Hi Breia

Thank you so much for your lovely message!

I have been to my GP and they felt that Lyme is an interesting possibility - though my GP thought the tests were reliable given I would have to be late stages for Lyme to be my problem. The Lyme Action Association swiftly put me straight on that and said the tests are definitely NOT reliable!

My sample has been sent to the Rare Diseases Lab here in the UK and I am assured that I am having the most detailed tests.....which I assume is the Western Blot!

I am so confused, I have spent the last 2 years having all of the tests for Myasthenia, only to be told the tests are not reliable and despite my negative tests it is still possible.

However, despite my clinical diagnosis - they will not treat me fully because of the negative tests!

I am now very worried that I could be in the same boat with Lyme - I seem to have quite a few of the symptoms and credible exposure in endemic areas but if the tests are negative I will not really have a definitive answer??

I was hoping to either rule it in, or rule it out....but it seems that may not be the case....and my energy is so low as I get sicker that I am not sure I have the energy to chase this diagnosis - even though it does make alot of sense!!

Myasthenia would explain my facial droop and muscle fatigue/weakness - but Lyme would explain why I feel so ill, why I am pale, nauseous, need to lie down, motion sickness, headache, difficulty finding words...the list goes on!....and my persistent Costochondritis...and maybe even explain my "Bulky Salivary Glands" on my MRI!

But I am scared that without a test, there will be no treatment...or, at best, antibiotics in tablet form which seem pretty substandard when dealing with Lyme...especially the neurological symptoms from what I have read??

There are so many horror stories of people not being diagnosed...that I am scared this is another wild goose chase!! I am also scared by the amount of people who did get diagnosed but say the treatment didn't work for them...or sometimes weren't treated long enough!

Sorry to waffle on...as you can see, I send myself round in circles!! haha!!

Thanks again for your help and advice!
Eve.x