Continuing the phone conversation with Eric Gordon, MD from August 16, 2011.
DR. GORDON:
Okay. So, where were we?
Interviewer:
You were talking about having those high inflammation levels and how those impact how to decide what to treat.
DR. GORDON:
Ah, how to decide….yes. At least for me what makes treatment so difficult is the noise. I mean in the sense of, when you start someone on a therapeutic trial, if you’re moving somewhere with them when they start antibiotics, and they begin to respond partially, and then they have some problems, which you fix, and then there is more partial response, and they have more problems. After a while you’re doing a lot of fixing the problems, trying to do a lot of symptomatic therapy.
At the same time using the antibiotic, it can be difficult to know whether the antibiotic is helping, or whether it is causing some of the symptoms. You have to constantly be going back and looking at what is really happening. It’s so important for the patient to keep really clear records, the calendar of when their treatments start, and responses to them, that simple thing I find very useful in deciding how treatment is going.
Interviewer:
I haven’t seen Wayne’s (Anderson) calendar. It might be interesting to have a copy of that, but what do you look for when you’re looking at that calendar.
DR. GORDON:
It is a pattern of response that we look for. What we ask people to do is just, the simplest level is just keep a calendar and write down a plus for a good day, a minus for a bad day, and a zero for a regular day; also a zero goes for any day you really have to think about it.
If you’re not sure if it’s a good day, then put a zero. A good day is a good day. And now some people like to analyze that a lot, they break it down to, “Was my energy good?” “Was my pain good?” Those kind of categories.
But I encourage them to keep a simple one to start with because it’s simple and they will actually do it. The symptoms tend to run together if they don’t somehow keep track of how they are doing, especially in response to treatments. If the active infection is giving most of the symptoms, that’s another hint that we ought to be looking elsewhere for the cause other than just Lyme, look for a lot more bugs if the symptoms really diverge a lot.
We’re looking for patterns, you know, Joe’s (Burrascano) thing about Lyme symptoms coming in 3 to 4 week cycles. I’ve seen it be shorter than that. But it does tend to run in a pattern, symptoms will be worse every 3-4 weeks and with the correct treatment you’ll start to see good days. That’s how you’ll know you’re getting somewhere.
This response to treatment often isn’t a linear response. You’ll see that when you have acute Lyme or Lyme for less than a year then they’ll often get better in that more linear fashion. I mean it’s really kind of dramatic. You’ll give them the antibiotic and they just get better. I see that in a lot of the people around here who have had recurrent episodes of Lyme but have never gotten really, really sick—they tend to get a joint pain or fatigue or joint pain, fatigue, and headache. But they’ll do okay. They never have to stop functioning.
Those folks, you give them the antibiotic and it’s like flipping a switch. You know, even if they’ve had Lyme for 20 years, we see some of the farmers, some of the grape growers, they respond. And what I’m doing with them now, the ones who keep getting re-infected is just to put them on antibiotics 1 week a month.
Interviewer:
Oh, interesting.
DR. GORDON:
And it seems to work. You know, 1 week a month of Minocin or doxycycline and Zithromax and it seems to keep them ahead of the infection, they feel fine. And if they stop they’ll often feel fine for 2 months or 3 months, and then their symptoms start to come back. Now Joe Burrascano and Ray Stricker would probably say that these people have never been completely treated, and they might be right. I don’t know if they’ve been treated completely, but they keep getting reinfected because they keep being outside. This is better than leaving them on the antibiotics all of the time.
It seems to work. The problem that we have is the chronic Lyme patient, someone who has symptoms that interfere with their life even when they’re on antibiotics, is more challenging. There’s still a subset of them who will get better if we get the right antibiotic into them.
But I don’t know again…. The problem we suffer from is we don’t know our denominators. It’s not like you get 100 people who come into the hospital with a heart attack and we’ve all agreed on the standards of care, EKG changes and troponins and the biochemical change, and you can kind of ignore the individual patient more or less, and we do that, use “X” therapy, and we see how we do.
In chronic Lyme we don’t have that. We don’t have clear standards on how to treat someone to best be sure they will get well. So what we’re left with is unending anecdotal medicine, and that is the great weakness of what we do. The only way it’s going to change is if we actually empower patients to keep better records of what they’re doing and what are their outcomes.
Interviewer:
Okay. So that’s what I was going to ask you: How would you set it up? Are you still talking about that simple procedure of better/worse or a more complex system of tracking things so that you’d really get useful data.
DR. GORDON:
If you are going to have a real answer, I’d like to see a more complex system of really tracking things. You know, the real way to go is if someday we could get Syd Baker’s software, but in the meantime if we can just get Joe Burrascano’s program online. If he actually gets his thing together where it’s not as robust, but at least it would be a relatively simple online questionnaire because it’s branching questions, so you don’t have to look at a thousand questions.
Interviewer:
Right. Not unless it’s pertinent to you.
DR. GORDON:
Exactly. You look at like maybe 10 questions, and you go down the pathways that are pertinent to you. And that will help. See, that’s just the point that these people can’t deal with the complex questionnaires. We’re treating people who have multiple things wrong with them. One of them happens to be Lyme or a coinfection, but the people who just have Lyme or a coinfection, I think by and large get better with the antibiotics relatively quickly.
And then we have the people who don’t get well quickly and some not at all. The thing that makes that not necessarily true is that you have the other people that Lyme doctors treated who got well, we have to remember they treated them predominantly with antibiotics for years and years and years and years. And a lot of them got better.
But then you look at (Dr. Richard) Horowitz, you know, Horowitz might be a better reporter, when you think about it, because Horowitz had a lot of patients who didn’t get better. And that’s why he started using the alternative stuff. It could be that some of the people who didn’t get well when working with other doctors just didn’t keep seeing them, so they didn’t get reported.
Interviewer:
This brings up an important point. I think Dr. Burrascano is great, and I think he’s done a tremendous amount of good, but also sometimes the patients listen to him and they feel like failures because they either couldn’t do what he said, or they did it and it didn’t work.
DR. GORDON:
Something to remember when you see different providers is; you just have to remember their therapy still has to fit your situation. It doesn’t matter what doctor you go to. If their story is that this is an infectious disease that can be treated predominantly by use of antibiotics, it will fail if what you have is a genetic tendency to hypercoagulability and mold sensitivity and have had a mold exposure. If you go to a doctor who thinks that things are predominantly mold exposures and your problem is predominantly a chronic Babesia infection which happens to have symptoms that are almost identical to the neurotoxic response to mold.
And you just have to be willing to not feel bad because you don’t respond to their therapy. Their therapies are very, very good and effective, but they often have to be done at either the right time or more importantly in the right patient.
Interviewer:
Exactly. It’s not about the doctor or the patient being wrong.
DR. GORDON:
No.
Interviewer:
Sometimes it’s just a matter of you have to find a doctor that you can actually communicate well enough with and feel like what they’re doing is good enough, whether or not it’s the absolutely optimum thing, but if you can work with them you’re going to do a lot better.
DR. GORDON:
Yes. I think one of the things we can say is that many of the leaders in new therapy tend to be people who are very bright, very strong willed, and able to really look beyond what we know. And push the envelope. That very strength of character which allows them to do that can often make them intimidating when you’re sick and you’re not responding the way their theory says you should.
And it’s just the price that we pay. We are all mortals, and we all have our pluses and minuses, and the plus is that those people are going to lead us to new visions of how to know people. A minus is that if you don’t happen to respond to their therapy they might not pay much attention to you, and not because they’re bad people, it’s just the nature of being a human being.
Interviewer:
Exactly. And when patients can get clear…. I find when they get clear about what they can get from a doctor and what the doctor has to give, instead of being angry at the doctor for not giving them something, they can just see that doctor doesn’t have it to give. If you need it you go somewhere else, but you get from the doctor what they have, what they’re good at.
DR. GORDON:
Right. That’s the whole point of the clinic is that hopefully we’re going to put together enough doctors who are good at different things but they can at least see the whole picture.
But the difficulty is that we all want to be everything. But it’s just the looking at possibilities that’s important. You have to encourage patients to remember that 20 years ago almost everybody was only treating Lyme, and then 15 years ago they realized, oh, maybe we should be treating more of these coinfections. And then they came up with, well we should treat the coinfections first.
But, is that always true? I don’t know. You know, I kind of wonder about that, if it’s always true.
Interviewer:
Well how can that be always true, if at the beginning when they didn’t know about coinfections, and they treated people later for the coinfections because they didn’t know about it, and people still got well?
DR. GORDON:
Yes, exactly.
My point is that we don’t know, and I would like to just assume that…. It depends on what the symptoms are and how people are feeling, what you treat.
Interviewer:
Yes.
So either we can do some more of this later, or you could go into this one section here that can kind of feed off of this. It’s just 2 questions. One is: If Lyme turns into CFS or arthritis, do you stop the Lyme treatment and just treatment the arthritis?
DR. GORDON:
No. That’s an absolute no. No, no, no, no.
I mean that’s something I think is important, I can just say for myself I first began to treat rheumatologic diseases with antibiotics before I knew that Lyme was such a major player, that people have been treating rheumatologic diseases, especially rheumatoid arthritis, with antibiotics since the late 1940s. Thomas Brown started that and we have to remember that when wondering about rheumatic disease. So, you really need to keep treating the Lyme aggressively if you have symptoms from it. And there are people, I have patients who develop what looks like rheumatoid arthritis by all the lab tests.
Rheumatoid factor is elevated, the whole nine yards, but they keep responding to the antibiotics. And their joints stay preserved as long as we keep them on the antibiotics, so something else is happening. And it doesn’t necessarily need to be the anti-inflammatory antibiotics, which I think is the important point, is that we’re treating the bug. For some reason we’re not eradicating the bug, and that’s where alternative therapies I think come in, maybe using more neural therapy. I mean this is something that I’m interested in, is if you listen to Dietrich Klinghardt, the concept that if we have a joint that remains inflamed and it doesn’t keep moving around, that’s where we should be treating the joint: inject the antibiotics right into the joint, inject ozone right into the joint.
Interviewer:
Oh, okay. Interesting. So—there’s another question here, it says: Discuss post-Lyme, specifically autoimmune which presents as rheumatoid arthritis, and is this especially nonresponsive to antibiotics? So would you….?
DR. GORDON:
Well if it’s especially nonresponsive to antibiotics then I would be looking to what else is going on. Are there heavy metals? Are there other toxins?
Interviewer:
But do you feel like this thing that you’re talking about with Dietrich might also be a useful way to approach that?
DR. GORDON:
That would be an interesting concept is to consider, you know, more local treatment because what happens is that when you have inflammation you have poor blood flow to the area, so the drugs you’re giving don’t get there.
Interviewer:
Right. You also have patients who are immobile. They’re not moving around, they’re not active.
DR. GORDON:
Right, just like the infection will limit blood flow. I mean that’s what bugs do. They shut off the blood flow and they shut off the drainage, and so by bringing the antibiotics or other therapies directly locally, injecting into the joint and around the joint, you can open up blood flow as well as the delivery of medication to the area that needs it, so that’s something that we think about. But again you always have to look at heavy metals and toxins when people aren’t responding. You know, what else is inflaming your immune system, because you have to remind people that autoimmune disease merely means that you have a dysfunctional immune system but we don’t know why.
Okay? It doesn’t tell you anything else other than that. People think autoimmune disease is a diagnosis like Lyme, and it’s not. Autoimmune disease is more like being told you have chronic fatigue.
Interviewer:
Yes, it’s a syndrome, more like.
DR. GORDON:
Yes, it’s a collection of symptoms hung together…. There’s specific testing and there’s changes to the cells blah blah blah, but we know practically, I don’t want to say nothing, but we know practically nothing as to the etiology because that….people don’t pay attention to that as they should, and so what we see clinically is that when we either treat heavy metals, treat other toxins that are affecting the immune system or kill the bugs, these autoimmune diseases get better. Not always but sometimes.
They should also often be checking for Chlamydia with a rheumatologic disease and Mycoplasma, but sometimes it’s not going to work, and I think that’s what they have to understand is that at some point we just keep trying.
Dr. Eric Gordon is the founder of Gordon Medical Associates. What Dr. Gordon emphasizes is listening to his patients. “I believe my patients. Their description of what is going on in their body is the most accurate way we have to assess what is going on with them. I interpret the information they present, and blend it with laboratory results and imaging and other tests to determine a protocol that is customized to their condition.”
