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can't do abx or abx herbs, what to do (c. diff.)?

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Posted 6/2/2013 1:27 AM (GMT 0)
Ok,  I just wrote an entire post and lost it.

Will rewrite it after I wash a few dishes.

Come to think of it, I'm getting tired.

Margaret

Posted 6/2/2013 1:36 AM (GMT 0)
teragram,

I've done that a few times before myself!!! I know how deflated you feel when you pour all of your energy and focus into a lengthy post, and it disappears. The fatigue that sets in is debilitating at that point!

I am anxious to see your repost at a later time.

Don
Posted 6/2/2013 1:58 AM (GMT 0)
I will. To bed, ho!  To think I used to stay up until 1 or 2 a.m., sometimes later (a super bad habit and sleep problems).

I'm too tired even to have sleep problems now.  I like to say, "Every silver lining has a cloud," or is it, ummm, said another way?    :-)

Posted 6/2/2013 4:40 AM (GMT 0)
It took several lost posts and the ensuing exhaustion to teach me to "highlight and copy" what I wrote before clicking the "submit" button. That way if I lost the post, all I had to do was re-click "reply", then "paste" what I'd copied into the reply window and click "submit" again.

Just a tip but, it'll save you a great deal of frustration. :)
Posted 6/2/2013 5:03 AM (GMT 0)
Ohhhhhh!

Margaret

Posted 6/2/2013 5:28 AM (GMT 0)
*nudge, wink*

I'm just here to help. ;p
Posted 6/2/2013 8:14 PM (GMT 0)
Thieves is a fantastic essential oil blend. Cassias is highly active against Lyme. You may also consider adding neem if you explore essential oils. Wild orange will help you detox any die off.

As for c. Diff, bacillus coagulans is a fantastic probiotic specifically for c diff. Some also really find help from s. Boullardi.
Posted 6/2/2013 10:08 PM (GMT 0)
Still feeling really yucky today. So much for the long post I wrote last night. Then I ate icecream (non-dairy, but still . . . . ), and today I'm having a c. diff. flare.

My LLMD recommended VRI 3, which has dairy in it (not good for me) and s. boullardi, which I would love to get, except fermented products and yeast cause migraines in me. I can't win for losing. I'm already getting migraines from stress, along with Coconut Kefir and Coconut Water Kefir.

I'm going to look into the bacillus coagulans. Does it contain dairy? Maybe I should just live with having migraines for awhile. They're horrible, but they have got to be better than c. diff.

I need to start making a list of all this stuff, and then get off the computer and start ordering (well, get back on the computer to start ordering.)

I still have to be careful with anything antimicrobial. Is Cassias antimicrobial?

Thanks! M
Posted 6/3/2013 12:19 AM (GMT 0)
C diff loves sugar.

Cassia is cinnamon.

Thorne bacillus coagulans is advertised as dairy free.
Posted 6/3/2013 12:22 AM (GMT 0)
Oh, and all essential oils talked about in this thread and referenced are anti microbial.

As someone who has had digestive issues as their primary complaint and has battled c.diff, I respectfully disagree with your digestive coach. Im fascinated by the idea of a digestive coach as I've never heard one mentioned in any IBD forum. Is this a naturopath? Or what exactly makes them a digestive coach?
Posted 6/3/2013 12:26 AM (GMT 0)
Last thing.. Lol...Teragram, look into genetic polymorphisms effecting detox. Specifically MTHFR related ones. looking at your sig and your symptoms if you haven't been tested for them, you definitely need to explore it.
Posted 6/3/2013 12:49 AM (GMT 0)
Since I am positive for Lyme, I understand the disagreement; it's just that the c.diff. almost--and still may--kill me. It was caused by abx, as maybe yours was. As horrible as Lyme is, I never ever want to go through the c. diff. thing again. What that means is that I want to take all possible risks out of the equation. Even my gastroenterologist said that any kind of abx., medical or otherwise, would put me at risk.

Having said that, I can feel the symptoms of Lyme starting to increase since I went off abx. But there is nothing I can do, except a lot of research.

The digestive coach is someone who gives (well sells) a protocol for doing fecal transplants yourself. Normally, I wouldn't do it myself, but would have a physician do it. Many gastroenterologists were performing these, as you may know, until the FDA put a "hold" on the process, which essentially requires physicians to do all kinds of complicated paperwork so as to apply for "a license" to do the procedure. Right now, no one is doing it.

Rest assured, I'm reading medical journals, etc., and trying to adhere to physicians' guidelines as much as possible, by screening my donor, etc.

I've exhausted all my other options, apart from taking something like the s. boulardi: Probiotics, etc. I could fly out of the country, but haven't found anyone outside of the US, except in Australia (!!) Also, how would I find a donor in another country?

M

M
Posted 6/3/2013 12:52 AM (GMT 0)
I'm happy the bacillus coagulans is dairy free! And yes, c. diff., along with many bacteria, feed off of sugar. I was pre-migraine, and not in my right mind at all.

Otherwise, I rarely eat sugar since dx.

M
Posted 6/3/2013 10:08 PM (GMT 0)
It isn't nessecarily the Lyme that makes me disagree. It mainly the c. Diff.. And I'm not a big rx abx fan, so herbs and supplements are always my preference. My dxs before lyme were all ibd related so im very familiar with bowel problems unfortunately. Yes, my c.diff came after abx. Yes, I'm familiar with fecal transplants.. I think there is a doc outta mayo still allowed to do them for c. Diff. I don't really trust gastros after 30 years of their incorrect treatment..

S boullardii is a key probiotic for c.diff as is bacillus coagulans. I hope you can try them. I won't go into how I addressed the c.diff as it was a cobbled together treatment combining several different things and I can't be sure on which ones were the biggest help.

I do wish you a ton of luck. I'm sorry you are going through this. C. Diff SUCKS. I've never heard of anyone getting c.diff from an herbal abx protocol... Not to say that it hasn't happened but all cases I've heard of have been after rx abx or after biologics. herbs were a large part of my personal recovery. But everyone is different and I hope you find a treatment plan that works for you soon.
Posted 6/3/2013 10:27 PM (GMT 0)
No that's relevant information; I agree.  I'm just not sure what to order first.

I'm def. going to try the probiotics you're suggesting, probably first thing, as soon as I eat my sweet potato (ha ha, but seriously)--even if they cause migraines.

I hope you don't mind my asking, but can you tell me your cobbled up treatments?  Did you, by any chance, use probiotic enemas?  Just curious.

Do you know who the doctor out of Mayo was?  I'd still rather do it with a doctor than without (I think).  I don't know if I can cover enough intestinal ground if I do it myself.

I might try one herb (or oil) at a time, and see how I react, and I may also try some heavy-duty treatments for the c. diff.  The abx aren't working (I mean regular abx). 

Does anyone know if Tinidazole works for Lyme?  I'm trying to figure out if I'm herxing like crazy, or if it's the actual Lyme making me wacko.  I'm using the Tinidazole for c. diff.

Did you try the SCD diet by any chance?  It seems to me to be counter-intuitive, given the cabbage, broccoli, onions (oh yuck), and, of all things, aspartame?

Do you know if peanut butter is ok, regardless?  I don't know how to stop weight loss.

Thanks soo much for the info.      M

Posted 6/3/2013 10:28 PM (GMT 0)
As far as anti-microbial herbs, I'm just scared, that's all (of anything anti-microbial).

Margaret
Posted 6/4/2013 3:17 AM (GMT 0)
I got c. Diff after a round of abx in hospital. A secound round of abx didnt work either. I used the purge the digestive track theory. First, 3 colonics over 10 days while taking antimicrobials and oral probiotics..then oral Epsom salt flushes every 7-10 days for the first 6 weeks.

In the beginning, I did enemas daily ...1 high volume enema, followed by a probiotic retention enema. I only used bifido strains in my enema and took multiple strains orally including vsl #3, bacillius coagulans, s. Boullardii, pb 8, renew life critical care.. after I started stabilizing I just did probiotic retention enemas every other night. Then tapered to a couple times a week then 1 x a week.. The process took somewhere between 12-16 weeks, I honestly don't remember the exact number of weeks. I also did use colloidal silver in the beginning for the high volume enemas and also turmeric. Colloidal is highly controversial but I was desperate.

For the antimicrobal, I used oil of oregano and olive leaf extract. I put the oil of oregano in empty gel caps myself. 5 drops of very very strong oil of oregano with 83% cavaracol. 1500 mg olive leaf extract in capsules standardized to at least 12%.. most of the time I used 20% oleurpin and 1 scoop of lauricidin 3x per day ( before meals). I used psyllium to keep things scrubbed and bulked and move the spores out of my intestine.

I ate paleo, but tried to focus on well cooked veggies as the backbone, not meat. I ate absolutely no sugar.. But plenty of nut butters like peanut and almond (peanut isn't paleo but I ate it anyway). I ate lots of well cooked bacon... Avocados..sautéed veggies liberally in either coconut oil or evoo.

I can't find the name of the mayo doc, but I'll look through the threads on the UC board. In NY, Dr. Lawrence Brandt is approved.

Post Edited (PathogenKiller) : 6/3/2013 9:25:29 PM (GMT-6)

Posted 6/4/2013 4:30 PM (GMT 0)
I think it might be Dr. Sahil Khanna doing the FMT still at mayo in Minnesota and Robert Orenstein, D.O. in Arizona. Im not positive, but I think atleast one of them is still approved.
Posted 6/4/2013 5:03 PM (GMT 0)
Thank you so much for the very valuable information.  I'll see into the colonics.  I do know that even though c. diff. causes bad diarrhea, enemas often help, since they flush things out.

Does the probiotic retention enema give you sort of a herx?  It did me, and I didn't repeat it, but I might start doing it again.

I've always heard that nuts cause digestive upset, so how were you able to eat almond butter?  I do eat peanut butter, but if  the amounts of p.b. are too large, it (the p.b.) causes a c. diff. flare.  Also, fatty foods upset my stomach, so I'm not sure how you ate bacon.  In restaurants, I usually use a napkin to absorb the fat off of, say, hamburgers.

Epsom salt sounds a little harsh.  I know people consume it as a laxative, but wouldn't a harsh laxative be harmful (possibly)?  As far as fiber, psyllium is completely out for me, but I tried Acacia (Heather's Tummy Fiber) and it caused flares as well.

My dog was recently dxed with Lyme Disease by the local vet., and after having had bronchitis and an allergic reaction (all treated with steroids), I think she may have contracted c. diff. from me.  shakehead

  So I have to use my protocol with hers, and I have to find out which herbs she can and can't take, bc. she's having problems with her liver right now.  She's on Doxy. at the moment.  Of course, neither of us is going to be completely well until both of us are treated, bc we'll keep transferring it back and forth.

Does the c. diff. affect your brain?  I'm not sure if it's the c. diff. abx., or the c. diff. itself, but something is making me feel depressed and disoriented, more so than with Lyme.  And now my dog seems to be depressed and disoriented as well.  Holy Cow!!

Now that you've been so kind as to give me your c. diff. protocol, I can't remember if you gave me your complete Lyme protocol or not.  I'll go back and look through the thread.  Otherwise, I would love to know that as well.

I'm going to use my "less-traveled" email as a link in my profile if you want to email me (but obv., that's up to you).

Thanks again, Margaret

Posted 6/4/2013 5:23 PM (GMT 0)
I have a two genetic mutations that effected my ability to detox and caused me to herx no matter what I did so it was very hard to tell what caused the herxing. Im one of those people who believes you must fight through the herx if at all possible and most people get atleast a little worse before they get better. The best thing you can do is concurrently focus on detox.

I encapsulated the epsom salt.. yes, it causes diahreah. I wanted to flush my system repeatedly I actually found it more gentle then any bowel prep I had done before, which surprised me. I drank lots and lots of water.

Everyone is different but I just didnt have any problem with nuts that were ground or soaked and ground, I did not eat them whole. As for bacon, it needed to be well cooked as to not be overly fatty, but again, it didnt give me problems. It was not the first foods I started with. I drank lots of broths in the beginning and a very light diet. I was nowhere near underweight tho, so I could tolerate a weight flux.

I do not know if c. diff directly effects the brain. I do know systemic illness does, whatever that illness is. Again, I recommend you look into the MTHFR genetic polymorphisms.

I have Lyme, mycoplasma, a pseudofungi/mold/yeast overgrowth, intestinal dysbiosis and systemic chronic strep so my protocol addressed all of those things, not just lyme. I also have ulcerative colitis so I have to rebuild my gut too. I shy from posting my protocols because I believe all of us are so individual and Id hate for anyone to follow a protocol tailored to me when they should not be.

I can tell you what Im currently on:
Methylcobalamin
L-Methyltetrahydrofolate
BH4
Co-Q10
L-Carnitine
Olive leaf extract
Monolaurin
Anatamul
Triphasa
Prescipt Assist
Bacillius Coagulans
VSL #3
Bliss K 12
Sodium Butyrate
Pau D arco
Berberine
Essential oils
Devils Claw
Neem
N-Acetyl Cysteine
Serrapeptase
Digestive Enzymes
Thorne SF 722
Sumenta
Modified Diet

I do not take all of them every day.
Posted 6/4/2013 5:30 PM (GMT 0)
Oh, I don't follow either prominent individuals or even protocols blindly. I will tailor whatever you're using to my individual needs. Plus I like to start slowly. I make my own decisions,so don't worry. I would need to do research first.

One other question (sorry), but from which company do you order your probiotics?

Thanks!!!!! Margaret
Posted 6/4/2013 6:57 PM (GMT 0)
For the implants I started with ultimate flora bifido max by renew life I got locally at my health food store and then moved to Custom Probiotics, 4 strain bifido powder.
Posted 6/7/2013 4:46 AM (GMT 0)
Magoo, my new gastroenterologist approved my doing the f. transplant at home, as long as I followed the proper protocol.  He said he was telling me this "off the cuff," bc. otherwise he might be held liable.  He said that since the FDA had stopped the procedure, he understood a lot of patients didn't have much of a choice.

Margaret

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