Stopping antibiotics... worried about relapse!!!

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Evanston1
Regular Member


Date Joined Jan 2017
Total Posts : 410
   Posted 12/24/2017 10:14 AM (GMT -6)   
I'm stopping all antibiotics (except herbs) to have a wash out period before heading to St George Klinik for treatment in January. I'm really worried about slipping backwards. I keep getting muscle pains in my gluteal muscles again... which is what happened when I first got sick. Very very painful. I'm worried these infections are never going to go away.

WalkingbyFaith
Veteran Member


Date Joined Aug 2017
Total Posts : 2037
   Posted 12/24/2017 10:16 AM (GMT -6)   
I'm sorry, Evanston. I don't really have any advice except to stay on the herbs and keep detoxing and supporting your immune system and organs.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33907
   Posted 12/24/2017 10:37 AM (GMT -6)   
Did you have instructions to stop abx before you go there? (Is it an option to stay on them for a bit longer? - maybe just stop one week before you go?)


Is it the beginning of january you go?
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Evanston1
Regular Member


Date Joined Jan 2017
Total Posts : 410
   Posted 12/24/2017 11:29 AM (GMT -6)   
We leave January 6. I was told to stop about ten days before we leave. Can't do hyperthermia on any of the tetracyclines or rifampin. Plus, I will be starting on IV antibiotics when I arrive so I need to give my body some time to clear out the minocycline and rifampin.

My white cell count recently was super low (2.8). My doctor thinks it's likely from the antibiotics so I wanted to stop the meds sooner rather than later to see if my white count increases before we leave.

I start IVIG infusions when I return from st George. IVIG can further decrease the white cell count so I really need to stop my meds to see if my white count goes up. I need to be starting IVIG at a higher point than where I'm at now. It's always so complicated for all of us!

PeteZa
Veteran Member


Date Joined Jul 2015
Total Posts : 9729
   Posted 12/24/2017 12:19 PM (GMT -6)   
Eat healthy and stay on the herbs.

I hope everything goes perfectly.

Missouri
Regular Member


Date Joined Sep 2017
Total Posts : 397
   Posted 12/24/2017 3:03 PM (GMT -6)   
Interesting you say that. 8 days after starting my first antibiotics break, I had gluteal muscles twitching like crazy all day then that night total crash 102 fever. Strep throat like misery all that night.

I have had lots of twitching everywhere else, but never my glutes until that day a couple weeks ago.

Eat healthy and rest.

Good luck

Sheeks175
Regular Member


Date Joined May 2016
Total Posts : 284
   Posted 12/24/2017 4:27 PM (GMT -6)   
You should be good if it is only for 10 days. You shouldn't slip backwards in that short of a time. I've taken a few 2 week breaks off antibiotics and been fine. Good luck!

Evanston1
Regular Member


Date Joined Jan 2017
Total Posts : 410
   Posted 12/24/2017 6:55 PM (GMT -6)   
Thank you!!!

And my gluteal issues are severe pain... like so bad that I can't walk and need to sit on heating pads.... not twitching.

hdbits
New Member


Date Joined Oct 2016
Total Posts : 19
   Posted 12/26/2017 7:56 AM (GMT -6)   
hi, can i ask, what was your treatment? are you pulsed by metronidazol?

it was only lyme+coinfections?
what was your CD57+?

and what was your symptoms?

Evanston1
Regular Member


Date Joined Jan 2017
Total Posts : 410
   Posted 12/26/2017 9:34 AM (GMT -6)   
Hdbits-

I tested positive for Lyme, Babesia, Bartonella, rickettsial infections, erhlichia, and relapsing tick fever. I've been on almost every antibiotic (not IV) including Flagyl. I'm WAY better now than when I first got sick over a year ago. But main symptoms have been persistent daily fevers, pain in hip joints, pain in gluteal muscles, light sensitivity, no appetite, feeling like I have the flu 24/7, etc. All the usual "fun" stuff smile

Are you having butt pain too?

Psilociraptor
Veteran Member


Date Joined Jul 2016
Total Posts : 1353
   Posted 12/26/2017 10:42 AM (GMT -6)   
Sheeks175 said...
You should be good if it is only for 10 days. You shouldn't slip backwards in that short of a time. I've taken a few 2 week breaks off antibiotics and been fine. Good luck!


I would say this is extremely variable. I have relapsed in as short as a few hours of missing a dose and as long as half a week after going cold turkey. I have never made it several weeks without a terrifying relapse.

OP I personally have not been able to stop after starting. I end up worse. Not just worse than on them, but worse than before I started them. It's like the bugs just get pissed and take revenge and spread to new systems. I'm not saying it's like that for everyone. I don't understand your exact situation and why exactly you need to stop or what herbs you're on. I use herbs exclusively and that's enough to keep it at bay assuming I have some antibacterials in there (ie knotweed, cryptolepis). My gut feeling is that knotweed keeps them pretty well out of my blood stream. I herx hard off of it making me feel it's pretty strong, but never my neuro symptoms making me think that it doesn't extend far into the nervous system. Cryptolepis gives me intense neuroherxes on the other hand. So since stopping cryptolepis I've noticed I relapsed a tad in my neuro symptoms temporarily, but nothing excruciating. And no more vasculitis and spread to new organs so long as I keep the knotweed in there. Just my experience. I guess what I'm saying is, maybe you can't prevent relapse 100% but maybe you can have something as a buffering agent (like knotweed is for me) to keep it from being totally chaotic. If i ever go without any antibacterial though I'm eff you sea kayed

Evanston1
Regular Member


Date Joined Jan 2017
Total Posts : 410
   Posted 12/26/2017 11:10 AM (GMT -6)   
I have to stop because I'm going to treatment center in Germany with a specific protocol that has led to success in a majority of patients. I have to stop my meds 1-2 weeks before I arrive there. That's the only reason I'm stopping....

Rikky1
Veteran Member


Date Joined Jun 2015
Total Posts : 2924
   Posted 12/26/2017 11:22 AM (GMT -6)   
i typically relapse 36-48 hours after stopping abx but sometimes its within 24 hours. Happy happy joy joy. My only hope now is the persister protocol i'm starting in early march which will have dapsone and daraprim. never taken them before so hopeful it'll do something different. if that don't work PZA if that don't work well i'm SOL!

Evanston1
Regular Member


Date Joined Jan 2017
Total Posts : 410
   Posted 12/26/2017 1:49 PM (GMT -6)   
Is PZA pyrzidamide?

Sheeks175
Regular Member


Date Joined May 2016
Total Posts : 284
   Posted 12/26/2017 4:56 PM (GMT -6)   
Psilociraptor said...
Sheeks175 said...
You should be good if it is only for 10 days. You shouldn't slip backwards in that short of a time. I've taken a few 2 week breaks off antibiotics and been fine. Good luck!


I would say this is extremely variable. I have relapsed in as short as a few hours of missing a dose and as long as half a week after going cold turkey. I have never made it several weeks without a terrifying relapse.

OP I personally have not been able to stop after starting. I end up worse. Not just worse than on them, but worse than before I started them. It's like the bugs just get pissed and take revenge and spread to new systems. I'm not saying it's like that for everyone. I don't understand your exact situation and why exactly you need to stop or what herbs you're on. I use herbs exclusively and that's enough to keep it at bay assuming I have some antibacterials in there (ie knotweed, cryptolepis). My gut feeling is that knotweed keeps them pretty well out of my blood stream. I herx hard off of it making me feel it's pretty strong, but never my neuro symptoms making me think that it doesn't extend far into the nervous system. Cryptolepis gives me intense neuroherxes on the other hand. So since stopping cryptolepis I've noticed I relapsed a tad in my neuro symptoms temporarily, but nothing excruciating. And no more vasculitis and spread to new organs so long as I keep the knotweed in there. Just my experience. I guess what I'm saying is, maybe you can't prevent relapse 100% but maybe you can have something as a buffering agent (like knotweed is for me) to keep it from being totally chaotic. If i ever go without any antibacterial though I'm eff you sea kayed


It depends on your symptoms and co-infections and how strong the co-infections are. Babesia and Bart have very fast reproduction cycles. Like 24 hours or so. Lyme is a very slow growing infection. I think it replicates every 4 weeks. Not 100% sure though. This is just what I have heard from LLMD MR.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33907
   Posted 12/26/2017 5:53 PM (GMT -6)   
Sheeks175 said...

It depends on your symptoms and co-infections and how strong the co-infections are. Babesia and Bart have very fast reproduction cycles. Like 24 hours or so. Lyme is a very slow growing infection. I think it replicates every 4 weeks. Not 100% sure though. This is just what I have heard from LLMD MR.


Is it 24 hours - for which one - bart or babs?

I keep seeing differing information.
As in 3- 4 days or a week.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Sheeks175
Regular Member


Date Joined May 2016
Total Posts : 284
   Posted 12/26/2017 7:26 PM (GMT -6)   
Girlie said...
Sheeks175 said...

It depends on your symptoms and co-infections and how strong the co-infections are. Babesia and Bart have very fast reproduction cycles. Like 24 hours or so. Lyme is a very slow growing infection. I think it replicates every 4 weeks. Not 100% sure though. This is just what I have heard from LLMD MR.


Is it 24 hours - for which one - bart or babs?

I keep seeing differing information.
As in 3- 4 days or a week.


/www.youtube.com/watch?v=7wXQfHWRBYI

Start at 57 minutes. He only mentions bart replicates every 24 hrs. He just says babesia grows back quickly, but doesn't specify how quick.

Wisco woman
Regular Member


Date Joined Oct 2017
Total Posts : 67
   Posted 12/27/2017 2:14 PM (GMT -6)   
I am so curious as to how the treatment goes. Please inform us on your condition after the treatment. Best of luck. I wish you 110% healing.

The Sal
Regular Member


Date Joined Feb 2017
Total Posts : 35
   Posted 1/1/2018 2:45 PM (GMT -6)   
Evanston1 said...
I'm stopping all antibiotics (except herbs) to have a wash out period before heading to St George Klinik for treatment in January. I'm really worried about slipping backwards. I keep getting muscle pains in my gluteal muscles again... which is what happened when I first got sick. Very very painful. I'm worried these infections are never going to go away.


I too would love to hear about how you respond to treatment from the St George Klinik. I have also recently looked into going there and would love to hear your first hand experience. I wish you good luck and healing and I hope you find the solution there.
New Topic Post Reply Printable Version
Forum Information
Currently it is Saturday, August 18, 2018 8:38 PM (GMT -6)
There are a total of 2,994,253 posts in 328,114 threads.
View Active Threads


Who's Online
This forum has 161264 registered members. Please welcome our newest member, CatskillsMelanie.
300 Guest(s), 9 Registered Member(s) are currently online.  Details
Wings of Eagles, island time, HaleyBugs07, Stan1961, Jaybee&GG, dbell, OriolCarol, three 5's and a jack, T.S. Eliot