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Believe Me: My Battle With The Invisible
Disability of Lyme Disease
By Yolanda Hadid (Foster)
Disability of Lyme Disease
By Yolanda Hadid (Foster)
Why Does It Take So Long To
Get Over Chronic Lyme?
Willful ignorance keeps many unnecessarily sick for too long
If you have chronic Lyme disease, you know very well of the frustration that continuously exists due to the condition’s duration -- so do your friends, family, and those many medical professionals you may have entrusted your health with along the way. But why? Why couldn’t it be that during the preliminary manifestation of your symptoms, a simple office visit to just the family doctor couldn’t contain everything you needed to completely recover from a highly recoverable condition?
While there are many common and individual reasons for why it takes so long to recover from chronic Lyme disease, it usually starts with a sole, willful ignorance, with events that follow that don’t help to overcome the condition, but rather continuously stall and delay its treatment. Until one day, you wake and realize that 10 years have passed, you’re still battling Lyme -- but maybe progressing -- and the massive failure of the professional medical system remains unchanged.
#1. Lack of Knowledge in the Medical Community
If you’re not feeling well to the point where it’s deemed necessary for a professional medical opinion, where is the one place you go? Your general practitioner or family doctor, correct! You’ll schedule an appointment with them, they’ll see you, give you the professional medical advice you’ve yearned for -- with probably a prescription or two -- and then you’re sent home to recuperate or referred to a specialist.
But what happens if you don’t feel well because you have chronic Lyme, but you’ve never heard of it, nor has your family doctor? You’ll schedule an appointment to see them, you’ll receive their professional medical opinion -- which, if you’re lucky, may just be Lyme (not chronic Lyme) -- you’ll be given 3 weeks of doxycycline, and you’ll be better in no time, right? Wrong.
Because your family doctor doesn’t acknowledge chronic Lyme disease, nor have they ever even heard of it, your symptoms will likely remain long after the 3 weeks of doxycycline is up. So what happens next? You’ll go back to your family doctor, they’ll insist your Lyme is gone, and you’ll likely be referred to a specialist of some kind.
Once you leave your family doctor’s office for the second time, the clock continues to tick on your health as your condition will likely begin to get worse over time. The only hope now of receiving a proper, suggestive diagnosis of chronic Lyme for your symptoms is through the referring physician -- who may acknowledge chronic Lyme -- a family or friend who has chronic Lyme, or knows someone who does, or the internet. If neither of these 3 outlets come through, then you can remain untreated for chronic Lyme, as symptoms deteriorate, indefinitely.
#2. Lack of and Elusive Lyme-Literate Physicians
Not only is there a lack of knowledge and deliberate disacknowledgment of chronic Lyme in the medical community, but the physicians people with chronic Lyme need (i.e., Lyme-literate physicians) are not only far and few, but are incredibly difficult to find. Why are these highly valuable and desperately needed physicians so difficult to find? Because they risk losing their license for treating a disease that doesn’t exist. You can see the problem here.
So let’s just say you were lucky enough to hear from a friend that your persistent and debilitating symptoms could be due to chronic Lyme. Great, now all you need to do is find a Lyme-literate physician and you’ll be all better -- except, does anyone know of a Lyme-literate physician in this area? Nope. Well, you can just look on the internet, right? Kind of. You won’t find a database dedicated for finding physicians to treat an illness that doesn’t exist. You’ll need to know of ILADS’ physician referral system or be a part of a Lyme forum that provides this top secret information.
And even if you happen to follow this route to your favor, physicians who call themselves “Lyme-literate” may just be using the title as a marketing ploy. Just like family practitioners, Lyme-literate physicians can be really good and be just what you need, or they can be horrible -- not a true Lyme-literate physician -- and further keep you from getting better. If only you knew to seek out an ILADS trained physician, but even still, as with any business, it doesn’t matter what certifications a business person has, they’re still human and there’s no guarantees of getting the service you’ve paid for. Oh right, speaking of paying for professional medical services for getting over Lyme...
"...and that one day, when you’re not feeling well because you have chronic Lyme disease
-- but don’t yet know it -- your family doctor will know exactly what to do."
#3. Cost of Lyme-Literate Physician and Treatment
Let’s say you’re lucky enough to not only find a good Lyme-literate physician, the cost of not only using their treatment plan, but the cost of just talking to the doctor can be very costly. Oh, but insurance will pay for it, right? There isn’t a chance in… Well, you can see if your insurance will at least pay for the treatment, right? Go right ahead, but as mentioned before, insurance won’t pay for a disease that doesn’t exist. Is it starting to become clearer?
You’ve bitten the bullet because you’re desperate to fix your health and ameliorate your debilitating symptoms -- you’ve paid for your Lyme-literate physician and the treatment protocol you’ve been prescribed for your chronic Lyme out of pocket. No worries, you can just declare these medical bills and prescription costs on your taxes, right? Yes, actually yes you can -- to some extent. Many Lyme-literate physicians are integrative, which means they treatment not only with conventional medicine, but holistic and natural medicine as well -- you know, witchcraft. Well, at least that’s how your tax form will view any non-conventional medicine your treating physician has prescribed you. But at least you can claim your office visits and half of your treatment protocol.
#4. Chronic Lyme Isn’t Just Lyme (or chronic Lyme)
If you haven’t guessed by now, chronic Lyme disease isn’t just a condition caused by a puny, weak, and unevolved single celled organism. It’s actually a condition that involves more than just the highly evolved and intelligent Lyme bacteria, such as coinfections, heavy metals, mold toxicity, gene mutations, biofilms, diet, sleep, KPU, which is why Dr. Richard Horowitz, MD (co-founder of ILADS) developed the term MSIDS. MSIDS is an acronym for Multiple Systemic Infectious Disease Syndrome and is simply chronic Lyme disease’s new name. It really sheds light on a condition, that many continue to experience, that isn’t caused by just Lyme.
You no longer have chronic Lyme -- you have MSIDS, or Lyme-MSIDS (so we don’t forget we still have Lyme). You’ve found the right Lyme-literate physicians, he’s run all right tests -- yeah, that insurance thing again -- and you’ll begin your treatment protocol in a few days. Things are looking good because you’re going to feel better in no time, right? Uh, yeah, about that -- you might want to sit down for this one.
This is great -- you’ve done all your homework, you’re seeing the right doctor, and you’ve got the right treatment plan, hopefully, but the doctor says it’s going to take a year or more to get better from chronic Lyme (i.e., Lyme-MSIDS). What?! Why so long? Because it wouldn’t be chronic Lyme if you could get over the condition in a week!
There are many, many reasons why treatment for chronic Lyme disease takes so long, and in a nutshell, a lot of it has to do with the many associated conditions -- other than the Lyme bacteria itself -- that are keeping you sick. You’ll likely start with a course of antibiotics or antimicrobials, and because Lyme and its coinfections aren’t dumb, you’ll need to treat the different forms they exist and hide in, but you may only be able to tolerate treatment for just the Lyme spirochetal form at the moment because you’ve just experienced your first herxheimer reaction.
Your treatment’s timeline is now dictated by how often and intense your body’s reaction is to killing the pathogen, and for some, this process can take months, if not more. All the while throughout this, you may be treated for a biotoxin illness, which can make you feel bad, a gene mutation or two, which can make you feel bad, heavy metals, which can make you feel bad, KPU, which can, you guessed it - make you feel bad.
Recovering from chronic Lyme is a slow process -- a marathon, if you will -- because all the time you’ve spent to reach this point of treatment, has allowed the pathogen(s) inside to grow stronger and further deteriorate your condition. It can definitely make you feel many emotions - frustration, anger, hopeless, anxious, and so many more.
For some, reaching this point of treatment never comes as they’re usually misdiagnosed with some other condition, and they’ll be treated for that nonexistent condition so long as they’re not treated for another nonexistent condition, chronic Lyme disease. For others who are lucky, finally being treated appropriately for chronic Lyme disease usually take years, and even scarier, decades.
But there are many other reasons for why a person who has chronic Lyme will take so long to get over the condition. The truth is that it should have never taken years to finally receive the right diagnosis and treatment - that’s embarrassing, especially when the knowledge and evidence exists for treating chronic Lyme. It will take much more money, time, energy, patience, and dedication to change how the world’s health institutions and organizations view chronic Lyme, and that one day, when you’re not feeling well because you have chronic Lyme disease -- but don’t yet know it -- your family doctor will know exactly what to do.