HealingWell
Search Close Search
☰

Don't want to do this anymore -- bad idea?

Support Forums
>
Lyme Disease
✚ New Topic ✚ Reply
12
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 4/29/2019 12:21 PM (GMT 0)
I've been treating Lyme and coinfections for two years, and have been on heavy antibiotics for 18 months. I've "graduated" from the Lyme and babesia protocols and I'm supposed to start the bartonella protocol today, and I think I'm chickening out. I am allergic or react badly to many antibiotics, and I'm so afraid to start the Rifabutin.

I got permission to start with half the dose, I tested a little on my skin, and I chose a good day to start, and I was all set to take it when I realized it's from the same manufacturer as the last antibiotic I had a bad reaction to. (At the time, I questioned whether it might be a reaction to one of the inactive ingredients.)

Now I'm waiting to talk to the pharmacy and try to get it from a different manufacturer, and then the good time frame will be past -- lots of important things coming up later this week including doctor appointments for my children with Lyme. But I really just don't want to do it. I've been on antibiotics for two years and I'm feeling pretty good symptom-wise but my gut and mitochondrial functions are shot. I don't want to do this anymore.

I've been considering switching to a local LLMD and taking an herbal route to try to finish this up. But I'm also afraid of relapsing if I don't finish with this clinic. Any thoughts?
Posted 4/29/2019 1:06 PM (GMT 0)
I don't think you should continue with pharmaceutical antibiotics if you say your gut and mitochondria are shot. (Others will disagree, possibly.) People can and do have great results with herbal protocols, and taking time off to repair your gut will help you overall as well, even if you decide to resume pharmaceutical antimicrobial treatment later on. In addition to herbs, people heal with other modalities as well - rife, ozone, homeopathy, etc. - and a well-rounded LLMD should know about these treatments, too.

I have allergies and intolerable reactions to most antibiotics as well, so the "standard" combinations to treat Lyme and co-infections are not options for me. While I am still sick, I still have many ideas for modalities to try if my current regimen fails me. We're all different, so there's definitely no one-size-fits-all treatment, including pharmaceutical antibiotics. Do what feels right to you.
Posted 4/29/2019 1:35 PM (GMT 0)
Thank you, Saraeli. How do I know if I'm listening to my gut or lacking courage? Deep question around that little red capsule sitting on my table, lol.

Post Edited (Dahlias) : 4/29/2019 8:50:03 AM (GMT-6)

Posted 4/29/2019 1:45 PM (GMT 0)
You didn't say specifically what adverse reactions you had other than "gut and mitochondrial functions" but the usual concern with rifampin or rifabutin is CYP3A4 enzyme induction.

Adverse reactions to inactive ingredients is possible. Two that get many complaints are tartrazine (FD&C Yellow 5, E102) and Allura Red AC (Red 40, E129). I've never had a reaction to Yellow 5, but Red 40 caused effects similar to rifampin. This leads me to suspect that it induces CYP3A4 or related liver enzymes.

Most of my allergies went away after successful treatment of Lyme disease with antibiotics.
Posted 4/29/2019 2:17 PM (GMT 0)

Dahlias said...
Thank you, Saraeli. How do I know if I'm listening to my gut or lacking courage?

is the motivation coming from a place of love for yourself or fear?
after my sjs thing with bactrim i was terrified to do iv abx i can empathize with your dichotomy, btw months after rifampin i felt a little better but not while on it fwiw
Posted 4/29/2019 3:30 PM (GMT 0)
Dahlias,

Just offering support. Praying you will figure out the best choice for you and will have peace about it.

Have you done phosphatidyl choline IV’s and/or orals? My doc wants me to do this to heal the membranes that get damaged with long term chronic illness. I mention this because you said your gut and mitochondria are shot.
Posted 4/29/2019 4:45 PM (GMT 0)
I felt fine on mino, azith, and rifabutin - just slow improvement of symptoms over the period. it was the game changing protocol for me, 7 months straight daily dosing.

it can affect your TSH and platelets, so be sure to monitor those blood tests.

it maybe worth seeing how you respond to it, given you been at it so long.
Posted 4/29/2019 6:58 PM (GMT 0)
Thank you all for the support! I chased it down from another manufacturer and took half a capsule almost an hour ago. No dramatic immediate reaction, thankfully. I am so relieved.

Bluelyme, both, but today was definitely fear.

Quin, what is CYP3A4 enzyme induction? I Googled but I don't understand.

WBF, I've never heard of that -- will look into it, thank you. I'm using bone broth and L-glutamine for gut healing, and the B vitamins, fish oil and CoQ10 that my mitochondria are apparently starving for.

SierraDon, good to know!
Posted 4/29/2019 7:48 PM (GMT 0)
Glad your first dose went well Dahlias!

Btw - what do you mean about the mitochondria being shot?
Posted 4/29/2019 7:59 PM (GMT 0)
Thank you!

New holistic PCP suspected mitochondrial dysfunction and ran a test through SpectraCell. When she was going over the results with me, she said, "This is what your mitochondria need to function, and you have none of it." Lol. Almost everything was in the red. No wonder I'm tired.

Apparently this is linked to leaky gut, as I'm not absorbing nutrients from food well. So we're supplementing the missing vitamins and nutrients and trying to heal my gut.
Posted 4/29/2019 8:14 PM (GMT 0)
D - after being on atovaquone did you start supplementing with CoQ10?
Posted 4/29/2019 8:54 PM (GMT 0)
Girlie, yes, but I've been slacking on it for months.
Posted 4/29/2019 9:32 PM (GMT 0)
Difficult decision - it would suck to stop and switch treatment to herbals and have symptoms come back.
Posted 4/29/2019 9:40 PM (GMT 0)
It sure would. All systems are go for now. But I don't want to trigger a huge bart herx so I still want to increase it slowly.
Posted 4/29/2019 10:01 PM (GMT 0)

Dahlias said...
It sure would. All systems are go for now. But I don't want to trigger a huge bart herx so I still want to increase it slowly.

What do you think about contacting your NP and tell her how you’re feeling - and then if you do drop abx and end up wanting to go back on - they will know about it already?
Posted 4/29/2019 10:07 PM (GMT 0)
I have an appointment next month -- will just bring herbals up then.

Back to going slowly with the Rifabutin, do you think it would be ok to take it once a day instead of twice for this entire cycle? I guess I should call and ask that, but I've been calling so much. I'm taking mino and clinda with it.
Posted 4/29/2019 10:35 PM (GMT 0)

Dahlias said...
I have an appointment next month -- will just bring herbals up then.

Back to going slowly with the Rifabutin, do you think it would be ok to take it once a day instead of twice for this entire cycle? I guess I should call and ask that, but I've been calling so much. I'm taking mino and clinda with it.

It would prob be okay since you’re on two more abx ....

Entire cycle - is it two weeks ie m/w/f. And then M/t/w. Then two weeks off?
Posted 4/30/2019 12:09 AM (GMT 0)
This cycle, it's two weeks MWF and then two weeks off. I guess they're already taking it easy on me since the second week is only 3 days too.
Posted 4/30/2019 2:29 AM (GMT 0)

Dahlias said...
This cycle, it's two weeks MWF and then two weeks off. I guess they're already taking it easy on me since the second week is only 3 days too.

When you treated Babs - did you do 3 days both weeks? Or did you end up doing week 2 - five days of Mepron/malarone?
Posted 4/30/2019 10:02 AM (GMT 0)
Week two was five days of babesia meds.
Posted 4/30/2019 7:16 PM (GMT 0)

Dahlias said...

I've been considering switching to a local LLMD and taking an herbal route to try to finish this up. But I'm also afraid of relapsing if I don't finish with this clinic. Any thoughts?

Listen to your body, if you think you feel you need a break from pharmaceuticals, then switch to herbals and take a break.

I'm a big advocate of using pharmaceuticals over herbs, especially when it comes reaching remission. But there comes a time when you need to go off all pharmaceuticals for a few months, maybe even 6 months to a year. Give your body a break from the severe herxing, letting your body catch up with detoxing.

Dahlias said...

But I'm also afraid of relapsing if I don't finish with this clinic.

I know your mentality, no body wants to lose their gains, and everyone wants to keep treating thinking the next month or 2-3 months might lead to remission. But nothing wrong with a break... Even just a week or two, may be enough where you might want to get back into the fight.

Definitely hit the probiotics hard if you stop taking the pharmaceuticals...
Posted 4/30/2019 8:00 PM (GMT 0)
Dahlias - I’m thinking if you talk to your NP and tell her you need a break - she will be fine with that?
Maybe say for a month.
Just explain how you’re feeling.

Then you can think about it during the month without panicking and also how you feel...
after the month off you will be in a better place to make a firm decision ? (At your next appt)


Just call the triage and when they call back - explain how you’re feeling.
Posted 4/30/2019 8:10 PM (GMT 0)
Thank you, Charlie. I did take an extra week off before this cycle (with their ok). It was great.

Girlie, I started this cycle and survived, lol, so now I'm curious if it will help and I want to finish it. I called and asked if I can take the Rifabutin just once a day. No response yet. But I will definitely level with her next month.
Posted 4/30/2019 8:19 PM (GMT 0)
Will you post what she says about the Rif once a day?

The odd time (shhh) I skip an antibiotic but I don’t tell them.
I figure with taking three different ones at a time - missing one of them for one of the doses on one day can’t be a big deal....

But it may be different if you’re wanting to skip a dose on every day you’re supposed to take it..
Posted 4/30/2019 9:07 PM (GMT 0)
Sure. She's out Wednesdays, though, and the office has closed now, so I guess I'm doing what I want tomorrow, lol.
✚ New Topic ✚ Reply
12