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