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Louise’s Story

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On holiday in Luxembourg. At swimming pool & after a swim I lay on towel for a few minutes of sunbathing (legs on manicured cut grass). After short time sat up & found tick attached. Tick carefully removed with tweezers. Tick was only attached for short time. No rash & no symptoms. Three and a half weeks later had stiffness between shoulder blades in bed and feeling not quite right – couldn’t get comfortable. Remembered tick bite & looked up on Internet & went to see GP. GP wanted blood test done but did not prescribe antibiotics. (Consulted ID – advised tick needed to be attached for 24 hours for infection). Symptoms got worse – numbness in face & tongue. Finally got antibiotics at 6 weeks post bite (but only 100mg per day for 2 weeks  instead of recommended 200 mg per day. After pointing this out to GP got 2 weeks of 200mg per day) but was very unwell (brain fog, chills, twitches, vertigo, dizziness and terrible fatigue). Two blood tests done by NHS – both negative. Three months off work. Slowly recovered and returned to work. Symptoms returned shortly after return to work. GP gave 4 weeks 200mg per day but having read alot of info online self medicated to 400mg per day for 6 weeks. Now on Buhner herbs & trying various treatments – biomagnetism, bioreasonance & rife machine. Also taking many supplements. All of this is at personal expense. Still with ID in NHS but no treatment offered so far.

Trying to stay as well as possible with Lyme involves a strict diet (sugar & dairy free) which needs planning and good organisation; continuous detoxing which also takes time; organising supplements and herbs; coping with distressing physical symptoms along with emotional aspect of the disease. Much time taken up researching disease and how to get better. No doctor to point out the way to go and feeling of abandonment by NHS. No help line or counselling service or support of any kind apart from Facebook groups, yet this disease can be devastating and potentially disabling. Have managed to go back to work part time but difficult to manage along with everything else. Still managing a few social outings but felt isolated when very ill. (Alternative practitioners I have met are all treating multiple lyme patients !)