Fibromyalgia Action UK
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Is this being misunderstood?

Please accept my sincerest apologies for posting this here. I'm urging everyone to read this, and share it with whoever you know that may be affected by it (or, even if they're not, these words need to be heard and understood). So please, read on:

I won't go into much detail about my own past, as this affects everybody. However, to cut a long story short my diagnosis of Multiple Sclerosis might actually be Lyme Disease. I've made a lot of excellent friends in MS groups and have spoken to a lot of good people. The idea of having Multiple Sclerosis is a scary concept, but there are people all over the world who offer support and advice.

Lyme Disease, as you may or may not know, is a tick-bourne infection that is present in a lot of countries including the UK, USA and others. Awareness of it is still quite limited but it's affecting a lot of people everywhere. I guess the biggest point I'm trying to make here is just exactly what Lyme disease can mimic. The problem that is going on a lot right now is properly diagnosing Lyme Disease (also known as the Great Imitator) is difficult as the tests in place are not 100% successful and can result in false positives and negatives. This can, in turn, result in a diagnosis of a mimic such as Lupus, MS, ALS, RA, and others and possibly incorrect treatment. I've seen a LOT of stories where the original diagnosis of Lupus, after further testing, was actually Lyme which is a perfectly curable disease if caught early. I know the US has a higher success rate of diagnosing Lyme, but there is still a lot of improvement to be made, and governments are still in a lot of disagreement about the right course of treatment for this.

To those who are affected by Multiple Sclerosis, Lupus, Chronic Fatigue Syndrome, Fibromyalgia, Alzheimers, Parkinsons, Guillian-Barré syndrome, Ménière’s syndrome, , Arthritis (rheumatoid, reactive, infectious, juvenile, or osteoarthritis), Amyotrophic Lateral Sclerosis (Lou Gehrigs Disease) - I'm begging you to look this up and investigate. A full list of symptoms and more information can be found by visiting [Edited by Admin] [Link removed as per guidelines] For more information on Lyme Disease please visit

The typical bull's eye rash is only seen in 50% of people affected by Lymes - and may not show immediately after the bite (it can take 3-30 days for the rash to show after the bite, and averages around 7 days). You may not even notice a tick biting you due to the chemicals released at the time of biting. Awareness needs to be raised all over the world so that the true number of Lyme cases can be seen, heard and understood. Lyme is curable, but people are still suffering and dying because of poor diagnosis and delayed treatment all over the world. Children are being born with it and lives are being ruined unnecessarily - it breaks my heart when I see a young face that is living with a life of Lyme Disease that the mother or father didn't even know they could possibly pass on. Please do a good thing today - read and share this status. There is so much information available on the internet about this including the main Lyme Disease Wikipedia article. Thank you for reading one desperate person's attempt to improve things for the future xx

P.S I am not in any way taking away the importance of MS and curing MS - I am merely one person trying to make a difference . Steroids and DmDs can also do a lot of damage if there is Lyme present - another reason I'm posting this. If anyone is part of a group belonging to the above-mentioned disorders and illnesses, please share this status there too. This disease isn't getting enough action taken here - children are being born with it. it's tearing families apart and people are dying unnecessarily. I'm only one person, but there are so many that are living and dying with this. I am also NOT affiliated in any way with Envita, and is merely just chose their website as it summarises the crossover between the conditions well.

8 Replies

This idea is an echo of what I shared on the RLS group..Lymes disease tests

over the in USA are just as unreliable. I have a friend that is experiencing the

symptoms of Lymes disease..but not a single doctor thought about it so I put

a bug in her ear..I live the the north woods area of Wisconsin, USA..Every family

member in each household helps to check each other for ticks after outtings..

the ticks are in the trees, on the grass and people sitting in the shade have

found the ticks suddenly on their shoulder...I say ticks because there is usually

more than one..they travel into the house on our pets fur..animals also get Lymes fact, we have to look there more often than our own bodies..Over here,

we are all aware that the ticks that are dangerous are the "deer ticks" they show

up as barely a spot on the body, scalp...they burrow into the skin with their heads

and you cannot pull them out or you will break the head off and will continue to

"bite" for as long as it remains..we have to take hot matches to the tick..yep, ouch.

Some people have created drawing salves, oils don't work as well..but anyway,

we check for bugs during the late spring to late is something interesting,

people that can produce any part of the bug to the doctor are automatically put on

the antibiotics..they automatically get sent to the specialist. The problem with not

checking is that it takes the bugs no time to start causing mischief..they are fast

little workers..burrowing in the skin takes minutes, not hours so you have to really

be checking yourself a lot..and always check the kids over very well...The chances

of an infectious bug finding it's way to you is very very small but still, if it happens

to like it did my little brother and you catch it within two weeks, the tetracycline will

be administered and you should be good to go..Suddenly the ticks are showing up

in open fields and in the grass, trees around peoples homes especially as we

build up in the wooded areas..I wouldn't say to panic over it but beware of ticks and

the symptoms of Lyme's been a hunch of mine that many cases get

misdiagnosed and then people are placed on the wrong medicines all the time..


To all members

It is my understanding that the recent advice to remove a tick is NOT to us a naked flame or alcohol.

Please see the link below which provides information how to safely remove a tick;

and further to this information about Lyme Disease itself

Hope this helps



That is excellent ...=)


Thank you very much for this information. I will check it out.

Many blessings


Thanks a lot for your link. Found it very Interesting.


Thank You for the post.

As with all illnesses that mimic Fibromyalgia Lyme Disease should be excluded before a diagnosis of Fibromyalgia is made. Here is some information about the conditions that should be excluded & how Fibromyalgia is diagnosed;

It seems from your story you may have been misdiagnosed and feel passionate about alerting people to this possibility & risk of Lymes Disease which is very important.

I am sure from your post others will be alerted to the risks. They will be able to discuss with their healthcare professional if all possible conditions with similar symptoms have been or are being investigated.

Best Wishes


1 like

Very useful posting, I first became aware of Lyme in the 90's when I was living in the U.S. It is particularly prevalent where deer roam, (New Forest, Exmoor, Wales, Scotland, etc.)

I was a regular camper in the New Forest until recently, and I think I should perhaps get the blood tested for it. Many thanks for reminding me.


Just keep in mind that the tests are not always reliable. Some people in the north woods where I live have nearly died before they started a treatment for Lyme disease..I am so happy that Zeb followed up with what was said..I should say that the remedies that I mentioned are my own remedies. I've gotten ticks at soccer games in wide open fields without there being a

heavily wooded area...the ticks are always on the move or they drop off

animals that go into those areas..I am surrounded by woods so I remove

approximately 40 ticks per season on myself and the dogs..wearing long

pants and having good body coverage works for some...but they do fall

out of trees..they do crawl on the pants and they are small enough that

I can't always see them..Mommies check their little ones at bath time..

Again even where I live, the tick season is heavy, heavy...but I know maybe

5 people that have gotten sick from a tick bite..that is less than 1% of the

population..the odds are that you will not encounter such things. XX Karen


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