This is a post from a reader. She has been battling ongoing Schistosomiasis/Bilharzia infection while simultaneously dealing with a British healthcare system that has systematically failed to diagnose and treat the disease. Here is her story:
Beware of the temptation to paddle or swim in freshwater pools unless you are sure it is safe to do so! I hope my experience will serve as a warning to others. What happened to me opened up a real can of worms!
About 20 years ago I was travelling, living, and work overseas. During this time I travelled fairly extensively throughout the US; mainly California, Colorado, Arizona, and also Mexico, the Caribbean and Bahamas.
At that time my untainted blood provided a rare and tasty snack for the indigenous insect population. Despite my best efforts, I was targeted and bitten by probably hundreds of mosquitoes and other bugs.
During a camping trip in Colorado I was bitten by a tick, and at that time was oblivious to the dangers posed by possible Lyme disease. This was during the very early days of the internet when most people did not have access to the internet as we do these days when we can look up anything we want to learn about. The tick was not removed properly and it took ages for the skin at the bite site to heal. I have mentioned this to doctors but they do not want to know. and rather unbelievably many have never heard of Lyme disease – especially in the UK In fact, it seems bizarre that doctors in general seem to deny the existence of parasites in humans, and yet we routinely worm our cats, dogs, horses!
While on a jeep tour in Mexico inland in a rural/jungle area we stopped at a beautiful lagoon. Being oblivious to the dangers I went for a paddle and emerged with my legs, where they had been exposed to the water, covered in red dots. I had no idea what this was but it itched. There were many native people swimming and bathing.
A few weeks later I saw a private dermatologist and told him the history of the leg rash. He immediately said it was ‘swimmer’s itch’, schistosomiasis – a spirochete that lives in the water. He said that one dose of medicine would get rid of it and he gave me the pill to take. The rash eventually went away and I thought no more of it for years, though since that time I suffered with strange intermittent skin rashes. Saw doctor after doctor, who did not know what it was and diagnosed ‘folliculitis’. I had course after course of antibiotics, which would clear it up somewhat but it always returned.
Fast forward to 2004 and living in England. Prior to this I was still enjoying good health.
In approx 2006 I was walking along the street when my right knee suddenly gave way with searing pain which caused me to shout out loud. The pain did not go away and I could hardly walk. Eventually referred to orthopaedic surgeon who ordered MRI and found that there was a tear of the cartilage. There was no apparent cause for this (other than possibly weakness there due to an old ski injury). Had keyhole surgery and afterwards I knew the problem was still there. Had to go back and go through all this again, another MRI, which confirmed what I had been saying all along, that there was still a problem. A piece of the cartilage had curled behind something. The surgeon said this was extremely unusual and he had never seen it before. (Possibly the Bilharzia at work?).I had second keyhole surgery to clean this up. The knee has not been right since and, in fact, I began experiencing a lot of pain and problems in my joints. Specifically, stabbing pains in both knees, both heels, pains in my back, especially right side of mid back – stitch like pain which private osteopath said she has no clue what is causing it. Strange lumps and swellings appearing and disappearing on various sites of my body. Due to several years of inactivity because of the pain I have gained weight and so the doctors use the weight gain as the reason for everything.
In recent years a series of health problems struck which I believe seriously compromised my immune system :, including food poisoning, and a car accident where we were rear-ended quite violently. The accident left me with a lot of problems, the worst of which is chronic insomnia.
The medical establishment were very unsympathetic throughout this, as it was evident they thought I was making up or exaggerating these symptoms to claim compensation. I wish that were the case!!
Three years later and I still suffer with all of this. The chronic lack of sleep has, I believe, led to something taking over my body. We all know our own bodies and this is my sense of what has happened.
I have always suffered with seasonal allergies but in recent years the allergies have worsened, so that I seem to be allergic to just about everything, as well as food and chemical sensitivities. Allergy testing revealed nothing – other than some chemical and drug allergies.
Last year I began taking antihistamines for seasonal allergies and after a week or two could not understand why the back pain seemed much less bothersome. I then put two and two together and realised the improvement in the (now chronic) pain coincided with starting antihistamines for the allergies. I tested out this theory, going without and then taking it and it definitely was making a difference. I googled this and found a forum with many other people who had stumbled upon the same thing – antihistamines were helping their back pain symptoms. Odd.
I also read that many people with chronic back pain mysteriously get well after a long-term dose of antibiotics – so it seems it is a bacterial infection of some sort that is causing inflammation? I have read that it could also be associated with Lyme disease – and many people do not know when they are bitten by a tick. Many ticks are tiny and will just feast on your blood and then drop off. A classic sign is the bulls-eye rash but not everyone gets it. Having researched about Lyme I now know I should have kept the tick that bit me and checked for the tell-tale rash. I did neither and was oblivious to the dangers.
I mentioned this to a NHS doctor, and, well, you can imagine the response. They automatically think you are crazy. He tried to put me on antidepressants!
I tried in vain to talk to doctors about my travel history and my suspicion that I still had something that was picked up on my travels.. I was treated very rudely but upon my insistence they agreed to test me for shistosomiasis or parasites. Stool testing came back negative (no surprise, as this is known to be highly unreliable).
My health continued to deteriorate. For two years I pestered my NHS doctor, asking to have further tests to see if a lingering tropical infection was at the root of all the symptoms. I thought it sensible to rule this out. He said he knew nothing much about tropical diseases and refused point blank to order blood testing for Bilharzia – even when I offered to pay for it.
In desperation I sought out a natural practitioner who knew about parasitic infections. She agreed that I ought to be tested as she thought it highly likely I might still have something and agreed with my reasoning that the recent medical events had probably damaged my immune system. Stool testing revealed I had practically no good gut flora.
She arranged for urine and blood tests to check for Bilharzia (at a private lab). I was told it was best to check for bilharzia antigens, since the infection had been treated initially and also it was a while ago so it was unlikely I would still have antibodies. What we needed to know was not whether I’d HAD the infection, but whether I STILL had it.. The test came back positive for ‘Chronic, active Bilharzia’ with a recommendation that I begin treatment for it!!
I immediately contacted my doctor, rather naively thinking he would be as happy as I was that at last there was a possible explanation for my ongoing health issues. Quite the reverse! He was annoyed and did not know what to do. I had to suggest a referral to the Hospital for Tropical Diseases (HTD).
After an agonising six-week wait (routine appointment) I was seen at HTD. The doctor was nothing short of hostile. He said he ‘agreed with my GP that I could not possibly have ever had Bilharzia because I had not been to Africa.’ (which is ridiculous! Bilharzia is also in many other countries, including Egypt, the Caribbean, Corsica). He insulted the laboratory where blood was taken, insinuating they were some sort of shady back street place that could not be trusted. He refused to listen to my travel history, some of which I had printed up to give to him, so that I did not forget anything. He refused to look at my skin rash – which was present at the time (“I’m not a dermatologist – I deal with worms! worms!” – exact words). He said he would take more blood and test for bilharzia antibodies and something else. I pointed out that I’d had the antigen test done specifically because I was told that the antibody test would not be helpful in an old infection that had been treated in the early stages. I was practically in tears at this point and stunned by his attitude.
I expected to be seen by someone who knew and understood about the things that had happened to me, and the infections I’d had. Quite the reverse. He could not have been more rude. I can only assume that this was in response to whatever my GP had told him. Otherwise, surely he should have seen me with an entirely open mind as a new patient presenting with a dodgy travel history and a previously diagnosed infection.
Despite all this, as I got up to leave he wrote a prescription for praziquantel and handed it to me! To say I was shocked and confused would be a major understatement.
Rather fortuitously, I decided to try and contact the laboratory where the blood had been taken which had come back positive for bilharzia. I spoke with a very nice lady there who was very helpful. She told me (and also emailed me) to reassure me that there was no possibility that this could be a false positive, because the antigen is either there in my blood or it is not.. She also told me (THIS WAS QUITE SHOCKING) that they did not actually carry out the test there at their lab, but had sent it across to the Hospital for Tropical Disease!!! It took me a while to absorb what this meant….
After a week or so I decided to write to the HTD and ask to be seen again by a different doctor, and explained what had happened. Also that the dosage of the pills was different to what I had been told to take, and the instructions on the bottle were also wrong because there were not enough pills in the bottle to take the dose it described!.
My request was ignored, so I emailed the head of the department at the HTD. Still nothing. Eventually, I received a phone call from a department head there. A man who was also extremely rude and very belligerent. He was practically yelling down the phone at me. He said the same thing, that they agreed with my GP I could not possibly have ever had bilharzia because it does not exist in Mexico. I told him I was not wanting to argue about whether or not I’d ever had it, because I know I had it, I was diagnosed and treated. I now had a positive blood antigen test saying that I had ‘Chronic, Active Bilharzia’. He talked over me, insulted me, would not let me speak, and generally tried to bully me into submission. Finally, I asked what I was supposed to do now. At this point I had no desire to return to the HTD! He offered to refer me to see a former colleague of his who now works in Cambridge. I agreed to this.
I was so upset at the appalling treatment by these HTD doctors that I sent in a formal complaint about them and detailed what had happened. Their response? I did receive a letter of apology, and the HTD offered to refund my expenses for the wasted trip to London.
I asked to see copies of correspondence between my GP and the HTD and was shocked at the contents. Basically, my GP had almost apologised for having to refer me, insinuated I had mental problems, and clearly did not enclose the positive test result. The response from the HTD said, in a few lines, that they felt I needed to lose weight and had delusions of parasites! (In case you are wondering I do need to lose some weight but I am not huge!)
After a wait of a couple months I travelled to Cambridge to be seen. A 4-hour RT journey by car. I took my partner with me this time, a 6’2″ male and respectable businessman. I was not about to bullied again, and hoped that his presence would produce a better outcome.
We sat in the clinic waiting room for almost an hour and a half past my appointment time waiting to be seen. There was no apparent reason for the delay and I overhead a nurse tell a patient who came in after us that this doctor’s clinic was “running on time.” Well, not where I was concerned!!
Eventually I was seen, accompanied by my friend, and she gave me an hour of her time. I told her the history. She agreed with me that my history of what had happened and the swimmer’s itch, would lead her to believe that is what I had. However, she thought it was also possible I had the ‘animal type’ of spirochete which would not get into my bloodstream and cause long-term problems. I brought up the matter of the positive blood antigen test. She said these tests were not always reliable. She tried to fob me off with the ‘Bilharzia does not exist in Mexico’ routine. I challenged her as to how anyone could say that with certainty. Had anyone gone to Mexico and tested the population? Had they tested all the lakes and rivers? She relented and agreed with me that no one could know for sure! I told her I had researched this and knew that it was one of the world’s most neglected tropical diseases. If I had it then all I wanted was for someone to take it seriously and treat me so that I could get well!! It should not have been that difficult, surely.
I had not taken the praziquantel at this point and so the doctor advised me to go ahead and take it. She gave me specific instructions and wrote to my GP asking that he prescribe something for sickness in case I experienced nausea after taking it. By this time I was feeling very afraid to take the medicine at all – and still wondered if what I had been given was in fact praziquantel – or a placebo.
I took the medicine and felt nothing at all. No side-effects, or strange symptoms, it was as if I had taken nothing. Perhaps it was nothing. At this point I do not trust any of them.
Here’s where things get even weirder…
I had been in fairly regular email communication with the lady at the laboratory where the blood was taken. She had emailed me to confirm my blood was sent for bilharzia testing at the HTD – which appears the sensible option as it is close by.
Suddenly, the lab offered to repeat the test for me at no charge. I was very surprised. They sent the forms and test kit and I went to the local hospital to have the blood drawn and sent it off to them. No surprise I suppose that it came back negative for both bilharzias antigens and antibodies. That’s what everyone wanted! I was now extremely confused, frustrated, and not a little angry.
I emailed to ask how this was possible, especially after they had told me (in writing) there was no possibility that the original test could have been a false positive.
There was a complete change in the tone of the response I received from the lady, who had previously been friendly. I was left in no doubt that this was the end of the communication. As far as they were concerned I now did not have bilharzia after all.
(NOTE: I paid the lab £120 to have bilharzia urine and blood antigen tests)
I wrote to the laboratory’s compliance person, saying I wanted an explanation for all of this.
I was given the runaround for ages, and he would not be specific about anything.
Eventually (yet another big shock to me) He wrote to tell me that my blood had not been sent for testing at the Hospital for Tropical Diseases as they had told me in several emails, but had been sent to a lab in South Africa!
You can imagine my reaction to this news. This weird twist occurred after my formal complaint tot he HTD had been sent in.
I wrote to the lab and demanded to see proof that they had sent my blood to South Africa, shipping receipts, etc. I was ignored. I wrote to say that I was contacting a solicitor unless they provided the proof.
I called FedEx to ask how much it would cost to ship blood from London to South Africa and they said it would be somewhere in the region of £72 – just for the shipping (without the lab costs at the other end). So how could the lab justify charging me only £120 for urine and blood tests when this would clearly have left them out of pocket. Why also would they send my blood all the way to South Africa when they have the HTD on their doorstep?
The doctor in Cambridge has refused to follow up on the bilharzia or to prescribe any follow-up doses of the praziquantel. Why? I have no idea.
So, where does that leave me? Up the creek without a paddle – and, I can only hope, without Bilharzia!