I have lyme and ALS. I've been responding to ceftriaxone and my llmd just added a few more meds.
My GI just can't take it. I may have c diff and am waiting for the lab results.
Is this the end of hope for an ALS patient? Can I ever go back on abx again?
Posted by apljack (Member # 14233) on :
Can't the C diff be treated?
Don't give up just yet. Someone will come on here who has been through this.
Posted by BoxerMom (Member # 25251) on :
I treated my C.diff and resumed antibiotics.
I treated the C.diff with Flagyl for 6 weeks. Then I took an herbal product for 4 months to make sure it didn't come back. I resumed antibiotics after the 6 weeks of Flagyl. I also increased my probiotics.
I have never had a recurrence of C.diff, and I've been on antibiotics ever since.
Please don't despair. It's never the end of the line. We just keep chuggin' along.
Posted by randibear (Member # 11290) on :
wow, i'm encouraged. i have enough biaxin for probably a year but have been afraid to take it, and i desperately need to start treatment again.
i'm taking a ton of probiotics but this stuff sounds interesting.
how much did you take? can you take it with buhner? how about vitamins? how much?
details, girl...
Posted by BoxerMom (Member # 25251) on :
I started with 1 cap 1x/day to see how I would respond. Since it has Artemisia annua, I thought I might herx for Babesia.
I tolerated this product very well. It did increase my herxing at first. I quickly worked up to 2 caps 2x/day and remained at that dose for 4 months.
You could take this with Buhner herbs. No problem. Again, it might increase your herxing.
Posted by randibear (Member # 11290) on :
could you take it with flagyl and biaxin, which is what i'm having to take for diverticulitis right now.
Posted by BoxerMom (Member # 25251) on :
Absolutely.
Posted by Remember to Smile (Member # 25481) on :
Eeek! Concerned about Artemisinin use!
Pulsing is required. Our bodies begin to manufacture an enzyme in response to Artemisinin.
Artemisinin is a potent herb that must be carefully dosed to avoid problems.
Under the care of successful ILADS-active LLMDs, some patients are directed to take Artemisinin 3 days on/4 days off, while others take for 3 weeks on/1 week off for months.
This is not an herb to take without much research and wise, professional guidance. Please search above for some of the many threads about Artemisinin dosing.
Also of vital importance is the quality of the source of this herb.
Best wishes, Smile
Posted by Remember to Smile (Member # 25481) on :
quote:Originally posted by 2young2die: I have lyme and ALS. I've been responding to ceftriaxone and my llmd just added a few more meds.
My GI just can't take it. I may have c diff and am waiting for the lab results.
Is this the end of hope for an ALS patient? Can I ever go back on abx again?
Dear 2young2die,
I have hope for you, as do others here.
You have been responding to ceftriaxone!
C. diff isn't called C. impossible! Of course it's difficult, but you're intelligent and we're here to support you.
Maybe you & your LLMD just got a bit over-excited and added in the additional meds sooner than your bod was ready?
Be gentle with yourself now. We're praying for your healing.
Visualizing the good guys running the difficult guys right out of you!
Love, Smile
Posted by BoxerMom (Member # 25251) on :
Artemisinin is a constituent of the whole herb, Artemisia annua. Any plant compound is going to be stronger than what is found in the same amount of the whole herb.
It's true that Artemisinin is most effective when taken in short courses. According to Dr. S in FL, Artemisinin produces an enzyme that actually lowers blood concentrations of itself. It has also been known to increase liver enzymes and to contribute to pathogen resistance when used by itself.
The whole herb, Artemisia annua, does not have these problems. It is also not as strong as the constituent, Artemisinin. When combined with other herbs, whole herbs have shown no evidence of contributing to pathogen resistance. In fact, whole herbs used with antibiotics have been shown to decrease problems with antibiotic resistance.
The product I mentioned contains the whole herb, Artemisia annua.
It is simply a suggestion. Of course, you are wise to work with a qualified healthcare provider.
Posted by randibear (Member # 11290) on :
i've been researching this online. unfortunately it sounds dangerous and i'm a known coward!!
one site said continued use can use convulsions and death...
i wish i knew more about herbs.
Posted by BoxerMom (Member # 25251) on :
You should only use products with which you are comfortable.
There is LOTS of misinformation regarding side effects of herbs and supplements. Much of it is deliberate. The medical industry would love to stamp out the use of natural products.
If I convulse and die, I'll call you first!
There are lots of options for C.diff. I just wanted to offer one suggestion.
Posted by lululymemom (Member # 26405) on :
There are options with this condition. Some are controversial such as this one but they are very successful. This is a story involving a Doctor that I have seen in Calgary for Lyme treatment.
What do you take for probiotics now?
Posted by LAXlover (Member # 25518) on :
2young2die,
Probiotics can make all the difference!
I have Lyme & co. and my 12 year old daughter has Crohns Colitis therefore, between the 2 of us, we have tried NUMEROUS probiotics.
Please try our favorite! It has been amazing for the both of us. Daughter takes 9 a day and I take 6-9+ a day, depending on how my gut feels.
It's called: PERQUE Digesta Guard Forte 10 (150 caps per bottle) My LLMD sells it and I've also seen online.
Never give up.
-LAXlover
Posted by Camp Other (Member # 29797) on :
LAXlover, thanks for the post to that probiotic. It looks pretty potent and has magnesium, which is something I need more of lately.
Do you know where you can get the best price, and how this compares to Jarrow products? I usually end up buying what I can find that's live probiotics on the refrigerated shelf at the hippie organic store near me.
Posted by BoxerMom (Member # 25251) on :
I alternate Researched Nutritionals brand Prescript Assist Pro with Klaire Labs brand Ther-biotic Complete. I take 3 caps 2x/day.
I always take Thorne brand Sacro B, 2 caps 2x/day.
Twice a week I take a packet of Pharmax brand HLC Synbiotic Intensive.
I also love Klaire Labs Galactomune. It's a prebiotic blend for GI immunity. It does NOT contain glutamine, which can be problematic for the nervous system.
I hope this helps.
Posted by BoxerMom (Member # 25251) on :
2young - There are lots of herbs that treat C.diff. Do a Google search.
I also took a Chinese herbal formula. I couldn't stick with it, due to the taste, but I could tell it was working.
I treated with herbs for 4 months because I am confident with herbs and I did NOT want a relapse. I think 1-2 months would have been adequate.
Posted by Pam08 (Member # 19203) on :
I tested positive for C. diff before ever even starting antibiotics. No clue how that happened! I also didn't have any symptoms of it though so my case may be different.
Anyhow...I cleared that by taking oral vancomycin. Then I started antibiotics. I have been on abx for 2 years now and haven't had a recurrence of the C Diff at all. KNOCK ON WOOD!!
My LLMD uses Saccharomyces Boulardii to prevent C Diff. She says since she has been having patients take this while on abx she hasn't had anyone have the C Diff return.
She has me take anywhere from 2-4 pills of the S Boulardii a day depending on what abx I am on. She also has patients take plenty of probiotics as well in addition to the S Boulardi.
So I think there is hope for you. I don't think that C Diff has to be the end of treatment for you.
Take Care! Pam
Posted by 2young2die (Member # 25434) on :
Pam08- what do you take for probiotics and where do you buy it?
Posted by Pam08 (Member # 19203) on :
The S Boulardii I take is by Klaire Labs. I have increased from 2 pills a day to 4 pills a day recently since I switched my abx.
The other probiotics that I take I rotate around every month or two so that they remain effective.
Right now because I started Clindamycin (which is known for causing C Diff) I am taking 3 different probiotics a day (1 pill each) in addition to the S Boulardii. I may increase that even more if it is needed.
Here is a list of the probiotics that I rotate between:
-Theralac -VSL #3 -Ther-biotic Complete (by Klaire Labs) -ProbioMax (by Xymogen) -Ultimate Flora Critical Care (by Renew Life) -Fivelac (by Global Health Trax)
I believe most of these can be bought otc.
I really hope you can continue treating after the C Diff.
Good Luck and Take Care! Pam
Posted by 2young2die (Member # 25434) on :
Thank you everyone!!! I just stopped my rocephin because the diahrrea was so bad. I'm really allergic to it so it will be a challenge to start up again but I'm too sick to continue it right now.
These suggestions give me hope that I can tolerate antibiotics at some point again. My llmd says with an ALS dx, I will have to be on drugs the rest of my life in order to survive.
I'm lucky that respond to them.
Posted by tickalert (Member # 7033) on :
I had C Diff for a long time and finally resolved it by taking Gastro Complete and Sea Buckthorne from New Mark.
These products are the only thing that helped my C Diff and I tried so many things over the last 3 years.
My Dr. also tested me for food allergies and found I had numerous food allergies with food.
I'm feeling better already, thanks to all these great probiotic suggestions. I have 2 prominent lyme doctors but neither knew much about probiotics.
Our greatest strength in the fight against Lyme is each other!
Posted by Energyman (Member # 29178) on :
What are the symptoms for C.diff?
Posted by Pam08 (Member # 19203) on :
So glad to hear that you are already feeling better!
Having each other really is our greatest strength. I have learned SOOO much from others.
Energyman...I didn't have symptoms when I had it but here is the symptom list from the Mayo Clinic website.
quote: "Some people who have C. difficile never become sick, though they can still spread the infection. C. difficile illness usually develops during or shortly after a course of antibiotics. But signs and symptoms may not appear for weeks or even months afterward.
The most common symptoms of mild to moderate C. difficile disease are:
* Watery diarrhea three or more times a day for two or more days * Mild abdominal cramping and tenderness
In severe cases, C. difficile causes the colon to become inflamed (colitis) or to form patches of raw tissue that can bleed or produce pus (pseudomembranous colitis). Signs and symptoms of severe infection include:
* Watery diarrhea 10 to 15 times a day * Abdominal cramping and pain, which may be severe * Fever * Blood or pus in the stool * Nausea * Dehydration * Loss of appetite * Weight loss"
Posted by Tammy N. (Member # 26835) on :
2 young -- I wanted to mention saccharomyces boulardii. I'm not sure if someone mentioned it above. A recent doc suggested I start taking it. I put a post out to see what others had to say.
This is what abxnomore shared with me- Any one on long term ABX should be on saccharomyces boulardii.
It is a type of yeast, so yes ABX won't kill it but it functions as a probiotic for our purposes. You don't need to get it at a pharmacy.
You can get it on line or at vitamin shoppe. Jarrow makes one that is less expensive than Florestor.
Many use it to avoid gettting C. difficile.
Posted by seibertneurolyme (Member # 6416) on :
Adding another link to this thread. Here is an herbal alternative for treatment of c diff.
Hubby has never had c diff thankfully, but he will be taking IV clindamycin shortly which has a bad reputation of causing this problem. The LLMD who suggested the med told him to increase his s. boularrdi dose from 4 capsules daily to 6 daily (we use Jarrow brand).
Bea Seibert
[ 01-24-2015, 01:56 PM: Message edited by: seibertneurolyme ]
Posted by mattnapa (Member # 26414) on :
Marnie- Thanks for mentioning the fecal transplant stuff.
Wow I never expected to type that into a message board.
I have heard about it once before, and yes I think it tests the limits of what we will look at.
But truth can be stranger than fiction
I see in the search feature that there has never been a thread on it here.
I think it needs one. I might do it if you, understandbly, do not want to
![[group hug]](graemlins/grouphug.gif)