I am not (neither is my LLMD or GP) understanding why I cannot stay off antibiotics for more than a couple days.
Most articles/stories/posts on forums and the like seem to report relapsing after a month or a few weeks or even a few months. I cannot go even 3 days without targeting the spirochete form and I fall ill.
Am I the only one? Very puzzled and frustrated...I have been on long term, high dose antibiotics for over a year and a half and every time I think I am getting better, I immediately have to restart medication or I get too ill and mentally slow for work.
Heard of this??
Posted by seibertneurolyme (Member # 6416) on :
2 possibilities immediately come to mind.
First -- have you treated for bartonella or BLO -- if not then definitely check into that.
2nd -- what about Lyme cysts? Here is a link discussing that.
Thanks Bea....that link makes a lot of sense...informative.
Posted by canefan17 (Member # 22149) on :
Mycoplasm??
Posted by sixgoofykids (Member # 11141) on :
I would say coinfections. Typically if it comes back that fast it's not the borrelia. My babesia would come back within three days.
Posted by lymers (Member # 21512) on :
I would suspect a coinfection, particularly bartonella.
Lymers
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by sixgoofykids: I would say coinfections. Typically if it comes back that fast it's not the borrelia. My babesia would come back within three days. [/QB]
I agree with that!
Posted by daisyrlb (Member # 15686) on :
migs, sorry this is happening to you. Can be discouraging.
I wonder, are you exercising per Dr. B's protocol? I did not the first time I was treated for Lyme and company, but after remission, followed by relapse, I did exercise the second time. THAT made the difference for me.
In Dr. B's Guidelines on pages 31-32 it gives the specifics. Dr. B says, "Despite antibiotic treatments patients will not return to normal unless they exercise." OH WOW, THAT'S POWERFUL--WILL NOT!
A member of Lymenet encouraged me to follow the exercise protocol. They had done so, got better and run marathons!
Something happened inside of me that sparked hope and excitement. I could "taste" feeling better.
Eight or nine months of abx later, along with the exercise, and I felt BETTER than back to normal. I still feel great.
I've been off abx and symptom free since March 2009. You can read my story under the Lymenet Success Stories.
daisyrlb - That is a great story. I love to hear people that are cured. I do appreciate the advice and will be re-reading the guidelines momentarily.
Posted by Rumigirl (Member # 15091) on :
In addition, as others have said, it' vitally important that your doctor is considering and treating all the co-infections. And the cyst form of Lyme. Otherwise, you'll never get well. It's all in the guidelines.
Posted by lymebytes (Member # 11830) on :
I can't even get off abx, if I cut back I go into something that feels very herx-like. I wish I could take a break.
Posted by daisyrlb (Member # 15686) on :
I am learning that our intuitions (which I really never took serious) or those "gut feelings" we have--we need to pay attention to.
lymebytes you say, "I wish I could take a break".
That is very interesting, especially since LLMDs have started "pulsing". I am not sure if it is something newer, in the last few years, but on my road to remission, Dr. W in TX used that method on me, more so at the end of my treatment (although neither of us knew it was towards the end of my treatment). But now that I think back, I was having thoughts that I needed to get off ABX and I told him. Dr. W gave me the CD57 blood test that showed him "something" was low and he wanted me to continue ABX, which I did for another couple months.
Pulsing is when you take doses (Dr. W had me on high doses of ABX, then he'd have me off for a few days...then on again.)
[ 01-17-2010, 04:21 PM: Message edited by: daisyrlb ]
Posted by Sick Tick (Member # 23003) on :
I started feeling bad again about 5 days after my Doxy was done, and then again 2 days after the IV Rocephin. My ID said that the Doxy has anti-inflammatory properties and so I felt better on it despite my not being "cured" but he could not explain the issue post Rocephin as it does not have that anti inflammatory effect. Too late for a herx I think since I was on the IV Rocephin for 28 days, and off 2 days when it started.
Here is the interesting part; the time this occurred after Rocephin, it resolved on its own after around 5 days. What a weird disease!
Posted by Haley (Member # 22008) on :
I get ill within a a few days when I go off of the IV Rocephin. I'm sure it is probably co-infections. I agree with what one person said about exercise. I have begun to take exercise very serious and the difference is amazing.
Posted by migs (Member # 16496) on :
I've been really thinking on this one and reading like crazy. So far, I like the cyst theory, as described by LymeMD.
It not only makes sense with my timelines of relapse but also the fact that my head gradually gets hazey until I add in some Tinidazole or Flagyl...regardless of other abx I am on.
It also adds credence to the theory of how Dr. B and Pamela Weintraub cured their infections. Go off all abx...draw out the cysts til you are horribly ill and stealth bomb them with mega high dose Ceftin. Repeat cycle til you've caught them all.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by Sick Tick: Too late for a herx I think since I was on the IV Rocephin for 28 days, and off 2 days when it started.
It's never "too late" or "too early" for a herx! Seriously!
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by Haley: [QB] I get ill within a a few days when I go off of the IV Rocephin. I'm sure it is probably co-infections.
Could be .. could VERY WELL be due to the cyst form rearing its ugly head. I hope you are on a cyst buster too?? or will be on one when you finish the Roc??