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

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I watched the programme, (This Morning) on 29th September with John Caudwell (Billionaire) highlighting awareness of Lyme disease in the UK – most of what he was talking about sounds very similar to what I have been experiencing over the last 2 years or so. I feel like I have been a nuisence to my GP and get looked at with suspicion like i'm pretending to be ill!

I saw a poster recently that quotes "I'm not pretending to be ill, you are mistaken because i'm pretending to be well". So ept.

After two years of going back and forth to GP with all sorts of symptoms, I got a blood test today to test for lyme disese -all thanks to John Caudwell's interview on This Morning programme.  I kept a lot of symptoms back from my GP because even I thought I was going insane, my list of symptoms are endless and are as follows:-

Headaches at the base of the skull

Headaches at temples

Eye pain feels strained

- Watery eyes

Tinitis

Inflamed internal nostrils

- Neck stiffness and pain

- Severe shoulder pains with immobility

- Upper arm pains and weakness

Elbow pains

Wrist pains and weakness

Inflamed hands – get very hot

Numbness of hands

Finger joint pains

Back pains between should blades with burning sensation.

Chest pains consistent with lungs not heart.

- Breathing difficulties

- Abdominal Pains with sickness and diarrhoea

Right pelvic/hip pain with electric type shock radiating down leg

Knee pain with stiffness

Calf pains

Shin pains

Ankle pains with stiffness

Top of foot pain

Side of foot pain either side

Under foot pains feels like no natural cushioning under the foot

- Stress

- Anxiety

- Depression

Frustration

Irritability

Forgetfulness

Confusion

Insomnia

- Strong Nausea 

- Vomiting

- Diarrhoea

- Fatigue

Exhaustion

Muscle weakness with no muscle tone at all

- Flu-like symptoms

Tenderness to the touch of skin

Rashes 

- Loss of Appetite

and probably missed a few - but, by god I have never before since 2 maybe 3 years felt so ill.

The ones marked with a hyphen's are the only one's I highlighted to GP - I believed that I had an autoimmune disorder but bloods keep coming back negative which is why I was looked at with suspicion.  Test have not come back obviously, for lyme's that should be next Wednesday! - Don't get me wrong I would rather have nothing wrong with me but, excuse the pun, I have been dying for diagnosis for so long, I have been in agony in not only in body but mind as well and just need answer's now. At times i thought i was dying many times over - I would not wish this on anyone.

I am expecting a negative result though from the research i have been reading, seems realtively normal depending on how long you have had the disease,  

We live in SE England and have three dogs, I remember the days when I used to take them for a lovely walk through the local woodlands - I so miss those walks.  There has been a few ocassions i the past that they have had a tick and so we use a well known dog repellent to get rid - but i'm wondering if the tick just decides to get off dog and onto human when using repellent, because I do not remember a tick on me but I do remember a bulls eye rash - but because I suffer with eczema and discoid lupus I didn't at the time (3 years ago) didn't go to GP - I had never heard about lyme back then - I certainly have now!

Going through NHS has been horrendous because you look ok on the outside soI  have been treated as mental illness isssues and i know from what i have read it can cause mental illness not surprisingly! I would love to hear from anyone else who experienced the same.

Good luck to all dealing with this tortourous disease. 

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9 Replies

  • Posted

    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.
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    • Posted

      I'm sorry to hear you are still unwell two years on - lets hope John Caudwell's influence can change things for us and future suffer's  

      I know the battle has just begun as if illness is not bad enough! you have to fight bureaucratic ignorance too. It seems people like us have to diagnose ourselves and GP's don't like it. I think they believe people like me are hypochondriacs and fail to realise we have to look up our symptoms otherwise we end going around and round in circles being treated for different type of symptoms.  I have had ultra sound scan came back normal, colonoscopy came back normal even though sikness & diarrhoea is one of my worst symptoms I have no appetite i'm wasting away.  I used to love my food but now I have to remind myself to eat. The problem is the 10 min slots you have with GP's isn't enough to get yourselve heard and for them to see a pattern of illness.  Also the inconsistency of not seeing same GP each time.  I have come away from GP surg in tears many a time. You'd think it simple that you feel really ill you go to GP they find out what is wrong and then you get treatment and you get better to carry on with your life, if only!! I know we can't blame GP's when there has not been awareness of this disease in this country - like you say lets hope John Caudwell can lobby NHS and Government and force more research and better teatment.

      All the best to you too. 

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    • Posted

      I have been ill for many years with ME/Fibro, and have often wondered if it`s Lyme, but I have been told even if it is...it`s too late for treatment...antibiotics have to be given in first week I think....it`s disgusting that there has never been correct testing all these years.....many people have been misdiagnosed.....thank goodness for people like this millionaire....I agree with what he has said on TV and in the papers today, it can`t possibly be just from being bitten from a tick, hopefully his research will prove this...and lead to treatment....Good luck with your health...
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  • Posted

    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

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  • Posted

    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.

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  • Posted

    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 
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  • Posted

    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

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  • Posted

    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 !
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  • Posted

    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
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