Schistosomiasis

[bluebirder]

Sorry rather long: I was diagnosed about 20 years ago with Schistosomiasis while living in U.S. after paddling in fresh water in remote area close to Puerto Vallarta, Mexico. Attacked from knees down and smothered in red itchy dots. Treated by a dermatologist friend (in U.S.) with a one-dose pill (Praziquantel?). He said it would get rid of it and I had no follow up. He is now deceased and I cannot obtain records. There was a delay of more than 10 days between infestation and treatment.

Have had annoying health problems since and now in 50s. Have read 'Guess What Came to Dinner' and this, and further research, confirmed my fear I may still have this parasite and the one-dose pill may not have eradicated it at the time. Have suffered with skin problems since that time, and also joint and bladder problems. I now live in the U.K. NHS doctors do not entertain any notion about this and will not do tests and I fear have now branded me as a hypochondriac! (Unbelievable, considering I was diagnosed and had this, but have no written proof). I did a parasite cleanse, but realise this would not get rid of my problem if it is schistosomiasis.

I do not know where to turn for help to determine whether I may still have this or not. It is almost impossible to get anything done here on NHS without going through GP and I cannot afford private medical insurance. I may have to consider some type of private testing but do not know where to go in UK or elsewhere without having to go through GP. I tried calling Tropical Diseases/traveller hospitals and clinics here but they will not see you without a GP referral! I do not know where I could go privately to have a sample taken, or maybe obtain a 'field kit'? to effect a diagnosis so that I could then go to my GP armed with this and seek treatment. Can anyone suggest anything please? Would be eternally grateful for any help or advice. (Long-time fan of ALG).

[Suerra]

Hi Bluebirder!
I'm so glad you found this forum! I feel for you- doctors here in the US are just as skeptical when it comes to any mention of parasites. Uni Key does offer a wonderful self testing kit, which would be an option for you even though you are over seas. You would just need to ensure expedited shipping across the pond to make sure your sample is viable when it reaches the lab here in the states. Here is a link to read more about the testing > http://www.unikeyhealth.com/product/GI_2_Panel .
Best wishes to you!

[bluebirder]

Hello Suerra,
Thanks for taking the time to respond and for the info. I had looked at this on ALG website and as it does not include Schistosome in the list of things it tests for, but more common parasites, I had assumed it would not detect this particular parasite. Am I wrong? I believe there is a particular 'field' kit that detects schistosomiasis which is used in Africa, but this may be a different strain as mine was caught in Mexico. The test you mention is not inexpensive, so cannot afford to spend money if I will still be no wiser. Also, would have to look into the shipping question. I will have another look at the website.
Bluebirder

[ProfAbby]

Hi bluebirder,

I'm going through a somewhat similar issue. I was diagnosed with schistosomiasis mansoni in March after being horribly sick and misdiagnosed for over 12 years. I'm still going through my own issues (as I do not think the praziquantel was 100% effective), but hopefully I can point you in the right direction of where to start.

Praziquantel Facts:
• It is relatively ineffective against juvenile schistosomes. If you were given treatment early, it may not have eliminated all parasites from your system.
• It is illegal in the UK
• A double dose is more effective than a single dose. Dosage is dependent on a person's weight.
• Timing between doses is important and determines effectiveness.
• It is between 70% and 100% effective in eliminating schistosomes.
• I read in a journal article that the best bet for eliminating schistosomiasis was to take multiple doses of praziquantel over 3 days and then repeat this in 2-3 months time. Currently, I am searching for this article as I am trying to convince my doctors to take this course of treatment.
• Since praziquantel has been the main treatment for schistosomiasis for multiple decades, there are strains of the disease that are becoming resistant to the drug.

As far as schistosomiasis goes, do you know what strain you have/had? According to the World Schistosomiasis Risk Chart that area is known to harbor schistosomiasis mansoni.

The mansoni strain tends to set up camp in your liver and then works its way down into your intestines from there. They are responsible for causing idiopathic non-cirrhotic portal hypertension, appendicitis, severe anemia, exhaustion, nausea, joint pain, ascites, esophageal varices, urticaria, as well as a host of other issues. A contrast MRI or CT scan can reveal eggs lodged in the walls of your intestines and muscles.

This disease is no joke. Without treatment it slowly and painfully destroys all of your organs. It is capable of breaking the blood-brain barrier, causing cysts in your brain and spinal cord leading to memory loss, black-outs, paralysis, coma, and possibly death.

For such a hideous and prevalent disease, it is sad that there are so little resources for people not living in an endemic area.

What to do next:
• You are correct, a parasite cleanse will do nothing against schistosomiasis. Schisto is a fluke. Flukes are the hardest parasites to get rid of from one's body. (I tried going the natural route first, too.)
• Yes, most doctors will think you are a hypochondriac. That is because they are bad doctors. 95% of doctors have never heard of this disease (or only heard about it during a 3 hour lecture about parasites in med school), let alone understand how to treat it. You will need to be your own researcher and bring the information to your doctor. Save copies of journal articles that you read to your desktop, print out copies and highlight. (I wish I did this step. Now I'm spending hours trying to find certain articles.)
• You need to find an GP who is understanding and will be open to your newly found information. This will take either effort or money. Since you don't have the money, be prepared to spend some time finding that amazing GP.
• Shop around for an infectious disease doctor in the UK that has heard of this disease. Make call after call until you snag one. I found mine because doctors thought I might have neurocysticercosis (I was having blackouts). So, I searched for top doctors who treat neurocysticercosis. There were only 9 in the US. I picked the closest doctor who happened to be 2 hrs away. Turns out, after listening to my story she thought to test me for schisto.
• Insist your blood be sent to a proper testing facility. The only place in the US that is reliable for testing is the CDC. It takes over 6 weeks to get results back since they wait for a large enough batch to test.
• Stool samples are unreliable for testing for multiple reasons: 1) schisto release eggs at random intervals 2) usually only people with chronic re-infections let out enough eggs that can be found in stool (and even then it is not infallible "only one out of three schistosomiasis positive individuals is treated" & 3) lab techs working from non-endemic countries usually miss the eggs if they are present.
• Take a trip to Hamburg, Germany. :0) The Bernhard Nocht Institute for Tropical Medicine is one of the best tropical disease hospitals in the world.
• You can always try to mail order the medication and dose yourself, but that is a little sketchy unless you know you have nothing in your brain or spine and your kidneys and liver are functioning normally.

Most importantly, don't be afraid to stand up for yourself. If they tell you nothing is wrong tell them you disagree. If you have all your research, make them present their case as to how they came to their conclusion and refuse to leave until you are satisfied with their answer. Eventually, you'll either see their point or they will see yours.

In the end, getting sick costs money. In the US private doctors cost over $2000 a visit. Be happy you are in a country that at least offers public health insurance. You could be in one that charges you $700/month for hideous care. I've spent over $15,000 this year with health coverage and I'm still fighting (and paying) for a cure.

[lizbeck]

ProfAbby,
Thank you for taking the time to write about your experience and offer such helpful advice. Sharing is what this forum is all about.
Welcome. Let us know how we can support you too.