Aa
Has anyone treated lymes despite negative test results?
I saw a new integrative Doctor who thinks I have lymes and wants to start treatment even though my labs are normal.
I was diagnosed with hypothyroidism at 19 and now at 25 it never improved despite different methods of treatment.
I have a high RA Factor and low immunity.
She believes it could be why I'm not improving and wants to see if it helps. But I'm afraid of the antibiotics. Have anyone started/have done treatment despite normal labs and no rash?? thanks
I was diagnosed with hypothyroidism at 19 and now at 25 it never improved despite different methods of treatment.
I have a high RA Factor and low immunity.
She believes it could be why I'm not improving and wants to see if it helps. But I'm afraid of the antibiotics. Have anyone started/have done treatment despite normal labs and no rash?? thanks
Would you be willing to share with us what your current diagnosis is (which infections) and what the names of the medications are that the doc prescribed?
The comment by the doc in your last sentence seems to have an ... unusual approach. Is s/he a specialist in Lyme? Point of view in the docs is a big factor in getting things sorted out, due to the different views held in the medical community about Lyme and its concurrent infections (such as babesia, ehrlichiosis, and some others).
I wouldn't worry about the remark about 'at your age' -- phooey! :)
Keep us posted on how you do -- take care, and don't give up! It took me 20 MDs before I was finally diagnosed and treated. That was a few years ago, and medicine has I think gotten more understanding of Lyme, but there are always those who didn't get the memo.
The comment by the doc in your last sentence seems to have an ... unusual approach. Is s/he a specialist in Lyme? Point of view in the docs is a big factor in getting things sorted out, due to the different views held in the medical community about Lyme and its concurrent infections (such as babesia, ehrlichiosis, and some others).
I wouldn't worry about the remark about 'at your age' -- phooey! :)
Keep us posted on how you do -- take care, and don't give up! It took me 20 MDs before I was finally diagnosed and treated. That was a few years ago, and medicine has I think gotten more understanding of Lyme, but there are always those who didn't get the memo.
I do have Lyme and other coinfections, which have been documented by blood tests. Even the Health Dept. called me about being positive for Rocky Mountain Spotted Fever.
Personally, I would not treat it as Lyme without some sort of collaborating evidence, such as other infections like RMSF, Babesia, Bartonella, ect. If I weren't so badly affected by this, I wouldnt treat mine. but would just work on strengthing my immune system.
But, that's just my opinion!
Personally, I would not treat it as Lyme without some sort of collaborating evidence, such as other infections like RMSF, Babesia, Bartonella, ect. If I weren't so badly affected by this, I wouldnt treat mine. but would just work on strengthing my immune system.
But, that's just my opinion!
1 Comments
I wish i knew all of this before buying all of the perscriptions and stuff from my Dr I have yet to take it because I've been debating/ I had two other infection EBV and another. I'm sorry, as I'm work now and don't know the complete name. I had one Dr tell me at my age with my immunity low, I can't really strengthen it , it just will get worse.
I searched online for commentary on CD57 and it seems to confirm my recollection that CD57 had been a hoped-for indicator that didn't work out.
Pages and pages of links to searches are on google, and the older posts (~10 years ago) were favorable, but as time goes by, the view of CD57 is that it has lost much of its hoped-for usefulness, and only because the accuracy and usefulness of the test is now better known through additional research and use over the years.
Pages and pages of links to searches are on google, and the older posts (~10 years ago) were favorable, but as time goes by, the view of CD57 is that it has lost much of its hoped-for usefulness, and only because the accuracy and usefulness of the test is now better known through additional research and use over the years.
Simple answer on my part. Yes . It is possible to have it and not show up on testing.
My Aunt tested negative, my mother positive, my brother and I also positive. My brother and I being born with it from my mother, it only took me 27 years to be diagnosed. Lol. My Aunt started treatment, a few months went by and she had her first herxheimer reaction (no fun) thankfully it was pretty mellow, but still no positive on her tests. She has been on treatment 4 years, no positive bands, but her CD57 and herxing still are affected and go on. I get tested every 3 months, sometimes the tests will come back and it won't show any bands, but 3 months after that, I have 2 out of 3 bands. The CD57 test is also another thing that my Dr goes by. The numbers drop and go up, drop and go up, even if the other tests show no bands.
My brother and I both personally have horrible immune systems, but my mother worked in nursing homes for many years with disease floating around and didn't get sick at all really.
My Aunt tested negative, my mother positive, my brother and I also positive. My brother and I being born with it from my mother, it only took me 27 years to be diagnosed. Lol. My Aunt started treatment, a few months went by and she had her first herxheimer reaction (no fun) thankfully it was pretty mellow, but still no positive on her tests. She has been on treatment 4 years, no positive bands, but her CD57 and herxing still are affected and go on. I get tested every 3 months, sometimes the tests will come back and it won't show any bands, but 3 months after that, I have 2 out of 3 bands. The CD57 test is also another thing that my Dr goes by. The numbers drop and go up, drop and go up, even if the other tests show no bands.
My brother and I both personally have horrible immune systems, but my mother worked in nursing homes for many years with disease floating around and didn't get sick at all really.
Sorry for the terrible late response.
You gave great info.
I'm in the process to get another opinion.
Does anyone know if Lyme can cause low immunity?
You gave great info.
I'm in the process to get another opinion.
Does anyone know if Lyme can cause low immunity?
You're quite welcome ... I just wish I could pull out my magic wand and make you well again NOW! Till we figure out how to do that, however, we'll keep kicking things around here and see what comes of it. :)
(If you see another post that looks a bit like this one from me, it would be that I thought I had responded but can't find the message I sent back to you. Oh well! Onward!)
Anyway, I just re-read your posts above, and tho I'm not an MD or a Lyme scientist of any kind at all, I would be thinking about getting a second opinion from a good [Lyme] doc. What makes me think that is how many things you mention about how you feel and what other infections you have had (Epstein-Barr virus; high RA [rheumatoid arthritis] factors; and whatever else is going on.
That's a lot of complexity, and it takes a wise doc to pull together the bits and pieces of all these ailments together. Lyme itself has a way of confusing the issues, and that may be part of what's going on.
Given how you continue to feel, I would (in your situation) do what you are doing: plowing ahead and figuring out what the heck is up.
If the doc who ran your PCR test is a Lyme specialist, it would be interesting to know what his views and opinions are, given that you feel lousy and have a history of several illnesses.
It's very difficult to try to piece all this together, given that your ailments span several different areas -- so having an even wiser doc than the others might be useful: someone who can see the big picture and not just the short lab results printed on a page or two.
It sure sounds from your recounting of the situation that there is *something* going on, but these docs haven't been able to piece it all together. I can't tell from your posts and log-in what part of the country you are in, but if you could post a message like "I'm 25 miles from Lexington KY" or something similar, that might help us here to come up with some ideas of what docs to look for.
I don't know much at all about RA [rheumatoid arthritis], but it's something to look into. The only question is what kind of doc would be the best one. You'll know when you've found an MD who can make sense of all this, and often it's due to the MD's insight into the patient's situation.
I'm NOT medically trained, but if I were in your situation, I would keep following up (as your are already doing) and keep plowing ahead. Please keep us posted! Bravo for you -- J
(If you see another post that looks a bit like this one from me, it would be that I thought I had responded but can't find the message I sent back to you. Oh well! Onward!)
Anyway, I just re-read your posts above, and tho I'm not an MD or a Lyme scientist of any kind at all, I would be thinking about getting a second opinion from a good [Lyme] doc. What makes me think that is how many things you mention about how you feel and what other infections you have had (Epstein-Barr virus; high RA [rheumatoid arthritis] factors; and whatever else is going on.
That's a lot of complexity, and it takes a wise doc to pull together the bits and pieces of all these ailments together. Lyme itself has a way of confusing the issues, and that may be part of what's going on.
Given how you continue to feel, I would (in your situation) do what you are doing: plowing ahead and figuring out what the heck is up.
If the doc who ran your PCR test is a Lyme specialist, it would be interesting to know what his views and opinions are, given that you feel lousy and have a history of several illnesses.
It's very difficult to try to piece all this together, given that your ailments span several different areas -- so having an even wiser doc than the others might be useful: someone who can see the big picture and not just the short lab results printed on a page or two.
It sure sounds from your recounting of the situation that there is *something* going on, but these docs haven't been able to piece it all together. I can't tell from your posts and log-in what part of the country you are in, but if you could post a message like "I'm 25 miles from Lexington KY" or something similar, that might help us here to come up with some ideas of what docs to look for.
I don't know much at all about RA [rheumatoid arthritis], but it's something to look into. The only question is what kind of doc would be the best one. You'll know when you've found an MD who can make sense of all this, and often it's due to the MD's insight into the patient's situation.
I'm NOT medically trained, but if I were in your situation, I would keep following up (as your are already doing) and keep plowing ahead. Please keep us posted! Bravo for you -- J
It sounds like your doc is quite thoughtful -- that's good!
There are quite a few (perhaps a dozen or more) infections that can occur in the same person at the same time, or over time, that were brought by 'Lyme' ticks. That's one of the mysteries of 'Lyme' and tickborne diseases generally.
If your MD is still working to figure out for sure what you have and how to best treat it, then I would stick with that doc for a while ... but always have in the back of one's mind that docs aren't perfect, and science and medicine are still bungling around when it comes to tickborne disease.
If your current doc is humble about how much s/he can figure out (as all MDs *should* be humble in the face of Mother Nature), then the doc sounds like a reasonable match to go forward at least for now, until more data is gathered and a treatment plan proposed by the doc. You will be lucky if your doc has a broad mind, but if the situation does not feel that way to you, then consider taking copies of all your test results and quietly taking them to another MD who has a different view about Lyme etc.
Lyme and its and henchmen are tricky beasts, so always keep in mind that your MDs are trying, but may not have all the pieces in the puzzle, given how new Lyme is in the world (not to mention Lyme's co-infections). You have what seems a complex set of infections and treatments, so be your own best lookout for whether to quietly go see another MD for a new look at your history and status. Some MDs are offended by a patient who goes for a second opinion, but imo a doc who is offended is not acting in the patient's best interests. Just sayin'.
You may want to get a quiet second opinion from another MD soon, without alerting your current doc that you are doing so. Your current doc seems to be thoughtful, but even thoughtful docs don't always see the big picture. I personally went through 20 MDs before one of them finally tested me for Lyme ... and it came back positive! What did that doc say to me then? "Oh, you could not possibly have Lyme. I have patients with Lyme, and they are all ... near death." Bah, humbug!
It so happened that I had an old friend who had had Lyme some years and miles away from where I live now, so I now knew enough about the possibility of Lyme, and booked myself into a well-known Lyme specialist for a work up. This new doc confirmed my Lyme diagnosis and also another infection (babesiosis) that 'Lyme' ticks sometimes also carry. This is similar to the winding road you seem to have had ... so I would encourage you to plow ahead, get copies of all test results, and find a good Lyme doc for a second opinion.
The complexity of your various ailments and conditions over time may be confusing your line up of docs, not because they are not wise or thoughtful, but because Lyme is still a developing disease that confuses many in the medical profession.
About the docs who say you need just antidepressants, they've done you a favor by making it clear that they are likely not the doc for you, y'know?
I would snoop around online and in your area to locate a Lyme specialist, by contacting ILADS for a referral to a Lyme doc near you. If the first one doesn't suit, then call back for another one. ... And *always* get full copies of all tests etc. from each doc you see: what seems unimportant to one doc may be seen by another doc as entirely different and very useful clues.
Part of your situation may be that you do indeed have a complex set of symptoms, and that may be why the various docs seem confused or simply narrow-minded. Patient groups near you may be very helpful to recommend a Lyme doc who is good at unraveling puzzles, and that's what you might just need. As mentioned, I saw 20 MDs before one finally (sort of) diagnosed me as having Lyme, saying "I would say you have Lyme disease, but you don't look sick enough to me."
About resistance to antibiotics: what is important is that you are properly tested and diagnosed (since different infections often need different medications, and Lyme often brings along bacterial friends who don't respond to antibiotics against Lyme).
Antibiotics need to be taken in certain doses for a stated period of time, but I hear people say sometimes, "Oh, I was feeling better so I stopped the antibiotics so I wouldn't get dependent on them." This is totally wrong. Stopping treatment too soon allows the bacteria to become resistant to the antibiotics, which makes killing the bacteria very difficult or impossible.
You say that you are 'afraid of becoming resistant to antibiotics when [you] really need it.' That's wholly *incorrect*, to my understanding, because resistance to antibiotics occurs NOT from TAKING the meds, but from failing to take them AS PRESCRIBED.
Why? Because a too-small dose of antibiotics allows the bacteria to learn how to ignore the antibiotics. This happens too often in medicine, and it causes big trouble for the rest of us too.
Note also that there are other strains of Lyme bacteria that are NOT caused by B.burgdorferi, thus confusing diagnosis and treatment.
Below are quotes from the [San Francisco, California] Bay Area Lyme Foundation [found online at BayAreaLyme[dot]org]:
----------------------------------------------------
[Bracketed asterisks below are mine for emphasis.]
"Lyme-like symptoms"
"B. miyamotoi is a relatively newly discovered tick-borne parasite related to the Lyme-causing Borrelia burgdorferi (Bb) bacteria, only recently linked to disease in humans.
"Infection by this bacteria tends to produce symptoms similar to Lyme disease, including fever, headache, fatigue, joint and muscle pain, loss of appetite, disorientation or memory loss, and lack of coordination, as well as more severe conditions of neurological disease.
"Borrelia miyamotoi appears to be a common co-infection with the Bb bacteria (see Other Tick-Borne Diseases for more information on co-infections). B. miyamotoi infrequently produces erythema migrans or skin rash so patients need to be alert to other symptoms.
"Common serological [blood] tests for Lyme do not detect the B. miyamotoi spirochete, and [*****]there is no commercially available test for B. miyamotoi as of yet [*****]. Treatment commonly prescribed for Lyme (antibiotics like doxycycline or amoxicillin) is thought to be effective combating B. miyamotoi, though the course and duration of treatment may vary."
-----------------------------------------------------------------------
So ... Lyme has tricks up its sleeves, so continuing to press ahead for accurate diagnosis and treatment is still important.
Given the complexity of your ailments and the length of time, I personally would consider consulting with another LLMD to have more than one point of view. You do not need to tell your current doc that you are seeing a second doc for confirmation, but do take copies of all your tests so far ... you know, the tests that you have copies of all your tests to date 'for your records.' :)
Take care, and plow ahead! Keep us posted.
There are quite a few (perhaps a dozen or more) infections that can occur in the same person at the same time, or over time, that were brought by 'Lyme' ticks. That's one of the mysteries of 'Lyme' and tickborne diseases generally.
If your MD is still working to figure out for sure what you have and how to best treat it, then I would stick with that doc for a while ... but always have in the back of one's mind that docs aren't perfect, and science and medicine are still bungling around when it comes to tickborne disease.
If your current doc is humble about how much s/he can figure out (as all MDs *should* be humble in the face of Mother Nature), then the doc sounds like a reasonable match to go forward at least for now, until more data is gathered and a treatment plan proposed by the doc. You will be lucky if your doc has a broad mind, but if the situation does not feel that way to you, then consider taking copies of all your test results and quietly taking them to another MD who has a different view about Lyme etc.
Lyme and its and henchmen are tricky beasts, so always keep in mind that your MDs are trying, but may not have all the pieces in the puzzle, given how new Lyme is in the world (not to mention Lyme's co-infections). You have what seems a complex set of infections and treatments, so be your own best lookout for whether to quietly go see another MD for a new look at your history and status. Some MDs are offended by a patient who goes for a second opinion, but imo a doc who is offended is not acting in the patient's best interests. Just sayin'.
You may want to get a quiet second opinion from another MD soon, without alerting your current doc that you are doing so. Your current doc seems to be thoughtful, but even thoughtful docs don't always see the big picture. I personally went through 20 MDs before one of them finally tested me for Lyme ... and it came back positive! What did that doc say to me then? "Oh, you could not possibly have Lyme. I have patients with Lyme, and they are all ... near death." Bah, humbug!
It so happened that I had an old friend who had had Lyme some years and miles away from where I live now, so I now knew enough about the possibility of Lyme, and booked myself into a well-known Lyme specialist for a work up. This new doc confirmed my Lyme diagnosis and also another infection (babesiosis) that 'Lyme' ticks sometimes also carry. This is similar to the winding road you seem to have had ... so I would encourage you to plow ahead, get copies of all test results, and find a good Lyme doc for a second opinion.
The complexity of your various ailments and conditions over time may be confusing your line up of docs, not because they are not wise or thoughtful, but because Lyme is still a developing disease that confuses many in the medical profession.
About the docs who say you need just antidepressants, they've done you a favor by making it clear that they are likely not the doc for you, y'know?
I would snoop around online and in your area to locate a Lyme specialist, by contacting ILADS for a referral to a Lyme doc near you. If the first one doesn't suit, then call back for another one. ... And *always* get full copies of all tests etc. from each doc you see: what seems unimportant to one doc may be seen by another doc as entirely different and very useful clues.
Part of your situation may be that you do indeed have a complex set of symptoms, and that may be why the various docs seem confused or simply narrow-minded. Patient groups near you may be very helpful to recommend a Lyme doc who is good at unraveling puzzles, and that's what you might just need. As mentioned, I saw 20 MDs before one finally (sort of) diagnosed me as having Lyme, saying "I would say you have Lyme disease, but you don't look sick enough to me."
About resistance to antibiotics: what is important is that you are properly tested and diagnosed (since different infections often need different medications, and Lyme often brings along bacterial friends who don't respond to antibiotics against Lyme).
Antibiotics need to be taken in certain doses for a stated period of time, but I hear people say sometimes, "Oh, I was feeling better so I stopped the antibiotics so I wouldn't get dependent on them." This is totally wrong. Stopping treatment too soon allows the bacteria to become resistant to the antibiotics, which makes killing the bacteria very difficult or impossible.
You say that you are 'afraid of becoming resistant to antibiotics when [you] really need it.' That's wholly *incorrect*, to my understanding, because resistance to antibiotics occurs NOT from TAKING the meds, but from failing to take them AS PRESCRIBED.
Why? Because a too-small dose of antibiotics allows the bacteria to learn how to ignore the antibiotics. This happens too often in medicine, and it causes big trouble for the rest of us too.
Note also that there are other strains of Lyme bacteria that are NOT caused by B.burgdorferi, thus confusing diagnosis and treatment.
Below are quotes from the [San Francisco, California] Bay Area Lyme Foundation [found online at BayAreaLyme[dot]org]:
----------------------------------------------------
[Bracketed asterisks below are mine for emphasis.]
"Lyme-like symptoms"
"B. miyamotoi is a relatively newly discovered tick-borne parasite related to the Lyme-causing Borrelia burgdorferi (Bb) bacteria, only recently linked to disease in humans.
"Infection by this bacteria tends to produce symptoms similar to Lyme disease, including fever, headache, fatigue, joint and muscle pain, loss of appetite, disorientation or memory loss, and lack of coordination, as well as more severe conditions of neurological disease.
"Borrelia miyamotoi appears to be a common co-infection with the Bb bacteria (see Other Tick-Borne Diseases for more information on co-infections). B. miyamotoi infrequently produces erythema migrans or skin rash so patients need to be alert to other symptoms.
"Common serological [blood] tests for Lyme do not detect the B. miyamotoi spirochete, and [*****]there is no commercially available test for B. miyamotoi as of yet [*****]. Treatment commonly prescribed for Lyme (antibiotics like doxycycline or amoxicillin) is thought to be effective combating B. miyamotoi, though the course and duration of treatment may vary."
-----------------------------------------------------------------------
So ... Lyme has tricks up its sleeves, so continuing to press ahead for accurate diagnosis and treatment is still important.
Given the complexity of your ailments and the length of time, I personally would consider consulting with another LLMD to have more than one point of view. You do not need to tell your current doc that you are seeing a second doc for confirmation, but do take copies of all your tests so far ... you know, the tests that you have copies of all your tests to date 'for your records.' :)
Take care, and plow ahead! Keep us posted.
Hey Jackie!! thanks so so much for your response
My Dr did a (B.burgdorferi) PCR test and it was negative
My immunity test came back low
I can't seem to feel better despite being on thyroid meds
It shows I also had a old case of EBV
I have an high RA factor as well
and just feel overall ill. I've been to Dr after Dr and all they'd say is I needed antidepressants.
I'm just afraid of becoming resistant to antibiotics when I really need it.
My Dr did a (B.burgdorferi) PCR test and it was negative
My immunity test came back low
I can't seem to feel better despite being on thyroid meds
It shows I also had a old case of EBV
I have an high RA factor as well
and just feel overall ill. I've been to Dr after Dr and all they'd say is I needed antidepressants.
I'm just afraid of becoming resistant to antibiotics when I really need it.
Greetings --
May I ask which 'labs are normal'? There are at least two commonly used Lyme-focused tests, one which is older and less reliable the longer you are infected, and the other which is quite different in its structure and may appear to be more reliable.
The first kind of test (called ELISA/Western blot) is older, and looks for your immune system reaction to the presence of antibodies made by your body against Lyme. The pitfall in that test is that Lyme can and does suppress your immune system, so that the test can come back negative ('no immune action against Lyme here!'), when your body really does have Lyme.
The second kind of test (called PCR, short for polymerase chain reaction) is not confused by the antibodies issue in ELISA/Western blot, so it is said to be a more reliable test.
(My Lyme doc used both, only because he wants as much data as possible and is an expert in the field.)
From what I have read, Lyme can affect the thyroid and other endocrine [hormonal] functions, so that could be a factor in your situation, hence your doc's suggestion.
I would not be afraid of antibiotics -- if they kill the Lyme bacteria, that can be a very good thing for you. You mention having 'normal labs' is unclear to me ... perhaps it means you have a negative Lyme test? Docs who don't really understand Lyme tend to overlook the side effects of Lyme on the endocrine system, so they may not see value in your current doc's approach.
In any event, I would not fear antibiotics. After a long period of time, I understand that Lyme burrows in and many not show many indications of Lyme (like a rash), but that can be that Lyme is just hiding and causing quiet mischief.
Antibiotics work against bacterial infections, and Lyme is a bacterial infection. I never had a rash from Lyme, though I was ill for an extended period of time before finding out I had Lyme and babesiosis (a common traveler with Lyme).
Given your situation, I would be inclined to go with your MD's suggestions, after asking what side effects there could be from the treatment. I would guess the side effects are not huge, and getting ride of Lyme and its friends is well worth the attempt: Lyme doesn't just go away by itself.
Has your doc done a PCR test on you? 'Polymerase chain reaction' is what PCR stands for, and is good at finding Lyme infections in a way that the older tests often aren't, so I read.
I would not be afraid of the tests, but ask the doc if there is any downside to taking them. I'd bet lunch on the answer being 'no'. :)
Let us know how you do! Take care --
May I ask which 'labs are normal'? There are at least two commonly used Lyme-focused tests, one which is older and less reliable the longer you are infected, and the other which is quite different in its structure and may appear to be more reliable.
The first kind of test (called ELISA/Western blot) is older, and looks for your immune system reaction to the presence of antibodies made by your body against Lyme. The pitfall in that test is that Lyme can and does suppress your immune system, so that the test can come back negative ('no immune action against Lyme here!'), when your body really does have Lyme.
The second kind of test (called PCR, short for polymerase chain reaction) is not confused by the antibodies issue in ELISA/Western blot, so it is said to be a more reliable test.
(My Lyme doc used both, only because he wants as much data as possible and is an expert in the field.)
From what I have read, Lyme can affect the thyroid and other endocrine [hormonal] functions, so that could be a factor in your situation, hence your doc's suggestion.
I would not be afraid of antibiotics -- if they kill the Lyme bacteria, that can be a very good thing for you. You mention having 'normal labs' is unclear to me ... perhaps it means you have a negative Lyme test? Docs who don't really understand Lyme tend to overlook the side effects of Lyme on the endocrine system, so they may not see value in your current doc's approach.
In any event, I would not fear antibiotics. After a long period of time, I understand that Lyme burrows in and many not show many indications of Lyme (like a rash), but that can be that Lyme is just hiding and causing quiet mischief.
Antibiotics work against bacterial infections, and Lyme is a bacterial infection. I never had a rash from Lyme, though I was ill for an extended period of time before finding out I had Lyme and babesiosis (a common traveler with Lyme).
Given your situation, I would be inclined to go with your MD's suggestions, after asking what side effects there could be from the treatment. I would guess the side effects are not huge, and getting ride of Lyme and its friends is well worth the attempt: Lyme doesn't just go away by itself.
Has your doc done a PCR test on you? 'Polymerase chain reaction' is what PCR stands for, and is good at finding Lyme infections in a way that the older tests often aren't, so I read.
I would not be afraid of the tests, but ask the doc if there is any downside to taking them. I'd bet lunch on the answer being 'no'. :)
Let us know how you do! Take care --
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