Well done, Andy. I envy your abilities. My exercise regime is a lot less. When I wake up, it's up, down, up, down. Then the other eyebrow. Up, down, up, down, Then I get up and if I have the energy I do 10 minutes weeding. Then I go in and have a cup of tea and watch TV for 4 hours.
Mind you, if I come out the hospital and my bus is at the stop, I have been known to run. Maybe not in the full sense, mote like a slow-motion grizzly bear on a David Attenborough documentary.
I have some mystery problem that defies all NHS masterminds. Fer example, I feel I have some energy then I eat something and my energy dissipates. 18 months of cold symptoms but no infection.
I've been puzzled as to why specialists have been saying "I don't know the cause of your problem so I'm referring you back to your GP, Case closed." Then I read that specialists who have to struggle by on a meagre £75,000 PA can nominate themselves for a bonus of £75,000 PA. If they pass the criteria the first year, they automatically get it the next year. It's reviewed every 5 years. If they fail the criteria then, they are no longer listed in the bonus category but due to a loophole, they still get the money!
By the way, you probably know the police have 2 numbers now. 999 for emergency and 101 for everything else. But did you know the 101 costs 15p for each call (of any length) and the money goes to Cable and Wireless for setting it up? And the police pay 0.034 p for each call they receive.
Everybody sing now..."The lunatics have taken over the asylum..."
I’ve been considering joining the ‘online community’ for
over 3 years now, and have finally decided it’s time to move into the 21st
Century and take the plunge. In 2009 I
was diagnosed with HCL and treated with Cladribine, and then again with
Pentostatin in 2011. Like Yorick, I have
felt like I’ve had the flu for the last 3 years, and once I’ve eaten I struggle
to stay awake, too. I have actually felt
very unwell since the first treatment, but as it’s “nothing to do with leukaemia or the chemo”, I’m not getting any
help from the docs. (They’ve nearly
convinced me that it’s just my imagination!)
I’m so pleased to find others who have had similar problems
– it can seem a bit lonely sometimes.
I’ve got an appointment next week with Haematology but I’m guessing it
will be,”Go away, and don’t come back for another 3 months.”
That’s my whinge over with, and I feel a lot better, thank
you!
I am so pleased that I am not the only one living in an asylum taken over by lunatics. And also very pleased that I am not the only one with feeling sick and tired symptoms who is told to come back in 3 months. I will cancel my appointment with the psychiatrist ... thought this was all in my mind! Take care everyone. From an awfully cold fed-up South African.
Thankyou both for this confirmation. I've cancelled my application for the Home for the Elderly Bewildered.
Have alook at the website for Dr Myhill of Wales. She's a GP who has unorthodox view and believes that candida and gastritis stop the body from absorbing enough nutrients. So the muscles don't get the glucose etc, and makes them weak and painful . She believes this is the cause of ME.
Have a look at Candida on Google. If the stomach isn't producing enough acid to digest food, it lays there and slowly ferments.Candida feeds on sugar and changes into alcohol. That would explain a lot of my symptoms. But there are no apparent tests for Candida. Or cures. One oncologist said when he operated on cancer patients he always seemed to find Candida which appears white on the organs. (He thinks it causes cancer). He treats cancer patients with sodium carbonate which is one of the few things that kill fungal infections.
I've tried the bicarb recipe 2 or 3 times but either it didn't work or the candida came back. I take Actimel each morning and later a yoghurt. Actimel has the gut bacteria (candida usually lives in the gut) and the yoghurt calms my stomach inflammation.
The ENT man said I had no infection but I pointed out I clear my nose with bicarb or salt solution.. Surely that would kill infection temporarily. I think he'd be happy for me to do that for the rest of my life. So he referred me back to the GP. Unfortunately after so long it stops being efficacious.
Even Cancer Research won't investigate candida until the WHO declares it's a cause. Maybe we should start a Research Candida charity. Or get Wendy , dressed as spiderwoman, to climb Nelson's Column with a banner saying "Death to Candida!" It's a thought.
I'm off to surf the internet now for unorthodox cures. Onward and upward! To infinity and beyond! Yo, silver, away!
Tell you what, can I have your place in the Home for the Elderly Bewildered? Seems like you've flushed a few other people out who have been fobbed off by the medics, what do we do when the experts end up scratching their heads?
Good that the forum has been quite lively lately, always interesting hearing about everyone's experiences.
And I like your spiderwoman idea, not sure if Wendy will go for it though....
now if you'd suggested catwoman, she-ra or even hit girl i would have been straight on it but asking me to dress up as spiderwoman is just not my thing x
Alright, Wendy, you can be Catwoman as you've already got the costume. And I'll hire some scaffolding to make your climb easier.
I phoned a Dr Hembry's office today who is on Dr Myhill's list of unorthodox doctors. I explained the problems but as they were in Bristol and I'm in Kent, I couldn't visit personally. Could they post me a test for anything? (Can't find any on Internet). The receptionist said she'd get back to me.
I have miniscule medical knowledge (I'm starting to think some doctors do too) so I can only apply logic. But if I get terrible itching in my nose and eyes periodically, could this not be a yeast/fungal infection? When my nasal passages close up, could this be the inflammation? Maybe they expect it to be red, but if the candida gives the surface a white coating, it may disguise the redness. How can a doctor shine a torch up my nose and say he can't see an infection? Aren't germs invisible? Has he got superhuman vision?
Can't find any candida tests. Spitting in a glass of water has been found unreliable. There is a symptom test but doctors wouldn't accept that. So we're up a gumtree without a paddle. I find it hard to believe that one can have a serious fungal infection internally without it ever surfacing though sweat or breath. I'd have thought a mouth/nose swab would pick it up. I think there is a stool test that can be sent by post. But most people have candida in their gut anyway.
Now, call me Mr Silly if you will, but if candida in the stomach converts sugar to alcohol, then if I don't drink and give myself a sensitive breathalyser, a positive reading would prove my stomach has become a brewery. I think I might suggest that to Dr Myhill. Perhaps we can share the Nobel Prize. (She can have the title and I'll have the money).
In the words of Kermit the Frog, "It's not easy being green!" By the way, I have a rash on my feet which is now spreading to my legs. It's like orange freckles with a brown area that's getting bigger. I showed my GP who offered some antiseptic cream. I said would Savlon do and she said it would be a start. But it didn't have any effect. I'll have to go back but it means queuing up o/s the surgery at 8 in the morning. They don't like giving advance appointments. By the time I get there it'll be all over me. At least I'll win the fancy dress competition as a giraffe.
I remember once I was given a lift by a beautiful woman. As she drove, she told me she was a witch and she'd prove it. Seconds later she turned into...a lay-by.
All for one and one for all. Good luck, Carwoman Wendy.
Hi Chris ... for what this is worth. Candida is a fungal/yeast infection made worse by eating things like fungi and bread. It is prevalent amongst HIV sufferers and those who have been on antibiotics for a long time. I get it every time I have to be on antibiotics for an infection. It starts in the mouth and goes right through to you know what (specially in women). Then it is called systemic candida. Not very nice and also gives you an awful feeling in your stomach. The treatment that helps here in Africa is a drug called fluconazole ... and for a bad candida infection you take one tablet a week. They are very expensive here (around R300 per tablet). Anyway ... that is my little bit on candida for you. Hope it helps. Dianne
been to see consultant. neuts are 0.2 so he was surprised i am okay. in fact i am very good apart from being so very tired. have turned sleeping into an olympic sport and i am going for gold. he agreed we san start retuximab tomorrow. very pleased as i want to finish by august.
have got my catwoman outfit sorted. but i have forgotten why! must be all the medication!
Dianne, I spoke to Dr Myhill's office today. The only test they know of and do for candida is the stool sample. It's £150 and £40 for the doctor's letter explaining the results. I pointed out that everyone has a small amount of candida in their gut but she said this test would show up large amounts. As it prevents some absorption of vitamins through the stomach this doctor can provide spray-on vitamins to absorb through the skin. (I'm not convinced about that one).
I'm still tempted to buy a breathalyser. She does have a no-carbohydrate diet detailed on her website. Candida feeds on these but I'm not sure that one can starve candida to death. Assuming this is my problem.
Anyway, I felt well enough to cut the final two floor tiles in my dining room, ready for laying tomorrow. Only been sitting there for two years.
I'll have to wait for divine providence to intervene and point me in the right direction. I'll make some enquiries about fluconazole. I think the rand conversion is £30 per tablet. But I wouldn't mind paying that if it solved my problem. Que sera sera.
