I'm in the middle of treatment. I did 2 months of mostly doxy 400mg daily. Now I've taken about a 2 week's break.
I didn't notice any improvment as far as with my neurological problems.
Now I'm supposed to start on a 2nd cycle and I'm not liking the Protocol: Bactrim, + Ripafim + Minocyclin!!
First, I've read horrible stories about Bactrim (a doubled med.). Second, I don't know why Bactrim was chosen. I supposed for co-infections but I only came out positive for mycoplasma and I think Doxy can also be used for that.
2nd-I know I freak with minocyclin because I was on that shortly for the first cycle and had to change to Doxy.
3rd-I'm not so comfortable with taking all these meds at once. I've had read a lot about the drug interaction possibilities of these and I'm not sure the risk is worth it.
I'm considering going back to Doxy again for a little longer and trying to achieve the 400 mg. If that doesn't help then I'd try something else.
Has anyone started doxy on lower dosages (100mg daily for the first few days) of Doxy and slowly worked up? I'm not wanting to hit it wit 400mg at once.
Posted by Lymetoo (Member # 743) on :
Sure, you can work your way up.
Bactrim would help get rid of babesia. Most every chronic Lyme patient has babesia.
Mino is pretty hard .. made me dizzy.
Rifampin .. that's a whole other story. I'd be more afraid of it than Bactrim.
Make sure you take tons of probiotics and watch your diet!
Posted by RC1 (Member # 31923) on :
My LLMD had me do 1/2 a dose of Mino to start for the first week. That is a pretty intense protocol to start with, when you have only done doxy. I would start the Mino, add the Bactrim, see how you do, then add the Rifampin. I wouldn't start them all at once because you need to make sure they all agree with you. It sounds like a Bartonella protocol to me. Do you have Bart symptoms?
Posted by RC1 (Member # 31923) on :
I just reread your post and you said that you had a lot of neuro symptoms. My guess is your LLMD is thinking Bart because of the neuro stuff.
Posted by fred0 (Member # 37371) on :
RC1-yeah, maybe you're right. Just funny, if that's the case, that my LLMD never discussed anything concerning Bart with me. Only Myco has been talked about which showed up on a test as well but didn't really show much detail. I don't know. I would want to know more concret when I start on such a protocol especially when I also know that Mino just knocks me off my feet. I'm reading some pretty negative stuff as well about Bactrium.
Posted by RC1 (Member # 31923) on :
I think the negative stuff is mostly about the herxing it can cause. I am on it now and have been for a number of months, it hasn't given me any trouble.
Posted by Lymetoo (Member # 743) on :
Right .. Bactrim is a very good drug. You will herx. You need an LLMD who discusses things with you!
Posted by lax mom (Member # 38743) on :
I was on Bactrim for 7 months for Bart. My LLMD Rx'd the liquid form so that I could slowly wean up to the full dose.
I had moderate herxing everytime I increased the dose, but it was manageable.
Posted by fred0 (Member # 37371) on :
Ok, maybe that's possible with Bactrium.
Those others meds combined with that I think would knock me out. Especially Mino. First day I took it I was at some social function and I broke out in a severe sweat till my t-shirt was completely drenched like I had just played one-on-one basketball. The neuro stuff was severe as well. Really hard for me to tell if something is somewhat of a herx effect or just a bad reaction to a med. that doesn't sit well with me. I'd rather be cautious of the meds I pop down since I don't know.
I guess I liked Doxy because I could still halfway function (survival) without totally freaking out mentally and ending up hiding at home. When the neuro stuff flares out of control it's a different story. I'm also at the moment on Lyrica for GAD which itself is a bit of a controversy med..
I have some important musical appointments and opportunities coming up that I'd like to keep. Plus my Dad's coming over for a 3 week visit for Christmas which only happens about once a year. I know though this is my treatment and you're not 'supposed' to always feel that great or functional. I just think that if I end up not able to work and stuck at home all day it would really down spiral into depression or whatever worse.
On 400 Doxy I'm able to still work part time and meet up with people for little social things.
Anyways, the Dr. only had me about 1 1/2 months on Doxy before I took a break.? I think that's kind of short for being so late diagnosed but that was the first cycle specifically in order to hit the Lyme. Next cycle (2 months) appears to focus on the co-infections (Bactrim,etc.).
My plan was to get back on Doxy for a few more months, see what happens, then eventually change to the other meds (Bactrium, etc.) if necessary later.
Posted by dbpei (Member # 33574) on :
From what I understand, taking doxy alone will cause the bacteria to hide into cyst form. You need to take something else to not let the cysts win.
Below is a very good website that explains the different combinations of ABX and what they target. You can always start on very small doses and work your way up... good luck with this!
Thanks for the link dbpei. It was interesting. I've read that about doxy but I was only on it not even 2 months so I might try it just a little longer and then consider if I should try something else as well.
Funny but my Gut seems to do much better when on Doxy. I thought the reverse would happen when starting abx since my Gut was really in bad shape at the start.
Anyways, we'll see what happens. I'm kinda ending up on my own here it looks like, as far as treatment goes. That's a scary thought.