Another round of "take the medicines or delay?"

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Dahlias
Regular Member


Date Joined Jun 2017
Total Posts : 456
   Posted 5/9/2018 2:18 PM (GMT -6)   
I'm having GI-related discomfort and once again don't know whether to push on with the antibiotics or not.

I've been having mild discomfort in my lower back for weeks, maybe months. I believe it is intestinal. I've been trying to take it easy on my gut and heal it, but I made the mistake of eating something that was a little spicy yesterday and it was worse today. (TMI: Also had mild diarrhea but that could have been anxiety over taking meds.) I was afraid to take my antibiotics and Mepron, so I skipped them this morning and took extra probiotics and L-glutamine.

The antibiotics include Clindamycin, which is notorious for causing C diff. Also, a week or two ago, I had a severe GI reaction to a different antibiotic that I have since stopped, and I really don't want to experience that again. Ugh.

What would you do? I'm afraid to mess up my gut too badly, but I also don't want to lose ground, and I worry about developing more drug allergies (the chance goes up with sporadic dosing as far as I understand).

And now I'm off schedule -- it's a complicated pulsing schedule involving MWF dosing, with other things on various other days. I had just started this cycle Monday after a week off.

goshawk
Veteran Member


Date Joined Sep 2016
Total Posts : 2108
   Posted 5/9/2018 3:12 PM (GMT -6)   
Hi sorry you have been struggling with this..

I just want to say that I made a decision to switch from abx to all herbals and I guess we will never really know if I lost ground or not. Any treatment can take time and have lots of ups and downs.

But I am getting better and I'm glad I made that decision to help my gut.

You need to be at peace with how you decide to treat... meaning, what does your heart tell you to do.


And remember that you can always go back to a treatment, or try using more than one way to get better...the important thing is that you need to be treating

and you need to have confidence in what ever path you choose.


Take care and hang in there, you will figure it all out.

Dahlias
Regular Member


Date Joined Jun 2017
Total Posts : 456
   Posted 5/9/2018 5:16 PM (GMT -6)   
Thank you! I'm not bad enough to have to give up abx, but I'm trying to put that off as long as possible because the abx and Mepron are really helping.
"This too shall pass. It might pass like a kidney stone, but it will pass."

Lyme, babesia, mycoplasma pneumonia. Diagnosed May 2017. Neuro symptoms began September 2017. Treating 11 months so far.

yancync
Veteran Member


Date Joined Nov 2015
Total Posts : 544
   Posted 5/9/2018 6:24 PM (GMT -6)   
Dahlias, are you taking a probiotic with s. boullardi? Something like Primal Defense?
I'm so sorry to hear you're having troubles. I don't know how people with GI Lyme can tell if it's the disease or the treatment causing issues! Hope you feel better quickly.
Parent of teen DS w/ CDC+ Lyme test Nov 2015, late stage Lyme + mycoplasma (stubborn/lingering), bartonella, babesia. Currently treating with pulsed antibiotics, moving toward maintenance and headed into remission - no sick days this school year yet smile

Website I started: ParentsofLymeKids.com aka Lyme Disease 101 for Parents

Dahlias
Regular Member


Date Joined Jun 2017
Total Posts : 456
   Posted 5/9/2018 6:59 PM (GMT -6)   
Yes, I'm taking S. Boulardii. Thanks!
"This too shall pass. It might pass like a kidney stone, but it will pass."

Lyme, babesia, mycoplasma pneumonia. Diagnosed May 2017. Neuro symptoms began September 2017. Treating 11 months so far.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32588
   Posted 5/9/2018 7:11 PM (GMT -6)   
Have you contacted your NP/PA from the clinic? I wonder what they would want you to do.
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

Dahlias
Regular Member


Date Joined Jun 2017
Total Posts : 456
   Posted 5/9/2018 7:27 PM (GMT -6)   
I called after the severe GI reaction to zith and they said I could skip that one for now and take L glutamine. I said I don't want to take it at all at this point -- don't want to go after mycoplasma during off weeks from babs treatment -- and they said ok. I've mentioned this concern before and they wanted me to push on. I think they're getting sick of my calls.

I feel like treating the mycoplasma during "off weeks" was really too much and pushed my gut too far. sad
"This too shall pass. It might pass like a kidney stone, but it will pass."

Lyme, babesia, mycoplasma pneumonia. Diagnosed May 2017. Neuro symptoms began September 2017. Treating 11 months so far.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32588
   Posted 5/9/2018 7:40 PM (GMT -6)   
Dahlias said...
I called after the severe GI reaction to zith and they said I could skip that one for now and take L glutamine. I said I don't want to take it at all at this point -- don't want to go after mycoplasma during off weeks from babs treatment -- and they said ok. I've mentioned this concern before and they wanted me to push on. I think they're getting sick of my calls.

I feel like treating the mycoplasma during "off weeks" was really too much and pushed my gut too far. sad


So you weren't getting any antibiotic free weeks?
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

Dahlias
Regular Member


Date Joined Jun 2017
Total Posts : 456
   Posted 5/9/2018 7:52 PM (GMT -6)   
Girlie said...
So you weren't getting any antibiotic free weeks?


One month no. Then it was 2 weeks normal protocol, 1 week myco, 1 week off for a couple months.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32588
   Posted 5/9/2018 8:01 PM (GMT -6)   
Dahlias said...
Girlie said...
So you weren't getting any antibiotic free weeks?


One month no. Then it was 2 weeks normal protocol, 1 week myco, 1 week off for a couple months.




How did you feel on your one week off? Do you feel somewhat better?
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

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32588
   Posted 5/9/2018 8:03 PM (GMT -6)   
I don't have clear patterns. Sure, when I'm taking Mepron my head feels worse...but I can't say I feel a whole lot better on my weeks off.


IDK now I'm concerned that Bartonella is having a party in my body. ( I wouldn't go on the Cipro and Rifabutin/Rifampin doesn't go well with Mepron)
Although I have seen someone's protocol who took Rifabutin on a separate week than the Mepron.



I hope your GI symptoms get better, Dahlias.
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

Dahlias
Regular Member


Date Joined Jun 2017
Total Posts : 456
   Posted 5/9/2018 8:20 PM (GMT -6)   
Thanks! I definitely backslide on my weeks off. It seems to be a little less each month though. I'm ready to be back on and kill this stuff, if it's not going to destroy my gut. Drinking vegetable soup right now ...

I understand about the Bartonella concern. Do you think they'll move on at your next appointment? When do you come to D.C. again?
"This too shall pass. It might pass like a kidney stone, but it will pass."

Lyme, babesia, mycoplasma pneumonia. Diagnosed May 2017. Neuro symptoms began September 2017. Treating 11 months so far.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32588
   Posted 5/9/2018 8:42 PM (GMT -6)   
Dahlias said...
Thanks! I definitely backslide on my weeks off. It seems to be a little less each month though. I'm ready to be back on and kill this stuff, if it's not going to destroy my gut. Drinking vegetable soup right now ...

I understand about the Bartonella concern. Do you think they'll move on at your next appointment? When do you come to D.C. again?


Well I wanted to see Dr J himself but couldn’t schedule one after my April appt because they weren’t booking his August appts and July was all booked up.
So I asked to be put on the list for when they do book August and I got a call today and booked for one - yay!
I have a couple questions for dr j - regarding a couple of findings on my brain/spine mri’s.

I prefer to go in July as I don’t think my protocol will be changed until I go there and it will be 6 months on the Babesia protocol - I am so done with the Mepron. The 4 tsp daily for 5 in a row is horrid.

I did tell them that if there’s a cancellation in July to consider me - as long as I have a few weeks notice so I can book flights.. etc. Long shot but you never know.

Do you do phone appts too? Or all in person?
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

Dahlias
Regular Member


Date Joined Jun 2017
Total Posts : 456
   Posted 5/10/2018 6:31 AM (GMT -6)   
Yay, congratulations on getting that appointment! :D Is it for in person? All of my appointments are in person.

That much Mepron, ugh. Do you think you're babs if you're not herxing on that protocol? One down? I can't believe it will be six months already -- seems like you were just making plans for your first trip there.

Back go gut issues, I took my stuff this morning, but now I'm a day off schedule and I'm not sure what to do. Just treat this as Wednesday and push everything back a day for the rest of the cycle?
"This too shall pass. It might pass like a kidney stone, but it will pass."

Lyme, babesia, mycoplasma pneumonia. Diagnosed May 2017. Neuro symptoms began September 2017. Treating 11 months so far.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32588
   Posted 5/10/2018 9:39 AM (GMT -6)   
I think I’d do fridays meds on Saturday
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

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32588
   Posted 5/10/2018 9:50 AM (GMT -6)   
Do you get any anxiety with the mepron?

What about sweating?

Head pressure behind the eyes?
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

Dahlias
Regular Member


Date Joined Jun 2017
Total Posts : 456
   Posted 5/10/2018 10:42 AM (GMT -6)   
I think that's what I'll do. And I guess that pushes next week by a day too.

I get anxiety and anger/irritability with the mepron. It was horrible and scary when I first started ... now it's milder. I get night sweats too. No head pressure that I'm noticing right now.
"This too shall pass. It might pass like a kidney stone, but it will pass."

Lyme, babesia, mycoplasma pneumonia. Diagnosed May 2017. Neuro symptoms began September 2017. Treating 11 months so far.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32588
   Posted 5/10/2018 10:47 AM (GMT -6)   
Dahlias said...
I think that's what I'll do. And I guess that pushes next week by a day too.

I get anxiety and anger/irritability with the mepron. It was horrible and scary when I first started ... now it's milder. I get night sweats too. No head pressure that I'm noticing right now.


I would go back on schedule next week. So that means you'd only have Sunday off, and back on Monday, right?


Did you have the anxiety/anger...before going on the Mepron...or did it bring it out.

What about the night sweats...did you get them prior to the Mepron?
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

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32588
   Posted 5/10/2018 10:49 AM (GMT -6)   
Dahlias said...
Yay, congratulations on getting that appointment! :D Is it for in person? All of my appointments are in person.

That much Mepron, ugh. Do you think you're babs if you're not herxing on that protocol? One down? I can't believe it will be six months already -- seems like you were just making plans for your first trip there.

Back go gut issues, I took my stuff this morning, but now I'm a day off schedule and I'm not sure what to do. Just treat this as Wednesday and push everything back a day for the rest of the cycle?


Yes it's in person this time. It looks like I'll be having 4 appts per year (approximately) with two of them being in -person.

It will be hot when we're there...hopefully all buildings have air conditioning...

I think I may be done with babesia. Not really herxing...but I do feel worse head pressure - I mean some of the stuff we experience can also be side effects of meds....
But, definitely not sweating as much....I do occasionally get the sweats during the day - not just at night.

I know - don't know where the time has gone....I was hoping to get back to work by the end of summer...but I doubt that's going to happen.
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

Post Edited (Girlie) : 5/10/2018 10:52:01 AM (GMT-6)


Dahlias
Regular Member


Date Joined Jun 2017
Total Posts : 456
   Posted 5/10/2018 10:52 AM (GMT -6)   
I had night sweats before the Mepron, but they increase when I take it. Had some irritability too but more depression than anxiety before. I think it's partly the medicine itself and part herx. I'd be slammed with a huge wave of anxiety shortly after taking the Mepron during the first cycle or two -- like I could feel it hit my system. What effect does it have on you? Has it changed?

Dahlias
Regular Member


Date Joined Jun 2017
Total Posts : 456
   Posted 5/10/2018 10:58 AM (GMT -6)   
Yes, it will be hot, but all buildings have air conditioning.

That's awesome if you're done with babesia! It does sound that way. smile I guess it's good to keep treating it a little more just to make sure.

That's disappointing about work. But slow and steady will get us there eventually.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32588
   Posted 5/10/2018 11:01 AM (GMT -6)   
The Mepron isn't hitting me as hard as it did - when I was self-treating last summer/fall.
and I was just on 1 tsp twice daily then.

The head pressure and sweating aren't as bad this time.

But, I'm having a lot of shoulder blade pain as well as neck pain ...and I'm concerned that bart is going unchecked.
I was supposed to go on Cipro with the Mepron - that would target both bart and babs together.
But, I refused the cipro.

I don't know why I can't do one week Rifabutin/Rifampin and the next week Mepron.
The Rifampin has a fairly short half-life, so if I did the first week on it, it wouldn't be in my system for the 2nd week with Mepron.

I have trouble swallowing the mepron sometimes. I put it into my mouth and sometimes I can't do the swallow right away....it mades me shudder...
If I don't eat enough food with it, I get some burning in the tummy.
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

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32588
   Posted 5/10/2018 11:04 AM (GMT -6)   
Dahlias said...
Yes, it will be hot, but all buildings have air conditioning.

That's awesome if you're done with babesia! It does sound that way. smile I guess it's good to keep treating it a little more just to make sure.

That's disappointing about work. But slow and steady will get us there eventually.


T (my PA) said during my phone consult in April that it sounded like my symptoms were mostly bartonella...so hopefully she wrote that down somewhere.


Question: Aren't we supposed to get appointment notes other than the initial consult? I never got anything after my phone appt. with T in April.
Is that how it works? Nothing in writing? We have to make our own notes...or try to remember?
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

Dahlias
Regular Member


Date Joined Jun 2017
Total Posts : 456
   Posted 5/10/2018 11:13 AM (GMT -6)   
They were alternating mycoplasma/babesia treatments for me, so I wonder if they might be open to alternating bart/babs for you. Maybe they find it more effective to hit those hard one at a time? Did you ask about that idea?

Hopefully with babs knocked down, bart treatment should be quicker and more effective when you get to start it.

Is the mepron harder to swallow than before? Sometimes I think our bodies tell us when they've had about enough of something.

I haven't gotten appointment notes after the initial consult, except the protocol. But I think they try to put all the directions on there (both front and back). They didn't send you that? Seems like you should get that.
"This too shall pass. It might pass like a kidney stone, but it will pass."

Lyme, babesia, mycoplasma pneumonia. Diagnosed May 2017. Neuro symptoms began September 2017. Treating 11 months so far.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32588
   Posted 5/10/2018 11:21 AM (GMT -6)   
Yes, I did get the protocol sheet.

But, just what we discussed isn't on there...like the symptoms I reported...and what she thought (that sounds like bart is my dominant infection)...

Hopefully she wrote it down but just didn't send me notes.


Yes, the Mepron IS harder to swallow....it's like there's a block there...yah - I've wondered if my body is saying "you don't need this anymore"...


I didn't realize there is a mycoplasma specific protocol. Did they clinically diagnose...or did you have a positive test for that?
And the meds are different than regular lyme meds?


How are you with Mepron and the temperature in your house during summer. We don't have air conditioning, so in the summer months, I have to be careful because when we have our really hot spell, our house does get very warm.
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
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