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Aug 4 15 4:48 AM

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Hi all,

Have had confirmed Dientamoeba Fragilis for over a year now.  Tried Metronidazole first then the 1st & 2nd line with the Centre for Digestive Diseases in Sydney.  I was terribly ill with the toxicity of the 2nd line, i can only assume with the furazolidone which requires a low/no tyramine diet due to the side effects including headaches, dizzyness, flushing, joint pain etc. the other drugs being Nitazoxanide and Secnidazole. 
I know the 3rd line is an infusion but don't live in Sydney and don't want to spend the money that it would cost to bring my whole family over (2 young children) cost of flights,accomm and over $2,000 treatment that i am still skeptical about.  Seeing a private gastro next week for endoscopy/colonoscopy to check for underlying issues but whose team doesn't support the protocols and wouldn't enter into giving the infusion during this procedure (although CDD nurse said they would support the Dr in administering this.
My husband and 1 child has tested positive but are asymptomatic - not asking my other child as she is young and i will assume she also has it.
So... has anyone out there been successfully cured of confirmed DF using the infusion and what are others experiences please?
My husbands GP prescribed Tinidazole as a single dose and he is now my guinea pig trying other regimens where mine has failed.
Everything i have said says treat the whole family but if they haven't worked for me then i am not wanting my children to have any drugs unless either myself or husband have proven they have worked.

Your ideas/experiences much appreciated.
Thanks in advance.

Last Edited By: claire Aug 5 15 12:52 AM. Edited 1 time

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linenup

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#1 [url]

Aug 13 15 2:30 AM

Hi Claire: Troyza had this done (CDD) for DF and did not get the results, I will contact him and see if he can advise you. Personally I think that Metro is a horrible drug, not sure why they did not put you on Tini also I did not think they were using Fura since it had side effects. If I remember right, Diloxanide Furoate was a safer alternative.

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Aug 13 15 11:27 PM

Hi Thanks so mcuh for your reply. I had an endoscopy/colonoscopy today (without the infusion) and have spent another $100 on paromomycin as it is meant to be taken the morning after he procedure so am going with that then calling it a day. I have since spoken to a respected Gastro who told me that fura is banned in the US due to it's toxicity and vets only use it on large animals (I am now 56 kg)!!
I thought i felt rough! I also found out via the Sydney compounding chemist that Iodiquinol is now off the protocols due the it being banned! These protocols do not seem/evidence based but change due to becoming banned. I have found little research on any antibiotics from the CDD. When GP's are accessing and giving out these protocols they are not asking patients for feedback on symptoms or on efficacy of treatment. To me that is unethical on so many levels. I have had 7 different antibiotics so far this year - no wonder my gut is inflammed. Godknows what other potentially long term ill effects i may have from following these 'trusted' protocols.
I am doing my own research now.
Thanks again.

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linenup

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Aug 14 15 1:43 AM

Unfortunately the antibiotic route is a gray area. There is really no solid evidence that rx1 or rx 2 will get rid of parasiteX. It really becomes a system of trial and error. Badbugs.org has a list of drug combinations that people have used. http://badbugs.org/Dfragilis_symptoms.htm (could not get the link for treating DF to work). 

There are some natural routes you might want to consider, the advantage of these is the lesser toxicity, availability and economics. I have seen steady improvement over time with a specific approach. Let me know if you want more information. 

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#4 [url]

Aug 14 15 1:46 AM

Hey Claire, I did the 3rd line infusion with Dr Froomes in Melbourne a few years back. It cleared DF but still have CFS and a myriad of other debilitating symptoms. The abx protocols are hardcore on the body and paromomicyn really rattled me!!!!

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#5 [url]

Aug 14 15 7:43 PM

Hey Troyza - sorry to hear that you still have CFS. Where are you based? I know a therapist (personal friend) who does therapies via skype and he has been working with his own CFS using comp therapies. This is his link if you want to check him out.

https://www.facebook.com/search/str/Daniel%20Hill%20EFT%20NLP%20Coach%20Clinical%20Hypnotherapist%20and%20Enneagram%20Mentor/keywords_top

Sorry it didn't pop up for you.

I has endoscopy/colonoscopy yesterday but without the infusion as no way can i go to Sydney and take all the kids for a week etc. Taking paramomycin so finges crossed it works. Otherwise i am going to keep the parasites and trial specific elimination diets. Been fine all week on low fibre diet (prep for procedure) but had wholemeal toast this morning and got abdo pain which is odd as still gluten in white bread (although no evidence of coeliac disease clinically - could be intolerant of something though.
Thanks or replying. Do you know what was in the infusion and did you have 10 days oral paramomycin afterwards as per protocol?
Thanks,
Claire

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