My colleague, Joey Lott, and I have a private forum where members give us all-embracing feedback on our book draft. The book we intend to write will demonstrate the obstacles and approaches to recovering from Lyme, touching on each angle of its controversy, and as we continue to get feedback, I’ve realized two things:
One: that we need to make room for a section on healthy skepticism and encourage research without encouraging solid self-diagnoses.
And two: that I need to personalize my writing, even dare express my opinions because, apparently, people want to know them.
I’ve written plenty about the pros and cons of long term antibiotic usage for Lyme and co, for example, here and here, and I’ve even made it clear that I opted to not take antibiotics for my illness – and still my readers are not sure what my opinion about antibiotics is! It kind of blows my mind that I can write so much about one subject without making my conclusions known. I don’t know if it’s a good thing or bad thing but apparently it is a thing.
I’ll attempt to do both here. My first real “opinion piece.” No textbooks harmed in the making of this article.
I am trying to be sensitive in my writing and consider the different sides to Lyme, but I’m lacking the confidence to relay my opinions. I’m all for starting a ruckus with views, but I do try to avoid undermining people’s choices. I’m not a fan of opinions – I’m more in the camp of “the only thing I know is I know nothing.” It’s bad – to the point where my friends and I discuss if 1+1 really = 2 (math is practical, factual, but also, dundundun theoretical). And how can I form a fully functioning opinion on a matter such as Lyme when there is no consensus anyways? The evidence is lacking, and although I have collected quotes from LLMDs and naturopaths from all over the world on what they think works, how do I trust their words when many of their patients have become physically and financially far worse off since handing them the reigns of their health?
I want to clarify to – not confuse – readers, yet I can’t help but look at every angle on Lyme and hold off on sharing my conclusive opinions. Consequentially, my writing is left “thesis-less” (not a word I’d ever vocalize for fear of getting tongue tied). On one side, we have the camp that believes chronic Lyme does not exist; on the other, we have LLMDs diagnosing everyone and their cousin with Lyme deprived of proper diagnostic tools. I’m not in either of these camps, and if you came to me and said “Yessi, my Igenix test came back positive, my CD57 is abnormal, my vitamin D is abnormal, live blood cell analysis shows bacteria in my blood, and I have every Lyme symptom known to man” I’d still be hesitant to give you a hard Lyme diagnosis. The diagnostic tools available are weak, and Lyme-like symptoms are so broad that you could also have an array of other infections or autoimmune diseases. But I do believe, most definitely, that chronic infections exist and can be remedied. And I do have opinions about antibiotics, that, even though they are just my opinions, my readers seem interested in. It’s flattering, actually. Now, I just need to get my opinions across without sounding pompous.
Rants In Yo Pants
My opinions…are…complicated. Sorry!
I guess I feel strongly that maintaining balance is key to getting off antimicrobials (if that is the route you’ve taken, they work, and you want to get off without relapsing), and that stress and expecting the worst don’t help anyone. I definitely believe that people who focus on the negatives and make their lot in life sound awful won’t get better as quickly as people who have the placebo power of “yes I can” on their side.
And yes! People absolutely need to think for themselves, and not guru-cize their doctors. Yet… as you can see online, in forums, and in the opposing views of so called “experts,” tons of people self-diagnose and self-medicate with unadulterated confidence; I don’t want to encourage people to guru-cize themselves either, if that makes sense.
My opinions are kind of works in progress because I hear people’s success stories with long-term antibiotics (a treatment method I dislike). Then I hear of people who literally fall apart when they stop antibiotics, not being able to walk until they get back on their antibiotic-saddles. I read a lot seeking both support and opposition to my evolving opinions – from Ray Peat, Matt Stone, Mercola, and Kresser, to forums like HealingWell and MDJunction to introductory medical textbooks simply to understand the basics and aspects of anatomy I’ve never thought about. I don’t even like all the above mentioned sources, but I read them because they are popular, and they influence many of us to medicate the ways we do.
I’m confident in my findings because I’ve tested them out on myself, and so far, I am the healthiest Lymie I know, building up the energy to do some serious weight training and to dance around like a nut, because sometimes, I have that much energy to expel (as long as no one is home of course). I’m confident in what works for me and how to investigate if I’m feeling “off” but still my opinion is…”it’s complicated.” Someone can have the exact same infection as me, but their genome and their environment being different, my protocol won’t work for them. Some people are starving on extreme Lyme-diets and, like me, should eat more carbs. But depending on their gut bacteria and genetics (how much amylase they produce, for example), they might need a different tactic.
How am I doing so far? Now that you know that I am doubtful over 1+1=2, can you at least give me credit for having some opinions?
I have more, promise. But I’m also still trying to work my way around the Lyme maze, too. I anticipate twists and turns ahead, and my opinions can’t remain static if I want to find my way around.
There’s an opinion: we are all oh so very truly ignorant. Now here are some things I’m too confused about to have even meek opinions on:
The chronic Lyme vs Post-Lyme debate..
And the its-definitely-Lyme-for-sure vs some-vague-infection debate.
These are head-scratchers.
I have done live blood cell testing a few times over the last 3 years, and I can tell you that when I go in for the test after weeks of energy, relaxation, climbing, eating well, and sleeping well, my blood looks sanitary. When I go for testing after weeks of fatigue and stress, it looks like I have squiggly guys dancing around my cells under the microscope. Yet – I’m still sceptical enough to not preach to everyone to go out there and find a “blood guy” to examine their blood. (I mean, I recommend it to basically everyone during consultations, but not without warning them of its controversy in efficacy). I think the only way I will trust blood cell analysis is if (and when) I am the one testing my own blood. And I think it’s very difficult to write about “must try” treatments and diagnostics, when everything is so shady. I think the most legit book I could write is honestly a book of poems when it comes to this stuff!!
I will put that on my to-do list: write a book of poems on the diagnostics and treatments of Lyme and co, and call it Squiggles In My Blood or something ridiculous like that.
But in all seriousness, in my opinion, I don’t think that any available diagnostic tools can confirm for sure that you have Lyme. I don’t think any one doctor will solve your problems, nor do I think they are all genuine people, unaffected by how much money they make from you staying sick as long as possible. And I don’t think long term antibiotics are the best option for most people. (By now, I hope I’ve made it clear at last, that I am not keen on long term antibiotics.)
Some LLMD’s diagnose Lyme with very little knowledge of their patients’ medical history – sometimes without positive Igenix or other Lyme specific testing. I think it is unethical and fraudulent to see a patient for thirty minutes, have them leave with 6 months’ worth of thousands of $£€ worth of pills and potions and repeat that again and again for years to come. I think it’s even more insane when their patients feel no better but much worse in every way on antibiotics, so as a consequence, their doctors persuade them that they need a different combination of antibiotics – or that they are herxing and it’s a good thing to feel worse (for months or years) before feeling better. To tell people it is normal to herx for months is the tip-of-the-iceberg of shady. Herxing, is the result of your lymph glands not being able to detox the dead debris of bacterial invaders as quickly as they have been killed off. You’d think that after a few days of detoxing, there’d be light at the end of the tunnel, no? Herxing for months sounds like bull, to me (again, in my pompous opinions here people).
So there you have it – I do not think antibiotics are practical first choices of defense, and actually they are quite toxic to be on for long durations. Studies show that after a round of antibiotics, your chances of catching a cold increase. Why? Because they lower your immunity – most likely as a result of mucking up your gut bacterial ecosystem and introducing toxic compounds into your liver and body. Recovery from Lyme, being a systemic and chronic problem – if that even is your problem – takes more than bug killing (hence the name of the site: It’s Not Just Lyme). We forget the importance of the immune system, the digestive system, the thyroid, the metabolic pathways, the detoxification pathways, the unique genetics that instruct our bodies to react to infections and other foreigner intrusions, the cellular communications involved in neurology, and even the obvious stuff like the importance of eating nutritious foods, de-stressing, sleeping well and asking ourselves “is this medicine jiving well with my bod?”
Balancing these core processes in your body are FAR more important than taking antibiotics. Taking antibiotics on top of a sluggish liver and slow cellular metabolism – in my very, very solid opinion – is, going to make anybody worse off.
I am well aware of the uniqueness in every individual case. Our genetics are like finger prints, as are our infections – of which there are countless types. There is absolutely more to recovery than killing an infection – and honestly, I can’t help but think your infection got as bad as it did because of fragile foundations of your personal constitution; core processes in your body in need of some construction. Once we add our individual environmental factors on top of that – whatever “that” is for you – any experts who cannot genuinely say, “I am a robot, I am literally a computer possessing all human knowledge,” should not persuade you to guru-size him/her, because even if they’ve had a thousand patients before you, they’ve never treated you with all of your specific fashionable baggage. So keep in mind that you and your doc and your bod probably won’t get it right, right away.
And this is why I’m uncomfortable giving my honest opinions to my readers: there are too many genetic and environmental variables, and from the limited resources available as well as the limited space in my non-robot brain, I’m still learning about all of them.
I think it would be easier if I just told you what I’d do if you were me:
If you were me, I’d tell you to first chill out and try to be patient. Ask around and you will quickly learn that Lyme is a marathon, not a sprint. The diagnostic tools you used (Igenix, CD57) are weak, but let’s go with it and see what happens when you start treatment. First off, how are you going to go about this? Antibiotics are obviously an option: do you want to go that route? No – because once you start, your infection will become resistant to antibiotics, and if biofilm does exist, then antibiotics will also encourage the production of biofilm as the infections attempt to survive. Then you will need to be diligent with cyst busting, not to mention c. difficile prevention, and making sure the toxins from the antibiotics stay in your body long enough to kill infections yet are detoxed quick enough to not allow all your other organ and body systems to fall apart. So avoid antibiotics, at least initially, and probably throughout the entire recovery process. Plus, remember that time you took Clindamycin and it destroyed your gut? No, before you even think about antibiotics, heal your gut, and make sure you are digesting food properly (do you need more acid or enzymes, or to cut out or add certain foods?). This in conjunction with exercise might kick-start a lousy metabolism, and your metabolism will make or break your progress. Think about it – your cells need to metabolize (or eat) carbs, proteins and fats, nutrients, and even foreign invaders for you to have energy: energy is life! Do you really want to kill off .99% of your infection, get off antibiotics feeling worse off, and have no energy to stop that .01% from multiplying? No, get your metabolism working, and from there, your detoxification pathways, and keep building yourself up before breaking yourself down further.
If you were me, I’d tell you to do a bus load of research. Seriously, pick up an anatomy textbook and study it. If you don’t like reading, listen to audio-textbooks (you can try a free trial with Audible). Do whatever you can to understand what hormones, organs, actions, etc, produce and expend energy in your body. What is physiologically responsible for your existence? How do you breathe? How does food become energy? What the heck is a duodenum? Better yet, what cells and processes are involved in fighting infections? Look it up with interest. Take notes. And then go to your doctor and get a pile of blood taken and tested for specific biomarkers. Nutrient and mineral panels, hormone panels, iron panels, inflammatory markers, white blood cell count, red blood cell count, CD57, thyroid markers, antibodies for allergies, infections, molds and whatever else you suspect you could have. Ideally, be from Canada or a country where it’s mostly free. If not, do what you can afford. Really take the time to look for abnormalities first, before pumping all your money into antibiotics and other meds. After all, even if Lyme is your only problem initially, the damage it does to your body requires repairs, and if you feel crummy, you will probably find something to work on through your bloodwork. Look into your abnormalities and find cheap, holistic ways to balance them. Get inflammation down, at the least. Fix your hypothyroid, at the least. Cut out allergy foods, at the least. Of course, eat well, sleep well, de-stress, chill, don’t worry, be happy, be proactive, and exercise (and by this I mean challenge your muscles with resistance to avoid deconditioning at the least) when possible. After all, these actions can strengthen your immune system, and your immune system can help with the infectious load. On top of all of this, figure out what medical privileges you qualify for through your work, government and insurance company.
If you were me, and you really wanted to take something antibacterial, do all of the above, continuously, and then try introducing something mild, like oregano, black walnut, cloves, or cat’s claw, for example. One thing at a time. If you don’t feel good on it after a few days, try something else. Sure, it might be a herx if you feel crummy for a day or two, but anything more than that and you might want to re-evaluate. After all, herxes can be mistaken with adverse drug reactions, and ADR’s stunt recovery. If you feel really good, and clear headed after a few days on antimicrobials, well, there is a good chance you have Lyme, for realzies. Some antimicrobials are anti-inflammatory as well – so still, this is not hard evidence that you have Lyme. But hey, it’s working so keep it up.
If you were me I’d tell you to exercise! Exercise increases mitochondrial activity and it gets glucose into your muscles. It’s a great reason to eat carbs – because hard-working muscles soak up carbs(rather, their converted form glucose) to use for energy before they get stuck in transit where infectious agents can feed on them, as so many of us are worried. I can definitely understand that people feel crummy eating sugary, carby foods when infections are present when they don’t use their muscles. Even if infections are not present. Too much glucose minus too little energy expenditure is a recipe for hypoglycemia and other gluco-type-illnesses. But keep in mind that glucose is only one form of food that infections feed on. Amino acids, fats; they can be used as bug food in their own ways, as well. Ultimately, we need proteins, fats, and carbs for our bodies to function. If you were me, I’d definitely suggest that you eat your carbs and weight-train in order to increase the effectiveness of carbohydrates’ function – even if that means doing 2 minutes of squats in your kitchen, to start. Anything is better than nothing.
I’d look into different treatments and get on forums (here are some). There are new discoveries every day. Sometimes, we try one treatment and it turns out to be a horrible mistake. Sometimes it’s a lifesaver. Don’t just experiment with antibiotics; experiment with methods of detoxing, with your macronutrient ratios, with vitamins and amino acids, and experiment by stopping the use of one drug at a time as you feel stronger and stronger. Don’t freak out if you relapse, as I know you’ve been prone to doing in the past. Chill! You know what to do to feel better at this point. Go do it.
This functional medicine approach will only help, and then whatever else remains can be treated allopathically. Actually, I think a lot of people would find that they don’t have an
y symptoms and that they might not have ever had Lyme to begin with. If only they’d put in the work to balance themselves out before pulling out the pharmaceutical big guns.
So there you have it: my biases and opinions all in one.
Edit: I may have undermined a few quite accurate diagnostic tests. Dr. MacDonald created a DNA probe that diagnoses 5 different strains of Borrelia, but he cannot get this test off and running because of a lack of funding. There are some other culturing techniques used in labs (after all, the bacteria was discovered under a microscope), they just are not available to the public.