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Following are excerpts from a small selection of emails received
since the Blastocystis hominis section was added in early 2000: "He told me that we are no longer going to be treating this condition as Blasto but rather he wanted to look other causes since he thought that Blasto. could not have lasted through this treatment and could not give me symptoms for so long. He has spoken to the Infectious/Tropical Disease department here in Calgary as well as with the Travel Medical Clinic and they agree with his decision They all feel that I must have IBS or Colitis since this has been going for four months now. I am very upset about this but I do not know what else to do. They want me to go for a colonoscopy in the next couple weeks to see what is going on inside of me as well they want me to do for even more blood, urine & stool tests. I have given up with the Canadian medical system" " I mentioned to ( the travel health dr ) about testing for Blasto. and D.fragilis. He said the test is done in the ova & parasite here their labs. He also said Blasto. is the most common parasite - it shows up all the time in hundreds of patients - BUT HE NEVER TREATS IT. I showed him some of your case histories (printed out your entire web site)...he said the reason it is possible ( some people recover with drugs ) is timing, they may have gotten better on their own. He believes something else is causing the health problems the usually eventually resolves it self." (received from mother of 11 year old son with undiagnosed chronic digestive symptoms. He has not been tested for either Blastocystis hominis or Dientamoeba fragilis). received April 2005. "I saw the top man, Professor Chiodini, at the London School of Tropical Hygiene and Medicine & he told me (Df and Blasto. are not causing my symptoms). The Royal London, where I see a gastroenterologist, advised me to take the advice of TDH in their treatment, so a viscious circle!" UK woman diagnosed with D.fragilis and Blasto. April 2005 P., a self-employed family man, lives in the UK. Since 2002 he has suffered from diarrhoea, feeling unwell, and cycling symptoms of "excrutiating abdominal pain, watery diahrea, acidic hick-ups and unable to move or do any thing. I was sweating at night and felt as if I had been beaten up. My stomach was disdended and seemed to be full of hard lumps. I lost a stone overnight! I have had joint and muscle pain especially in my hips and thighs also a pain in the front of my head." The result of a single stool sample was negative. Apart from a hiatus hernia, tests including colonoscopy, sigmoidoscopy & a barium meal x-ray were also negative. Although P's digestive symptoms began before a trip to Spain, during his holiday he became worse and had to be hospitalised. Tests in Spain were unable to identify the cause. After returning
to the UK, and after finding this site, P. insisted his doctor allow
him to send in three stool samples for more accurate detection of
parasites. He was diagnosed with amoebic dysentry (infection with
the parasite Entamoeba
histolytica), as well as Blastocystis hominis. "I have just been referred to 'The London School of Tropical Medicine' by my doctor as he says he has never come across Blasto. I
have had my cosultation and was told by the professor that Blasto
in his opinion in non pathogenic - and he is testing me for diabetis
and thyroid problems - he did say however that he will treat my
Blasto. with Flagyl. if these both prove negative. Just to see what happens"
Despite treatment
with Flagyl a number of times, P's symptoms remain unchanged. Tests
results after finishing Flagyl were negative for E.histolytica,
but still positive for Blasto. "Two years ago I have started to suffer from diarrhoea, bloating, pain, fatigue and depression, but no weight loss. I was searching the web for possible causes for these kind of symptoms and reached your website.
Iodoquinol;
metronidazole; Bactrim; tinidazole. Herbal treatments - including
oregano oil, black walnut, and others, were also tried. The treatments
either temporarily reduced D's symptoms or not at all. " My symptoms are: severe abdominal pain, bloating, distension, diarrhea, weight loss of 5 kg's, fatigue, irritability, inability to concentrate, insomnia. Blasto has shown up on the stool tests. A G.I specialist did a round of tests to R/O other diseases such as Chron's and Cealiac ( blood tests, upper barium series, colonoscopy...) and finally diagnosed Irritable Bowel Syndrome since he doesn't believe Blasto is pathogenic . " 11 January 2005, Canada " I still cannot believe that I had this for the last 5 years & no other specialist picked it up." For five years Cheryl suffered from diarrhoea, vomiting and nausea. Misdiagnosed with IBS and stress, she was treated unsuccessfully with Flagyl. Finally diagnosed with Blastocystis hominis by a private laboratory she made a complete recovery after specific therapy advised by this site. "I live on the Central Coast of New South Wales Australia.
I have been sick with diahorrea, vomitting, nauses off & on for
the last 5 years. I have had all the tests, scans etc done checking
out the stomach & bowel. One specialist said it was stress the
other said IBS. In February I went to see a doctor/homeopath.
He did stool tests* which cost me a fortune, which Medicare
do not cover. The test revealed that I do not digest my food & that I had Blastocycstis Hominis. The doc put me onto Flagyl
for a week, which gave me severe headaches, but I persevered. He
also have me Lactobac ( a very strong lactobacillus & bifidobacterium)
& Bepep (Betaine hdryochloride) to digest the food. After 3 weeks,
I got very sick again with all the same symptoms. I don't want to
go back to this doctor, as I found out that he charged me double
for all my consultations & the Lactobac & Bepep. He also has a very
bad attitude." " My
whole family came down with diarhea on April 2, 2002 after my son
entered a local University day care. Everyone else in my family
got better, but me. Anders from Denmark had a similar experience. He was advised by his dr there is no cure for Blastocystis hominis infection. " I have been tested for parasites several times, but it was yesterday that they came up with the diagnoses: Blastocystis hominis. The doctor told me that there was no treatment. I searched the net for a while and found your webpage. So I am looking forward to call her and tell her she is wrong. " Anders M, Denmark 7 May 02 Anders fully recovered with specific drug therapy recommended by this site: "Dear Jackie! Things are fine here! I have completely recovered. After 3 days of treatment I allready felt much better! I finished the treatment after ten days. I have a little problem with air in my stomach but it seems that this declining as well. So thanks again!" AM, 19 June 2002 A follow up email in 2003 found Anders still symptom free. (for treatment options go here) Many people report that their doctors find it difficult to believe Blasto. causes symptoms. It's also common for doctors to look for other causes for their patient's symptoms, as the following person reported: "After a short trip to Hong Kong in June 2002, I returned with the typical symptoms that are related to the Blasto. bug (tiredness, bloating, gas, loss of appetitie etc...). I consulted my GP and a stool test was carried out and was diagnosed with having Blastocystis Hominus. After several courses of Flagyl, Fasigyn and Doxycline 100, I'm beggining to become quite frustrated with this bug, that refuses to go away. Altough my doctor believes that it is quite rare for Blasto. to have an effect on people, I am sure that this is what is causing my discomfort. I have read the feedback from the site and can relate myself to alot of those cases. I
am very eager to resolve this problem, as I am heading on an overseas
holiday very shortly. After a strong determination to have this
resolved beforehand, I feel I am back at square one (My GP now believes
it is osephegitis reflux. A colonoscopy test, and a course of Nexium
was taken to no avail). "I live in Sweden, but since I could not get any help or buy the medicines there, I had to leave for another country where the doctors were more willing to follow your advice. I have simply emigrated, and I have been living abroad for several months. The Swedish doctors believes that blastocystis hominis is a "normal flora"." J.L - 29 June 03 (update August 2003: J. finally found doctors in her new home in Poland who agreed to treat her infection. She fully recovered after specific therapy advised by this site. The same doctors are now interested Blasto. and the necessity for specific drug therapy). I have tested positive for blastocytis hominis and am very sick at the moment. My Dr. says it is not likely to be from this parasite because it is non pathogenic. I have just returned from Cuba where I experienced extreme diahrea and have been getting sicker by the day (returned Feb 16). I am wondering if the problem could be the blasto." MS. 19 March 03 "My daughter was recently diagnosed with D.fragilis and B.hominis, possibly contracted during a weeklong stay in the east Romanian countryside. Her only symptom was fatigue (we originally thought she had mononucleosis, but the high eosinifil count sent us looking for a parasite). She has finished a 20-day course of iodoquinol, and is feeling somewhat better, but lab results show that there is still B.hominis present. Her doctor says that B.hominis is not usually treated, and the CDC web site indicates that they are unsure that it is pathogenic." MW 19 March 03 "the specialist, while confirming presence of Blasto in stools, advises Blasto is present in everyone and is not cause. Is not treating Blasto" R. 17 March 03 The UK mother of a four year old boy wrote that her son tested positive for large numbers of Blasto . in his stool on a trip to Spain, after suffering " on and off with tummy pain, bowel problems and weight-loss". The Spanish doctor suggested her son should be treated on the family's return to the UK. A single stool sample tested by a UK lab returned negative, despite her son's intermittent " recurring diarrhoea and tummy pain". In July 2002 he was taken to a hospital "as a result of a hugely swollen tummy, diarrhoea, vomiting and pain. They said it was a virus . He is still bad and they have now taken a stool sample. What do I do? It is like hitting a brick wall. I just want to help my son (and husband) get better. The single stool test has again returned negative and the doctor said " he did not have blasto ". Her husband has suffered IBS symptoms for several years. J. 13 June 02 "Thank you so much for your interesting site. At least we know we are not on our own - this is important. I have suffered with irritable bowel for at least 8 years and have in the past been diagnosed with Blastocystis hominis, giardia, but not d fragilis.However, I have the same symptoms as some of your writers have: depression, spastic colon or irritable bowel, itchy anus, cronic fatigue, general lethargy and no or little energy. C. 3 July 02 Piria, from
Sydney, Australia, returned from Mexico in 1999 suffering symptoms
of a bowel infection (described below). Single, unfixed stool samples
were negative for infection. She was diagnosed with IBS by general
practitioners. The following email was received from a woman was diagnosed with slightly higher than normal levels of yeast and high levels of B.hominis. "My alternative therapist wasn't very happy when I asked if B.hominis was more of a problem than the the yeast...she said Blasto. is so common that it's not worth worrying about" emailed by L, June 01 "I must tell you how much hope your website and others I found gave me. After suffering so long and being told by Dr.'s that B. Hominis is there but does not cause my symptoms . Now I know the cause and can work on the solution. Thank you very much. L. 30 May 02 M. tested positive for Blasto. at least 6 times in recent years. She described her symptoms as "bloating/flatulence/irritable bowel/nausea/now a back ache from the bloated feeling.". Two treatments of high dose Flagyl failed to relieve her symptoms or rid her of the Blasto. Her doctors do not consider B.h. is connected to her symptoms and she : "ended up getting told by a G.I how he thought I had a depression/anxiety disorder and I should take Prothiaden. His exact words were "Bh is a furfy". I was also told by our top Infectious Disease Doctor here how he thinks it is nothing. Naturally being told what you want to hear sounded good at the time - but I never got better!" M. 7 June 02 "After $7,000 of invasive testing, my GI specialist concluded that I was suffering from IBS and would have to "live with it. I fired him soon after that, and instead took control over my own treatment with the help my GP. In less than 10 days, we had positive, irrefutable evidence of a severe infection with the parasite, Blastocystis hominis . After treatment with Flagyl and tinidazole the symptoms returned. Despite anecdotal evidence and medically documented evidence in various medical journals that these drugs have failed to permanently cure in Blastocystis hominis infections, it is the drug most commonly used to treat Blastocystis hominis infections. (March 02) "I just found your site....I can't believe I'm not alone in all this. I'm so angry with my idiot doctors who've been telling me for 8 years that I've got IBS and have to learn to live with it. Allright for them to say with 2 children to bring up. I just been tested thro Great Smokies and it came back positive for Dient. fragillis and another bug - B.hominis I've had bad diarrhea and bloating for years - too scared to go outside cause scared of "accidents", lost my job, been very sick with a burning feeling on my skin, cant eat much and feeling sick and daily headache" ML Jan 02 " ......1st diagnosis of Bh was dismissed by NHS ( Britain's National Health Service ) about 12 yrs ago. Was re-diagnosed by Doc in Aus 1996, who put me on a herbal cleanse called Rise+Shine; which made me very ill, so I didn't complete it. I was told I had M.E., 12 yrs ago, (hence my dilemma as to what's causing what.) Symptoms, currently are IBS: (gut cramps, bloating, nausea, night time hunger; consti/diarhoea/steatorhea); dyhydration; muscle/joint pain+fatigue; poor thermostat control; sleep disorders; CHRONIC fatigue, blurred vision, migraines.... Janine - 31 July 02 "I have been feeling so sick for the past 9 months. I have taken two stool samples and they both tested positive for Blasto. My first symptoms occured when I was deployed to Kuwaitt this past November. We were told not to drink the water there, but I used it to brush my teeth. I had to go to the hospital not too long after I got there and I was in extreme pain. I was shaking throwing up and so dehydrated. I had never felt pain like that before, I was hoping to just die. Well, the millitary doc's said I was just dehydrated and that caused my intestine to stop working momentarily and once hydrated I would be fine. Ever since then I have not been the same. I would wake up in the middle of the night walk out my tent and throw up. I did this for a week straight. My bowel movements have never been the same. I have constent water diahreah and every once in a while it's soft and basically like rubber cement. I was living in Las Vegas at the time and when I moved to South Carolina I found a Doc that was willing to work with me. I first took flagyl, (felt better while on, but everything came back when done) then flagyl and bactrin. This combo made me feel really sick while on it and I felt better after. Then it came back three days later. I went to a GI specialist last week and I see him again in a week and a half, but he says he thinks it's IBS. I am not currently in the Air Force, but am looking to get back in, but I can't with this. Please help, I don't know what else to do posted by Stefan on message board. August 9 02 The next e-mail was received from a woman who has been diagnosed with Irritable Bowel Syndrome, despite a positive test for Blastocystis hominis: "I am currently suffering from what my Dr. thinks is IBS . My symptoms began with a feeling of nausea, fullness, bloating, intermittent diarrhea and constipation . Treatment was refused. (Nov. 01 ) For 12 years the following US woman travelled and worked in tropical and third world countries considered high risk areas for contracting parasites . In Dec 2000 she began to suffer gastro-intestinal symptoms including diarrhoea, bloating & belching. She was twice admitted to the Emergency Room for administration of IV fluids due to dehyradation. She wrote: "one of the most frustrating experiences was indeed getting past my primary care physician! He had a single test for ova & parasites done at a neighborhood lab and when that came back negative, he outright refused to write me a referral to see a doctor at tropical medicine even given my extensive work related travel in the tropics." She had no further tests and her physician " insisted " she try a month of the drug Ranitidine followed by Pantoprazol. These drugs are used to suppress stomach acid and have the potential to cause bacterial overgrowth leading to gastritis ( Gastroenterology. 2002; Pharmacol Toxicol 2001 ) . The drugs didn't help, and a month after being on the second drug, Pantoprazol, she suffered a severe attack of diarrhoea and dehyradation. The emergency room doctor advised her to stop taking the drug immediately and after re-hydrating her intravenously she was tested for Shigella, Camphylobacter and Salmonella. The tests were negative. She then returned to her primary care physician and told him that she: "wouldn't leave his office until he wrote me a referral to see someone at tropical medicine. The parasitology lab found the B.hominis in large numbers in both two of the three samples where it could be seen in a TFT test, that is, the direct preparation, not the ridley concentration." Having tested positive for B.hominis, she then consulted an expert in tropical medicine. However, her problems were far from over: " He wasn't convinced that B.hominis was the source of my gastro-intestinal distress . He nonetheless put me on a one-time high dose of tinidazol (2 mg) given my travel background, and said that would be the last that he would see me . The tinidazol made me very ill for several days thereafter. I went back to the specialist at tropical medicine, and begged him if he could please authorize another TFT test at the parasitology lab. It came back again positive in large quantities for B.hominis. The specialist told me I was swallowing air, and sent me home." received by E - April 2002) A diagnoses of Blastocystis hominis didn't help this person who is still trying to find a doctor who will take his positive test seriously enough to treat: "I still have B.Hominis. I am told that it is not a pathogen. Where would you sugest that I can go for help? " A, May 2001 "I have just received results this AM that my 11 year old daughter has Blastocystis hominis. This was discovered only after insisting for years that something needs to be done about her severe abdominial pains. She has always for as long as I can remember had abdomonial pains, usually noticed after eating, therefore diagnosed with IBS.. A year ago I insisted that Xrays be taken to see if there was a twist in her intestines, negative. Four weeks ago she started having more severe pains. Our doctor order an ultra-sound with negative results. Finally a stool sample revealed this! I feel like a bad parent for not being more persistant with my doctor. My daughter has been in pain long enough". J., 24 April 02 "When I arrived at work I found this website and have learned a lot. The one thing I can not find are possible side effects of the medication. "I have seen many doctors over the past 3 years, and had many stool tests. All have diagnosed me with irritable bowel. A new doctor recently ordered 3 stool tests in jar containing some kind of preservative - they came back positive for D.fragilis and B.hominis." L.M. 2/01 A young Canadian girl has tested positive for both B.hominis and D.fragilis. Extremely nauseaus and suffering from occasional gut pains she is also grossly underweight for her heigh - 67lbs (37 kilos) & 5 feet (1.52 metres). As she failed to respond to Flagyl (metrondazole) her doctor then diagnosed her as anorexic. A friend of the family explained: "he accused the mother of being a smother mother and that the child had anorexia and needed psychiatric help." The mother took her child to the hospital: "The hospital sent her home saying that she would die if she did not eat and no they won't admit her." Misdiagnoses of anorexia and/or psychiatric illness is common among long term sufferers of parasitic illnesses. Many people infected with B.hominis or D.fragilis find themselves being referred for psychiatrist assessment at some stage in their illness. This is likely to continue until parasites are recognised by all clinicians as a cause of many chronic disorders. March 2002 It
was six years before A. from Canada was diagnosed with B.hominis. The following was received from a specialist by a woman seeking help for her debilitating symptoms. She has a positive test for Dientamoeba fragilis but has been unsuccessful in finding a doctor who will prescribe appropriate medication to treat her Blasto infection. Because her symptoms have are severe and long-standard, and standard antibiotic therapy has failed her, many doctors have given up trying to treat her. This scenario is common and was experienced by the author of this site. Here is the specialist's reply:
Sent by AF, July 18 2001 D. from the US was diagnosed with and treated for Entamoeba histolytica. Follow up stool testing returned negative for E.h. but B.hominis was found. Her doctor, however, refused to treat her for Blasto., because he did not believe it could be the cause of her remaining symptoms : "... I should also mention that I have two other bugs in addition to E. h . I was told by doctors to disregard these other two bugs (E. nana and Blastocyst Hominis )." 25 Dec 01 "A friend of mine has a rather severe, persistent blastocystis hominis infestation that survives antibiotics, and the M.D.s are not doing much for him." V. Feb 02 The friend of a woman diagnosed with D.fragilis was also diagnosed with other parasites, one of which was B.hominis: "her doctor said the other parasites were not "proactive" and therefore were not treated with medication.". A. Feb 02 "i also want to tell you Jackie that I discussed blasto with my doc. He said, "Blasto is so common its nothing". F. 13 March 02 " Your website is wonderful. It's amazing how we've all had these same experiences with incompetant doctors" Bh sufferer: Feb 02 "I still have B.Hominis. I am told that it is not a pathogen . Where would you sugest that I can go for help? " (e-mailed by A. May 2001) " I was diagnosed with and treated (metronadizole) for DF about a year and a half ago. At the same time I was also diagnosed with blasto, but my doctor told me that it did not cause problems with the GI tract . I have recently (past month) had diarreah again, and tested for blasto. hom. once again. The doctor has prescribed metronadizole once again, and I've seen some improvement, although I'm afraid that once I'm finished with the medication, the diarreah will start again." (e-mailed by B 26 Dec 01) Justin's doctor believes that B.hominis wouldn't cause symptoms in the stomach because: ' Blasto resides in the large intestine, 4 metres from stomach'. He says can only be treated with diet and acidophofolis. " March 10 02 The following woman believes her mother caught Blasto. while on holiday: "She has been diagnosed with all kinds of things before a doctor finally tested her stool and realized that she was carrying Blastocystis hominis . She has been dealing with this for almost 2 years now, and as it seems the doctors that she has gone to, for one reason or another, haven't been able to get rid of these 'bugs'." A trip to Indonesia left this woman with symptoms of "bloating, gas (foul), abdominal pain, cramping, loss of bowel control, headaches, possible rectal bleeding". A g/i physician diagnosed IBS and advised adding fibre to her diet, the drugs Donnotol and Bentyl, none of which made any difference to the symptoms. Her specialist refused to help her further. However, a stool test ordered by her family physician revealed "significant Blastocystis hominis +ova". She was treated with standard antibiotics, a stool test returned negative but she is still symptomatic* "I feel so hopeless. Sometimes extreme pain. I am so frustrated. I AM EXTREMEMLY FATIGUED. I don't believe this is IBS, it seeems so unrelenting no matter how many dietary modifications. I have not had a single day where I have been symptom free. Almost any food aggravates my stomach, except cereal with soymilk." The gynecologist nurse
held the opinion that "relationship problems
probably account for my health problems - is that another way of
saying its all in my head? " "Three years ago I had a back operation and have experienced a lot of fatigue ever since. At first I thought it was a natural reaction to the operation and healing and also periomenopause. Last year Blasto. was discovered and I have been researching options ever since. Looking back I realize that I have had rectal itching since I first went to Mexico in 1972. Stool samples showed Blastocystis last year. I did a parasite cleanse. I was also on a candida diet. There was no improvement. Another three stool samples in January have again shown Blastocystis. " received Feb 02 "I have just received results this AM that my 11 year old daughter has Blastocystis hominis. This was discovered only after insisting for years that something needs to be done about her severe abdominial pains. She has always for as long as I can remember had abdomonial pains, usually noticed after eating, therefore diagnosed with IBS. A year ago I insisted that Xrays be taken to see if there was a twist in her intestines, negative. Four weeks ago she started having more severe pains. Our doctor order an ultra-sound with negative results. Finally a stool sample revealed this! I feel like a bad parent for not being more persistant with my doctor. My daughter has been in pain long enough. When I arrived at work I found this website and have learned a lot. " JL. April 24 02 "Yes, after seeing a whole bunch of doctors, who didn't know how to handle the situation and didn't believe B.H was pathogenic, I finally got in touch with a doctor who knows about B.H. and is interested. " P R. 1 May 02 |
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