My last visit to the doctor (Dr. Keystone, the most respected tropical disease doctor in Toronto) did not go well. He looked at my massive pile of medical test results and concluded I cannot have active schistosomiasis, despite the positive biopsy from my colonoscopy in March. He's a smart guy and has dealt with Schistosomiasis (Bilharzia) patients for years. Scientifically-speaking, he said it was very, very unlikely that I could have active parasites for a number of reasons:
1) The average life cycle of schistosomes in a human host is only eight years. My parasites would be around 17 years old now. (Schistosomes do not reproduce in the host, so there can't be more than one generation of parasites. They can lay tons of eggs, but the eggs never develop into adult parasites).
2) I was tested twice in the past year for Schistosomiasis (blood tests) and BOTH came back negative. This test is supposedly very accurate -- the first time. I would've only been tested once, but the doctor was unaware of my previous test.
3) My symptoms are extremely rare in Schistosomiasis patients -- there have only been a handful of documented cases where most of my symptoms are reported. Also, the severity of my symptoms is rare.
4) The drug I took this past Spring (Praziquantel) is 90 percent effective at treating my form Schistosomiasis, and 100 percent effective with two treatments. There are "rumors" of schistosomes in West Africa that have built up a resistance to the drug, but no solid proof that this is true. I was treated FOUR times in the course of three months at twice the normal dosage.
My positive biopsy could have just been the dead remains of the parasites, which Dr. Keystone said can last for years. He said my symptoms are probably the result of the damage done by the parasites rather than by the parasites themselves. What he couldn't explain is the sudden onset of the pain and the fact that the plethora of medical tests revealed nothing. He couldn't explain why I was passing blood. He also couldn't explain why I improved so much after each dose of Praziquantel.
After telling me there was nothing he could do, he decided to take one more blood test. He said he was sure it would come back negative and that he was just doing it to prove his point that there are no living adult schistosomes in my blood stream. Last week the test results came back...POSITIVE.
Dr. Keystone said this is the first time he's ever heard of this happening, and he can't find any reliable research to show that this is possible, especially since my last two tests came back negative. Just to make sure, though, he is going to do some more testing. He said this past blood test showed that I actually have two different strains of Schistosomiasis. One of these strains may have been killed when I took the Praziquantel, which explains why I felt better. The other strain might be resistant to the drug, which is why I'm still experiencing some pain.
I asked him about treatment and he said he will have to order another kind of drug they used to use a long time ago to treat Schistosomiasis. He will have to order it from Africa, and it is not nearly as effective as Praziquantel. Hopefully it will do the trick (since there is no proof of resistance from schistosomes to this particular drug). If not, then he's not sure what to do. There are no other options that he's aware of at this point. This isn't your average parasite -- these are blood and liver flukes we're dealing with, and there are only a few drugs known to kill the adult worms.
Dr. Keystone had a serious change of attitude during this second visit. He was more concerned about helping me find answers and took my situation much more seriously. He actually listened to me! He said he wants to do a number of tests over the next few months to make sure my organs are functioning normally -- especially the liver. He also wants to do an "exploratory" exam to make sure I don't have bladder cancer (I about passed out when he explained how this would work -- and that I would be awake for the procedure!). He believes my colon and intestines are beyond repair and that I will most likely struggle with problems the rest of my life -- the damage done in these particular organs by the parasites is most likely irreversible damage.
Please pray for me as I undergo more testing in October. I will hopefully also take the new (old) drug in October -- please pray that it works! Continue to pray for miraculous healing. And continue to pray against the enemy. After I wrote my last article on the parasites many of you wrote to let me know you were praying more strategically, and my pain all but disappeared for the next three weeks! Even today I'm much better than before I sent out that update to our blog, and this happened despite my discouraging visit to the doctor. Someone was praying and I appreciate your prayers!
To be continued....
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