My daughter has amoebas - need advice!

Zizzle · Post by **Zizzle** » Tue Sep 16, 2014 12:02 pm

Just came from our integrative medicine doc. Got results of my 7-yr old daughter's CDSA stool test and OAT urine test. She has amoebas (Dientamoeba fragilis) and Candidiasis. 2 standard ova and parasite tests over the past few years never picked it up. GRR. Treatment will be rough. The drug proposed is an iodine-based fluoroquinolone!! (Iodoquinol/Yodoxin) We will treat candida with Nystatin after the 20 day amoeba drug. Stool test also showed high levels of Eosinophil Protein X, which can be caused by the amoeba. It may also confirm IgE food allergies (which we knew about - she's allergic to all legumes). I'm relieved to have answers, but totally freaked out. Anyone have experience treating this amoeba??

http://emedicine.medscape.com/article/997239-overview

I'm terrified of fluoroquinolones due to the tendon rupture and CNS toxicity potential. Is this risk worse or better in kids??

My doctor was basing her drug recommendation on Medscape's article, which stated Metronidazole was not as effective, but another recent article points to other potential (perhaps safer?) drugs like tetracycline and others. I have a call in to the pediatrician.

http://www.sciencedirect.com/science/ar ... 0712000255

Anyone have any experience with D fragilis? Any advice?

Post by **tex** » Tue Sep 16, 2014 2:19 pm

Hi Zizzle,

That's a heck of a note, but at least now you know.

Here's an article, but unfortunately it ignores the neurological risks. It does however also discuss the use of tetracycline:

http://www.uspharmacist.com/content/d/f ... s/c/35936/

Here's a slightly older article, with more detail, but it too appears to ignore the neurological risks:

http://pediatrics.aappublications.org/c ... e1034.full

Here's a more recent article that downplays the risks, but it too ignores the neurological risks.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3668199/

This is the only article written (or updated) this year, that I can find, and unfortunately it requires a paid subscription.

http://www.uptodate.com/contents/fluoroquinolones

Incidentally, there's another risk that I wasn't even aware of — fluoroquinolones apparently can double the risk of developing kidney disease. Of course, the absolute risk is still quite low, but . . .

http://www.sciencedaily.com/releases/20 ... 135311.htm

If you have a pharmacist you trust, they can be a very good source of information, because typically they know more about the risks associated with certain drugs than most MDs.

And finally, does your daughter actually show signs of a yeast overgrowth, or are you just going by those test results? Note this quote from the website at the following link:

Although the CDSA does test for yeast and hence is often used if a Candida overgrowth is a suspected problem, many top functional medicine doctors agree that this particular test is not particularly reliable for this purpose as yeast can be found in the stool of perfectly healthy people and it will often give false negative results, i.e. indicate that no yeast were detected when in fact the patient DOES have a significant intestinal overgrowth. One reason for this is because overgrowth of yeast is predominantly a problem in the small intestine and since the stool is formed in the colon, the yeast do not get caught up in it, and hence show up on examination.

I'm not sure that I would trust this test for a diagnosis of candida overgrowth.

http://www.ei-resource.org/laboratory-tests/

Tex

JLH · Post by **JLH** » Tue Sep 16, 2014 3:20 pm

What is a good test for candida overgrowth?

My GI thought I have geographic tongue not candida.

She also refused to write a script for LDN although she would for Imuran or 6MP! I think it is all about insurance and the same for the original prescribing doctor.

Zizzle · Post by **Zizzle** » Tue Sep 16, 2014 3:26 pm

The organic acids test confirmed the candida overgrowth. It confirmed mine too. She is a crazy sugar/carb addict.

Gabes-Apg · Post by **Gabes-Apg** » Tue Sep 16, 2014 9:41 pm

Maybe use high dose Vit C for the candida.

Zizzle · Post by **Zizzle** » Tue Sep 16, 2014 10:44 pm

It seems this medicine is not in the same family as fluoroquines, BUT it can cause optic neuritis, neuropathy and blindness!!!

So I looked for another alternative and found Paromomycin, but it causes hearing loss!!!! WTF!? Are all amoeba treatments totally toxic!?!

Tex, thanks for the article mentioning tetracycline. I didn't know it was completely contraindicated in patients under 8 due to tooth discoloration. Guess that's out!!

Metronidazole, although not fully effective, is looking better and better. I'm hoping my pediatricians find something I can't. There is a related drug that's more effective and you take only once or twice…but it's not approved in the USA and it can cause fainting and epilepsy.

My mom says people take Diiodohydroxyquin like candy in Guatemala. They ask for it when they think they are getting sick with a GI bug. But they don't take it for 20 days...

Ugh, I don't know what to do!

Update: A public health doctor/pediatrician friend looked into this and said the neuropathy and vision side effects MIGHT be able to be prevented by supplementing her with B6. Otherwise he said the proposed drug is a reasonable treatment. Her OAT test showed she had significant riboflavin deficiency, which is rare and almost impossible, even with the SAD diet, so we don't know what's going on there, but now I do know I have to give her a B-complex supplement. Hope I can find a kid-friendly liquid… Or maybe b-complex shots are in order since she won't be absorbing B vitamins through her intestines during the treatment?

Zizzle · Post by **Zizzle** » Wed Sep 17, 2014 12:00 am

BTW, from everything I'm reading it seems undiagnosed D fragilis is a MAJOR cause of IBS-D!! and perhaps MC?? It causes surface inflammation of the lining of the colon…

There seems to be better testing available if you know to look for it specifically. I think all MCers should be tested. I plan to test myself and my son soon.

Zizzle · Post by **Zizzle** » Thu Sep 18, 2014 11:17 pm

I had a long phone call with our pediatrician today. He was great. Said he researched the amoeba and treatments overnight, only to find I faxed him all the articles he found. Said he should have known I would have all the info. He's only seen 2 cases of D fragilis in his practice, one treated with metronidazole and relapsed, the other with Iodoquinol and did fine. He agreed that Paromomycin seemed to have advantages: more data on frequency of adverse events (<1%), 7 day dosing instead of 20, and fewer alarming side effects (ototoxicity instead of eye toxicity and neuropathy, among others). Said the enterocolitis side effect, if she gets it, would be temporary.

He was on the fence about treating the candida. He thinks the science isn't there, and chances are it'll just return after treatment. My doc says we are rebuilding the gut so candida won't come back. The way I see it is we're correcting the damage done by multiple rounds of antibiotics. Once the candida is down to normal levels, I think her normal immune system will keep it in check.

So I called the prescribing doc and she agreed to change the prescription. We will try to have it compounded for the proper dose (it comes as capsules). Otherwise, I may pour out half a capsule for one of her doses.

I also ordered liquid B-complex drops. Shes eating sauekraut, but will start a prescribed probiotic too. Will increase vitamin C and D. Any other thoughts on what I should do to get her ready for this treatment?

Zizzle · Post by **Zizzle** » Thu Sep 18, 2014 11:23 pm

My dad called the local hospital in Guatemala and learned that D fragilis is extremely common there. People dont get treated unless they are symptomatic. Their first line treatment is Metronidazole, but they admit it doesn't always work. The other 2 drugs they use don't exist here.

Our pediatrician said D fragilis is one of those infections you only treat if there are symptoms. When I asked about testing the family, he said only if symptomatic or if my daughter relapses. I think my son and I are prime candidates, but we'll see.

Gabes-Apg · Post by **Gabes-Apg** » Thu Sep 18, 2014 11:43 pm

Magnesium and Zinc to help the gut cope with inflammation and clear the toxins

SB Boullardi will help the gut cope with the treatment??

Post by **tex** » Fri Sep 19, 2014 9:16 am

Zizzle wrote:People dont get treated unless they are symptomatic.

That's what I thought. So does she actually have symptoms, or is she being treated because of her test results?

Also, the Candida will fade away, if she cuts sugar out of her diet. Drugs are unnecessary. Minimizing sugar and reducing carbs was all I did to get rid of it back when I was recovering.

Tex

Zizzle · Post by **Zizzle** » Fri Sep 19, 2014 9:54 am

Tex,
My daughter hasn't had a solid stool in 4 years. They are mushy at best, but watery and explosive are the norm (looks like MC D). She complains frequently of tummy pain after eating, but strangely never gets bloated or gassy. We'd been thinking it was her legume allergy all this time...

Her bowel habits were textbook perfect before her e.coli infection in Guatemala, and she never fully recovered. Makes me think post infectious IBS-D is actually this bug in a lot of people!!

Regarding the candida, cutting sugar and carbs out of a 7-yr old's diet is next to impossible, especially when it's clear that the candida is fueling her out of control cravings for sweets. I'm not saying I won't reduce sweets, but I would not be able to eliminate enough to make a difference.

Post by **tex** » Fri Sep 19, 2014 10:17 am

Zizzle wrote:Makes me think post infectious IBS-D is actually this bug in a lot of people!!

You may be right about that.

I forgot that all this started with a trip to Guatemala. Sorry about my poor memory, because that definitely changes the equation, and makes an amoeba infection much, much more likely.

I hear you about the sweets. Before my symptoms started, I craved sweets just like her. I'm convinced that the combination of plenty of sugar and Candida was the original cause of my leaky gut. Next to alcohol, sugar is the second biggest cause of leaky gut. There's a good chance that her allergies are almost surely secondary to (caused by) a leaky gut.

And I understand how kids and sweets can be inseparable once they develop the habit, but I would be surprised if you will be able to get any lasting resolution from the use of Nystatin, as long as her diet contains plenty of yeast-growing nutrients. Candida is opportunistic, and it's always present, so that all it takes to thrive is the proper diet, namely plenty of sugar/carbs. I don't envy your parenting job — that goes way beyond a full-time job.

Tex

Zizzle · Post by **Zizzle** » Fri Sep 19, 2014 10:47 am

My goal for the Nystatin is to kill off any overgrowth from her year of non-stop antibiotics for recurrent strep throat. The doc suggested sweetening her food and drinks with Stevia so she doesn't feel so deprived. She also said whole fruits were fine, just not juices. This will have to be a family-wide diet change, or the unfairness of it all will really upset her. Luckily she is a big meat lover, which is rare in kids. Veggies, not so many, but maybe if I douse them in butter and salt...

I spoke to a mom who had amoebas after a trip to Morocco years ago. She said the treatment was incredibly awful, so I'm considering flying my MIL down here for the week, in case my daughter can't attend school.

Zizzle · Post by **Zizzle** » Mon Sep 29, 2014 11:34 am

Update:

My daughter started the Paromomycin on Saturday morning, taking it twice a day. She has no trouble swallowing the capsules. It makes her proud to do such a grown-up thing.

She's had absolutely no side effects so far, which is surprising considering she's had antibiotic reactions in the past (penicillin, clindamycin). Her first bowel movement happened last night. It was more formed than her norm, and much less odor. Yay!!

She's also craving the fermented Saurkraut I buy from Trader Joe's, so she's getting her probiotics in too.

I'm so hopeful we'll have complete resolution of her GI problems, and maybe even an end to her mild legume allergy!

Next step? I'm asking our shared doc for the more sensitive ova and parasite test for me too. Our D has been almost identical in recent months, which makes me wonder whether I acquired the amoeba from her, OR the CDSA test I did 2 years ago didn't pick it up. I'm due for a re-check, and thankfully, my Blue Cross insurance pays for 80% of the test!!