Lyme Disease Support Group
Lyme disease is the most common vector-borne disease in the Northern Hemisphere. It is now one of the fastest growing infectious diseases in the U.S. Lyme disease is caused by infection with the Borrelia burgdorferi bacteria, and is primarily transmitted to humans as well as dogs, horses and other domesticated animals by the bite of infected ticks.
Hi everyone - I hope you don't mind me posting on here...I have jumped across from the Myasthenia Gravis Group as I am desperately trying to find some answers! Can any of you tell me if you can relate to any of my symptoms/story...or can give me any advice or information at all!
10 years ago when I was 23, I woke up with one sided facial weakness and eye droop, this progressed into a my arms and legs becoming easily fatigued/weak/shaky, difficulty with chest pressure/dizziness on standing/pale skin(deathly at times!)/weak voice...my fatigue is more a need to rest my body than sleep..though I could sleep quite easily!! lol All symptoms improve with rest and worsen with activity/heat/alcohol/stress and generally seem to fluctuate. I had spent almost 12 months prior to this being told I had Post Viral Fatigue due to fluctuations in general fatigue and generally feeling unwell/flu-like. I had lots of tests (bloods/Scans etc) and nothing showed up -I was dismissed and sent to a Doctor who dealt with strange cases - she started me on high level B12 injections and Vitamin&mineral supplements , natural diet etc and I did improve. I had 2 pregnancies and 2 beautiful children during this time where my symptoms were intermittent and, providing I got plenty of rest (which meant not doing anywhere near as much as most people my age), they were relatively controlled. (I did have Viral Meningitis during this period confirmed by lumbar puncture in case this has any bearing!) However, last February....it all came back with a vengeance! Again, I have been thoroughly tested (including EMG/SFEMG this time) and yet again, nothing has showed up - but I do have a Clinical Diagnosis for Myasthenia Gravis....not that it seems worth much as the Doctors are (understandably) reluctant to treat without tests to back up the diagnosis!
The reason I have found you all and am posting here is that I was bitten by a tick, 3 months before this recurred last February - I removed the tick from the back of my neck, I am not sure how long it had been there and I don't remember any rash or anyone noticing a rash? I have now discovered that infected ticks have been reported in the specific area where I was bitten...although it seemed to be Spotted Fever that the study was looking for rather than Lymes disease in that study!....but Lymes has been reported in the general area also!
I will just mention, in case there can be any connection - that about 10months before the onset of this all 10 years ago I was bitten by something (more bug like as it wasn't attached to my skin - it just left bites) in New York when I was working for an airline and I had to see medical staff and be passengered home as I felt quite unwell and my leg was swollen with it - this was around the time Wile Nile (?) virus was in the news in New York.
I just wondered if any of you feel my symptoms and onset seem in any way consistent with Lymes?? I may just be clutching at straws but felt it was worth asking. I have checked my blood tests and don't appear to have had any of the blood tests mentioned for Lymes...though It seems they are not always conclusive. If it has any bearing I am in the UK.
Many thanks for taking the time to read this - I would be so grateful for any advice or information any of you might be able to give me :)x
10 years ago when I was 23, I woke up with one sided facial weakness and eye droop, this progressed into a my arms and legs becoming easily fatigued/weak/shaky, difficulty with chest pressure/dizziness on standing/pale skin(deathly at times!)/weak voice...my fatigue is more a need to rest my body than sleep..though I could sleep quite easily!! lol All symptoms improve with rest and worsen with activity/heat/alcohol/stress and generally seem to fluctuate. I had spent almost 12 months prior to this being told I had Post Viral Fatigue due to fluctuations in general fatigue and generally feeling unwell/flu-like. I had lots of tests (bloods/Scans etc) and nothing showed up -I was dismissed and sent to a Doctor who dealt with strange cases - she started me on high level B12 injections and Vitamin&mineral supplements , natural diet etc and I did improve. I had 2 pregnancies and 2 beautiful children during this time where my symptoms were intermittent and, providing I got plenty of rest (which meant not doing anywhere near as much as most people my age), they were relatively controlled. (I did have Viral Meningitis during this period confirmed by lumbar puncture in case this has any bearing!) However, last February....it all came back with a vengeance! Again, I have been thoroughly tested (including EMG/SFEMG this time) and yet again, nothing has showed up - but I do have a Clinical Diagnosis for Myasthenia Gravis....not that it seems worth much as the Doctors are (understandably) reluctant to treat without tests to back up the diagnosis!
The reason I have found you all and am posting here is that I was bitten by a tick, 3 months before this recurred last February - I removed the tick from the back of my neck, I am not sure how long it had been there and I don't remember any rash or anyone noticing a rash? I have now discovered that infected ticks have been reported in the specific area where I was bitten...although it seemed to be Spotted Fever that the study was looking for rather than Lymes disease in that study!....but Lymes has been reported in the general area also!
I will just mention, in case there can be any connection - that about 10months before the onset of this all 10 years ago I was bitten by something (more bug like as it wasn't attached to my skin - it just left bites) in New York when I was working for an airline and I had to see medical staff and be passengered home as I felt quite unwell and my leg was swollen with it - this was around the time Wile Nile (?) virus was in the news in New York.
I just wondered if any of you feel my symptoms and onset seem in any way consistent with Lymes?? I may just be clutching at straws but felt it was worth asking. I have checked my blood tests and don't appear to have had any of the blood tests mentioned for Lymes...though It seems they are not always conclusive. If it has any bearing I am in the UK.
Many thanks for taking the time to read this - I would be so grateful for any advice or information any of you might be able to give me :)x
You have certainly gone through a whole range of serious
ailments and I can't say that 'the same ones happened to me'.
Yet, I did flounder about for some 10 years before my
alternative doctor tested me and diagnosed me with Lyme.
He is what's call in the US, a Lyme Literate doctor. That means,
that he'd treated it for a number of years and knew how to make
a clinical diagnosis based on symptoms as well as some
testing also.
Do you have such doctors in the UK is my first question?
The Western Blot by Igenex Lab I believe in Palo Alto CA
is one test for Lyme.
ILADS.org is a group that has good info and
if you email them, perhaps they know of a doctor in
the UK. Meanwhile, I'll look for a book I use that
may have a referral in Germany From which maybe
you could find someone where you are.
Keep asking questions and hopefully you'll find
the right people and medical people who can help you.
I had the Western Blot, the PCR and the CD-57.
Done They're in Palo Alto CA 94303.
p.s.s. I'm also told that you can test negative on some of
these and still have Lyme. It's a good place to start in my
experience.