Friday, May 23, 2014

The worm that turned

The last month has been a turbulent time for me. I have been to hospital 3 times and also started my new treatment (which will probably make some of you squirm).

For about a year I have been having intermittent kidney pain but urine and blood tests have been negative. A couple of months ago it got quite bad and my Dr suggested I better get a CT scan and go see a Urologist. I now have an xray place just round the corner and they are great at accommodating my needs. I had the scan and it showed 3 kidney stones but they were in a position that should not be causing any problems. So off to a Urologist. I was lucky and found one very close by who had ground floor access and agreed to usher me straight through so I wouldn’t have to sit down to wait or be in a room with other people etc. It worked quite well but unfortunately he seemed to think my pain was a neurological problem and not a kidney problem. These 2 trips out wiped me out quite badly so I decided I would just put up with it for a while.

A couple of weeks ago I woke up one morning and the pain was BAAAD! OMG it was bad. I called my Dad who came straight over and then he called an ambulance and we went to the closest private hospital which was Greenslopes. I wont ramble on but I made the fatal mistake of admitting I had Chronic Fatigue Syndrome and from that point on the service was beyond appalling. They wanted to do a blood test and urine test and I told them I had been unable to pass any urine for the previous 9 hours. They gave me 3 litres of saline and I drank a 600ml bottle of water and still had nothing. They did a kind of ultrasound on my bladder and found I only had 100ml of fluid in there .. so where was the other 3 litres? It was obvious that something higher up was blocked and stopping the fluid from getting down to my bladder and even the nurse commented on this. Eventually I was able to pass the 100ml so they did the urine and blood tests and told me they were all clear – no infection or anything else. (I later found out this was false. I obtained copies of those tests and they clearly showed an acute infection which the hospital chose to ignore). They did not do any scans other than the one on my bladder. My pain was fluctuating between 8/10 and 10/10. The Dr suggested I go home and make an appointment to see a pain specialist (for which she gave me a referral). I was in so much pain and so my dad asked that they admit me to hospital for further investigation such as a scan. Here is where it gets really interesting … the Dr’s response was ‘I am not authorized to admit patients to hospital and there is no one available who has that authority’ and she also said ‘if the pain doesn’t improve I suggest you go to a public hospital’. I was gobsmacked … how can a private hospital not have anyone on duty who has authority to admit patients? How can they do that and still charge money? And secondly I pay a LOT of money for health insurance so I have the privilege of access to better service and conditions at private hospitals, so why would I go to a public hospital?

I said I wasn’t going to ramble but it’s too late … oops!

So we were sent home. I remained in agony until the next morning. I hadn’t slept in 48 hours or eaten either. My Dad called another ambulance and we went to a different private hospital and yeehaaa they were great. They respected my CFS diagnoses and my chemical sensitivity and tachycardia and they immediately organised a CT scan which showed a kidney stone was stuck. The Dr was great and admitted me to hospital where I stayed for 6 days. During this times I had a few complications due to the CFS but the hospital were great and it was so good to be validated and have the problem resolved.

The week before the first visit to hospital I started my new treatment … WOORRMMSS!!!!!  Yep that’s right worms. I have infected myself with hookworms. It’s called Helminthic Therapy and the parasites are supposed to modulate your immune system. It sounds gross but how many times have you heard someone say that it’s good to let kids play in the dirt because it will strengthen their immune system. I wont go into why or how it works, there is plenty online if you are interested. What I will say is that it has shown it to be effective at causing remission for people with MS, Chrons disease, Ulcerative Colitis, all sorts of autoimmune diseases and food and chemical sensitivities. There have been a small number of people with CFS who have tried it and had some success. I have always felt as though at least part of my condition is autoimmune and I have quite severe food and chemical sensitivities so I felt it was worth a go. The risks are limited. The worms cannot multiply inside you, the number you inoculate with is the number you have until they die. Anaemia is a small risk as with any parasite but this just needs to be monitored with a blood test. Initially most people have a flare of symptoms and diarrhoea etc because the immune system sees the worms as an invader and responds as though it is. This should pass and with time positive things should come. If you experience anything that makes you want to stop you just take a worming tablet and kill them.

So … at about the 3 week mark of having my worms on board I started to get sick. I got the diarrhoea as expected but also got some scary heart type symptoms – chest pain, neck/shoulder/arm pain, shortness of breath and palpitations. Initially I thought it was probably just my body responding to the worms but over the following few days it got worse and scary. So a couple of days ago I called another ambulance and went back to the hospital which had been so great (Mater Private in Brisbane). They did blood tests, ECG and echocardiogram and there was no sign of heart attack etc. The dr suggested it was not really a heart problem but instead being triggered by something else such as viral infection etc. So this fits with the scenario that it’s being caused by the worms, after all they are an infection.

Today I still have these symptoms as well as swollen and sore lymph nodes which is definitely a sign of infection. So my plan is to just sit tight and wait for my immune system to calm down. It may take a few weeks which is apparently normal with the worms.

I am optimistic without getting my hopes up. I have tried and failed with so many treatments. This is the second last treatment I have on my last so it better bloody help!!.

P.S. yes that is a photo of a hookworm!


3 comments:

  1. Ah! Lee Lee! The worse pain I've ever felt was trying to pass kidney stones. Yep... 10/10. It made me collapse, pass out. I feel for you. And I hope your kidney pain gets gone!

    Thank you for telling us about the hospitals. It's good to know which ones are good, and which ones are outrageously shit. Thank you.

    And the worms! I LOVE the idea. And I plan to keep a close eye on you. You are my lab rat :-) Well done, and I think it's great that you keep searching for and trying different treatments. Especially after so many failures. I know about that, and I know about the temptation to become cynical. But. You don't. Optimism without hope. I like it. Thank you Lee Lee. With love. Adrian x

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  2. I feel so angry thinking of you being dismissed like that at a private hospital. It makes you start to feel suspicious about what you should disclose. I'm so glad the other hospital was helpful. But geez you didn't need kidney stones on top of everything else. Fingers crossed that the worms do something positive. You have had such a rough time of immense & prolonged suffering. Hang in there, Leisa. Xx

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  3. The treatment you received at Greenslopes was appalling. At least you know not to waste you time there again. I am a little fascinated on how the worms get in. Interested on the progress of your new passengers. xxx

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