posted
My daughter has had GI issues for years. They seemed to be getting better with treatment.
She had been on doxy, mepron, plaquinel, bactrim and ketotifin. She was doing great on that combo, but the LLMLD changed it up about 5 weeks ago and switched to alinia and mino.
She seemed to be doing OK and had been starting the new meds ramping up really slowly.
Then a couple of weeks ago, her stomach began to be really painful, and she ended up in the ER.
She has been off her abx for 2 weeks now trying to get her stomach back in shape.
After about 3 days of a BRAT diet we began to add other 'allowed' foods and she was doing OK. After a week I decided it was time to start her back up slowly on her meds.
She continued to take high dose probiotics all along and last Saturday I gave her Immflamaquel and a digestive enzyme that she has been taking for a year or more. Within a half of an hour she was once again in severe pain and was throwing up again that evening.
No more enzymes for now, I guess.
6 more days go by and I gave her supplement with plantains, marshmellow root and slippery elm. Within half an hour, all of the symptoms started again and she said her pain was at a 12. Mind you this is a kid who lives with pain every day and has a fairly high tolerance.
It seems to have calmed down now, but I am scared to give her anything because I don't know what will set it off. I was shocked that a GI supplement by Thorne (marshmellow, plantain and slippery elm) would inflame it again.
She is fructose intollerant and we try to do a very clean diet. Once in awhile, she will 'cheat' but for the most part she stays away from sugars and processed foods.
So now it's been 2 weeks and no abx, no supplements. I don't know what to start her on. Her Babesia is having a field day and her symptoms seem to be in full swing now.
I know that the Alinia is supposed to go to work on the GI Parasites, and it may be that this has been one giant herx, but I just don't know...
It would be helpful to hear of anyone's similar experience or reactions to enzymes and supposedly calming herbs. I had felt confident that she was progressing in treatment and that we would get through this. Now I just don't know. If she can't take her supps/meds how are we ever going to get her well?
Posts: 333 | From Lyme Here Too | Registered: Mar 2010
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D Bergy
Frequent Contributor (1K+ posts)
Member # 9984
posted
I would treat for H-Pylori simply because it is common, and seems to be even more common with Lyme Disease.
I have had the pain of this infection, even though I do not have Lyme Disease. It is aggravated by anything with citrus, coffee, or anything else that is acidic in the least.
My wife, who has Lyme also had the infection, but she got it later on. Actually, I think what happens is it moves up from the intestinal tract, into the Stomach, when it gets an opportunity.
I got mine when I started using antacids. I think this allowed it to move up into the Stomach.
Dan
Posts: 2919 | From Minnesota | Registered: Aug 2006
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G.I. complaints have been a major part of hubby's illness. There have been times when just drinking water would set things off.
For him what made the most difference was using levaquin and then eventually factive and rifampin for the bartonella.
As to how to heal the G.I. -- the best combo was an herbal tea I modified called slime tea. It had licorice root and also marshmallow and slippery elm and then you added in ground flax seeds. Think there were a couple of other ingredients. The original recipe was in an herbal book but I made some changes and then the herbalist we were working with suggested some other changes. Will try to find my recipe and post it.
If your daughter has gastritis then the powdered herbs may scratch if not ground finely enough. To start I would simply heat some water and break open a couple of the G.I. capsules you mentioned and dissolve them really well and see if she can tolerate that. Drink the tea lukewarm.
Aloe vera gel diluted in water might also help.
You did not say, but hubby always took all antibiotics with the exception of rifampin with food -- his docs agreed that that was best even if it cut down slightly on absorption.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
Not to hijack but I am dealing with this as well...
seibert I love the tea recipe. I am to the point if I eat ANYTHING, I am in pain in about 20 mins. I was tested for h pylori and don't have it. I also often vomit after taking my meds/supplements, which I avoid taking with food bc of the pain...
The gut issues started about a month ago. I thought it was because of the herbs I was on but...now I wonder...
Posts: 206 | From In the shadow of a mountain | Registered: Feb 2011
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karenl
Frequent Contributor (1K+ posts)
Member # 17753
posted
Alinia is causing GI trouble, maybe give her a break from alinia.
Posts: 1834 | From US | Registered: Oct 2008
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I had terrible stomach pain and had a HIDA scan that showed hyperkinesia-- 94% ejection fraction.
Then an endoscopy showed hiatal hernia and bile reflux.
And finally, most importantly, a gastric emptying study, which showed that I have severely delayed stomach emptying.
This is a common result of vagal nerve problems from Lyme. Get your LLMD to refer you to a GI and get some studies done. It's treatable.
-------------------- Son, 26, Dx Lyme 4/10, Babs 8/10 Had serious arthritis, all gone. Currently on Valtrex Daughter, 26,bullseye 7/11 arthritis in knees, cured and off all meds. . Self:Lyme, bart, sxs gone, no longer treating. Posts: 496 | From Washington, DC | Registered: Jul 2010
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Went to havea bunch of labs today including H-Pylori. She couldn't do the breath test because she's not yet 18.
It's been almost3 weeks since she's had this bout of GI issues, and no abx. We see the LLMD next week so it will be interesting to see what they think about treatment options.
GI troubles have been such a big part of her symptoms and I am afraid now that maybe oral abx may be out of the question for the next little while.
Now I get to compulse and worry about what if it is H-pylori and what if she is prone to it, and what if she can't be on orals... It's so hard sometimes to let go and let Lyme and co take it's course.
I am such a control freak and if just wanting to make my family better was enough, we would be the healthiest folks in the universe!
Posts: 333 | From Lyme Here Too | Registered: Mar 2010
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posted
Daughter 11 had terrible stomach pains around the navel area....along with stomach distension, gas, constipation, and just overall stomach pains.
extensive GI tests showed NOTHING....
stopped all meds to rule out if it was that, then I put her on a Gluten Free diet...and symptoms slowly lessened!!
Posts: 501 | From Hudson Ticky Valley, NY | Registered: Aug 2009
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Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
HP can be more symptomatic in younger people. If it shows up, make sure you have a doc who knows how to get rid of it. It will likely take a strong protocol since HP will have developed resistance to the meds used to treat her lyme...
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
Mastic gum helps with h. pylori. Apparently, the bacteria can't survive in the presence of this herb. I also was on GSE at the same time, so that probably also helped for me.
Yeah, the gut symptoms from Lyme are the worst...and in my experience, it is next to impossible to find gi doctors who are open-minded...
Take care,
-Razzle
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4167 | From WA | Registered: Feb 2011
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karenl
Frequent Contributor (1K+ posts)
Member # 17753
posted
Could the probiotic VSL 3 DS probably help? She was on a lot of abx...
Posts: 1834 | From US | Registered: Oct 2008
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was recently recommended to me by someone well-versed in Lyme and company. You might want to try this lab, as they're supposed to be much better than "standard". I think their stool testing runs ~ $105, not bad at all comparatively.
Is she gluten-free? I had sudden and severe GI pain about a year ago that came on fast and furious, and sent me to the ER twice as well. After going GF, my issues became 95% resolved. No cheating allowed though. I lost 30lbs in 2 months at the time.
Since GF, am happily eating again! I didn't believe it could be night and day when reading about it here before, but it really was. You may want to give it a try.
-------------------- (The ole disclaimer: I'm not a doctor.) Posts: 1349 | From VA | Registered: Jul 2006
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
But if gluten is a problem, make sure you either use gluten-free oats, or skip the oat gruel...
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4167 | From WA | Registered: Feb 2011
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Bea, if water gives your hubby symptoms, that is a CLASSIC sign of parasites! And they are sooo hard to dx and tx properly. Another time I could give more info. Almost everyone has them, unless they've really dealt with them. And you can always get them again, too.
Posts: 3778 | From around | Registered: Mar 2008
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Hubby has been on alinia and many other things since his stomach was so sensitive. I really think it was just bartonella at that time, but regardless with all the herbs and antiparasite meds I don't think he has G.I. parasites anymore.
The G.I. panel from Diagnostechs lab back then only found possible toxoplasmosis -- has taken Daraprim for that if it was real. Also gluten and casein intolerance which we knew about -- but sometimes he is not 100% compliant with his diet and I know that can be a problem.
It was more as if his vagus nerve was irritated and anything he ate or drank could trigger dry heaves or vomiting and tremors or myoclonus or seizure-like episodes.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
Mastic gum is not a foolproof HP treatment.
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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My LLMD ran a basic stool culture and said I was negative for parasites.. is this enough to confirm I don't have them? I am guessing, like all things related to Lyme disease, No.
Posts: 341 | From NY/FL | Registered: Apr 2010
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