When my daughter was 7 she became very sick - 3 months later was diagnosed lyme and treated 3 wks w/ amoxy.
Since then she's had acid reflux, off and on over the years, and a sensitive stomach.
Last year, when she was 13, her acid reflux increased until she had 5 days where she could not keep anything down, not liquid or food. everything came up in little spurts.
She was put on Prilosec, examined, and diagnosed with Barrett's Esophagus. Acid became controlled with Prilosec and Liquid Carafate combo.
This December various lyme symptoms returned, sore shoulders, sore ankles, head pressure, sleep issues, and the GERD became hard to control again. She's not "sick" like the rest of us, but now I recognise her symptoms.
Last month, age 14, she saw LLMD and was diagnosed with Lyme, Bart (has had marks for 5+ years), Babs. She was put on Rifampin and Azith for 4 weeks which seemed to be helping her symptoms except sleep and GERD.
Her second appt. with LLMD was yesterday, and when I told him how severe her GERD has become, he changed her to Ceftin.
Here is what she has been taking: upon waking - 40mg. Prilosec (for acid) breakfast - Rifampin, Azith, 200mg. Adrographis lunch - multi vit., vit.B, vit.C, magnesium dinner - Rifampin, Azith, 200mg. Andrographis 9pm - probiotic (100 billion micro) before bed - 40mg. Prilosec, liquid Carafate up to 4 times a day before meals (for acid)
She has stopped Chocolate, Dairy, Caffeine (we only drink water), fatty foods. For lunch she has PB&J and an apple or strawberries and still gets acid.
For the last week or so, the acid has become quite bad. Burning in her throat, sometimes after breakfast, always from 1pm until after dinner.
Last night she got little spurts of acid in her mouth, after eating & on empty stomach, just continuously.
Could anything from the above list could be making her acid worse? Please help me figure this out!!!!
Worried Mom
[ 04-23-2010, 04:56 PM: Message edited by: 17hens ]
Posted by Lemon-Lyme (Member # 19229) on :
What type of magnesium? Mag citrate may make things worse. Too much vitamin C could be acidic also.
You could up the probiotic dose or ask your doctor about VSL #3 DS (tons of bacteria), if you have good insurance.
Some celiac/gluten testing would be worth doing, if the doctor hasn't already ruled that out.
Posted by sammy (Member # 13952) on :
First thing that comes to mind, has she tried taking her meds/supplements in the middle of her meals? It might be less irritating than taking them before or after.
It doesn't sound like her diet is actually contributing to the excess acid and burning symptoms.
Have you tried supplementing with digestive enzymes? I wonder if it might help. Maybe her body is having trouble digesting foods so it is increasing the acid production despite your attempts to lower the acid with medications.
If you decide to try a supplement, look for something without HCL. Papaya enzymes or pancreatin would work well. I like Jarrow brand's "Jarrow-zymes plus".
Sorry, I'll come back and add a few more thoughts later. I have an appt to go.
Posted by 17hens (Member # 23747) on :
Thank you, LL,
Magnesium: magnesium (as magnesium oxide, magnesium citrate, and magnesium gluconate) 200mg., Poassium (as potassium chloride) 99mg Boron (as trace mineral protein hydrolysate) 1mg.
She takes 2 or 3 of these magnesiums a day.
Chewable C: Vitamn C (as ascorbic acid) 100 mg.
She takes 3 or 4 of these Cs a day.
Do you think she could use more than 100 billion Probiotic? (www.customprobiotics.com)
Her gastroenterologist is a wonderful doc. One of those brilliant doctors who has a gentle kindness as well.
I mentioned food allergies to him last year, and he didn't seem interested to go there.
I really want to find the cause and go after it rather than just treat symptoms...
My gut tells me the Lyme/Bart is the cause...
Posted by Lemon-Lyme (Member # 19229) on :
Lyme/Bart could very well be the cause. Pretty sure I've read that bart can cause gastritis symptoms. And antibiotics could make belly issues worse too.
But it's smart to just rule out other possibilties too. You can get food allergies and celiac/gluten tested from simple blood tests. Your family doctor can even order them. Immunocap does a full food panel test, as well as gluten testing. And Celiac can be tested (albeit not as accurate as biopsy) via a regular blood test. No harm in at least testing for them. Look up immunocap on the web if you want further info -- they do tons of allergy tests and insurance pays for them -- and most labs go through them (labcorp, sunrise, etc).
For supplements, maybe consider Ester C (gentler on belly), but take away from antibiotics due to small amounts of calcium. Vitamin C can definitely make your stomach more acidic.
Something like an Albion magnesium glycinate may be a better mag choice. Citrate and chloride could worsen stomach acid, although I suspect the doses are pretty small in that particular mag.
And enzymes are worth considering, like the previous poster mention. Can't hurt to try some papaya after a meal. And a little more probiotics are worth considering.... again, ask your doc about VSL. It's something I think all antibiotic people here should consider if they have insurance. I take 1/3 of the satchet daily, and still get 300 billion bacteria daily.
Posted by Carol in PA (Member # 5338) on :
While you are figuring out what's causing the reflux, look into D-limonene.
D-limonene may help, but I am unsure if it's a good idea to take it when on antibiotics or medications. I wonder if it could increase their breakdown in the stomach and increase absorption?
And that isn't necessarily a bad thing all the time, just not sure in this case. I have tried D-limonene myself, and the one issue I notice is orange burps hours after taking it, so I'm not certain a person can even take it hours away from antibiotics and be safe.
Posted by Starfall1969 (Member # 17353) on :
Just my two cents, but I had horrible reflux when I first started with Rifampin, and it still occasionally acts up.
Posted by Starfall1969 (Member # 17353) on :
Funny this topic should be up here--
I just had a really weird/gross incident after supper.
I took my Doxy after I ate like usual, and a few minutes later I burped (okay, belched, lol), and breathed out a white chemical-tasting cloud.
I'm assuming I just refluxed the Doxy I took, which has happened with the Rifampin but never with the Doxy.
Something sure must not be right....
Posted by sammy (Member # 13952) on :
17hens, has the Carafate made a noticeable difference in how your daughter feels? If not, you might consider talking with her doctor about trying DGL before meals instead.
If nothing else helps, your daughter may need to try a different RX such as Nexium. Sometimes you have to try a few different meds before you find the right one that works for you.
Hope your daughter feels better soon Posted by lymebytes (Member # 11830) on :
Common w/Lyme is H.pylori. My LLMd considers it a co-infection. I thought I had yeast, or c.diff or parasites, but he tested me for h.pylori and that was it. Made a big difference after treatment. If she hasn't been blood tested for it, ask for a test.
H.pylori has plagued me again and again. It needs triple or quadruple therapy. There are different combo's the most common are Biaxin/amoxi/PPI in combo. More resistant strains may need a different combo.
Posted by joalo (Member # 12752) on :
I used to get terrible acid reflux from anything with wheat in it, bread, crackers, cereal, cookies, etc. Also, any kind of cola drinks, chocolate or mints.
I cut all of that *stuff* out of my diet and I don't have a problem with reflux anymore. Just a thought...
Posted by 17hens (Member # 23747) on :
Sammy, the Carafate made a huge difference for her last year when she was diagnosed. Now, not so much.
When she was daignosed with Barrett's, she had an endoscopy done and that's when they tested for h.pylori. So I don't know how they tested for it, i'm guess took a sample of something while they were down there. But the test was negative.
Maybe they should test again another way?
I will pursue food allergy and celiac testing.
When the acid was really bad last year, but before the 5 day episode that led to endoscopy and diagnosis, she tried DGL and Papaya but they didn't make a dent. Maybe we'll try them again at some point.
I'll look into Ester C and VSL. Great suggestions.
The gastroenterologist just emailed and said he's calling in a scrip for Protonix. I'm not familiar with it. Maybe that will help for now?
Thanks so much for all your ideas!! It means a lot to me that you've taken the time (and energy) to try and help!
Posted by Carol in PA (Member # 5338) on :
quote:Originally posted by Lemon-Lyme: D-limonene may help, but I am unsure if it's a good idea to take it when on antibiotics or medications. I wonder if it could increase their breakdown in the stomach and increase absorption?
Do you have info on any studies to back this up?
If she did try this, I think she would be able to tell if it were helping within a day or two.
If you take acid blockers, Vitamin B12 will not have enough stomach acid to break down properly, and then it won't get absorbed at the end of the small intestines like it's supposed to.
You'll end up with nutritional deficiencies.
Carol
Posted by Lemon-Lyme (Member # 19229) on :
quote:Originally posted by Carol in PA: Do you have info on any studies to back this up?
Carol
Afraid not, but I was just repeating advice given to me when I inquired with a supplement manufacturer regarding Limonene and drug interactions. They told me not to take it around the same time I took medications.
Limonene is used to increase absorption for CoQ10, so my concern was that it may have a similar interaction with some drugs.
Since she has Barrett's we are talking about a serious gerd problem here -- not sure any OTC supplement will be a cure, but she can speak to her doctor about limonene and see what he thinks.
Posted by andyc210 (Member # 25204) on :
I went to a GI and had every test done. Everything was inflamed but they could not find the cause. Took Doxy for like 3 or 4 days and felt way better. Also taking nexium. Nexium works wonders!
Posted by massman (Member # 18116) on :
Drugs really heal
(satire above)
Sorry I posted Just wanted to talk about reducing inflammation + healing instead of just covering symptoms.
[ 04-15-2010, 10:42 PM: Message edited by: massman ]
Posted by beths (Member # 18864) on :
I had 2 years of horrible GERD..funny, after my bart symptoms resolved, so did my GERD. I still take Prilosec, and have occasional GERD, but nothing like before.
I think Bart caused my GERD
Posted by 17hens (Member # 23747) on :
------------------------------------------- Massman said, "Just wanted to talk about reducing inflammation + healing instead of just covering symptoms." -------------------------------------------- Yes, Massman, you hit the nail on the head. Reducing the inflammation and healing is my goal.
What do you guys think about trying Coconut oil? I've never tried it but have read a lot about it here. Any recommendations - brand, when, how much, etc? Good idea or not?
Posted by TF (Member # 14183) on :
When you have an endoscopy, they put a camera in your stomach and look around for h. pylori. They know exactly where it grows and what it looks like.
They take small samples of the stomach in the places where h. pylori would be. Then, they examine the samples for h. pylori.
Generally, a gastro can tell you at the end of the endoscopy if you have h. pylori or not.
If your daughter did not have it when she had the endoscopy, I doubt she has it now.
Since h. pylori is the most common cause of GERD, this really looks like her GERD must be caused by the bartonella.
I have also had people tell me that when they went to a carb-free diet, their GERD practically disappeared, often in 1 week.
So, I hope this happens for your daughter. Then, once you treat the bartonella to extinction, hopefully that will be the end of her GERD.
Posted by 17hens (Member # 23747) on :
TF, carb free diet - uuugh! This is my picky eater we're talking about...
I know, I know, I'm the parent, she's the kid, if we want her to get better...
Of course it makes sense, carb free = acid free = bring on abx = kill Bart! And that's exactly what we want!
Reality is, this is my picky eater, i'm more sick then she is and have less energy for teen battles... boo-hoo, poor me
Carbs are what she's been living on as they don't seem to make her sick. OK, let's see, she doesn't like meat, she told me when she was 5 that she was a "begetarian." (None of us are but veins and cows gross her out.)
She likes fish and she'll eat a few bites of chicken (with no veins). Many veggies give her acid (broccoli, lettuce, tomato, but she likes the pea, corn, carrot mix and she'll eat asperagus and snap peas.
She likes fruit. She lives on cereal and soy milk. She'll eat pb&j or pb&pickle or pb&honey&banana sandwiches. We only eat 12 grain bread. And of course junk food like cookies & chips don't make her sick.
Soup gives her acid (even homemade chicken soup). Saltines, spaghetti, toasted cheese and lots more give her acid.
So it'll be like retraining her...
Dumb question, but is there a list somewhere of food to eat on a carb-free diet, so I don't have to tax my lyme brain trying to figure it out?
Thanks so much for your input. I appreciate it!
Posted by TF (Member # 14183) on :
To make a carb-free diet very simple, it is just meat (including fish and seafood) and non-starchy vegetables. You can also have nuts, cheese, milk, eggs and seeds.
You CANNOT have anything made from flour or grains such as:
crackers spaghetti cookies pretzels cake cereal bread rice oatmeal
You CANNOT have anything made with sugar. Sugar is a pure carb as is white flour.
Notice how a cracker melts in your mouth? It is turning to sugar in your mouth.
You will have to get peanut butter with no sugar in it.
You CANNOT have any fruit since fruits have fruit sugar in them. Can't have fruit juices for the same reason. Can't have jelly.
You CANNOT have starchy vegetables such as white potatoes and corn. So, nothing made from these 2 items either (potato chips, corn chips, etc.) They just turn to sugar also.
This is actually a perfect diet for a diabetic because it will keep their blood sugar low.
It is also a perfect anti-yeast diet because yeast needs carbs/sugar to feed on. You can read a little about it in the Burrascano Guidelines when he talks about anti-yeast diet.
This is how I ate all during my lyme treatment to prevent yeast--doctor's orders.
A number of people have told me that just going on this diet has helped all of their lyme symptoms tremendously. It is automatically gluten-free also.
If she sticks to it for say 2 weeks and doesn't feel any benefits, then you could just forget it. But, it is probably worth a try.
Posted by imagine2 (Member # 3136) on :
I have severe gerd as well. Prilosec helped for a while but it got so bad I vomited acid in my sleep. That's when my doc put me on protonix too. It has r-e-a-l-l-y helped a lot.
I also stopped taking meds at the end of the meal. I interspersed them throughout the meal and ended with food, not supplements, as I had been doing.
Have you tried elevating the head of your daughters bed?
Hope she feels better. Gerd is really miserable.
Posted by map1131 (Member # 2022) on :
17hens, my goodness! She is much too young to have such serious GI problems. My husband also has Barrett's.
He had some slight heart burn for years, then came typical lyme sx suddenly and early tx because I recognized the illness early. His heart burn turned GERD during that time and never healed.
His sx are controlled with meds. His last endoscopy shows improvement and less inflammation. The abnormal tissue has to be watched for cancer cells. Family history there.
There is no doubt in my mind my husband is lyme or co-infected with something. He doesn't see it. I wonder about the Barrett's & lyme/co connection for him?
I'm a rife user and I just keep my machine running in his presence to try to keep him from going full blown.
I'm so sorry your daughter is having so many problems. Just too young!!!!!!!!!!!!
Pam
Posted by massman (Member # 18116) on :
A carboholic daughter ! Grossed out by veins ! Sort of commom, IMO.
Reduce inflammation - aloe can work well. I prefer aloe from www.systemicformulas.com Runs about $20 - it is condensed, so you get a good amount.
Taking probiotics ? I may have missed if she is already taking them.
Digestive enzymes from a good company can be helpful - Ds from the above source specifically have very little or no acid in them. _______________________________________________ DISCLAIMER: I get no moolah money pesos euros silver gold brass or grass for recommending any specific supplements from anybody anything including space cadets, geniuses + all. Posted by 17hens (Member # 23747) on :
TF,
Oh my goodness!!! From that list, my daughter will eat fish, bites of chicken, carrots, peas, and beans, a little cheese, peanuts, and milk.
How is a person able to survive on that? What do they eat for breakfast? There's nothing in that list even to put sugarless peanutbutter on!
I know you didn't make up the list, you were just kind enough to share it with me... but I just have no idea how I could ask this of her...
Really, I'm not being rude or ungrateful. I just don't know how to go about this...
I understand how important it is to stop her acid. Really. I loose sleep over it! I get it!
But HOW can I ask this of her?
Any sincere, kind, gentle suggestions?
Posted by glm1111 (Member # 16556) on :
Google alkaline foods and use that as a guide. Cucumbers are very high in alkaline. It's possible the B and C vitamins could be causing some problems as they are considered acidic.
Maybe cut back some things and see if the acidity eases up. Maybe all of the things she is on are too much for her little tummy.
Gael
Posted by lpkayak (Member # 5230) on :
abx and ibuprofen cause my gerd. when i am off them i can get off my omneprazole. when i am on them i can't.
but i had over 3 yrs of huge abx doses and have been on ibu for 30 yrs...its a shame such small doses are making her sick
i am now doing buhner herbs with success...but i believe to tx lyme it is best to zap it with a lot of abx first---a yr at least at llmd dosage...then switch to herbs later. good luck.
Posted by Carol in PA (Member # 5338) on :
quote:Originally posted by 17hens: I understand how important it is to stop her acid. Any sincere, kind, gentle suggestions?
I noticed an improvement of my acid reflux/heartburn within 3-4 days.
I had been looking for an alternative to xxxx for GERD for a long time, then I read about d-Limonene. I tried it...stopped taking the pharm drug overnight and haven't needed it since.
I have been a victim of Acid Reflux for about 7 years now. I stumbled to d-Limonene last week and I decided to give it a try. Today is day 4 without any heartburn.
Based upon a 2007 article in Life Extension Foundation Magazine (LEF.org) describing an holistic treatment for GERD, I took 1000 mg of d-Limonene every other day (10 pills total) for a 20-day period. My GERD is now almost unnoticeable.
After 6 days, taking this product every second day as recommended, my reflux problems have significantly abated.
Since taking the d-Limonene formula my reflux problem has virtually disappeared.
The D-Limonene enabled me to avoid a heavy rebound from going off of Protonix. These PPI's are very difficult to remove from one's system. The D-Limonene does work and it took about a week to make the transition. Now I only take the citrus about once a week, versus everyday. I suggest that a person take it everyday instead of every other day until you have made the transition.
This product is effective for GERD. It takes about 7-10 days to work 100% but you do experience relief before that time.
Posted by tick battler (Member # 21113) on :
Sorry to hear she is going through this. I can't help much but since my kids have recently developed stomach pain, I have started researching it. I came across a product called Glutegenics by Metagenics. Our LLMD has this listed as a supplment that may help with GI upset from meds. It has aleo vera and some other soothing things for the upper GI function.
Another thought - can you stop the Vit C for awhile? I think this can cause irritation from the acid.
Also, I remember years ago I had gastritis and even a sip of apple juice would hurt. I only drank water for a year and couldn't have any spices or acidic fruit. I was on prilosec and then nexium, which was much better.
tickbattler
Posted by 17hens (Member # 23747) on :
Dear Everyone,
You have no idea what it means to me to have all this input! So much more than ANY duck has given me!!
I wish you could all come over for dinner and let me thank you in person - oh no, I forgot, that was the me before lyme!
I have stopped giving her anything except probiotics since Wednesday, just to give her belly a break. Her acid is much better just in 3 days. That's good! (Still on Prilosec, Carafate and carbs though.)
But I'll start her on Ceftin from LLMD tomorrow and then work in gentle vitamins again slowly.
I will start by looking into the D-limonene. It sure sounds wonderful - those comments are impressive!
And I will stop the C.
I will print this thread and keep it on my fridge to refer to when needed. I'm willing to try everything here if necessary to help her.
I can't wait to watch her heal once her Bart is treated and gone! That will be a wonderful day!
(Please, all suggestions welcome!)
Posted by 17hens (Member # 23747) on :
I'd like to update you guys. Please read and then tell me what you think...
Last week, the LLMD had my daughter stop Rifampin and Azith. and started her on Ceftin to give her stomach a break.
Befor I started the Ceftin, I gave her 3 days off. No abx, no vits, nothing but Prilosec (40mg. 2xday) and Carafate ((up to 4tsp a day).
Things calmed down wonderfully! Not perfect but much, much better. But within a day after starting Ceftin, the acid started up again.
So I contacted her Gastroenterologist who put her on Protonix. He said one pill every morning.
First day, no acid !! Second day, acid in evening. Third day, acid in afternoon and evening.
Today, LLMD said to give Protonix in am and pm.
If that's the right amount of Protonix, why didn't the Gastro recommend that? (He's a really brilliant guy and very much aware of how my daughter is doing.) Or is that much Protonix not a good idea?
Signed, Unsure
Posted by tick battler (Member # 21113) on :
Sorry can't help with the protonix question, but wanted to say that 2 of my kids had bad stomach pain on azith. Can you let the stomach heal a bit longer without abx and then try to find one that is easier on the stomach? Rifampin never bothered my kids but the zith had to be switched to biaxin and then we were fine.
Hope this helps,
tickbattler
Posted by sammy (Member # 13952) on :
Protonix comes in 20 or 40mg tablets. Is she taking 20mg twice daily?
Also, it is common for doctors to start out with lower doses of medications then increase the dose later if necessary.
Posted by Carol in PA (Member # 5338) on :
quote:Originally posted by 17hens: If that's the right amount of Protonix, why didn't the Gastro recommend that?
It sounds like he was adjusting the dose, after observing the patient's response.
How did it go with the D-limonene?
Carol
Posted by 17hens (Member # 23747) on :
The bottle from the gastro says 40mg. to be taken in am.
I don't know what amount the scrip from the LLMD is written for. It's at the pharmacist's and they won't get it in until next week.
I didn't even think about mgs. so if she was taking 40mg. of prilosec in the morning and 40mg. before bed, could 80mg. of protonix be too much?
And although I found coconut oil and have added that to her breakfast, I have not yet checked into D-limonene.
When you asked me that, Carol, I thought, "hey, don't be in such a rush, it's only been like 3 days!" but now I see it's been 9 days! i can't believe it... where does time go?
yes, i must get on that d-limonene... thank you, carol.
I am so brain fogged right now, just not in a good place. I know it's all just excuses and I should be more careful with my daughter's treatment.
I just wish I didn't panic, I wish I knew if we're doing the right treatment for her, I wish someone, who knew what they were doing, could take over the responsibility for me for awhile, because I definitely don't know what I'm doing...
Sorry, guys, just having a little breakdown.
Posted by sammy (Member # 13952) on :
17hens, you are doing a great job taking care of your daughter. No one knows her better than you. No one else could possible care for her better than you.
It is difficult to watch the one you love so much suffer. No matter what illness they are facing, nothing can prepare you for that.
You just keep loving on her, keep learning, keep fighting. She will get better
Now, about the Protonix, call the pharmacy and verify the dose and directions for her new prescription.
40mg once daily is probably the most common dose but again, these are just guidelines, not absolutes. Your daughter may need a higher dose for awhile to get the symptoms under control. If you can, call and speak with her LLMD. It is OK to ask why he prescribed the dose and frequency like he did.
Hang in there 17hens. You are a great mom
Hugs to you
Posted by Beachinit (Member # 21040) on :
I have had reflux for years and have taken a ppi type med most every day for years. I have also been on zith for 3 months and it seems to make my GERD worse. Every couple of weeks I take a day off all meds and focus on detox and extra yogurt and that seems to allow me to go back to the zith. I also have lyme , bart and babs and have taken Bactrim and artemisinin for the babs for past 4 wks (along with zith and now doxy too). I think Babs strains the liver and slows the digestion and also may be making the GERD worse. As you go forward to treating your daughter for Babs you may see an improvement in the GERD eventually. Thats just my experience though. Your daughter seems quite fortunate to me.
Beachinit.
Posted by pab (Member # 904) on :
17hens,
I understand how you feel. I have 2 sons with Lyme and other medical issues, and I also have chronic Lyme. Some days, just getting through the day is all I can handle.
Posted by 17hens (Member # 23747) on :
OK, Carol!!! D-Limonene in hand!!! I'll keep you all posted!!!!
After 40mg. in am and 40mg. in pm of Protonix, she has not had any acid for 2 days. Woohoo!!
I've also been giving her protein shakes each morning and adding coconut oil. Can't tell if that's helping at all, but it sure tastes good
The directions for the d-limonene say "1 softgel per day with or after a meal". Carol, do you recommend starting with one every other day (reading your above post)?
Thanks for the support everyone! I'm feeling emotionally better today - what a relief! Please know that you all mean so much to me!
Blessings!
Posted by Carol in PA (Member # 5338) on :
I recommend following directions on the package, as I have not taken this myself.
In the reviews, people who were taking it with good results said that they took it every other day.
From what I've read, if it helps, you should be able to reduce the Protonix gradually.
I know of a number of people on these stomach meds, and it can't be good for them. You need stomach acid to digest the food.
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Just wanted to talk about reducing inflammation + healing instead of just covering symptoms.![[Frown]](frown.gif)
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