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.
This is great information!
Would you consider reposting the substance of your response to Cassiehack as a new, separate post titled something like "Finding Lyme treatment in Canada" so that a search would pull up your post?
Thanks much -- J
Would you consider reposting the substance of your response to Cassiehack as a new, separate post titled something like "Finding Lyme treatment in Canada" so that a search would pull up your post?
Thanks much -- J
I too am in Canada - Ottawa, ON. I saw a LLMD in Plattsburgh NY, but am presently under treatment by a local LLND. Unless you live in BC where Naturopaths can write prescriptions, your only options are to go to a LLMD in the U.S. if you prefer to use antibiotic treatment, or a local Naturopath (if you prefer to use antimicrobial/supplements) who follows ILADS guidelines for Lyme disease treatment. There's a good Facebook site called "OHOH Canada" that you can get a lot of helpful info from including a list of ILADS trained and treating MDs and NDs. The MDs though are U.S. medical doctors as no MDs in Canada will treat Lyme disease with long term antibiotics (risk losing their license). Another great FB site is "Lyme Herbals - Cowden, Buhner, Jernigan, Byron White & more" should you decide to be treated by a Naturopath.
. All the best to you!
. All the best to you!
I'll send you a 'private message' (PM) through this site with some ideas ... if you look at the top of this page, the blue 'MedHelp' horizontal ribbon has several choices in it, including the one marked 'MY MEDHELP'. If there is a number next to it [ such as 'MY MEDHELP (1)' ], it means you have a private message waiting for you there that goes only between you and the person on this site who sent it to you -- no one else (except the MedHelp staff) has access to it.
That's where I send messages with things like suggested Lyme doc's names or comments on docs or whatever doesn't belong in the open here. Will send you one in a bit.
That's where I send messages with things like suggested Lyme doc's names or comments on docs or whatever doesn't belong in the open here. Will send you one in a bit.
Cassie hang in there. Thank you for your prayers! I will keep posting my journey. I feel it's important to supply information to anyone when it comes to a persons health. J.
Jackie, you sure your not a medical writer! LOL. You should be. By the way thanks for your time answering. I live on Long Island, N.Y. I left them an email ILADS. And didn't hear back. Almost a week ago. I'll try again now. I know I have to trust my own knowledge of how my body feels and keep pursuing an answer. I've left a message with Dr. To schedule Igenex test ASAP. I know I have to be a little more patient on this one, but my gut tells me I have a better chance to move fast. What 's your thoughts on mayo clinic. Have you ever heard of anyone over the years going to them? Just curious. I see the have an infectious disease area in Jacksonville. Thinking out loud. Jamie.
No, you're not a mutant. :) but remember that Lyme has many and varied symptoms due to the mix of co-infections with Lyme and with your own body chemistry and history. One size definitely doesn't fit all.
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.
Thanks Jackie, I do have a large file on all these test. Your right tho. Most are summary pages. I'm 5days on 200mg of doxy a day so far. Called my lymes dr. Yesterday to see if we can take the I genex. Test. Before the doxy ( 1 month) is over to keep getting info as we do treatment. Waiting to hear back.
So the only doctors I can find here to treat Lyme are naturopathic doctors, so I suppose that is the route I am going to take.
Just saw your post up above. I hear you. I'd be frustrated too. Here are some thoughts for you, not meant to frustrate you even more, but rather give other interpretations (and remember, I'm not a doc, just a Lyme survivor):
1 -- You say: "So just got back lymes test."
-- What lab did the test -- LabCorp? IGeneX? Another one?
-- What specifically does the test say?
-- What is the name of the test -- ELISA, Western blot, something else?
My doc always handed me a photocopy of all test results so we could look them over together, but not all docs do that -- however, if they don't give you a copy, ask for one, and be sure to say you would like copies of ALL pages, so they don't just give you a summary page.
I think by law that you are entitled -- and in any event, you paid for the tests and should get a copy. (Docs offices hate using up paper and toner. Too bad for them.)
Why get full copies? You may over time see a number of different docs, and they can see important data in the detailed test results that the summaries don't show. You paid for the tests; get your money's worth.
2 -- You say: "I know they checked for signs of Babesia and more bands all NEGATIVE."
Again, get a full copy and look for what lab, what was tested for specifically besides babesia, what were the results in detail? Which bands said what?
They should always give you full photocopies of ALL test results, not just a summary page. What says 'all clear' to a nonLyme doc can say entirely different things to an LLMD.
3 -- You say: "Also RA [rheumatoid arthritis] Doctor called and all her blood work came back negative."
Same questions: What lab, what was tested for, what are the results in detail? I would also for full, detailed copies of this as well, not just a summary page.
It's none of my business, so I apologize for being intrusive, but I remember all too well how hard to was to learn that Lyme is largely invisible to many docs, and a negative test seems entirely reasonable to docs who don't 'believe' in Lyme. They think they 'believe', but are too often operating from old and outmoded standards.
Also note that there are several different laboratory companies who process blood and other tests. Like everything else in the universe, some tests and some labs are better than others, and you need actual detailed results for your own files (and to show future docs), and to be able to gauge which labs did which tests.
Everybody has an opinion about whether BurgerKing or McDonald's make better burgers, and with docs, the same goes for lab work.
I'm not medically trained, but after going through Lyme and babesia myself and with a family member, I can look back and see the divide in the road that the nonLLMDs just don't acknowledge, and they ignore it entirely.
4 -- You say: "Next up is Tuesday 3rd neurologist , Wednesday vascular DR., and Thursday. MRI of spine"
I gather you are doing the whole line up of tests, which is good, because more data imo is always better and can rule out a bunch of possibilities.
-----------------------------------------------------------------------
Words of caution tho:
-- neurologists are not big believers in Lyme being a problem, but see it as a rare infection, hard to get, and not really much of a problem, easy to cure with a couple weeks of doxycycline;
-- an MRI may detect something useful to know, but to my non-medical understanding, would not diagnose or rule out Lyme: it's like looking for bananas in the washing machine: they won't be found there. If the docs are looking for something other than Lyme, then an MRI may be reasonable to do.
-- and I don't know what a 'vascular' doc would test for in relation to Lyme.
If you would like to share more data with us, we are glad to tell you what we would do. With all good wishes for your health --
1 -- You say: "So just got back lymes test."
-- What lab did the test -- LabCorp? IGeneX? Another one?
-- What specifically does the test say?
-- What is the name of the test -- ELISA, Western blot, something else?
My doc always handed me a photocopy of all test results so we could look them over together, but not all docs do that -- however, if they don't give you a copy, ask for one, and be sure to say you would like copies of ALL pages, so they don't just give you a summary page.
I think by law that you are entitled -- and in any event, you paid for the tests and should get a copy. (Docs offices hate using up paper and toner. Too bad for them.)
Why get full copies? You may over time see a number of different docs, and they can see important data in the detailed test results that the summaries don't show. You paid for the tests; get your money's worth.
2 -- You say: "I know they checked for signs of Babesia and more bands all NEGATIVE."
Again, get a full copy and look for what lab, what was tested for specifically besides babesia, what were the results in detail? Which bands said what?
They should always give you full photocopies of ALL test results, not just a summary page. What says 'all clear' to a nonLyme doc can say entirely different things to an LLMD.
3 -- You say: "Also RA [rheumatoid arthritis] Doctor called and all her blood work came back negative."
Same questions: What lab, what was tested for, what are the results in detail? I would also for full, detailed copies of this as well, not just a summary page.
It's none of my business, so I apologize for being intrusive, but I remember all too well how hard to was to learn that Lyme is largely invisible to many docs, and a negative test seems entirely reasonable to docs who don't 'believe' in Lyme. They think they 'believe', but are too often operating from old and outmoded standards.
Also note that there are several different laboratory companies who process blood and other tests. Like everything else in the universe, some tests and some labs are better than others, and you need actual detailed results for your own files (and to show future docs), and to be able to gauge which labs did which tests.
Everybody has an opinion about whether BurgerKing or McDonald's make better burgers, and with docs, the same goes for lab work.
I'm not medically trained, but after going through Lyme and babesia myself and with a family member, I can look back and see the divide in the road that the nonLLMDs just don't acknowledge, and they ignore it entirely.
4 -- You say: "Next up is Tuesday 3rd neurologist , Wednesday vascular DR., and Thursday. MRI of spine"
I gather you are doing the whole line up of tests, which is good, because more data imo is always better and can rule out a bunch of possibilities.
-----------------------------------------------------------------------
Words of caution tho:
-- neurologists are not big believers in Lyme being a problem, but see it as a rare infection, hard to get, and not really much of a problem, easy to cure with a couple weeks of doxycycline;
-- an MRI may detect something useful to know, but to my non-medical understanding, would not diagnose or rule out Lyme: it's like looking for bananas in the washing machine: they won't be found there. If the docs are looking for something other than Lyme, then an MRI may be reasonable to do.
-- and I don't know what a 'vascular' doc would test for in relation to Lyme.
If you would like to share more data with us, we are glad to tell you what we would do. With all good wishes for your health --
A couple more thoughts after re-reading above:
-- test results: if you are not already doing so, get and keep hardcopy of ALL your test results. What is negative or meaningless to one bunch of docs may instead tell a detailed story to a future Lyme docs. It's almost like nonLyme docs are colorblind, but Lyme is a rainbow of symptoms and reactions. Start now, collecting and putting into a binder all the test results. And every time you have another test, ask and insist on having a copy for yourself: "I just like having a copy to read over later when I am thinking about what the doctor has said. I'm sometimes forgetful" -- or some polite dodge. They are YOUR tests and it's YOUR health. These could be very meaningful later, and if you try in the future to get copies of everything, you may accidentally get the world's laziest file clerk who doesn't want to stand at the copy machine for hours and makes an executive decision to only copy SOME of your file.
-- autoimmunity: one of the errors nonLyme docs often make is assuming that Lyme patients have lupus or some other autoimmune disease. You mention above hoping that they test you for it. Test, yes, but I personally would NOT take any steroids or similar medications which suppress the immune system until I KNEW that I did not have Lyme. Autoimmune meds suppress the entire immune system, which is exactly the opposite of what should be done in a bacterial infection like Lyme. The immune system needs to be up and fighting, not suppressed.
-- magnesium -- consider taking magnesium (Mg) supplements. Lyme bacteria use up Mg in your body during their reproductive process, often leaving Lyme patients very low in Mg. Docs seldom check this, assuming that we all get all we need from our regular diet, but that doesn't happen when Lyme bacteria are slurping it up like crazy. I had one snotty (infectious disease) doc along the way tell me it was 'dangerous' to take Mg supplements, so I did some research, and it turns out that before anything bad would happen, I would get diarrhea from too much Mg. Diarrhea never happened; doc was a jerk.
Turns out, so I read as well, that the American diet is often deficient in Mg, so many of us may already be sub-par in that regard here. Mg is very soothing and is necessary in carrying electrical impulses from cell to cell and other important chores. I have been done with Lyme and Lyme treatment for about 7 years now, and I STILL take Mg everyday. You know how babies fall asleep after a full bottle of milk (or after breastfeeding)? It's partly being held in loving arms, partly a stomach full of warmth, and partly MAGNESIUM!
I did more reading after the appointment with Dr Snotty, and found that if I were to take too much Mg, I would get diarrhea before anything bad would happen, so if it happened, to then back off on the dose. I am a total lightweight when it comes to meds (I get a buzz off plain Tylenol), but I still now (years after Lyme) take Mg supplements twice a day with my other vits/supps, consuming a total of 433mg of magnesium per day, taken half in the evening, half in the morning. And I NEVER got diarrhea, and I do sleep like the proverbial baby.
Any variety of Mg ending in "-ate" is supposed to be most absorable: Mg citrate, aspartate, orotate, malate, etc. I am currently taking Mg malate from an online vitamin supplier that has good brands (don't go for the cheap stuff like Mg oxide). It works wonders for me, and I plan to keep taking it.
Lyme does not go away by itself, so be persistent in diagnosis and treatment. It's a battle well worth fighting. Keep us posted!
-- test results: if you are not already doing so, get and keep hardcopy of ALL your test results. What is negative or meaningless to one bunch of docs may instead tell a detailed story to a future Lyme docs. It's almost like nonLyme docs are colorblind, but Lyme is a rainbow of symptoms and reactions. Start now, collecting and putting into a binder all the test results. And every time you have another test, ask and insist on having a copy for yourself: "I just like having a copy to read over later when I am thinking about what the doctor has said. I'm sometimes forgetful" -- or some polite dodge. They are YOUR tests and it's YOUR health. These could be very meaningful later, and if you try in the future to get copies of everything, you may accidentally get the world's laziest file clerk who doesn't want to stand at the copy machine for hours and makes an executive decision to only copy SOME of your file.
-- autoimmunity: one of the errors nonLyme docs often make is assuming that Lyme patients have lupus or some other autoimmune disease. You mention above hoping that they test you for it. Test, yes, but I personally would NOT take any steroids or similar medications which suppress the immune system until I KNEW that I did not have Lyme. Autoimmune meds suppress the entire immune system, which is exactly the opposite of what should be done in a bacterial infection like Lyme. The immune system needs to be up and fighting, not suppressed.
-- magnesium -- consider taking magnesium (Mg) supplements. Lyme bacteria use up Mg in your body during their reproductive process, often leaving Lyme patients very low in Mg. Docs seldom check this, assuming that we all get all we need from our regular diet, but that doesn't happen when Lyme bacteria are slurping it up like crazy. I had one snotty (infectious disease) doc along the way tell me it was 'dangerous' to take Mg supplements, so I did some research, and it turns out that before anything bad would happen, I would get diarrhea from too much Mg. Diarrhea never happened; doc was a jerk.
Turns out, so I read as well, that the American diet is often deficient in Mg, so many of us may already be sub-par in that regard here. Mg is very soothing and is necessary in carrying electrical impulses from cell to cell and other important chores. I have been done with Lyme and Lyme treatment for about 7 years now, and I STILL take Mg everyday. You know how babies fall asleep after a full bottle of milk (or after breastfeeding)? It's partly being held in loving arms, partly a stomach full of warmth, and partly MAGNESIUM!
I did more reading after the appointment with Dr Snotty, and found that if I were to take too much Mg, I would get diarrhea before anything bad would happen, so if it happened, to then back off on the dose. I am a total lightweight when it comes to meds (I get a buzz off plain Tylenol), but I still now (years after Lyme) take Mg supplements twice a day with my other vits/supps, consuming a total of 433mg of magnesium per day, taken half in the evening, half in the morning. And I NEVER got diarrhea, and I do sleep like the proverbial baby.
Any variety of Mg ending in "-ate" is supposed to be most absorable: Mg citrate, aspartate, orotate, malate, etc. I am currently taking Mg malate from an online vitamin supplier that has good brands (don't go for the cheap stuff like Mg oxide). It works wonders for me, and I plan to keep taking it.
Lyme does not go away by itself, so be persistent in diagnosis and treatment. It's a battle well worth fighting. Keep us posted!
Hello So just got back lymes test. I know they checked for signs of Babesia and more bands all NEGATIVE. Funny...... Should be happy right? But very frustrated. Also RA Doctor called and all her blood work came back negative. Next up is Tuesday 3rd neurologist , Wednesday vascular DR., and Thursday. MRI of spine. Keep you posted. Jamie.
This is all oddly reassuring. I never had a rash or anything, but I spent an awful lot of time in the woods and have been bit 1000 times by various critters. I live in Canada and our healthcare system is a bit of a mess.
I went through an MRI and Nerve Conduction testing which all came back normal. I agree with Jackie that it's a good idea to rule things out!
I had all of those exact symptoms that you mentioned, along with damaged knee cartilage requiring surgery on both knees in one year. I'm on herbals under a LLND's care and along with that a low dose elavil each night for the nerve pain. It has started to subside. My neuropathy was bad and also included piriformis syndrome to the point where I really could not sit for more than 15 minutes at a time. It was very difficult. Good luck with getting treatment started. As the others on here I'm sure mentioned, find a LLMD or LLND!
I am not seeing in your profile or recent posts where you are located -- what state or area. That can make a big difference in how the doc approach a potential Lyme diagnosis. You comment above that 'our system here is not privatized' sounds like ... Canada? UK?
Despite a rocky start by the docs, it sounds like you are making progress in both diagnosis and treatment now. That's terrific! Keep us posted --
I suppose I will seek out a LLD, it might be hard though because our system here is not privatized.
Wow. I wish I could have received such thorough testing. I have to wait FOREVER to get an MRI. If that shows nothing nothing I hope they check me for autoimmune problems. I think the only way they will test me for lyme is after they tested everything else. If I get to that point I will then seek treatment for lyme. If I can't get an LLD I will have to find some alternative treatment.
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