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Child Length of illness: 1 year approx. Treatment: not stated Severity of symptoms: Severe Outcome: cured Hi Jackie, I don't mind responding - 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. C. Subject: adult Length of illness: less than one year Treatment: tetracyline x 1 course Severity of symptoms: Severe Outcome: cured Hi Jackie The good part it IS treatable and I am finally healthy. The treatment was brutal...but first the symptoms...for almost six months my doctor told me it was stress since I was writing my Masters thesis and my Dad had just died of brain cancer. For the most part, it seemed to act like irritatable bowel syndrowne...bouts of constipation and then weird painful bowel pains but then diarrehea at other times...some times I would not have a bowel movement for 3 days and then I would have diarreha. The most telltale sign for me was just feeling ILL ALL the time. I felt as if I was eating and hungry but I would feel faint and nauseated at the same time. As well I had food sentivities..milk would cause alot of pain..which made me think lactose intolerate but in fact this parasite causes lactose intolerance. The way I was diagonised was my doctor ran a stool culture and they were found. Some doctors will not treat this parasite since they say it is common to everyone..... I went on tetracyline..a very commonly prescribed antibotic for 10 days...except I was soooo sick (the dose was extremely high) I only took it for eight days. I lost 10 pounds (I'm not very heavy set) and felt terrible after. A follow up stool culture was run and they found some more, so I found a second antibotic, Diiodiquiol (sp?) that is specific to intestinal infections for 21 days. I also felt sick on this antibotic but not as severe. I didn't lose any more weight but I definately didn't put any on! The follow-up culture was clear. Now, I feel great. I am at my normal weight..... You are the third person to contact me about DF...... W. Subject: Child Length of illness: unknown Treatment: Iodoquinol x 1 Severity of symptoms: moderate Outcome: cured Hi Jackie, ......The drug iodoquinol was prescribed by our doctor (as suggested by a reply to my queries). There was an almost immediate response...he got his color back and has never had such symptoms again, i.e. periods of fatigue and pale skin. However I believe he is suffering from damage related to this beast (circumstantial for sure). He remains very shy (a learned response) of tomato based products, such as pizza and spaghetti sauces (tomato soup and ketchup are fine). His stomach (or perhaps lower intestine) remains sensitive perhaps not to tomatoes per se but likely to the added spices. A specialist confirmed Crohns was not it. Which came first, chicken or egg I can't say, that is, whether the infection and aversion to some tomato based products are related OR were they separate conditions. I believe they are related only because of the overlapping timeframes. Hope this helps...thanks for checking back. E Subject: Adult Length of illness: unknown Treatment: Iodoquinol x 2 Severity of symptoms: unknown Outcome: cured Hi Jackie! About my treatment - well I was treated twice with iodoquinol because the symptoms came back after the 1stlot. I feel much better, and have gained some weight. I'll let you know if the symptoms return again.... M Subject: Adult Primary diagnoses: IBS Length of illness: 1 year Treatment: Iodoquinol & Tetracycline - neither completed due to drug reaction. Severity of symptoms: moderate to severe Outcome: As at Sept 2000 E is still suffering symptoms of infection with D.fragilis. She has opted not to try drugs for the moment due to side-effects and tries to manage symptoms using dietary restrictions, garlic tablets and other alt. therapies. To whomever put the Dientamoeba Fragilis website together: Thank you so much! The information provided has been of great help and insight to me, ever since I was diagnosed last month with these nasty little pests. 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
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