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"D. fragilis has emerged from obscurity recently because it is now recognized as a common cause of chronic diarrhoea and is treatable with drugs."
Dientamoebiasis: clinical importance and recent advances. Stark DJ et al. Trends Parasitol. 2005 Dec 24
Dientamoeba fragilis — a protozoal infection which may cause
severe bowel distress. Norberg A, Nord CE, Evengard B.
Clin Microbiol Infect. 2003 Jan;9(1):65-8.
Until very recently standard medical advice was that D.fragilis does not cause symptoms. This advice was starkly contrasted by decades of published D.fragilis medical studies, largely refuted or ignored by most health professionals.
Also largely unheed was the literature's advice that doctors should question their local lab's ability to detect this parasite, and to be aware that specialised drug treatments were often necessary. For decades Flagyl remained the drug of choice, and often still is, despite its high failure rate against both D.fragilis and Blasto. hominis.
Finding a doctor who thought D.fragilis was a pathogen could be extremely difficult, and often impossible. Many people told me that despite years of "doctor-shopping", they had been unable to find a doctor who would take their infection seriously. Such was the medical mindset. They had been left to cope with the effects of a bowel parasite described in medical literature as able to cause "severe bowel distress" (Norberg et al.) Most had been misdiagnosed with Irritable Bowel Syndrome and depression.
The emotional and physical impact of living with an untreated D.fragilis infection is self- evident from the correspondence on this site, but on a positive note the odds of D.fragilis now being dismissed as irrelevant is less likely than at any other time.
The recognition of D.fragilis' status as a significant pathogen is reflected in the significant drop since 2005 in requests for D.fragilis advice. Thankfully emails such as the following are much less common:
"The infectious disease doc that diagnosed Df was not even going to treat me. She almost diagnosed me as delusional for even asking." (USA. 2004)
or this:
"(My doctor) essentially dismissed my ( ) diagnosis, not believing that DF could be responsible for my symptoms. I mentioned the many other experiences posted on your website and her response was: "They can put anything up on the web. I wouldn't believe what they say. How come I haven't read about this in the medical literature?" (USA. 2003)
The situation for those infected can only improve now that D.fragilis has taken its rightful place as a pathogen alongside Giardia lamblia and Cryptosporidium. Real progress will be made when all doctors become familiar with this common parasite, fully accept its pathogenicity, and are educated about the need for specialised testing and treatments..
In that respect there is still quite a way to go.
"Over the past ten years I have accumulated a list of ailments as long as
your arm.
These include:
Extreme fatigue
Bloating
Stomach pain
Extreme dizziness
Constipation
Anxiety
Depression
Severe psoriasis
Mental Cloudiness
Large food and chemical sensitivities
Weight loss
Major carbohydrate and sugar cravings
I know only too well the feeling of despair and frustration associated with
bouncing from health professional to health professional with little
success.
Your story was chilling at times with the similarities.
I recently took a parasitic stool test (conducted by ARL), which came back
positive for both Dientamoeba Fragilis and Blastocystis Hominis."
(August 2006. Sydney)
D.fragilis is rarely identified without the aid of fixative, but Mary-Anne, from Canada, was lucky. Her D.fragilis infection was diagnosed in one unfixed stool sample. Read the lab testing page about the importance of collecting a minimum of three samples.
Unwell for six months, she described her symptoms as typical of a D.fragilis infection: "headaches, lightheadedness, stomach problems, fatigue."
Following a week of Flagyl her symptoms improved, but returned few weeks later. Post treatment testing - again one unfixed sample - revealed that D.fragilis had survived the treatment. Her dr decided against any further drug treatment until the results of a colonoscopy and other tests had ruled out inflammatory bowel disease or Crohn's disease.
Mary-Anne was willing to go through with the testing, but strongly suspected - after finding this site - that the parasite was causing her health problems:
"After reading your website I am positive that the root of my problem is the parasite so I have an an appt this Thursday. I plan on showing (my doctor) your documentation in hopes that I can get the right prescription to get rid of them so I can get back to feeling 100%. It seems to be very frustrating to get proper treatment of this problem as I see others have mentioned on your website."
I sent Mary-Anne details of the recommended testing methods, as well as information about a treatment with a higher success rate against D.fragilis than Flagyl.
Her doctor agreed to treat her with the specialised treatment, and Mary-Anne recovered. Both the gastroenterologist and general practitioner were so impresssed with her recovery and the information about testing, they allowed her to submit three fixed samples, instead of the usual one to make sure the treatment had worked.
" ...I am so happy to report that the 3 follow up stool samples I submitted all came back negative for any parasites...obviously the treatment worked worked! The gastro doctor says she doesn't need to see me again now that I'm feeling better...she was very impressed and will be keeping the info you provided to help others! Again, thank you so much for all of your information..I don't know what I would've done or where I would've been without it. You obviously know more than a lot of doctors out there and have taken a lot of time and effort to share your knowledge and understanding by creating your wonderful website. I am sure that there are many people out there that are grateful to you for helping regain their health and quality of life back (including me). My wish for you is that all of the caring and support that you have provided to others comes back to you tenfold!" (July 2005)
A Dutch man was diagnosed with Dientamoeba fragilis after years of chronic health problems. Despite the positive result his doctor refused to treat him, and instead suggested he consult a hypnotherapist:
Dear Jackie, It has been a few months since i last wrote you. In the meanwhile I have had all kind of investigations in the hospital. The Dientamoeba fragilis is still there and according to the dokter my symptoms (tired, IBS, red eyes in the evening etc.) cannot be from the abovementioned. He thinks (if he is able to do that ) that I have pushed myself over the limit and now I am a chronic tired patient....I DONT BUY IT. He (a medical docter) send me to a hypnotherapist , to learn to mark my borders so that I dont get so tired.......(I get so tired from docters). I feel like a fool, because I can't get anyone who does take my symptoms seriously. I am at the end of my possibilities .
June 2005
T., a UK man now living in the US, sought medical help for his D.fragilis and B.hominis infection:
"It completely baffles me why the entire concept of parasitology seems to be ignored, bypassed and circumvented by the very people who are supposed to be there to provide the answers. It doesn't make any sense why this should be so...read his medical encounters here
In 1993 N. began to suffer intense cramping and burning pain in his lower left abdomen and B.hominis was diagnosed from a single unfixed sample.
Although his doctor refused to consider the possibilty that Blasto. hominis was causing his symptoms, Flagyl was prescribed in of undetected Giardia. When this treatment failed to relieve the symptoms, N. was diagnosed as suffering from IBS.
Twelve months later another stool sample confirmed B.hominis had survived this drug.
The symptoms continued unabated for ten years. Finally N. located a physician familar with the need for specialised stool collection and testing methods. Three fixed samples revealed an ongoing Blasto. infection, as well as D.fragilis.
"I got the 'IBS' line a lot because I have suffered anxiety and panic attacks for some 22 years now. I never bought the diagnosis. Intuitively, it didn't seem right. My symptoms progressed to bloating, gas, constipation, dizziness, fuzzy headedness, and lethargy. My tolerance to alcohol went from good to non existent, sweets of any kind.. a big NO NO. I have pondered everything from Thyroid and or Adrenal fatigue to Candida and allergies most tests have shown nothing out of the ordinary...except parasites of course"
I can't tell you the impact this has had on my life...whatever it is. I know the parasites are a problem...they're as good a place to start as anywhere. Maybe parasites will be the answer. Your site has been one of those rare islands of hope in a sea of misinformation and dead ends."
March 2005.
"My son is 7. He was diagnosed with Blastocystis hominis, Dientameoba fragilis and Endolimax nana when he had diarrhea as a baby. We did not treat him because we were told that these were non pathogenic...although the diarrhea cleared on its own he has suffered digestive problems for years, as has my daughter and myself."
25 Feb 2005, USA
J. was dismayed that neither a colonosocopy, a CT pelvic scan, a single stool sample nor a celiac test had explained her 11kg (24lb) weight loss and the "severe burning pain in my left lower abdomen and sometimes immediately below belly button" which worsened after eating. J. described feeling so bad she would often "lie on the bed and cry.".
J. was referred to a urologist, but the specialist thought the pain was "too high for bladder problems", but suggested he look inside her bladder "to make sure". J declined his offer.
Because a colonoscopy and CT scan of the pelvis was negative J. was referred to a gynaecologist, who suggested a laproscopy. J. was not keen because she "knew whatever was wrong had to do with my digestive tract because when on the SCD diet my symptoms were manageable." (Find out why diet can help reduce the symptoms of a parasitic infection here Diet)
When J. came across the information about testing for D.fragilis on this site, she arranged her own testing through a specialised lab. Three years after first becoming unwell she found a possible explanation for her symptoms - Dientamoeba fragilis.
Melbourne, Australia, March 2005
W. from the USA wrote:
I've had DF for at least 5 years and probably longer. Vague health/GI problems that I could never quite put my finger on - but I knew something was wrong. Not poorly enough to attract any serious attention from medical industry.
Over last 3 years as my own suspicions ebbed and flowed I would try a course of metronidazole or iodoquinol every now and then. (2 of each did not get rid of DF) . Then I would think I was on the wrong track and try to understand these health symptoms from some other angle ... Those symptoms: general malaise, fatigue, insomnia, distended abdomen, depression, an apparent malabsorption syndrome: during each course of iodoquinol those same symptoms would abate - and come right back after discontinuation. Physicians finally interested now - prescribed a course of both the above drugs at the same time.
This whole thing has been incredibly frustrating as the med. world was not interested in DF. I still don't know that DF is the problem but I am interested in the similarities between my symptoms and those of giardia infection as well as that of entamoeba hystolytica. I wonder if DF won't soon be found to be a pathogen from which many people are seen to suffer. (Giardia was considered non-pathogenic not long ago). ....."
W. made a complete recovery after taking Iodoquinol in combination with Flagyl.
2001.
B., who had suffered two years of diarrhoea and other digestive symptoms, was asked to submit a single unfixed sampel to a a UK Department of Health laboratory. The result was positive for Dientamoeba fragilis.
A course of tetracycline prescribed by his local GP made little difference to B's symptoms.
Because he was still unwell he was asked to submit three stool samples for post treatment testing. Aware that liquid fixative plays an important role in diagnosing parasites B. and asked the lab why his jars did not contain this important ingredient. He was told that fixative was not necessary.
The three samples were negative.
B. had read on this site that purging increases the detection of parasites. When he was booked in for a colonoscopy he took advantage of the requirement to take a a special laxative to prepare his bowel for the 'scope to submit a purged sample to test for parasites.
The single purged, unfixed sample, tested by the same government laboratory, was positive for D.fragilis.
A combined metronidazole (20 days, 400mg 3 times a daily) and Doxycycline (50mg 2 times daily) treatment reduced his symptoms, but his "chronic wind, bad odour, upset intestine feeling" returned after a few weeks.
He was prescribed another two drugs: a combination of Diloxanide furoate + doxycycline, but within a few weeks after finishing treatment he was again unwell.
B. was referred to the
the Hospital for Tropical Diseases for retesting. Three fixed samples were positive for B.hominis, but negative for D.fragilis.
The doctor from the Tropical Diseases Hospital advises B. that Blasto. is unlikely to be causing his health problems, and that treatment is controversial due to undecided pathogenicity. Nevertheless B is offered another round of Flagyl, this time for up to 10 days at the higher dosage of 800 mg 3 times daily.
B's GP is informed of the new test result, but is unfamilar with the parasite.
Before B. decides on another treatment he undergoes diabetes and thyroid testing. The results are normal, and B decides he has little option but to try another round of Flagyl.
This time he
is well for four months before relapsing.
The School of Tropical Medicine arrange for another 3 fixed samples to be tested by the London School of Tropical Hygiene & Medicine. His samples are now negative for Blasto. but positive for D. fragilis.
B. is advised by a professor at the Hospital that he is "fully healthy" and to go and enjoy his life because "Df is not harmful in any way".
(April 2005)
Read similar cases highlighting the problems intermittent shedding here.
Inadequate stool collection and testing methods, including lack of fixative, has greatly contributed to the underdiagnoses of B.hominis and D.fragilis in the UK. Read more here.
When S. from the UK became ill in 1998 her GP advised her to "learn to live with the symptoms" of feeling "constantly sick, pains in large intestine, chronic fatigue, constant diarrhoea accompanied by green and explosive stools".
Her GP firmly believed that S. had a case of Irritable Bowel Syndrome (IBS), but S. - who had found this site - questioned the medical diagnosis and wanted to be tested for a parasitic infection.
To gain his attention she booked in to see her doctor weekly, and after a few months her doctor agreed to refer her to a gastroenterologist. A gastroscope and stomach biopsy found no evidence of coeliac disease, nor did a barium enema and blood tests. Her dr believed stool testing was unnecessary.
S. was diagnosed with depression, as well as IBS.
"When my GP offered to put me on Prozac I changed GPs! I was not depressed - I wanted answers."
She hoped alternative medicine would provide answers:
"I gave up on traditional medicine and went the alternative way in desperation as the combination of constant diahorrea, chronic fatigue and continual viruses increasing in severity was very frightening. Progressive Homeopathy maintained me but couldnt cure me. My homeopath went to a lecture by a private doctor and homeopath and thought he could help me. He thought I had candida and was surprised when the results came back that my gut had not been perforated (leaky gut syndrome)."
Convinced that the problem was due to some type of parasitic infection, S. arranged testing with a specialist lab via a naturopath. Dientamoeba fragilis was found in 3 fixed samples.
The gastroenterologist dismissed the result as insignificant. Her dr was unfamiliar with the parasite, and sceptical of research S. had printed out from this site. However he did agree to discuss the results of the stool test with colleagues.
"Two weeks later, with no word from him, I asked him to ring his colleagues for the treatment information he lacked". Shortly afterwards he advised S. that her symptoms were not due to D.fragilis.
Desperate for relief S. consulted another GP, who prescribed three days of Flagyl. Again S. organised her own testing by booking in with a naturopath, adn the results were still positive for D.fragilis. Her new dr suggested another round of Flagyl - but this time for 10 days instead of 5. When S. advised her original GP that she was taking the treatment he advised her to stop, because he did not believe drugs should be prescribed for a harmless parasite.
S. ignored her the dr's adivice and continued on with the treatment. Her symptoms disappeared for a few weeks before returning again in full force. Another round of testing with the same specialist lab revealed D.fragilis had survived.
S. was then prescribed ten days of tetracyclene, with the advice from her second dr that that if D.fragilis survived the only options were with two drugs not available in the UK. "My GP declined to tell me what they were. Any information about what other doctors said was always through him as nobody else would speak to me being a mere patient! I was desperate as I had lost my job and was about to lose my marriage through the illness and could not afford to wait for experimental treatment. "
S. obtained details of a treatment shown in literature as effective against Df from this site. With great resourcefulness she managed to obtain the drugs and made a full recovery.
"My stools are returning to normal, I no longer feel constantly nauseous, tired, feverish and achey, my mind is clear and I can think again and my energy has returned".
Another 3 fixed samples tested by the specialist lab were negative.
S. wrote that she is "looking forward to a life free of chronic illness caused by her D.fragilis infection".
March 2005
Contact me for details of the treatment which finally cured S.
C. found a novel way around her doctor's scepticism of the need for specialised testing to diagnose parasites - she enlisted the aid of her vet:
"Dear Jackie, I wrote to you 3 years ago. You put me in touch with D. in the UK who gave me very helpful information about the a private UK lab who tests for D.fragilis. I contacted the lab immediately but they were not allowed to send the results to me, only to a doctor and as I didn't have a sympathetic one, I put the file to one side.
Then I saw that someone on (a website) had gained a lot of useful information about parasites from their Vet. Of course! Vets are better trained on parasites than doctors. I got the results sent to my vet. This was six months ago and entamoeba coli was detected ("non pathogenic")."
C. later retested with the same lab, and this time the result was somewhat different: "To my horror I find that I now have Dientamoeba fragilis as well as Entamoeba coli."
Feb 2005. UK.
S., also from the UK, contacted me in July 2004 two years after being diagnosed with both D.fragilis and B. hominis by a specialist lab.
Despite his doctors reluctance to treat what he considered "harmless organisms" S. was prescribed tetracycline followed by Flagyl. There was no change in his symptoms (see failure rates for Flagyl on treatments page.). The results of a colonsocopy, endoscopy, a tet for H.pylori (the ulcer causing bacteria), Crohns, ECT and chest x-rays were all negative.
S. wrote:
"My GP is telling me I have IBS and have to live with it. His last recommendation was low doses of anti depressants to counter the IBS. I declined his offer. "
27 July 2004 UK
A mother and her 11 year old son, both diagnosed with D.fragilis, were advised by drs that D.fragilis was not a problem:
"My 11 year old son and I have suffered for nearly 3 years with many gastrointestinal problems. Our story is similar to those on your site, both symptoms and doctor's reactions. My son had his appendix removed and suffered for months with diarrhea. He was diagnosed with IBS and reflux. He is nauseated much of the time and only attends school sporadically. He is currently on Nexium. I was just diagnosed with gastroparesis (delayed empyting of the stomach). My question is what can we do? My son's gastro doc discounted articles from your site and the CDC's ( US Centre for Disease Control) site; and my gastro doc had never heard of d. fragilis."
(USA, 2004)
A UK woman was going around in circles trying to find help for her D.fragilis and B.hominis infection:
"I saw the top man, Professor X, at the (clinic) & he told me that (Df and Blasto) are not causing my symptoms). The Royal London, where I see a gastroenterologist, advised me to take the advice of (the clinic), so a vicious circle!"
(April 2005)
A 22 year old Irish law student struggled to cope with his untreated D.fragilis infection. Despite losing a quarter of his body weight his GP advised him that the parasites were not causing his symptoms:
"Every single aspect of life is a struggle at the moment for me. I cannot plan anything and even if I have a night out with my friends I find it hard to eat the next day even though I have only been drinking water on the night out. The nausea comes all the way from my stomach to my mouth, it is so overwhelming at times that it is painful to be conscious." (Ireland , July 2005)
Michele contacted me in early May 2003 about her long term health problems. Both she and two of her four children had recently been diagnosed with Dientamoeba fragilis. One child was a "special needs" child. Because the family GP did not believe D.fragilis causes symptoms, treatment was refused. suggested that her special needs child would recover "with just enough love".
Michele visited several specialists before finding one familiar with D.fragilis. His advice was disappointing:
"As your website cautioned, I was told that the D.frag. would not cause the symptoms that I was describing, like weakness and fatigue along with the GI stuff. I was asked if I was familiar with irritable bowel . I said "yes" and was asked why I didn't think this is what I had. I answered "Because I have lab work stating that I have D.frag and the CDC literature states this can make you sick ." She said, " Well, maybe something else is making you sick " . I said "Maybe, but this seems to be a good place to start.".
"They then ran one additional sample--not the usual three. I am not worried yet though as I have 2 more appointments scheduled with different infectious specialists. After reading your site I figured this might happen and so I made several appointments hoping someone would help me. So I will wait for the results and continue trying to get help."
I sent Michele the details of a combined drug treatment prescribed by a GI clinic experienced in treating this parasite. Michele's GP agreed to prescribe the drugs & both Michele and her children made a full recovery:
"My energy level is back to normal. I am not taking naps in the middle of the day for the first time in years. I am able to resume my exercise program and I am experiencing no bouts of dizziness and none of the headaches that were commonplace for years. My stomach is still a little off, but I do not feel like I ate a bag of rocks, and I do not pass gas like a sailor. My son, who also tested positive and who suffered for years with stomach distress, is feeling great. For the past 2 years he could eat no dairy, now after treatment he can eat anything.".
Understandably upset at being made to suffer unnecessarily, Michele phoned an infectious disease specialist who had misdiagnosed her with IBS and left her with little hope of overcoming her health problems:
"The infectious disease doc that I went in one of our top hospitals told me that I had an irritable bowel. I explained to the secretary that I was feeling remarkably better after medication and that I was misdiagnosed by her boss. When she asked if I wanted him to call me back, I said that it is my practice to only give someone one opportunity to treat me like I am an idiot. To his credit, he called back and apologized and asked that I forward the information (on D.fragilis) that I brought with me to the visit, that he dismiseed, to him."
Michele also returned for to the gastroenterologist for a follow-up appointment after being treated. Despite her recovery the gastroenterologist insisted: "D.fragilis could not make me sick".
Her children recovered after eventually being treated with the same drugs prescribed to Michelle and recovered.
Click here to read how a Sydney business man recovered as a result of contacting this site six years after first becoming infected with D.fragilis.
In July 2001 a UK woman diagnosed with D. fragilis contacted me. Because Flagyl had failed to cure her severe long-standing symptoms her doctors gave up trying to treat her.
Desperate for help she sought advice from a specialist. This was the reply:
"I really don't think a parasite specialist is what you should be looking for. In a chronic medical disorder, it s a voyage of discovery reaching to a satisfactory solution to the problem. Usually control of symptoms is the objective rather than cure. It almost never is identifying the single totally solvable answer in chronic illness."
(2001)
M., from the US, first contacted in 2003 after her chronic diarrhoea, fatigue and shortness of breath worsened after being prescribed Flagyl. She was positive for D.fragilis, but her GP did not believe this parasite was causing her symptoms. She had been prescribed Flagyl in case of undiagnosed Giardia.
One year later she recontacted to tell me that she was still searching for a doctor who would address her D.fragilis infection, and that she was still positive for D.fragilis, despite another round of Flagyl:
"I just had another positive test result and am trying to find a doctor to treat it. I think I visited at least 15 doctors for this illness over the past year.
I went to two infectious disease specialists today. One of them didn't know this parasite at all and didn't believe it could cause symptoms. The second infectious disease doctor didn't know about the parasite either**. Two other gastroenterologists told me I needed a psychiatrist because I was obsessed with parasites--yeah, really, that is why I tested positive again a year after my first diagnosis.
You have been a lifesaver in my year and a half battle with this beast! Thanks ever so much."
July 2004. USA
** Published med. literature shows that D.fragilis does not have a cyst form.
S, from Canada was also diagnosed with D. fragilis:
"How can an 'intelligent' doctor not consider Dientamoeba could NOT cause serious health problems'???".
Her infectious disease specialist and gastroenterologist refused to acknowledge the D.fragilis literature:
"Firstly, I was told point blank that none of my symptoms are caused from my positive test for D.f. including the large white membrane that was excreted on several occasions, which is what took me to my doc in the first place; then I submitted a stool sample and it was positive for df."
"My gastroenterologist bluntly said that he and I were not going to agree (that D.fragilis is pathogenic) and it was at this point that I was considered getting up and just simply leaving! However, I quickly decided that would not be in my best interests - I knew that I wanted to have a colonoscopy done to have a look and see if he can see anything going on in there. Oh, this is interesting; he then eventually came around to say only in 'rare' cases is df a pathogen and he's never seen it in all his 25 years! In the end he also said that when there is df, there is often other parasites- such as Giardia Lambia (I forget the other one) that may simply not have showed up on the day of testing when the df did. When I told him that at times the diarrhea was green he said that something was sure in there. He also blasted me at the beginning when I mentioned the D.f. infection. Why are these docs so defensive about df??? He said to me that he had Infectious Diseases specialist's letter in front of him saying that the infectious disease specialist was reluctant to treat my df and that you don't need to treat df. So he asked why was I coming to him!!! I told him that I wasn't told this by the other specialist."
When S. was first diagnosed with D.f. she asked her family doctor why she did not believe the parasite was connected to her symptoms:
"'Oh,' said I, 'why?' Her response - 'because it's just a little parasite". (July 03)
H. from the USA contacted in August 2002 about her daughter who was suffering from "severe gas pains,constipation and weight loss". For three years she had tried unsuccessfully to find a doctor who would consider this parasite was causing her daughter's symptoms. She wrote:
"The medical doctors did tests and dismissed her saying there was nothing wrong with her. This girl was down to 98 lbs. and nothing was wrong! Come on! We finally found a chiropractor who immediately took a stool sample and discovered parasites. Our daughter has been diagnosed with them 3 times since then (all in 3 years). One of the problems through this whole thing is that she cannot as a chiropractor prescribe drugs, so we have to go to our medical doctor. He does not recognize parasites as a USA problem; therefore, he has stopped prescribing meds.What should we do?
H. recontacted in October 2002:
"My daughter is once again struggling with (the symptoms of) D.fragillis. I don't know where to go to get the treatment she needs because all the medical doctors I have tried don't recognize it as a problem. The chiropractor had tried working with our medical doctor, but he refuses and she has given up as to what to try next. Please help.
H. the mother of a 7 year old girl, considers herself lucky she didn't have to wait too long before her daughter was diagnosed with Dientamoeba fragilis. Suffering with typical D.fragilis symptoms of diarrrhoea, loss of appetite and "severe stomach pains" the family physician ordered a test on a single, unfixed, stool sample. The sample was negative and the child was diagnosed with Irritable Bowel Syndrome.
D.fragilis was later identified in a stool sample ordered by a paediatrician:
"(My doctor) began talking about IBS and was she under any stress, etc. I wasn't buying it. He referred her to a paediatrician who also ordered a stool sample to be tested. This time they found D. fragilis. I knew there was something wrong with my daughter and I wasn't about to accept a diagnosis of IBS. I guess I was lucky that I didn't have to wait too long to get the real diagnosis made". August 2002
A woman suffered gastroparesis (delayed stomach emptying) after returning from Mexico. She suspected she parasites may be the problem, but her "family doctor scoffed at me for suspecting parasites and wouldn't order the tests". To overcome this obstacle she enlisted the help of a family friend - a psychiatrist - to requisition the stool test, and asked that the results be sent to another doctor friend - a tropical diseases specialist. The specialist doctor expressed doubts that a parasite was the problem, and advised that "Mexico was not exotic enough to constitute a real risk. It wasn't like "deepest, darkest Africa".
Three stool samples were positive Dientamoeba fragilis. She was treated and recovered.
(2002)
An Australian from Perth in Western Australia believes he became infected with D.fragilis after travelling to India & Nepal with a friend in 1992:
"Whilst in Varanasi India, we spent a day doing our own thing after having a dispute in the morning. That afternoon my friend produced from his pocket a peace offering consisting of a couple of moist Indian sweets wrapped in banana leaves of the type that were being offered by street vendors all over town. We ate the treats although we should have known better and went out looking for an evening meal. Within hours we were both feeling ill, suffering from nausea and stomach cramps. My friend went to the bathroom and forced himself to vomit and woke the next morning feeling fine. I went to bed without vomiting and awoke the next morning to severe stomach cramps and acute diarrhoea. For me the symptoms got worse and worse and I suffered weight lost, cramping, stomach pain and diarrhoea for the remainder of my travels.
On arrival in London "a tropical disease hospital near Kings Cross in London" tested a single stool, which was negative for parasites. He was advised that he was " probably suffering from a bad case of travelers' diarrhoea and that the symptoms would decline with time."
When he arrived back in Australia a medical friend prescribed a one-week course of Flagyl as a precaution. The Flagyl had "no noticeable effect". A year of severe dietary restrictions stabilised his symptoms down to: "bloating, gas, cramping, chronic diarrhoea and/or mushy stools with occasional mucous on stools (no further weight loss - in fact my body weight had returned to normal) "
A gastroenterologist in Brisbane investigated with sigmoidoscopy, endoscopy, colonoscopy, small bowel biopsy and blood tests, but did not order any stool sampling. The colonoscopy revealed "some enlargement of lymph nodes on my colon that were indicative of a "prior infection".
No parasites were detected (by the colonosocopy) and the specialist diagnosed IBS suspected to be due to a prior infection. A short course of flagyl was prescribed "as a precaution on the grounds that the lab was only able to detect 50% of the most common parasites and so it was possible that parasites could go undetected". The treatment was ineffective.
"In 1995 I moved to Amsterdam to live with my girlfriend. After her seeing me suffer for almost 2 years with what had become 'normal' life for me, she sent me to the AMC Hospital (Amsterdam Medical College) where I had a colonoscopy, blood tests and gave a series of stool samples. The report from the stool sample read "veel dientamoeaba fragilis gezien which translates literally to saw heaps of Df". He asked the doctor why D.fragilis was not detected before. The gastro informed him that "the past few years had seen huge improvements in the medical profession's ability to detect and identify parasites".
The advice is grossly innacurate. The specific types of testing necessary to detect D.fragilis has been available for decades. A study published in the Journal of Tropical Med. & Hygiene warned physicians "to be concerned about the competence of the labs. to which they submit samples and be better informed of techniques used routinely by the laboratory before accepting positive or negative reports at face value". The study concluded "It may well be that many cases of abdo. distress of hitherto unknown etiology are, in fact, due to D.fragilis." (1975. Yang & Scholten)
Despite the positive result for Dientamoeba fragilis. the specialist diagnosed an irritable bowel, (IBS) as a probable consequence of nerve damage to the bowel due to a prior parasitic infection.
The gastroenterologist advised that evidence of "non-pathogenic" D.fragilis in the stools was a strong indication that S. had been exposed to another pathogen in the past, and this would explain his symptoms.
"He went on to say that he would treat the Df if I demanded him to do so, but that the treatment was dangerous in terms of side effects and should not be undertaken given that there was no evidence to suggest that Df was a pathogen at all."
Unable to find medical care he was forced to do his own research. "I scanned the web for references and discovered that the American literature treats the parasite more seriously that do the gastros that I have come into contact with. Since then I have continued to live with the same old symptoms that have come to represent normality to me, but with nagging suspicions over the validity of my diagnosis......thus leading me to do another Internet search whilst on holiday, which eventually led me to (the badbugs) site."
S. was unable to find a doctor in Perth (Western Australia) who would treat his infection. In July 02 he recontacted:
"I approached a gastro here in Perth (an old uni friend of mine) who had never heard of DF. Actually he's not really interested in it. Upon my request for help he prescribed Metrodiazonale (sp?) because he did not know how to get Iodiquinol. I took it and for a while the symptoms subsided - but they quicky returned and I knew it had done no good. He went on to suggest air swallowing and sugar intolerance - but my perspective has been until I have excluded the parasite, why should I pursue other investigations?. As I have said many times, I was well one day, sick the next. To me that points to an infection, and seeing as though I know I have one, why waste time looking for another problem? "
4 July 02
M. wrote from Hawaii:
"I am suffering with Dientamoeba Fragilis. It has got me down and no one here in Hawaii seems to know how to deal with this matter. I have also been told that Flagyl will do the job. (July 02)
In November 2001 M. contacted me about her recent D.fragilis diagnosis:
"I have just found your website and would like to add my story.
I had been complaining about my stomach for about a year , visiting my regular doctor and a gastro specialist. My doctor was at a loss for what it could be, and suggested possible IBS . The gastro guy said I had a very spastic colon and to go for an upper and lower GI series. That sounded too radical, so I instead went to a naturopath. She took me off wheat, which had dramatic results (good ones) - and for a while I was convinced that was the problem. But symptoms still remained - fatigue, stomach rumbling, feeling unwell, very soft stools, etc..... I was diagnosed with D.fragilis this past September (2001)."
In July 02 M. said that her fear of drug side effects prevented her taking medications. She has been able to keep her symptoms somewhat under control by following dietary restrictions.
"After 7 years of IBS diagnosis , 7 GI specialists, numerous MD's, D.Fragilis was found at GSDL. My symptoms have accumulated to add up to what otherwise has been called Gulf-War Syndrome."
D.B., USA, June 01
"Many years ago (maybe 16) I was diagnosed with Irritable bowel after complaining about abdominal pain. since then I've sort of ignored the problems. A year ago I was diagnosed with MANY food sensitivities". Specialised stool testing revaled a D.fragilis infection.
"After years of misery re - loose stools etc, diagnosed as irritable bowel I have been diagnosed with a moderate amount of D fragilis by Great Smokies Diagnostic laboratory."
D.B., UK, 1 Feb 01
"I found your web site and read your story. Thank you for your web-site.
I have been chronically ill with an unknown cause for many years. I have been told that it is IBS, stress, fibromyalgia. Recently, fibromyalgia was ruled out. I then went to a naturopathic physician, hoping to find some help. She did a stool collection through Great Smokies Lab and Dientamoeba Fragilis was found. I went through 2 months using an herbal formula that she thought would take care of it. When the stool collection was repeated, I found that I still have it. She now has me on a stronger herbal formula. I was thinking that maybe she was so focused on this parasite that she wasn't looking for the "real" problem until I found your web-site. Thank
you for all the information that you have there!
D., 6 March 01
Came upon your web sight today . My 9 year old daughter has been sick 1 1/2 months. It started with a "stomach bug" she never got sick or had diarrhea at that time . Since she has been fatigued, pale, and various other problems (i.e. sore throat, headaches joint pain). Having had 4 rounds of blood work done, a cat scan of her sinuses, allergy tests (and finally a stool test ) the infectious disease doctor told me, before getting all stool samples back, "Your daughter is not sick, she needs to see a psychologist! ". Knowing my daughter, this is not psychological.
Today I got a call from the same doctor that said that she DOES have a parasite, Dientamoeba Fragilis .
Her daughter was treated with Humatin and is now symptom free. April 01
For 16 years a 40 year old woman suffered with severe abdo pains. In 2001 she was hospitalised with severe abdo. pains, fever and a high white blood count:
"After 3 days they couldn't find what was wrong. A stool sample eventually identified DF. My regular doctor doesn't think DF could cause my symptoms for which I was hospitalized."
USA, 2001
"Have been ill for 10 years after returning from two months in Indonesia. Parasites were suspected and never found."
Received Sept. 2000 USA. Ten years after first onset of symptoms specialised testing revealed Dientamoeba fragilis and Blastocystis hominis
A. from Italy was diagnosed with D.fragilis. He complained of "weakness or chronic fatigue, nausea, weigh loss, inflamed colon".
"The doctor have told me that my problem are psychological, and that i have an irritable colon". 2000
"Could you offer any help? My doctor says it is IBS and that I can live with this parasite."
(USA 1999)
A Canadian woman, diagnosed with both D.fragilis & B. hominis contacted me in 2002. She was concerned the local water may be contaminated due to a number of people in her small town who were unwell with similar digestive complaints to her own. The local doctor was unfamiliar with either parasite, and could not offer treatment advice.
One of the island's residents, a teenager, also suffered digestive symptoms, including extreme nauseau & stomach pain after eating. She had also lost weight. Her symptoms did not improve after a course of Flagyl which was prescribed in case of undiagnosed Giardia. She was never tested for parasites, and because of her lack of response to Flagyl, she was diagnosed with anorexia.
"Th dr accused the mother of being a smother mother and that the child had anorexia and needed psychiatric help."
The child was taken to hospital who:
"sent her home saying that she would die if she did not eat and no they won't admit her."
March 2002
B. contacted this site in 1999 after suffering symptoms since 1991:
" I went to the first specialist in 1992 and he didn't bother to test for parasites and told me that the good news was that I didn't have cancer or Crohn's disease and that I would just have to learn to live with the symptoms of IBS which were largely stress related!"
"After weeks of feeling awful, losing 22 pounds, stomach cramps, and lots of medical tests (upper GI, Abdominal CT scan, all kinds of blood work) I finally asked my Dr. on the advice of an alternative medicine doctor, to test me for a parasite. His exact words were, "I've been testing Ova & Parasite for 15 years and have never seen anything in the USA."
When my results came in the nurse called to say I had an "amoeba". I retrieved a copy of my test and discovered that it was D.Fragilis.
My wife now has been having some of the same symptoms. I asked the Nurse about it being contagious and her reply was "only if someone is playing with your fecal matter."
Mikey - Nov. 25 2001
After returning from a two month trip to Indonesia C. suffered 10 years with chronic health problems:
"Thanks to the info you posted on your site my doctor has allowed me to get my stool testing done at the local hospital wich apparantly has a much better testing facility. He's also let me assist in determining how to do the testing (ie. several seperate screenings over the period of a week.) As opposed to the single screenings done in the past. This is great news for me cause I was looking at spending $600 to have it done through Great Smokies. I still wasn't able to get to get much info on culture or staining but I figured I'd better not push it."
Tests were positive for both Blastocystis hominis and Dientamoeba fragilis.
FL from the US contacted in 2000:
I have had numerous hospital procedures to be told that there appears an inflamed area of my bowel, but nothing could be detected. Instead I was diagnosed with a stress disorder and given tranquillisers for two years. During this time I had chronic fatigue, headaches, sore throats, chronic bowel pain and wind...yet the doctors prescribe me with more stress related chemicals.
Stool testing revealed infection with
Dientamoeba fragilis & Endolimax nana. Feb 01.
A doctor's reliance on a single stool sample to test for parasitic infection may have resulted in an unnecessary operation for this woman:
"In 1990 I contracted Dientamoeba fragilis from my two year old who had frequent pinworm infections. I had all the usual symptoms and told the doctor that I thought I had a parasite. He tested one stool which was negative and proceeded to convince me that my symptoms were caused by a faulty gall bladder even though all the gall bladder tests were negative.
Unfortunately I agreed to the removal of my gall bladder which exacerbated the symptoms so severely that I thought I was going to die. After surgery I had diarrhea 12 times a day, had to eat every two hours and suffered with severe migrating arthralgia. I lost a total of 25 pounds, my hair was falling out and had severe insomnia. Not until my husband contracted the disease did the doctor conclude that we might have an infectious disease.
The parasite was finally found in my husbands stool, but I was being treated with flagyl. I had to call the CDC to find get information on treatment and at that time even they were not convinced that D.fragilis was pathogenic
When I got sick there was nothing printed about the disease and I even went to Shands teaching hospital and they had never heard of it. It was very disheartening!
I took Iodiquinol for four months and gained back 40 pounds. I still had diarrhea 6 times a day. I was also treated with Parmomycin but none of the medications cleared up the infection. Over the years I continued to improve and I suppose that my own immune system was keeping the infection at bay. I only seemed to have mild occasional symptoms that didn't compromise my lifestyle.
I'd like to try taking the Iodiquinol and doxycycline together, but I can't bear to go back to the unbelieving doctors and go through all those tests again.
I'd love to knock this thing out once and for all. My husband still has mild symptoms also, but fortunately he did not have his gall bladder removed."
A further three months Yodoxin (Iodoquinol) and one of Humatin has significantly reduced this woman's symptoms. (Dec 01, USA)
Child diagnosed with D.fragilis:
"My daughter was having severe gas pains, constipation, and weight loss. The medical doctors did tests and dismissed her saying there was nothing wrong with her. This girl was down to 98 lbs. and nothing was wrong! Come on! We finally found a chiropractor who immediately took a stool sample and discovered parasites. One of the problems through this whole thing is that our cannot chiropractor prescribe drugs, so we have to go to our medical doctor. He does not recognize parasites as a USA problem; therefore, he has stopped prescribing meds"
2002
Received from mother seeking help for child's D.fragilis infection:
"Jackie, do you live in Sydney Australia? Or where do you reside. The reason I ask, I am thinking it is mighty depressing that I must leave the country (USA) to receive proper medical care." (2003)
"This is just to say thanks for your site. I have been suffering with an unresolved gastro complaint for 10 years subsequent to a trip to India. Three years ago dientamoeba fragilis was detected in my stools by a tropical hospital in Amsterdam. The doctor would not treat it as he regarded it as non-pathogenic . I'm still suffering and your site has given me the info I need to get it sorted out. "
"My doctor isn't at all convinced about D. fragilis after some persuasion he let me have Metronidazole".
"... the doctor denies any treatment and says that D.fragilis will work itself out of the system and to drink lots of liquids !" (2002)
The following was received from a woman hospitalised for three days because of severe stomach pains, fever, and elevated white blood count. On the third day stool testing revealed D.fragilis. He doctor was not convinced the result was significant: " My regular doctor doesn't think DF could cause my symptoms for which I was hospitalized "
A female kindergarten teacher suffered ongoing symptoms for eight years tested positive several times for D.fragilis and pinworm. Some of the stool tests had also detected B. hominis. She was advised that D.fragilis does not cause symptoms. (2001)
A woman diagnosed with D.fragilis provided her medical history:
"Two weeks after a week-long river trip I developed g.i. symptoms; bloating, belching, and loose stools. I contacted many doctors about this problem and received different ideas. Here is what they said:
GP - Try these antibiotics for giardia - No improvement
GP - check gall bladder function w/test at hospital - Gall bladder was fine
GP - must be swallowing air
GI specialist - need to do upper GI exam (I didn't want this done then)
Health clinic - must be swallowing air , and/or hiatal hernia
New GP - try antibiotics for giardia - No improvement - GP - try Flagyl
Naturopatic doctor - dietary suppliments, iodoquin. (20 day treatment)
No improvement* Suggested seeing specialist in food allergies
Specialist in food allergies - tests show sensitivity to wheat, dairy products, peanut butter, tomatoes, avocados, citris, etc. Suggested avoiding these for 6 weeks then gradually reintroduce. I tried the suggested dietary changes - No improvement
New GP - referal to specialist GI specialist - need upper GI exam
Test showed inflamation of stomach and upper intestine and hiatal hernia
Gave me Carafate to help heal stomach lining. No improvement
Suggested living with symptoms since other more powerful drugs would be dangerous and have serious negitive side-effects"
Symptoms improved after treatment with Iod. + doxycyline but reappeared after finishing meds. Repeat stool tests were negative for D.fragilis but positive for B. hominis.
A Carribean cruise left a woman "violently ill " suffering "vomiting, diarrhoea, gas, bloating, and intestinal cramping ."
Because she continued to feel sick for months she consulted her doctor every week since returning from holidays. Her stool was tested and she was positive for D.fragilis, but the result was dismissed.
She suffered with chronic fatigue and felt "so poorly that I have not been able to maintain my exercise program. Exercise should raise my energy level but I am left exhausted ......I have been really frustrated trying to get my doctor to take this situation seriously. Before the positive result he asked if I was depressed...I take that to mean, he was starting to think my medical problem is all in my head".
Her physician advised that her symptoms were due to "something she ate" (which is accurate because D.fragilis is contracted via fecal/oral contamination).
Another year passed before she was retested and was diagnosed with E.nana and prescribed a course of Flagyl which alleviated the symptoms for six weeks later she became ill again.
Her doctors decided her symptoms were due to feeling "nervous about vomiting". Further tests revealed D.fragilis.
A Spanish woman was diagnosed with D.fragilis after treatment with Flagyl:
"I live in south of Spain and about 2 years ago I started to get bloating, vomiting all the time and diarrhea and fever. I was told every time it was something I ate. I was getting better for 3 weeks then sick again and every time worse (than the time before) - couldn't walk - just barely from the bed to the bathroom. They put me on a strict diet - bananas & lemon water etc.. I lost a lot of weight and every time I try to eat something else got sick, finally this year one doctor decided to check me for a parasite - they found that I had the parasite E.nana and give me Flagyl 4x a days 250mg. After 2 weeks I felt alive again - we check again the blood and stools and the parasite was gone. Six weeks later I started to vomit again with little diarrhea then it got worse and i knew that thing was back and i got worse than before but then the other doctor told me i was getting nervous from vomiting and that was all when the test came back i had again nana and another parasite d.fraglis, so I have been on Flagyl again ......this has now being going on almost 2 years" (1999)
A Sydney resident suffered chronic health problems since a visit to Bangkok seven years ago, but . an array of medical tests, including a single unfixed stool sample, failed to reveal the cause. He was not tested for parasites using specialised stool collection and testing methods, and was diagnosed with stress and prescribed tranquillisers.
Seven years later specific stool testing revealed infection with D.fragilis.
"I have been suffering for 7 years. I returned from my wedding in UK via Bangkok and have had 7 years of hell since getting food poisoning there. My wife has stuck beside me despite being the worst person in the world to live with, losing 28 kilos, nearly all my hair, going grey, collapsing and being hospitalised on numerous occasions for complete fatigue and exhaustion and bowel disorders. I have had numerous hospital procedures to be told that there appears an inflamed area of my bowel, but nothing could be detected. Instead I was diagnosed with a stress disorder and given tranquillisers for two years. During this time I had chronic fatigue, headaches, sore throats, chronic bowel pain and wind."
Despite the positive tests he has had trouble finding a specialist gastroenterologist who would take his positive test seriously enough to treat:
"The traditional medical fraternity have continued to dismiss me and my results even from these tests. It is a very lonely battle".
On returning to live in Sydney he consulted many of the same gastroenterologists as the author of this site, with the same result - he was advised that D.fragilis was unrelated to his symptoms.
After reading the medical literature on this site which recommends diiodoxyquin (Yodoxin, Iodoquinol) to treat D.fragilis, he decided to pursue treatment with this drug on a visit to the UK. His request to a doctor to prescribe this drug elicited the following response by email:
Dear X
Having used all my resources, I am unable to find an appropriate treatment for this condition. Many pathologists in the Uk do not believe that dientameoba fragilis is pathogenic ie is not capable of causing your symptoms. I apologise for my failure in trying to help you and your illness.
Kindest Regards Dr X
(1999)
A woman infected with Df, concerned about passing the infection to her children, received this response from her GP: "this is harmless, wash your hands.".
(2000, USA)
Another woman, also with chronic symptoms, returned to her gp very upset after consultation with a gastroenterologist:
"I saw my gp this evening because I was so upset, she's going to look around for someone more experienced and more competent. This idiot wasn't interested at all and had no knowledge of df."
This person described herself as looking "pale with terrible indigestion" as well as abdominal bloating, flatulence and "the feeling that I was full or that something was living in me, and very loose stools with blood it them". His doctors diagnosed his symptoms as stress-related: "they tried to put me on anti depressants last week for my tremors saying it was stress"
Not convinced that stress was to blame he pursued stool testing after finding this site:
"I then went back and made them test my stool again. I submitted 3 samples 24 hours apart. My dr phoned me and said I had D. fragilis but there was nothing they could do for it and I should learn to live with it ."
(1998)
After suffering symptoms for almost five years this woman, recently diagnosed with D.fragilis, wrote in Nov. 2001:
"I'm relieved to find this DF I have recently been diagnosed with is a reality and I share many symptoms with so many others -- I am not going crazy. I always had tons of energy which has slowly been fizzing out of me the last few years along with my weight and my appetite".
After the positive test for D.fragilis she was treated with Yodoxin (Iodoquinol) made her feel:
"lightheaded, dizzy, queasy - but I was hoping it would get my life back on track."
Two stool samples taken several months apart were negative:
"I was supposed to be all better -- but I still felt tired and had the usual cramping when going to the bathroom. Most toilet visits over the past few years have been gruelling, exhausting, hemorrhoid-ripping experiences that leave me feeling nauseated, chilly and weak."
A sigmoidoscopy and colonoscopy were both clear.
Still suffering symptoms she visited a obgyn (Obstetrics and Gynecology) specialist for an explanation for her continuing sypmtoms:
"I was willing to listen the explanation that my body was just producing too much progesterone which triggers smooth muscle contraction - and so much was being produced that the colon was contracting at a crazy rate "
She was re tested and D.fragilis was again detected.
An untreated D.fragilis can have a huge impact on familiies:
A desperate plea for help was received from the mother of two children, all diagnosed with D.fragilis after several years of chronic symptoms misdiagnosed as IBS.
When Flagyl failed to relieve her symptoms she wrote that she had all but given up hope of trying to recover her families' health. Her husband had cited her ongoing health problems as a significant contributing factor in the breakdown of their marriage. She is now divorced, and wrote that she has "no self esteem left" and is "too tired and depressed to fight with Doctors again about this chronic, unsolved problem the children and I are having".
The woman's family physician "had not seen a case of DF before and couldn't offer me much information" (2001)
The following was received from a parent of a D.fragilis infected child with symptoms:
"..My doctor does not seem very knowledgeable nor concerned."
(2002. USA)
A woman living in a remote area of Canada was diagnosed after many years of sickness with D.fragilis. She described her symptoms as "almost crippling".
After finding this site she suspected that an infection may be the cause. She eventually managed to convince a doctor to treat her "but it took 16 doctor visits before I was given anything". The new doctor prescribed metronidazole (Flagyl) "based on his previous experience in treating giardia".
Stool testing after the Flagyl treatment was still positive for D.fragilis. She took her local GP published studies on D.fragilis, but it was not appreciated
"As far as my doc. is concerned, I doubt that he even has a computer and the last time I brought him an article to read he scoffed at it and got his back up. Unfortunately there are limited physicians where we live - there is an extreme shortage, and we are stuck with him for lack of a better alternative." (2002)
A young US girl was diagnosed with three parasites: Giardia, E.histolytica and D.fragilis. After various drug treatments had failed to relieve her symptoms she was referred to a psychiatrist:
"Today I had a meeting with my psychiatrist which did not go very well. i started telling him about how sick i've been with the throwing up and diarrhea and cramps and everything and while telling him this I started to cry.
He said he was very concerned about my depression and said he wanted to put me in a psychiatric hospital as he did not believe that i was actually physically ill and started in on the same spiel about how stress can cause my physical symptoms. And then said he didn't understand why i would be so willing to take anti parasite medications and yet be so resistant to anti depressants...when i reminded him that i had taken them in the past and they hadn't worked. He said he didn't think i gave them a good enough shot.
When I reminded him that the parasitologist had isolated three parasites in me (the giardia, DF, and Entamoeba histo.) he said 'lots of people have parasites and manage to function, work, and socialize'. Truly spoken like a person who probably never felt the symptoms of a parasite! I told him i absolutely refused a psychiatric hospital admission but if he wanted to admit me to a hospital to find out why i keep throwing up and having diarrhea that was different.
Now he wants to have a session with my parents so he can convince them my illness is all in my head!"
(1999 USA)
"I live in England, and my husband and I have been found to have DF, but no other parasites. We both have rather dodgey digestive systems, but my husband has got a specific problem that I'm wondering if can be caused by the DF. We get the impression that doctors here aren't keen on prescribing, and even the 'alternative' doctor that we saw, who gives acupuncture and nutrition advice, said that DF was unlikely to cause any symptoms, and didn't need treating. Any advice about what we can do in England to clear it?"
17 April 2005
Cured of D.fragils after specialised treatment:
"I know how hard it was for me to find out any information on dientamoeba, so I'm more than willing to share what I know.
My (now 11) year old daughter starting losing weight about a year ago. She was having re-occuring episodes of cramping and loose bowel motions and complaining of nausea. She is 5 feet tall 1 1/2 inches tall, and dropped to 76 pounds by Christmas time last year.
I put her on a higher fat, higher calorie diet, and although her weight stabilized at 80 pounds, she couldn't gain, no matter how much she ate. The abdominal symptoms also caused discomfort and distress frequently. Despite several doctor's visits , it took until this summer to convince our family doctor to test for parasites. It came back positive for diantamoeba.
My daughter has been on medication for 10 days now (10 to go), and has gained four pounds, with almost no cramps experienced in the last five days or so. We are very happy with the results so far. She had been referred to a pediatrician several months ago, and we saw him this week.
While the doctors all seem to feel that it would be unusual for diantamoeba to cause this severe a reaction , the pediatrician said that it is usually found in association with Girardia (I think that is how it is spelled), which can cause more problems. He thinks when the initial test for parasites was done, they may have stopped looking when they found the diantamoeba, and so not detected Girardia if it was present (He said Girardia is harder to find.) If her symptoms persist despite the current treatment, he will re-test her for Girardia.
Do your symptoms sound at all similar to what my daughter experienced? I'd be interested in knowing, as they all shake their heads and say diantamoeba doesn't usually cause this much problem"
1998
After the treatment her child's symptoms resolved and samples were negative.
Two years ago I contracted giardia and was really ill. I lost 45 pounds and vomited many times through the day. I also had loose stools, and lower back pain. I had these symptoms for 5 months before I was treated with flagyl and the symptoms went away. My wife then had giardia last year and lost 15 pounds and had explosive diareah ( not sure how to spell it). Now 2 weeks before Christmas this year I was vomiting throughout the day several times. I was pale and had terrible indigestion.
Just after Christmas I suffered from abdominal bloating, flatulence, the feeling that I was full or that something was living in me, and very loose stools with blood it them .
I finally went to the Dr and they tested me and said I had giardia and put me on flagy again for 7 days. I ended up getting tremors and high Blood pressure yet no release of symptoms. I have now lost 15 pounds and I have a lot of blood in my stools and mucous, tons of it and terrible abdominal pain and I am sleeping half the day away. I went back to the Drs saying that I was still sick and they put me on antidepressants telling me it was stress. My wife insisted not to take the medication of course.
I then went back and made them test my stool again. I submitted 3 samples 24 hours apart. My dr phoned me and said I had Df but there was nothing they could do for it and I should learn to live with it. I then went to another Dr who said she could put me on meds. She put me on diiodohydroxyquin 3 times a day for 20 days. I just started taking it yesterday. In the mean time I feel really tired. I got up today at 7 and went back to bed at 9 until 1.15.. got up for an hour then went back to bed for several more hours. My stools are very loose and just hmmmmm sort of bits of stool. What ever I eat goest through me in 20 mins approximately. I am to the point where I don't want to eat as the pain is so bad in the abdomen that it isn't worth the pain.
1999
"For a year I went through fluctuating mystery symptoms. Although there were some intestinal problems, my symptoms were primarily heart palpitations, numbness in the extremities, shortness of breath, even dizziness and difficulty concentrating. Many times, these symptoms would come on suddenly at 2am,waking me out of a sound sleep.
My regular doctor told me I had a salt deficiency and recommended I drink boullion! He never took my symptoms seriously, mainly chalking them up to stress . Needless to say, I "fired" him. Out of concern that I would not be able to go on a hiking vacation with my father in July, I went to a cardiologist, who found nothing wrong with my heart, but fortunately she is also a specialist in internal medicine. Also luckily, she had had a patient just a few months prior with almost identical symptoms. He is a 55 year old man who almost experienced a fainting spell while walking in Europe on vacation with his wife. That poor man went through cardiology tests, neurological exams, an MRI, etc., etc. until his wife mentioned to my doctor that he was having stomach problems, too. At that point he had the 3 stool tests done and the Dientamoeba showed up. This led my doctor to test me as well, and sure enough, there were the amoebas!
She prescribed Iodoquinol for me, but I must have a sensitivity to Iodine of which I was not aware previously, because only 2 days of the treatment caused me chills, disorientation, nausea, and extreme weakness . I am currently building back my strength so that I can start on tetracycline.
Prior to this year, I was a runner and had completed the 1998 New York City Marathon. But since these symptoms appeared and have grown worse, I have become woefully inactive, although I try to get out and walk as much as my stamina permits.
This is such an insidious and nasty thing. Which is why it is such a blessing to have had access to your forum of information and other people's experiences.
Thanks again for a great job in building and maintaining this website."
2004
"Thanks so much for writing back to me. You're right...after reading the e-mails posted on your website, I do feel lucky to have been diagnosed so early. Fortunately, my doctor understood the importance of doing the three-fold stool test in preservatives. It was amazing to me to read your experience and that of others where the doctors have refused to test thoroughly or even recognize how crucial it is in detecting the DF.
Actually, here's another interesting story. I had throat irritation after taking the Iodoquionol so went to an eye-ear-throat doctor to have that checked out. I told her what medication I had been taking and why and she essentially dismissed my other doctor's diagnosis, not believing that DF could be responsible for my symptoms. I mentioned the many other experiences posted on your website and her response was, "They can put anything up on the web. I wouldn't believe what they say. How come I haven't read about this in the medical literature?" The real kicker was when she said, "I'd hate to think I've been sending people away who had dizziness when they actually had parasites." I guess it was easier for her to dismiss the concept of DF than admit that she had been ignorant of a real problem!!! These doctors are so arrogant!!
It is sad how the invasion of the DF makes you feel older than you are. I will be 42 at the end of May, but during the bad bouts, I have had to rely on my 75-year old Mom for help!
Please do post my e-mail on your website. I know it helped me to read the experiences of the others facing DF (though their struggles often moved me to tears), so the more information that's out there, the better.
Let's hope the tetracycline does the trick for me - I'll let you know how it goes.....
E. USA (2003)
"After years of misery re - loose stools etc, I have been diagnosed with a
moderate amount of D fragilis by Great Smokies Diagnostic laboratory .
I have found your web site fascinating and also a huge relief.
My doctor isn't at all convinced about D. fragilis after some persuasion he let me have Metronidazole, but I only lasted 4 days before side effects set
in and was told to stop taking it.
D.W.
1998
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