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.
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.
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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.
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