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1937:
In 1937, Hakansson collected a group of 12 patients with D.fragilis in the stool. For each an adequate history was taken; 6 indicated recurrent gastroeintestinal distress in the form of mild cramps, borborygmus*, mushy stools, or rectal irritation. The Neglected Ameba: Dientamoeba fragilis. Kean et al. Am. J. Dig. Dis. Vol 11. No. 9. 1966)
1966:
In view of cases reported in the literature and cases reviewed, specific therapy seems warranted.
The Neglected Ameba: Dientamoeba fragilis. Kean et al. Am. J. Dig. Dis. Vol 11. No. 9. 1966)
1979:
Observations of symptomatic recovery of patients after treatment of D.fragilis infection would indicate a pathogenic role for this parasite in children. We conclude that symptoms should be treated.
Dientamoebic infections. Spencer et al.
Am. J. Dis. Child. Vol 133. April 1979
2003:
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.
2005:
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
According to the above 2005 study D.fragilis has been accepted as a pathogen by medical professionals. This acknowledgement came about almost a 100 years after D.fragilis was discovered — in 1917.
The majority of people diagnosed before this time were only diagnosed when Great Smokies (now Genova) was established in the early 1980s. Unlike their mainstream counterparts, Genova employed the stool collection and testing methods necessary to diagnose this parasite. Details of this specialised testing, available in published medical literature for more than a decade. Researchers found that D.fragilis was more common than Giardia. This information, which was published in medical literature more than a decade before, was widely ignored by the majority of doctors. Not only was it ignored, but Genova were roundly criticised for including a parasite considered harmless by their peers.
Physicians should perhaps be more 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. It may well be that many cases of abdo. distress of hitherto unknown etiology are, in fact, due to D.fragilis.
A Yang & Scholten,
Am. Journal of Trop. Med. & Hygiene.
Vol 26, No 1 . 1975
Without this type of testing D.fragilis is rarely diagnosed. Genova's approach came under criticism for including on their test report a parasite considered by the majority of health professionals as harmless. Those specialists who had heard of it advised patients not enough evidence existed to to prove D.fragilis' pathogenicity to warrant treatment. Most people were left to cope with symptoms for years, or even decades, trying to cope with an infection which can "severe bowel distress", and caused disruption home, work and school life for years or even decades.
However, despite this growing acceptance, not all doctors agree that D.fragilis is a pathogen:
"I've just had another positive result for D Fragilis and Blasto. from a fixed sample! I've
been very unwell for years, since being diagnosed with IBS 9 years ago. My gastroenterologist does not believe that these bugs are pathogenic." (New Zealand. April 2008).
The impact of living with an untreated bowel infection is reflected in the thousands of emails sent to this site over the past decade. Some examples follow.
"My stomach has always been normal, with normal bowel movements until I was 18. I took a gap year and travelled from Australia to Costa-Rica and my stomach was fine until I got to the Cook Islands. And ever since then i have suffered from stomach upsets ranging from mild to severe. I saw a doctor as soon as I was back and have since handed in numerous stool samples, no parasites were ever found. I have cut out dairy, starch etc all to test if i had an allergy. I was told I probably had IBS (which apparently is very common in women). Last Summer I went back to the doctor complaining that my symptons were not normal and that it must be more than a coincidence that this all started whilst i was abroad in a dirty hostel in the Cook Islands. He sent my stools into a tropical specialist who has just written back to me (6 months later....) to report that I have a presence of Dientamoeba Fragilis - he then adds that it is usually regarded as a non-pathogenic protozoa and that he doesn't suggest I get treated for it." UK student. (Jan 07)
"Some weeks ago I sent the stool samples of my two children and myself to a specialist lab. I'm having some discomfort, feeling very tired and also depressed. Additionally I suffer from stomach ache, bloating and gas and bad taste problems daily (mostly during the night). And my children also....... to my surprise the Smokymountain lab test found out that I have Dientamoeba fragilis and Blastocystis hominis and that my oldest son, who is 11, has Blastocystis hominis too. Now we are testing my husband also.
Our ostheopathic physician wants to treat us with Wormwood, he is of the opinion that these parasites don't belong into our bodies and that we should treat them since they are probably the cause of the discomfort and fatigue. His opinion is completely opposite to the one of my kid's pediatrician who believes that "these things are a kind of yeast and you should not worry about them".
USA, October 2006
"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)
"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)
For six months Mary-Anne had suffered with "headaches, lightheadedness, stomach problems, fatigue". D.fragilis had been diagnosed, uncommonly, in a single, unfixed, stool sample.
Seven days of Flagyl reduced her symptoms for only a few weeks, and her next stool sample was still positive for D.fragilis.
Her GP, who wasn't convinced that the parasite was the problem, decided against any more treatments until a colonoscopy and other tests ruled out inflammatory bowel disease or Crohn's disease.
Meanwhile Mary-Anne began searching for information about D.fragilis on the internet and found Badbugs:
"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."
Mary-Anne presented her doctor with details about specialised stool testing, and a more effective D. fragilis treatment than Flagyl. Her GP prescribed the specialised meds, and Mary-Anne made a full recovery. Her gastroenterologist and general practitioner were so impresssed with the testing and treatment information from this site that they allowed her to submit three fixed samples - instead of the usual one - to make sure the treatment a success.
"...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! 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. Canada)
Not everyone is as lucky as Mary-Anne (above). Instead of being treated, a Dutch man diagnosed with Dientamoeba fragilis after years of chronic health problems, was advised to 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. Holland.
A UK man who moved to the US encountered many obstacles trying to recover from D.fragilis and B.hominis:
"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 about his medical encounters.
After eight years of intense lower left abdominal cramping and burning pain, N. from the USA, was diagnosed with Irritable Bowel Syndrome, despite testing positive to B.hominis — twice. He was prescribed Flagyl In case of undiagnosed Giardia, but the drug failed to relieve his symptoms.
Two years and many doctors later, N. finally stumbled on to a more knowledgeable and open-minded physician who was willing to take Blasto. into account when assessing his patients symptoms. The new doctor did something which should be standard medical practice, but isn't. He arranged for a specialist lab to test three fixed samples to confirm that his patient was still infected with Blasto. The result was positive for Blasto. 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. USA.
"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., from Melbourne, was dismayed that the results of many tests - including a colonosocopy, a CT pelvic scan, a celiac test or a single stool sample failed to explain the reasons for her 11kg (24lb) weight loss, or the "severe burning pain" in her left lower abdomen and immediately below belly button, which worsened after eating.
J. wrote that she often felt so unwell that she often lay on her bed and cried.
She was referred to a urologist, who thought that although her symptoms were "too high for bladder problems" he wanted to look inside her bladder "to make sure". J. declined.
A gynaecologist J was referred to suggested undergoing a laproscopy. J. was not keen because "I knew that whatever was wrong had to do with my digestive tract because when on the SCD diet my symptoms were manageable." (Information about dietary restrictions and symptoms here)
Three years after first becoming unwell J. found the information about specialised testing on the Lab Testing page of this site. Three fixed samples were tested by a specialist lab diagnosed Dientamoeba fragilis.
(March 2005. Melbourne, Australia).
"(My doctor) essentially dismissed my (D.fragilis) diagnosis, not believing that this parasite could not 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)
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. recovered with a specialised treatment. Contact me for details.
2001.
B., from the UK, suffered with diarrhoea and other digestive problems for two years. He was lucky that a single unfixed stool sample tested by an NHS lab revealed Dientamoeba fragilis. A course of tetracycline did not relieve his symptoms.
After reading about that three fixed samples and collecting samples in fixative increases the likelihood of finding parasites, B. phoned the NHS lab to ask why fixative they did not provide fixative. He was advised that fixative is unnecessary, but the lab did agree to provide three sample jars. Three samples were positive for D.fragilis.
A 20 day course of Flagyl (400mg 3 times daily) with doxycycline (50mg 2 times daily) reduced his symptoms temporarily, but his "chronic wind, bad odour, upset intestine feeling" returned after a few weeks.
B. was then prescribed Diloxanide furoate + doxycycline, but his symptoms returned a few weeks later. His dr referred B. to the Hospital for Tropical Diseases in London, where he submitted three fixed samples for parasite testing. All the samples were positive for B.hominis. D.fragilis had disappeared.
A doctor at the clinic informed B. that B.hominis is unlikely to be the cause of his health problems, and that treatment is controversial due to undecided pathogenicity. Nevertheless he is offered more Flagyl for 10 days at a higher dosage of 800 mg 3 times daily.
B's GP is not familiar with this common parasite.
The Tropical Diseases hospital suggest diabetes and thyroid testing, but when the results are normal B. decides his only option is to try the higher dose of Flagyl.
This time he
is well for four months before relapsing.
Another 3 fixed 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)
B. was lucky that his initial diagnosis was made on the basis of a single unfixed sample. Inadequate stool collection and testing methods has greatly contributes to underidagnoses of B.hominis and D.fragilis in the UK. Read more about this problem here.
Alternating negative and positive results can be very frustrating and confusing for both patient and dr. Read about the experiences of others who have encountered this problem here.
When S., who also lives in the UK, became unwell in 1998, her GP advised S. should "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 her symptoms were adequately explained as Irritable Bowel Syndrome (IBS). S. refused to accept this diagnosis. To make him understand how unwell she was feeling S. booked in each week until he agreed to write a referral to a gastroenterologist. The specialist's testing, which included a gastroscope and stomach biopsy, barium enema, blood tests and coeliac disease, were unable to determine why S. was sick, and she was diagnosed with
Irritable Bowel Sydnrome (IBS) and depression.
"When my GP offered to put me on Prozac I changed GPs! I was not depressed - I wanted answers."
As many are forced to do when conventional medicine is unable to provide answers, S. turned to alternative medicine:
"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)."**
After finding BadBugs S. suspected that her problem was a parasite, and presented the information about optimal testing to her naturopath. A specialist lab detected Dientamoeba fragilis in two of the three fixed samples.
The result was dismissed by the gastroenterologist as insignificant. Her GP was unfamiliar with D.fragilis, and sceptical of the research from peer reviewed medical journals included on this site. He did, however, 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". Her dr advised that her symptoms were unrelated to D.fragilis.
Desperate for relief S. found a GP who agreed to treat her infection. Three days of Flagyl failed to relieve her symptoms. Again S. had to pay a naturopath to arrange specialised testing, and was diagnosed with D.fragilis. Her new dr suggested more Flagyl - but this time for ten days instead of five. Her original GP disagreed and advised her stop taking the treatment because he did not believe drugs should be prescribed for a "harmless parasite".
S. choose to ignore his adivice.
After the second round of Flagyl her symptoms disappeared for a few weeks, only to return shortly after finishing the treatment. Another batch of samples tested by a specialist lab revealed D.fragilis had survived.
Her new doctor prescribed Tetracycline for ten days, with the warning that if D.fragilis survived her only options were with two drugs which were 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. "
With great resourcefulness she obtained drugs used in a treatment which cures most D.fragilis infections, and made a complete 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. is "looking forward to a life free of chronic illness caused by her D.fragilis infection".
March 2005
If you would like details fo the treatment which cured S contact me.
C. found a novel way around her doctor's scepticism about the necessity of specialised stool collection and testing methods by enlisting the aid of her vet:
"Dear Jackie, I wrote to you 3 years ago. You put me in touch with D. here 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")."
A few months later C. later retested with the same lab. "To my horror I find that I now have Dientamoeba fragilis as well as Entamoeba coli."
Read about the problems of intermittent shedding here.
Feb 2005. UK.
S., also from the UK, contacted me in July 2004 - two years after testing with a specialised lab revealed the presence of D.fragilis and B. hominis.
His doctor was reluctant to treat what he considered "harmless organisms", but prescribed a course of tetracycline followed by Flagyl. When the drugs failed to relieve his symptoms (see failure rates for Flagyl on the treatments page.), and the results of a colonsocopy, endoscopy, a test for H.pylori (the ulcer causing bacteria), Crohns, ECT and chest x-rays were all negative, the GP diagnosed IBS:
"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 woman and her 11 year old son, both diagnosed with D.fragilis, were advised that the parasite does not cause symptoms:
"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 felt that she was "going around in circles" trying to find someone to treat her D.fragilis and B.hominis infection diagnosed by the London School of Tropical Medicine and Hygiene:
"I saw the top man, Professor X, at the Tropical Medicine Clinic in London & he told me that the parasites are not causing our symptoms. The Royal London, where I see a gastroenterologist, advised me to take the advice of (the clinic), so a vicious circle!"
(April 2005. UK)
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. The family doctor refused treatment on the basis that D.fragilis does not cause cause symptoms. She was told 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 forwarded Michele the details of a combined drug treatment prescribed by a GI clinic experienced in treating this parasite. Michele's GP, despite his sceptisim, agreed to prescribe the drugs. 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 recovery:
"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."
Despite her recovery Michele's gastroenterologist still insisted that : "D.fragilis could not make me sick".
Her children also made a full recovery with the same treatment.
(USA. 2005)
Click here to read how a Sydney businessman 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 wrote for advice because Flagyl had failed to cure her severe long-standing symptoms, and her doctors had given up trying to cure her.
Desperate for help she sought the advice of a specialist, and received this 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 because her chronic diarrhoea, fatigue and shortness of breath had increased after taking Flagyl. Her GP did not believe that her positive result for D.fragilis result was connected to her symptoms. Flagyl was prescribed, as it often is, in case of undiagnosed Giardia.
One year later she recontacted to tell me that she was still searching for a doctor to help her overcome her infection, and that despite another round of Flagyl she was still testing positive.
"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, diagnosed with D.fragilis, wrote:
"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."
S. asked her family doctor why she believed her positive result for D.fragilis had no bearing on her chronic health problems:
"'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's "severe gas pains,constipation and weight loss". For three years she had tried unsuccessfully to find a doctor who would consider the possibility that D.fragilis was responsible for her daughter's symptoms:
"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.
(2002. USA)
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. To diagnose her daughter's diarrrhoea, loss of appetite and "severe stomach pains" the family physician arranged for her mother to submit one unfixed stool sample. When the sample was negative 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 stool testing, 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.
Back in London "a tropical disease hospital near Kings Cross in London" tested a single stool, which was negative for parasites, and based on this result was advised that the problem was "a bad case of travelers' diarrhoea and that the symptoms would decline with time."
After arriving back in Australia a medical friend prescribed a course of Flagyl as a precaution, but the treatment 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 performed a sigmoidoscopy, endoscopy, colonoscopy, small bowel biopsy and blood tests, but no stool tests. 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 probably as a result of 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".
This 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 in 1975 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 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. as many patients are. "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. could not find a dr in Perth (Western Australia) to 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
**This is not quite the case unfortunately. The problem of finding help for a D.fragilis and B.hominis infection is global. It is not confined to the UK or Australia alone.
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., from the USA, 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. (USA. 2001)
"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!"
USA. 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. (USA. 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
A decade after after becoming unwell Dientamoeba fragilis and Blastocystis hominis were diagnosed by a specialist lab. A number of unfixed samples tested over the 10 years were negative:
"Have been ill for 10 years after returning from two months in Indonesia. Parasites were suspected and never found."
Sept. 2000 USA.
A. from Italy was diagnosed with D.fragilis. He was tested because he had complained of "weakness or chronic fatigue, nausea, weight loss, inflamed colon".
"The doctor have told me that my problem are psychological, and that i have an irritable colon".
Italy.
2000
"Could you offer any help? My doctor says my symptoms are IBS and that I can live with this parasite."
(USA 1999. Diagnosed with D.fragilis)
A Canadian woman, diagnosed with D.fragilis & B. hominis, contacted in 2002 because she was concerned that her local water may be contaminated with parasites because a number of people in her small town had similar digestive complaints to her own. Her local doctor, because he was unfamiliar with the parasites, was unable to offer treatment advice.
A teenager on the island also suffered digestive symptoms, including extreme nauseau & stomach pain after eating, and had lost weight. Her symptoms did not improve after Flagyl prescribed in case of undiagnosed Giardia. She was not tested for parasites, and because of her lack of response to Flagyl, she was diagnosed with anorexia.
"The 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 wold not admit her."
March 2002. Canada.
B. contacted this site in 1999. He had been sick 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 - USA. Nov. 25. 1999.
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."
The result was positive for 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 01 200. USA.
A doctor's reliance on a single stool sample to diagnose her symptoms 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."
Months of Yodoxin (Iodoquinol) and one treatment of Humatin 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. USA.
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. " (USA. 2001)
"My doctor isn't at all convinced about D. fragilis after some persuasion he let me have Metronidazole". (USA. 2001)
"... 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 " (USA. 2001)
A female kindergarten teacher with chronic digestive 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 by her doctors that D.fragilis does not cause symptoms. (USA. 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 some weeks after finishing the meds. Repeat stool tests were now negative for D.fragilis but positive for B. hominis. (USA. 2003)
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. Stool testing was arranged, and she tested positive D.fragilis. 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. (USA. 2002)
The following 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" (Spain. 1999)
A Sydney resident returned from his wedding in Bangkok with chronic health problems. Over a period of seven years he underwent a full spectrum of medical tests - including standard stool testing - without result. He was diagnosed with stress and prescribed tranquillisers.
Seven years later specialised stool testing revealed 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 his return to Sydney he consulted many of the same gastroenterologists I consulted. The result was the same - specialist gastroenterologists advised that D.fragilis is harmless, and does not cause symptoms.
D.fragilis medical literature shows that Yodoxin (Iodoquinol) is the drug of choice to treat D.fragilis, and this is what I provided this man. Unable to find help in Sydney he flew to the UK for help. A UK medical dr he consulted responded to his request for treatment 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." (USA. 2002)
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 an obstetrics and gynecology specialist for answers 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 and 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".
(USA. 2000)
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." (Canada. 2002)
A young US girl was diagnosed with three parasites: Giardia, E.histolytica and D.fragilis. After various drug treatments, mainly Flagyl and tetracycline, 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. USA.
After the treatment her child's symptoms disappeared and stool 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. USA.
"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. USA.
"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. USA.
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