For those of you who follow my blog for general health and nutrition tips, then I apologize in advance for today’s post. Today I am posting about a very specifically Lyme-related topic, and one about medications at that! But it’s important information to write about, given so many people are struggling to get adequate and appropriate treatment for a very debilitating, chronic condition. I’ve been doing some looking into IM Rocephin as an alternative to Bicillin and have got some encouraging information so far.
Last week I wrote a post on 5 things that may be clues you have Lyme disease. This week I’m coming at it from the opposite direction and talking about 3 things you may never have had (but still have Lyme disease). There are so many misconceptions around Lyme disease, including its diagnosis and treatment, and some of the historical factors. So read on for these 3 things and let’s try to clear some of it up.
Could pyrrole disorders be holding back your health? Pyrroluria is a condition in which the the body produces excess of pyrroles. Pyrroles are normally produced in small numbers as a byproduct of hemoglobin synthesis and excreted in the urine. However, some people produce an abnormally large numbers of pyrroles. These pyrroles then bind to pyridoxine (B6) and zinc, causing them to be excreted from the body, with deficiency states arising as a result.
Pyrroluria creates wide range of symptoms – physical, mental and emotional – but is particularly associated with emotional and psychiatric issues eg autism, ADHD, behavioral issues, depression, anxiety, aggressive behavior, schizophrenia. Physical symptoms include poor digestion, poor appetite especially in the morning, low tolerance for protein, white flecks on the fingernails, tooth and gum problems, motion sickness, allergies and fatigue.
I’m often asked these questions by my patients – can I ever cure Lyme disease? Will I get my life back? Will I have to live with this forever? What level of functioning will I get back? They are all great questions, and of course there is no one black and white answer that will be true for everyone. So what does recovery from Lyme disease look like? Is there really ‘cure’ or just remission? And is there even remission?
It is generally accepted in the world of chronic Lyme that we are not looking for ‘cure’; that once the bacteria are in the body, there will always be some traces of them, much like if you’ve had mono (or glandular fever), you will always have some signs of Epstein-Barr virus. Therefore 100%, no-bacteria-left-at-all, never-have-to-think-about-it-again, full-tilt ‘cure’ probably isn’t realistic. Having said that, in acute cases of Lyme that are diagnosed and adequately treated right away, eradication is possible. But in the population I work with, that didn’t happen and their illness has become chronic (> 1 year).
So that might be the bad news. The good news is that I have definitely had patients who have achieved remission – meaning, symptom-free, back in their lives, not having to do any Lyme treatment at all. Most will continue supportive supplements and therapies, but will not actively have to treat for Lyme disease..
In these cases, after doing a little happy dance, I do have a conversation with my patients about ongoing care – self care. I encourage people to continue with basic supplements such as vitamins, minerals, essential fatty acids, probiotics; and then more supportive supplements such as detox helpers, herbs that manage inflammation, and immune strengtheners. The ongoing maintenance is crucial to them staying well. They also will want to manage diet and lifestyle factors – they may not need to be as strict diet-wise as during the height of their illness, but I still recommend staying away from gluten and other inflammatory foods, minimizing toxins, sugars, colors, flavors etc. And they’ll need to watch stress levels, sleep habits and a good balance of exercise.
One thing I’ve noticed is that many people, once they feel a bit better, go off and over do it – they don’t want to be limited and restricted any more, and want to get back to the things they have missed out on, often for years. I totally understand that (and some is born out of necessity such as getting back to work), but I do try to encourage people to pace themselves. Doing too much too soon can stress the adrenals, dampen immune function, and leave the individual more susceptible to symptoms returning.
In fact, I’ve had a good handful of patients who were in remission, then the following year experienced a return of symptoms. Terrified of relapse, we did some testing, only to find their adrenals were totally shot, with depleted cortisol levels – and that is what was causing their symptoms. We worked on their adrenals using herbs, glandulars and nutrients, and their improvement returned. I’ve had other patients where Candida clean-up was needed post-Lyme treatment, and Candida caused residual symptoms that mimicked the Lyme symptoms.
There are also cases where I see Lyme patients achieve a certain level of improvement, but still experience some ongoing issues related to their Lyme. Being quite honest and realistic, for many chronic Lyme patients, the goal is to learn to live with their illness – minimizing infections and minimizing symptoms where possible, but also accepting that they might always have some symptoms, that their symptoms might wax and wane depending on what’s going on in their life, and that the pursuit of complete remission just might not be realistic. It’s a fine line between keeping the treatment efforts going, trying new therapies or modalities, taking all the pills and potions every day; versus backing off and simply trying to achieve as good a standard of living as possible given the circumstances. That is where treatment becomes as much a matter of mindset and emotional capacity – it’s hard to stay the course and stay positive during such a marathon. For some people there is freedom in just saying “this is where I’m at and it’s ok; it’s not where I wanted to be, but it’s where I am”, then adapting their life to work for that set of circumstances.
I tend to be hopeful and optimistic – people come to see me as a doctor because they want to get better; and I put 100% effort into helping them achieve that. I have spoken with other Lyme patients who have done lots of treatment and now just manage things themselves – either they don’t feel that the therapies they were pursuing were really helping beyond where they were at, or they just got fatigued by the massive effort required to continue comprehensive treatment regimens. Or they got to a point where they knew their body, their symptom patterns, and the herbs, supplements, medications etc that work for them and how to implement those things on their own.
The bottom line is this – recovery from Lyme is possible. I have known patients who are comfortably in remission and have been for several years. Can we say that they never have to worry about Lyme ever again? No, we can’t say that. If their body experienced a big stressor, for example, such as an accident, surgery, loss of a loved one, house move, etc etc – they might be more susceptible to relapse. Similarly if they were to be exposed to mold, for example, they might be more susceptible to negative impacts from that. But they’re back in life and not thinking about Lyme on a day-to-day basis.
Other patients I know are just making friends with their illness, and coming to terms with it; realizing that they may always have some level of debility, they might always have to make accommodations in their life to cope with it, and that that’s just the way it is. But for some, that brings a sense of freedom and relief from the endless pursuit of recovery and remission. For some, 80% is fine, because it’s 50% more than they had before.
I think the mental-emotional dance of keeping hope for remission, versus acceptance of where one is, is one of the most challenging aspects of chronic Lyme. I have seen some very sick people get well, so I’m always one to encourage people to keep going, to find the combinations of treatments or modalities that work, and never give up. But that’s easy for me to say and I realize it’s a very personal journey. I am also a big fan of counseling to help one navigate the mental-emotional aspects of recovery including realistic expectations, coping mechanisms, adjusting to life circumstances and coping with fear of relapse.
Hopefully, eventually, chronic Lyme disease will gain more acceptance in the medical community and by the health agencies, as only then will we be get more actual research to help us develop more effective treatment strategies making recovery from chronic Lyme more attainable.
The journey of recovery from chronic illness is often long and arduous, requiring commitment, tenacity and unwavering resolve. I see people who make this journey, in fact my “day job” is to walk this journey with people, designing the treatment plans that I think will get them better the quickest, with the least side effects and bumps along the way. One this I have seen is how profoundly mindset impacts their journey, and I believe that there are three stages of recovery from a mindset standpoints. These are the phases I see relating to mindset in chronic illness: Victim to Survivor to Thriver.