Ok, I'm desperate. Any experience or ideas here? Stomach issues.

[Lizzie in Ma]

Update: Dr. called last night, our next thought is that is may be ulcers, put her on Prilosec, first dose last night, if it doesn't help, she will send her to a GI.

Bless you all for all your input and support, you've no idea how much it means to me.

 

Our dear 16 year old daughter had an undiagnosed case of Lyme disease that they finally figured out last August.

She has been on up to 2000mg of Biaxin, Plaquenil, doxycycline and Flagyl since then and until June 5th when her stomach was so bad we took her off everything. We had used probiotics all along as well as supplements to build her immune system, so we tried to protect her body while she took all that stuff.

Her pediatric rheumatologist says she has "post infectious disease syndrome" and recommended PT 3X a week with aerobics, strength training and myofascial massage. I don't know what to think, other than building her body back up is not a bad idea.

She has no food or other allergies.

 

The problem is, she is nauseous with stabbing pains in her abdomen and back and has been since June, getting worse. Very mucousy stool. (sorry TMI)

It gets worse when she eats or drinks anything. It is so bad, she quit her beloved internship at Old Sturbridge Village this month. She would NEVER do this unless she had no choice.

She has had negative abdominal xrays, ultrasound and bloodwork for cdiff, hepatic function, basic metabolic panel, lipid panel, cbc with diff, amylase, crp and lipase. It seems like our primary care doctor has given up, I've asked for a call about what to do next and waiting all day yesterday while dd was curled up in a ball on the couch. I emailed this morning.

Thoughts on what this could possibly be???? Avenues to investigate? anything?

Edited July 20, 2012 by Lizzie in Ma
update

[Isabella]

My goodness! You poor things! I can't suggest anything, but I wanted to give you and dd a hug! :grouphug:

 

I'm sure you'll get some suggestions, though. I really hope she gets better soon.

[MommyK]

I would seek another doctor's opinion. They shouldn't just shrug and give up. She is in debilitating pain, and needs help. I am so sorry you are going through this.

[catz]

I had a horrible stint with stomach (including an ulcer) and intestinal issues after many rounds of strong antibiotics. I was never dx with anything conclusive but IBS. Over time it greatly improved after using a flax based fiber and probiotics. I was off of dairy and gluten for a while, but I eat them regularly now without issue.

 

I wouldn't stop trying to get a diagnosis if you still feel you have roads to travel there (I had an upper endoscope, a full colonscopy, full bloodwork). I worked with a holostic practitioner for a while and that really helped me turn a corner.

[speedmom4]

My son just had an upper endoscopy for nausea, vomiting, diarrhea, and weight loss. The GI doc found several ulcers. One is particularly large. He also had blood work (CBC w/ diff and platelets, CRP-C-reactive protein, and Multi-chem-CMP, AST, ALT) which came back normal. I would push for an upper endoscopy because if she has a stomach ulcer she needs medication and diet modification to help heal that.

 

God Bless,

Elise in NC

[marbel]

I had a horrible stint with stomach (including an ulcer) and intestinal issues after many rounds of strong antibiotics. I was never dx with anything conclusive but IBS. Over time it greatly improved after using a flax based fiber and probiotics. I was off of dairy and gluten for a while, but I eat them regularly now without issue.

 

I wouldn't stop trying to get a diagnosis if you still feel you have roads to travel there (I had an upper endoscope, a full colonscopy, full bloodwork). ...

 

This sounds a lot like my son, except for the ulcer. He has always reacted badly to antibiotics.

 

Last summer he came back from camp with bronchitis and cryptosporidium and took zithromax and an anti-parasite medicine for it. After that he had terrible nausea and constant retching (dry heaving) for months. He couldn't go anywhere; every few minutes it sounded like he was about to vomit. Finally it just lessened and then went away.

 

The ending dx after numerous tests? Slow gastric emptying and IBS.

 

He takes probiotics and we are investigating cultured foods to help his gut bacteria. He also takes fiber supplements (we find the calcium polycarbophil from Costco works best for him). He has mild nausea and bowel issues all the time; he has learned to live with that. Sometimes he has spikes that are incapacitating to him but they are getting less frequent.

 

I'm sorry I don't have specific, helpful answers, just sympathy.

[Sandragood1]

In the Gut and Psychology Syndrome (GAPS) book, the author's goal is to heal the digestive system. You start with a restricted diet (cooked, non-starchy veggies, meat broths, and probiotics - no sugar!) and add to it as your body recovers. The author also recommends enemas - including enemas with probiotics in the water to add good bacteria to your system via the "back door." In addition, you add fermented foods to the diet to supply enzymes and more good bacteria to repopulate your gut.

 

There are websites that support this diet with much more information as well as recipes. The book is available at Amazon.

 

This diet may be just what your DD needs, and I suggest that you pursue something like this at home while you look for another doctor with more to offer.

 

Hugs to both of you,

 

Sandra

[NASDAQ]

Our dear 16 year old daughter had an undiagnosed case of Lyme disease that they finally figured out last August.

She has been on up to 2000mg of Biaxin, Plaquenil, doxycycline and Flagyl since then and until June 5th when her stomach was so bad we took her off everything. We had used probiotics all along as well as supplements to build her immune system, so we tried to protect her body while she took all that stuff.

Her pediatric rheumatologist says she has "post infectious disease syndrome" and recommended PT 3X a week with aerobics, strength training and myofascial massage. I don't know what to think, other than building her body back up is not a bad idea.

She has no food or other allergies.

 

The problem is, she is nauseous with stabbing pains in her abdomen and back and has been since June, getting worse. Very mucousy stool. (sorry TMI)

It gets worse when she eats or drinks anything. It is so bad, she quit her beloved internship at Old Sturbridge Village this month. She would NEVER do this unless she had no choice.

She has had negative abdominal xrays, ultrasound and bloodwork for cdiff, hepatic function, basic metabolic panel, lipid panel, cbc with diff, amylase, crp and lipase. It seems like our primary care doctor has given up, I've asked for a call about what to do next and waiting all day yesterday while dd was curled up in a ball on the couch. I emailed this morning.

Thoughts on what this could possibly be???? Avenues to investigate? anything?

 

Have they looked into somatic causes -- treated with an SSRI, a benzodiazepam, and behavioural therapy? It sounds like your dd has been through the wars, and it's not uncommon ime for stomach issues to linger after a very anxiety provoking time of life.

 

My brother used to vomit twice a day. It was because of a hiatal hernia that had caused part of his stomach to get sucked up into his esophagus. He wasn't nauseated though, just very sick. He was also tired all the time.

 

A friend of mine has had good luck with a dose of zofran and a dose of xanax when she feels a vomiting episode coming on.

[BrookValley.]

Sounds a lot like what my husband went through. He also had an undiagnosed case of Lymes, went on a pic line and was treated w/heavy-duty antibiotics (nearly a year's worth). The antibiotics messed with his liver quite a bit. Afterward, he started having similar pains as your daughter, and eventually ended up in the ER. He has gallbladder issues--gallstones and inflammation--and his having the organ removed in a couple weeks. Have they done an ultrasound of your DD's gallbladder?

 

I would also look into wheat/gluten and possibly dairy issues. Wheat can be very inflammatory, dairy can be very mucous-forming...and you don't have to test positive for an allergy to have an intolerance or other issue with these foods.

[Tap]

Have you been to a GI specialist?

[melissad2]

Have her stool tested for c-diff. Also maybe an ulcer from all the medications?

[suzanne44]

My 16 yr old daughter has been suffering from stomach issues for two years, also, though not as severe as your daughter's. Up until recently, we've not had good insurance. Recently, however, she was able to get a referral to a pediatric GI doctor who questioned her thoroughly, then scheduled a combined colonoscopy and endoscopy (at our local children's hospital, thankfully). While we haven't found the exact cause yet, it is helping us rule out things, so I'm thankful that we are making progress. Perhaps a referral might be helpful to you, as well.

[Denisemomof4]

I have a strong suspicion it is all the antibiotics. Has she been on a very specialized diet while being treated for the Lymes? I am so worried my dd will end up sick like this as she already has gut issues.

 

Dd is going to be seen by a Lymes Literate doc in Concord NH hopefully in November. Her first appt. Witha LLD is 9/10 and she will begin treatment then. Anyway, the doc on Concord Nh is also very good with gut issues as well as being a good LLD. If you are willing to make the drive and want her name for a secondor third opinion, let me know and I will PM you the information.

 

I am so sorry for your dd. If you can tolerate a VERY strict diet for her, I would definitely recommend The Body Ecology diet to try to get her entire system balanced again. I have two copies of the book and would be glad to mail you one.

:grouphug:

[Denisemomof4]

Also I have the name of an EXCELLENT dr in CT who has dedicated his life to helping kids with Lymes. I haven't spoken to him so don't know what his protocol is but I can get that name to you if you want.

 

i am waiting for Dr. zhang's book to come and am planning to use Traditional Chinese Medicine along with all the antibiotics. I wonder if he could help?

[Spryte]

Is she seeing a Lyme Literate doctor? An ILADS (not IDSA) affiliated doctor? I did not read the entire thread, I'm sorry, as I have limited time right now, so I don't know if you've addressed this. I don't think an ILADS doc would suggest post-Lyme syndrome.

 

C Diff is not easy to diagnose sometimes, and there can be false negatives. (I've survived recurring bouts of C Diff, and it's horrible!) ...You might consider checking out the C Diff support board - google it. Or if you want to go straight to supplements, I have sometimes headed off a bout with Oil of Oregano, and hefty doses of Florastor (which contains S. Boulardii, a beneficial yeast which basically eats C Diff.) Garlic and turmeric help with the inflammation and pain. And, of course, take the regular probiotics.

 

Have you sent her bloodwork to Fry labs in AZ? I have just begun treatment for the newly discovered protozoa - also tick-borne. It causes GI issues, among other things. I did not have all the symptoms, so that's not necessary, but here's a quick run down about it, so you can review your daughter's symptoms and see if she has any:

 

Protomyxzoa Rheumatica: Is a newly named protozoa that is a prodigious biofilm former that is incredibly difficult to eradicate. It creates a hypercoagulable state and when attacked it creates massive Herxheimer reactions with a tremendous increase in inflammatory cytokines and a worsening of hypercoagulability.

Sign and Symptoms: Cold hands and feet, often clammy, Poor capillary refill, skin color changes including pale, dusky, hyperemic (red), purple, mottled, HA, pain behind/in eyes, Scalp sores, Sinus congestion, PND, teeth pain, Palpitations, SOB, air hunger, dry cough, episodic and periodic, Abdominal pain, nausea, IBS, Bladder pain/dysfunction, interstitial cystitis, Joint and muscle pain, weakness, twitches, Profound fatigue, complete loss of aerobic exercise tolerance, Sweats (night/day), chills, flushes, dizziness, Insomnia, profound brain fog, poor balance, Anxiety, panic, OCD, irritability, agitation, impulsivity, ADD, emotionality, Hypercoagulability

that has been associated with diseases such as CFS, Fibromyalgia, Scleroderma, Rheumatoid Arthritis, Lupus, Multiple Sclerosis, ALS, Parkinsons, Autism, CIPD, and others

 

 

 

 

ETA: her symptoms really sound like C Diff. :(

 

But another avenue for testing would be a GI panel from Diagnos-Techs. If it's not C Diff, it could be intestinal dysbiosis. A great integrative doc would be helpful on that front. My LLMD referred me to one who often works with her, and it tremendously helped my dysbiosis (that was pre- C Diff)...

 

Denise, are you thinking of Dr J in CT? He is a hero!!!

Edited July 19, 2012 by Spryte

[Denisemomof4]

This sounds a lot like my son, except for the ulcer. He has always reacted badly to antibiotics.

 

Last summer he came back from camp with bronchitis and cryptosporidium and took zithromax and an anti-parasite medicine for it. After that he had terrible nausea and constant retching (dry heaving) for months. He couldn't go anywhere; every few minutes it sounded like he was about to vomit. Finally it just lessened and then went away.

 

The ending dx after numerous tests? Slow gastric emptying and IBS.

 

He takes probiotics and we are investigating cultured foods to help his gut bacteria. He also takes fiber supplements (we find the calcium polycarbophil from Costco works best for him). He has mild nausea and bowel issues all the time; he has learned to live with that. Sometimes he has spikes that are incapacitating to him but they are getting less frequent.

 

I'm sorry I don't have specific, helpful answers, just sympathy.

 

Cultured foods definitely help. D you also give him a good digestive enzyme? I would definitely recommend this along with 1 tsp organic apple cider vinegar in 8 oz water 3x per day. It helped my mom's colitis and it cured my ulcer and dd12's GERD. Tere are some who can't tolerate it, though.

[Denisemomof4]

Sounds a lot like what my husband went through. He also had an undiagnosed case of Lymes, went on a pic line and was treated w/heavy-duty antibiotics (nearly a year's worth). The antibiotics messed with his liver quite a bit. Afterward, he started having similar pains as your daughter, and eventually ended up in the ER. He has gallbladder issues--gallstones and inflammation--and his having the organ removed in a couple weeks. Have they done an ultrasound of your DD's gallbladder?

 

I would also look into wheat/gluten and possibly dairy issues. Wheat can be very inflammatory, dairy can be very mucous-forming...and you don't have to test positive for an allergy to have an intolerance or other issue with these foods.

 

I am waiting for the Concord docs to give us the diet plan but I believe it is an anti-inflammatory diet or the Candida diet. Neither allow gluten, dairy or sugar.

[dancer67]

See a GI Doc. Test for Cdiff. If everything else has come back negative, ask for an endoscopy and colonsocopy. If all clear, then it is probably IBS.

 

She is experiencing all the symptoms I had for 2 months. IBS will not show up on anything. You have to get a bunch of tests done first to rule it out.

 

I feel for her. Stomach issues are NO fun at ALL.

 

I know you are in MA. You mentioned Sturbridge Village. I do not live to far from there.

 

If you are close to UMASS Medical center, put a call into Dr. Christopher Marshall. He is my GI Dr. If you want to PM me, I can give you my name and tell the appt desk I sent you.

 

He is EXCELLENT.

 

He also has an office in Southbridge. 1-508-765-1600

UMASS-1-508-754-1956

 

I prefer Southbridge. But since that office does not take my new insurance, I have to drive to Worcestor to see him.

 

:grouphug:

[sbgrace]

My son was hospitalized on IV antibiotics for two weeks and then sent home with heavy duty antibiotics for another month. We did probiotics and all we could do but afterward he had major issues. They cultured him for tons of stuff including c. diff and all were negative. I was told he would settle down but it didn't. Eventually, a few months later after continued issues, we saw a doctor at our local hospital who ran a Metametrix Comprehensive Stool and urine. Those tests ID'd the specific bug he picked up and how to treat it. This is what I would do for your daughter if you can. Metametrix may know of a doctor in your area that uses their lab. Our insurance covered it out of network though. I do know of a way to do it outside of that if you would like that information.

 

I would do this prior to endoscopy and those types of invasive tests if you can. I'd start simple first especially given the high probability in my mind it's something picked up while on the meds. The metametrix will pick up h. pylori too.

 

I wanted to mention that my son's c. diff cultures in hospital and post hospital (several of them) were all negative. Later we did get a positive c. diff. It's possible he had it and the probiotics masked it enough those cultures were negative. It's also possible the bug the bacteria that was causing all the issues (that metametrix id'd) was crowding the c. diff enough to make the cultures negative. I don't know but the GI said sometimes you just don't pick it up on culture. Metametrix, though, should pick it up as they use DNA and catch anything in there. I always feel like I need to add that we ran Metametrix on the entire family after my son was positive for some nasty stuff as I was paranoid he had given it to the rest of us. Everyone else was negative for everything (well, my husband had h. pylori). That test will only show what's actually there. It's very good.

 

Beyond that, though, I've been on several of those meds. They are nasty for the gut. It is possible she's just recovering. What probiotics are you using? Any other treatments?

 

I know how hard it is to watch our kids suffer. I hope an answer comes soon. :grouphug:

Edited July 19, 2012 by sbgrace

[Guest jcreasy]

We have a wonderfully gifted practitioner here in Georgia. He is a Chiropractor as well as an Applied Kineseologist. He is trained in NAET (allergy elimination), phobia clearing, etc. I have not come across anything that he cannot treat. Through Kineseology (muscle testing) he can actually communicate with your body to determine what is wrong.

 

Years ago I had a problem with a horrible pain in my stomach whenever I would eat meat of any kind. I went to the Gastrointerologist and he put me on Protonix 2x/day for acid reflux. I didn't think that I had any symptoms of acid reflux but figured that he knew more than I did, so I took it. After taking the medication, I would feel bad intestinally after eating. I told him about it and he just shrugged his shoulders and said, "I have never heard of that".

 

After having an ultrasound done of my gall bladder and finding out that it was fine, my sister took me to her doctor (the one mentioned above....who is now mine too!) He asked me a few questions, muscle tested me for/with Rolaids, which came back that I didn't need them. So that alone ruled out too much acid. He was able to tell me in a matter of twenty minutes that my proton pump was not making enough stomach acid to properly digest my food. He told me of a supplement called

Hypo-D from Nutri-West (available on Amazon.com)to take before each meal. I took it and no pain! I only had to take it until the pump got back to working order and now I don't need it at all.

 

If you have a doctor like this in your area, I would check it out. I recommend ours to everyone that I know! He has an office in Peachtree City, GA as well as in NJ. His website is www.doccrane.com

 

Good luck and I hope you find some answers soon! My DD (16) has a friend who is in a very similar situation as yours, but her parents aren't open to alternative healing. Sad :(

 

Julie

[marbel]

Cultured foods definitely help. D you also give him a good digestive enzyme? I would definitely recommend this along with 1 tsp organic apple cider vinegar in 8 oz water 3x per day. It helped my mom's colitis and it cured my ulcer and dd12's GERD. Tere are some who can't tolerate it, though.

 

Thanks. I have tried vinegar but he has such a hard time getting it down. I should try again though; it's been a while.

 

His GI specialist was not encouraging toward digestive enzymes. I am only familiar with the papaya type that I've tried myself and found unhelpful. Do you have a specific name or type to recommend? I'm not against trying something outside the doctor's recommendations as long as the doc is not specifically recommending against it. Wow, what a sentence but I think you kwim.

 

Tomorrow I'm going to finally get to Whole Foods where I hope to find kefir grains!

[Tiramisu]

:grouphug: Bumping so you can get even more help.

 

Our dd is also having some similar issues and, most recently, significant weight loss, but she has no significant antibiotic history or lyme (that we know of). We have just started testing.

 

Our ped GI mentioned the same tests you've had, done in a step by step manner. The two things you haven't mentioned that our doctor spoke with us about is 1) lactose testing and 2) endoscopy (this will be the last step if nothing else helps).

 

I think I remember hearing that lactose intolerance can come from bacterial infections and the use of certain antibiotics. If you've already given up dairy this wouldn't be an issue for you.

 

Endoscopy, though invasive, could rule out so many things--including celiac, h-pylori, developing allergies, and ulcers--that it may be worth it.

 

About the use of an acid-reducer, our GI would want us to use it for only two to three weeks to see if it helps. If it doesn't, we stop, and proceed to the next step. If it does, we continue for three months to allow healing.

 

Meanwhile, dd was given zofran to help ensure that she does not keep losing weight. She is to take it only when she is so nauseated that she feels she cannot eat.

 

FWIW, the only time I saw mucous was when I had cdiff. Each time I relapsed, that would be the first sign. Like your dd, I was also on flagyl and taking lots of probiotics, having researched the types that were effective against cdiff, but vancomycin was what finally knocked it out. One ten day course and it was gone for good, but I continue to take probiotics faithfully. Vancomycin is known for being a strong antibiotic so I was nervous about taking it, but the bad side-effects of it are primarily when it is given by IV. I am sensitive but had absolutely no side effects with it. It was a dream compared with that nasty Flagyl.

 

Please keep posting updates. I hope you get some answers soon so your dd can feel better. :grouphug:

[Denisemomof4]

Thanks. I have tried vinegar but he has such a hard time getting it down. I should try again though; it's been a while.

 

His GI specialist was not encouraging toward digestive enzymes. I am only familiar with the papaya type that I've tried myself and found unhelpful. Do you have a specific name or type to recommend? I'm not against trying something outside the doctor's recommendations as long as the doc is not specifically recommending against it. Wow, what a sentence but I think you kwim.

 

Tomorrow I'm going to finally get to Whole Foods where I hope to find kefir grains!

 

We use the papaya type with great success. They are a huge help to dd12 and I both. I also take them like Tums when my stomach is upset and they work.

 

I would recommend you go to iherb.com and do a search for digestive enzymes and read the reviews.

 

If you put 1tsp of AVC in 8-10 oz water, hopefully your son won't notice it.

[justamouse]

I would seek another doctor's opinion. They shouldn't just shrug and give up. She is in debilitating pain, and needs help. I am so sorry you are going through this.

 

:iagree:

 

The mucous is in response to inflammation and irritation. Something is wrong-I'm betting the antibiotics ripped her system up. I would get another opinion with a GI Dr.

[Tiramisu]

:iagree:

 

The mucous is in response to inflammation and irritation. Something is wrong-I'm betting the antibiotics ripped her system up. I would get another opinion with a GI Dr.

 

There is something called a sigmoidoscopy--I hope I have that right. With it, the doctor can see the last section of the bowel without having the patient go through the ordeal of a colonoscopy. It can be done right in the office by a GI doctor with no prep other than two Fleet enemas, which in my case were painless even with an irritated bowel. It is very quick and only slighly uncomfortable--except if they decide to go around the corner. That part hurts but pain reliever can be given ahead of time if it's even necessary to go up that far. With this examination, you may be able know right away what's going on. They will be able to see any characteristic marks and take samples.

[marbel]

We use the papaya type with great success. They are a huge help to dd12 and I both. I also take them like Tums when my stomach is upset and they work.

 

I would recommend you go to iherb.com and do a search for digestive enzymes and read the reviews.

 

If you put 1tsp of AVC in 8-10 oz water, hopefully your son won't notice it.

 

Will do. Thanks!