Lyme Disease: CDC FAQs

[Eeyore]

If you think you really have Lyme, then I don't see why you hang around the boards. Just go get it cured and get on with your life.

If you're saying you've taken all the antibiotics that might possibly be considered worth trying, and you still have symptoms, but you cannot show you have Lyme by culture or PCR (only antibodies by blot/elisa), then I am very much unconvinced you have Lyme at all. That sounds like a post-Lyme syndrome to me.

Antibodies are lousy at distinguishing past from current infection. With some viruses, you know it's current, since the course is always lifelong (e.g. herpes viruses, probably hiv, etc.) With a bacteria that we know can, at least sometimes, be cleared (I think we all agree to that), the antibody test only shows exposure, not current infection. Lack of efficacy of antibiotics could be explained by resistance, but is more likely explained by lack of infection. Increasing titers do not show active infection or reactivation either. If you get a vaccine, you'll show increases in titers to everything. There have been studies done that showed you can treat HSV-1/2 infections by giving people repeated smallpox vaccines (obviously, a while ago!) - and that it lowers the rate of outbreaks. The viruses are unrelated - so it's not cross-reaction. Instead, it's a general phenomenon of immune activation to everything. It would similarly reduce the chances of getting shingles from latent VZV and even serve as a booster for other vaccines that might be wearing off. (Not a substitute for a true booster - the effect is not nearly as strong as a vaccine for the actual pathogen.)

The fact that chronic/post Lyme looks so much like ME suggests it's more of a final common pathway that alters the body's immune function in general rather than ongoing infection. If these were all ongoing infections, they'd all look different. HIV, HCV, untreated leprosy, and untreated syphilis, for example, do not look similar at all. Reactive arthritis, whether caused by enteric or chlamydial infection, looks the same long term. GBS, whether caused by campylobacter or CMV, also looks pretty much the same (and one of those is curable, whereas the other is lifelong). Chronicity of the inciting agent does not correlate with chronicity of the GBS.

 

[Antares in NYC]

Citations? Numbers?

No, I don't have numbers because the CDC doesn't measure these things. Yet, LLMDs treat people every day, and many do recover fully and successfully.

This is why antibiotics are used for treatment.

You don't say! That response wasn't condescending at all. Actually, your response it out of context; I was referring to the link between HLA-DR4 and chronic Lyme, the inability to produce T cells vs interferon gamma instead. Read the study.

The point is not that the lyme is persistent. It is. The issue is if you need to take an antibiotic on a long term basis to kill the persistent borellia.

So we are on the same page here. Not sure there's a disagreement. On the other hand, you are missing the point about the HLA-DR4 immune issue.

Anecdotes might have a place as far as generating a hypothesis but they can't be comaped to credible science based data/studies.

You mean the "credible science-based studies" used to justify the awful status quo for Lyme patients? Are you talking Dearborn?
Are the studies from Dr. Kim Lewis or Dr. Zhang not "credible science based studies"? How about Auewater himself, member of IDSA, which also supports the thesis of persistence? You seem quite selective about your sources.

I read about a patient who was treated for lyme and it turnrd out he had something else and susequently died. Does that mean my anecdote has the same weight as yours and they cancel each other.

That's very unfortunate. That said, more people receive false negatives for Lyme every single day than false positives. The official two tiered test misses over 50% of cases. Some standards.
How many people die of Lyme carditis for lack of diagnosis? Look it up.

In the study/video that was cited on the other thread by @Dolphin there were many samples from healthy people to an alternative lab and their blood tests were diagnosed as positive. There are big implications from this. In case anyone wants to watch it again:

http://globalnews.ca/video/2098060/explaining-the-mysteries-of-lyme-disease

You mean, as compared to the officially approved CDC tests which miss over 50% of positive cases, and wasn't supposed to be used for clinical diagnoses in the first place, but for metrics?

 

[duncan]

@barbc56 : "The issue is if you need to take an antibiotic on a long term basis to kill persistent borrelia."

That is an issue. Another would be if you can even cure borrelia after a certain point in some patients.

An additional issue would be whether different abx need to be combined.

Another is whether some cases require pulsing.

Another is whether long-term abx relieve suffering in some in a sustained or even intermittent basis.

Another is whether there is a significant difference in IV vs oral solutions after acute in NB.

There are more that push for attention on the abx treatment front (regardless of what label one slaps Bb with). It's late, though.

 

[Antares in NYC]

If you think you really have Lyme, then I don't see why you hang around the boards. Just go get it cured and get on with your life.

Just to make sure... are you referring to me?
Just wanted to make sure the invitation to leave these boards was directed to the right person.

 

[duncan]

@Eeyore, that you ask why someone would not prove they still have Lyme via culture after early disseminated is telling.

You will not find what you need about Lyme in a text book or on the CDC's website. You need to read the studies. Lots and lots of them. See how they have changed over the years, and at whose hands. Get immersed in the history and motivations and logic at play.

If it is not that important to you, no one would fault you.

BTW, to admonish anyone who has - or even MIGHT have - a disease resistant to treatment to simply go out and cure it, seems to me worse than condescending.

 

[Eeyore]

@Antares in NYC - It was, but probably not the way you are taking it. I'm not suggesting that you leave the boards - I'm just saying that I don't understand how, if you understand what's wrong with you, and it's active Lyme, you are not just getting the treatment to recover and what the big deal is. It just doesn't add up for me.

BTW - HLA-DR4 is part of the adaptive immune response and has nothing to do with NK cell function - the reason they are "natural" killers is that they have innate cytotoxicity, they don't need to find an antigen and react to it. In fact, they cannot - no cells of the innate immune system react specifically to pathogens. NK cells mostly look for cells lacking HLA class 1 expression and kill them - this implies that the cell is abnormal (e.g. malignant).

When you say they miss over 50% of cases, versus what? The tests that clearly come back with false positives? Unless we have a 100% accurate test, we cannot gauge how many false negatives or false positives other tests are making. You have to have a reference standard. I don't see a good reference standard for Lyme, so it's really hard to know if the normal test is accurate or not, and if the one you prefer is accurate or not. Each one is being analyzed using the other as a reference, and neither is clearly a gold standard for testing.

@duncan - How does one know he/she has treatment resistant lyme? This is the problem. Without a positive PCR or culture, the most likely explanation is that it is leftover antibody memory response. This would happen if you got strep throat, then got penicillin. Some people develop long term complications from strep that are not a direct result of the pathogen. The penicillin kills it - strep is not a very resistant organism (one of the least). However, in rheumatic fever, patients develop antibodies against the heart. They suffer long term arthritic sequelae and heart damage due to these antibodies, not due to persistent strep - even though strep antibody tests will be positive. Cultures and PCR, will, however, be negative. I suspect lyme is analogous to rheumatic fever. So this is a triggered autoimmune response, and no antibiotics will cure it.

So I don't think you can just go out and get it cured - because I don't think there's an infection. When there is, I think you can go get it cured - and really should, ASAP. If not, I'd expect you to go into a progressive decline and ultimately to die of it (like with syphilis), not go into a long term relapsing/remitting kind of pattern.

 

[duncan]

@Eeyore : No. Very simply, what you just posted is inaccurate.

For instance: What is your take-away if you snare a positive PCR in today's Lyme environment? What are the odds of getting a positive PCR even with culture-confirmed cases?

Also, you understand that depending on the species, Borrelia can be a relapsing remitting kind of bug? Regardless, people do go into a decline - like syphilis. We don't know how many die from the disease because that research or monitoring isn't really being done.

And please look up why you are monstrously unlikely to get a culture outside of an EM. Don't keep repeating that mistake.

 

[Eeyore]

Ok - say we assume you are unlikely to get a positive culture. You still haven't answered the question of how to prove you have it, and why a blot doesn't just show past exposure.

I'm suggesting that a positive culture proves infection, not that lack of positive culture disproves it. PCR, while somewhat less specific, might be more sensitive, and would still at least be somewhat persuasive that there is current infection versus past, although there is no guarantee of viable organisms containing that DNA.

No one in the chronic lyme group is showing any real evidence of active infection. The clinical syndrome looks so much like ME that an autoimmune mechanism seems far more likely to me.

There are certainly cases of chronic lyme - but your argument is circular. You argue that you have chronic active lyme because of an antibody test, and then arguing that the lack of efficacy of antibiotics proves that the bug is resistant, and that a negative culture then clearly cannot be accurate, since you have active infection - but the existence of active infection in you has never been established. That's the basic problem here.

This doesn't prove that you don't have Lyme, but I don't see how you can claim you do with any certainty. I don't doubt your illness - I just doubt the explanation.

 

[duncan]

"No one in the chronic Lyme group is showing any real evidence of active infection."

Sure they are. As much as anyone with late stage Lyme generally does. Whose definition of chronic Lyme are you buying into?

I cannot prove I have chronic Lyme or late stage Lyme. I could not prove I had Lyme within days of my EM dissipating.

But I have markers, and I can match those with symptoms. I can make a convincing case I am still infected.

Moreover, no one can prove my evidence is wrong. Not only can no one prove that I do not have Lyme, I have a preponderance of evidence I DO have it.

Science is at an impasse, and why do you imagine that is?

Tell me: How do you prove someone has late stage? You cannot. But you can prove someone has acute Lyme, then follow them, which I'm pretty sure was done about 35 years ago. So we know how it progresses.

You cannot prove ANYTHING about Lyme once it disseminates. But you can deduce. This is simply the way of the Lyme world right now.

So the more you can learn about the disease, and the metrics we use to identify its presence, and the therapies we throw at it to defeat it or mitigate its impact, the better.

You need to delve deeper. Roll up your sleeves and dig.

 

[Eeyore]

What markers do you have that distinguish current from past lyme infection? This is what I'm interested in. I'm looking for actual evidence that you have active Lyme, and not simply some sort of post-Lyme syndrome that somewhat resembles rheumatic fever.

We know how it progresses - but we don't know if that progression is actually caused by the bacterium, or if it's caused by the immune system. It's entirely possible that after long exposure to Lyme, the symptoms that are observed are not caused by Bb anymore.

You can deduce - but your deduction does not seem logical to me. That doesn't mean you're wrong, only that I don't think you've shown your claim to be true yet.

If someone showed me an in vitro study that showed that every antibiotic we have fails to kill Lyme, that would be interesting - but I'm fairly certain that's not the case and that Bb is susceptible to at least some antibiotics. As long as that is the case, then treatment with antibiotics failing to resolve symptoms is evidence (not proof) that there is no chronic Lyme in those patients treated.

If you haven't been treated with antibiotics, I'd ask why? I'm guessing you have, it seems obvious that anyone believing they have chronic lyme would choose to get antibiotics.

 

[duncan]

"If someone showed me an in vitro study that showed every antibiotic we have fails to kill Lyme..."

Do you know the difference between antibiotic resistant bacteria and persisters?

I bet you do. So, go google Kim Lewis and Monica Embers and Ying Zhang - each one - and see what they say about the current crop of abx for Lyme IN VITRO. These would be three distinct studies demonstrating Bb persisters.

I advise you to read up a little more.

 

[Eeyore]

I'm only seeing a few antibiotics tested. We have hundreds of antibiotics, if not thousands... Where is the testing to find which one works? This seems the obvious course of action if one believes there is chronic infection to treat. This is not a difficult test to do - I've done it myself in a lab. It's not expensive either. You apply some bacteria to agar in a petri dish (I'm not sure exactly what Bb needs for growth, but it is known since we do culture it), and then you drop some little discs on it that contain antibiotics of different types, labelled, and then measure the zone of inhibition around it after a day or so of incubation, which allows you to deduce the MIC (minimum inhibitor concentration). You then choose the right antibiotic and use it to kill the bacteria. This is routinely done in hospitals for infections, especially staph, when there is any question of resistance. It allows the doctors to choose the optimal antibiotic for a given patient.

Additionally, some antibiotics are bacteriocidal (kill bacteria), others are bacteriostatic (prevent them from growing and multiplying). An example of the first is penicillin (causes cell wall rupture) and of the latter is tetracycline (it binds to ribosomal subunits inhibiting translation). It's not surprising that bacteriostatic antibiotics would allow bacteria to survive in small numbers - but that is the role of the immune system, and it is not really dependent on HLA's at that point - neutrophils will recognize invaders via PRR's (pattern recognition receptors) such as TLR4 which recognizes bacterial polysaccharides. This occurs with all bacteria treated with these antibiotics. This is the nature of how antibiotics work - yet infections get cleared all the time with them. Cultures start positive then rapidly go negative with antibiotic treatment - suggesting that the infection is being cleared.

You haven't answered yet what markers you have that indicate active lyme infection.

 

[Eeyore]

http://www.ncbi.nlm.nih.gov/pubmed/26038747

This one seems to offer some ideas for treatment. They tested a good number of antibiotics, and found good activity against persisters. These could be combined with more commonly used antibiotics for maximum effect.

Nothing I'm reading suggests that this is an incurable bacterial infection.

I think this is analagous to ME patients who go out to get antivirals because they are sure the viruses are the cause, but don't get better with them. However, they hold onto the belief that they have active, clinically relevant infection. Then similar groups of patients get treated with rituximab - which suppresses the immune system - and 70% recover. I've been down this road before myself, and it's a dead end.

 

[duncan]

Aach, now you either didn't do your reading, or I fear you are being disingenuous.

What are the abx of choice for Lyme? IDSA-recommended treatment?

The answer is doxy and rocephin. For years, the dogma coming out of Mainstream Lyme has been those two will do the trick. Administered for a set and very singular time frame. Period. PERIOD.

You will be cured of Lyme, was the assurance.

If you read those three studies, you'd know that the findings from those studies (all very recent) potentially undermine - if not totally undoes - that treatment dogma. So, all the time that they have been saying their therapy absolutely cures Lyme, it now appears they may have been wrong. And now we know one of the reasons.

Why do they say chronic Lyme cannot exist? Because they say their dosage of doxy or rocephin is sufficient. That chronicity cannot be an issue with Lyme because their therapy worked in vitro, virtually all the time. But these studies suggest they were wrong. Three independent teams amply and repeatedly demonstrated that.

By extension, chronic Lyme can and does exist.

And if they've been wrong about that for all these years, what else have they been wrong about? Although, this is pretty big. Still, it is only one facet.

You spent, what, maybe 20 minutes just now digging?

Do some more.

 

[Eeyore]

I didn't say that those antibiotics are all you need - I linked a paper that tested over 100 abx by one of the authors you suggested. What I'm suggesting is that there are abx regimens that will work if the standard one does not. My question is why there are chronic lyme cases among patients going to "LLMDs" who would, one would think, be familiar with the research. Why aren't they curing their patients when there exist abx that are shown (by them!) to work? Are even these docs just giving the doxy/rocephin combo?

If there are docs out there who see the problem, and have read the research on which abx work, why aren't they out there curing people in droves and ending the scourge of chronic lyme?

What antibiotics have you tried that have (presumably) not worked, since you are here and still sick?

And you still haven't said what the markers are that you refer to that imply active Lyme infection.

 

[Antares in NYC]

@Antares in NYC - It was, but probably not the way you are taking it. I'm not suggesting that you leave the boards - I'm just saying that I don't understand how, if you understand what's wrong with you, and it's active Lyme, you are not just getting the treatment to recover and what the big deal is. It just doesn't add up for me.

You know nothing about me and my circumstances, whether I can afford IV antibiotics or not. Do you know if my insurance approved it? Of course you don't. You don't know if I spend about 1/3 of what I make in finding a solution to this nightmare, afraid that every working day may be the last, and that's my lifeline to any kind of care.
So what the hell am I doing posting in these boards when I should be running to get that solution that's just right there, around the corner for me to grab!

People can be judgmental and clueless online. Your comment was offensive to me, and aside from what I have posted in these forums you know next to nothing about me and my circumstances. But since there seems to be so much doubt about people that "claim to have Lyme", I'll tell you I have tested positive with standard tests in 1998, 2005, and 2014. I also had the IgeneX test done last year, which showed positive igg and igm, which was explained to me as an ongoing active infection. The same test listed all bands for "CDC positive". Also positive (very high titres) for bartonella.

I have tried many protocols of oral antibiotics, with limited results. I can't afford IV antibiotics. I should also be on IVIG, as two of my subclasses are basically depleted, but my insurance denied that too. My ME/CFS specialist tells me my immune system is exhausted, very low NK cell count and function.

I'm sicker every day. Every day is worse than the day before. So why don't I just run and get the help I need, right? Sounds like you speak from a position of privilege that I, unfortunately, do not enjoy. I wish it was that easy, but it's a nightmare with no end in sight, constantly at the edge of disaster. But whatever, who cares.

@Antares in NYC BTW - HLA-DR4 is part of the adaptive immune response and has nothing to do with NK cell function - the reason they are "natural" killers is that they have innate cytotoxicity, they don't need to find an antigen and react to it. In fact, they cannot - no cells of the innate immune system react specifically to pathogens. NK cells mostly look for cells lacking HLA class 1 expression and kill them - this implies that the cell is abnormal (e.g. malignant).

You missed my point. Dr. Huber's study pointed that the DR allele is responsible for the immune system response. When the Lyme antigen is presented to the immune system of someone with the DR4 allele, it produces interferon gamma, an inflammatory response to pathogens like. On the other hand, when the Lyme antigen is presented to the immune system in the context of the DR11 allele, it stimulates the production of antibodies, a response that does not induce inflammation and is able to clear the infection.

When you say they miss over 50% of cases, versus what? The tests that clearly come back with false positives? Unless we have a 100% accurate test, we cannot gauge how many false negatives or false positives other tests are making. You have to have a reference standard. I don't see a good reference standard for Lyme, so it's really hard to know if the normal test is accurate or not, and if the one you prefer is accurate or not. Each one is being analyzed using the other as a reference, and neither is clearly a gold standard for testing.

So you agree we need better tests, right? I don't have the study handy, but it has been proven that the official two tier Elisa/WB test misses over 50% of positive energy cases. It is a joke. Would you accept an HIV test that would only detect 50% of infections? Of course you wouldn't.
IgeneX may have produced some false positives, but I remember reading way less in comparison to the outrageous false negatives of our current official testing. I would have to parse these forums again for that info.

So I don't think you can just go out and get it cured - because I don't think there's an infection. When there is, I think you can go get it cured - and really should, ASAP. If not, I'd expect you to go into a progressive decline and ultimately to die of it (like with syphilis), not go into a long term relapsing/remitting kind of pattern.

Well, thanks so much for the diagnosis, Doctor Eeyore. I would take my advice on Lyme persistence from actual ID doctors that see Lyme patients every day and know how nasty this bug can be. Comparing Borrelia to strep does not cut it. Syphilis is a more apt comparison: a spirochete infection, difficult to cure, evades and survives many treatments, and can come back years later to ravage you cns.

Please read the studies by Kim Lewis, Zhang, Embers, and others. Borrelia can persist and come back despite abx treatment.

 

[Antares in NYC]

I didn't say that those antibiotics are all you need - I linked a paper that tested over 100 abx by one of the authors you suggested. What I'm suggesting is that there are abx regimens that will work if the standard one does not. My question is why there are chronic lyme cases among patients going to "LLMDs" who would, one would think, be familiar with the research. Why aren't they curing their patients when there exist abx that are shown (by them!) to work? Are even these docs just giving the doxy/rocephin combo?

If there are docs out there who see the problem, and have read the research on which abx work, why aren't they out there curing people in droves and ending the scourge of chronic lyme?

What antibiotics have you tried that have (presumably) not worked, since you are here and still sick?

And you still haven't said what the markers are that you refer to that imply active Lyme infection.

Are you aware that most insurance companies do not cover those abc treatments for Lyme, right? They do deny it using the official CDC/IDSA guidelines as the only Official Lyme treatment to use, which calls for a maximum of four weeks of oral doxycycline and little more.

Getting those IV abx combinations that are proving to kill Lyme per sisters is extremely prohibitive for most people, and it's something that most have to pay off pocket. You obviously have not been down the lovely path of dealing with Lyme and the joys it brings.

 

[barbc56]

00,000 individuals in the US alone contract Lyme each and every year. At least 10 to 20% of those continue to report unabated symptoms after treatment. . So over just the last five years, it is likely 300,000 or more Lyme patients whose treatments failed them have entered the scene

How does it follow that having persistent symptoms must mean you chronic lyme? The symptoms could also be explained as downstream effects from the original infection. From what we know about similar conditions, I would think that's more likely. I am not denying that symptoms can continue nor that these symptons aren't debilitating because they are.

My theory and it's just that, is it's most likely that LLMDs over diagnose lyme disease while there are cases missed by the ID doctors.

No, I don't have numbers because the CDC doesn't measure these things. Yet, LLMDs treat people every day, and many do recover fully and successfully

So we really don't know one way or another.

That is an issue. Another would be if you can even cure borrelia after a certain point in some patients

If some cases aren't curable, how do you determine when to stop the antibiotic? Or do you?

If you read those three studies, you'd know that the findings from those studies (all very recent) potentially undermine - if not totally undoes - that treatment dogma. So, all the time that they have been saying their therapy absolutely cures Lyme, it now appears they may have been wrong. And now we know one of the reasons

If you could post the specific studies, it would be helpful.

Thanks.

Barb

 

[Antares in NYC]

So we really don't know one way or another.

Plenty of testimonials out there from people who actually recovered with long term IV abx. Dr. Burrascano himself is one of those cases

 

[Eeyore]

@Antares in NYC - You're right that I didn't consider the financial constraints. I suppose that does reflect a certain lack of understanding of others' circumstances. I'm sorry you can't get needed treatment because the insurance company is denying it. It's not hard to imagine that it could happen that way, and that it would suck. I've spent my life with an illness I didn't understand - so it was never about not being able to afford the treatment, but rather about there not being any available treatment.

I think that tone doesn't come across well in forums like this. I'm scientifically skeptical - about everything - including my own views. I believe in the Socratic method where argument leads to truth. It's not meant to be personally adversarial, but I think our understanding improves when we try to poke holes in each others' arguments.

I agree with you on the DR4 vs DR11 - it's at least probable that different HLA's influence reaction to pathogens. I do live in a Lyme endemic area, but I've never had Lyme - and my tests remain negative (every band on the blot). I'm also a DR11 carrier. Interesting. Of course, I still have ME and am still sick, so who knows how much that helps me...

My point on the testing is that I don't know how to interpret the 50% false negatives. That implies we have a test that is accurate to compare it to. 50% false negatives means that, say 100 people test negative - of those 50 are actually positive. To know that, we need a test that shows that those 50 are positive, but I don't think we have that. That doesn't mean the tests that we use are great either. It just suggests that they do not concur (the "standard" test and the one you think is better). Without a reference standard, there's just no way to know how good they are. Tests are always measured vs a reference test - which is often some kind of western blot - but you can never say a test is absolutely giving x% false positives/negatives, you can only say that it does so vs another test, and unless you have a way of knowing how good that test is, you can't gauge either really. Actually, it would be interesting to look at how they validated the current, more medically accepted test, since it's presumably FDA approved.

The other problem is of course that antibody tests don't work well for determining active infection unless we are talking about a pathogen that is ALWAYS lifelong. I'm not sure how to solve that problem. As I mentioned, a positive culture is pretty definitive, but a negative culture does not rule anything out. It would be interesting to see how the FDA test does against people with positive cultures - if it misses some of those, that would be proof it's really getting false negatives. If it's just vs another antibody test, then you can't really know.

You may very well have chronic lyme. Obviously Lyme can become chronic if untreated, and it sounds like you are unable to get the treatment that would cure it. I don't think there's Lyme we can't cure, although I do think there's Lyme we don't cure.

I think we may need better tests - I'd have to look at how the FDA test was validated and approved. Vs. what standard? Same for the Igenix (if it was approved...) I'm not convinced either of them is accurate at detecting past infection, and I am definitely convinced that neither can reliably distinguish past from current infection. IgM being elevated is, theoretically, an indicator of recent infection, but it's really kind of a fluky thing to measure. IgM has low avidity in general and is only useful for early response to pathogens, then the B-cells class switch to IgG. For example, when people have chronic infection with EBV or HHV6, most will show negative IgM over time, although sometimes it will show as positive - no one knows why, and it doesn't really correlate very well with reactivation (as tested by PCR). In general, IgM is not a great test for much of anything, but it can be useful in some circumstances. It is probably true that elevated IgM is more common in active infection than past infection though - even if the correlation is far from perfect.

I would never suggest you take my advice here over that of a doctor - that's even in my signature. I'm arguing because it is how I learn and reason through arguments. When you have to defend an argument, you have to think about it. Finding out you are wrong is very important - otherwise, you just continue to be wrong - so when someone can show I'm wrong, that helps me.

It does sound like it would be worth trying abx in your case. I'm surprised it's that hard to get the insurance company to cover it, and that your doc can't get it through. My experience has always been that if a doc wants it badly enough, they will get it. I suppose not all plans are equal though. What does it actually cost for a course of the abx you think would cure you?