Diagnosed with entamoeba histolytica but still confused

[cienanos]

I've been having a huge number of health problems for about a year now. It started suddenly with stabbing right-sided abdominal pain and progressed to a point where I was unable to get out of bed, having heart palpitations and sudden headaches and I wasted down to be as thin as a skeleton. It felt like my insides were eating themselves. No less than 14 doctors looked at my case before I was finally diagnosed by a tropical disease specialist with entamoeba histolytica.

During the months leading up to my diagnosis I tested positive for C. diff (I never had diarrhea, this was likely a red herring) and was put on 9 days worth of flagyl. I was then retested and the c.diff was gone. However wouldn't the flagyl have killed the e. histolytica too?

My MRI showed a few small liver cysts, no larger than 2mm. They were identified as benign by the radiologist. Is there any chance these cysts could be confused with amoebic liver abscesses?

I drank the water in South America nearly 10 years ago and got extremely ill (bloody dysentery, which I was told was due to an unspecified amoeba). This was treated with cipro and flagyl. Could this current thing be a resurrection of the same old infection, a chronic form that came back without the diarrhea?

I just started taking paromomycin so I haven't had time to notice any results. I really hope this diagnosis is correct since nearly every other medical condition seems to have been ruled out. If anyone has any experience with this particular amoeba please help me out.

[mkh9]

Hi and sorry to hear you are still ill. Did the doctor just do one stool specimen for parasites? If so they could have missed the E. histolytica cysts. Do you have diarrhea now? Also, what bacteria did they culture out and in what type of specimen? I think IBS is a catch all diagnosis also. However, it is possible you have something like diverticulitis. But I think you would be more ill and a higher fever. So, lets go over more of your results. It may clue me into what you may have. If not then I would see an Infectious disease doctor. But lets talk some more.
mkh9

[cienanos]

It's been three months since I finished treatment. I went back to the doctor and he said I was negative for E. Histolytica. I think things improved a bit... some of the most severe symptoms went away with treatment. However I am still having a lot of issues. I keep getting recurring bacterial infections with chills, my abdomen still hurts and is intermittently bloated, and every time I eat I get flushed and feel like I have a low-grade fever. I am so utterly desperate for help and no one seems to be able to figure out why I am not getting better faster, they only want to tell me that I have some IBS nonsense or to just "wait it out." Getting a fever after every meal is not my idea of "recovery." There is a lack of expertise about this illness, and all the repercussions it can have on the body, and I am so depressed about the outcome. There is no one left to ask for help.

[cienanos]

The C. diff test was a little inconclusive- I tested positive for GDH antigen but negative for toxin A+B. There was some debate among my doctors about whether to treat this. I never had diarrhea and this was likely unrelated to the parasites. I tested positive for C diff with a stool test, and after 9 days of Flagyl I retested as negative, though the test was done the same week I stopped treatment.

Sometimes liver cysts, particularly small ones like mine, are incidental findings on MRIs. It's not necessarily an indication that it has spread to the liver, but it's something I could bring up with a specialist. I have been having a lot of strange headaches and so I had a brain MRI about 2 weeks ago and fortunately nothing abnormal was found. A lot of my symptoms can be attributed to anemia or malabsorption so perhaps they'll all go away with proper treatment?

Thanks for responding, I know this illness, especially the chronic form, is not something most people have even heard of. Your post was very helpful and I will continue to follow up with my doctors.

[mkh9]

Ok, I hope you feel better. Let me know how it goes ok?
mkh9

[mkh9]

Hi, we are not doctors on here but I am a microbiologist and can try to give you some advice. So It sounds like you may have had an initial infection with E. histolytica and you were treated with just Flagyl and Cipro. The symptoms went away and they happened to find the C. difficile and were again treated with Flagyl. But you had all those symptoms in the beginning. Now 10 years have passed and you are getting diarrhea again or had it all along (I'm not sure here). They found a couple of E. hystolytic cysts on your liver. So now they gave you paramomycin which hasn't taken affect yet.  So I will say first that I think you may have had the initial infection with the  E. histo and felt better after treatment but what happened was it has two forms a cyst and trophozoite form The trophozoite form gets killed by the Flagyl but not the cyst form. The cyst form then got spread to the liver and remained there for a long time (apparently). In the meantime you got a lot of testing done and at this time did you have any more diarrhea or other symptoms? That is when they found the C. difficile. I think you probably were carrying the C. difficile. You have to have the toxin produced to have it cause symptoms. So when you took the antibiotic the C.difficile may have produced the toxins and you came up positive on the test. So, then after that became negative then it sounds like you still had symptoms so you got the MRI and they found the cyst. So the paramomycin is what treats the cyst form. So what they should have done initially is because you had severe symptoms to begin with and were positive for E. histolytica they should have given you both Flagyl and paramomycin to kill both forms (cyst and Trophozoite) and it wouldn't have spread to your liver. The other concern is has it spread anywhere else ? Hopefully, the paramomycin will take care of that. But, a lot of times they don't want to treat with paramomycin because it can potentially cause hearing loss. It isn't always but it is a possible side effect. So, talk to your doctor if you have any problems. If I were you I would also get your kidneys checked for cysts and a brain scan. Usually, it doesn't go past the liver but it possible. It does in a very small percentage. Probably an MRI would find those too. Ask your doctor if this drug will kill any cysts that got into the brain. Since the drug would have to cross the blood brain barrier.  As for the C. difficile. What type of test did they do? You might want to get retested to make sure it is gone.  This would be several weeks after the antibiotics are finished.
Hope you feel better soon. I'm sure you will be okay. I am just giving you a lot of information so that you can talk to your doctor about all these things and ask questions. I hope I didn't scare you. I don't think it went to your brain or elsewhere but since it did spread to the liver (this is where it likes to go if it spreads) then I would just check to see if they think you should do any more testing or if you want to do it it is up to you. See what your doctor says about that.
mkh9