My lyme doc wants to put me on this for 14 days, then change to a similar herbal. I know its a different abx in that it's not absorbed in the gi. Any side fx? I'm not even sure yet if my insurance will cover it. She said many insurances have issue with it for some reason. Figures. I also have candida and am on megaspore
Posted by Lymetoo (Member # 743) on :
Let's see... It makes candida worse, it kills off all kinds of beneficial bacteria.
What else would you like to know?
That it made me way way worse and 10 years later I'm still mad at that doctor??
Posted by sammy (Member # 13952) on :
Have you already seen a GI doctor & been diagnosed with SIBO? Before taking any medication or treatment, you should always have all the proper testing done to verify the suspected diagnosis/ cause of your symptoms.
Xifaxan is a super powerful & sometimes dangerous antibiotic that can bring great relief or misery. It has to be used with caution & care.
I’m sorry if this is hard for you to hear right now. I just don’t want you or anyone like you to get hurt.
Take care
Posted by Lymetoo (Member # 743) on :
Amen.
Posted by 6Hypnone (Member # 47629) on :
Worse than any other broad spectrum abx? She said it's not the same as other abx. Plus testing is too expensive. Shes basing on symptoms.
Posted by Lymetoo (Member # 743) on :
That was what my doctor did to me. No testing. He just assumed.
All I can say is that it made everything worse and now 10 years later I have so many food sensitivities that it has made my life very difficult.
I can't so for sure that is was the abx, but nothing has been right since and I have not seen that doctor since.
I knew right away that it made everything worse.
Posted by nomoremuscles (Member # 9560) on :
I used xifaxin a couple of times, normal dose the first time, then double dose -- all as per Pimental's lab. It helped for about a week, then the microbes regrouped and things went back to being very bad.
Did it make me/gut worse?
Don't know. Very hard to say, as my gut was already wrecked from extended ILADs-style abx Lyme trx.
I have only tolerated a small handful of foods for about 10-15 years now. Lost tons of weight, and have terrible autoimmune syx in muscles, esp legs, from almost any food reaction.
Currently looking into a peptide LL-37, which seems to correct gut function by sending signals to cells to repair damage, while killing bad bugs and encouraging the growth of helpful ones. Some have had food intolerances turn around using this stuff, and some have had their autoimmune syx reverse. But it's relatively new, and very hard to find reliable accounts. Terrified of possible reactions.
Posted by Robin123 (Member # 9197) on :
FYI - Donna Gates and Jill Carnahan both address SIBO - you could take a look at their websites. Also Josh Axe is good on healing the gut. And Green Med Info is a good site for researching.
Posted by 6Hypnone (Member # 47629) on :
I know my regular ND can treat sibo with just herbals. And this doc was gonna switch to that after 14 days. But I'm sure if I said I was uncomfortable she'd go another route. Why is this one worse than other abx? Looks like Jill recommends xifaxan too as far as abx.
Posted by Lymetoo (Member # 743) on :
I don't know, 6H .. but it's like "nomore" said .. Helped at first. (like a week or so)
Then it all got way worse. Believe me, you do not want to be down to 5-10 foods to be able to eat.
[ 02-14-2019, 03:47 PM: Message edited by: Lymetoo ]
Posted by 6Hypnone (Member # 47629) on :
I'll ask my ll.
5-10?
Posted by nomoremuscles (Member # 9560) on :
Hi 6Hy,
Lymetoo is right about this.
You don't want to screw up your gut flora any worse, if possible. My gut was so bad at the time that I felt like I had no choice but to do the xifaxin. And, as I said, it was a VERY temporary fix, about a week and I was back to being terrible.
Also, regarding Donna Gates -- I haven't read her stuff in a while. But when my gut first started going off, around 2002, I got her book (Body Ecology Diet) and followed it to the T. Bone broths, veggies, sea salt, all of it. Didn't help one bit.
Over the next years, following the advice religiously, I watched my tolerated list of foods go down, one after another, till I was left with two. Think of that: two foods. Now I tolerate a few more, but reading people say they are down to 5-10 foods ... well that sounds heavenly to me.
I think BED, and other recommended approaches to gut health, will work for fairly healthy people with a bit of gut trouble, gas, bloating, etc. But once the flora is shot, none of that stuff works. I haven't spoken to anyone with a wrecked gut that got fixed by any of this.
Some people have suggested that many (or most) of our chronic syx may be being caused by the gut and not the Lyme and co's. I am at a point now where I think this idea is more right than wrong. I can provoke classic "bartonella" syx by eating certain foods. Same goes for Lyme syx, babesia, and so on. I don't know what's going on with this, but I am having more and more trouble believing the standard chronic Lyme argument at this point. If you'd asked me 10-15 years ago, I would have been completely certain that the prevailing ILADS dogma was correct. But now?? No idea anymore.
Once the gut went, my thyroid went, hair started falling out, skin got screwy, autoimmune sys started including spasticity, neuropthy -- everything collapsed.
I think now that the gut may be the ticket to the whole thing. But, who knows, my own experience may be clouding my judgement. Either way, I wish you the best. I understand how miserable this can get. Good luck with whatever you choose.
Posted by Lymetoo (Member # 743) on :
I was also on the BED diet .. it just made the histamine issue worse.
What my concern is about the abx is that it must kill off specific beneficial bacteria that we REALLY need.
There is not enough research to really know what it kills off and what it does NOT kill off.
I also cannot digest oxalates very well .. so look that up and see what foods are left. (nothing)
Posted by 6Hypnone (Member # 47629) on :
Good lord. I agree the gut is important. And to suffer so f*ing much following a strict diet w/ZERO payoff is infuriating!!! I dont even know what I should be eating. I try to follow the blood type diet too. Even more is limited. I've been having GI issues past 5 days and not sure why.
What about doing a comprehensive cdsa? Could that show what's going on gut-wise? Is xifaxan worse on the gut than other abx?
Posted by Lymetoo (Member # 743) on :
I took abx for Lyme and babesia for 4 straight years. Nothing messed me up more than 2 weeks of Xifaxan, which was taken about 5 years later. Maybe more than 5 years later.
Posted by sixgoofykids (Member # 11141) on :
I treated SIBO naturally with herbs (I can't remember which ones, but they're mentioned in articles about SIBO). Once the infection was under control, I started taking a tsp of sauerkraut juice every few days (it's all I could tolerate) and built up from there to rebuild my gut bacteria.
I had histamine intolerance due to the SIBO so ate low histamine at the time.
Posted by klutzo (Member # 5701) on :
I was also told dx of SIBO is "not done around here" and was given Xifaxan. Took one pill and doubled over with pain. Stomach started bleeding. I never took another and bleeding stopped next day.
Doc then put me on Flagyl instead and it was like a miracle. After 2 days all of my symptoms were gone, not just gut sx.....
but all 4 of my sleep disorders gone, irritable bowel and bladder gone, muscle pain gone, fatigue gone, depression and anxiety gone. The only thing left was slight low back pain.
Sx came back 2 weeks after stopping Flagyl, I was put back on it, cured again, once again returned 2 weeks after stopping.
ND tested probiotics 1 month later after pushing them hard. I had plenty of both kinds of bifidus but zero acidopholus colonies, and they are needed to make serotonin.
Posted by lightfoot (Member # 2536) on :
klutzo, wow!!! Sounds like flagyl is treating the root cause....Lyme/co-infections? Usually it is a long term treatment if I am correct.
Posted by Ellen101 (Member # 35432) on :
I have done several rounds of xifaxin and actually think it’s a great treatment. The only side effect I had was a yeast infection as I was not on probiotics. I was on it for SIBO but interestingly enough while on it my vocal tremor/spasmodic dysphonia completely cleared. I have had different insurances and had no problem with any of them covering it.
Posted by WhitneyS (Member # 25666) on :
So my two cents-- they do have at home kits my Dr had me do for SIBO. They're $200, so not too bad. But I dont ever like treating anything without a test...even after treatment how would you know its gone without pre and post-testing?
I did a very intensive herbal protocol for SIBO and it didnt work, I still tested positive. I did Xifaxin and it worked in one week. Test was free and clear.
I dont think I had any problems with the Rx but I did have TONS with the herbs-- it was hell. So ya you kill good bacteria but if youre taking abx...you already are...so I would say 100% test-- then take the medication.
Posted by 6Hypnone (Member # 47629) on :
But I heard the test can be a false negative. And I Don't have the money. And that was my question re xifaxan... How is its killing good bacteria any diff from the other abx that do the same thing? It's made to sound as if it's much much worse.