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jimmyca69
New Member


Date Joined Nov 2008
Total Posts : 2
   Posted 11/24/2008 6:04 AM (GMT -6)   
Hi all
 
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?
 
 

dorit
Regular Member


Date Joined Nov 2008
Total Posts : 375
   Posted 11/24/2008 8:37 AM (GMT -6)   
hi jimmyca69, do you remember a tick bite? is there a possibility to get a test for lyme done quickly (before your appointment with the neuro) at your family doc. Could you talk to him again?
I stay in Europe too; here the tests are often ordered by the fam.docs, and the llmds give further advice for (long term) treatment with abx; It´s said that the CSF results for Lyme are (only !!! ) about 20% positive; a blood test (elise and westernblot together) gives you at least more information.
take care! greetings to the UK ! Dorit

jimmyca69
New Member


Date Joined Nov 2008
Total Posts : 2
   Posted 11/24/2008 8:54 AM (GMT -6)   
Hi Dorit

No i dont remember any tick bite at all - i know we had a few mossies in our room for first night abroad and my wife got bitten but i didnt find any bites on me. But then again i didnt actively look.

I can probably see about getting a test for lyme done although not sure how my GP would take to being asked to arrange a test. Im not keen on having another lumbar puncture done especially as its not got a good success ratio. However i can see about getting a blood test done - i just wonder what the UK docs here do for testing - do they do the elise and westernblot? i know the when i spoke to the lyme specialist local to me he said he would need to send samples to America to get results which is why they cost so much.

dorit
Regular Member


Date Joined Nov 2008
Total Posts : 375
   Posted 11/24/2008 2:18 PM (GMT -6)   
hi Jimmyca69,

I don`t know anything about the (health insurance -) regulations in the UK referring to arrangements or payment of those tests...here it is like if you say that there was something like a little rash you thought might be an allergy (for example to the sun in greece..) or something, a lot of docs got more or less willing to send you to testing and the insurance pays it, lyme is getting somehow a hot issue to some of them.

sorry for my typing error referring to the tests; is is elisa (not elise, sorry!!); the westernblot is more precise and gives you an affirmation to an eventually positiv result from the elisa; I got the westernblot done together with the elisa after working on my doc and finally he gave in and the insurance paid it without any problems;

I`ve heard that there are different species of spirochetes around in Europe and the States so maybe the tests should be done in the UK ?! Or have you been to the States before you went to Greece so that it is of importance to be tested there? Is there a self-help group around you who could give you additional information refering to the tests? As far as I remember, my tests were around 70 Euro (together) , done in Hamburg.

Do you know how your intervertebral disks were doing? I had a (very ...) hard time with two of mine (after an accident) and the pain / symptoms you describe were similar sometimes.
I hope you will get medical treatment soon and you will get rid of your pain! Keep us informed!
dorit

Martha's Vineyard
Veteran Member


Date Joined Jul 2008
Total Posts : 1119
   Posted 12/3/2008 12:04 AM (GMT -6)   
When I first got bitten by a tick I got very ill. a 105 fever and a terrible pain in the neck, then the next day it would move to my hips
then my knees. Then the vomitting. then the depression. then the terrible fatique.
when you have lyme, you wake up the worst in the morning. it does not come after a good workout with lyme you will not even want to work out.
photosensitivity, niose, heat, fever, loss of appetite.
then memory loss really bad.
you may very well have something else. your complaints to not sound like the regular whines of lyme. Look at the beginning of the forum
and read all of the symptoms. then you will see how you measure out. and for your sake, I hope your dr, was right with his other prognoses.
best.
marie
2004 in Martha's Vineyard me and my two daughters then 11 mos and 6 all got Lyme Disease. This was only known to us because we found the tiny ticks on us and we got very ill. My dog also got lyme and he went lame.
We have fought it for 4 years to no avail.
We all got it again this summer is Texas.
I am now in treatment in Scottsdale Arizona at Envita.

"The eyes cannot see for for what the mind does not know."

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