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I think I have lyme disease. Anyone awake?

Posted , 8 users are following.

beefany
beefany

Hi. I'm currently at a loss for what to do and am pretty terrified right now. My name is Beth, I'm 19 years old and have been ill for the past 7 weeks. Doctors have been unable to explain it and started off by giving me antibiotics for a kidney infection I thought I had. Something strange happened whilst on these antibiotics. I reacted to every single one of them. Bar one. Amoxicillin. I initially felt miraculously better after taking this... of course this only lasted a day, and I started herxing (I believe that's the term?) which brought on a whole mess of neurological symptoms, all of which were attributed to an allergic reaction to the things. I was asked to come off them because they could see no signs of a kidney infection, I was in disbelief. Why did I still feel wrong? Was diagnosed with hyperventilation syndrome as an explanation for the neuro symptoms and was sent away.

Two days later, I was hit with several fatigue, a pain in my right hand, lower abdomen and head. I thought I'd contracted the flu because I was so run down. Hypervigilant as ever, I galloped to the doctors. I looked fine, glands were swollen though so they suspected perhaps glandular fever. Blood's were taken. Came back fine, slight inflammation, so was told to, effectively, get over it. That I'd been to the doctors so many times it was likely anxiety.

Tried to deal with that diagnosis, was experiencing stabbing pains in joints and muscles randomly. Was then woken by extreme vertigo in the middle of the night. Continued to experience weird seizurey type episodes, usually at nighttime, with tremors, muscle spasms and strange sensations. Parents were completely discarded at the night I'd take off work, unable to see what was going on.

I've since been referred to a general specialist (contradiction I know) who happens to officially specialise in infectious diseases. That won't be til next Tuesday. After wondering for a while now if I had lupus (sun sensitivity, rash on face) I happened across lyme disease. Kinda saw the similarities and have spent the last few hours cross referencing the events of the last few weeks with the progression of lyme disease.

Currently I'm sitting on the floor of my room, experiencing heart palpations, chest discomfort, tingly extremities, burning face etc. Looking to book an emergency appointment with a gp tomorrow in light of my recent discovery. Considering also whether it'd be helpful to cut out the middle man and go to a and e tomorrow morning, as I'm not sure what stage of the disease I'm at and I know a and e are often able to deal with these things in a more timely fashion.

My questions to you: is it normal for lyme disease sufferers to have a facial rash aggravated by sunlight?

I'm terrified of the prospect of herxing again, particularly when my symptoms are already terrible. Do I wait to see the specialist or book a Gp appointment for tomorrow?

I'm not sure whether this has been lying dormant or not, so as I say, I'm unsure what stage I'm in. Terrified. What's going to happen?

0 likes, 41 replies

41 Replies

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  • mana2012
    mana2012 beefany

    Posted

    Apologies my keyboard is a little messed up.

    If you find you are going nowhere with The Infectious Disease hosp you could try Michael Brown in Harley Street, his consultation is about £220, but i got it covered free under Bupa. Beware though, he is not in the moneyspinning Breakspere club, and will not treat you for the sake of it. His knowledge of Lyme is very good, and he also consults at hospital for infectous and tropical diseases i london. But if i were you, i would just get it checked it is not anything else causing your discomfort, get some scans done.

    As you know, the Lyme word causes alarm bells for most GPs/nhs, so just list your symptoms and allow them to come up with a solution.

     

    • jeanette25032
      jeanette25032 mana2012

      Posted

      Maybe i should see him. USA positive 7 bands IGM and 4 bands IGG. UK wouldn't accept results so they tested me in Winchester which came back negative. Did another one yesterday in France which was negative but IGM p39 and p41 got results. They say negative if under 5 and mine was 4.7 so i am baffled is this lyme or not. I'll for 7 years and had enough.
    • mana2012
      mana2012 jeanette25032

      Posted

      worth a shot perhaps? You can sign up to Bupa private health care, then cll Bupa for a list of specialists that can deal with Tropical and Infectious diseases. Lyme is not one of the conditions covered by Bupa, it is not listed in their system. And i believe a GP has to refer you, but i can't quite remember as i had a cloudy head at the time. If there is a chance you were bitten abroad while on holiday (like me, first in Portugal, then in Mallorca..bloody wetlands -tourist and tick traps wink, or even if you make it up that you were) - an infectious disease specialist should be able to consult you, and this is what Bupa covers. And Lyme counts as one of the many infectious diseases.

      He will also see private patients but as i say this is £200 + for the first visit only (1 hour).

    • mana2012
      mana2012 jeanette25032

      Posted

      continued...he is against all the 'expensive' testing from abroad, he feels there is a whole industry built around patients that are clearly ill and who are having trouble finding the source. and i agree, i just dont want you to loose your money. I would go with an open mind.

       

    • jeanette25032
      jeanette25032 mana2012

      Posted

      I would probably have got this abroad as I was a stewardess for 8 years and have lived in the middle east for 26 years although I come home at least twice a year for holidays. I got an mri in London 2 months back which showed my liver, kidneys and ovaries have multiple cysts. The doctor said maybe I was born like that although former scans never showed a problem. I have spent thousands over the years and seen some of uk's best doctors with no answers an still ill
  • Bea_51
    Bea_51 beefany

    Posted

    Have you had any luck with a diagnosis & treatment, if so what did it turn out to be? If not, check out a lot of websites on Mast Cell Activation Syndrome, Mastocytosis and Histamine Intolerance as the symptoms are similar to something I and my son have and we are trying hard to find a solution. Best of luck.
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