tag:blogger.com,1999:blog-15890111.post4287217919230495840..comments2023-10-12T19:15:21.695+11:00Comments on Nicky's Itchy Feet blog: Nicky Reisshttp://www.blogger.com/profile/07409857304770649251noreply@blogger.comBlogger5125tag:blogger.com,1999:blog-15890111.post-55956130119881254922011-07-14T09:12:42.959+10:002011-07-14T09:12:42.959+10:00glad that you are improvingglad that you are improvingKeenahttps://www.blogger.com/profile/04872631822031248926noreply@blogger.comtag:blogger.com,1999:blog-15890111.post-84555512602031217742011-07-07T19:05:32.553+10:002011-07-07T19:05:32.553+10:00I totally agree about formulaic treatment for ME, ...I totally agree about formulaic treatment for ME, Nicky. I think I told you I tested positive for Lyme Disease and was put on a/bs for a good while. I did find it helped (herxing wasn't nice though!)<br /><br />As long as folk don't get themselves confused and realise that we are all different, even within the ME spectrum, then knowing what has helped others can be a good guide. xxCATachresishttps://www.blogger.com/profile/10227422179439047735noreply@blogger.comtag:blogger.com,1999:blog-15890111.post-5262471190299198582011-07-07T18:27:37.410+10:002011-07-07T18:27:37.410+10:00Hi Caro,
Thank you for your comments! Yes - I com...Hi Caro,<br /><br />Thank you for your comments! Yes - I completely agree that diet and pacing are "damage limitation" only. Although the diet has helped me enormously I know that it's not a cure, and also that for many people with ME diet makes little difference. What goes on in the UK is criminal, and I'm feeling so lucky to be here in Melbourne where I can get treatment. I hope that by spreading information the NHS will eventually be shamed into providing proper testing and treatment. <br /><br />I've been prescribed a regime of antibiotics, probiotics, and vitamins/supplements based on my test results. I'll share more of this information soon. But all treatment is individual - I don't think there's any one formula that fits everyone for this disease. This is why proper testing is so important.Nicky Reisshttps://www.blogger.com/profile/07409857304770649251noreply@blogger.comtag:blogger.com,1999:blog-15890111.post-67918539493088992832011-07-07T18:08:22.467+10:002011-07-07T18:08:22.467+10:00That is so good, Nicky. I totally concur with rega...That is so good, Nicky. I totally concur with regard to the food intolerances. If only more so called CFS specialists would look into this side of things.<br /><br />I know I have improved since giving up gluten, lactose and refined sugar (mostly!). Unfortunately where I live once one is given the pejorative label of "CFS" you are just left on the dust heap. The real diagnosis and treatment therefore is up to the individual to devise as best they can using the "suck it and see" model!<br /><br />I think you might agree Nicky, that all we are doing is a kind of damage limitation exercise with the diet and pacing. There is no doubt that the cause of this horrible condition is still within us, XMRV/MLV ..... or whatever!<br /><br />Well done on your perseverance in getting things sorted. Will you be sharing what vits etc were prescribed? xxCATachresishttps://www.blogger.com/profile/10227422179439047735noreply@blogger.comtag:blogger.com,1999:blog-15890111.post-87379301341817419632011-07-07T14:31:23.920+10:002011-07-07T14:31:23.920+10:00Hi, my names Tim and I’ve been reading and enjoyin...Hi, my names Tim and I’ve been reading and enjoying your blog. I work for ME/CFS Australia as a volunteer and am writing an article in our journal about blogging with CFS. I was interested to know if it would be okay to feature you blog in an article about people who share their stories online. The journal only circulates amongst people with CFS in Australia and isn’t publically available. <br />Keep up the good work,<br />Tim Waud <br />timmywaud@hotmail.comAnonymousnoreply@blogger.com