wendy, I am a clinical director of a hospice in mass. I have a few ideas in regards to these symptoms. My 35 yo sister has been fighting similar symptoms, since moving to conecticut (the lyme state). they are treating her for RA but quite sure this is lyme ( if you do research doctors are not allowd/it is illegal to treat lyme past the 30 day corse of antibiotics. therefore they cannot admit to lyme as issue. My husband tested negative for all lyme test for 3 months then multiple red odd shaped rings showed on his body for all of 5 minutes they treated him the 30 day tx and would not treat for longer even though he still had symptoms. he is going to see a RA md so he can at leaste start minocyclin regiem "for RA" really lyme. My 7 yr old son with some of these symptoms especially dry mouth and red hot ears occasional aches and pains had been bit by a tick. But all three have somthing in common that needs attention they all have enormous tonsills. Most likely strep carrier etc. the corrilation with all of this is it is the tonsills that run the overproduction of lymph cells that would cause some of these auto immune symptoms. DO you happen to have huge tonsills. ?how many people who had there tonsills removed have any autoimmune issues? (I bet not many) all very interesting questions.
I developed this "red ear syndrome" about 6 years ago, a month or so after returning from a mountain climbing trip to Mt.Rainier and Mt.Baker in August. It began as a hot, flushed, burning sensation on the left side of my face and forearm as I was driving home form work about 3-4pm. I thought it was just the sun shining through my car window. Next it would occur in the afternoon when I was at the gym and it was then that I noticed in the mirror how red my ear was. I am a nurse anesthetist so I immediately began to record my symptoms and when they occurred and I was also able to measure that the local skin temperature does increase when the flushing begins suggesting that this is some sort of neurovascular syndrome. I asked several surgeons about it and no one had a clue. I saw my Interal Med. MD who ran every test known to man. Then I saw a neurologist and a rhuematologist, both of which had no clue what this might be or any suggestions. The frequency of occurance and the intensity of my symptoms progressed over about 6 months to include burning along my left lateral thigh, calf and the sole of my foot. Eventually it spread to the right side but the flushing/ burning occurs only on one side at a time and only rarely on the right side. I can no longer wear socks or a hat because they are always burning to some degree and I feel as if I am overheating and might faint. The burning does not follow any nerve dermatone zones and does not appear to be linked to stress levels, alcohol intake, weather, but it does seem to occur more in the fall/winter for me and in the afternoon or night hours. But I live in SC so it might just be so hot that I don't actually notice the burning as much during the warmer months. After about a year my symptoms and flushing episodes sort of leveled off and have been stable ever since. The scary part is that I returned to Mt. Baker and Rainier the next fall with some friends and about a month after our return my climbing partner (Mark) and another friend (Pat) developed the same syndrome!!!!! We were all negative for Lyme's disease (which was every MD's 1st bet) Sojourns, Relapsing Polychondritis, fibromyalgia, carcinoid syndrome, an assortment of autoimmune disorders. You name it, we all got tested and were negative plus we are all pretty much healthy otherwise. Pat and I work at the same hopital but the mountain trips are the only common link that the 3 of us share. We all had mild flu like symptoms after we summited and then developed knee joint pain and then the flushing started. Now we all have very dry mucus membranes, just in the nose and have nose bleeds. Our MD's settled on either a chemical or biological toxic exposure (perhaps from melting snow for water) that produced some sort of neurological damage that also involves the vascular system and may involves the sympathetic nervous sytem. But if any of you out there have any thing similar to what we have then the Mountain trips can not be the causal link. Some one needs to start compiling a data base of symptoms and the onset and patterns of occurance. Pat (also a nurse with a PhD in Public Health) and I might be interested in developing a web site that would have persons with this syndrome complete a questionaire/assessment tool to be used to gather data and look for a common link. We are trying to pitch this idea to our Internal Med. Docs and maybe the local university public health department. It would be great to include a university that has a program in epideminology. If anybody out there has symptoms similar to ours or if you are interested in helping us try to launch this "data collection" project, please reply. Thanks
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wendy,
I am a clinical director of a hospice in mass. I have a few ideas in regards to these symptoms. My 35 yo sister has been fighting similar symptoms, since moving to conecticut (the lyme state). they are treating her for RA but quite sure this is lyme ( if you do research doctors are not allowd/it is illegal to treat lyme past the 30 day corse of antibiotics. therefore they cannot admit to lyme as issue. My husband tested negative for all lyme test for 3 months then multiple red odd shaped rings showed on his body for all of 5 minutes they treated him the 30 day tx and would not treat for longer even though he still had symptoms. he is going to see a RA md so he can at leaste start minocyclin regiem "for RA" really lyme. My 7 yr old son with some of these symptoms especially dry mouth and red hot ears occasional aches and pains had been bit by a tick. But all three have somthing in common that needs attention they all have enormous tonsills. Most likely strep carrier etc. the corrilation with all of this is it is the tonsills that run the overproduction of lymph cells that would cause some of these auto immune symptoms. DO you happen to have huge tonsills. ?how many people who had there tonsills removed have any autoimmune issues? (I bet not many) all very interesting questions.
Parent comment
I developed this "red ear syndrome" about 6 years ago, a month or so after returning from a mountain climbing trip to Mt.Rainier and Mt.Baker in August. It began as a hot, flushed, burning sensation on the left side of my face and forearm as I was driving home form work about 3-4pm. I thought it was just the sun shining through my car window. Next it would occur in the afternoon when I was at the gym and it was then that I noticed in the mirror how red my ear was. I am a nurse anesthetist so I immediately began to record my symptoms and when they occurred and I was also able to measure that the local skin temperature does increase when the flushing begins suggesting that this is some sort of neurovascular syndrome. I asked several surgeons about it and no one had a clue. I saw my Interal Med. MD who ran every test known to man. Then I saw a neurologist and a rhuematologist, both of which had no clue what this might be or any suggestions. The frequency of occurance and the intensity of my symptoms progressed over about 6 months to include burning along my left lateral thigh, calf and the sole of my foot. Eventually it spread to the right side but the flushing/ burning occurs only on one side at a time and only rarely on the right side. I can no longer wear socks or a hat because they are always burning to some degree and I feel as if I am overheating and might faint. The burning does not follow any nerve dermatone zones and does not appear to be linked to stress levels, alcohol intake, weather, but it does seem to occur more in the fall/winter for me and in the afternoon or night hours. But I live in SC so it might just be so hot that I don't actually notice the burning as much during the warmer months. After about a year my symptoms and flushing episodes sort of leveled off and have been stable ever since. The scary part is that I returned to Mt. Baker and Rainier the next fall with some friends and about a month after our return my climbing partner (Mark) and another friend (Pat) developed the same syndrome!!!!! We were all negative for Lyme's disease (which was every MD's 1st bet) Sojourns, Relapsing Polychondritis, fibromyalgia, carcinoid syndrome, an assortment of autoimmune disorders. You name it, we all got tested and were negative plus we are all pretty much healthy otherwise. Pat and I work at the same hopital but the mountain trips are the only common link that the 3 of us share. We all had mild flu like symptoms after we summited and then developed knee joint pain and then the flushing started. Now we all have very dry mucus membranes, just in the nose and have nose bleeds. Our MD's settled on either a chemical or biological toxic exposure (perhaps from melting snow for water) that produced some sort of neurological damage that also involves the vascular system and may involves the sympathetic nervous sytem. But if any of you out there have any thing similar to what we have then the Mountain trips can not be the causal link. Some one needs to start compiling a data base of symptoms and the onset and patterns of occurance. Pat (also a nurse with a PhD in Public Health) and I might be interested in developing a web site that would have persons with this syndrome complete a questionaire/assessment tool to be used to gather data and look for a common link. We are trying to pitch this idea to our Internal Med. Docs and maybe the local university public health department. It would be great to include a university that has a program in epideminology. If anybody out there has symptoms similar to ours or if you are interested in helping us try to launch this "data collection" project, please reply. Thanks