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Neurology (Expert Forum)
lyme disease
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lyme disease
by lat67, Mar 30, 2007 12:00AM
I have spent the past two years with neurological symptoms and was finally diagnosed with lyme disease. I am wondering what your opinions are on all the contraversy that surrounds getting a lyme dx. What course on treatment would you put a patient on if you suspected cronic lyme disease?
Thanks so much for your time.
Lesley
Thanks so much for your time.
Lesley
Doctor's Answer
by Forum-M.D.-SH, Apr 21, 2007 12:00AM
First of all, keep in mind that I am unable to diagnose you because I am unable to examine you, this forum is for educational purposes.
The diagnosis of 'Chronic Lyme disease' is quite controversial. Lyme disease is caused by the spirochete bacterium Borrelia burgdorferi and is transmitted to humans through deer ticks. Primary infection (recent/acute infection) is characterized by fever, flu-like symptoms, rash (bulls eye rash that expands overtime) and muscle aches. Not everyone experiences the primary infection symptoms. With secondary lyme disease, the bacteria has evaded the immune system and causes an number of different potential problems including cardiac problems, migratory arthritis and neurologic symptoms (including numbness/tingling, problems thinking/psychiatric manifestations, etc). Many patients have the neurological symptoms that are common in 'chronic lyme' and they are worked up for multiple sclerosis, cervical disc disease, depression, schizophrenia, etc, because these diseases present in a similar fashion. However, many paitents with these type symptoms (very vague an non-specific, which makes diagnosis difficult) have extensive testing and never get a formal diagnosis, and the possibility of lyme disease is often attractive to these people as an alternative. The bacterium Borrelia burgdorferi of lyme disease does evade the immune system and that makes diagnosis itself very difficult. The first test is an ELISA test for lyme antibodies (IgG and IgM) which can be negative even with the disease present. Next is a western blot for lyme protiens, which is more specific, but is not widely used. PCR tests are also available, but these can also be falsly negative because the bacterium does not reproduce often enough to be amplified. Thus many patients get a 'clinical' diagnosis of lyme disease because the test are unreliable and the symptoms are very disturbing. I would encourage you, if not done already, to have an extensive diagnositic search including going to an academic medical center to look for other causes of your symptoms unless you had an acutal positive test. Some things that can help in diagnosing neuro lyme disease include a lumbar puncture to evaluate the spinal fluid for signs of inflammation and Borrelia burgdorferi protiens/DNA, MRI of the brain (often shows multiple periventricular non-specific white matter changes-that can also be seem in multiple sclerosis, hypertension and migraine headaches), a cerebral angiogram that may show changes consistent with vasculitis and a SPECT scan of the brain. The SPECT scan is probably the most usefull and can demonstrate areas of low blood flow in the areas that are generating symptoms. Treatment for chronic lyme is also controversial, the standard practice is to give doxycycline for 3-6 weeks and then evaluate for improvement. Some people have been tried on high dose ceftriaxone IV if they did not respond to the initial treatment. Unfortuanately, some people do not repsond to the antibiotics and it is never clear if they have refractory lyme or if they really never had lyme in the first place (common since the neurological symptoms of lyme are also seen in many other disorders).
I hope this has been helpful.
The diagnosis of 'Chronic Lyme disease' is quite controversial. Lyme disease is caused by the spirochete bacterium Borrelia burgdorferi and is transmitted to humans through deer ticks. Primary infection (recent/acute infection) is characterized by fever, flu-like symptoms, rash (bulls eye rash that expands overtime) and muscle aches. Not everyone experiences the primary infection symptoms. With secondary lyme disease, the bacteria has evaded the immune system and causes an number of different potential problems including cardiac problems, migratory arthritis and neurologic symptoms (including numbness/tingling, problems thinking/psychiatric manifestations, etc). Many patients have the neurological symptoms that are common in 'chronic lyme' and they are worked up for multiple sclerosis, cervical disc disease, depression, schizophrenia, etc, because these diseases present in a similar fashion. However, many paitents with these type symptoms (very vague an non-specific, which makes diagnosis difficult) have extensive testing and never get a formal diagnosis, and the possibility of lyme disease is often attractive to these people as an alternative. The bacterium Borrelia burgdorferi of lyme disease does evade the immune system and that makes diagnosis itself very difficult. The first test is an ELISA test for lyme antibodies (IgG and IgM) which can be negative even with the disease present. Next is a western blot for lyme protiens, which is more specific, but is not widely used. PCR tests are also available, but these can also be falsly negative because the bacterium does not reproduce often enough to be amplified. Thus many patients get a 'clinical' diagnosis of lyme disease because the test are unreliable and the symptoms are very disturbing. I would encourage you, if not done already, to have an extensive diagnositic search including going to an academic medical center to look for other causes of your symptoms unless you had an acutal positive test. Some things that can help in diagnosing neuro lyme disease include a lumbar puncture to evaluate the spinal fluid for signs of inflammation and Borrelia burgdorferi protiens/DNA, MRI of the brain (often shows multiple periventricular non-specific white matter changes-that can also be seem in multiple sclerosis, hypertension and migraine headaches), a cerebral angiogram that may show changes consistent with vasculitis and a SPECT scan of the brain. The SPECT scan is probably the most usefull and can demonstrate areas of low blood flow in the areas that are generating symptoms. Treatment for chronic lyme is also controversial, the standard practice is to give doxycycline for 3-6 weeks and then evaluate for improvement. Some people have been tried on high dose ceftriaxone IV if they did not respond to the initial treatment. Unfortuanately, some people do not repsond to the antibiotics and it is never clear if they have refractory lyme or if they really never had lyme in the first place (common since the neurological symptoms of lyme are also seen in many other disorders).
I hope this has been helpful.
Thanks, Mel
Good luck.
In my case, I went to a doc in the box a week after discovering a tick which had been on the back of my knee for a week prior to that, and was given 10 days of oral antibiotics. I had already been through the flu symptoms, joint soreness, and fatigue before I saw him, and the bulls-eye rash was almost gone as well. Not knowing that I should have had 30 days of AB, I pretty much forgot about the whole deal, even when I went back to the same clinic 6 months later with arthritis in my left shoulder so bad I was checked for cardiac problems first. That doctor never looked at my records or the notes from my last visit, so when my hands, wrists, and ankles became swollen 6 months after the second visit, I still never thought about Lyme. That's when I went to an orthopedist, thinking it was something like carpal tunnel or tennis elbow. He was alarmed by the heat from the inflammation, and the fact that couldn't discern the temperature difference with my own hands. He referred me to a rheumatologist, who simply believed that Lyme disease could not be 'caught' in Virginia. A second rheumatologist dismissed Lyme when only one of the supposedly indicitave bands was present on the blood test and because he said Lyme