If pulsing, Does anyone feel better when ON antibiotics

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njfillet
Regular Member


Date Joined Aug 2016
Total Posts : 169
   Posted 2/15/2018 5:13 PM (GMT -6)   
I tend to feel somewhat better when on, even though I have slight nausea and more exhaustion. But it seems like as soon as my break comes, things go berserk. Pain, crushing headaches, etc. I see a lot of posts about people feeling bad when taking abx, or herxing, but it seems like I am the opposite.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32695
   Posted 2/15/2018 5:19 PM (GMT -6)   
I have read that Dr. J's patients often feel better on the abx than off them.. and when they're on their weeks off...they can't wait to get back on them again.

I have no distinct pattern...which sucks.

I think what it means is when you're 'ON' them, the antibiotics are taking care of the bugs...then when you're off them, your immune system is supposed to kick in and take over.

Sounds like your immune system isn't up to the task yet.

How long after you stop abx do the symptoms come on? Are you getting a few good days?
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

njfillet
Regular Member


Date Joined Aug 2016
Total Posts : 169
   Posted 2/15/2018 5:42 PM (GMT -6)   
Girlie I think I am similar to you...I still havent developed a distinct pattern, except for with the headaches. I tend to write everything down, which is very difficult to go back and analyze, but I do notice that I write less, and tend to say "Not a bad day overall" more so during the weeks that I'm on. When I look at the weeks off, the papers are filled with writing of symptoms ranging from psychological to severe cognitive dysfunction, and pain.

For the most part, my weeks on mostly say "exhaustion, less pain overall, clear headed, etc."

My most recent cycle, I notice that my second of 3 weeks ON, I had one decent day (afternoon mostly) and another so-so day, which means not terrible overall, and several days where I note "less pain overall".

Post Edited (njfillet) : 2/15/2018 4:47:26 PM (GMT-7)


Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32695
   Posted 2/15/2018 5:44 PM (GMT -6)   
njfillet said...
Girlie I think I am similar to you...I still havent developed a distinct pattern, except for with the headaches. I tend to write everything down, which is very difficult to go back and analyze, but I do notice that I write less, and tend to say "Not a bad day overall" more so during the weeks that I'm on. When I look at the weeks off, the papers are filled with writing of symptoms ranging from psychological to severe cognitive dysfunction, and pain.

For the most part, my weeks on mostly say "exhaustion, less pain overall, clear headed, etc."


Well it does sound like you have a pattern - somewhat better when you're 'on' the abx.

I try to go back and decipher my notes..and I can't make anything useful out of them...no trends at all.
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

njfillet
Regular Member


Date Joined Aug 2016
Total Posts : 169
   Posted 2/15/2018 5:51 PM (GMT -6)   
Girlie said...


Well it does sound like you have a pattern - somewhat better when you're 'on' the abx.

I try to go back and decipher my notes..and I can't make anything useful out of them...no trends at all.


Hah, I agree, most of my days I have arrows pointing to "Wed cont'" and just every ailment. At the end of my most recent cycle (3rd week ON) Thurs Feb/8 - today are all over the place, literally filled with extra papers taped in because I ran out of room.

Dahlias
Regular Member


Date Joined Jun 2017
Total Posts : 465
   Posted 2/15/2018 7:57 PM (GMT -6)   
I was feeling better while on abx until I added Mepron, which can make me feel pretty crummy. Threw off my pattern and now it's all mixed up.
"This too shall pass. It might pass like a kidney stone, but it will pass."

tickbite666
Veteran Member


Date Joined Mar 2014
Total Posts : 1604
   Posted 2/16/2018 6:05 AM (GMT -6)   
same here, I have no distinct patterns through my two weeks ON and three weeks OFF schedule. Only issue I have observed is 3 or 4 days into my ON ABX protocol I have some minor sx flare or herx.

1000Daisies
Veteran Member


Date Joined Apr 2016
Total Posts : 2438
   Posted 2/16/2018 10:59 AM (GMT -6)   
Sometimes I wonder, for some situations, if the abx is forcing them in hiding, but when stopping, they come out and wreck havoc...

My kids, for the most part, have no pattern in regards to their various treatments over the years - with a few strong exceptions.
Kid#1: Extremely sick for several years, very difficult to treat, but doing great now!
Kid#2: Still sick now despite being treated for years but doing better (not well yet).
Kid#3: Generally good but relapsing off/on.
Me: Adv Labs positive 2016 (suspected I passed to my kids)-not as sick as others, mostly battling fatigue and yeast issues (heart/kidney issues resolved)
Treating with herbals now.

Joe183288
Regular Member


Date Joined May 2017
Total Posts : 65
   Posted 2/20/2018 9:14 AM (GMT -6)   
I'm about finished with my Dr J protocol. I'm about at the 13 month mark and while I feel a little better it's not much. My big issue is brain fog, if I could get rid of that I could handle any other symptoms.

My experience is actually the opposite of most of you. I usually feel horrible when I'm on them. a few hours after taking them I don't feel as bad but iv'e always hated being on them and always look forward to my off weeks. Not to say I feel tons better on my off weeks but I never looked forward to getting back on them.
I'm actually meeting with my dr in a few weeks to look at other things that may be wrong with me. We have started focusing on mold. I've been taking cholestyramine the last week or so. I think it may be working some? who knows it's hard to tell at this point.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32695
   Posted 2/20/2018 12:36 PM (GMT -6)   
Joe - are you seeing Dr. J in DC?

You mentioned the mold focus...and that doesn't sound like that Dr. J.
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

Joe183288
Regular Member


Date Joined May 2017
Total Posts : 65
   Posted 2/20/2018 12:47 PM (GMT -6)   
No I'm not seeing Dr J. There is an LLMD that went to learn Dr J protocol and she follows it to a T. One of the NP there has really started focusing on mold so I'm going to revisit that.
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