5 Reasons Why a Person with Chronic Lyme Won't See, or Will Delay Seeing, a Lyme-literate Doctor
With solutions for Getting You the Help You Need and a Special Acknowledgment to Lyme Physicians
If you have chronic Lyme disease, or suspect you do, you’re likely searching for a doctor, physician, or healer, to simply put it, make you feel better. And you’re not just looking for any ol’ doctor to treat your chronic Lyme disease, and you shouldn’t be! By having, or suspecting to have, chronic Lyme disease, in your efforts to heal yourself, or a friend or family member, you likely now know that your family doctor won’t be the person to provide that solution. In come Lyme literate doctors, physicians, and healers.
These Lyme literate doctors, or Lyme specialists, really are a special breed of healers. Chronic Lyme disease can be very complex because of the myriad of factors that must be addressed in order to properly heal from this illness. Only certain doctors know this, and they’re usually called Lyme literate doctors, Lyme specialists, or LLMDs or LLNDs, but don’t let a physician’s title be the sole deciding factor in your seeing them. Title is not always a reflection of empirical merit or credentials, and sometimes even on-paper credentials. More about this will be discussed later.
There is a physician, doctor, or healer that exists who knows exactly how to get you better from chronic Lyme disease. The problem is the resources or means by which you are able to see this physician, which complicate and further delay your healing from chronic Lyme disease. Below are some of the most common reasons why people who have chronic Lyme disease don’t see, or will delay seeing, a Lyme literate doctor, with solutions to these problems. Of course, all the information below is under the assumption the person potentially suffering from chronic Lyme disease suspects what they are potentially suffering from.
Reason 1: Lyme Physicians Have a Long Wait List
The irony of being physically and mentally ill from chronic Lyme disease, coupled with the need for near-immediate medical attention from a doctor or healer who knows exactly how to treat chronic Lyme disease, is the time it takes to see them can be weeks or months. By the by, if there is a 4 month wait period to see a Lyme physician, the odds are good that physician is the one you’ll likely want to see. He isn’t booked because he’s giving free massages.
It’s a very difficult situation to be in when you’re physically and mentally ailing, and the appointment to see the doctor who will likely be able to help you is months away. It’s February, but your appointment is in June. In reality, 4 months is enough time for a person with chronic Lyme disease to become that much more sick, especially when it takes just less than 12 hours for the Lyme bacteria to infiltrate the brain after transmission from a tick bite.
If you can’t wait months to see your Lyme physician in June, consider calling around and looking for a Lyme physician that can see you much sooner. But if you absolutely want to the see the Lyme physician you originally set an appointment with, call back once or twice a week to see if any appointments have opened up because of another patient’s cancellation. The truth is people cancel appointments all the time with Lyme physicians. Usually the long wait period allows them time to ponder over the distance they will have to travel, the amount of money they’ll have to spend, and even if the doctor they’ve scheduled an appointment with is even the right one. Unfortunately, sometimes people’s minds get the best of them and they end up canceling an appointment when they probably shouldn’t have. But this does happen, and it could allow you to see your Lyme physician much sooner if you call the office every so often to check for cancellations.
If you’re gravely concerned about your health deteriorating even more, and it likely will, during the time period between now and when you see your Lyme physician, you may want to consider self-treatment. And self-treating for Lyme isn’t entirely going at it alone because the at-home treatment protocols for Lyme disease, such as the Cowden Protocol by Dr. Lee Cowden, MD and the Buhner protocol by Stephen Buhner, have official instructions and tons of information on forums written by people who use these protocols. What’s even more intriguing and ironic is by the time your appointment roles around in June, you may find that you no longer need to see the Lyme physician, or you’ve completed much of your healing before you even see the physician because of your self-treating protocol for Lyme. [Note: Do not start any treatment protocol without the professional medical advice of a doctor or physician. This information is not a substitute for professional medical advice.]
Reason 2: The Lyme Physician is Too Far Away
This is great news! You found the right Lyme doctor to treat your chronic Lyme disease. He has an excellent track record, he is ILADS certified, and he’s in your price range -- but one thing is preventing you from scheduling an appointment - he’s 3,200 miles away.
It is so common for people with chronic Lyme disease to travel great distances to receive the help they need to get better. The irony is many with chronic Lyme can’t travel too far, or even get out of bed for that matter because of their deteriorated, weakened physical and mental state.
While the process of finding that perfect Lyme physician was difficult, the reality of that physician's distance from your is even more. The great and compassionate service many Lyme physicians provide is consultations over the phone and Skype such as Dr. Marty Ross, MD of treatlyme.net. These physicians know many Lyme patients are too weak to travel, but still need their vital help. If you find a Lyme doctor you really like and want to see, ask if they’d consider a phone or Skype consultation. If they don’t, you can either brave the trip, which you may actually be strong enough to endure -- it’s just your mind that has convinced you otherwise -- or you’ll have to find a Lyme physician that is much closer.
Reason 3: The Lyme Doctor is Too Expensive
It’s true, physicians that treat chronic Lyme disease can be very pricy, but so will be any doctor in which their services are not covered by insurance -- and that’s the problem - they’re expensive because you’re paying for their services out-of-pocket. Actually no, that’s not the problem. The problem is Lyme physicians, who know how to treat chronic Lyme disease, are treating a disease that has not been acknowledged by the medical community. And if the medical community doesn’t acknowledge chronic Lyme disease, why would insurance companies?
These physicians who are treating patients with chronic Lyme disease, who likely deserve every penny for their literal life-saving services, can not accept insurance simply because insurance companies won’t accept them - or at least the treating chronic Lyme disease component of their practice.
While a good Lyme physician may charge upwards of $600 or more for an initial consult, healing from chronic Lyme disease does not have to be that expensive. There are physicians and healers of chronic Lyme disease who charge much less and can even be better at their job than those that charge more. In conclusion, the price of a Lyme physician is not always commensurate with their ability to treat chronic Lyme disease. If you find a Lyme physician you like, consider their track record and ask around. If you don’t agree with the price, you can always find someone cheaper, but of course the decision to do so may depend entirely on the eagerness to get your health back and the tolerance level of your physical and mental state.
Reason 4: The Prefix “L.L.” Before "M.D." or "N.D." doesn’t instill confidence
Here is the reality of physicians that put “Lyme literate” in front of their official, degree backed, type of doctorate achieved acronym - it means nothing. In fact, it’s not even an official medical granted prefix, but rather a street term, if you will, to suggest they as a treating physician may know a little more about treating chronic Lyme disease than your everyday family doctor. But, as those with chronic Lyme know, just because something isn't officially used or condoned by the medical community, doesn't mean it should be discounted as credible.
So what does this mean? Simply put, it means there are physicians with the prefix “LL” in front of their doctorate acronym who don’t know really anything about treating chronic Lyme disease. It also means there are doctors or physicians that intentionally don’t put “LL” in front of their doctorate acronym, and are some of the best physicians for treating chronic Lyme disease. On a side note, some omit the “LL” for protection from having their license revoked, because as you know, treating an illness that “doesn’t exist” (i.e., chronic Lyme disease) doesn’t look good in the eyes of the insurance company and the government.
While the term “Lyme literate” is best used to describe the type of doctor people with chronic Lyme disease need to see, the term alone should not be used or translated as a doctor’s merit or credentials for treating chronic Lyme disease. When looking for a doctor who knows how to treat chronic Lyme disease, look for credentials such as: ILADS certified, check their track record on forums and with people who have seen the physician, look for articles, books, or any information written by the physician on treating chronic Lyme disease. They don't need all of these qualifications to be the physician you need to see, but having one or more should warrant a second look.
Reason 5: Lyme Doctors Are Hard to Find
If you need a doctor, physician, or healer to treat your chronic Lyme disease, you can’t call up your insurance company and ask if there are any nearby or in your network. You can’t ask your family practitioner for a referral to a Lyme specialist because some family practitioners have never even heard of such a physician. This is the problem -- because chronic Lyme disease doesn’t exist (i.e., acknowledged as existing) in the eyes of the medical organizations that oversee public health, finding a doctor to treat chronic Lyme disease, especially a good one, is a challenging task.
You can’t just blame the disacknowledgement of chronic Lyme disease by the medical community for the arduous process of finding a lyme physician, but also the repercussions of this disacknowledgement - possible revocation of a physician's license for treating an illness that doesn’t exist in the eyes of the medical community. This is why many of the great physicians who know how to treat chronic Lyme disease the right way are off the radar.
Of course, there has to be that fine balance of a Lyme physician protecting his license and practice, and being able to locate them for treatment. If the scale tipped more in any one direction, the process in finding a physician who knows how to treat Lyme would be nearly impossible. This is where the great Lyme organizations (i.e., those organizations that acknowledge the existence of chronic Lyme disease) come in for physician referrals such as ILADS, CanLyme, and the Lyme Research Alliance to name a few, as well as the great, everyday people who run the physician referral section of Lyme support forums (e.g., MDJunction, LymeNet, etc.)
The reality is you're likely dealing with something that is far more complex than you can imagine, and in order to heal, you need a special physician, doctor, or healer who knows the complete ins and outs of treating chronic Lyme disease. Yes, there are people who have healed themselves from chronic Lyme disease on their own, but the complexity of chronic Lyme disease is the factors that contribute and keep one person sick and chronically ill are not the same factors that keep another person chronically sick and ill. A Lyme doctor is the right person to figure out the unique complexities that are keeping you specifically, sick.
Lyme doctors, physicians, and healers are the real game changers. These men and women think outside the box and know their original medical school training would never be enough to heal a person of chronic Lyme disease. Lyme physicians are a different breed of healers, and it's not even how they're doing the healing that makes them so, but their impressive and so desperately needed ability to reason and change their protocol when new evidence is presented. It is their unique and admirable ability as healers, and what makes them healers, to be open-minded, listen and learn from their patients, accept the newest research available on chronic Lyme disease, and even risk their license and practice for the sake of providing, at a minimum, a single person, relief from the suffering they have endured from chronic Lyme disease. Their ability to restore life is solely based on their unique knowledge which could not have come about if their inherent ability to question the prevailing medical standards didn't exist.
This one is for the Lyme doctors, physicians, and healers - thank you!
- "Dr. Sponaugle Teaches the Brain Chemistry of Lyme Disease." YouTube. N.p., 2 Sept. 2013. Web. 28 Apr. 2015. <https://www.youtube.com/watch?v=A_01-g55fwg>.
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