major setback, major herx - Lyme Disease Message Board

sleeperwoken · 02-08-2005, 07:50 AM

I am so disappointed!!! Ugh, I just have to tell you what happened to me. I went to the doc about two weeks ago and she dropped my dose down a little bit--doxy 600mg, plaquenil 200mg, zithro down to 250mg from 500mg. Doesn't sound like a big deal right? I can't believe what happened to me!!! So many of my symptoms that were gone came back and I had trouble with my hands again, trouble with my vision and neurological problems.

Of course, being the way I am, I had to go into denial for two weeks and just be like, "this is NOT happening." I did that because I felt so happy that she dropped my dose, I was thinking I was doing so well. HA! no way.

Finally, I called my doctor and said this is not working out I need to bump back up to my original dose. Then what happened? Major hellheimer, er I mean herxheimer. Massive pain, no sleep, the whole ball of wax.

I am so mad! AAAAAAAAAAAAAAAAAARgh!! Just had to vent. Thanks all for listening. Guess I'm going to be taking massive meds for a long, long time. Only you all really understand. Thank God for you.

cjFTWORTH · 02-08-2005, 07:55 AM

sw, I have hesitated replying. Because I really don't know what to say, except that I truly am so sorry. I know you've said you had a sense that in a year's time you'd be on the way to health.
Try to fight discouragment. Who knows what this is about. cj

laurie864bla · 02-08-2005, 08:03 AM

Hey sleeper-

So sorry to hear. Mark and you are riding in the same boat and he is miserable too. I think you both are in for a long haul unfortunately. This disease sucks so bad I want to kill it with my bare hands!! Too bad we can't--THAT we could do, right? No problem with strength if we could get just one shot to choke it to death. I hear ya on the venting--you read my posts and replied about my venting. I know part of it was him getting so sick again and lashing out. but I still think they are being a pain and deserved it. How are you coping today? Feeling any better? I sure hope so. Hang in there, I know you guys will feel better soon. Mark is at school today so here's hopin for all of you. Be well.

outinthe_woods · 02-08-2005, 08:40 AM

Yes, we DO know how you feel, sleeperwoken! I'm so sorry, but my experience has been that every time I've gotten "stabilized" and am looking forward to getting off or at least comfortably decreasing my meds for a while, WHAMMO! those bin Ladens come out wreak havoc again. For me, I try hard to just "expect" the herx with a lower dose and try also to be thankful that even tho the doses are massive and who knows the side effects of prolonged use, they do work....keep the faith and somehow you will find a place where you can "accept"....and maybe eventually, it really will work out!