Dr. Amy Nett: That’s tough. Okay. I think I’m in an incredibly fortunate position where a lot of our patients come—I mean, it’s a good position, and not a lot of our patients come and they’re often at the point of like just do whatever you need to do because I have to get better, so 90 percent—I would say 80 to 90 percent of our patients probably say, “Fine. Let’s just do it.” That said, the testing I recommend is definitely part of a conversation during the initial consult of what’s your interest in testing, and what’s your budget? So, when I recommend tests, I am taking that into consideration because I’ve had patients where I’m like—you know, because I tend to be a little bit more cautious about money, I think, so I’ll say, “Well, let’s just do this and that test.” I’ve had patients say, “Oh, but I read about this test, and I read about that test.” I mean, we have some patients who come, and they’re like, “Let’s test everything. I want to know everything we can.”
I think what you’re talking about is the much more common scenario of, “Wow. Like what do we absolutely need to know?” What I do in that case is I’m very sequential. That means the first set of tests is going to be a comprehensive blood panel, number one. Number two, it’s going to be either a stool test or a SIBO breath test, right? Because let’s say the stool test comes back, and there is dysbiosis. Great. I’m going to do an antimicrobial protocol, and it’s doesn’t matter if SIBO is there. If the symptoms seems more like SIBO, then I’m going to do a SIBO breath test first. If it’s positive, then I’m going to treat with an antimicrobial protocol. It doesn’t matter if there is dysbiosis to the same extent.
If the test that we choose as the first one comes back normal, then we go to the next test. Let’s say, for example, I think it’s SIBO. We do a SIBO breath test, and it’s normal. Okay, let’s do Doctor’s Data stool test, and I would sort of go down that pathway one step at a time. That’s an option. Again, it’s kind of a minority. Most patients who come to us are willing to do the comprehensive blood panel, one or two stool tests, SIBO breath test, and the DUTCH test. I would say that’s pretty standard, and most people are willing to do it. Again, not everyone is, and probably ballpark 10 to 20 percent of patients. So, no problem. We do it sequentially.
There are other tests, though, and then when you’re talking about something like this who, you know, mast cell activation syndrome, eating let’s see—one, two, three, like, five foods? Those patients, yeah, I’m going to recommend more tests, and again, you can be systemic here. What’s her history like? How old is she? Because the places I would go, if you’ve done like the gut testing—man, metals, tick-borne illness, chronic inflammatory response syndrome. I don’t know for the MCAS if you’ve used cromolyn sodium, like if you have her on any prescriptions, but when I have patients like this who are just really clearly mast cell activation, I’ve had some success with both cromolyn and then using another antihistamine. It might be Claritin or Zyrtec, something over the counter like that, and using the combination of an antihistamine and cromolyn, I can kind of control their symptoms. Sometimes it’s hard to even start treatment in these patients because they are just so sensitive, and as soon as you start treatment, then they start feeling worse.
If you haven’t, you might try using those, but in terms of where I would go once you do the basic functional workup, and that should include a cortisol workup as well, but metals would be my next place. If she has risk factors—well, if she has a history of mercury amalgams, then the mercury tri-test. If not, just do a blood metals panel, probably from Quicksilver or Doctor’s Data. You could even do LabCorp and just do the basic such as lead, cadmium, arsenic, and mercury, and just get total levels for those four, and I think that would be pretty good and fairly cost effective.
You’re mentioning the GI inflammation, so I’m guessing that means you’ve already done like a Doctor’s Data stool test on her. Yeah, find the inflammation. Find what is triggering her immune system, and it might be—these patients I find are often a chronic inflammatory response syndrome patient, a la Dr. Shoemaker. So, if you’ve looked at the survivingmold.com website, if you want to order those markers and kind of get her connected with someone who is more comfortable with CIRS, but again, that’s going to be really expensive. The lab markers themselves are maybe a couple hundred dollars if you do something like TGFB1, MSH, C4a, VEGF, and you could do like ADH and osmolality, and if four or five of those come back out of range, then it might be chronic inflammatory response syndrome and have to go down that pathway. So, it’s kind of tricky.
You know the general question of what to do when patients don’t want to do much of the testing, just be as sequential as you can. In terms of patients who opt not to do any testing, I haven’t had that come up. I’ve had patients at least, at a minimum, do a blood panel, generally a blood panel and a stool test because otherwise if I don’t have testing data, I just don’t know where to go. Generally if all they want is diet and lifestyle, then they’re probably not going to come, you know, to an M.D. They’re probably going to do like a nutritionist, an RD, or something like that. Yeah, it’s tricky. It gets expensive.