Please read....

[Sg1474]

8 years ago i was diagnosed with rhuematoid arthritis then when referred to consultant they medicated me with methotraxate which just made me more poorly and then diagnosed with fybromyalgia instead. Every sympton i have had in the last 8 years has been put down to fybromyalgia and arthritis. I was browsing internet last weekend and came across a piece about fibromyalgia and lyme disease and the likeness in the illnesses are huge. In some cases people develop a bullseye rash, which i had 8 years ago and the walk in centre i went to didnt know what it was and it disappeared. As i was pregnant at the time the following months of sickness and not being able to use my legs properly were put down to me being pregnant but even when i had my baby the symptons just got worse, the neck pain, pain in my jaw and ear, the tinnitus that started the on off arthritis and i have developed lots of food intolerances and ibs. The confusion and disorientation has being labelled fibro fog, i cant have proper conversations anymore as sometimes i dont even finish my words outloud. The more research i have done this week i now know i have Lyme Disease, called chronic now as its been left so long and often mis diagnosed as fibromyalgia. The Lyme disease causes all my symptons named above and many more i havent mentioned. I went to doc and she is finding out how to get the special blood test and what to do now.

70% of Lyme disease cases dont have the bullseye rash which is why it gets missed alot, i never remember a tick bite but used to take the kids to bushy park (full of deer) and picnic. My doctor has taken my findings seriously and is helping me, i just wanted to share my experience as it may help somebody else diagnosed with fibromyalgia wrongly.

I will update with any further information and test results.

Much love

Sarah

[Mandypandy1969]

I have always had bad reactions to insect bites. I always got eaten alive by mosquitoes abroad. I got bitten last year by a spider I think. It flared like a mosquito bite, maybe it was a mosquito, I don't know, I am finding I feel weaker and weaker, my speech getting slower and mumbling more than talking properly. Fibromyalgia and sjogrens I suppose. I have severe tinnitus amongst other stuff aswell. Grind my teeth. List too long. A friend of mine suggested I got tested last year but I didn't bother. Go g.p.s enough. X

[Sg1474 in reply to Mandypandy1969]

Thank you for replying, totally understand you not wanting to keep going back to docs, we probably feel similar on that, I feel I'm always there. I came off all my meds last September as I couldn't go on with how it all affected my muddled head was sick of just trying new drugs, so live in pain now but couldn't let this go when I read and researched Lyme disease, maybe worth seeing what your doc says. X

[Mandypandy1969 in reply to Sg1474]

Ok

Maybe I should mention it.

X

[Mandypandy1969 in reply to Sg1474]

I always have had allergic reactions to insect bites. Always used to be out in the countryside in hot weather in shorts. X

[Sg1474 in reply to Mandypandy1969]

it is definitely worth mentioning, i also suffer with the speech and find i cant finish sentences and my last words dont come out properly and i feel like an idiot or a bit drunk sometimes. I say alot in my head but seems to much trouble to even talk to people most of the time. The weakness in my legs and hips is really getting me down, i want to enjoy the summer holidays with my little girl as luckily i work in a school too so get brill time off, but i know i wont be able to go to far as pain gets too much. Im going to see what happens with the blood test and take it from there

and even though its hard to treat this far on there are still courses of anitbiotics that can be tried, a glimmer of hope i must grab, if you can try researching a bit on Lyme Disease and Chronic Lyme Disease and see if you have any of the other symptons and there are alot of different ones.

Please let me know how you go it will be very interesting, good luck and take care.

Sarah x

[Mandypandy1969 in reply to Sg1474]

Ok Sarah. I will post something if I get an appointment tomorrow. Our surgery is a joke at the moment. Phone call appointment, ridiculous. Xx

[Sg1474 in reply to Mandypandy1969]

Great, good luck and try and take at look at the website LeighBlyth (below) has mentioned, it has a few interesting blogs on about it. xxxxx

[Sg1474 in reply to Mandypandy1969]

Hi, just wanted to update you, I have been recieving Biomagnectic Pair Therapy and it’s amazing, creates a PH balance in your body that the Lyme and other coinfections can not live in. Feel abit rough after first two sessions but am amazed by the results I can already feel. My ear/jaw pain just feels like a small pulse in my ear now, I have only had two sessions, the swellings on my feet and hands have gone down loads as person I am seeing said it was gouty arthritis and is getting rid of that too. It’s a bit surreal after 8 years, just wanted to let you know. Hope you well. X sarah

[LeighBlyth]

I came across a blog called februarystars which may be of interest to you.

I'm glad to hear you've found a doctor who's taking you seriously. Good luck!

[Sg1474 in reply to LeighBlyth]

Thank you, I will take a look at that today. X

[Sg1474 in reply to Sg1474]

wow, thank you, brilliant website and explains much better than i have the struggle to prove its Lyme Disease, especially the longer its your body as alot of blood test come back negative.Thanks again. xx

[Hidden]

Hi,that's very interesting I myself also noticed a bullseye bite many years ago which then spread over my entire body and had me unwell for many months this was also about 9 years ago,I was under alot of investigations at the time and they had no idea what it was but I am now wondering if anybody tested for lyme disease thank you for that I will be doing some investigation at my gp this week 💕

[Sg1474 in reply to Hidden]

After the research this week, mis diagnosis is high is Lyme disease and harder when it's developed into chronic Lyme disease and different doctors believe in different methods of antibiotics to try and kill the disease. Same as fibro I think with different docs but most definitely worth looking into, once I told the doc about the bulls eye rash and then the list of ailments I can list since then she believed I have a serious case, just a real shame that 8 years ago the hospital walk in centre didn't have a clue what that rash was and tested properly, it seems a lot more research has been done and a lot more docs now know about it. Good luck at docs, please let us know how you get on.xx

[Sg1474 in reply to Sg1474]

i really recommend looking at the website LeighBlyth (above suggests) and look at the blog called Diagnosing Lyme Disease Why it can be challenging, really worth the read and explains much better than me. xxx

[Jardines]

Hi Sarah!

I was tested for lyme disease before i was diagnosed with fibromyalgia which i requested as the symptoms are so alike and i had been bitten so yes you should ask for it. I had the tests done at my doctors surgery. For me it was negative and after many more tests to rule out other things i was diagnosed with fibro. Good luck

[Sg1474 in reply to Jardines]

Hi Jardines,

Thanks for letting me know, i have read quite a few pieces this week on peoples test coming back negative and depending on where you live in the world depends on how patients are treated, apparently its called The Lyme Wars between different doctors as some will offer an extensive course of anti biotics even with a negative result and some doctors will just diagnose fibromyalgia. All very confusing to us mere mortals living with all these ailments.

Take Care

Sarah x

[Jardines in reply to Sg1474]

Its crazy! I know when i asked to be tested they were reluctant but i had to rule it out but to be honest if tests are coming back negative, who knows!!

Best of luck x

[Sg1474 in reply to Jardines]

I recommend a look at the website LeighBlyth suggests (above) and the blog Diagnosing Lyme Disease and Why its so hard, as alot of results come back negative, just thought it would be worth a look. xx

[rosewine]

Such a shame that this wasn't diagnosed at the time. We were lucky with my husband as we were on holiday in Devon and a tick got attached and its head was still in his leg. I took him to a Walk In Centre at the local hospital who were brilliant. They took the head out and gave him details about Lymes Disease and what to look out for. I do hope that they can do something for you and yes do let us know how you get on.x

[Sg1474 in reply to rosewine]

Hello Rosewine, Yes it is a shame but thank goodness i have discovered it now and there is glimmer of hope of anti biotics helping, i do understand from lots of what i have read this week that alot of people who are left so long are still left with alot of their ailments even after treatment but got to be worth a try. Thank goodness your husband was given the information and is okay. Thank you for your kind words and i will keep you all updated.

Take care Sarah x

[stiltzski]

My daughter-in-law is in exactly the same position as you. At last Lyme Disease is being recognised and warning signs put up in some parks, but treatment for chronic Lyme is not straightforward. I really feel for you and am glad that you have a sympathetic GP. Lyme Disease UK is a very good resource, if you have not already found it. Wishing you the best of luck getting well again. Lyme Disease mimics many other diseases and I expect many of us on this forum may have it undiagnosed. I understand that Germany offers a full-proof test (you can send a sample of your blood by post) but I am not sure if one is yet available in the UK.

[Sg1474 in reply to stiltzski]

Sorry to hear your daughter in law is suffering too, mind boggling how so so many people have this and are left for years suffering with similar ailments and not many docs have joined the dots. Europe does seem to be leading in its treatment for Lyme Disease, i read a fab blog from a young guy from America who has suffered for years with Lyme and when finally diagnosed went on massive course of anti biotics and then went for stem cell therapy and the results are life changing for him, the anti biotics dealt with the infection while the stem cells gave back the use of his body, it was done over a long period but his life has changed dramatically for the good since then. Shame we dont offer this full tests and treatment here.

[stiltzski in reply to Sg1474]

That is good news. My daughter-in-law went to Germany for expensive stem cell treatment, but it did not work and the clinic has since been publicly discredited. It makes me angry that there people out there exploiting vulnerable Lyme sufferers who are desperate for effective treatment.

[Glosgran]

I've just started taking LDN (Low Dose Naltrexone) for Fibromyalgia, autoimmune thyroiditis (Hashimitos) and autoimmune support. It works to modulate the immune system and a number of people in the LDN Facebook support group are using it to treat Lyme Disease. treatlyme.net/guide/low-dos...

[momof15 in reply to Glosgran]

What symptoms do you have daily? Just VERY CURIOUS if it might work for me! Many Thanks to You!!

[momof15 in reply to momof15]

Failed to mention after having 11 children, my body just went wacky!! I have been diagnosed with Lupus, Fibromyalgia, Hashimitos, pernicious Anemia and psoriactic arthritis up and down my spine and in every joint! Leaky heart valves with arrhythmia...asthma....liver and kidney problems too. .ect....I honestly feel like I'm dying a little everyday. I'm in constant chronic pain all over my body and take 10mg of Percocet every 4 to 6 hours. Sometimes he just puts me on 15mg. I'm at a point of total weakness and breathlessness and pure exhaustion all day everyday. I can not work a job!!! I dont know anything about disability or if I'm even elgible. I can't sit for more than 5 minutes. I can't walk more than 20 feet without gasping for air and wheezing loudly!! At that point, my legs become very heavy and my head spins with total dizziness!! I can't clean house or drive because I see double vision and everything is blurred out. I'm very very weak and need help to stand and I'm off balance when I walk!! I truly feel like I'm dying!!

[Hidden in reply to momof15]

Hi

Sorry that you are feeling so ill, I feel exactly the same as you. I hurt all over, get about an hour's sleep re pain. I have Nash (non alcoholic steatohepititis caused by meds from my drs) IBS, diverticulitis, gastritis, diabetes, costochondritis, under active thyroid, profusely perspiring caused by all my conditions I'm on tablets for it, oa in knees, sometimes I get double vision, I'm the same with sitting, standing and walking, get very dizzy and head spins,, my legs do get heavy, lower back and hips are very painful, sciatica for which I've been referred to orthopaedics, had MRI on Friday, results on the 10th -, done in just less than 2 week which is great. I had to finish work on ill health retirement last year, my boss was and still is fantastic, she had tried everything for me to be able to work but in the she had to suggest ill health retirement, I didn't want to but realized she was right. Hope you get some relief from your pain soon. I'm always here for you.

Love and hugs Lynne xxxx

[Sg1474]

Thank you, i will definitely take a look.

[momof15]

Hopeful!! Ironically, the "ONLY TIME" I FEEL BETTER IS WHEN I'M ON ANTIBIOTIC!S!! ALSO, I TRIED THE METHOTREXATE. FOR MY LUPUS AND HAD SEVERE STOMACH PAIN FOR ONE WHOLE WEEK! NONSTOP AROUND THE CLOCK! IT WAS BBBAAADDD! WHAT'S THE HARM IN TREATING LYMYE ANYWAY!! IT'S CHEAPER THAN ALL THE TEST RIGHT???

[Hidden in reply to momof15]

Hi

What are your symptoms for lupus? Love and hugs Lynne xxxx

[Hidden]

I remember being tested for that, actually had so many blood tests. But I do think it's an illness that can be misdiagnosed or not treated at all in some cases as Drs don't usually test.

[Sg1474 in reply to Hidden]

yes you are so right, people coming back with a negative result are usually given a different diagnosis. After alot of research it seems some docs dont think Lyme can exist without a positive result but in fact a huge huge number dont test positive and then diagnosed with fibromyalgia. The more research i do and read about peoples symptons i now know i have Lyme Disesase and not fibro. We need to find a doctor who will take that leap of faith and start treatment, they were quick enough to put me on Methotraxate when they first thought i had rheumatoid arthritis and it made me so much more poorly and such a strong drug, why not try treatment for Lyme? I shall wait and see what happens when doc gets back to me. xxxx