Posted 5/20/2015 4:39 AM (GMT -5)
I would like to have an answer to my questions do I really have lyme OR is it something else
I cannot figure out .I am 54 yrs old and I have been diagnosed with CFS in 2001.At that time my mainn complaints were excessive fatigue and poor excersize tolerance and frequent upper respiratory tract infections;
Those symptoms were waxing and waining for the next 9 years
IN 2008 I got an epsiode of excruciating pain in the ulnar nerve in my left arm. I could bearly walk as the pain radiated from spine to my arm.I took lyrica 2x 75 mg for the pain and luckily it vanished after 8 months.
In 2009 I had a sudden episode of strange symptoms which landed me IN the ER.
It felt like a heart attack and begun suddenly my main symptoms were like a sudden feeling of unwellnes , like you are going to die , followed by severe anxiety;During this episode I also had high bloodpressure like
190/110. They could not find anything wrong. I went home and these symptoms continued for 2 more days with something new a feeling of tingling in my whole body except in the head and walso a feeling like u got the flu
On the 4th day symptoms disappeared as fast as they came . I have to mention I had gotten my regular flu shot 3 days before this incident.
4 weeks later i had theextra flu sho tfor the mexican or swine flu ( remember it was 2009)
After that i got the same sympoms of sudden onsetof uwellness , tingling and extreme anxiety, bt they laste for only a couple of hours and then graduallly fade away
I had these episodes at first a couple of tmes a week,then later a couple of times a month and gradually diminishing in duration and intensity they totally disappeared in the summer of 2011.
Between june 2011 and december 2012 I had mainly a resurgence of my chronic fatigue
I had to have an emergency heart operation in december 2012 from the moment I woke up from the surgery I started having these attacks of feeling unwell with extreme anxiety.
Since my operation I cannot sweat anymore and I fainted on the tilt tabletest and I cannot stand hot weather anymore and my hands and feet are feeling cold all the time.This points to an abnormal functioning of the autonomic nervous system, But lyme disease cannot produce dysautonomia ( malfunction ans)
I ended up 4 times in ER , went to see an MD specialised in internal medicine who said chronic lyme does not exist. but he gave me amisulpride an atypical neuroleptic and this helped.It worked for 3 months I did not have any of these terrible neuro symptoms then suddenly it stopped working and these feeling of malaise and the nervousness came back
During the period iwas well I went to see an LLMd who tested me for lyme with an ellspot llt test (done in augsburg germany)It turned postive 2-4-0 elisa was negative, pcr for lyme negative and thck droplet blood test negative
HE started me on IV rocephine for 6weeks followed by Azythromicine for 6weeks .after 2 weeks i got unwel, could not toleratethe azythromycine and at the same time the amilsulpride stopped working
I then started (oct 2014) with the Sapi protocol( samento, banderol, burbur and pinella) up to now, with very little progress.
DO I HAVE LYME?
My only symptoms now are neurological. I have no joint pain no muscle aches, some problems with staying asleep but taken care of by mirtazapine.I have this unusualfeeling in my brain, I feel there is somthing wrong, I have difficulty concentrating , sometimes I hav brain fog,but the most annoying is afeeling of nervousness that I am on edge and cannot relax as if my orthosympathic nervous system cannot wind down
IT isterriblehowever thei ntensity of symptoms fluctuate between unbearable to a little less , but always present until 10 pm Then the symptoms disappear at night to start again around 9 am
THis is weird!I s this lyme, has anyone experienced such a strange thing as this sudden stop(or start) of symptoms at a particular hour Is it possiblefor lyme disease to only have neuro symptoms and no others?
Please can anyone help me understand! I wating for your posts
yhanks jack