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DS13 got conflicting Lymes Disease test results — HELP!


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ELISA result was positive, Western Blot was negative — DS's doctor even called Tricore to confirm the results and was told (by the lab manager or director or something), that the results were "completely normal" and unequivocally negative.

 

The backstory:

For the last six months, DS has had a severely swollen knee, with no known injury. He has also been very tired, and more than usually anxious and moody, more than usual difficulty concentrating. He's also been having panic attacks at night, maybe 2-3 times/month. However, he's also going through puberty and has had a HUGE growth spurt (currently 6' tall at 13!), so those symptoms could indicate Lymes or just hormonal changes.

 

We live in a zero-Lyme state, and the last time we were in a Lyme area was almost 2 years ago, when we were in rural eastern PA and NJ. So if he did have Lymes, it would have been contracted almost 2 years ago. From what I've read, this fits with the swollen knee, as it often takes that long to get to the stage where joints are involved.

 

I know how critical it is to get treatment going if he has Lymes (especially since the dr is now saying the swollen knee is arthritis, and treatment may involve steroids, which would be a disaster if he does have untreated Lymes). However, the doctor won't treat him for Lymes because he says the tests show that he absolutely, positively, does not have Lymes.

 

So... can you get a false positive on ELISA or a false negative on Western Blot??? Is there a more sensitive test I can ask for? Can anyone point me to research on the rate of false negatives on Western blot? Instead of being relieved by the negative WB result, I'm more worried than ever because not having answers seems so much worse than having a "bad" answer. :(

 

Jackie

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So... can you get a false positive on ELISA or a false negative on Western Blot??? Is there a more sensitive test I can ask for? Can anyone point me to research on the rate of false negatives on Western blot? Instead of being relieved by the negative WB result, I'm more worried than ever because not having answers seems so much worse than having a "bad" answer. :(

 

Jackie

 

A positive result with an ELISA test would require confirmation with a Western blot test, because the Western Blot test is far more accurate. Generally, if the Western Blot test comes back negative, it is assumed that the person doesn't have Lyme, and no further testing is ordered.

 

That said, if you strongly suspect Lyme Disease, see if you can get the doctor to prescribe a 30 day course of doxycyclene, so you can see if your ds's symptoms improve.

 

Additionally, a positive ELISA result could indicate that an infection other than Lyme is present in your ds's body, because as I understand it, certain infections can mimic Lyme in the blood. The Western Blot will differentiate more accurately, so the test for Lyme will be negative, but that doesn't mean that no infection is present, just that no Lyme is present. You may want to speak with your doctor about which infections can cause a positive ELISA result, as it may help you narrow down what's going on with your ds. (A positive ELISA result doesn't necessarily mean there is another infection, but it is an indicator that there might be one.)

 

Overall, "no Lyme" is a good thing -- and believe me, I know from personal experience.

Edited by Catwoman
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Get another western blot and ask to see the results yourself. There may be positive bars....and a bad diagnosis. My ds went for a long time without a positive Lyme test, yet he had Lyme. It caused him to be bedridden for 5 months, he lost his friends, he fell behind academically, And 2 years later, we are finally seeing progress.

 

 

Please, get another test....or insist on 28 days of doxycycline before trying any steroids.

 

 

Faithe

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Get another western blot and ask to see the results yourself. There may be positive bars....and a bad diagnosis. My ds went for a long time without a positive Lyme test, yet he had Lyme. It caused him to be bedridden for 5 months, he lost his friends, he fell behind academically, And 2 years later, we are finally seeing progress.

 

 

Please, get another test....or insist on 28 days of doxycycline before trying any steroids.

 

How was he finally diagnosed? Did the Western blot finally come back positive, or did you use a different lab?

 

I've been reading everything I can find since I spoke to the doctor today, and I've seen references to the IgeneX lab as being more accurate. Maybe I can see if our ped will order that, despite the specialist telling her that I'm "unnecessarily worried." :glare:

 

Jackie

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Get another western blot and ask to see the results yourself. There may be positive bars....and a bad diagnosis. My ds went for a long time without a positive Lyme test, yet he had Lyme. It caused him to be bedridden for 5 months, he lost his friends, he fell behind academically, And 2 years later, we are finally seeing progress.

 

 

Please, get another test....or insist on 28 days of doxycycline before trying any steroids.

 

 

Faithe

 

How was he finally diagnosed? Did the Western blot finally come back positive, or did you use a different lab?

 

I've been reading everything I can find since I spoke to the doctor today, and I've seen references to the IgeneX lab as being more accurate. Maybe I can see if our ped will order that, despite the specialist telling her that I'm "unnecessarily worried." :glare:

 

Jackie

 

I totally agree with Faithe!!!!!

 

And, stand your ground!!!! Find another specialist is the one you are using thinks you are unnecessarily worried. My dd31 will be starting year 9 of an undiagnosed lyme nightmare -- it is only the past 2 or 3 years that we are seeing improvement. Trust your instincts and don't let anyone talk you out of what you want to do.:grouphug:

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I read (on this website) that sometimes false negatives occur on the Western blot if the blood sample has been sitting around for a few days, which would definitely have been the case with DS. The doc drew blood last Thursday, got the ELISA results from Tricore on Monday, and then Tricore ran the Western blot, and we got those results today.

 

So I'm thinking I need to find someone who's willing to do another blood draw and overnight it to IgeneX — has anyone done that and gotten different results?

 

Those of you who had negative tests that eventually turned positive, what made the difference?

 

Jackie

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There really is no reliable testing for lyme. It is a clinical diagnosis based on symptoms and response to treatment. I would see if you can get your son on a round of doxycycline like someone else suggested for at least 6 weeks. If he has lyme, and you are lucky, it will greatly increase his symptoms at first and then you will have your answer.

 

I also know with myself, I began by having problems with the joints in both of my ankles, then it moved to my knees, wrists, shoulders and then into my neck. I couldn't turn my neck at all. I got to where I could hardly walk. Then I began having cognitive issues. This happened over a six month period while I was trying to ignore my symptoms. If he has chronic lyme, I believe you will continue to see a progression of symptoms.

 

Lisa

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I read (on this website) that sometimes false negatives occur on the Western blot if the blood sample has been sitting around for a few days, which would definitely have been the case with DS. The doc drew blood last Thursday, got the ELISA results from Tricore on Monday, and then Tricore ran the Western blot, and we got those results today.

 

So I'm thinking I need to find someone who's willing to do another blood draw and overnight it to IgeneX — has anyone done that and gotten different results?

 

Those of you who had negative tests that eventually turned positive, what made the difference?

 

Jackie

 

Jackie, while I'm not convinced your ds has Lyme Diseae, I think the wisest thing you can do right now is to insist on the course of doxycyclene -- it's a very strong antibiotic, but is the best treatment for Lyme Disease -- and then worry about repeating the Western Blot. The most important thing right now, if you really suspect Lyme, is to get your ds started on the antibiotics. Don't wait for another set of test results. If you want to repeat the same test immediately, I definitely wouldn't discourage it, but the priority is getting the prescription.

 

Realistically, even if it's not Lyme, but your ds has a different type of infection, the doxycyclene might be helpful in fighting it -- I remember that when I was on doxycyclene for Lyme over the years, I never got sick. I am prone to nasty throat and sinus infections, and those pills kept me infection-free. So your ds may respond well to the doxycyclene even if he doesn't have Lyme.

 

If your doctor won't work with you to try the medication and see if it works for your ds, I would get a new doctor. My doctor is wonderful with Lyme Disease, but my parents' doctor essentially believed it didn't really exist (and it is very prevalent in our area, so it's not like he shouldn't have known better,) and if someone had it, he'd give them an antibiotic cream and call them cured. (It didn't work at all, BTW. :glare:) So it's very important to find the right doctor -- because even if it turns out not to be Lyme, you need someone who can think outside the box and try to add up your ds's symptoms to find the right diagnosis and treatment.

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From what I know of Lyme testing in the vet field, the Elisa looks for reactions to "chunks' of protiens, that are found in the Lyme organism, but also in other things. So it can come up positive even if there isn't Lyme. The Western Blot is much more specific.

http://www.canlyme.com/wb.html

Has he had any other signs of an infection, other than the knee? Fevers or such?

Edited by ktgrok
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So it's very important to find the right doctor -- because even if it turns out not to be Lyme, you need someone who can think outside the box and try to add up your ds's symptoms to find the right diagnosis and treatment.

We've spent 6 months going to specialists and having all kinds of tests, and everyone except this doctor (pediatric rheumatologist) has just shrugged and said "probably Idiopathic Juvenile Arthritis" — i.e., he's a child with a swollen joint and no one knows why. :glare: And now that the Western blot came back negative, even the rheumatologist is just shrugging and saying that. He told me to give DS 600 mg/day of ibuprofen and see what happens. Well, we already tried that — along with alternating ice and heat (no effect) and aspiration of the fluid (it came right back).

 

I'm going to call the pediatrician in the morning and try to get an appt with her, but I don't think she's likely to prescribe 6 weeks of antibiotics for a kid who, "according to the tests," has nothing wrong with him. We're in a state that doesn't have Lymes (and isn't even anywhere near a state that does), and nobody here seems to know anything about it. It took 6 months to get a doc who even thought about testing for it, even though I now know that swollen knees in boys who have no other sign of injury, is considered a red flag for Lymes back east. DH talked to a friend of his tonight, who has had Lymes for several years and she said she still hasn't found a single doctor here that "gets it" — she travels to NY to see a specialist there.

 

Has he had any other signs of an infection, other than the knee? Fevers or such?

There was never a rash, but looking back, the fall after he would have been exposed, he did have flu-type symptoms, and I remember him having swollen glands or nodes on one side of his neck, but it was at a time like the Wednesday before Thanksgiving, or some other time that we couldn't get in to see the doctor for days, and by then it had gone away, so I just assumed it was a response to whatever bug he had. For the last year he's been increasingly tired, spacey, and anxious, has trouble sleeping, and has been having panic attacks from time to time. Again, all these things, taken one by one, can seem "normal" for a kid (who is already spacey & anxious) going through puberty.

 

Since his knee swelled up last September, though, all those symptoms have gotten worse, and in the last couple of weeks he's been complaining of being out of breath. A few nights ago he said it felt like someone was sitting on his chest and it made it hard to breathe. That was the night after we got the positive ELISA test and it completely freaked me out, because I know that can be a sign of cardiomyopathy. I brought that up with the rheumatologist today, and he just said it wasn't related since DS absolutely positively didn't have Lymes according to the Western blot result.

 

So this is the thing that's killing me... maybe he doesn't have Lymes, and all the symptoms are just hormonal craziness + juvenile arthritis or some other problem, or maybe he does have it and it just didn't show up on the Western blot. Obviously I'd rather be safe than sorry, because the disadvantages of 6 weeks of unnecessary antibiotics are far outweighed by the disadvantages of not treating Lymes. But I'm afraid I may have to fly across the country just to find a doc who will give me a stinkin' Rx. :(

 

Jackie

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So this is the thing that's killing me... maybe he doesn't have Lymes, and all the symptoms are just hormonal craziness + juvenile arthritis or some other problem, or maybe he does have it and it just didn't show up on the Western blot. Obviously I'd rather be safe than sorry, because the disadvantages of 6 weeks of unnecessary antibiotics are far outweighed by the disadvantages of not treating Lymes. But I'm afraid I may have to fly across the country just to find a doc who will give me a stinkin' Rx. :(

 

Jackie

 

:grouphug::grouphug::grouphug:

 

Don't ask for a 6-week course; 30 days is the usual course, and doxycyclene is tough stuff, so you don't want your ds to take any more of it than is necessary. After the 30 days, he would need another Western Blot test, to see what his levels are. If he has Lyme, it will still show up in 30 days, so you'll know whether or not you're treating the right thing, although hopefully the medication will be working and his levels will be very low.

 

If the doctor refuses, be sure to mention the past symptoms and let her know that they are consistent with Lyme Disease. If she adamantly refuses to give you the prescription, you should demand that she repeat the Western Blot test immediately, because you won't have peace of mind until you get a second set of negative results. (If it comes back negative again, I think you can put your mind at ease about the Lyme.)

 

If she won't give you a prescription, while you wait for the second test results, I would start looking for another doctor who is experienced with Lyme, in case the new results come back positive, so you can be sure your ds is treated appropriately.

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:grouphug::grouphug::grouphug:

 

Don't ask for a 6-week course; 30 days is the usual course, and doxycyclene is tough stuff, so you don't want your ds to take any more of it than is necessary. After the 30 days, he would need another Western Blot test, to see what his levels are. If he has Lyme, it will still show up in 30 days, so you'll know whether or not you're treating the right thing, although hopefully the medication will be working and his levels will be very low.

 

Of course, after being on antibiotics for 30 days the borrelia will be in hiding out in cyst form which can give you a false negative blood test. Many things can cause a false negative and people go on suffering. The borrelia life cycle is much longer than some bacteria so even a 30-day antibiotic run may not be enough. (And I am very skittish about antibiotics.)

 

A live blood cell analysis is the only thing I have heard that is close to accurate. But then you would have to be able to catch the bacteria actually in the blood stream and not hiding in the collagen, etc. So even a live blood cell analysis with no spirochetes is not 100% assurance you do not have Lyme.

 

A friend actually saw a live blood analysis where you couldn't see the bacteria in the cell until the cell was crushed. Then you could see them.

Edited by HiddenJewel
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We've spent 6 months going to specialists and having all kinds of tests, and everyone except this doctor (pediatric rheumatologist) has just shrugged and said "probably Idiopathic Juvenile Arthritis" — i.e., he's a child with a swollen joint and no one knows why. :glare: And now that the Western blot came back negative, even the rheumatologist is just shrugging and saying that. He told me to give DS 600 mg/day of ibuprofen and see what happens. Well, we already tried that — along with alternating ice and heat (no effect) and aspiration of the fluid (it came right back).

 

I'm going to call the pediatrician in the morning and try to get an appt with her, but I don't think she's likely to prescribe 6 weeks of antibiotics for a kid who, "according to the tests," has nothing wrong with him. We're in a state that doesn't have Lymes (and isn't even anywhere near a state that does), and nobody here seems to know anything about it. It took 6 months to get a doc who even thought about testing for it, even though I now know that swollen knees in boys who have no other sign of injury, is considered a red flag for Lymes back east. DH talked to a friend of his tonight, who has had Lymes for several years and she said she still hasn't found a single doctor here that "gets it" — she travels to NY to see a specialist there.

 

 

There was never a rash, but looking back, the fall after he would have been exposed, he did have flu-type symptoms, and I remember him having swollen glands or nodes on one side of his neck, but it was at a time like the Wednesday before Thanksgiving, or some other time that we couldn't get in to see the doctor for days, and by then it had gone away, so I just assumed it was a response to whatever bug he had. For the last year he's been increasingly tired, spacey, and anxious, has trouble sleeping, and has been having panic attacks from time to time. Again, all these things, taken one by one, can seem "normal" for a kid (who is already spacey & anxious) going through puberty.

 

Since his knee swelled up last September, though, all those symptoms have gotten worse, and in the last couple of weeks he's been complaining of being out of breath. A few nights ago he said it felt like someone was sitting on his chest and it made it hard to breathe. That was the night after we got the positive ELISA test and it completely freaked me out, because I know that can be a sign of cardiomyopathy. I brought that up with the rheumatologist today, and he just said it wasn't related since DS absolutely positively didn't have Lymes according to the Western blot result.

 

So this is the thing that's killing me... maybe he doesn't have Lymes, and all the symptoms are just hormonal craziness + juvenile arthritis or some other problem, or maybe he does have it and it just didn't show up on the Western blot. Obviously I'd rather be safe than sorry, because the disadvantages of 6 weeks of unnecessary antibiotics are far outweighed by the disadvantages of not treating Lymes. But I'm afraid I may have to fly across the country just to find a doc who will give me a stinkin' Rx. :(

 

Jackie

 

Jackie -

 

I'm so sorry! :grouphug: It is very difficult and expensive to find doctors who will treat for lyme, though there has been a huge outbreak in our area (Virginia) so there more doctors becoming available.

 

Your son may not have lyme, but if you want to pursue that further, try googling "lyme literate MD" and see if there is one remotely close to you that you could see.

 

Also, it is not at all unusual to not have a rash or remember a tick bite. The ticks are so small they are difficult to find even if you are looking for them.

 

Lisa

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:grouphug::grouphug::grouphug:

 

Don't ask for a 6-week course; 30 days is the usual course, and doxycyclene is tough stuff, so you don't want your ds to take any more of it than is necessary. After the 30 days, he would need another Western Blot test, to see what his levels are. If he has Lyme, it will still show up in 30 days, so you'll know whether or not you're treating the right thing, although hopefully the medication will be working and his levels will be very low.

 

If the doctor refuses, be sure to mention the past symptoms and let her know that they are consistent with Lyme Disease. If she adamantly refuses to give you the prescription, you should demand that she repeat the Western Blot test immediately, because you won't have peace of mind until you get a second set of negative results. (If it comes back negative again, I think you can put your mind at ease about the Lyme.)

 

If she won't give you a prescription, while you wait for the second test results, I would start looking for another doctor who is experienced with Lyme, in case the new results come back positive, so you can be sure your ds is treated appropriately.

 

The documentary Under Our Skin is available for instant streaming on Netflix. They do a better job of explaining why a minimum of 6 weeks of antibiotics is necessary than I can right now. That, I believe, would be for a recent exposure. If he has had this for a while, it will likely take more than 6 weeks of treatment. I think if the OP can even get 2 weeks of antiobiotics, it might be helpful because her son may react quite strongly to them IF he has lyme.

 

Lisa

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Make sure the physician ordered an IgG Western Blot and not an IgM Western Blot since your son has had symptoms for over 30 days.

 

You mentioned that physicians have said your son has juvenile arthritis. What tests has he had done to confirm this?

 

Were any tests done when he had his knee aspirated?

 

There are a ton of things which cause an isolated swollen joint. Have you googled "monoarthritis" to see if other causes meet your son's symptoms?

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Here is a list of reasons why the western blot may be seronegative

http://www.anapsid.org/lyme/lymeseroneg.html

Commercial labs will mark a western blot negative if it is not CDC positive.

This doesn't necessarily mean that your dc doesn't have Lyme.

This is an excellent article about the bands and what they mean.

http://www.oocities.org/hotsprings/oasis/6455/western-blot.txt

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Jackie, while I'm not convinced your ds has Lyme Diseae, I think the wisest thing you can do right now is to insist on the course of doxycyclene -- it's a very strong antibiotic, but is the best treatment for Lyme Disease -- and then worry about repeating the Western Blot. The most important thing right now, if you really suspect Lyme, is to get your ds started on the antibiotics. Don't wait for another set of test results. If you want to repeat the same test immediately, I definitely wouldn't discourage it, but the priority is getting the prescription.

 

Realistically, even if it's not Lyme, but your ds has a different type of infection, the doxycyclene might be helpful in fighting it -- I remember that when I was on doxycyclene for Lyme over the years, I never got sick. I am prone to nasty throat and sinus infections, and those pills kept me infection-free. So your ds may respond well to the doxycyclene even if he doesn't have Lyme.

 

If your doctor won't work with you to try the medication and see if it works for your ds, I would get a new doctor. My doctor is wonderful with Lyme Disease, but my parents' doctor essentially believed it didn't really exist (and it is very prevalent in our area, so it's not like he shouldn't have known better,) and if someone had it, he'd give them an antibiotic cream and call them cured. (It didn't work at all, BTW. :glare:) So it's very important to find the right doctor -- because even if it turns out not to be Lyme, you need someone who can think outside the box and try to add up your ds's symptoms to find the right diagnosis and treatment.

 

:iagree::iagree:

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The documentary Under Our Skin is available for instant streaming on Netflix. They do a better job of explaining why a minimum of 6 weeks of antibiotics is necessary than I can right now. That, I believe, would be for a recent exposure. If he has had this for a while, it will likely take more than 6 weeks of treatment. I think if the OP can even get 2 weeks of antiobiotics, it might be helpful because her son may react quite strongly to them IF he has lyme.

 

Lisa

 

Sorry if I wasn't clear in my post -- I don't think a 4 week (or even a 6 week) course of antibiotics would be enough to be fully effective on chronic Lyme (sadly, I know that from personal experience;) I suggested the 30 day course because it seems to be the "standard" prescription, and because Corraleno's doctor is already convinced that her ds doesn't have Lyme, I thought it would be wiser not to ask for too much right away because the doctor might reject the notion right off the bat. Also, there is a good chance that her ds doesn't have Lyme, and I don't know that it's a great idea to give the kid 6 weeks worth of doxycyclene if he doesn't really need it.

 

My thinking was that her ds should notice some improvement within 30 days if he has Lyme Disease (or a different infection that responds to the same antibiotic,) and at that point, she would have an easier time getting a longer prescription if he needs it, as well as additional follow-up testing.

 

I think the biggest priority is to get him started on the medication, and if possible, to get him re-tested now and then again in 3-4 weeks.

 

It's so frustrating when doctors won't listen.

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Of course, after being on antibiotics for 30 days the borrelia will be in hiding out in cyst form which can give you a false negative blood test. Many things can cause a false negative and people go on suffering. The borrelia life cycle is much longer than some bacteria so even a 30-day antibiotic run may not be enough. (And I am very skittish about antibiotics.)

 

A live blood cell analysis is the only thing I have heard that is close to accurate. But then you would have to be able to catch the bacteria actually in the blood stream and not hiding in the collagen, etc. So even a live blood cell analysis with no spirochetes is not 100% assurance you do not have Lyme.

 

A friend actually saw a live blood analysis where you couldn't see the bacteria in the cell until the cell was crushed. Then you could see them.

 

Thanks for the explanation -- I have never seen a live blood analysis, and I didn't realize that the bacteria would be able to hide like that. (I'm not an expert on the mechanics of the Lyme testing, so this info is very interesting to me.)

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Sorry if I wasn't clear in my post -- I don't think a 4 week (or even a 6 week) course of antibiotics would be enough to be fully effective on chronic Lyme (sadly, I know that from personal experience;) I suggested the 30 day course because it seems to be the "standard" prescription, and because Corraleno's doctor is already convinced that her ds doesn't have Lyme, I thought it would be wiser not to ask for too much right away because the doctor might reject the notion right off the bat. Also, there is a good chance that her ds doesn't have Lyme, and I don't know that it's a great idea to give the kid 6 weeks worth of doxycyclene if he doesn't really need it.

 

My thinking was that her ds should notice some improvement within 30 days if he has Lyme Disease (or a different infection that responds to the same antibiotic,) and at that point, she would have an easier time getting a longer prescription if he needs it, as well as additional follow-up testing.

 

I think the biggest priority is to get him started on the medication, and if possible, to get him re-tested now and then again in 3-4 weeks.

 

It's so frustrating when doctors won't listen.

 

Oh, I see now. I agree that just getting him on the doxy may at least give the OP some idea of what path she should take.

 

lisa

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Thanks for the explanation -- I have never seen a live blood analysis, and I didn't realize that the bacteria would be able to hide like that. (I'm not an expert on the mechanics of the Lyme testing, so this info is very interesting to me.)

 

That is one very hard thing about treating Lyme. My overall layman's description is that it can go pretty much anywhere and do about anything it wants in your system. And it is a master of shutting down your immune system. So fighting it is really difficult unless you can overpower it and get your immune system working again.

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That is one very hard thing about treating Lyme. My overall layman's description is that it can go pretty much anywhere and do about anything it wants in your system. And it is a master of shutting down your immune system. So fighting it is really difficult unless you can overpower it and get your immune system working again.

 

 

This is so true!

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That is one very hard thing about treating Lyme. My overall layman's description is that it can go pretty much anywhere and do about anything it wants in your system. And it is a master of shutting down your immune system. So fighting it is really difficult unless you can overpower it and get your immune system working again.

 

I know exactly what you mean -- it's such nasty stuff, and the symptoms can be so strange that sometimes you think you're going crazy!

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