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This information is drawn from two discussions on Lyme and the coinfections, conversations involving Eric Gordon, Wayne Anderson, and Nancy Faass.
Nancy Faass: Let's talk about the biology. Given that Lyme and most of the coinfections are intracellular, what are the difficulties in testing and treatment? Are there special challenges that grow out of the fact that they are among the smallest living organisms on earth?
Dr. Anderson: Yes, what we know about the organism [borrelia] is that it goes through different phases – the spirochetal phase, a cell-wall-deficient phase, and a cystic phase. It has genetic complexities that allow it to adapt to different environments, different stresses; it can go dormant, it can take advantage of the patient's weakness, it can hide in poorly circulated areas.
NF: At one point I think you mentioned that it can take on stealth forms in which it mimics our own immune components.
Dr. Anderson: A study was done at the Rocky Mountain Institute in which they dyed the spirochete red, and they dyed the lymphocyte cell green. The red spirochete, which you can see in a video, enters the green white blood cell and comes out green. They felt that the spirochete did take on our own cell material for a few of its growth cycles. It was dramatic to see that actually happen.
Dr. Gordon: One of the ways borrelia evades the immune system is to become intracellular. For example, it can internalize into endothelial cells that line the blood vessels. Lyme lives in biofilms and among fibroblasts. It gets into nerve tissue, it's definitely in the interstitial space, and it lives in the intercellular spaces and in connective tissue. Babesia is an intracellular parasite that lives inside red blood cells, among other places. Most of the other coinfections such as rickettsia, chlamydia, and mycoplasma are intracellular.
NF: Tell us more about the challenges in testing.
Dr. Gordon: The CDC has had the criteria of first doing an ELISA, which is a kind of screening immune test for Lyme, and then doing the Western blots only if that was positive. The problem is that we know from real studies, from good data, that the ELISA is going to be negative in about 50% of the people, even those with acute Lyme infections. If you go to any conventional doctor, the first thing they'll do is an ELISA, and if that's negative, they will not proceed with any further testing. The ELISA is a method of doing an antibody test, but it's not very sensitive to Lyme.
Then the next test that they do is the IgG and the IgM. That's really where we see things differently than the infectious disease doctors, who say that the IgM becomes positive in the first few weeks of the infection and goes away after a month to three months. This is a pattern that's seen in many, many illnesses, but not in 100% of them. So when an infectious disease doctor sees a positive IgM, they say that is a false positive.
NF: If it's beyond that initial infectious period?
Dr. Gordon: Right. If you've been sick for a year and the only thing that you have on the LabCorp or Quest testing is a positive IgM and you're referred to an infectious disease doctor, whatever your symptoms may be, they will see that as a false-positive Lyme test.
Dr. Anderson: And this is on a Western blot test.
Dr. Gordon: – which is still considered "the test." The important piece here is that what people treating Lyme have seen over the last 30 years is that Lyme patients have a pattern of IgM positivity with chronic infection. How high the IgG is determines whether they think it's acute or chronic, or whether it's just old.
In the mainstream, the criterion is that Lyme is a clinical diagnosis. It's based on signs and symptoms, not on the lab test. If you have a young person who has a persistent knee effusion, like a swollen knee, that looks like Lyme to them. But if you go in and you hurt all over and you can't sleep and you're depressed and you have these odd pains in your joints, they'll just think that you need Prozac or Cymbalta. They just don't believe that people with multiple symptoms across multiple organ systems have Lyme disease.
If patients have persistent infection and persistent symptoms after they've been treated for a month with antibiotics, then they define that as post-Lyme syndrome, which is an autoimmune disease. The point is that they're probably correct in some patients, but it's very few in our experience.
NF: How often are multiple symptoms indicative of the coinfections as well?
Dr. Gordon: Hugely. That's one of the things that I've learned from Wayne over the years.
Western Blot Reagents
Dr. Anderson: Also, not all Western blots are the same. The reagents used in a standardly manufactured Western blot by LabCorp or Quest are very weak, and their sensitivity is very weak. So, very often they'll be falsely negative. In contrast, IGeneX, which has developed their reagents to be much more sensitive to these pathogens, gets many more positive findings on their tests. Conventional infectious disease doctors have discounted IGeneX because the tests are so often positive that the infectious disease community believes these reagents have been overly sensitized, producing an excessive number of false positives. They'll discount an IGeneX test and use the LabCorp or Quest test as the valid test.
The New Culture Test
Dr. Gordon: The culture test is just amazing. The culture is actually what allowed Dr. Burrascano to do his early work so effectively. He was working with Dr. MacDonald, a pathologist, who would culture his patient's blood and see the microbe, so he knew that he was actually treating Lyme.
The test is currently available – it went on the market in October 2011. It's from Advanced Laboratory Services (www.Advanced-Lab.com), in Pennsylvania. This is a culture, so when you get a positive answer, a positive test is as 100% as anything can be in medicine. A positive test is real. Right now they've sent it out to three universities to reproduce their results, because they're trying to get FDA approval for it, so maybe eventually it will be insurance covered. In the test they take your blood, look at it under a dark field, and if they see any spirochetes, they stain them. If they don't see any, and they usually don't, they put the samples in the culture medium for about ten days to two weeks and then look again. If they don't see anything that time, they put it away for another two months, because this is what we call a very fastidious organism. It's hard to grow and you have very few in your bloodstream. That's what has always been the difficulty.
If you have sepsis, there are tons of bacteria floating around in your bloodstream. But with a chronic infection like Lyme disease there are very, very few in the bloodstream; they're all hiding. So this test allows us to grow maybe the two or three spirochetes that may be in that vial of blood [even though they may not initially be visible].
With this culture test, if it's positive, you know the patient has Lyme. There are still probably people walking around who have a positive test but who don't have significant symptoms. But if someone has symptoms and a positive test, I feel much better about being very aggressive in treating them, if they can tolerate aggressive treatment. [Lack of definitive testing] often stopped me in the past, because so many people are hurt by inappropriate use of antibiotics. That's why the herbs have become so important to us, because we saw the fallout from treating people for long periods of time. In many people, for example, gut flora is destroyed.
The Lyme Holy Wars
Dr. Anderson: One thing that happened over the last ten years is that our alternative treatment interventions have improved significantly. We now have many choices of nonantibiotic treatments. Initially we only treated for ehrlichia and Lyme. Then babesia was identified, and then bartonella; relatively speaking, those are fairly recent phenomena. I first became aware of babesia around 1997 and bartonella in 2002. And I think in the last ten years we've also begun to understand the mechanism of action better, because we were functioning under the infectious disease model, which Eric can articulate nicely, having dealt with it in hospital settings in his training.
Dr. Gordon: That is why we have what I call the Lyme Holy Wars to this day – because we keep talking as if we were speaking the same language as the infectious disease doctors, and they think we're crazy. And for good reason – for example, often we didn't have a culture to prove that the pathogen was actually there. Today, since we have Advanced Labs, we do have a culture, but before that we were looking at test results for antibodies and arguing about what they meant. The idea that we were treating for "bartonella-like organisms" would make an infectious disease doctor's hair stand on end – because they are taught that if you cannot find the microbe on a gram stain under a microscope and you cannot grow it from the bloodstream, then you do not know what you're treating. Unless the person is dying in front of you, you do not treat. So the idea that we were putting people on IV antibiotics sometimes for months for an "infection" that we couldn't identify for certain – based on clinical symptoms – was heresy and still is heresy to the infectious disease community. I think that is a big part of the problem.
There is another point that is so important: we don't know what we are treating most of the time when people are being treated for "chronic Lyme." Yes, Lyme is often involved, babesia is often involved, bartonella-like organisms, whatever they may be, are involved, and the Protomyxzoa rheumatica that Dr. Fry is talking about, perhaps that is present. Parasites are also a factor for so many of these patients, and maybe there are other parasites that we're not aware of – so all these factors are present.
One of the issues that I want to mention is the idea that most infectious disease the average doctor deals with – strep throats, pneumonias, and other conditions for which they use antibiotics – send out "coherent signals," meaning that the bacterium does something very predictable and the body responds in a way that is fairly predictable, so the symptoms and the tests align predictably. If a hundred people get pneumonia, most of them will have the same signs on the X-rays, the blood count will change in the same direction, so it's coherent, predictable, and everyone is happy.
For chronic Lyme we are not dealing with that kind of predictability. In the first few weeks of the infection Lyme may be similar to these other "infectious diseases" and have a clear, predictable interaction with the body, meaning that it will create x symptoms and the body will react in y ways. However, once the infection has been present for a while, those patterns fall apart. It becomes a very, very individual disease, a condition in which the issues are, what's wrong with your body, what's out of balance, and what is the strength of that particular species, subspecies, or infectious bacteria that you've got. And then the dance begins.
Dr. Anderson: We could say these are "functional infectious diseases" as opposed to the type that Eric just mentioned, which are more predictable. These are diseases that affect the cells' function. They don't destroy cells, they don't create abscesses and big pockets of infection. They can in some people, but generally speaking they're just reducing the functional capacity of the cells, which results in the symptomatic presentation. Consequently, each person will, as Eric said, have a slightly different symptomatic presentation because the bacteria are going to the weak spot for that person. One of the things I tell my patients is, Never compare yourself to anyone else who has Lyme disease, because you're going to be different; and the horror stories that you hear from other people might not pertain to you, because it's going to affect your level of function differently than its going to affect someone else's. So, it always goes after the individual's strengths and weaknesses. In our discussion here about the pros and cons of antibiotics versus herbal medicines, it's really a fool's errand because everything has to be filtered through the individual patient – what is best for them in response to the history, the physical, all of the tools that we have to assess the patient. It becomes, not a philosophical difference between herbs and antibiotics, but a matter of appropriateness for that particular patient. Having said that, we're going to simplify it and try to come up with pros and cons to antibiotics and herbs.
Dr. Gordon: I remind patients, Just as you cannot predict your illness, your response to therapy is going to be individual.
Antibiotics or Herbal Therapy?
NF: Which patients tend to do well with one treatment choice or the other – IV antibiotics or low-dose botanicals?
Dr. Anderson: The 80% of patients who have more dominant coinfection presentations always do better on the herbs. The 20% of Lyme patients who have very dominant, aggressive Lyme presentations do better on more aggressive antibiotic treatment. And always, very early cases do better on aggressive antibiotic treatment.
NF: Oral or IV, or both?
Dr. Anderson: Well, in an early case you can always start with oral. But in a very aggressive case our tendency is to use IVs in a more flexible way; not the rigid dosing of the past, but in relation to the patient's tolerance. In new cases, the antibiotic treatment is always best because we want to nip it in the bud, and that's often oral initially. Once the Lyme is identified as a significant pathogen, the kind that makes people really sick quickly, then we fairly quickly go to IV so that we can get aggressive with it and match its aggressiveness. Again, that's in a small percentage of people.
NF: And by significance, do you mean primarily neurological symptoms?
Dr. Anderson: Yes, encephalopathy, meningitis – fevers, tremors, seizure-like experiences, terrible migraine headaches – patients with these very severe neurological presentations would go quickly to antibiotics, and IVs would be a consideration. When it comes to treating borrelia we go right to the IV. There's so much better penetration into the body with the IV.
Overall, though, I need to emphasize that our use of antibiotics in general is way down. I use maybe one-fifth of the antibiotics that I used ten years ago. Our need to use antibiotics is much lower because the herbal treatments have become so much more effective that we can rely on them and not use antibiotics as the sole treatment protocol.
Dr. Gordon: Antibiotics have so many different effects on the physiology. We've become aware of this because we see the canaries in the coal mine. Yet human resilience is amazing. This culture test has made me more aggressive when I'm facing someone who is very sick and can tolerate antibiotics. When I push the antibiotics aggressively, pulsing it – just doing it for three or four days a week – I'm getting results in people who've been sick for years, or even decades. The results are amazing. I haven't seen this kind of response before because I was hesitant to expose patients to this kind of intervention if I wasn't positive they had Lyme. Often interpreting the Western blot is like reading tea leaves: they rarely give you an actual positive; often they are inconclusive.
NF: Generally speaking, in many research studies there are probably three or four major response patterns. For example, do you test for methylation before you go in this direction or that? If someone methylates poorly, would you immediately start thinking herbs rather than antibiotics? Do you see patterns forming that tend to guide you?
Dr. Anderson: Absolutely. This is the art of it, which I feel we have honed over the years in identifying the patient who has other problems. Lyme, basically, is like the ringleader: it allows other opportunistic infections to take advantage of the patient, because it is immune-suppressive. Lots of other opportunistic organisms are enabled to proliferate, and that can happen in the gut, they can be parasitic, fungal, or opportunistic bacteria. They can compromise metabolic action like methylation. Oxalate metabolism is a fascinating new aspect of the picture. There are so many of these patterns – patterns that are metabolic and pathogen-related, immune-suppressive, or autoimmune. We've become very sensitive to them and try to identify them, and pave the way by treating them before getting too aggressive with antibiotics.
Dr. Gordon: I think the herbs are safer to start with, but if people have a methylation issue, you can make them just as sick with an herb as you can with an antibiotic. The beauty of the herbs is that they often are balancing, they're not just killing. Many, many people like the Byron White formulas. There is also a practitioner, Dr. Heiner Fruehauf, who does Chinese medicine in Portland, who has put together some wonderful herbal combinations. This is the same concept that Byron White uses to support the patient while you're trying to reduce the bacterial load – support the body, but don't overwhelm the system. That's the beauty of the herbs. But if someone has a metabolic problem, you can throw them into a mess, because most of the people who really are sick cannot modulate cytokine levels. They may not have enough glutathione, which happens when methylation isn't working, but it can happen for lots of other reasons as well. We try to predict the underlying problems by how the patient reacts to their environment.