If you are suspecting Lyme Disease, or just received a diagnosis…here is what I suggest.
I must say again, I am not a doctor, I am a ‘professional patient’ as I say, and have done more research on Lyme Disease in the past 11 months, than MOST doctors have researched throughout medical school. Sadly, that is factual….not my ego, I assure you that’s well in check. It is common for doctors to receive less than one month of training, regarding Lyme disease. Considering there are over 300 strains of Lyme, or technically..Borreliosis, and several nasty, but common co-infections, plus multiple related viruses…a symptom list as long as your arm, and it is misdiagnosed as MS, ALS, Alzheimer’s, Parkinson’s, Lupus, Chronic Fatigue Syndrome, Fibromyalgia, etc., more than 60% of the time. I’m going to go out on a limb, and ask you to listen more to what I am saying, than your own primary doctor (unless he/she is a Lyme Literate doctor), more than what the CDC is recommending (listen to them, you’ll likely end up disabled, or possibly dead), more than the IDSA (in bed with the CDC) and most Infectious Disease doctors (a rare few will think for themselves and surprise you), or, well pretty much anyone other than an LLMD, some excellent groups on social media who truly care and are knowledgable (The MayDay Project, FLDA.org, to name a couple), Chronic Lyme patients who are living it, and most importantly, ILADS.org.
SO, what do you do if you were diagnosed? First, it depends on how you were diagnosed, and by whom. I’ll try to simplify this a bit. I’m basically incapable of keeping things short 😉 Bare with me…
If you were diagnosed by a primary care physician, or another doctor who tested you with an ELISA test, and you are positive for Lyme, your next step is to request testing for co-infections. You were likely prescribed Doxycycline, which I have thoughts to share on. Some people have done well with Doxy, if the infection was caught very early. If they have a healthy immune system, and it is caught before the 4th-6th week of a bite, it may go dormant. A great number end up relapsing shortly after finishing their script. I believe the reason this happens is because Doxycycline is a bacteriostatic tetracycline, which means it is able to slow the bacteria but not kill it. Now, if you are scratching your head, wondering why that would be the primary medication prescribed to Lyme patients, you’ll quickly realize it’s as idiotic as the group that set the guidelines for testing and treatment, adopted by our CDC. That should help explain why it is truly an epidemic, why thousands protest the IDSA & CDC every year, why there are decades worth of petitions, unanswered requests for changes to the board, and millions suffering and dying from Lyme and it’s co-infections. Anyway…back on track. If you had a Western Blot, or were tested for co-infections, if you know which bands you were positive for, and other infections, then you should be on combination therapy from the start. I will have a treatment guideline (by Dr. Spreen, in the book ‘Compendium of Tick-Borne Diseases’, which I refer to as the ‘Lyme Bible’) posted for you to look over. Now, if you have your diagnoses, but didn’t have testing for co-infections, if your doctor put you on Doxy, and won’t prescribe beyond 30-60 days (the ridiculous ‘norm’), your doctor isn’t advising you how to detox, how the importance of diet and gut healing is important, the need for immune and adrenal support is necessary, isn’t addressing neurological or psychological changes/symptoms, etc.. It’s time to move on to finding the right kind of doctor, testing and treatment! If you choose to stop reading…..I’m sure you’ll be back when your Doxy runs out, and you suddenly can’t sleep, your vision is blurry and you can barely make it to work. 😉 Until we meet again….I wish you well 🙂 (I’m being snarky so you keep reading….your life may depend on it. So, whether you find me humorous, annoying or offensive….doesn’t matter if I can keep you from suffering. I even care about those that don’t particularly care for my sparkling personality. 😉
Now…..time to discuss the ones that risk their medical licenses, years of schooling, their practices and their livelihoods, simply because they give a damn. I am referring to our committed LLMD’s, or Lyme Literate MD’s.. You can find great doctors near you on the ILADS.org site. ILADS (International Lyme and Associated Diseases Society) also give good, and accurate advice, and loads of reliable information. A good amount of Integrative Medicine doctors, and Naturopaths treat (Chronic) Lyme. The reason these doctors are necessary, goes far beyond the most important reason…which is, they don’t adhere to the CDC guidelines. This means that you can receive long-term antibiotic treatment, in late stage, severe cases you may have access to having a picc line placed (I’ve had mine for 8 months now..starting to live again, after 3 years!), and depending on the practice, you’ll have access to IV vitamins, chelation, multiple alternative treatments, such as IV Ozone (which I credit for saving my life!), biofeedback, etc.. Anyway, now that you know that an LLMD is the kind of doctor that you need to actually make you well, you should know that most don’t work with insurance (so many politics around Lyme, this is yet another)…insurance is also in bed with the CDC, and why would they dare work with the doctors that can actually make us well?? That’s lunacy!! There is no money to be made in healthy people, silly 😉 So, is this infuriating, and disheartening? Yes. Even for those who can afford it, why should we have to pay out of pocket, for all treatment beyond 30-60 days?? Really….WHY??! This is the ONLY disease on the planet with a time limit for treatment. Think about that for a minute…….
Now, I’ve talked about doctors, and the first steps after getting a diagnosis. You will find more info on testing, treatment, options, and so much more throughout the site. So, before I lose you, if i haven’t already bored you stupid….thank you for reading, hopefully learning even a smidge….and you can continue to what you need to know next.
To get through the hardest journey, we need only take one step at a time, but we must keep on stepping.