tag:blogger.com,1999:blog-7869026864100513813.post9131402559353193856..comments2023-10-21T15:42:41.581+01:00Comments on Lewis Jeynes: UpdateSamantha Tolmiehttp://www.blogger.com/profile/06734445984285650172noreply@blogger.comBlogger2125tag:blogger.com,1999:blog-7869026864100513813.post-41334311955835982362009-05-30T02:33:58.608+01:002009-05-30T02:33:58.608+01:00Joanne just told me about your children and your b...Joanne just told me about your children and your blog!<br />Wow! you realy have your hands full. I have a friend here in Canada who is a heamophiliac and I have Lyme so I have a bit of a clue what you are going through.<br />I hope you will look to something like Eurolyme or Canlyme or Lyme disease action group or an other Lyme group for support. Without their help I would be nuts by now.<br />If you have the fortitude to tell your story to the newspapers, radio stations and / or TV stations you would help people around the world. <br />If my arms could reach you from here I would give you all a BIG hug so please accept a hug from me by email Is that called an e-hug??Alisonhttps://www.blogger.com/profile/14042055154314428287noreply@blogger.comtag:blogger.com,1999:blog-7869026864100513813.post-26249859879568910632009-05-29T14:20:54.617+01:002009-05-29T14:20:54.617+01:00I have just read your news with tears. As you know...I have just read your news with tears. As you know I have suspected that Lewis could have been sufferring from Lyme disease and with the medical controversay was worried that you would not have him adequately tested and assessed or I thought you had dismissed the possibility when the first tests were negative.<br /><br />I am so pleased to hear you have a diagnosis. Yes it is going to be such a long struggle to recover his health but step by step you will succeed in at the very least improving his quality of life and who knows many of his symptoms may be reversed. Children seem to respond much better than adults.<br /><br />I know you will want to read and educate yourself on lyme Disease ASAP and the best way is through www.lymediseaseaction.org.uk and also through Eurolyme. <br /><br />I started a gardening blog when I had recovered sufficiently from Lyme Disease to garden again and on my blog at the top right I have put links into the many research sites that I have found helpful. They are just a start in your long journey.<br /><br />http://joanne-orangecottages.blogspot.com/<br /><br />Such a waste of a child's life because of just a handful of people having a stranglehold on diagnosis and treatment, leading our doctors and consultants to be mis informed and misguided by IDSA guidelines which have been discredited and under process of review.<br /><br />You will meet nay sayers amongst doctors but you need to be strong and fight for what you feel is best for Lewis.<br /><br />I ask one very big favour, will you report back to the journalists that wrote your various newspaper articles and get them to publish an update. There is no need to wait for improvements they will come in time. This is of such newsworthy copy in view of the horrendous time Lewis has sufferred and the publicity may well help others including children to get diagnosis and treatment.<br /><br />I know this is a big ask but it is so difficult to get the media to do any in depth reporting on Lyme Disease they dismiss it as soooo rare. Well if doctors don't look they don't find and not all blood tests are reliable at all stages of the illness.<br /><br />Give Lewis the biggest hug from me I will be following his progress. One day ILADS guidelines will become the norm and many more children and adults will have their lives turned around.<br />Love JoanneJoannehttps://www.blogger.com/profile/12905137222286141548noreply@blogger.com