Anyone have any experience with your child having the parasite Dientamoeba fragilis? - Mothering Forums

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#1 of 26 Old 11-19-2010, 11:30 AM - Thread Starter
 
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My daughter (10) has none of the symptoms that normally go along with it. Doctors don't seem to know much about it. I'd appreciate any help here.

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#2 of 26 Old 11-19-2010, 11:46 AM
 
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My son had it. It's hard to get rid of. It does have health effects so I would want to treat personally (and did). That said, it's a bear to get rid of unfortunately. We tried (and failed) several things including flagyl which was a nightmare med. Badbugs is a website online that covers fragilis (and b. hominus which my son also had) but it will freak you out to read or at least it did me. We finally beat this with a long and high dose Alinia. I would research carefully and dose long or not at all if you do try Alinia because in my opinion it is the only hope in the US to get rid of this bug and if you do it to short or low dose and fail I don't know how you would get rid of it. I don't think you would actually. This bug will develop resistance to anything used so you have to hit it hard and long enough. In my research b. hominus (very common w/fragilis and we thought he just had fragilis on the first round of cultures as it didn't catch hominus that was there. I think that was possibly because I didn't know to collect the very end of the stool carefully) particularly can't be killed by anything in a cyst stage and that lasts close to a month or more. So to be effective you have to do Alinia longer than any cyst could survive and then long enough to kill past that point in the "killable" stage. I know we did over a month but I can't remember the exact length. My doctor and I did a lot of research to finally kill those. I guess I'm saying if you don't have a doctor who will do Allinia for over a month at adequate/high dose I wouldn't even try to treat this as you'll just make a more difficult to kill parasite. I know I'm a barrel of good news! I'm sorry. I don't have good feelings about these bugs because this has been one of the most stressful things I faced (among many) with this kid. Had I known of Alinia initially though it might have lowered the stress.

 

Fragilis is carried in pinworms. I'd treat her for pinworms just in case as this is the only way it can be spread (to others or back to herself). I'd do that now whether I was planning to treat the fragilis or not. I would do it even if she didn't "show" them as well. It can't hurt. You need two doses and you can treat those with over the counter treatments.


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#3 of 26 Old 11-20-2010, 02:03 PM - Thread Starter
 
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Thank you SO much! That is really helpful. Yes, it's bad news, but I'd rather know the truth. I don't know why/how she got this, but I think she is susceptible to it for some reason. Luckily, no other symptoms though. Thanks again.

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#4 of 26 Old 01-18-2011, 10:11 PM
 
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@sbgrace: I’m so glad I found this thread!  You seem to be a wealth of information about d. fragilis.  Our 7 yr. old daughter has also been diagnosed with this, but not w/b. hominus (the stool analyses were done at Doctor’s Data and then Genova, so perhaps they missed it).  We’re trying to determine the best treatment plan.  The pediatrician suggested Alinia, but is amenable to other options and encouraged me to “do my research” and get back to him.  We haven’t discussed dosage at all.  BTW, we both have it, and I underwent treatment w/Flagyl, too.  It seemed to alleviate my dd's symptoms (after the harsh side-effects wore off), but DF turned up again in a stool analysis 3 mos. later.  (I made it all of 2 days on Flagyl before I wanted to call an ambulance.)  We also were treated for pinworms, although I’m not certain that we ever had them (we may have been infected during travel in Turkey).  I’ve read the endless accounts of treatment failures on badbugs (very distressing) and other web pages; and I’ve found info from doctors, mainly in Australia, who treat this on a regular basis, but when it comes to children, I can’t seem to find any consistent verifiable information about a safe, successful treatment protocol.  How did you and your child’s pediatrician come to a decision about using Alina and for giving an extended, high dose?  Do you know of specific research or a reliable source that I could show our doctor?

Also, since being treated with flagyl, our daughter has developed a horrible Candida infection, so I’m really fearful about what will happen when she starts antibiotics again.  She’s on a restricted diet, and I’ve been giving supplements, but it doesn’t go away.  (I’ve also just read that protozoal parasites feed on probiotics, so not only have I been wasting money, I’m losing an optimal line of defense against Candida.)  Did your son have any problems with Candida?  I guess it’s worse for girls (her infection is vaginal and intestinal).

Last, the stool analysis shows her fecal triglycerides are off (she’s not absorbing fats), since taking flagyl, and I don’t know whether that is from Candida, DF, or s/th else.

Any feedback/insight you may have is most appreciated.  Sorry for the lengthy post (and for the blank post below--I'm a newbie here).

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#5 of 26 Old 01-18-2011, 10:20 PM
 
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@Mama Soletra: Will you keep us posted on what treatment was used and whether it was successful?  Thank you & GL!

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#6 of 26 Old 01-18-2011, 10:52 PM
 
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mar78--I'm sorry for your experience and glad you found us here. It would have helped me to have someone tell me they got rid of it in their child and I can tell you that we did. Badbugs freaked me out to put it mildly! Honestly, this "thing" has been so incredibly stressful and traumatizing to me! Still gives me knots in my tummy to write fragilis or hominus!

Flagyl...nearly killed me. I have never been so miserable in my life!

fragilis may well be messing up her fat metabolism. Once you treat and give her some healing time you'll know better how to proceed with that. That said, do you know she was absorbing fat prior to the infection and treatment? I guess you probably do given she was ok when you originally found the fragilis? My son doesn't metabolize fat but he's got metabolic issues in that area. Usually when they run fecal fat tests they want you to track the fat eaten in the day so it could also have been she had a high fat day and so had excess in stool. Or there could be an unrelated issue. I don't think you can determine that right now unfortunately.

Candida...isn't my son's nemisis or hasn't been (he's more of a bacterial and (as it seems) parasite kid). I do heavy probiotics though including florastor (which is good with yeast and antibiotics both) on antibiotics and post. I did that with the fragilis/hominus too. That's because I've seen what happens when you do antibiotics without probiotics and didn't want to go there again (my son it's a bacterial mess rather than yeast or has been in the past). The badbugs stuff did give me pause but did probiotics anyway.

Here is what I think I would do in your place: treat the fragilis (hit it hard and long...more later) and then follow up with a yeast busting treatment and heavy probiotics.

For the fragilis yes do Alinia but do it long--as I posted above like 32 days or 35--or don't do it! You don't want resistance to Alinia. My son initially tested positive to fragilis. We did Flagyl (horrible, horrible stuff...horrible as you know) and then on the follow up testing when I thought he was better he was actually also positive to hominus! I think we just missed it on first culture and so does his doctor. I didn't know you have to get the last bit of stool for hominus (and that you have to have two 3 day genova collections in the case of cultures) to know you're negative. Since these bugs like to travel to together I would assume (treat as if) I had both in your place knowing how it turned out for us. If you do short Alinia you can make an Alinia resistant Hominus (if it's in there) or fragilis (not sure on life cycle of fragilis...hominus when it came up freaked me out even more!) and then I think you're out of luck treating in the US. I really do. So hit it long or don't do it at all if the doctor won't agree with it.

Oh, I did read that one of those bugs (Or both) feeds on fat. So we did a fat digesting enzyme (I think Enzymedica's one for fat digestion...I can't remember the name...may have had lipi something in it...) or two with each dose of antibiotic I also low fat with him while treating. I don't know if any of that was necessary. I was just really afraid we wouldn't kill this thing. Terrified!

Alinia, by the way, was a breeze to take for all of us (long story...we all did both Flagyl and Alinia). A breeze--even for that long time. Nothing like Flagyl. It's incredibly expensive though to warn you. I would not dose short (dosage or time frame) for cost. I would just save up honestly until I could do it. Without insurance we wouldn't have been able to do it.

I was careful to make sure he didn't reinfect (stools with careful handwashing, handwashing in the morning in case he was scratching in his sleep, changing sheets (hot wash/dry), etc.)

Then when done with Alinia you can do a candida treatment. Some like grapefruit seed extract for yeast. P73 oregano oil may work as well (we've used that for my son's bacterial issues...I know it does yeast too). Florastor is great for yeast. Any antifungal (grapefruit seed or oregano) will kill it. You'd need to dose three hours after each dose of those antifungals and then well after. I keep my son on Florastor. He does it with antibiotics as well and did with the Alinia.

I hope that helps you and I'm happy to help in any way I can. I know this is horrible to deal with!
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#7 of 26 Old 01-18-2011, 10:57 PM
 
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One more thing...my doctor told me that he's treated 5 people (including my son) for b. hominus/fragilis. All of them got rid of it with long dose Alinia. He thinks the reputation for not being able to beat these bugs is because doctors are doing Alinia but not long enough. I suspect most are doing Flagyl based on that badbugs site! At any rate, long or don't do it!! hug.gif

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#8 of 26 Old 01-19-2011, 07:04 AM
 
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sbgrace:  This is so helpful--I can't tell you how much I appreciate your advice!  My main question is: How did you decide on the dose and length of treatment (32-35 days)?  Where did you get that information?  I would like to show my doctor something concrete (research, medical literature, etc.). (Alternately, possibly my dd's pediatrician could talk w/your son's pediatrician, but I don't want to inconvenience anyone.  BTW, we're in NYC.)

 

Re fat absorption: my daughter showed no sign of that w/the first (pre-flagyl) stool analysis.  So, we'll see.  Where did you read that DF feeds on fat?  Very useful info.

 

Re b. hominus:  it didn't show up on either of the two (three day- seven vial) stool analyses, which doesn't mean it's not there.  I wasn't aware of the collection technique until reading your post.

 

Re Candida: we've tried oregano oil, with some success and also coconut oil (and if I could get dd to eat raw garlic, I'd do that too!).  It just seems that once this thing has dug in, it's extremely hard to eradicate/bring back in balance.  I'll focus on the Candida exclusively after treating the DF.  My dd has been taking high-dose probiotics ("Ultra Flora Plus DF" and others) throughout, but it seems to make no difference.  Her last stool analysis showed low or no growth of precisely what I've been giving her!  That leads me to believe there's s/th to Leo Galland's assertion that DF feeds on probiotics.  However, I've recently read that the prebiotic Saccharamydes boulardii (sp?) is immensely helpful in treating amoebic/protazoal infections, so I'm continuing and upping the dosage.  I'll check out Floraster and your other recommendations for post-DF treatment (and maybe I'll find new info on probiotics and protazoal infections and reconsider).

 

Great advice about avoiding reinfection.  Sounds like I'll have to be as diligent as when we (supposedly) had pinworms.  

 

I've been reading about DF for months now, and your posts are the most heartening and useful information I've found.  Thank you so much!!  And, thank you for the welcome to MDC--so glad I joined!  All the best.

 

 

 

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#9 of 26 Old 01-19-2011, 07:50 PM
 
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Well, the length I mentioned was based on what I read about b. hominus cyst stage and how it (in cyst stage) survives in test tubes full of anti-parasitics. The research I found indicated it can't be killed in cyst stage essentially and duration of cyst stage was a range. b. hominus +cyst b. hominus +test tube +cyst maybe? This was actually summer before last that my son was infected so I didn't save any of the links. I know badbugs had something on there about long dose Alinia being effective but at the time anyway she didn't specify what doses and I can't bear to go back there to check! I think, though, reading that was what lead me to learning more about what long dose might mean. But your labs don't say hominus so none of that will likely help you with the doctor anyway!

My suggestion is to look up life cycle of fragilis--particularly how long the cyst stage lasts if there is a cyst stage or anything you can find about stages and how susceptible those stages in the life cycle are to treatment. How "open" is your doctor? I really don't know how long for fragilis alone at all because when we got to Alinia we knew he had hominus and I *think* it's a tougher bug than fragilis. i do know hominus was missed in my son but that doesn't mean it was missed for you guys. I'd feel more confident of that if you had known to collect the end stool. Hmmmm...it's hard because I wouldn't want to underdose hominus in length because I really think Alinia is the one shot for that one in the US. Ugh. That's hard. I don't know where our doctor got his information honestly. I know that I was freaking out after reading badbugs (and failing flagyl...that's when I read badbugs...double freak out!) and I came in with all that information about cyst stage. Honestly, I wasn't calm or cool and he may have done it just based on my asking or he may have already intended. I got the impression when I talked to him last that his other patients he's treated for this were after my son. He said he doesn't see it often. When he does he treats it successfully long dose.

On the yeast. Here is the thing about yeast--bodies naturally keep yeast in check when they are healthy. When they are stressed or ill you struggle with yeast. Most people keep struggling until they address the underlying "whatever" that is stressing the body. That underlying thing may well be this infection. So you may find the yeast battle easier when you've addressed the parasites. On the probiotics--it's possible that brand (I'm not familiar with it) isn't one of the few that survive digestion to make it to the intestines. Most die in transit. There are a few strains proven to survive and "work" when they get there. You want one that has the research showing it lives. Oh, florastor is Saccharamydes boulardii! It's what I would recommend for you--proven effective (survives), great with yeasts and bacteria both, survives antibiotics. So you're on the right track I think. Other brands I know have proof (not as great for right now though in this situation) would be culturelle, klaire labs probiotics, and I think acidophilus pearls maybe (I've not checked into their research in depth like the others). None of those will survive the antibiotics. Florastor/s. boulardi will. It will not survive antifungals though (yeast treatments, etc.).

I wish I had more information for you to present to your doctor on the fragilis.


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#10 of 26 Old 04-14-2011, 08:49 AM
 
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Dear mar78,

 

I unfortunately have recently become infected with D. Fragilis.  Did you use the long term Alinia treatment that "sbgrace" talked about in her reply to you?  Was it successful for your child?  If not, did you use some other drug?  I tried Flagyl, the side effects were awful and it did not clear up my infection...

 

 

Best wishes,

David

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#11 of 26 Old 05-09-2011, 09:31 AM
 
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Hi David,

I am wondering where things stand with your diagnosis of dientamoeba fragilis.  I was just diagnosed and have started a course of doxycycline.  I'm hoping that you have healed by now and are feeling fine.  I'd love to know how the healing went for you.  Thanks.

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#12 of 26 Old 08-23-2011, 10:54 AM
 
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Hi there,

I just wanted to add my experience to this discussion.  Perhaps my experiences can help someone else.  This thread and a couple of members here have helped me enormously during my whole ordeal.  Thankfully I am now parasite free.

 

Back in January, 2011, I had a bout of diarrhea that lasted about a week.  The diarrhea went away, but for many weeks after that I felt unwell - low appetite, low energy, feeling unwell, etc.  In April I finally went to the doctor.  She did a stool sample that came back positive for Dientamoeba Fragilis.  I was put on a 10 day course of Doxycycline.  The Doxycycline nearly killed me and in the end did not get rid of the parasite.  I saw several doctors and 1 specialist - they didn't know how to treat this parasite or else they thought it didn't need to be treated.  Finally in July, 2011, I was referred to a parasite specialist.  He put me on a week long dose of Humatin and a 3 day dose of Alinia.  I had very minimal side effects on these two drugs and started to feel better during treatment.  It's been 6 weeks now and my most recent three stool samples came back negative for all parasites.  I will likely do another test in a month or two just to make sure that the parasite is gone, but I am feeling well and my symptoms are gone.

 

I am so sorry if you have to go through this - it is very difficult.  Be careful reading the Bad Bugs website - it is full of good information, but it scared me to death. Good luck to anyone having to deal with this parasite.  But have faith - you will get through this.  With the right doctor and the right drug you will feel well again.

 

Anne

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#13 of 26 Old 10-15-2011, 11:57 AM
 
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Would like to hear follow up stories on treatment for this nasty bug.. My son was just dx'd with it - finding the right treatment will be challenging, he has autism and is very sensitive.. Would love to know if anyone has tried diatomaceous earth for it?

 

Thanks!

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#14 of 26 Old 11-05-2011, 01:49 PM - Thread Starter
 
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It's been a year since her dx and my daughter still has it. I saw a new doctor who consulted with a specialist who said treatment is too harsh and doesn't usually work so as long as it's symptom free to just leave it alone and it usually resolves itself. We're going to retest in six months months.


My only concern right now is that she has slightly low iron. I'm wondering if it could be related to the parasite. I have found nothing that links those. Low iron can be from other parasites but they've never found any other one in her stool. And that's with three different tests over six months.

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#15 of 26 Old 11-09-2011, 05:37 PM
 
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Have you heard of Bach and Patterson homeopathic bowel nosodes? I have no experience of them, but they sound a lot better than fecal transplants!

 

 

 

Quote from the above link:
The Bowel Nosodes are a series of homeopathic remedies made from human intestinal flora, developed first byDr. Edward Bach and continued by John Patterson and his wife, Elizabeth from 1920 until 1960. These remedies were used chiefly in British Homeopathic practice but after some years of neglect they are gaining more favour, especially now with
the issues of allergies and antibiotic damage prevalent in today's patients. Their field of action is much broader than their name suggests, with indicating symptoms arising from the whole system rather than just the bowel.

 


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#16 of 26 Old 12-10-2011, 07:15 AM
 
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I just discovered this thread. my 5 yo has had DF for almost a year, we went with a natural nutritional treatment first which did not work. finally saw our regular pediatrician about it 6 mos ago and he put my son on a 3 day course of Alinia.  I should have been more diligent about repeat testing. I suspected he still had it and we just did another stool test that confirmed positive. Now the pedi wants to do 10 days of flagyl and I'm worried it won't get rid of it either, especially after reading badbugs and this thread. and now I'm worried he has Alinia-resistant DF!! any advice on what to do? should I try the flagyl? ask to do a longer course of Alinia?? Thanks!!!!

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#17 of 26 Old 12-10-2011, 01:00 PM - Thread Starter
 
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But jak, does your son have any symptoms? Is it causing him problems. I spoke with a doctor who has dealt with this before and he said when it is symptom free it's actually best (and safest) to just leave it alone and it can resolve itself after time in children. The treatments are pretty extreme from what I understand. And I did one of the strong medications on my daughter and it did not work. That's how it usually goes, so it's best to just leave it as long as there are no issues.

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#18 of 26 Old 02-27-2012, 10:36 PM
 
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My daughter is 5 and has tested positive for DF.  Our doctor is recommending 20 days of iodoquinol.  Has anyone tried this?  I haven't seen this mentioned in any of the above.  Should  I try this before Alinia?  Has anyone tried idoquinol and been unsuccessful?  We haven't started her on anything yet, so I want to figure out the best way to begin this.  Praying....

Thank you for any advice.....I'm curious what treatment mama Soltera tried so far.....nothing has worked?

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#19 of 26 Old 06-04-2012, 10:25 PM
 
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HI there, 

 

I am interested in hearing some stories of treatment options.  My daughter was diagnosed with dientamoeba fragilis when she was 18 months and we attempted to treat her with iodoquinol.  She had a very severe reaction to this medication - she had peripheral neuropathy and a large pigmented, blistered rash on her torso.  It was a 21 day course she was meant to be on, but we stopped obviously after the 7th day.  

 

She is now 3 years of age.  She has continued to have bouts of diarrhea (yellow and mucous) on and off since, and I am desperate but terrified to try her on another treatment.  I have read all your stories about and I am thinking to avoid the flagyl based on other experiences.  Can anyone help please?  I am feeling desperate and stressed!  I am sick of seeing her suffer with discomfort.   

 

Also, does anyone have any diet ideas?  i have read it is important to stay clear of carbohydrates which I will attempt to start in hopes for the current symptoms to be reduced. 

 

Thanks for all your help.  I really appreciate it! 

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#20 of 26 Old 06-06-2012, 10:22 PM
 
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mplog. I'm sorry the iodoquinol was not possible with her. My son's d. fragilis survived flagyl and it was a horrible drug when I took it (he did not have much of an issue with it). My son did a very long dose Alinia (easy, easy drug) but it was prescribed for b. hominus rather than fragilis alone. I have looked not too long ago and didn't see it mentioned for fragilis alone anywhere. I am not at all sure what to suggest for her and I so wish I did. Humantin? Is that used in kids? I'd want to kill it if I could. Idoquinol has some specific risks you won't find in other treatments. The Flagyl was horrible for me but it was just sick out of my mind GI effects...nothing like the idoquionol serious reactions.

When we did our treatment I did a low carb and low fat diet during treatment. I also did digestive enzymes targeted to both carbs and fats with the medication. I think b. hominus was a fats eating bug and fragilis a carbs eating one but I may be remembering it wrong.

The bad bugs site freaked me out too as a pp said. I found it after he failed flagyl and was absolutely terrified. Still, if anyone knows of new treatments it would be there...I'm afraid to look at the site again though. Honestly, the parasite thing changed me and thinking about them still makes me anxious today. I wish I didn't know those bugs existed!

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#21 of 26 Old 10-25-2013, 03:51 AM
 
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Interesting reading this. My daughter who is 3 has just had tests confirm she has this. Finding out what the treatment option is tomorrow and we're in Australia.

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#22 of 26 Old 06-02-2014, 10:55 PM
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Originally Posted by Shelly C View Post
Interesting reading this. My daughter who is 3 has just had tests confirm she has this. Finding out what the treatment option is tomorrow and we're in Australia.
I'm wondering if anyone can offer any advice. Doctor just called and I have this and am 10 weeks pregnant.
 
#23 of 26 Old 07-08-2014, 04:41 AM
 
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Anyone tarted it in Australia?

Hi, what a great post. I was diagnosed with d fragilis and blastocyst some few months ago. Doctor prescribed Flagyl but after reading comments on internet I didn't take it. Instead I'm on herbal treatment and Paleo diet. It's been 4 weeks now of the herbal treatment and I don't think it's working but I'm feeling better. My diet is grains free but it's only day 5 so too soon to say anything. Meanwhile my 2.5 year old daughter has been tested with positive result for fragilis only. I'm devastated as I know how hard it is to get rid of it. She doesn't seem to have a lot of symptoms though, just the mashy poos. My doctor prescribed Flagyl for her too, as you can imagine I have no intention of giving it to her after reading your comments. I'm tempted to just leave it and see how she goes. Meanwhile I think it's important to give her loads of iron as a lot of people (including me) with the parasite seem to have low iron blood results. Pumpkin seeds are excellent and are natural anti parasitic agents I've read so we will be introducing it to our diet. I worry though if not treating it for her will interact with her development Not sure, will wait and see. The drugs seem to be very harsh. If I cure it I will certainly let you know. I will add we are also in Australia. Has anyone had any luck with curing it in Australia? K
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#24 of 26 Old 07-08-2014, 05:30 AM
 
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Originally Posted by Shelly C View Post
<p>Interesting reading this. My daughter who is 3 has just had tests confirm she has this. Finding out what the treatment option is tomorrow and we're in Australia.</p>
Hi Shelley, can you comment on your experience with this? What did the doctor say? K
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#25 of 26 Old 07-08-2014, 07:55 AM
 
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Hi, Pip went on antibiotics. I don't specifically remember the name (athough I'm pretty sure it was Flagyl), but she tested clear 1 month post treatment, but still suffered symptoms for up to 2-3 months post treatment. It just took her body a while to get back to normal, even underwent an abdominal ultrasound which showed her body still healing even though the bug was gone. She is now back to normal and did not require further treatment. Hope this helps and your little one is back to normal quickly. It's horrible seeing them suffer. Big hugs!
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#26 of 26 Old 08-12-2014, 01:08 AM
 
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Flagyl how long for successful treatments??

Hi
My 11 year old son has been struggling all year with this and finally got diagnosed. He has been on Flagyl for almost 3 weeks, no success yet. How long where you on the Flagly for??

Based on previous posts I am going to look into Alinia now, and suggest that to Doctor.

We are in Australia. Tried to get a referral to Centre Digestive Disease, but they dont' accept referrals for children under 14years.
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