Another round of "take the medicines or delay?"

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.

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.

Yes, I'm taking S. Boulardii. Thanks!

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.

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.

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.

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?

I think I’d do fridays meds on Saturday

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.

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.

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. 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.

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. 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?

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.