Dr said risk of antibiotic trial for 2 mos IF tests come back neg is c difficile which can cause mega colon in cases.
While this is more common in elderly people in hospital with lowered immune systems and mostly on IV antibiotics, he has seen it happen to someone taking it for 5 days and he was talking about risk with oral antibiotics.
I am wondering if you have all heard of this? Does this happen often taking antibiotics long term?
He said Lyme itself will not kill you - c diff can and other possible risks include liver or kidney and many other problems.
I thought complications from Lyme COULD be fatal - especially neuro Lyme - meningitis and encephalitis possible.
Is it NOT ever deadly? I think it is rare but the conditions Lyme in the brain and body can cause can be severe and disabling. I am awful now.
Can you all pls let me know how often you hear about someone getting c diff - more importantly MEGA COLON???
Because once it causes mega colon, you have to have your colon removed and get that bag. It's like I would have to take the risk I think but I am one who always gets the worst possible side effects normally and unfortunately.
Please respond to this post! Thanks!! This is serious and I am really wondering about this.
:)thanks
Posted by TF (Member # 14183) on :
In the approximately 6 years I have been in contact with/advising numerous lyme patients, I have never heard of a case of C diff or mega colon resulting from high dose combination antibiotic therapy.
However, I heard of C diff in a coworker who did NOT have lyme disease.
This is one of the things doctors who are uneducated about lyme disease and its treatment are told by the Infectious Disease Society of America (IDSA). They believe lyme is rare and easily treated and have educated our country's physicians this way. Sorry, but this is not true.
You already know that lyme disease is a bigger deal than what run-of-the-mill doctors believe it is. They haven't been taught that it can destroy your intellect, cause unbelievable fatigue and pain, etc. That's what OUR doctors know to be true.
So, the cure is worth the slight risk of C diff. that comes with any antibiotic treatment. If you are with a good doctor, none of this should even happen as you will be communicating with the doc if you begin to develop any suspicious symptoms.
To ease your mind, why not read what the Burrascano Lyme Treatment Guidelines say on the subject. Burrascano is the lyme guru in the U.S. and even in the world. Here is a relevant quote from p. 22:
"SAFETY Over two decades of experience in treating thousands of patients with Lyme has proven that therapy as described above, although intense, is generally well tolerated. The most common adverse reaction seen is allergy to probenecid. In addition, yeast superinfections are seen, but these are generally easily recognized and managed. The induction of Clostridium difficile toxin production is seen most commonly with ceftriaxone, but can occur with any of the antibiotic regimens mentioned in this document. However, pulsed dose therapy and regular use of the lactobacillus preparations seems to be helpful in controlling yeast and antibiotic related colitis, as the number of cases of C. difficile in Lyme patients is low when these guidelines are followed. Be sure to test stool for both toxin A and toxin B when evaluating for C. difficile colitis."
Just want to let you know that I had lyme, babesiosis, and bartonella undiagnosed for about 10 years. I completed my lyme treatment over 4 years ago, and I am still symptom-free, enjoying my life--the same life I had before lyme disease.
This can be you too. Please do not be paralyzed by fear and let lyme disease steal your entire life. It stole 5 years of mine.
Posted by feelfit (Member # 12770) on :
Karmaa, Ditto to everything that TF has said. She knows her stuff.
Do take probiotics and saccromyces boulardii if you are on antibiotics to avoid any complications.
Feelfit
Posted by timaca (Member # 6911) on :
I did have C. difficile for 11 long months. It is no fun. Do take S. boulardii (Florastor) and probiotics daily to help prevent C. diff.
I am back on antibiotics now, but do take probiotics as above to hopefully prevent a C. diff recurrence.
Best, Timaca
Posted by WildCondor (Member # 434) on :
There are many many cases of c.difficile resulting from antibiotic treatment for Lyme. I got it after 5 years of antibiotic use and it was very difficult to treat. It can be worse than Lyme folks! Once you get c.diff, it is very difficult to ever treat your Lyme ever again.
I know people who have died from it, and yes it can cause toxic megacolon. A friend of mine with Lyme had to have his colon removed because of it, and believe me, its not a very nice quality of life. Make sure you take Florastor to protect you from getting c.diff when on antibiotics.
C.diff is without a doubt deadly and the number of deaths is rising in recent years. There is a new deadly strain of c.diff that produces more toxins and is running rampant in hospitals and nursing homes especially. it's referred to as a superbug!
The risks your doctor explained are indeed accurate.Google "c.diff superbug"!
be VERY careful on antibiotics! Lymies get it all the time, and have to stop antibiotic treatment. it is usually treated with Flagyl or oral Vancomycin (IV will not treat c.diff)
Posted by minimonkey (Member # 8693) on :
I had c diff this past year, after 3 years on abx. It was horrid -- 9 months of severe distress, (about 5 months of weakness and intolerance to solid food) and I lost so much weight that people assumed I was anorexic.
I finally beat it with bentonite clay -- it was a post on this forum that tipped me off to this as a remedy, and I wish I could remember the original poster, so I could thank her.
That said, in my case, it was still worth it to be on the abx -- my quality of life is dramatically higher than before treatment, so it was definitely a risk worth taking. My lyme was truly disabling me before the abx, and now I am functioning pretty well.
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