posted
Been losing weight [8 lbs in two weeks]....some diarrhea....not REAL bad. Pain in the area of my gallbladder. [no gallbladder]
However, my GP poked around on my gut and found I was very sensitive in the "ascending colon"...near where my appendix would be [not there].
So....he gave me vancomycin, (thinks it's c.diff) but told me to come back in one week if that didn't help. He will then do a CT scan and look for the possibility of a stone in my biliary duct.
What say you experts??
ps... What probiotic protects against c.diff? Makes me mad because I was trying to purchase some locally about 2 months ago, because for some reason I was worried I would get c.diff.
I think someone said Florastor had s.boulardi in it, but I don't know any place to buy it.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
| IP: Logged |
sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Lymetoo, sorry to hear that you are having such a rough time. I hope the vanco helps:)
I'm no expert and I cannot diagnose you but I can describe what i've seen.
Patients that i've taken care of with c.diff have had very explosive diarrhea. The most distinctive characteristic of all though is the smell. The smell is horrendous, very sicky, kinda sweet, cannot really describe it. It would linger with you.
Usually c.diff is diagnosed with a stool culture. Since your GP didn't order one you should take precautions to protect your family/friends.
Wash your hands throughly, scrub them. Antibacterials will not kill the c.diff, you have to manually wash it off. Also if you have more than one bathroom in the house you should use one and family use the other. Wash your laundry separately.
I don't know which probiotic in particular will protect against c.diff. I thought any probiotic, if you took enough, would help.
Take care Lymetoo and feel better soon.
Posts: 5237 | From here | Registered: Nov 2007
| IP: Logged |
posted
That's weird, Vemont! I asked at a large health food store and they had nothing with s.boulardi!! I think at the time I was unaware that Florastor was what I needed.
But....I'm concerned about Florastor causing more digestive upset. I've heard many complaints in that area.
Will check more stores tomorrow.
Thanks!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
| IP: Logged |
posted
I am also still having upper right abdominal pain in the gallbladder area. I had a negative ultrasound and hida scan. My ejection fraction was over 80%. I am not having the loose stools but am having nausea.
It has been keeping me up at night.
Do you notice if your pain is changed by eating?
Posts: 413 | From nj | Registered: Nov 2005
| IP: Logged |
AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
I use Sacromyces boullardii (sp?) by nutricology.
posted
I'm so sorry that this is happening, Lymetoo. Wouldn't Diflucan help C.diff? Not sure, but it seems like it would be a strong enough med to help.
Lets hope it's something way less than C.diff.
Hugs,
lifeline
Posts: 983 | From FL | Registered: Dec 2002
| IP: Logged |
posted
Pat....what's weird is that I quit taking Diflucan a few days ago when it seemed to make my pain worse.
That's when I thought maybe it was my liver or biliary duct or pancreatitis.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
| IP: Logged |
Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
I thought flagyl was good for c. diff...
I take one a week to prevent it.
I sure hope you get the kinks worked out soon.
You certainly deserve to feel better....what with months of sinus problems
And now this....
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
| IP: Logged |
randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
i had an attack of pancreatitis once. the pain was beyond anything i had ever had. i literally was doubled over screaming and couldn't unbend.
i spent a day and a half in the hospital on iv's. i lost a bunch of weight and couldn't eat anything but jello and water. never been sooo sick in my entire life.
i had c. difficile too and had constant diahhrea, anywhere from 5 to 10 times a day. my lower abdomen was so sore and it burned. two weeks of flagyl cured it right up.
check out that pancreatitis tho. the pain went straight through to my back.
i hope it's not it, i really do. a blood test to measure your enzymes will show if they are elevated, but they don't also go up. does that sound familar?
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
| IP: Logged |
posted
Sorry to hear your not feeling well. I've used Saccharomyces boulardii from NutriCology.
Kathy
-------------------- You never know how strong you are until being strong is the only choice you have. Posts: 807 | From South Dakota | Registered: Jul 2005
| IP: Logged |
posted
Hi TuTu. So sorry to hear you're going through this! (happy your sinuses are better though! )
I've had a couple bouts of 'refractory' c. difficile and have learned a few things along the way.
For me, the cramping was incredibly intense (more so even than the diarrhea). Like others have mentioned, I've heard that it has a characteristic smell...but I didn't experience that as much. My weight loss came over time when the diarrhea dragged on and on and my eating was more and more restricted.
As far as testing goes, you really need three negative tests in a row if you want to be sure you don't have it. It's probably just as well that your doctor is prescribing vancomycin, as that is the medicine that's most effective. Flagyl is supposed to work--but my two bouts occurred while I was on flagyl.
I've really stepped up the probiotics. I take MegaFlora twice a day, Theralac (twice a day), Saccharomyces boulardii + MOS three times a day,and Culturelle (lactobacillus GG)twice a day.
I usually buy mine online from iherb because their prices are good and they ship on ice.
I join the others with wishes that you don't have c. diff (or anything else troublesome for that matter!) Hang in there!! Posts: 136 | From North Carolina | Registered: Apr 2007
| IP: Logged |
daise
Unregistered
posted
I didn't lose weight.
C. diff has--guess what? Various strains. The superstrain is in hospitals.
Generally it's thought that healthy people can get rid of it before it proliferates.
Then there is we Lymies. I didn't have diarrhea, I had lose stools. Got tested. Took Flagyl, 14 days, twice. Didn't work. Tried the very expensive oral vancomycin for 15 days--not a week--and that took care of it.
By the way, a colonoscopy and an endoscopy by a very good gastroenterologist can be important for us in troubleshooting for trouble, like, infections they can see directly and then biopsy.
They can tell if there is a c.diff infection or not (down to a really, really low amount,) they can look for leaky gut syndrome, and more--more than just look for cancer.
I am really glad I had one! The blood test was still showing it when I went for the colonsocopy. I wonder if the blood test was wrong.
Any probiotic (plus a boulardii product)is fine, that is, there is no specific probiotic for c. diff.
Taking a few types at the same time is important, because you introduce different strains and also hedge your bets that atleast one product will be viable.
I have found that a number of probiotics off-the-shelf or off-their-refrigerated-shelf are actually not viable. I have a test for that, but probably can't mention it on Lymenet. PM me.
dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749
posted
Tutu,
I also get the Nutricology S. Boulardii from vitacost. I think it's good.
Why don't you get a stool test for C Diff Toxin A and B? I would have thought that doing that would be a good idea. Dr B used to say to do it 3 days in a row as you may not catch it in the first or second sample.
Do you have a fever? I thought that was another sx of C Diff(??).
DLL
Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
| IP: Logged |
DLL....I've had a slight fever off and on. Of course, my usual temp is like 97 - 98!
Thanks, Dakota's mom!
hugs to all!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
| IP: Logged |
map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
I hope you are using that rife machine on some possiblities???? Email or PM me if you need some freqs numbers?
Sorry to read this thread. You're getting another lesson in it all. Sorry, it is you.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
| IP: Logged |
randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
no sweetie, it certainly doesn't!!! pancreatitis is one, like lyme, that is not well understood by the medical community.
i have a friend and it took her 7 years to get diagnosed.
go look for pancreatitis message board. i think there i one called carole something or other. they have a ton of information.
there is mild and chronic pancreatitis. and yes it goes to the back and can be on the right or left side.
gezzz, i hope it's not.
even test for it, called an ercp, can bring it on.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
| IP: Logged |
Truthfinder
Frequent Contributor (1K+ posts)
Member # 8512
posted
Well, Lymetoo, for the past couple of months, I've been having similar symptoms to yours..... although I haven't lost weight (figures) and I have pressure in the area of my liver at times (can't really call it pain exactly).
Well, I'm thinking more along the lines of Giardia than C. Diff..... I swear, its just too easy to pick this nasty stuff up anymore. My hands are really chapped from washing them so much - I really don't want to pass this on to my pets or anyone else.
I haven't wanted to treat it with homeopathics simply because that means I have to stop the remedy(ies) I'm on and do a complete switch to something else..... I can't tell you how many zillion times I've had to do that already......
I hit my `problem' with 9 days of Oregano Oil (softgels - not the raw oil) and that definitely helped. I probably should have done it a full 2 weeks but hate risking die-off of friendly flora.
I did order some S. Boulardi but it won't be here for a few days.
I'll need a few more days to decide how effective the Oregano Oil really was. If I still have problems, I may go have my stool checked, although it sounds like they can miss seeing this stuff!!! I'd sort of like to know what I have before I kill it.
Oh, another thing - have you had any trouble with your eyes - like where they sort of burn and feel like you haven't slept in 2 days?
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
| IP: Logged |
posted
Tracy...what's up with the eyes?? I had red irritated eyes last week which sorta cleared up with allergy drops.
Pam....I just got my Rife machine back from a friend. Will run whatever I can think of.
UPDATE.......IT CAN'T BE C.DIFF........
Before Walgreen's could get the Vanco ordered my diarrhea stopped. Now we're iced in and I'm just not going to pick it up.
I couldn't possibly have C.diff then, right?????
My access to the internet may be iffy for awhile. They were supposed to set up our internet, Dish, and phone today, but the weather was too bad.
Now they say we have to wait until NEXT Wednesday!!!!!!!!!!!
Hubby managed to get on through Wi-Fi.... It's come and go...WE're going nuts over here....
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
| IP: Logged |
WildCondor
Unregistered
posted
You have to do 3 stool tests in a row and it has to be a diarrhea sample. Get them to the lab quickly and tested for toxins A& B. False negatives are very common. You can have c.diff without diarrhea too.
Don't mess around with Vancomycin if you do not need it, it is a very powerful drug. Flagyl is usually used first.
posted
up
Posts: 96223 | From Texas | Registered: Feb 2001
| IP: Logged |
Truthfinder
Frequent Contributor (1K+ posts)
Member # 8512
posted
Thanks, Wild Condor - good grief, what a process!! And they can still miss C. diff.?
Sorry about your computer issues, Lymetoo.
Well, this is interesting, ..... I had a rather normal b.m. this morning, too. ...... (could be the Oregano Oil.) My eyes seem a little better this morning but still don't feel quite normal.
According to Ayurvedic medicine, there is a direct connection between the LIVER and the EYES..... so, perhaps the eye issues really are related to the pressure in the liver and the loose bowels.
Uh, I know this falls into the gross category, but until today, my stools have been sort of fibrous and lighter than normal in color with a slightly yellowish tinge...... what I would classify as ``baby-sh*t brown'', although I am at a distinct disadvantage using that term since I don't have any children.
Lymetoo, did your stools have an odd color?
There seem to be a lot of posts lately about eye issues - wonder if there is some bug going around. I know there are actual `outbreaks' of Giardia in the population, for instance.
Well, I guess we wait and see....
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
| IP: Logged |
"Bell's Palsy of the Gut" and other GI Manifestations of Lyme and Associated Diseases
Virginia T. Sherr, M.D.
PRACTICAL GASTROENTEROLOGY
April, 2006
SUMMARY
Bell's palsy signifies paralysis of facial muscles related to inflammation of the associated seventh Cranial Nerve. Physicians may not realize that this syndrome is caused by the spirochetal agent of Lyme disease until proven otherwise. Whether it is a full or hemi facial paralysis, Bell's palsy is cosmetically disfiguring when fully expressed. Sudden loss of normal facial expression terrifies patients who naturally fear they are having a stroke. When a smile is asked for, normal countenances warp into bizarre grimaces. The amount of tooth area exposed in this attempt to smile helps doctors evaluate the degree of paralysis and its change over time. In every case of Bell's, doctors need to carefully investigate by history, physical, and laboratory work every shred of evidence that might suggest the presence of cryptic tertiary Lyme, a serious multisystem, gut and neuro-brain infection even though about half of fully diagnosed patients have no evidence whatsoever of having had a tick-bite.
Gastrointestinal Lyme disease may cause gut paralysis and a wide range of diverse GI symptoms with the underlying etiology likewise missed by physicians. Borrelia burgdorferi, the microbial agent often behind unexplained GI symptoms--along with numerous other pathogens also contained in tick saliva--influences health and vitality of the gastrointestinal tract from oral cavity to anus. Disruptions caused by GI borreliosis (Lyme) may include, amongst many others, distortions of taste, failure of other neural functions that supply the entire GI tract--paralysis or partial paralysis of the tongue, gag reflex, esophagus, stomach and nearby organs, small and/or large intestines ("ileus"), bowel pseudo-obstruction, intestinal spasms, excitability of gut muscles, inflammation of lumen lining tissues, spirochetal hepatitis, possibly cholecystitis, dysbiosis, jejunal or ileal incompetence with resultant small intestine bacterial overgrowth (SIBO), megacolon, encopresis and rectal muscle cramping (proctalgia fugax).
In cerebral hypothalamic and pituitary centers, usual sites of borrelial disruptions of the brain's normal hormonal cascades, there are strong influences on human attitudes, ideation, and behavior relating to gastronomic issues. Newly discovered Lyme-endangered cerebral hormones and renegade cytokines regulate brain-gut interactions thus initiating behavioral tendencies such as anorexia or a failure of satiety with resultant obesity.
Ticks and other vectors of Lyme disease attract their own infections from many microbes, some known and some unknown (viruses, amoebas, bacteria, and possibly parasitic filaria), which they then also can pass on to humans. The GI tract is especially vulnerable to machinations of such co-infections as bartonellosis, mycoplasmosis, human anaplasmosis (HA), and human monocytic ehrlichiosis (HME). Syndromes exactly similar to Irritable Bowel Syndrome (IBS), Crohn's Disease, and cholecystitis, for example, may not have readily suggested a borrelial etiology to the diagnostician but Lyme increasingly is known to be a potential contributor to each.
All known Lyme-gut syndromes are treated by combining several effective antimicrobials (including use of azole medications with specific antibiotics) with agents that boost gut lining repairs and overall immunity enhancement. Azole medications are borreliacidal (against the anti-Bb spirochetal cyst form) medications such as metronidazole (Flagyl). Needed GI healing agents may include gut stimulants or relaxants, Ph agents, bile salts, nutriceuticals, immunity-enhancers, neurotoxin absorbents, and sterilizers of gut-specific microbes.
Parallelism between Lyme borreliosis-caused paresis of facial muscles supplied by Cranial Nerve VII and Lyme-caused gastrointestinal paralyses suggested a pseudonym to the author--Bell's palsy of the Gut--despite the fact that these syndromes are related to different types of neural fibers and only occasionally occur together. Since similar injury to all sites may be etiologically related, however, otherwise unexplained gastrointestinal symptoms should be considered as possibly related to Lyme borreliosis and/or its co-infections until proven otherwise.
Posts: 789 | From CT, | Registered: Jun 2006
| IP: Logged |
hiker53
Frequent Contributor (5K+ posts)
Member # 6046
posted
Lymetoo,
When I first was diagnose with lyme the doc ran c. dif test just as a routine even though I had no symptoms. It came back positive, but I do not know if it was a true positive as it was just one stool test or if it got contaminated. Took one week of vancomycin, but never got retested. That LLMD is now out of business. Hiker53
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8935 | From Illinois | Registered: Aug 2004
| IP: Logged |
WildCondor
Unregistered
posted
Check this out, all the info is there on c.diff, register to view
posted
Thanks, WC! I hate registering...but maybe I'll break down and do it.
That's interesting, hiker.
Bells Palsy of the gut? Most likely!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
| IP: Logged |
Truthfinder
Frequent Contributor (1K+ posts)
Member # 8512
posted
Thanks, Al. I do think that Bells Palsy of the Gut article is just excellent. It mentions two rather uncommon conditions, ``megacolon.... and rectal muscle cramping (proctalgia fugax)''. I have megacolon and my ex-boyfriend has proctalgia fugax. We both tested positive for Lyme.
Well, knock on wood, but I've been back to normal for 3 days now. The only thing different that I did was the 9 days of the Oregano Oil softgels, just one softgel 2 x a day. I didn't even have to resort to homeopathics.
I still have the pressure in my R rib cage area after eating, though. And my eyes are still not quite right, but better than they were. I've started taking Thisilyn 2 x a day for some liver support.
How are things on your `end', Miss Tutu?
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
| IP: Logged |
posted
Doing pretty good. Have no clue why it's settled down. I WAS taking Diflucan, which I stopped taking last week after having been on it for months.
Maybe that was it?? I noticed one day that I felt horrible in my gallbladder/liver area after having taken the Diflucan.
I may go ahead and have a CT scan just in case. We'll see what the GP has to say.
I did feel nauseous Saturday after eating eggs, but yesterday I felt pretty good.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
| IP: Logged |
Truthfinder
Frequent Contributor (1K+ posts)
Member # 8512
posted
I wonder if our liver/gall bladder can get congested and painful or sensitive if we are detoxing a lot. That could certainly be true in your case - after having that nasty sinus infection which was relieved with surgery - maybe you are processing out a bunch of debris from all of that.....
I've been drinking a lot of lemon water and stuff lately, too, which I never used to do.....
Well, the CT scan wouldn't be a bad idea.....
I'll probably do what I'm doing with the Milk Thistle and see if I have any abnormal liver readings when I get my blood drawn at the local Health Fair in the next month or so.
Well, Miss Tutu, please post your results if you get the CT scan. Meanwhile, my dear, I wish you continued improvement.
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
| IP: Logged |
posted
I work in healthcare. Any time we think a patient has c-diff the first thing that is ordered is a stool culture. Vanco is the most commonly used meds to treat c-diff (it is an anitbotic and anti-fungul). If it is c-diff docs usually prescribe both vanco and cranberry tablets. Symptoms of c-diff may include; green, watery stools, very, very smelly stools, sometimes stomach cramping, nausea, chills. If you do in fact have c-diff make sure you and others in your home wash hands very well!
good luck.
-------------------- Bullsye rash: 1994, tx w/ ABT, Symptomatic:1999 Hospitalization: 2004 Equivocol results (specialy lab) resulting in chronic use of ABT, herbs, etc ever since. Severity of symptoms continue to worsen intermittingly. Posts: 140 | From maryland | Registered: Oct 2006
| IP: Logged |
map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Tutu, I'm ordering that you have no more surgery. Period! End of story. Everytime you let someone enter your body surgically, you end up in some place not so nice.
You really need to quit upsetting those critters in your body. When they get mad at you for interuptting them, they rebel. Or maybe other critters are allowed to enter your body when you have these surgeries and it's too much for your immune system to handle.
Don't you wish that Dr C could address everything in your total healthcare? Then you wouldn't have to deal with quack quack all the time.
Tell him he needs to further his education so he can treat any and all areas of your illness up to and including eyes, teeth, sinus, whatever.
I hope you are doing okay. The Bells Palsy above was printed off on my computer also. Could explain somethings GI wise for me also.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[group hug]](graemlins/grouphug.gif)
![[confused]](graemlins/confused.gif)
![[Frown]](frown.gif)
![[Smile]](smile.gif)
)![[kiss]](graemlins/kissing.gif)
![[rant]](graemlins/rant.gif)
![[shake]](graemlins/shake.gif)
![[Big Grin]](biggrin.gif)
It's come and go...WE're going nuts over here.... ![[Roll Eyes]](rolleyes.gif)
![[toilet]](graemlins/toilet.gif)
Printer-friendly view of this topic