Undiagnosed Lyme? Or something else? *warning graphic images!*

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Hi all

I've had symptoms for years of sore joints, sore muscles, spasms & tremors, insomnia, bowel problems/IBS, extreme exhaustion, chest pain & palpitations, low resistance to illness & infection etc. This all seemed to start after a holiday in thailand, with a lot of wandering in jungles & riding elephants. I was fine when I came home but about 10 days later developed 5 awful bites on my legs with fever, vomiting, pain and swollen glands. I was admitted to hospital (tested for malaria which was neg) & was on IV antibiotics for a week as the bites were badly infected. The doctors said that most likey something had burrowed into my skin on holiday & it had become infected. After treatment they healed up, although ever since i've not been right, that was 5 years ago and the past year has been particularly rough, all the symptoms seem to be getting worse.

I want to see my GP about if this could be a tick related illness, but since it's been 5 years now I'm not sure there is much they could do anyway? or would they just laugh at me for suggesting it could all be related? lol

Some pics of the gross nasty bites when I was in hospital

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11 Replies

  • Posted

    First pic looks like lyme rash.

    Symptoms sound like lyme.

    Doubt the nhs will be too helpful though after all this time but worth asking for the test? you might get lucky with the result. You will need long term treatment to manage symptoms and fingers crossed put you in remission. Unfortunately likely have to be done privately. Good luck.

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  • Posted

    Those symptoms are lyme and pretty much match mine. Insist on testing if your other bloods come back clear. Can't have lyme for 5 years? You can have lyme forever if you have never treated it. What is it? self healing? Silly doc!

    Wishing you lots of luck. Keep us updated x

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    • Posted

      Thanks Jo smile I think because of the infection in my legs & hardcover iv antibiotics for it she said that would have killed off the Lyme anyway, which makes sense. Tests came back as calcium deficiency & they are now testing for vitamin D deficiency & celiac xx
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  • Posted

    hi BluebellB. I symapthise, how awful for you. everyone who writes on this forum has nightmare stories of chronic ill health, often undiagnosed and left suffering. I must say the first pic does look a lot like the Lyme/ Borriella rash. If its not Lyme then my hunch is you have been bitten and infected with something else nasty that needs proper treatment.  There is no one treatment protocol that works for every one. There is no fixed dose to get rid of it. The longer you have been ill, the longer it will take to irradicate it ( ive been told this) Treatments have to be given, rotated and changed until eficacy has been reached..My advice would be- can you get to a hospital of tropical medicine to see a specialist??( Southhampton hospital has Lyme literate docs apparently) Could you get to Hemel Hemstead where my specialist is at a private clinic ( google 'Lyme specialist treatment in Hemel Hempstead' or similar to get info.) I was diagnoses with Rhuematoid arthritis, Chroninc fatigue. Have awful pain in joints brain fog, flu-type symptoms,and its still awful etc. AFTER YEARS OF BEING VERY ILL I finally got a positive test for Lyme this January. The UK tests CAME BACK NEGATIVE. Tests done thro' Hemel Clinic are v extensive/ thorough, are sent to the USA - and were very positive.  I am now on a medical protocol of various strong antibiotics, being rotated with anti parasitics and other meds, etc. Nothing has worked so far, but contracted Lyme 12 yrs ago and fell v ill 7 yrs ago. Essential you get tested properly and treated. There is a whole host of powerful and effective treatments out there for you, but first you have to find a specialist to diagnose you properly. I met a lady at my clinic who has finally got better after years. Her husband is still so ill also and they had to move house to be near the clinic. Its very serious and you must insist that you are taken seriously.

    good luck with it all.

    hester3

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  • Posted

    PS. Once Lyme is in your body, it never goes away by itself. Your GP should be able to read readily available info immediately or visit the Lyme uk website. It is a spirocete organisim. If left untreated it becomes 'chronic'. All your symptoms indicate an active infection. It hides itself  by creating a 'Biofilm' goo around itself which in turn makes it difiicult to treat. Please ask your GP to watch the film" Under our skin' the doc about Lyme epidemic. It can be viewed free on U tube these days. V V helpful!

    My doctor also tested me for other infections. I was positive for 3 other active viruses which my body is unable to fight because of the Lyme.

     I want to keep hoping that you, and me, and everyone else gets better soon so that we can get back to living a fulfilling healthy life ( Ive forgotten what thats like)

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    • Posted

      Hi Hester thanks so much for your message & info! Sorry to hear your story you've really been through it sad

      I actually don't live too far from Hemel! So will look into that. My doctor said that because I was treated with iv antibiotics for the infection in my legs, that would have killed the Lyme, which I guess is correct. Still seems weird that my health took a nosedive since then.

      Blood tests showed calcium deficiency & now testing for vit D deficiency & celiac. Doc won't test for Lyme so I will look into the Hemel clinic if things don't improve with treatment.

      Thanks again & all the best to you xx

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    • Posted

      I just had a look at the Hemel clinic, I was just wondering how much did all the tests cost if you don't mind me asking? Xx
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  • Posted

    Hi guys quick update, I had blood tests (not for Lyme as doctor said it wouldn't show up after all this time) but turns out I have a calcium deficiency, got to have more tests for vit D & celiac. Starting treatment in couple of weeks for the calcium (and vit D if necessary) not sure if anything's related to Lyme, or if it was Lyme, but at least they've figured something out smile love to all xx
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  • Posted

    dear bluebell,

     If you can get to the hemel hempstead clinic and can afford to have a consultation and extensive Lyme testing as I did I think it may be worth every penny. Antibiotics only kill the lyme in its spirocete form; it can last in your body indefinately and also mutate and hide in cycst form and cell wall deficient bacteria form. Each form needs a different approach/ medication to irradicate effectively. The symptoms you have could be related to the Lyme or be the result of Lyme effecting other health problems.  I was tested comprehensively for all the different types of tick born infections( not just borrelia), plus viral co infections to which I had 3 active. All my tests, and consultations came to approx £600 +. now I pay for any medicines and follow up consultations that my GP/NHS cannot cover.  my GP surgery does simple blood tests, ( kindnet, liver function, white bloodcell count etc) prescribes antibiotics, anti parasitics, and pain relief, has referred me for NHS MRI scans for example. I have to pay for the other medicines/ related suppliments that go with the treatment.  6 months of antibiotic pulse therapy hasn't worked. I am about to undertake a 6 week IV antibiotic and Irotherm heat therapy, (5 -days a week) as a last resort. ( approx £6000. mega bucks yes, - but if I cannot get well my life will be a rightoff) Please do not give up. sometimes i feel I have been unwell for so long I cannot remember what its like to be well myself. I will let you know how I feel once the IV treatment is done. recently I met a couple at the clinc who both had contracted Lyme in Devon, had had to move house to get to the treatment. One was already better, and it gave me hope that I was persuing the right route. so many people will tell you different info about Lyme.

    good luck! x

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    • Posted

      At last there may be some hope after what`s been in the news lately, because as you say a husband/wife both had Lyme...the millionaire involved is convinced it`s passed between families and not just by a tick...by putting his money into research, he`s hoping for treatmen/cure....it`s not forthcoming elsewhere....so here`s hoping!
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