Joined forum looking for info on the big mystery that is Lyme disease. My brief summary of my history:
Sept 4th - Whilst on honeymoon in Greece i fell ill, woke with pins and needles in arms, legs, face - slurred speech etc. That passed and had awful headache and sickness for 12hrs then all passed.
Sept 11th - 2 days after returning home to UK fell ill again with same symptoms. Drifted in and out of consciousness and was rushed to hospital.
Had numerous tests inc ECG, Chest X-Ray, CT Scan, then a lumbar puncture. All they found was high levels of white blood cells indicating a blood infection. I was put on IV drip for 6 days where in meantime they did tests on CSF and came back saying it was Viral Meningitis. Had pins and needles on last night in hospital where the side i was laying on went numb, mentioned to docs who said it was expected to have these odd feelings after infection.
Sept 17th - left hospital and apart from headaches was fine for a few days until i started getting pins and needles during night. Not as bad as before i.e. face would not go numb but still waking me up every 2 hrs.
For weeks i would have some nights where i would still wake up but no pins and needles and then other nights where they would return. One night it was particularly bad in that i got no sleep and the pins and needles spread to all hands and feet. On Oct 9th I was taken back to hospital and blood tests etc done and given all clear. They suspected anxiety causing the pins and needles and gave me diazepam 2mg to take. After this i had some good sleep but eventually the pins and needles creapt back in. Although not as bad as before they were still evident at night but i started to deal with them and get sleep.
This has been ongoing for a while now where i have got used to having the odd pins and needles at night - some nights worse than others. Im also getting a lot of aches and pains in shoulders, neck and back.
After another restless night along with some bad muscle pains i went to see my GP last Friday who has referred me to a Neurologist for further tests. How long i have to wait is anyone's guess.
Now Lyme disease has been mentioned by a friend in the medical field although not by my GP - i found out that luckily i have a lyme specialist local to me but as not through NHS i would have to pay for private cosultations.
During the day im fine, have energy and even go to gym but at night i get very lethargic and get muscle aches more than i ever did before. Im 28 and quite fit and am used to getting muscle aches but this is more than i have experienced. My arms also tire very easily especially at night and the more tired they are before sleep the worse the pins and needles appear to be. I can replicate the problem if i sit with bent knees for a while or lay on my arm, things i could do before for hourse before any tingling now only takes a couple of minutes for it to start getting the sensations which explains why when im sleeping its a problem.
Ive tried numerous things like hot baths before bed, some kalms sleeping pills, herbal stuff etc to make sure its not anxiety etc but after weeks of being convinced i was fine the pins and needles remained and i just got used to them. So now im trying to find out the cause - Lyme is a possibility but whenever i read info it worries me as if i do have it how is this proven and will they do the right things? The specialist is a great option but at £150 for a consultation and £400 for the actual tests i cant afford to be paying that at the moment for something i may not even have.
Do i wait for the the neurologist appointment? I assume they will at least be aware of Lyme and will do tests accordingly? if so then they may even refer me to the lyme specialist which might mean costs covered? if however they find nothing im back to square 1 and will want to see the specialist but might feel i should have gone to see him straight away rather than wait for the appointment? What would be your advice?