Hi,
I am desperate for help! Since Dec 2011 I have been suffering with neuropathy ( walking very slow) fatigue, numbness, tingling legs, burning sensation arms and legs and most recently arthritis in neck, ( with enlarged lymph node), shoulders, elbows, wrists, fingers and knees also muscle pain oh and painful lumps on forehead!
I am being seen by an NHS consultant in London after previous appointments with a private neurologist who I have seen since Jan 2012. I have had numerous blood tests, MRI's, and a CT scan oh and nerve conduction studies and evoked potential tests. In Jan my blood test for Lyme was negative as was MRI and CT. .In Jan because my walking was so bad ( I could barely lift my left foot off the floor) I had IvIg intravenously.
I seem to have relapses every couple of months although the last one involving joint and muscle pain was the worst one I have ever had.I was referred toa rheumatologist, as my ESR was 50, who gave me a steroid injection in my thigh. The pain subsided over a few weeks.
My most recent Lyme blood test came back with a borderline positive result in Sep so it was sent to a specialist lab for a definitive result. Well it came back negative, but as everybody seems to know there is no definitive blood test for Lyme. So people today I went to my GP and asked her to please help me by referring me to a lyme specialist as all my symptoms can be explained by Lyme disease. She refused and has told me she will ring my NHS neurologist in London to discuss my case. I feel like I'm hitting my head against a brick wall and I'm really worried about the IvIG and steroids I've had which, if I do have Lyme were totally inappropriate!
Any thoughts?
Thanks,
Chrissy W
Hi,
I had lyme disease 3 years ago.It all happened to me so fast.I got a tick bite on my leg,a week later I noticed a strange rash appearing on my leg and a few others on my abdomen.Felt extremely tired,muscle and joint pain,vomitting,headache then I had a convulsion was rushed to hospital became paralysed from my waist down within a few hours,then from my neck down.I could no longer breathe on my own so I was put on life support and in an induced coma for 4 months.I don't remember anything about those four months,I had meningitis,endocarditis,septicemia,pulmonary oedema......the list goes on....I was initially being treated for Guillian Barre disease(an acute polyneuropathy affecting the peripheral nervous system) which incuded ivig, plasmapheresis etc I wasn't getting better and the blood results etc weren't making sense so I was tested for a million different things and it turns out it was lyme disease.It was everywhere in my spinal fluid,in my blood,in my brain...it affected every organ in my body.I was immediately started on treatment for lyme disease and I got better and better month by month.I was in hospital for a year and in a rehabilitation hospital for 4 months.I had to learn how to do everything again.The only way I was able to communicate at the beginning was by blinking.One blink was a yes and two was no etc...It is now three years later and I am walking again.It took a lot of hard work to get where I am today!
If I were you I would get a second opinion,a third opinion whatever it takes.I would even go abroad if I had to.Lyme disease can get very serious.Lyme disease affects people differently.I have read about how inaccurate those blood results etc can be.You need to be treated with IV ceftriaxone if you have lyme disease,oral antibiotics aren't enough.
Not sure if you had an ELISA test but, if you did, Lyme may not present itself that early. A second test is always recommended
I would also STRONGLY RECOMMEND joining the Lyme Disease UK Discussion group on Facebook if not already done so, and talking to the Lyme Disease Action website. They can offer a lot of resources and advice!