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Antibiotics

Daffodil

Senior Member
Messages
5,873
hello. i would love to hear from anyone who did antibiotics for borrelia/bartonella. i am having a weird time on them.

i was first on VSL-3, rifampin, clarithromycin, and a diet. after a few months of that, i was feeling better neurologically but the 8 times a day bowel movements were killing me.

then, i was told to stop the VSL-3 (which i told my doc was likely causing the diarrhea...but it was worsened when i upped the clarithromycin dose)).

then, i was switched from clarithromycin to doxycycline, which caused vomiting..so now i am on minocycline instead....and no probiotics (even though i am starting with the numerous bowel movements again).

my neurological improvements are gone. the brain is all swollen feeling again. is this due to my cheating on my diet (which i did big time recently), changing meds, or something else? this is very frustrating.

i was all gung ho about the gut treatment helping me, but i am just feeling so discouraged right now.

(i am also on gcmaf)

i wish there were more patients who are on similar protocols on this website, who could share experiences! i could join the lyme forums but would really rather talk to people who have a CFS diagnosis...

xoxox
 

Sparrow

Senior Member
Messages
691
Location
Canada
I would love to hear more about what people have found helpful for Bartonella, as I have that as well. My doctor was not particularly helpful. I was only on one antibiotic, which did cause a heck on an unpleasant die-off reaction, but otherwise didn't seem to do much of anything.

I've gotten a lot of relief with Equiiibrant (though terrible die-off or whatever at first with that). It seems like my body is putting up a decent fight with a little help.
 

bertiedog

Senior Member
Messages
1,736
Location
South East England, UK
Just 3 days of clarithromycin nearly killed my nervous system. Within 6 hours of the first dose the migraine started and never went away. In addition I felt like death and when on the 3rd evening I developed severe dizziness I stopped it and vowed never to try it again.

I was taking it for a throat infection which also hit my gut but what has helped my gut to improve a lot is digestive enzymes plus betaine hydrochloride with each meal plus some basic probiotics in between. I am also taking some herbal capsules for Candida which I seem to have all the time probably cos I have to take steroids every day for my lack of adrenal function.

My Chinese doctor could see swellings under my eyes and I am positive this was from the effect of the Clarithromycin. He said it was poisoning me and I shouldn't take it again.

BTW I did ok on Azithromycin when I had a previous throat infection but still got headaches though not as bad as on the Clarithromycin.

Personally I don't think you can cheat in any way if you are on abx long term because they are so bad for your gut.

Hope you find something that helps. Had you thought of anything like the Buhner herbal protocol for Lymes?

Pam
 

Daffodil

Senior Member
Messages
5,873
hi pam. wow so clarithromycin was that bad! how awful.

I am not aware of buhner protocol but just decided I am going to do exactly what my doctor says for a year or two, to give this a fair shot. i will read about the buhner protocol though....did you try it?

so is your CFS any better with the gut stuff? the abx?
 

bertiedog

Senior Member
Messages
1,736
Location
South East England, UK
I don't think the antibiotics had much effect on my ME/CFS at all but what has helped is adrenal/thyroid support, using an oxygen concentrator daily and now a transdermal B12 spray plus a small amount of the other methylation supplements. My immune system is still below par though and I have low white blood cell count which means I am always at risk of picking up throat infections.

What I am trying to do is to take extra herbs etc to get over the infection I had as my throat is still red and a bit sore but I do feel much better in myself.

Certainly I will be avoiding antibiotics as much as possible because they just don't agree with me, probably cos of the yeast issue I have and also high levels of bad bacteria in my gut.
 

Daffodil

Senior Member
Messages
5,873
it looks like there is really no way to predict anything.....just a waiting game with the antibiotics.

I had a die off with clarithromycin and maybe a tiny bit of temporary improvement, but its all gone now.

i am so tired of this.
 

Daffodil

Senior Member
Messages
5,873
thanks lala! i wonder if the unrefrigerated probiotics are good or not....but i will have to try them now.

i am also going to ask my doctor if it might be worthwhile trying smaller doses of the VSL-3.

xox
 

Daffodil

Senior Member
Messages
5,873
hi all. just wanted to report that i am experiencing a significant increase in energy on the antibiotics now, about 4 months into treatment.

sadly, there has been no improvement at all in the severe brain fog i have.
 

Daffodil

Senior Member
Messages
5,873
another update: experienced a decline in the last few days, possibly due to it being that time of the month.
 
Messages
59
I am now doing IV antibiotics in Belgium with KDM, i hvae been feeling great!! dizzy but my energy is better than it has been all year, this might just be because of the anti infalamtory mecanisms of the antibiotics... i am in week 3 of 6, but i have no real hope of getting rid of the borrelia, cause i have still not heard of an ME-CFS sufferer that has gotten rid of their borrelia, but please tell me if I am wrong :)
 

Daffodil

Senior Member
Messages
5,873
hi alexa. thats great that you are feeling good. i am so happy to hear that. what does kdm say about the possibility of getting rid of the borrelia?

the reason the borrelia is active in us, is because our immune systems are not working properly. in order to address that, kdm uses treatments such as gcmaf, which he might prescribe once your inflammation is lower. hopefully, this will help you keep the borrelia in check.

please please keep us posted!
xoxoxo
 

Daffodil

Senior Member
Messages
5,873
hi all. i am on minocycline and feeling quite bad. it isn't a clear herxheimer reaction but it might be one. malaise, nausea, worse brain fog, chest pain, fatigue...just gross. :-/

has anyone else here taken minocycline?
 

Daffodil

Senior Member
Messages
5,873
hi all. so the VSL-3 probiotic sort of gives me diarrhea. i think this is normal for a little while, but not several months...so my doctor told me not to take it. he suggested another very weak probiotic which i cannot get here, so i decided to just take a tiny tiny bit of the VSL-3 powder instead of the whole packet. i did this for 2 nights and the sort-of-diarrhea started up again. so now i guess i will just try to eat fermented foods and hope the antibiotics don't do some real damage.

what concerns me, is that i read that azithromycin can increase risk of death by 250% (more if you have heart condition); i believe they say that this is related to its affect on gut flora. i might be on it soon intravenously and won't be able to take enough probiotics....

i have been on this protocol for 4 months now, and feel pretty awful...especially in the head. hard to keep up hope and depression setting in..trying to think positive.

briefly had increase in energy.

xo
 

maryb

iherb code TAK122
Messages
3,602
Location
UK
@Daffodil
can you do kefir/colostrum, much easier on the gut?
the VSL didn't do anthing for me either, trying Align at the moment. Its tough this gut thing, just got to keep trying different ones I think. My main problem is what to cultivate the kefir in, tried a variety of different things.
 

Daffodil

Senior Member
Messages
5,873
hi mary. thanks for the message.

isnt kefir made with yogurt? i am not exactly sure what it is, but tests show i shouldn't eat yogurt. i will try to buy some fermented foods such as sauerkraut, kimchi, tempeh, etc this week and try to eat some daily.

good to know i am not the only one having trouble tolerating probiotics. i read that it can mean ones gut is not "ready" for them - whatever that means.

i was prescribed butyrate for leaky gut but it made me super sick!

xox
 

maryb

iherb code TAK122
Messages
3,602
Location
UK
@Daffodil
you get the kefir starter and make it up with whatever you want - coconut milk is good, you know I shouldn't have dairy but sometimes think the live culture in the yoghurt take out whatever makes me intolerant and I'm okay with little bits of live yoghurt.
Just try one thing at a time - give you some idea how its working for you.
 

Daffodil

Senior Member
Messages
5,873
wow i had no idea that i could make kefir in something other than dairy!? thanks for letting me know.
xox
 

Creekee

Senior Member
Messages
143
Location
Arizona
Hi Daffodil,

I'm also having a bitch of a time on minocycline. This is week ten for me and I've got fluey symptoms, sore throat, dizziness and nausea. It's icky.

A year ago I did six months of doxycycline and that was even worse!

My practitioner has me taking colostrum. Also just ordered Plasmyc transfer factor and Florastor probiotic. I had been eating homemade yogurt with good response, but had to give it up 'cuz of the queasiness. Am thinking of trying water kefir. Wish I knew what it tastes like.

That's the wobbly story from here!