some people with Lyme also mention thyroid overactivity or inactivity...can't remember which at the moment. Lyme is a very strange disease and everyone presents differently to some extent. If your symptoms do not look exactly like those listed on the 'mayo clinic' website do not rule it out all together.
I know quite a bit about Lyme and if you can get to an LLMD who is going to treat you with more than just Doxy I would look into it. Lyme symptoms can also come and go...for instance I have a girlfriend who had all of her joints flare-up and she never did find out what was causing all of her discomfort at the time. Maybe 6 months into the mystery the joint pains just went away and she hasn't had any since. She does have Lyme, but no joint pain since the first flare.
Anyway, just my two cents. I am not a physician, I just wanted to give my input. Thank you for listening!
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Hi thanks for the reply and input. Lyme (or atleast some infection likemycoplasma, EBV, etc.) has thought t be the cause of my issues all along. Regarding lyme, a lot of my symptoms fit, I live in one of the highest lyme areas in the country, have had ticks on me in the past, hike, bike, play soccer, etc. had the borderline tests, and do feel like I have responded somewhat to the doxy treatment I got.
I have seen 3 LLMD's here in MA. and several ID docs. I have studied a great deal and belong to several lyme support groups. One doc wanted me on mepron and azithromyacin (thought I may have a touch of babesia even though 3 tests have cme back negative and I dont have fevers or night sweats, or elevated liver values, the hallmarks of babesia) other doc wanted me on baxian and plaquenil or high dose tetracycline. I did not want to do the plaquenil/biaxin due to side effects, so tried the tetra and at two weeks felt too horrible stomachwise and switched to just 200mg doxy a day (what my ID pcp wanted me on). Did a month of that and actually felt pretty bad on it. It was only till a month after being off it that I started to notice the tingle I got on my back was gone, the muscle tightness feeling I had was a little less, fatigue was down (now at the gym 4-5x a week) and my hr/bp jumps (i.e., POTS) was a little better.
With that said I feel no where near 100%, but my doc insists that the full effects of the doxy, as far as symptoms go, will not be shown til 3 months off. If I start to regress at all he wants to put me on IV, if I stay where I am at now he wants to try a round of smething different, or if I continue to improve he wants to just stay where I am at.
Not sure what to do... I have a stockpile of biotics, and the means to whatever treatment I want, I am just more hesitant about taking anything. I know you said doxy for only a month doesnt work (I have read this too), but it must work sometimes, I am hoping that is the case for me, if not I'll be back on something.
One last thing, thorughout all of this I have had my immune system markers tested multiple times, including the CD-57 test and they have always been perfect which as I understand it usually isnt the case in someone with lyme or atleast "chronic lyme". My CD-57 was actually 238, most people with chronic lyme come in under 50 and closer to 20... so that kind of confuses me, unless I just have a robust immune system that is capable of fighting on its own.