posted
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?
-------------------- Dxd ALS 3/2010 Dxd cllinical Lyme 4/2010 Positive for Protomyxzoa but absolutely nothing else in Igenex Posts: 417 | From central ct | Registered: Apr 2010
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jackie51
Frequent Contributor (1K+ posts)
Member # 14233
posted
Can't the C diff be treated?
Don't give up just yet. Someone will come on here who has been through this.
Posts: 1374 | From Crazy Town | Registered: Dec 2007
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
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.
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.
BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
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.
randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
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.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
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.
lululymemom
Frequent Contributor (1K+ posts)
Member # 26405
posted
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.
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
-------------------- LAXlover Posts: 371 | From Northern Baltimore Area | Registered: Apr 2010
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Camp Other
Unregistered
posted
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.
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
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.
posted
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
-------------------- Sick since 10/2001. Tested CDC positive for Lyme 10/2008 through Quest and Igenex. Started treatment 1/2009 with LLMD. Lyme, Erichilosis, Chlamydophila Pneumoniae, Q Fever, Strep Syndrome and probably a few others I am forgetting. Posts: 451 | From Virginia | Registered: Feb 2009
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posted
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
-------------------- Sick since 10/2001. Tested CDC positive for Lyme 10/2008 through Quest and Igenex. Started treatment 1/2009 with LLMD. Lyme, Erichilosis, Chlamydophila Pneumoniae, Q Fever, Strep Syndrome and probably a few others I am forgetting. Posts: 451 | From Virginia | Registered: Feb 2009
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posted
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.
-------------------- Dxd ALS 3/2010 Dxd cllinical Lyme 4/2010 Positive for Protomyxzoa but absolutely nothing else in Igenex Posts: 417 | From central ct | Registered: Apr 2010
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posted
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!
-------------------- Dxd ALS 3/2010 Dxd cllinical Lyme 4/2010 Positive for Protomyxzoa but absolutely nothing else in Igenex Posts: 417 | From central ct | Registered: Apr 2010
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posted
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"
-------------------- Sick since 10/2001. Tested CDC positive for Lyme 10/2008 through Quest and Igenex. Started treatment 1/2009 with LLMD. Lyme, Erichilosis, Chlamydophila Pneumoniae, Q Fever, Strep Syndrome and probably a few others I am forgetting. Posts: 451 | From Virginia | Registered: Feb 2009
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Tammy N.
Frequent Contributor (1K+ posts)
Member # 26835
posted
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.
Posts: 2238 | From East Coast | Registered: Jul 2010
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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).
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