ME/Lyme/CFS experience in the UK

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Cordelia-Mary
Regular Member


Date Joined Jul 2009
Total Posts : 20
   Posted 7/17/2009 8:05 AM (GMT -7)   
So many of you seem to be from US, I'm from UK and 'over here' CFS/Lyme Disease is often called M.E. or Myalgic Encephalomyelitis, however it is spelt, it is rotten and I've had it since 1989 and is now classed as chronic. Was hospitalised, been in a wheel chair, got out of it only to find few months down the line was back in it again. A disease people often like to poke fun at if they don't have it and I have heard it all: 'Lazyitis, Fallingapartitis, don'tcareitis, and many more, some unprintable. if anyone wants to moan about just 'feeling-tired-itis' and can't pull themselves together, or even begin to try and feel very lonely and fed-up for feeling a party-pooper to everyone else, write below now because I know how you feel (Oh yes I do!! after 20 years of it boy! I do!)


Cordelia-Mary
Regular Member


Date Joined Jul 2009
Total Posts : 20
   Posted 7/19/2009 3:06 AM (GMT -7)   
Just wondering if everyone is from America here and never heard of ME (Myalgic Encephalomyelitis) is there anyone on here who is not from USA and has heard of it?? Beginning to wonder now if I have stumbled across a useful site except is only for people roughly 3,000 miles away from me!!
Cordelia-Mary


rothko
New Member


Date Joined Mar 2009
Total Posts : 13
   Posted 7/21/2009 8:13 AM (GMT -7)   
Hi
I think that there are quite a few from uk, as I am. I only visit this Forum once in a blue moon.
I know it is difficult, especially if you've had this before it was even 'recognised' as an official illness. I've only had my diagnosed for a year. I tried not to tell that many people, only on a need to know basis as my is 'mild' so far, fingers crossed. It is very difficult to get others to understanding all this 'pacing' lark. I could not really explain to my friends that the reason why I was in bed all Sunday was because I picked them up from the airport at 5.30am...the day beforehand. Even after I tried to explain to them about the illness and that I may need to rest. They haven't got a clue.
The important thing is that we know how we are and that there are lots of 'sufferers' like us world wide.

rothko
New Member


Date Joined Mar 2009
Total Posts : 13
   Posted 7/21/2009 8:18 AM (GMT -7)   
PS. There are lots of very active UK forums too.

Cordelia-Mary
Regular Member


Date Joined Jul 2009
Total Posts : 20
   Posted 7/21/2009 9:28 AM (GMT -7)   
Thank you so much for a first reply. I was feeling very lonely on here. There may be a lot of sufferers worldwide, but an enormous amount of fit people also. Have just tried to get myself off one of these profile/blog/message things called 'Meet Your Messenger'. In my profile pic I look fit as a fiddle, and all the people who have shown an interest etc are sporty, working, thriving youngsters mostly and I then feel such a dork when I 'chat' as my social life is so limited because of constant fatigue. Any chat thing sees my initial popularity soar and then drop like a stone when I can't compete half the time. It is very depressing because inside my tired body is a fit one trying to get out, but can't. I started on here, and am beginning to shed my inhibitions about moaning how I feel. it is an enormous relief to find other people moaning and complaining too and being accepted for who they are instead of pitied or ridiculed, so thank you so much. Please could you help me and explain how to find the thriving UK forums, also, if possible, I would be glad to find other UK people who suffer from Restless Legs Syndrome (RLS) or Ekbom syndrome, which is the correct name. It is absolute HELL, and I have to say it is the one thing for which I tried to end my life but got found in time??? moot point; I haven't tried again, but it is miserable. Would be grateful for any help you can offer me, thanks.
Cordelia-Mary


rothko
New Member


Date Joined Mar 2009
Total Posts : 13
   Posted 7/21/2009 12:34 PM (GMT -7)   
Hi
 
These forums are great for getting in touch with people who understands and listens and the odd 'rant', but every one is different. I am not sure whether these links are allowed on here but here goes. Otherwise just do a search for cfs/me forums and decide which one is for you. There are also the official ME organisation that has certain local groups.
 
 
 
 
 
 
Hope you find these useful. :-)
 

Cordelia-Mary
Regular Member


Date Joined Jul 2009
Total Posts : 20
   Posted 7/22/2009 4:57 AM (GMT -7)   
Brilliant, thank you so much. Those are really useful and helpful and I'm sure that's the whole point of this - help one another and understand the need and you have; thank you :-)
Cordelia-Mary


rothko
New Member


Date Joined Mar 2009
Total Posts : 13
   Posted 7/22/2009 5:53 AM (GMT -7)   
You are very welcome. I am glad these info help. Please look after yourself and stay positive. There really is a lot of us about, some better, some much worse but we are all here for each other. These forums were a god send for me in the past year, as my social life was also minimal. Trying to balance work and this illness is not easy. I am going part time next year, hopefully it will get better. Take care. tongue :-)

isuckatcheckers
New Member


Date Joined Jul 2009
Total Posts : 9
   Posted 7/28/2009 10:56 AM (GMT -7)   
Dear Cordelia-Mary,
There are lots of us suffering from strange conditions that get lumped under misnomers like "CFS, CFIDS, ME/CFS, ME, etc." Here in the US, the CDC still uses the frustrating moniker "CFS" while a push has been made by advocacy groups to start referring to it as "ME/CFS" to make the label more comparable to what's used overseas.

Regardless of the name, it SUCKS!! I've become increasingly convinced over the years that most cases have an immune basis. Many ME/CFS patients test positive for active infections with herpes viruses, particularly Epstein-Barr and HHV-6, but probably others. What's unknown is whether these infections come first or are acquired/reactivated with ease because the immune system is weak with other infections.

The best case scenario is to have a doctor willing to work with you to assess whether you have any ongoing, detectable infections like Epstein-Barr, Lyme, and so on. Unfortunately, at least here in the States, the vast majority of our MDs are entirely clueless, dismissive, condescending, rude and generally make patients feel even crazier than they already do!

If you don't have a good doctor over there, there are now at least half a dozen very impressive options for improving your immune system health, which will help your body fight any infections you might have. You have been sick for decades. It would only take about 6 months to figure out if you benefit from getting your immune system stronger. I would look into the following products in order:

-- Lauricidin - Developed by a researcher at Michigan State University. This is a concentrated form of lauric acid, the antimicrobial agent found in coconut milk. A quick Google search will reveal all of the things lauric acid is known to kill. The important thing is that it is good against a wide range of viruses, bacteria and even yeast, all of which can cause symptoms like yours.

-- Samento or other products made from the herb cat's claw. Broad spectrum antimicrobial that just works. Would go with Lauricidin first, myself.

-- Transfer factors - Immune messengers extracted from cow colostrum (first milk after giving birth) and chicken eggs. Lots of published research on the benefits of transfer factors for strengthening the immune system and fighting infections. I actually published a book on transfer factors a few years ago, with the second edition coming out a few months ago. I would add this only after several months on something like Lauricidin. Turning up immune activity can lead to some serious discomfort for a few weeks if you really do have active infections. Once your immune system is healthier, transfer factors are brilliant for keeping it healthy.

Not to ramble on too much, but I really do think it's worth trying six months of something like Lauricidin and seeing if your symptoms improve. If not, then that lessons the chances that you're are dealing with infections of some kind and/or a weakened immune system.

Hope this helps! Please keep writing so that we can keep giving you support!
Best wishes,
Aaron

Post Edited (isuckatcheckers) : 7/28/2009 12:00:06 PM (GMT-6)

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