(Partial) Success with Psyllium husk, next steps need to taken

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TSBerlin
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(Partial) Success with Psyllium husk, next steps need to taken

Postby TSBerlin » Sun Sep 11, 2022 3:49 pm

Hi,
I’m 33 and a male (I’m sorry for potential language mistakes, English is not my mother tongue).

I have been diagnosed with C Diff on 11 July 2022 via a stool analysis. My symptoms are (were) watery diarrhea (up to 8 x times a day in its peak), flatulence (with very bad odor), cramping, tiredness (only in the beginning). They quickly began in March 2022 after ending a therapy against SIBO (small bacterial overgrowth) with herbal antibiotics (allicin and oregano).

In the beginning, I thought that my symptoms were just a phase of bad IBS and would finally resolve. Weeks later, the idea of having an inflammed pancreas came to my mind and I went to an hospital. They checked me and didn’t find anything, but recommended a stool analysis to me. Out of desperation, I ordered the most comprehensive stool analysis from a lab, the results showed a CDI (and a derailed protective gut flora).

I read about the infection and possible treatments. I wanted to try it „naturally“ first and experimented with different probiotics, psyllium husk, zeolite + bentonite and bitter drops (something like Iberogast). The probiotics alone were not strong enough, however the psyllium husk and zeolite + bentonite have an effect (maybe also in addition the probiotics, but not alone). Bowel movement normalised to a certain degree (not perfect, but very far away from watery diarrhea and less frequent BM), but when I stopped taking psyllium husk and zeolite + bentonite, watery diarrhea came back. So now I take the stuff again and observe again the described normalisation.

I read that psyllium husk flushes C Diff and the toxins out (and feeds the good bacteria). Maybe this explains my improvements while taking it. My question is what the possible options are for me at the moment because a) the situation is not very stable (when I stop to take it, the symptoms return) and b) digestion is not 100% normal as explained and c) my diet is also still restricted, e.g. I do not tolerate meat right now.

I could increase the dosis of psyllium husk, zeolite + bentonite and maybe also the probiotics to see if this further decreases my symptoms.
And/or I could add further remedies that might have a positive effect on defeating c diff (which ones?).

(And of course, if I finally fail with my natural treatments, I could go for the standard antibiotics cure)

Does any one have experience with a case like mine where it is possible to get the symptoms under control, but not yet achieve a full recovery?

I’m looking for the next steps to take in hope for a full recovery. Thank you very much for any input based on your experiences and knowledge (of course no medical advice).

NanciT
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Re: (Partial) Success with Psyllium husk, next steps need to taken

Postby NanciT » Sun Sep 11, 2022 6:36 pm

Hello and Welcome to the site, please read the first thread for all new posters.

If you were seen in the ER they did not start treatment for CDIFF?? Generally you would be given a course of Vancomycin.

It's important to treat CDIFF, it sounds like you may have had it for some time.

I have been on this site a long time, had several battles with CDIFF myself and each required treatment. I don't think you will find advice here in reference to treating with Psyllium husk (metamicial) which is generally given for constipation.

Our focus is to support those going through this often difficult illness.

If it were me, I would see a GI doctor and get checked out in order to make a full recovery.

Take Care

NanciT

beth22
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Re: (Partial) Success with Psyllium husk, next steps need to taken

Postby beth22 » Mon Sep 12, 2022 1:02 am

I agree with Nancy and would see a GI specialist. I also would test again to see if what you have now is still c difficile. Some tests show that you have the bacteria, but not the toxins. Some people have the bacteria and will test positive, but do not have an active case. I also had SIBO and treated it with Xifaxan and it did not make me relapse with c difficile. Did you ever get tested for SIBO with a breath test? Again, I would definitely see a GI and ask if these supplements may not be contributing to your issues. One of the things you are taking is clay and too much of it is also not healthy.

roy
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Re: (Partial) Success with Psyllium husk, next steps need to taken

Postby roy » Mon Sep 12, 2022 2:42 am

Some "natural" medications simply absorb or bind the toxin so it passes out but they still allow the bacteria to proliferate and produce an ever increasing amount of toxin.
I think the cure rate in clinical trials for that type of treatment was as low as 5%.
Yes it can work if your simply colonised without illness but if you have symptoms of C. Diff colitis and a positive c. Diff test you will be berrer off to get mainstream medical advice.
Also.
Why were you tested for sibo in the first place and why were you treated with herbal meds?
If your relying on a herbalist they probably will not have access to the tests required for an accurate diagnosis.
The numbers may have changed recently but there's 27 types of C. Diff
13 produce toxin, some very little some a lot.
14 are Totaly harmless and are normal gut flora (same goes for E.Coli, Strep etc).
Basic broad spectrum tests pick up on them all.
Don't rely on snake oil prescribed by quacks!

TSBerlin
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Re: (Partial) Success with Psyllium husk, next steps need to taken

Postby TSBerlin » Tue Sep 13, 2022 7:52 am

Thank you all very much for replying!!

"If you were seen in the ER they did not start treatment for CDIFF?? Generally you would be given a course of Vancomycin."
-> ER are overcrowded in Germany. My case was not important to them at all (compared to e.g. traffic accidents). After hours of waiting, they did an ultrasound and ran a blood test. No signs of acute organ problem or something similar, so they just sent me home and recommended to me doing a stool analysis and coloscopy at a gastroenterologist. As waiting lists for such doctors in Germany are insane, I decided to ordner a stool analysis by myself (and pay for it myself as a consequence). This stool analysis included testing for c.diff., this is how I finally knew that I had the infection (after months of having it).

I had an appointment via telephone with the doctor running the lab, who is a rather known doctor in Germany, for further advice. I told him my symptoms and that they endured since months, ultimately he just prescribed me S.Boulardii and some digestive enzymes. His support was rather disappointing.

"Some tests show that you have the bacteria, but not the toxins."
-> My test justs measured "C.Diff.", not the toxins. I have the same test from the same lab run in 2019 where C.diff was tested negative and back then I had no symptoms like now. Also, my symptoms match the infection.

"Did you ever get tested for SIBO with a breath test?"
-> Yes, according to the North American Consensus.

"Why were you tested for sibo in the first place and why were you treated with herbal meds?"
-> Because of symptoms linked to IBS. I had three rounds of therapy against SIBO. Herbal, Flagyl + Xifaxan, Herbal (Oregano + Allicin). The last round with herbal antibiotics got the breath values down and according to the breath test done 1 day after therapy, SIBO is gone. Herbal antibiotics can be pretty strong. In my case, they not only killed the bacteria in the small intestine, but also some in the large intestine, which made room for C.diff. My C. diff. symptoms started few days after ending the "successful" SIBO therapy.
My stool analysis clearly show shifts of good bacteria in the large intestin. My IBS symptoms were not nice, but nothing compared to the C.diff. symptoms. I regret having taken the herbal antibiotics. For information, I was treated for SIBO by gastroenterologists and they also use herbal antibiotics. I would not underestimate their potency and risks as a result.

You suggest that my current supplements of psyllium husk and zeolite+bentonite might only flush out the toxins, but not the bacteria itself and the spores if I got it right. But isn't this at least a first step? And when probiotics are added, couldn't they be strong enough to expel the C.diff. bacteria? Is this thinking too naive?

In other posts in this forum, I read success stories about Bacillus coagulans, which I will now try, too.

In the end, I might be losing time and I should start standard therapy right away. But I'm afraid of ending with months of taking antibiotics, round after round, as I read in some topics here.

beth22
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Re: (Partial) Success with Psyllium husk, next steps need to taken

Postby beth22 » Tue Sep 13, 2022 1:33 pm

If your symptoms are mild, then supplements can sometimes help. I used to take Pepto Bismol when I had low grade c difficile, but if the infection is more severe, they don't help much. that has been my experience and what I have learned from reading posts here over the years.

Do you have Dificid in Germany? If you do decide to take an antibiotic to treat the c difficile, that is better than vancomycin. It kills fewer other bacteria and concentrates on the c difficile. Cholestyramine is something that carries out toxins. It is used as a cholesterol lowering medication, but used to be given as part of a treatment for c difficile to get out the toxins after other treatments. I would ask your GI.

GtrGrl
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Re: (Partial) Success with Psyllium husk, next steps need to taken

Postby GtrGrl » Tue Sep 13, 2022 7:23 pm

I’m sorry to hear of your difficulties but also interested to know you think this is due to the herbs you took for SIBO. I’ve been told I need to treat mine and I’ve been holding off due to this exact fear. As you say, herbs can be potent and they’re also broad spectrum.

S Boulardii has been shown to have some effect against C Diff so that wasn’t terrible advice from the doc but is not a treatment by itself; it plays more of a supportive role. Was he medical or a naturopath?

I don’t have anything to add to everyone else’s good advice, except that your worry is understandable but you won’t necessarily end up having repeat rounds of antibiotics — and that like Beth says, if they want to prescribe some now, try to get Dificid. I wish they had given me that the first time round, and for an extended period to really ‘knock it on the head’ (although mine was very bad, with colitis — if your case is more mild, the standard dose of 10 days might be enough for you).

roy
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Re: (Partial) Success with Psyllium husk, next steps need to taken

Postby roy » Wed Sep 14, 2022 3:34 pm

Dificid is called Dificlir in Germany.

TSBerlin
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Re: (Partial) Success with Psyllium husk, next steps need to taken

Postby TSBerlin » Wed Sep 14, 2022 5:10 pm

"Cholestyramine is something that carries out toxins. It is used as a cholesterol lowering medication, but used to be given as part of a treatment for c difficile to get out the toxins after other treatments. I would ask your GI."
-> @ beth22: so you say that it USED to be given. In case I'm prescribed Dificid, this is not necessary in addition, right?

"I’m sorry to hear of your difficulties but also interested to know you think this is due to the herbs you took for SIBO. I’ve been told I need to treat mine and I’ve been holding off due to this exact fear. As you say, herbs can be potent and they’re also broad spectrum."
-> @ GtrGrl: Well, I have no proof for that, of course. But the symptoms I have started < 1 week after ending the herbal therapy. I have a stool analysis from 2019 where they tested for C Diff, too, luckily. So I know that I haven't had it since ever. Plus the main thing is my current symptoms are unprecedented for me. They have not much in common with my general IBS symptoms.
If you decide to do a SIBO therapy, there are probiotics that can be taken while on SIBO therapy (to prevent C Diff and other microbiome damages). Also, I have seen a study in which good results for a restrictive diet could be achieved (no medication). The diet consisted of eating zero carbs for four weeks. Just as an information, no advice. Personally, I find this result plausible. My brother, with IBS symptoms, has put himself on such a diet and his symptoms are gone.

"S Boulardii has been shown to have some effect against C Diff so that wasn’t terrible advice from the doc but is not a treatment by itself; it plays more of a supportive role. Was he medical or a naturopath?"
-> @ GtrGrl: He is a medical doctor. Okay, good to know it can have at least some effect. Stupid enough from the doctor that I told him that I was already taking S Boulardii at that moment. He just prescribed me another brand. Maybe he wasn't even listing when I was saying that.

"Dificid is called Dificlir in Germany."
-> @ roy: That's correct, thanks! I looked up price which is about EUR 1,700. I hope I get a prescription.

Thanks to you all! I will let you know how things turned out for me.

roy
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Re: (Partial) Success with Psyllium husk, next steps need to taken

Postby roy » Wed Sep 14, 2022 5:58 pm

I am in the UK but our USA friends will be shocked at the price of Dificid in Europe.
The USA cost is over $4000.
Forget Cholestyramine.
It's not a treatment and not advised to take alongside other medication as it can bind the meds and stop them working.
Being Colonised is not a disease, it's just another variation of normal.
Dr must make a diagnosis If test and symptoms match.
Best scenario for a "mild" case is it resolves on its own.
You might find your better off if you don't add anything new and that includes herbs and probiotics.

TSBerlin
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Re: (Partial) Success with Psyllium husk, next steps need to taken

Postby TSBerlin » Tue Sep 20, 2022 5:38 pm

Wow, the price in the US is quite heavy!

"You might find your better off if you don't add anything new and that includes herbs and probiotics."
@ roy: Do you mean while taking the antibiotics when i will get the prescription?

Alongside the antibiotics, I was planning to take the supplements I'm already taking right now, as they ease my symptoms: psyllium husk, bentonite+zeolite and probiotics (those I know that I tolerate well). Of course with enough temporal distance from the antibiotics, e.g. 4 hours.
I thought these supplements could even be beneficial in addition to the antibiotics, e.g. to flush out the c.diff bacteria.
Or am I mistaken here?

NanciT
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Re: (Partial) Success with Psyllium husk, next steps need to taken

Postby NanciT » Tue Sep 20, 2022 5:49 pm

Take the antibiotic if you can get it, Dificid is the BEST we can get here in the US and it is $5000 for a 10 day treatment. It works.

Most will take Kefir( I could not tolerate) but I would not add supplements. Let the antibiotic do it's job


NanciT

TSBerlin
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Re: (Partial) Success with Psyllium husk, next steps need to taken

Postby TSBerlin » Sun Jan 29, 2023 1:03 pm

Hi, in order to report how things went for me: I finally got a prescription for Vancomycin for 10 days (Dificid was not covered by the insurance) in the end of September. After taking it, my stools continued to be a bit loose, but nothing compared to before. Some weeks after, I retested to be sure and the result came back negative. Last week, I retested again, since I still experience some sorts of symptoms. The result came also back negative. I just wanted to know be sure, as my digestion is not exactly as it was before and I have some kind of IBS. But I have also had IBS before the C Diff infection, it just felt a bit differently. I guess I have to be happy with my result, as I'm overall feeling quite good and I'm able to life a rather normal life again (...with diet restrictions, however).

I couldn't find information or ressources in this forum about how to further improve one's digestion after having had C Diff, but if there is, it would be nice if someone could post a link.

Otherwise, thank you all very much for your support again and good luck to you all!!

beth22
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Re: (Partial) Success with Psyllium husk, next steps need to taken

Postby beth22 » Mon Jan 30, 2023 2:09 am

Improving digestion seems to be very individual, but many have posted that following a low FODMAP diet helped them. Most have trouble with foods containing fiber and dairy. I was like that. Probiotics help some and make others worse. I would introduce one new food at a time and see how you do with it and start with a small amount. You might also wish to keep a food diary to have a record of what agrees with you and what does not.


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