tag:blogger.com,1999:blog-22576999.post7205552543743524496..comments2024-03-16T10:39:00.522-04:00Comments on Live With ME/CFS: Disappointed, AgainSue Jacksonhttp://www.blogger.com/profile/14532098225905355332noreply@blogger.comBlogger7125tag:blogger.com,1999:blog-22576999.post-38775570600392139482013-06-30T09:34:23.916-04:002013-06-30T09:34:23.916-04:00Well, Tanya, probiotics are absolutely necessary a...Well, Tanya, probiotics are absolutely necessary anytime you take antibiotics - otherwise, you'll end up with a really messed up GI tract which affects the immune system, too...as it seems you have discovered! When you take antibiotics, be sure to take double the normal dose of probiotics and take them at least 2-3 hours away from each other (otherwise, the abx will kill off the good bacteria in the probiotics, too). Also, probiotics work best on an empty stomach.<br /><br />When I'm not on abx, I still take probiotics daily, just because the research is so solid. They not only help to maintain a healthy GI system, but roughly 70-80% of the immune system is in the GI system, so they are supposed to help with immune function, too. It's not that I noticed any big difference when I started taking them (over 10 years ago), but that the research and logic behind them is so strong.<br /><br />If you took those strong abx without taking probiotics, it might take you some time to build the good bacteria back up in your system. Also, there are many different types of probiotic, so experiment to find which ones seem to help you the most. I take All-Flora, a non-dairy based blend of 10 different probiotic strains, plus saccharomyces boulardii, a strain that targets yeast overgrowth....which might be good for you after all those abx!<br /><br />SueSue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-22155367392301330782013-06-29T11:12:29.183-04:002013-06-29T11:12:29.183-04:00Argh! It's so frustrating when your body decid...Argh! It's so frustrating when your body decides that it isn't going to let you do the stuff you'd planned to do. I hope the sore throat and mouth feel better soon.<br /><br />About the probiotics - I'm taking some at the moment following a course of hardcore antibiotics that left me totally wiped out. In your experience, do they help in general with ME/CFS stuff?Tanyahttp://momentarysolutions.wordpress.comnoreply@blogger.comtag:blogger.com,1999:blog-22576999.post-76382242436275112652013-06-29T06:35:40.805-04:002013-06-29T06:35:40.805-04:00Thanks for your reply Sue. I don't know anyone...Thanks for your reply Sue. I don't know anyone else who has ME/Lyme so it is nice to talk to you. I was surprised to be honest, I expected them to just give me treatment straight away. I also didn't expect to have to pay another £600 out :o( They are supposed to be the best (and one of only) clinics in UK and a lot of people there had travelled from abroad. I think they are confused because I got a diagnosis with 'Henoch Schonlein Purpura' (HSP) when I first got ill and that can also be triggered by insect bites, so they are doing a test to see if I have this certain bacteria usually linked to HSP. I still will feel like it is Lyme though if the tests come back negative. I guess there are other clinics abroad I could try. I will let you know what happens!<br />I get thrush quite badly and herbal remedies don't work, but like you I might need the medicines first.<br />I hope you are feeling better! My computer won't let me reply to your reply so that's why I commented under :o) Take care Crumpethttps://www.blogger.com/profile/16676191603287181496noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-37017332579477447202013-06-28T14:39:39.948-04:002013-06-28T14:39:39.948-04:00Sounds like you are making the right choice to res...Sounds like you are making the right choice to rest and not push through, despite 'plans'....I know, it's like after 11 years we should "be over it".....I actually find when I move from moderate severe to moderate mild that I'm harder on myself because there is more interaction with the world and seeing daily what I can/can't do compared to others. I hope this is a quick crashy....upnorthhttps://www.blogger.com/profile/04283010424792189579noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-19058049684491432592013-06-27T23:00:04.898-04:002013-06-27T23:00:04.898-04:00I go through flare-ups of thrush too and have been...I go through flare-ups of thrush too and have been fighting one off now for a few weeks, so far it hasn't come out but I know it's just waiting for the chance to do so. (I already took Diflucan as a precaution 2 weeks ago, but we'll see). I so know the disappointment you're feeling all too well so I'm sending you mega cyber (((hugs))), love and positive well wishes!!! (Been running into it a lot recently too). Bloomin'Chick Johttps://www.blogger.com/profile/08655635228669237336noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-87625631138144032352013-06-27T16:44:46.370-04:002013-06-27T16:44:46.370-04:00Hi, Crumpet -
Sorry to hear your trip wore you o...Hi, Crumpet - <br /><br />Sorry to hear your trip wore you out so! Sounds like you are dealing with someone who doesn't understand Lyme testing very well. All of the Lyme tests are very prone to false negatives, but you can believe ANY positive test result. There is no need to confirm with a second test. There are many, many reasons why a Western Blot might be negative when Lyme is actually present.<br /><br />Testing for Lyme is not fool-proof because of this tendency toward false negatives - the tests are only 1 piece of data for an experienced Lyme doctor to consider, along with history, exam, and presentation and pattern of symptoms. Even if both your ELISA and Western Blot were negative, you could still have Lyme - my own Western Blot was never positive, and I definitely had Lyme (and got rid of it!).<br /><br />As for my thrush flare-ups, I take prescription antifungals, like Diflucan, when I need them for bad flare-ups. I actually took it for 6 months during my Lyme treatment while I was on a very powerful antibiotic because all the herbals weren't enough. But now, off abx, if I can notice the early signs and go hard on the herbals and probiotics, then I can sometimes head off a full-blown infection. I am doing better now, by the way.<br /><br />Rest up - travel can be so hard!<br /><br />SueSue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-14107448017151495912013-06-27T13:24:24.774-04:002013-06-27T13:24:24.774-04:00Hi Sue,
Sorry to hear you couldn't do what you...Hi Sue,<br />Sorry to hear you couldn't do what you planned. This illness is full of disappointments as it is so unpredictable. I finally went to my Lyme clinic and now they are not sure I have Lyme at all, as only the ELISA was positive and not the Western Blot. So I have to have a MELISA test. I am very ill after going on a 5 hour journey to London. I hate resting! I hope you feel better quickly. Do you only use herbal anti fungals for your throat? Take care, CrumpetCrumpethttps://www.blogger.com/profile/16676191603287181496noreply@blogger.com