10 Pieces of Wisdom for Those with Chronic Lyme
Words from a Lyme Veteran of 8+ Years
No, this isn’t another article telling you what you’re doing wrong or promising to get you better. What it is, simply, is a collection of 10 (yes, the 10 is arbitrary -- could have easily been 9 or 14) wise understandings and principles on the best way to approach the many facets of treating and getting better from chronic Lyme.
Some of these wisdoms you may have learned on your on, some you may have heard before, but worded differently, and some you’ve yet to experience but may someday. These are the words from the mind of a person who has dealt with the condition (or some ever-changing, but as of late, unprecedentedly improved condition) for 8+ years. A restless and ever-problem-solving, humble mind, that isn’t the greatest at what it does and has many flaws, but has found some unprecedented resolve in the condition known as chronic Lyme disease.
You’ll find these wisdoms tend to overlap one another, which is to be expected in treating a condition in which nothing is separate, autonomous, or disconnected from the rest. A lot of it will be intuitive, some of it will need a second thought; parts will be sad, raw, and real, others will be honestly happy and instill a new hope.
In the end though, as with all Tired of Lyme aims to do, we exist to just be a beacon of knowledge and understanding, to some extent, for others who are dealing with chronic Lyme disease, improve their lives in some way, and to reinforce the efforts we will always have, to find a solution.
Yes, that was all so lovely, true, and partly cliché -- possibly off-putting in some manner -- so here’s some raw honesty for you to show that we really care: We haven’t found an all-encompassing solution yet to get over chronic Lyme, we don’t know if we ever will, but as one unit of many, we are looking as well, and as of late, we’re pretty excited at what we’ve found. So to hopefully improve your condition, here are our 10 pieces of wisdom for you, specifically, as someone who has chronic Lyme disease.
10. Don’t Stay on a Supplement or Medicine Forever -- Balance Is Key
When you have chronic Lyme disease, you’re in it for the long haul, and in order to get better, a treatment regimen will be as well. It’s so easy to stay on a medicine or supplement for weeks, months, or even years when the condition you’re trying to heal from does as well. Do not be under the mindset that the longer you’re on a medicine or supplement, the better you could be getting.
Yes, you may need to be on a particular medicine or supplement for a long period of time, but be absolutely sure that you do, and absolutely sure that as time goes on, it doesn’t turn into something of the opposite. For example, liposomal glutathione is a great supplement to help some with chronic Lyme detox, however, if you’re taking it everyday (or more than you need to), and you have an diagnosed issue with sulfur metabolism, the high sulfur in liposomal glutathione will build up and lead to excess sulfur symptoms and issues down the road.
The most famous example would have to be long term antibiotics. Some people with chronic Lyme disease may need to be on long term antibiotics, but remember that the longer you’re on them, the further you destroy the absolutely critical component to your overall health, your microbiome (i.e., gut). The antibiotics may bring down a bacterial load, but in doing so, you’ve allowed fungi to proliferate and cause new symptoms.
9. Identify What Made You Feel Bad and Act Accordingly
Being your own detective can be the difference between having a good and bad day. Doctors can be very helpful in knowing why you feel a certain way, but as the highly sensitive individual with Lyme you may likely be, it is up to you to micromanage your everyday activities and doings.
Let’s say on a scale of 1 to 10, you’re feeling about a 7 or 8 today -- it’s a good day, by your definition. So you take a new probiotic, and tomorrow you feel really bad. Well, it’s not difficult to conclude that the probiotic likely made you feel bad. Don’t just chalk it up to having a bad day and do nothing about it, because if this is your mentality, you’ll definitely have a lot more bad days than good.
It will take a lot of practice, but by being able to not only identify that the probiotic you took yesterday made you feel bad enough today, but by acting accordingly -- reducing the probiotic dosage, or stopping it all together -- you’ve set the course to return to that 7 or 8 you felt the previous day. By playing your own detective and implementing this investigate mentality, you be more in control of how you feel, thus increasing the odds of having more good days than bad, a treasure in the Lyme community that is not always so far out of reach.
8. When You’ve Lost Control, Stopping Everything Will Remind You How Sick, If at All, You Are
You’ve been having a bad day for the past month, and it seems that no matter what you stop or start, you just can’t get control of how you feel. You’re feeling pretty bummed and may have even concluded you’ll have this forever or nothing seems ever to work.
Stop! Timeout! No, seriously -- stop everything (consult your treating physician before altering any treatment regimen)! We know how we feel before we reasonably conclude we have Lyme and begin a treatment regimen, but you absolutely can not rely on that feeling you had 5 years ago for your continued treatment or any changes you need to make today to your treatment regimen.
We get so caught up in the act of taking something -- and assume that the good feelings that will roar remission, will, and can only come about while we’re taking something -- that we have not a clue how we really feel. The constant effects of your consistent, decade-long treatment have distracted you and set you blind to how you actually feel; -- where your health really stands.
So when you’re no longer sure of what to take or not take to get you feeling better, try stopping everything and develop a control. Learn how you actually feel when you’re not taking anything at all because you may find, ironically, that you may not only feel better, but you’ll stay that way.
If you don’t stay that way, then you’ll start up again slowly with one item, develop a variable of how you feel, compare it to your control of being off everything, and proceed intelligently and responsibly.
7. Some Information Is Good, Some Is Bad; Take What You Need and What Works For You
Every doctor, healer, person with chronic Lyme, has a website, blog (yes, even Tired of Lyme), book, newsletter with information that aims to get you better. Some of it is free and some of it costs your first born child. There is so much information out there about chronic Lyme disease, it can all just be overwhelming, frustrating, and make you just want to quit.
Completely understandable, however, you do not need to know it all. Yes, you’ll likely need to spend hours researching to get your Google medical degree, but allocate that time to information and knowledge that make sense and applies to you.
The treatment regimens for healing from chronic Lyme are endless, but for you, with your particular case of chronic Lyme, you may just need a high dose probiotic (always start at a low dosage), supplementation for a gene mutation, and to be bring your vitamin D levels up. Others may need long term antibiotics, to detox mercury and other heavy metals, and the surgical removal of leaky breast implants.
Be wary of claims made my companies, websites (yes, even Tired of Lyme), bloggers; know not just exactly what you’re putting in your body, but be sure -- to the best of your research -- of any negative side effects, and you likely do not need to take out a second mortgage for some advanced, unproven Lyme treatment modality.
Free speech and the power of Google can be the saving grace in getting better from chronic Lyme, but know how to filter through the information, use good judgement and make sense of it, use what you need and discard what you don’t, and never let the edge of the sword facing you get too close.
6. A Lab Test Can Never Measure How You Feel or Determine Overall Progress
In dealing with chronic Lyme disease, you’ll have your share of many lab tests, which can be huge is determining imbalances in your body, sometimes. With lab results, you can adjust your treatment accordingly, all in an effort to move yourself closer to good health and feeling good.
Of all the lab tests you’ve had run, did you take the one that tells you how well you’re progressing with chronic Lyme? I’ll bet you didn’t because not only would insurance not pay for it, but it just doesn’t exist. The human body has a seemingly endless way to be measured quantitatively, which lab tests can sometimes be great at, but do not ever take the numbers of a lab result as an honest reflection for how you truly feel or your healing progress.
At the end of the day, the one thing everyone with chronic Lyme disease knows for absolute certainty is how they feel at this very moment. They may feel disconnected and depersonalized, but they know they feel it. Lab tests can help fill in the tiny gaps and uncover the blockages on a quantitative level, but your quality of health and progress, your qualitative results (always available and no insurance needed), are the true measure for where you stand, or at the very minimum, should always be considered when determining how to move forward with lab results.
5. There’s Always Tomorrow, and If Not, You Won’t Have to Worry About It
It’s time to address the mental component of chronic Lyme, with a piece of raw and real advice that can really get you through the plight. Bad days are likely inevitable when you have chronic Lyme disease. The more and longer they’re around, the more trying and challenging the condition becomes to a mind that constantly looks for a saving peace.
When you’re having a bad day, it’s okay, seriously! Don’t get caught up in the waste of it -- let it runs its course, let it be, and accept that there probably isn’t anything you can reasonably do in the time period before you have a good day again, to get rid of this bad day. Why? Because there’s always tomorrow.
Many would stop the cliche there, but for those with an existential nihilistic voice inside, and acknowledgement of the statement’s lack of consideration for human mortality, take it one step further and finish it by saying if tomorrow doesn’t come, there will be no chance to worry.
To be grim for the trade off an all-encouraging perspective on a life that has been infected with chronic Lyme disease, we can truly be hopeful that the changes we make today will bring a good tomorrow. If not, there’s always the next tomorrow, or a tomorrow that we’ll never have seen coming.
4. The Most Difficult and Complex of Situations or Problems Often Have the Simplest of Solutions
What makes enduring chronic Lyme disease so difficult and complex? Simply put, it’s not having the solution to make you feel 100% better. In fact, one could argue the reason anything seems difficult or hard to solve is because a solution is simply just not known.
But it’s really not having or knowing the solution that’s hard, but rather getting to it. For those with chronic Lyme disease, their situation eventually becomes complex and difficult the longer they’re not only without a way to make themselves feel better, but the longer it takes to find that way.
Eventually, if you put in the time and energy to learn what your body needs to feel better, you’ll discover the solution and wonder how you could have overlooked something so obvious. For example, maybe you feel worse after taking a shower. You spent years dealing with the symptoms post-shower, and the same amount of time trying to figure out why. Until one day, through a persistent curiosity and a problem-solving mentality, you learn that stagnant lymph fluid is the culprit.
Yes, you will likely have to put in the work to get yourself better from chronic Lyme disease. No one wants to, but sometimes in life you have to just do it for the greater good of you. Of course it would be nice if the government acknowledged the condition, your general practitioner could get you better in a single office visit, but for now, that’s just a fantasy. Instead, focus your limited energy and time (sorry, there’s that reality again) on the solution for you that you’ve just yet to be bitten by.
3. The Right Medicine, at the Right Dosage, at the Right Time, Is Key
In hopes of getting better, you’ll find that taking everything, at maximum dosage, and at all times isn’t the correct protocol. In fact, it may do the opposite and make you feel bad, and not for good reasons. We get it -- you’re ill and the one thing you can do is take stuff and a lot of it, but there must be a modulation.
Let’s say you just got off long term antibiotics and the probiotics you were taking to maintain good gut balance during the course were as effective as taking nothing at all. You’re not suffering from an excessive gut imbalance, and likely fungal overgrowth. So what do you do? You spend the time to find a high quality, high CFU probiotic, run out to the store or let Amazon run to you, open the bottle, pop 2 or 3 capsules above the recommended dosage, and the next day it appears as though your hands and feet have swapped locations -- you’re feeling as bad as you can.
What’s the problem here? The obvious problem, to us at least, is that too much, of the wrong dosage was taken at once. For other supplements, the outcome could have been more pernicious, possibly landing you in the E.R.
The way in which this situation should have been handled is with care and hopefully a physician. To get you better, from the damaging and destroyed effects of the long term antibiotics to your gut, you’ll need to find the right probiotic strain, at the right dosage, and administer it over the right period of time that which is gauged simply by how you feel.
You might also need to accompany it was some molybdenum for detoxification of fungal specific toxins, and modified citrus pectin for biotoxin illness. In fact, you might need to just do the modified citrus pectin first before you even start the probiotic because you’re so backed up with biotoxins that any die off from a probiotic will leave you no chance of feeling better any time soon.
Treating chronic Lyme disease must be done meticulously and with great finesse. Absolutely and always listen to how you respond to anything you take. Understand that a specific medicine or supplement is right for you, take the correct dosing for you for now, and determine the best time to take it in relation to other medicines or supplements to keep yourself from unnecessarily feeling bad.
2. What Gets One Person with Lyme Better, Can Make Another Person with Lyme Worse
It’s so important to understand that each individual who has Lyme is unique in their own health and with what is keeping them from getting better. As we mentioned, and as you know, information on getting better from chronic Lyme is ubiquitous and not in short supply, but what many of these valuable and invaluable resources fail to mention most of the time (yes, again, even Tired of Lyme, though we try) is that this specific treatment or advice might not be appropriate for getting you better.
Some people might need and could really benefit from using liposomal glutathione to assist in detoxification, but others who have a heavy metal burden or a sulfur sensitivity (liposomal glutathione is high in sulfur compounds) would likely not. In fact, taking the wrong medicine or supplement for you may not always be harmless, but could potentially really hurt and set you back.
Lyme itself is showing to be just one component of chronic Lyme disease as a condition. Dr. Richard Horowitz, M.D. made this case in renaming the condition M.S.I.D.S. (Multiple Systemic Infectious Disease Syndrome). Lab tests may show you have Lyme, but maybe it’s not really active and the symptoms you’re experiencing are from Babesia or a leaky breast implant, or both! Or another person may have just a very active Lyme infection, with no co-workers.
In a possible scenario, another person may not have Lyme, but lab tests were interpreted incorrectly and they were treated with long term antibiotics that made their initial symptoms caused by just an imbalanced microbiome worse, and now they’ve been diagnosed with Post-Lyme Disease syndrome, so they take a bunch of antimicrobials to kill off a suspected-to-still-exist Lyme infection, a bunch of sulfur supplements to detox, overburden their sulfur pathways due to an undiagnosed sulfur mutation or heavy metal burden, feel even worse and stay that way for years to come.
You have a unique blueprint for getting better. There’s nothing wrong with doing the research and taking in the information, but be absolutely sure it makes sense to apply what you’ve learned, to you.
1. Get the Basics Right Before Moving to the Advanced
It’s not uncommon to see a new Lyme treatment modality or clinic popping up every couple of months, promising the results you want to hear. But before you go and trade in your first born -- at this point it might be your second or third -- get the basics right and under control first!
Well, what are the basics? The basics are what you already know how to do, or should know how to do well, just by being alive. Sleep, diet (i.e., nutrition and caloric intake), stress, water, bowel movements, and in our opinion, one of the most critical of the critical, the gut.
It’s reasonable to conclude the reason many with chronic Lyme disease got sick -- and remain sick -- is not from a single overnight change, but rather an accumulation of imbalances and an improper treatment of the body that started long before illness came about. A breaking point in the body was reached and Lyme was allowed to Manifest Destiny it.
Dr. Ronald Stram, M.D., a former E.R. doctor who was tired of seeing people come into the hospital for preventable conditions, and current founder of the Stram Institute in New York, made it known in a Lyme presentation that he treats the gut first: ”And I will tell you, that typically, if people can tolerate it, almost everyone’s symptoms -- no matter what they are -- will get improved.”
Do what you need to do to get a good quality sleep; make the effort to consume a diet of whole, nutrient-dense foods that work for you; be sure that you’re taking in enough calories so your body can not only maintain 98.6 degree Fahrenheit when nothing else around it is, but so that it has the energy it needs to heal; drink plenty of water to flush; eat foods high in fiber -- like oat bran or beans, or both -- to get the bowels moving everyday; and restore your gut with good probiotics because more research is showing how critical it is for not just the immune system, but our overall health and how we feel.
Seriously, the good bacteria in our gut control neurotransmitter production, can turn on and off our genes, and just kick the butt of the bad bacteria and other imbalanced pathogens.
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