LymeNet Flash: for those of you with intestinal problems..

This is topic for those of you with intestinal problems.. in forum Medical Questions at LymeNet Flash.

To visit this topic, use this URL:
https://flash.lymenet.org/ubb/ultimatebb.php/topic/1/34231

Posted by Nal (Member # 6801) on :

Did any of you that have/had intestinal pain (burning, cramping, etc) find that those symptoms would come on for a long time then disappear and then come back again before doing any treatments?? Im still trying to figure all this out.

When I first got stomach pain it was exactly one year after my other symptoms started. I had the stomach trouble for several months (back in 99). I tried all the diets (including the candida one), stomach meds and nothing made it better. I finally gave up. Slowly my symptoms went into remission along with the other symptoms of Lyme/Bart. I was never treated for any Lyme or anything at the time cause they didn't know what it was.

Ironically I started with the Lyme symptoms again in April 2004. Exactly one year later (March 2005), the stomach pains start again-started with a tight cramp feeling in the middle of the small intestine area (mid upper abdomin) and has spread all the way through (sometimes it burns so bad I swear Ill burn a hole in my guts!!). GI dr cant find the cause-check h-pylori, etc. Tried Librax but that isn't doing squat either.

Im back on the candida diet, taking pro-biotics, etc and noticing no relief (been on probiotics for several months) Treatment for Lyme/Bart has not been successful yet because I haven't been able to find an antibiotic combo thats helpful or tolerable. Besides I only started antibiotics a month ago (that was AFTER my stomach problems started).

Isn't this all a little bizarre?

Nancy

Posted by Carol in PA (Member # 5338) on :

Nancy,
Yes, this is a bizarre disease.
I am fortunate that I don't have many gut problems, but my sister and niece do, and I'm always on the lookout for things that will help.

Someone else at LymeNet had posted that her son's intestinal problems improved after using an aloe vera extract.

Aloe Mucilagenous Polysaccharide http://www.molocure.com/index.shtml

Hope this helps.
Carol

p.s. This is expensive, but if you look at the cost of seeing physicians and buying medication that doesn't work, then buying this aloe would be well worth the $$$.

Posted by johnlyme1 (Member # 7343) on :

I fist had stomach issues one year before full lyme set in - they thought I had GERD - Two GI procedures only revealed some reflux and possible gastridus - They put me on previcid - I had two major attacks where nothing would help - this stuped the GI docs, In hindsight I realize it was the lyme with the co-infections that I have that was causing the problem. While beng treated for the co-infections my whole intestinal system has had what you described. I have had periods of months not needing any antacid and then the need when the bugs are flairing up. I would make sure where you are with the co-infections - some of them mess up the intestines.

Posted by earthgirl (Member # 7314) on :

I have also suffered from gastrointestinal issues on and off over the years. Sometimes it feels like my GI tract just shuts down and doesn't want to digest anything. Well, along with my recent Lyme diagnosis, i was also just diagnosed with gluten intolerance. My doctor says she's actually seen a high correlation between the two. I've gone gluten-free but no major change in symptoms yet... of course my antibiotics are probably messing up my GI system now too! ugh.

Posted by Nal (Member # 6801) on :

they tested me for celiac-was all normal. I don't want to take any antibiotics now because it might just kill me. I friggin hate all of this and I just want everything to end. How the h... amd I supposed to know how to treat anything when my gut is falling apart. I hate life right now-hate it, hate it, hate it, hate it. Im 32 and ready for everything to just end. I did test positive for Bart. Im so sad, full of tears and I dont know how much more I can take.

Nancy

[This message has been edited by Nal (edited 21 May 2005).]

Posted by earthgirl (Member # 7314) on :

Nancy - i'm so sorry to hear you're going through a rough time right now. I wish there was more I could say, but i can totally relate to what you said. i keep telling myself "this too shall pass..." sometimes it gives me strength and peace, other times it's a real struggle.
-s.

Posted by janet thomas (Member # 7122) on :

Yeah, I hate life as it is now, too. There is life after Lyme (that's what I tell myself every day). I like to watch funny sitcoms when I'm down. I Love Lucy is my favorite.

How about IM abx (bicillin)?

Fasting for a day or 2 might give your gut a chance to settle down, just a thought. Drink lots of water. Also, I think it's ok to skip a day of abx when you need a break.

Do you have a good LLMD? Phone for help.

What abx are you taking? Doxy was hard even on my iron stomach. I can tell you what I did wrong with doxy if you're taking it.

One month is not very long on abx.

Ask your dr about nystatin-another thought.

I am not a doctor, this is just my opinion.

Janet

Posted by lifeline (Member # 3445) on :

I, too, have gastro problems that have been helped somewhat by stopping dairy, especially milk. I was drinking at least 1-2 glasses every day of skim due to osteoporosis.

Dr. C and Lymetoo suggested eliminating dairy and it has really helped me a lot.

Also, I started taking a truckload of probiotics, different kinds every day. Expensive, yes, but worth the comfort for my tummy. Primal Defense, Culturelle, PB8, and Saccharomyces Boulardii...I interchange, but I take more than the bottle recommends. I don't take Candex.

I still do have tummy probems occasionally, but I try to keep track of things I eat that may be the cause.

I have learned that Lyme has caused these allergic reactions, at least with me, and I have never had any allergies to anything. Now, it seems things crop up.

Try keeping track of foods you eat and see if that helps. If you suspect a food is the cause of some of your gastro pain, Dr. C suggests go off it completely for 4 days, then back on. Then you can surmise it might be the culprit.

Rifampin really helped my Bart problems, also. I know different drugs work differently for everyone, but if you haven't tried that yet, it might help.

Good luck with this, Nancy. Keep working on it.

lifeline

Posted by deb obrien (Member # 5239) on :

hi nal - i had some big gi probloems (gi shutdown) secondary to benicar - flagyl brought me out of it - took a month for all the pain to resolve...now i do probiotics and wobenzyme faithfully and have no problems...sam donta has a paper from one of the conferences...lymediseaseaction.org.uk/conference
good luck,
deb

------------------

Posted by trailsgrl (Member # 7285) on :

Nancy,

this disease is freakin hard hard and really zaps you. I am sorry about where you are at and all your pain and multiple problems. Iam right there with you if that helps. I am even the same age as you!

I have been struggling with it since 91. I am sure you have seen some of my posts and I think I wrote to you on the brain talk board.

There can be times without symptoms and pain. I know that is hard to believe, but there can be and I had them. Sometimes I couldnt come to these boards because there was actually too much negativity. When you are sick the computer and this board is a great way to meet folks, but when you are well, you dont have time to write and gripe. I think about the folks I knew on this board in 2001 and wonder where they are now since they don't seem to post anymore. I myself didnt post for 4 years and forgot my password so I had to rename myself. Used to be just TRAILS. So some people get better and don't come on this site to let us know there is LIGHT!

I too am having major tum tum. This specific pain just started yesterday and it is directly in the stomach (upper ab. between end of ribs) and actually woke me up it is so painful. Took diflucan, eating yogurt (the good kind) and probiotics and trying not to eat sugar. It is hard! Hardly any relief yet. This is on top of intestinal problems from endometriosis and sludge that is killing my gallbladder.

I think there is a board over on the brain talk about gluten free. Maybe post there and get some hints. I used to have a partner who was celiac. She got along great! SHe ate fake bread, or something, and lots of rice instead of gluten things.

Oh, and I too never had ANY allergies until Lyme when AFTER major ABX in 2001 I had hives for months. THey still dont know what I was allergic to except auto immune disorder. Hence the endo stuff possibly being caused by Lyme because Lyme and ABX mess up the immune system, and endo is caused by immune problems.

I am rambling. Sorry. Hope the company helps. You will find your answer, you will get better, but right now just sucks. I hear you.

Trails

Posted by Nal (Member # 6801) on :

I wasn't on ANY antibiotics when my stomach flared up both in 2000 and this past March-none at all!! I don't see how I could have food allergies if I never really changed my diet in 2000 and yet the symptoms went away (I tried the candida diet-no help. So I gave up and went back to my normal diet. A couple months later, the stomach symptoms were gone).
So, there were also no antibiotics in place this past March when it flared again and no change in diet. I do take prevacid for heartburn but thats been it.

My current med are only flagyl (once a week and thats only been for about a month) and diflucan. I just wonder if its not from the Bart. I know when I begin treatments, the stomach will get worse before it gets bettter right? I see my LLMD again on Tues and my GI dr in 2 weeks. All my tests with him were normal except for gastritis which I am wondering is either from the Bart or stress (man oh man have I been stressed!!!!).

You guys are awesome. Thanks for listening to me whine. Why would my stomach symptoms just disappear (no treatment or diet changes) and then come back a couple years later?? AAAAGGGH

Nancy

Posted by trailsgrl (Member # 7285) on :

Nancy,

I think I may have found something here!

You may already know this, but in case not:

Merk Manual says about Peptic Ulcers :
"Frequently the pain erupts once or more a day over a period of one to several weeks and then MAY DISSAPEAR WITHOUT TREATMENT. However, pain usually RECURS, often within the first two years and occasionally after several years. People generally develop patterns and often learn by experience when an occurance is likely." (Your one year ago exactly episode?)

That seems to speak to your question pretty directly!

Not all ulcers are due to H plori. They can be due to NSAIDs which lots of us lymies have used and also to immune problems. Surprise.

I am not certain, but I think I may be having an ulcer right now, it was the most accurate description of my newest tummy symptom.

Let me know what you think!
Trails