Treatment break

My platelets dropped too low (20s) so we had to backtrack a few things. Mepron, rifabutin and recently added ivermectin (straw that might have broken the back) as my platelets have been dropping for awhile.
A week off of those meds they are around 50, encouraging. Having another cbc this coming Friday.
I was hoping to restart Mepron/rifabutin at lower doses if platelets keep trending up but I am only to add ivermectin until we are consistently around 100.
My baseline is low but i am afraid to regress more without the meds that I was tolerating. And it’s one thing to feel terrible while on a full regimen vs feeling terrible on “nothing”.
I read people say they relapse hard a week or 2 off and it just distresses me. I know there is really no choice here but maybe I am just worrying too much over lost 2-3-4 weeks?
I am still on clarithromycin, minocycline, oregano oil and allicin.
My dr. says that rifabutin won’t leave me that easily and with current meds and trying to add ivermectin shortly should be enough until my platelets are high enough to carefully add rifabutin/Mepron back.
Every time i dip below my baseline it just scares me.
I have been off of those meds about 1.5 weeks so far and it will probably be at least another 1.5.

Thanks Garzie.
Yes, I know. Concerned about both but more about Babesia as I think we had bartonella more under control.
I improved a lot on bartonella treatment but then switching over to Babesia made all those improvements disappear. I don’t even understand how it’s possible.
I have been treating Babesia for awhile now but not much progress although I did herx a lot.
But it’s better to feel bad on treatment than bad off treatment.
I am to start ivermectin only after Fridays blood test. It is a new med and although we tried for about a week before everything blew who knows how it will go. Dr feels that it was very effective and might be easier to tolerate by itself for now. So perhaps not totally without treatment for long.
I am mainly struggling with how badly things can crash. Or maybe 3 weeks off some meds won’t make much difference. That’s the worry. I am trying to convince myself that maybe in fact this break is just part of the treatment and my body needs a break anyway.
I don’t think prolonged breaks in the past were beneficial for me.
Things have been trending downwards a bit but I know they can be much worse so that’s the worry.

Lovefishing…did you notice any improvement when taking Ivermectin?

lovefishing, are you taking Rifabutin and Mepron every day when on them? What dose?

BlondieStrong said...
Lovefishing…did you notice any improvement when taking Ivermectin?

I only tried for a week. Small dose too. 2mg. It did “something”. Probably not by itself but synergetic-ally with Mepron and other things. My platelets dropped from 60 to 21 too. That could be coincidental or not. My platelets were dropping consistently but not like this. Dr thinks it caused a massive herx in a combo and could be a potentially “direct” hit on Babesia in my case. I am due to restart ivermectin only if platelets keep improving on next blood draw but nothing else. Not the route i wanted though.

JMF84 said...
lovefishing, are you taking Rifabutin and Mepron every day when on them? What dose?

I have been taking rifabutin for about 1.5 years in latest stint. I took it before and we thought it was gone but after 3 months had to restart. Both times a total nightmare to get on. And it took about 3 months to get to 4 pills a day. Added Mepron about a year ago but again took awhile to get up to dose.

4 pills total of rifabutin and 7.5 ml of Mepron x 2 day. Yes, every day.

JMF84 said...
Thank you so much, lovefishing.

I hope you can get going with treatment again soon. I've just started a new protocol w/ abx for Lyme/bart/babs and some herbs that hit babs and bart. I'm thinking may have to go back on Mepron again at some point and maybe take Rifampin or Rifabutin with it. I'm a tough case too it seems.

Did you try taking any biofilm busters such as Oregano Oil, Methylene Blue or lumbrokinase? Tough cases are often the ones with biofilms that antibiotics hardly penetrate without help.

i am very sensitive to biofilm agents and have been experimenting with several of them gradually working my way up through the list starting with the less potent ones.

so far in order of easiest to tolerate to harder

NAC - still had to build up gradually to 1.5g 2x a day
Bromelain - started on 1/2 a 3000gdu capsule a day and found even that flared symptoms a little
lumbrokinase - used Doctors Best brand - approx equivalent to 8 full capsules of bromelain
Xylitol - surprisingly strong - really knocked me about at only 2g a day

also tried interphase plus in the past - had EDTA and enzymes - also v stromg

methylene blue may be a biofilm agent also - i have had to work up slowly on that from around 15mg a day to 120mg a day

lovefishing said...
Just a little update. My platelets are 142 2 weeks after stopping rifabutin/Mepron/ivermectin.

I have restarted Mepron/ivermectin. Tough… No rifabutin for now. Dr. Feels that I have been on it long enough.

Blood smears still show some bartonella despite long treatment. Unclear if resistance or just treatment of Babesia is releasing it from biofilms, etc..

Discouraging as there is no end to it. We thought I was done with bartonella but was told that Babesia can be that lock that really needs to be opened before everything goes.

That's quite a swift improvement given that it was around 20 before!

My apologies if I missed it but how long have you been on Rifabutin before you've stopped it? Some say it's really hard to get rid of Bart unless you eradicate Babesia. On the other hand, some just suffer from Bartonella itself after a cat scratch and that by itself is difficult to eradicate.

wladek83 said...


That's quite a swift improvement given that it was around 20 before!

My apologies if I missed it but how long have you been on Rifabutin before you've stopped it? Some say it's really hard to get rid of Bart unless you eradicate Babesia. On the other hand, some just suffer from Bartonella itself after a cat scratch and that by itself is difficult to eradicate.

Right. From 21 to 142. That’s the positive here. I wish my treatment would be as responsive. Btw my triglycerides jumped to 1,400 too. I am not overweight by any means, nor do I eat anything that would cause that. They are down to 600, still high but…
Dr never seen these numbers before but is convinced it was herx related and pulling back did the trick and not any particular med by itself. I guess we will see how platelets hold up.
I had 2 stints with rifabutin. First one was about 8 months. It took 3-4 to get to full dose. I started showing clean smears after about 6 months. After 2 consecutive clean ones he pulled me off of rifabutin. I wasn’t really feeling better though. 3 months without rifabutin. Next smear bad. Rifabutin again. Same 3 months to full dose. Same torture to get on. But this time after 6 months I made a huge breakthrough. Overnight. 3-4 months better. My c4a went normal too. Then I guess Babesia struck. And all downhill. Stayed on rifabutin another year. So, 1.5 total for 2nd stint. My smears were never clean though which is what people have when it’s totally over. Skin biopsy same, bart/babs positive. I am discouraged about bartonella situation because I don’t know exactly what’s happening. But he is firm on no rifabutin for now as Babesia can be in the way. He is the bart guru doc. If he can’t get rid of my bart than who can?

lovefishing said...

He likes oregano oil + allicin combo for bart so upping that to keep tabs on bart while we concentrate on Babesia. I don’t know… hard to lose a med that I was tolerating.
I herxed a lot but I don’t think I made progress with Babesia and maybe that will be the key.
Glad you are improving.

I guess if 1.5 year of Rifabutin didn't clear it up then I doubt another 1.5 year of the same thing would cut it. Perhaps it's Valtrex or Dapsone time? I've got a friend on large doses of oregano oil for a couple of years now. It helped with Borrelia and Mycoplasma but didn't touch Babesia at all. Bart still throws purple striae from time to time but in general oregano seems to help a bit with that. Sadly, after a few years of treatment, stopping it cold turkey results in relapse two days later which shows oregano + allicin might help to keep things at bay but won't get rid of it - at least not always.

I've read some reports cardamom and gardenia might be helpful with Babs. Those are on my "give it a try" list. Not sure about dosing though.

I have found that mepron makes certain other antibiotics much more potent. I had been taking clarithromycin and it wasn't doing much, started mepron and all of a sudden I was herxing.

Why this happens isn't clear, but I suspect atovaquone inhibits drug metabolism or inhibits efflux pumps. I don't know if it would do the same with rifabutin but it's possible.

Garzie,

T-lab is in same office as dr. M. He looks at the slides themselves (obviously) and he gives much more information vs what “official” report states. I had a slide that officially stated “inconclusive” but it was conclusive to HIM. Since I am his direct patient he can do that. The hematologist who he referred me to would examine everything himself since they draw cbc in the office and you get results in 10 minutes. I do not believe T-lab counts platelets but yes they are there and you can see them.