Last month, I presented part one of a two-part interview with Lyme literate nurse practitioner, Ruth Kriz. If you missed that article, please click here to read it. In this month’s interview, Kriz furthers her discussion on Lyme symptoms, information the medical community may not know about, recovery, relapses, and patient resources. While these articles reflect Kriz’s approach to treating Lyme disease, it’s important to note much of this content can serve as talking points when you are communicating with your healthcare provider.
Following is part two of my interview with Ruth Kriz.
Jenny Buttaccio (JB): In the patients that you see, is there a “typical” presentation of what Lyme looks like?
Ruth Kriz (RK): Often, these infections have been camping out in a person for a very long time. Then, the immune system takes a significant hit, and the [infections] bloom. The CD 57 is a natural killer cell that takes the hit if someone has been infected with Lyme. The lower the number, the longer it has been since the original infection; it does not correlate to how sick a person is. But, it’s a clue as to whether I’m looking at an infection that has been there since childhood, or a more recent one. The people I see that have a lower CD 57 have had a longer time for these infections to settle into the body. [The infections] can be deeply entrenched in the nervous system, and patients can have symptoms like brain fog, word finding difficulties, and muscle twitching. In the patients with interstitial cystitis, the infections could be in the bladder or the nerves going to the bladder. I tend to see more complex symptomatology and the need to treat longer in people who have lower CD 57’s, than people who don’t.
JB: Are there some areas regarding Lyme disease treatment that you feel some clinicians don’t fully understand?
RK: They don’t understand biofilms or other forms of infections, like the cyst form (of Borrelia), that virtually become undetectable to the immune system. The biofilms wall the infections off, and once they get established in the joints and nervous system, they can take a heck of a lot longer to root out. If they’re not addressed, you will have relapses. The infections will continue to multiply at a very slow rate over an extended period–and that could go on for years–before it’s enough to make you symptomatic again. Some people do a better job of breaking down biofilms than others, based on a variety of genetic factors.
Also, maybe other clinicians aren’t factoring in how long the infections have been deeply entrenched in the body? The medical system typically works on protocols. For example, if you come to me, I give you this medicine for (a specific) length of time. Then, we go after these infections for that length of time, and you then “pop out” on the other end and declare that you are now well. The problem is that doesn’t work for Lyme, because everybody presents with a different infectious load, a different number of co-infections, and a different number of biofilms. So you can’t just march everyone through the same program and expect the same response.
Finally, many physicians aren’t aware that Lyme depresses some of the immune markers that are used to diagnose it according to CDC standards. Therefore, patients have a lot of false negatives, and physicians don’t believe that the Lyme is there, when, in reality, it is.
JB: Do you have any insights as to why a patient may not be getting better or why they might relapse?
RK: I have a couple of theories about it. I think it’s difficult to know when the Lyme is adequately treated. One reason I like the ISpot Lyme test is that I can tell if we have a solid negative, equivocal, or positive (response), and how positive (the response) is. So I have some metrics to tell me when we’ve reached the negative point; and that is often long after the symptoms have receded. Sometimes, when you’re very sick and start feeling better, you think you’re done treating. But the reality may be that you’re not.
The second issue in chronic Lyme disease is that just because you’ve been diagnosed with Lyme doesn’t mean that you don’t have other co-infections making you sick as well. The last tick I sent out for DNA testing came back with 43 tick-borne infections. Many of the tick-borne infections that tend to persist–we’ve got Bartonella, Babesia, Ehrlichia, Anaplasmosis, Brucella, Rocky Mountain Spotted Fever, Mycoplasma–competitively inhibit each other. When you knock the big ones back, some of the little ones become bigger players, and people continue to be sick. Just because you’re still sick doesn’t mean it’s because of the Lyme. It could very well be an undiagnosed coinfection.
JB: We know many Lyme patients are financially strained. What steps has your office taken to help Lyme patients?
RK: Patients have already spent tens of thousands of dollars before they ever call me. We have an account with the Professional Co-op so that if people don’t have health insurance, it will pay for some of the routine commercial lab tests; we can get discounted rates. We also try to figure out which tests are a priority so that it isn’t such a big expense up front. I try to use the labs that accept insurance, but some of the specialty labs don’t fit into the mainstream picture, so they’re cash only. Some of the labs I work with have been very generous in allowing us to select people who need the testing but really can’t afford it on their own.
There are a certain number of pharmaceuticals that we can provide to people at extremely good rates as well. It’s not a huge selection, but it’s better than zero. I also have a couple of connections with some pharmacies that give us samples. Prescription Hope has been very generous in helping people if they qualify to get medications at lower costs. I do what I can; it never seems to be enough because the needs are always surpassing the resources.
Finally, don’t discount the efficacy of herbals. There are some very affordable, user-friendly approaches. Herbals have great advantages in that you can titrate the dose by the drop. Therefore, you can control how much herxing goes on. [Herbal protocols] can be a primary therapy, as well as, an adjunct therapy. It can be ideal for children; many flexible spending accounts will reimburse for herbals.
JB: Thank you so much for willingness to do this interview. Is there anything else you’d like Lyme patients to know?
RK: Yes! When you start killing many of the tick-borne infections, they release toxins. These toxins are pro-inflammatory, and they will cause the areas of your body where the infection has been to flare up. This is where detoxing becomes even more important. Pulling the toxins out of your body and helping your liver get rid of them is going to mean you can continue treating more effectively and not have your whole life disrupted because you can’t function.
Finally, there’s a myth out there that Lyme disease is untreatable, that you’ll always have it, that people don’t get well, but that’s not been my experience either personally or with the vast majority of my patients. I think it takes persistence. It takes commitment. It takes educating yourself about how your body responds to treatment and learning what the roadblocks are for you, but it’s possible to get better.
Jenny Lelwica Buttaccio, OTR/L, is an Occupational Therapist and certified Pilates instructor whose life was transformed by Lyme Disease, Chronic Fatigue Syndrome and Interstitial Cystitis. She is creator of the DVD, New Dawn Pilates: pilates-inspired exercises adapted for people with pelvic pain. Jenny is a health and wellness advocate and blogger who writes about her journey on [lymeroad.com] as she continues to pursue her personal healing with the support of her husband and two senior beagles. You can find her on Instagram: [jenny_buttaccio] or Twitter: [lymeroad]