The Challenge of Diagnosing the Complex Chronic Patient
This information is provided for educational purposes only, and is not intended to diagnose or treat an individual. Diagnosis is a complex process, and may include labs, imaging, and patient history.
Many times we forget that there can be a trigger that perhaps precipitated the illness, but that now may be gone. And now we’re dealing with what has come in afterwards, or what had been latent before and now is expressed, and that’s where your history taking and the completeness of it is so important. I think that’s what we always have to remember as clinicians and as patients, is don’t get too excited over the one symptom.
Eric Gordon, MD
Dr. Gordon: Doctor Anderson, what aspect of the medical history makes you think a patient has a higher likelihood of having a mold exposure affecting or causing their symptoms?
Dr. Anderson: I’m looking at mucous membranes sometimes for mold, looking for sinus problems, gut problems, bloating and gas. I’m looking at maybe frequent and urgent urination. A history of vaginal yeast infections.
I’m looking for mucous membrane irritation, thinking that as a person is exposed to mold it colonizes on the mucous membranes. I’m also looking for neurological symptoms. If that mold infection gets systemic and those toxins accumulate in the cells, then I’m thinking that can go along with a mold infection that has disseminated, affecting the neurological system.
Dr. Gordon: Some of the mycotoxins may now be affecting the nervous system?
Dr. Anderson: Right! And energy. It’s always going to be about energy.
Dr. Gordon: When you say energy, since most of our patients are coming in with fatigue, what aspect of that picture makes you think more of mold?
Dr. Anderson: I think that, very loosely speaking, mold patients have a little bit better energy than Lyme patients. That’s very loose.
Dr. Gordon: Right, I understand. These are all shades of gray.
Dr. Anderson: Even within the Lyme and co-infection community, some patient’s energy is more affected than others, though energy is affected in all of them. It’s just the degree.
Dr. Gordon: That may be a very interesting tangent to go down for a moment, since most of the people we see do have problems with energy. How do you differentiate that? What begins to break down your feeling from somebody, let’s say, who just has Lyme, versus somebody you think has more chronic fatigue, versus Bartonella?
How Neurological Issues May Come into Play
Dr. Anderson: I don’t actually look for energy to be the variable that differentiates them. I look more at the neurological symptoms. Energy is always in the mix. If energy is normal then the patients are not in this mix, because the mechanism of action is that it affects the level of function itself. And it lowers that level of function so that the mitochondria become challenged. It’s going to be a lower generation of ATP – energy.
I think the differentiating characteristic is more neurologic, so the neurological system primarily is affected. When a patient has more pain or more brain fog or joint pain, muscle pain, and the more neurological it is with numbness, tingling, the more I think that they are in this arena of Lyme and mold, petrol based chemical exposure – they all affect the neurological system, primarily. If that’s the primary system affected then this helps me to rule in or out if this is a neurotoxic illness or is it something else.
Now the chronic fatigue patient, generally speaking, can have less neurological symptoms and more fatigue symptoms. If energy is worse than the neurological symptoms, and somebody has really terrible energy but can still think, then that is less about Lyme, mold and petrol based chemicals than it is about chronic fatigue related things, which I’m thinking are more viral at this point.
Dr. Gordon: So, one of your ways, when taking your history, of differentiating between a chronic fatigue and still maybe active or semi-burned out viral issue that has left the low energy state in the body, versus the Lyme or the mold patient, is that there’s really not that big effect on the cognitive system with the chronic fatigue people? They might have slow thinking, but it is not their major issue?
This is what’s so important and so difficult for so many patients and practitioners in getting this, that these are all rules of thumb. They give you a way to make the cuts as far as who has what until we begin to see response to therapy. Because, unfortunately the history in these diseases is only the first step.
It's Never One Symptom
Dr. Anderson: Also, it’s never about one symptom. It’s always a constellation of symptoms. You have to really get the full history and connect the dots.
Dr. Gordon: Wonderfully said.
Dr. Anderson: And there can be multiple points that show mold, that would speak to mold, but maybe there’s more dots connected that speak to Bartonella. For me it’s about what’s the immune system struggling with right now? In the moment, what is reflected in that patient’s constellation of symptoms? How is that patient stuck? And I think that reflects what they’re stuck on right now.
Dr. Gordon: The problem is when patients come in and all they can report are diagnoses that they have come up with or they’ve been given, not realizing that we really need their range of symptoms.
Dr. Anderson: And they can have an idea and call it a name, but we have to challenge that. We have to get into the details here.
Dr. Gordon: I think that’s so important because many times we forget that there can be a trigger that perhaps precipitated the illness, but that now may be gone. And now we’re dealing with what has come in afterwards, or what had been latent before and now is expressed, and that’s where your history taking and the completeness of it is so important. I think that’s what we always have to remember as clinicians and as patients, is don’t get too excited over the one symptom.
Dr. Anderson: For instance, somebody has night sweats, and it’s almost immediately assumed that person must have Babesia because they have night sweats. But there are lots of things that can cause night sweats, not just Babesia. You don’t jump to a Babesia diagnosis just because somebody has night sweats, even though that’s a predominant symptom, and if it is not there you do have to wonder if it is Babesia there or not. But one symptom does not make for a diagnosis.
Dr. Gordon: That is a tendency. I’ll always remember a psychiatrist I worked for. A patient mentioned that he heard voices, and all the psychiatrist could say was. “. . aahhh, schizophrenia?” Whereas there could be other possible causes.
Dr. Anderson: The other thing about history taking that I think is really important, is our patient’s (complexity), and we as clinicians are trained to hone in on the dominant chief complaint, to focus on that dominant chief complaint. We are trained in this environment where you generally were only given 20 minutes, sometimes down to 7 minutes in a primary care setting, to hone in on that chief complaint and what could be the cause.
Well, what we have to do is, we have to refine our history taking to expand out our inquiry to literally everything that’s going on. You know it’s a daunting process and it takes time. It also takes retraining in how we think about how to get the patient to talk to us, The patient’s been trained to minimize their symptoms, and only think about what their dominant symptom is.
So, they’ve been trained to minimize. We’ve been trained to focus on one thing. This is all about defocusing on that one thing and understanding and appreciating the full constellation of what this patient is going through.
Dr. Gordon: The problem we have as a clinician, is patients have either learned to minimize because they got tired of being in what I call the “Doctor, I have …” role – where the doctor tells them what they are experiencing can’t possibly be, because their symptoms can’t happen from the minor event they are talking about.
The other problem is when patients come in, and all they can report are diagnoses that they have come up with or they’ve been given, not realizing that we really need their range of symptoms.
Dr. Anderson: They can have an idea and call it a name, but we have to challenge that. We have to get into the details here.
Coming to Terms with Unexpected Issues
Dr. Gordon: Which is very interesting, because you know, we do see a lot of people who come with a diagnosis of chronic fatigue who we feel have underlying tick borne disease. And that’s a good point. The people who have chronic fatigue, but they never get sick. Doesn’t mean they have Lyme, but you should really start to think about it. That’s a very difficult thing.
The hardest part that I find for patients who have struggled to find a diagnosis for many years, and then finally some practitioner or the patient themselves look at the list of symptoms and say, ‘Oh, I have chronic fatigue.” Then they come to see me, and they really don’t want to hear that maybe they have Lyme. You know, they get very upset at that, and you know that’s always a little difficult. That moment of having to say, “Well I do see Lyme often. I’m hoping that’s not my Lyme colored glasses today, but you do sound like that’s what’s going on.”
It’s human nature, when you have been struggling to find out what’s wrong with you for a long time, it’s hard to hear that it might be something a little bit to the left or right of what you thought. I want to be clear that it isn’t always tick-borne disease, but tick-borne disease often is a trigger to what can turn into CFS, and needs to be investigated.
Dr. Anderson: It reminds me of back in the 90’s, when we were just beginning to appreciate the role that the tick-borne infections had. At this point I was thinking so many people were fungal infected or had Candida, and their gut, their GI system was a mess from chronic fungal infections. I would begin to realize this is a Lyme patient! I would say to these people, “You need antibiotics.” They would say to me, “No way I can take an antibiotic with my gut, with my Candida, it’s just going to make my Candida worse.” And they would come at me with a crucifix like I was a vampire. This was suggesting a life-threatening thing to them, and then they finally relented to take an antibiotic and they would be better and their gut issues would improve.
Dr. Gordon: This is one of the biggest problems we have had. We’ve both been doing this long enough to remember when in the old days everything was hypoglycemia, and then we had a parasite thing back in the 80’s, and then everything was Candida, and then everything was Lyme, then everything was heavy metal, and then everything was Babesia. We had to treat Babesia before you did anything. And then Bartonella, and then there was chlamydia.
It’s just the point that these are all out there and they are all real, and there are people where Candida or Mold is their problem. But just because you bloat after you eat sugar doesn’t mean you have Mold. No matter what is causing your bloat, if you avoid sugar you will feel better. Also, wheat. This is what the great dilemma is.
Dr. Anderson: It is again on the practitioner to not jump at that one symptom which seems to be a herald symptom. We need to continue to step back and not be so convinced about what’s going on and continue to accumulate information about the patient. Really, it’s about how is this patient engineered? Understanding the patient. Is this a patient who is genetically weak? Is the genetic system being activated into unproductive cycles? The suspicion that its more hormonally based? There are all sorts of avenues that we have to continue to be inclusive of.
But going back to the history. History is also about the progression of illness. It’s very important to me to know. how were they as a person before they got sick? When did they get sick? How were they first sick, and then how did that illness evolve over time, because so many of these are multi-dimensional issues. I’m convinced, and I think the community at large that acknowledges Lyme as a chronic illness along with co-infections is convinced that when you get a Borrelia infection you get all of these. They’re all there. The Babesia, the Bartonella, all the co-infections the tick incubates in the belly, they all come through. It’s just dependent upon the virulence of each of the specific pathogens.
They could have a very weak Babesia infection and a very strong Bartonella infection. Babesia can be there, but not affecting them, and Bartonella is then being the more dominant thing for them. And so, they’re going to have predominantly Bartonella symptoms. The point being, we have to continue to not simplify and continue to expand our thinking. It’s important that when we say Babesia, we’re really talking about a symptom presentation. Is it really just about Babesia? No, I don’t think so. I think there’s lots of variance within this Babesia community and I like Joe Burrascano’s idea that he brought up with Bartonella, and Bartonella-like organisms. Maybe they’re not Bartonella organisms, but they can act like Bartonella organisms. Babesia is the same way.
Dr. Gordon: There are whole different species and the problem we have is that there are lots of bugs we don’t know who they are. The microbiology is not yet there. The problem we have is that a lot of these things are hard to find in the bloodstream. The other problem is that these bugs often take up residence in the tissues and even when we do the PCR in which we are looking for tiny pieces of DNA in the blood and they’re not finding anything, but it doesn’t necessarily mean they’re not there.
Dr. Anderson: And that speaks to the inadequacy of our testing, which makes it even more beholden to us to really take a good history, trying to get as much information historically and symptomatically as we can.