I would like to thank patient.info for putting up such ...

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I would like to thank patient.info for putting up such excellent infomation about Lyme disease and much of it is CORRECT!

I was bitten by a tick in Kent, England in 2002. I was only 14 years old and didn't know what it was at the time and tried to pull it out using my fingers, but it wouldn't come out. My parents tried with tweezers but it still wouldn't detach, it was stuck.

We phoned NHS direct as it was about 9pm at night and we were told "not to worry, keep it in overnight and remove it the next day".

We didn't know ticks could carry such devasting diseases so did what was recommended.

We had it removed at the doctors the next day (incorrectly). I was not given any antibiotics and they didn't even clean the bite.

The bite was very red and quite sore and swollen.

I then started to get light sensivity and didn't feel myself at school, but put this down to stress as I was studying hard.

A year later I basically collpased. I was incredibly tired all the time, extreme light sensivity, pains all over, chest pains, eyes were shaking, couldn't concentrate - I thought I was dying.

I went to my G.P who took normal blood tests which all came back normal, I was then referred to a paediatrician who basically took 15 minutes to diagnosed me with CFS/M.E. I couldn't understand at the time why more investigations and tests were not done.

I got worse and kept getting worse untill I was unable to go out at all and was often confined to my bed.

In 2004 I read in an M.E/CFS book that Lyme disease has similar symptoms so I immediately requested a test, and ofcourse it was negative.

I forgot about Lyme disease and thought I must had M.E/CFS, but it seemed a bit of a coincidence that I fell ill after a tick bite and my symptoms matched Lyme disease perfectly.

Then, at the beginning of 2006 I was in a U.S support group and a M.E/CFS sufferer said she had tested positive for Lyme disease after being diagnosed with M.E/CFS for 12 years. She told me the tests are incredibly unreliable and are plauged with false negatives.

I later found out the test I had done was the ELISA test, which is the least reliable and has many false negatives.

I found a specialist who diagnosed me with Lyme disease and sent off tests abroad to confirm (he never uses the Southampton HPA lab as it is incredibly bad and doesn't even tell you which bands were positive), infact, none of the Lyme specialists in this country use the Southampton lab, they all use the labs abroad).

They came back positive.

I started Oxytetracycline 3 months ago and the first 6-8 weeks were rough, but I have had some of the best days since becomming ill, but I have been having many Herx reactions which set me back. I am having a herx right now.

My symptoms are severe fatigue, weakness, blurry, double vision, eye floaters, glare and halo's around lights, dry eyes, poor night vision, head aches, eye aches, tinnitus, dizziness/vertigo, anxiety and panic attacks, confusion, chest pains, back pains, neck pains, back and neck stiffness, joint pains in fingers, toes, knee's and elbows, low body temperature, muscle spasm's and twitches.

It has devasted not only my life, but my entire family who have had to put their life on hold to care for me. I wanted to become a doctor, but my education has been ruined and I realise the recovery will be slow and hard.

I wish doctors were more aware of this devastating disease and just how serious it is. They don't realise the tests are unacceptable, especially in LATE disease. They don't realise that the later stages on Lyme disease can have pretty much any symptoms, very similar to M.E/CFS, M.S, Lupus, ALS, Parkinsons, and many more and they don't realise that Lyme disease needs AGRESSIVE treatment, sometimes years with multiple antibiotics able to kill all the different forms of the bacteria.

Thank you again for putting some of the correct info on your website. The Health Protection Agency has a very biased view and I have the feeling they don't even believe in late-stage Lyme disease and they are not bothered that their tests are missing thousands of cases per year.

I do think you should state on your website how unreliable the tests are for Lyme disease and the rash is often not present.

Many thanks,

Chris.

[i:a0e55e063b]This message was automatically imported from the original Patient Experience[/i:a0e55e063b]

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8 Replies

  • Posted

    I have been experiencing lots of LYME symptoms the worst arthritic type pain in neck / shoulders/chest/ribs. This has been going on for three years. have scan blood tests including LYME test by G.P. it came back negative. I had to demand a test as doctor may as well have laughed at my suggestion of LYME. I was bitten by tick previous to all this pain ertc; I would be very interested to know which specialist to consult about LYME. Any help would be greatly appeciated.
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  • Posted

    I caught Lyme in 2000 via a tick bite in the Lake District. I was actually positive for Lyme on the Elisa. I was prescribed a very short (10-day) oral antibiotic protocol. A year later I fell ill with fatigue, migraine, general malaise and low stamina. I have been very ill since then and am unable to work. Is this related to the Lyme? I don't know. It's possible I was given poor treatment when I was diagnosed with Lyme. This is the opinion of some of whom I have consulted, though not that of any NHS people to whom I've spoken. NHS people either say they don't know or that I do not have chronic Lyme but have CFS/ME. I don't know who is right, but I think the Lyme advocates have the edge.

    ****

    Best of luck to you.

    [color=green:0f57aa8e8a][size=9:0f57aa8e8a][i:0f57aa8e8a][b:0f57aa8e8a](Sorry but Patient Admin have removed either a Consultants name, a Doctors name and or a Hospital / s name / s from this posting as it is the policy of Patient UK not to publish these on this forum.)[/b:0f57aa8e8a] [/i:0f57aa8e8a][/size:0f57aa8e8a][/color:0f57aa8e8a]

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  • Posted

    Could the original poster, C Guest, please contact me at ***** My 17 month old daughter was bitten by a tick and I'd like to know the contact details for the labs abroad.

    [color=orange:2626a5dbc3](Sorry but Patient Admin have removed either a telephone number, an email address, and or web address, from this posting, as it is the policy of Patient UK not to publish these on this forum.

    If you wish to communicate directly with people, you should register, for free, with the forum (click Register in the menu list below the green banner above). You and other registered members will then be able to communicate with each other via Private Messaging (PM) or e-mail.) [/color:2626a5dbc3]

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  • Posted

    Generaly speakng I have found that gentle yoga stretches help with all forms of back and joint pain. It loosens tense muscles and increases strength which takes the strain off of the back and joints.

    Best of luck

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  • Posted

    Hi Chris,

    I don't even know if you will still be on this site. I too am in Kent and I was wondering if you could let me know the specialist you saw as I am struggling to find one.

    Kind Regards

    L

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  • Posted

    Dear Chris,

    I could have wept when reading your post, and I hope that by now you are feeling much better.  I have no medical training whatsoever,but the first thought that crossed my mind when you mentioned the tick was Lyme Disease (for which I have also been tested although I do not have Lyme.)

    There are groups on Facebook etc where sufferers of Lyme can share their stories, and there are also websites

    Too many doctors do not listen to their patients, treat them with contempt, and over diagnose things like ME/CFS, Fibromyalgia, anxiety and depression because they don't have a clue what's wrong.

    I share many of your symptoms, especially the visual problems and dizziness and feel, quite frankly hardly able to get out of the house anymore, which is difficult as I live alone  I am in my 50's so this is really hard for me but, after seven years without a diagnosis for my problems, I have recently discovered that I have intercranial hypotension and a possible CSF leak.  The only reason they found this is that I paid to see a neurosurgeon privately and he put all my symptoms together and came up with a different type of test to check my ICP.  My GP's were desperate for me to a psychiatrist because nothing had been found previously.  I am now waiting to go back into hospital for more tests.

    Thank goodness for sites like patient.info which I have also used in an attempt to diagnose myself.  There are some great doctors out there, but also some who should not be practising, and some GP's do not, or perhaps do not have the time, to really consider their patients' symptoms and try to help, and just dish out more medications to keep them away from the surgery.

    I wish you all the very best in fighting this crippling disease and wish a full recovery for you.

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  • Posted

    Hi

     i dont know if any of you are still connected with this post but hoping that someone maybe able to help me.

    I was diagnosed with Fibromyalgia 18 years ago but 24 months before my diagnosis  i was bitten by something and was told it was an allergic reaction to the bite but only now some one has suggested it could have been lymes and all the symptoms etc fit into place.

     I have been having issues on and off since and my latest flare up has resulted in not being able to eat much or use any "chemicals on my skin etc.  Not all my symptoms add up to the Fibro but they do connect with Lymes.

     I am getting to a desperate point as have now been on sick leave for  2 months but have not been getting any better regardless of what i try. i have paid to see an allergist  (apparently the allergies i had previously have disappeared and there is nothing wrong with me ) and two GP's have told me that it is all in my head.  I have done a lot of research and was wondering if anyone can tell me is there any Lyme literate doctors in the UK , preferably associated with the NHS? I have found a GP in Herstmonceux who will only do the tests privatley but have been told that this can cost over £1000 and unfortunatly i do not have that sort of cash..... any help would be greatly received

    thank you and best wishes 

    Pen

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  • Posted

    Hi Chris, thank you for sharing this. I too am very ill for over 2 years now and suspect Lymes. I have lived in Kent for past 7 years, prior to that spent more than half my life in CT, USA, the birthplace of Lymes. Can you advise if a specialist who will send blood for testing to USA or Germany please? As I really need help and no GP had helped me. Thank you in advance.
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