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What Causes Lyme Disease?
Question: I am wondering about lyme disease. My husband has had it one time for certain (several years ago) giant rash and prescribed doxy for 4 weeks. since then has been bitten by ticks numerous times, we live in the woods on a deer path. After 2 tick bites in the past year he took 2 doxy (each time) and then forget about it, did not follow up with a dr. He has been having a lot of neurological symptoms since October 2014, just a few months after those 2 tick bites. He has muscle twitches, slurred speech and neuropathy in his left leg and foot, severe limp. Speech is getting worse, sounds as if he has had a stroke. He is being assessed for possible ALS at Mass General.
He had a lyme test in January and came back negative. The infectious disease dr's at Mass General looked at the January lyme results and state that he does not have lyme, but did not re-test, moved him over to the ALS clinic. I have read a lot about false negative lyme tests and wonder why more sensitive lyme tests were not done. He has other issues, an eye infection that keeps coming back (prescribed antibiotic eye drops) as well as tooth pain. Also having severe hip and back pain and what appears to be slight bells palsy. Cognitive changes also, big personality changes, and memory problems. He has had numerous MRI's and exrays on his brain, hips, back, which do not show anything conclusive. He does have spinal stenosis in the lower back and had a laminectomy in 2007.
Thinking we need to find a dr very educated on lyme disease quickly. These expert doctors are hard to find and there seems to be a lot of hype about lyme on the internet. Don't know what to believe except that statistically speaking, to me it seems far more likely that he has underlying lyme than ALS.
Do you think getting re-tested for lyme is the right course of action? If so, how and where do we find a really good dr who will give this the immediate attention I think it deserves?
Please note, we live in a very active lyme community in Western Massachusetts.
Your opinion please.
He had a lyme test in January and came back negative. The infectious disease dr's at Mass General looked at the January lyme results and state that he does not have lyme, but did not re-test, moved him over to the ALS clinic. I have read a lot about false negative lyme tests and wonder why more sensitive lyme tests were not done. He has other issues, an eye infection that keeps coming back (prescribed antibiotic eye drops) as well as tooth pain. Also having severe hip and back pain and what appears to be slight bells palsy. Cognitive changes also, big personality changes, and memory problems. He has had numerous MRI's and exrays on his brain, hips, back, which do not show anything conclusive. He does have spinal stenosis in the lower back and had a laminectomy in 2007.
Thinking we need to find a dr very educated on lyme disease quickly. These expert doctors are hard to find and there seems to be a lot of hype about lyme on the internet. Don't know what to believe except that statistically speaking, to me it seems far more likely that he has underlying lyme than ALS.
Do you think getting re-tested for lyme is the right course of action? If so, how and where do we find a really good dr who will give this the immediate attention I think it deserves?
Please note, we live in a very active lyme community in Western Massachusetts.
Your opinion please.
Brief Answer:
I agree that ALS more unlikely than anything else right now
Detailed Answer:
Good evening. I am a neurologist and deal with a relatively good number of Lyme patients yearly due to the neurological implications and consequences that occur when poorly treated or treated late. I agree with you that ALS is less likely than Lyme BUT FOR THE FOLLOWING REASON:
You state he has NEUROPATHY in his leg. I assume you refer to a SENSORY form of neuropathy? ALS is a motor neuron disease and although to state categorically that ALS patients NEVER suffer from sensory symptoms is the quickest way to become the laughing stock at your favorite meeting of peers...in reality that is approximately a true enough statement in about 99.9% of patients to be able to say that in THIS PARTICULAR setting with the possibility of some infectious entity known to cause sensory types of symptoms and who you say to your knowledge has been bitten by more ticks in the past couple years than I've ever read about in my entire life!
I recently consulted on a patient who came back to the U.S. from Germany and who witnessed a tick to be on him when he awoke. Overseas he went to the ER and they told him it wasn't a contaminated bite though they did very little to assess the lesion. When he got back to the states I had him do specific Western Blot and PCR testing which were positive. He was immediately started on appropriate antibiotics and his symptoms of paresthesias and weakness which had begun to develop began resolving over a period of 2-3 weeks. I'm sure that had we not the more advanced blood work this patient would've fallen through the cracks.
I do not think it unreasonable for your husband to be retested with more 2nd and 3rd XXXXXXX tests BUT with the caveat that a physician should first conduct a good solid physical examination, get the history well organized, and then, making the decision for lab and/or diagnostic testing.
How to find a GOOD DR? Well, you could consult HEALTHGRADES.COM and do a query for doctors who deal with Lyme or other infectious entities. Or you can call your State Medical Board and ask them for local specialists in your geographic location.
I hope these answers satisfactorily addresses your question. If so, may I ask your favor of a HIGH STAR RATING with some written feedback?
Also, if there are no other questions or comments, may I ask you CLOSE THE QUERY on your end so this question can be transacted and archived for further reference by colleagues as necessary?
Please direct more comments or inquiries to me in the future at:
bit.ly/drdariushsaghafi
I would be honored to answer you quickly and comprehensively.
Please keep me informed as to the outcome of your situation.
The query has required a total of 28 minutes of physician specific time to read, research, and compile a return envoy to the patient.
I agree that ALS more unlikely than anything else right now
Detailed Answer:
Good evening. I am a neurologist and deal with a relatively good number of Lyme patients yearly due to the neurological implications and consequences that occur when poorly treated or treated late. I agree with you that ALS is less likely than Lyme BUT FOR THE FOLLOWING REASON:
You state he has NEUROPATHY in his leg. I assume you refer to a SENSORY form of neuropathy? ALS is a motor neuron disease and although to state categorically that ALS patients NEVER suffer from sensory symptoms is the quickest way to become the laughing stock at your favorite meeting of peers...in reality that is approximately a true enough statement in about 99.9% of patients to be able to say that in THIS PARTICULAR setting with the possibility of some infectious entity known to cause sensory types of symptoms and who you say to your knowledge has been bitten by more ticks in the past couple years than I've ever read about in my entire life!
I recently consulted on a patient who came back to the U.S. from Germany and who witnessed a tick to be on him when he awoke. Overseas he went to the ER and they told him it wasn't a contaminated bite though they did very little to assess the lesion. When he got back to the states I had him do specific Western Blot and PCR testing which were positive. He was immediately started on appropriate antibiotics and his symptoms of paresthesias and weakness which had begun to develop began resolving over a period of 2-3 weeks. I'm sure that had we not the more advanced blood work this patient would've fallen through the cracks.
I do not think it unreasonable for your husband to be retested with more 2nd and 3rd XXXXXXX tests BUT with the caveat that a physician should first conduct a good solid physical examination, get the history well organized, and then, making the decision for lab and/or diagnostic testing.
How to find a GOOD DR? Well, you could consult HEALTHGRADES.COM and do a query for doctors who deal with Lyme or other infectious entities. Or you can call your State Medical Board and ask them for local specialists in your geographic location.
I hope these answers satisfactorily addresses your question. If so, may I ask your favor of a HIGH STAR RATING with some written feedback?
Also, if there are no other questions or comments, may I ask you CLOSE THE QUERY on your end so this question can be transacted and archived for further reference by colleagues as necessary?
Please direct more comments or inquiries to me in the future at:
bit.ly/drdariushsaghafi
I would be honored to answer you quickly and comprehensively.
Please keep me informed as to the outcome of your situation.
The query has required a total of 28 minutes of physician specific time to read, research, and compile a return envoy to the patient.
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Above answer was peer-reviewed by :
Dr. Chakravarthy Mazumdar
Answered by
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