Aa
Does this sound like Lyme?
So I have been posting about this for a while, but I will post again. In August I started having tingling in my hands with every inhale. This progressed to being a constant thing and then began in my feet and would sometimes go up my leg. This varies in severity and is usually not painful but VERY annoying. Most recently this has become very noticeable in my lips and I get random stabbing pain in my eyes,face and tongue. My mouth also feels weird. Kinda numb and tingly like when you eat MSG. This seemed to start at the same time as a virus back in August. Sometimes it feels like my neck/spine is trembling. I have had blood tests for thyroid, diabetes, and vitamin deficiencies, all normal. I am waiting on an MRI in December and also the results of evoked potentials. Any one have these symptoms? Insights? I am 23 and female.
I have recently started having tingling around my mouth and itching and burning....and itching kind of everywhere. This sounds like an allergic reaction to me....and maybe it is but I have never had it before. Anybody get this ever? I swear my symptoms are so bizarre I wonder if maybe I am just a mutant.
One of the odd things about Lyme is how differently it affects each person -- symptoms vary widely and over time. This also confuses the docs, unfortunately.
Lyme is a bacterial infection in the same family as syphilis, and both infections can and do hide in the body in areas of low blood flow (such as cartilage), where the immune system doesn't penetrate well to kill the bacteria. In addition, the 'Lyme' ticks often (about half the time) carry one or more other infections, including babesia, bartonella, and a few others, called as a group 'co-infections.' These infections require separate testing and treatment from Lyme. These aspects of Lyme are not well understood by many (even most) MDs, because the medical profession clings to the idea that Lyme is hard to get, easy to cure, and needs only a few weeks of doxycycline for a complete cure.
Lyme has spread rapidly in the last few decades, but the medical profession is slow to expand their understanding of the infections. Partly that is because everyone has a different presentation of symptoms. Some of us have 'brain fog' (neurological involvement making thinking slow and difficult at various levels), and some of more joint and muscle involvement.
All this is to respond to your questions above: activity or inactivity may affect each of us differently, numbness can come and go or never appear at all, and some of us are better in the morning and some in the evening ... and some just feel lousy all the time. I described how I felt as having a hangover and the flu at the same time, 24/7. Just lousy.
So don't try too hard to match your symptoms with anyone else's, because Lyme just doesn't play by those rules. Hence the confusion the docs are having dealing with Lyme. Back the old days, syphilis (Lyme's first cousin) was called 'the great imitator', because it looked to docs like so many different ailments. Well, the docs pretty much have syphilis nailed down now, but are still struggling with Lyme and its diagnosis and treatment.
Bottom line: however you feel is legitimate, and I wouldn't spend too much time trying to line up your symptoms with the lists docs put out. There is a huge amount of misunderstanding, partly (I think) because the medical profession is not particularly dealing with many new diseases these days. Ebola is an exception to the surety of the docs these days, and you can see how the docs and politicians and patients are all banging into the furniture in the dark trying to figure out what to do and what is true about Ebola -- and with Lyme.
So that's the long story of why not to spend too much energy trying to match your symptoms with anyone else's. And it also explains why the docs are so confused. The important thing is to find a doc who understands that there are many things not yet known, and new diseases popping up every so often, just like AIDS and Ebola and Lyme and others.
Finding an MD who understands this is the most important thing to do. Most every doc in the world thinks s/he has a handle on Lyme, but for many (maybe even most) docs, they don't know what they don't know, but modern medicine has the attitude that it's all figured out already: a couple weeks of doxy will fix you right up, and if you're not 100% after that, then you have 'post-Lyme syndrome', meaning the bacteria are dead, but your immune system is mistakenly continuing to act as though you are still infected.
So ... what's more logical: that you're still infected, or that your immune system doesn't know the party is over? That's the Lyme wars in a nutshell.
To answer your question: I would not focus too closely on specific symptoms day to day, but instead work with an open-minded doc who knows that Lyme and its co-infections often takes months (not days or weeks) to treat and cure, and there may be some stumbles along the way. Mother Nature, she is a trick witch.
Here's the rub: every doc thinks s/he understands Lyme properly, but many don't. How can you tell you have a doc who realllllly understands Lyme? If they are an ILADS member [International Lyme and Associated Diseases Society], that's a good sign, but there are some lousy docs who belong to ILADS --- there are no secret oaths or magic incantations to give a doc wisdom and an open mind, and Lyme continues to be studied and also continues to spread.
If you need help finding a different doc, you can email to
--- contact [at] ILADS [dot] org ---
and tell them where you are located ('near Dallas TX') and how far you can travel to see an LLMD, and ILADS can send you docs' names. That's no guarantee the doc knows what s/he is doing, but it's a good start.
Always keep an open mind and try to stay up to date with what's going on in the Lyme world (like you don't have anything else to do) or post here with a summary of what your doc is proposing, and we're happy to tell you what we think based on our own reading and experience, tho note that we are just patients like you and no one here (that I know of) is medically trained.
Some people will also say or write that Lyme cannot reallllly be cured and you will have it forever, but I don't believe that. I've been fully well for more than five years, as has a family member, so we are living proof, as are many others.
Let us know how we can help. I don't think you said where you are located, and in some states, the medical board is a lot crankier than in other states, so keep your antennae up. Best wishes, and keep us posted. Lyme can be kicked!
J.
Lyme is a bacterial infection in the same family as syphilis, and both infections can and do hide in the body in areas of low blood flow (such as cartilage), where the immune system doesn't penetrate well to kill the bacteria. In addition, the 'Lyme' ticks often (about half the time) carry one or more other infections, including babesia, bartonella, and a few others, called as a group 'co-infections.' These infections require separate testing and treatment from Lyme. These aspects of Lyme are not well understood by many (even most) MDs, because the medical profession clings to the idea that Lyme is hard to get, easy to cure, and needs only a few weeks of doxycycline for a complete cure.
Lyme has spread rapidly in the last few decades, but the medical profession is slow to expand their understanding of the infections. Partly that is because everyone has a different presentation of symptoms. Some of us have 'brain fog' (neurological involvement making thinking slow and difficult at various levels), and some of more joint and muscle involvement.
All this is to respond to your questions above: activity or inactivity may affect each of us differently, numbness can come and go or never appear at all, and some of us are better in the morning and some in the evening ... and some just feel lousy all the time. I described how I felt as having a hangover and the flu at the same time, 24/7. Just lousy.
So don't try too hard to match your symptoms with anyone else's, because Lyme just doesn't play by those rules. Hence the confusion the docs are having dealing with Lyme. Back the old days, syphilis (Lyme's first cousin) was called 'the great imitator', because it looked to docs like so many different ailments. Well, the docs pretty much have syphilis nailed down now, but are still struggling with Lyme and its diagnosis and treatment.
Bottom line: however you feel is legitimate, and I wouldn't spend too much time trying to line up your symptoms with the lists docs put out. There is a huge amount of misunderstanding, partly (I think) because the medical profession is not particularly dealing with many new diseases these days. Ebola is an exception to the surety of the docs these days, and you can see how the docs and politicians and patients are all banging into the furniture in the dark trying to figure out what to do and what is true about Ebola -- and with Lyme.
So that's the long story of why not to spend too much energy trying to match your symptoms with anyone else's. And it also explains why the docs are so confused. The important thing is to find a doc who understands that there are many things not yet known, and new diseases popping up every so often, just like AIDS and Ebola and Lyme and others.
Finding an MD who understands this is the most important thing to do. Most every doc in the world thinks s/he has a handle on Lyme, but for many (maybe even most) docs, they don't know what they don't know, but modern medicine has the attitude that it's all figured out already: a couple weeks of doxy will fix you right up, and if you're not 100% after that, then you have 'post-Lyme syndrome', meaning the bacteria are dead, but your immune system is mistakenly continuing to act as though you are still infected.
So ... what's more logical: that you're still infected, or that your immune system doesn't know the party is over? That's the Lyme wars in a nutshell.
To answer your question: I would not focus too closely on specific symptoms day to day, but instead work with an open-minded doc who knows that Lyme and its co-infections often takes months (not days or weeks) to treat and cure, and there may be some stumbles along the way. Mother Nature, she is a trick witch.
Here's the rub: every doc thinks s/he understands Lyme properly, but many don't. How can you tell you have a doc who realllllly understands Lyme? If they are an ILADS member [International Lyme and Associated Diseases Society], that's a good sign, but there are some lousy docs who belong to ILADS --- there are no secret oaths or magic incantations to give a doc wisdom and an open mind, and Lyme continues to be studied and also continues to spread.
If you need help finding a different doc, you can email to
--- contact [at] ILADS [dot] org ---
and tell them where you are located ('near Dallas TX') and how far you can travel to see an LLMD, and ILADS can send you docs' names. That's no guarantee the doc knows what s/he is doing, but it's a good start.
Always keep an open mind and try to stay up to date with what's going on in the Lyme world (like you don't have anything else to do) or post here with a summary of what your doc is proposing, and we're happy to tell you what we think based on our own reading and experience, tho note that we are just patients like you and no one here (that I know of) is medically trained.
Some people will also say or write that Lyme cannot reallllly be cured and you will have it forever, but I don't believe that. I've been fully well for more than five years, as has a family member, so we are living proof, as are many others.
Let us know how we can help. I don't think you said where you are located, and in some states, the medical board is a lot crankier than in other states, so keep your antennae up. Best wishes, and keep us posted. Lyme can be kicked!
J.
Thanks. Jackie. Did you find the more you where active the more your symptoms would come on? Went for a walk with one of the kids and felt the numbness intensify. Seems symptoms almost disappear at nite when I just sit around.
I just posted on this site an inquiry for data on interference between recently taken doxy and Lyme tests.
Even if no one here pipes up, be SURE to tell your doc(s) and the lab that you are or have been on abx, what you are taking and what dose. If they blow you off, I would ask why they are not concerned.
Even if no one here pipes up, be SURE to tell your doc(s) and the lab that you are or have been on abx, what you are taking and what dose. If they blow you off, I would ask why they are not concerned.
Word of caution:
Someone posted here in the last few weeks something that I had forgotten: if you are (or have recently been) on doxycycline before you get the Lyme tests done, the test results may not be accurate because of interference from the meds. Specifically, the tests may say 'no Lyme here' when really you do have it.
Whether that applies to both the usual ELISA/Western blot tests as well as the IGeneX tests, I don't know -- but I suspect it matters more if the tests are ELISA/Western blot.
I don't recall who posted that, but if you search here for 'suppress' or some other words to that effect, it's findable.
If your doc is truly an LLMD, s/he should know this, but there are lots of docs who call themselves Lyme specialists, but really still hold to the CDC/IDSA approaches and definitions.
Sorry not to be more help.
Someone posted here in the last few weeks something that I had forgotten: if you are (or have recently been) on doxycycline before you get the Lyme tests done, the test results may not be accurate because of interference from the meds. Specifically, the tests may say 'no Lyme here' when really you do have it.
Whether that applies to both the usual ELISA/Western blot tests as well as the IGeneX tests, I don't know -- but I suspect it matters more if the tests are ELISA/Western blot.
I don't recall who posted that, but if you search here for 'suppress' or some other words to that effect, it's findable.
If your doc is truly an LLMD, s/he should know this, but there are lots of docs who call themselves Lyme specialists, but really still hold to the CDC/IDSA approaches and definitions.
Sorry not to be more help.
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