Do you feel that you're going insane? Must be Lyme Disease?

That is a horrible list of symptoms and very similar to mine. I was 'lucky' in that I persuaded - or begged might be more accurate - my GP to give me a blood test after numerous visits with all those symptoms (and even then only because I'd done some research online and wondered if it was lyme disease), and lo and behold I was diagnosed with acute lyme three months after the bite. I am still very ill two years on from the diagnosis though, and unfortunately you are probably  going to have to fight the NHS every step of the way to get the correct treatment if you are diagnosed with lyme. Hopefully that John Caudwell case will raise consciousness and might make the NHS take notice of all the research being done in the US and Europe. Good luck.

Hi Sheila, this is a long & complicated story so I hope I don't loose you! I too watched This Morning-29th Sept, it rang alarm bells to me. I was bitten 16yrs ago whilst on holiday in Miami. I had the typical Bulls eye rash & was unwell afterwards. I regularly get bitten by anything that can bite me-so I really didn't think anything of it & wasn't even aware of Lymes. The rash got much worse. When I returned home I went to my GP and they prescribed antibiotics for the rash, not for Lymes, no one even asked me about that, even though I had been to America!

However, some 7yrs later I was diagnosed with Fibromyalgia. This was around 9yrs ago after a huge amount of appointments with numerous symptoms similar to yours. The diagnosis was a relief however no one ever mentioned Lyme disease when checking out what could be wrong. We even had to go privately for a diagnosis as the NHS did not take me seriously. 

About a month ago my husband sent me a link regarding the symptoms which some people develop when they have a mirena coil, (which I've had in place for the past 9yrs, 5 then 4) a lot of them I have!! These are also similar to Fibromyalgic symptoms. I decided to get the coil removed(2 wks ago) so that I could rule this out. Thinking about it, a lot of the symptoms which led to me having to stop taking the pill & get the coil are similar to that of yours & Lymes, & the dates tie in!

Then I watched the This Morning programme. I immediately called my GP for an appointment which was yesterday. I explained the whole story & he replied by saying that even though I may have Lymes disease the NHS service in my area (Aberdeen) only test for Lymes up to 6wks after a bite. I asked him what I should do, he initially said I would probably have to go private(not an option anymore) and after me pushing him said he would look into it!! So, I'm waiting. I really don't know if my symptoms are Lymes related, coil related or is indeed Fibromyalgia but I would really like to know once and for all. I am going to be 45 in November & really want to feel better. 

Thanks for listening. X

Dear Sheila,

I share your concerns. I have been so ill for the last 15 years with many of the same symptoms. At times I have felt as if I must be dying. My NHS GP told me I was using his emergency Saturday clinic "inappropropriately" when I went to him feeling so ill I didn't know what to do with myself. I went to a private GP who was very kind and sympathetic, and said I had ME. He said I just had to be patient. After years I found that some ofmy symptoms were similar to hypothyroidism. I started taking thyroxine. Some of the symptoms, such as persistent nausea, went away, and I had more strength. I was still ill, and only after taking ciproflaxine for a bout of bronchitis, did I suddenly find myself feeling more normal. I still feel weak and exhausted, which I suppose is to be expected. I too have three dogs, which I used to walk on the south downs in Sussex. Now I have to persuade my GP to give me more antibiotics and hope they deal with whatever infection I have. I hope this helps you.

Hi u sound like me when I read your words I was bitten in June did not see a tick but had red lump on my arm I'm a gardener so am outside all the time about a month later had pain in abs went to docs had scan on liver and spleen all ok took bloods all ok been back to docs every 2 weeks in the last 3 months more blood tests all clear just say it's some sort of virus it was not until someone said to me about Lyme and I started reading about it that I said to my wife that's me always feel ill pains in abs arms legs back, pain in eyes with blurred vision  dizziness but the docs just don't put 2&2 together going back this week to ask for a test not hopefull of getting the test or even if I do it will prob come back as a no I no how u feel I feel bad again this weekend dig in keep going and one day we can all get though this thing that nobody understands unless thay have it 

Hello Sheila

So sorry to read about your difficult journey...unfortunately the blood tests can be unreliable, so your doctor really needs to treat you on the symptoms...and you sound like a classic chronic Lyme sufferer. The problem is finding a doctor who is willing to treat on that basis or actually knowing anything about the disease! I started my journey in February this year (I got bit and had 2 EM rashes several years ago...my symptoms got worse and after doing some research myself, realised what was wrong with me....my doctor wanted me to get a psych evaluation when I insisted it was Lyme)!

But the key to getting the treatment is to keep on at them...it's your body and you know if its in your head or real...and sometimes you have to remind them this. I kept back pertinent information too as I thought it would make me look like a hypocondriac, but the hard part is being open and honest however loopy it sounds...as all these peculiar symptoms to point in that direction. Everybody suffers at different degrees, so there is not text book foramt to how you are dealing or suffering with it either.

I had 2 serology tests within a week of each other, and one showed a very high antibody reading to Borellia, then the following week it was much lower. My doctor dismissed the idea based on that...and so I had to get serious and wrote to him, asking why I had the antibodies in the first place. I also sent him copies of all the research I had done on the disease, with a statement arguement as to why I thought I needed treatment. In the end, because I wrote to him, I was sent to see a specialist, who threw a few weeks of antibiotics at me to shut me up. 

Eventually I went to see Dr C at Winchester travel clinic and for the first time, I was taken seriously and am now on a 6 month regime of two types of antibiotics. Had I listened to my doctor to start with, I wouldn't have got this far.

So go with your gut and keep shouting at them until they do something about it....it is your right to be healthy, your body...make them listen.

Good Luck and I hope you get the treatment you deserve.

PS as mentioned by others here, join the facebook group...they are very helpful and give lots of support

Sheila your situation has been horrendous. I had a suspected heart attack in Apr which they couldn't confirm, had severe chest pains rigjt thru to my back. Most of this disappeared for a bit but my chest issues came and went. I now have a high pitched noise 24/7 in my head, dizziness, hot flushes, neck stiffness, headaches, dull looking eyes, anxiety and memory loss. I was tested neg on NHS but then sent my bloods to Germany and they came back chronic Lymes. Dr is callimg infectious diseases unit this week and will let me know what treatment if any ???? I'm not hopeful but a friend in this area told me there is medication for it and i should be given it immediately and not to be fobbed off. Lets hope eh !

Sheila did you find out if it was Lymes disease..I have most all.of your symptoms and they can't seem to find out what's going on with me..Haven't been tested for Lyme as of yet.. I will not let these Doctors tell me Nothing is wrong...my body tells me otherwise