Since I started minocycline, I have been COMPLETELY wasted mentally; can't sequence tasks, get disoriented, get lost, etc.
This has been going on for weeks! I thought it would come and go, or at least calm down a little bit.
Is this normal? Has anyone else experienced something similar? Thanks all. mazou
Posted by cameronb (Member # 12240) on :
this is a great question. I would love to hear from people who never saw a lessening of herx symptoms over a period of weeks, months.
What can the never-ending herx reaction mean?
Posted by Hoosiers51 (Member # 15759) on :
That is EXACTLY me right now! I have been on Mepron and Zithromax for Babesia. Things started getting bad the second week, and I am now about 6 weeks in and it is slowly getting a little worse.
But, my main complaint is that it doesn't feel like a "Herx"....I was just wiped out completely, no energy, and then the horrible brain fog and memory issues started.
So I am like, "What's going on?" I have asked other people on this site if they think it is a Herx.....there wasn't a strong opinion either way that I can recall.
I guess I just wanted to see crazy-strange symptoms that come and go......but fatigue and brain fog----how not fun is that?
So, I can relate. I'm glad you at least think it is a Herx, because I am even questioning that. They don't sound like anyone else's herxes on this site.
But, like you, mine have not let up. I am kind of worried I will just go off these meds in 4 months and realize I didn't make any improvement. But I sort of think I will. Time will tell.
I wish I had advice to give, but at least I can tell you I am going through the same thing!!!!
What infection are you treating, and what are you taking?
Posted by Hoosiers51 (Member # 15759) on :
Okay, I am leaving my former post up to show how bad my memory is. Yes, you are taking Minocycline. My bad. I knew that.
After re-reading your post..... I do think you are making progress. The disorientation, etc.....I would think you are killing something. Just sorry you have been suffering for so long!
My best advice would be to keep going and follow the advice of your LLMD. But, if months and months go by, and you start to have doubts you will ever see the light at the end of the tunnel, might be time to switch up the meds. Good luck.
Posted by mazou (Member # 15319) on :
Thanks, that makes me feel a lot better.
Posted by ByronSBell 2007 (Member # 11496) on :
been in a constant herx for 2.5 months now on IV's....
Posted by mazou (Member # 15319) on :
Are you serious, Byron?
I don't mind, honestly, as long as something positive is happening in the long run.
Posted by Hoosiers51 (Member # 15759) on :
Mazou, is this your first time being treated with antibiotics? Just curious.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by cameronb: [QB] this is a great question. I would love to hear from people who never saw a lessening of herx symptoms over a period of weeks, months.
What can the never-ending herx reaction mean?
1. My herxing was non-stop for a year.
2. You're killing keets!
Posted by feelfit (Member # 12770) on :
9 months constant herx for me. I have had 2 or 3 days that were fairly good. I was undiagnosed for 15-20 years though, so my bacterial load must be huge.
Doctor says it is die off and it is going to take awhile to start feeling better.
WAITING PATIENTLY, Feelfit
Posted by herxuk (Member # 15873) on :
Three months. I deliberately lower the dose to temp them out. I don't think they can stay in suspended animation forever, their is a need by nature for them to come out, even if they have to face the foe. Nature has the upper hand even for them. 6 wks lower dose , felt no kill, 3 months herx, A bit cat and mouse game .
Posted by mazou (Member # 15319) on :
Hi Hoosiers, yes this is the first long-term antibiotic therapy. Would that be a reason for this effect?
Feelfit, me too. My doctor (LLMD) thinks I have had this for 15+ years. My neuropsych thinks I may have been born with it. So these bugs have been with me for a while.
Herxuk, I love your cat and mouse story.
Thanks, everyone, for your fantastic replies. I don't feel so alone now!
Posted by Hoosiers51 (Member # 15759) on :
I'm not as knowledgable about treatment as a lot of people on this site, so I don't feel too qualified to give advice.
If it were me, I wouldn't start to get too impatient until after 3 or 4 months, especially since this is your first round. And I am not saying at 3 or 4 months you should switch drugs, just that that might be the point that you re-evaluate what is going on with your treatment.
I feel in a way I am just as in the dark as you about the nature of Herxes, because I feel like mine are always atypical.
I do know that some people don't feel the positive effects of the drugs until after going off that drug, so don't get too down on yourself. I know it's hard though....we want results!
You may have to try other drugs before you find the one that really works for you, but I would say that everything you are going through now is normal.
If you are really worried things aren't progressing, you could maybe call your doctor.
Knowing this is your first round might also help others posting here give you better advice, so that's why I asked.
Posted by Lymetoo (Member # 743) on :
PS... At the time of my diagnosis, I'd had Lyme for at least 42 yrs. That was 8 yrs ago.
That would be a huge factor in herxing for an entire year!
Posted by groovy2 (Member # 6304) on :
Hi mazou and All
It is common to herx for a long time- I herxed for one solid year and then off and on the the next 15 months or so -
I sometimes got lost coming home from work- I worked the same place for 3 yrs- 3 miles from home -OucH
It was scary but this has gone away with treatment threw time -
Im perty sure that I have walked around in circles in my room close to 100 miles trying to figure out what I was looking for -
Herxing is a Good thing just No Fun--Jay--
Posted by Boomerang (Member # 7979) on :
I think hubby has been in a herx for months. I keep waiting for the day the clouds will lift and it will all end.
Posted by mazou (Member # 15319) on :
So maybe it has something to do with how long a person has been infected. Something to think about.