To Your Continued Health

I promised myself that this blog would be totally apolitical, and contain only breezy, newsy articles about our mountain life, and a few of the projects that I start and actually finish!  ;>)  But that was before I was diagnosed with Lyme disease.  And believe it or not, there is nothing quite as politically charged as Lyme disease in the medical world.

Bear with me on this subject, please.  It is almost summer. You and your loved ones will be spending lots of time outdoors, and the ticks can’t wait to meet you! Ticks are everywhere, and you can get Lyme disease in Charlotte, NC or Ellijay, GA as easily as you can in Lyme, CT!  Ticks never hibernate, but since most of us spend more time indoors during the cold months, and when we do emerge, we are bundled up, so we are hard to bite. Bring on the warm days and sunshine, and you are at severe risk.

To quote from the founder of the state of Kentucky’s Lyme Disease Association (almost every state has their own Lyme site; that alone should be a clue about how widespread the danger is!), here a few facts about ticks and prevention:

  • Deet is ineffective against ticks. Using a permethrin-based insect repellent is the best way to stay tick-free. (Use a light product on skin, and a heavier one on clothing.)
  • Wear tucked-in clothing and hats if in a wooded or high-grass area.
  • Ticks can sense your BREATH and come toward you!
  • If you sleep with your outdoor pets, you will have ticks on you. Our dog Pip is a regular “tick taxi”. The meds he takes prevent him from being bitten, but the bugs don’t ever turn down a free ride! :>{

Chronic Lyme is a beast that invades every nook and cranny of your body.  It affects your brain, heart, neurological system, sight, hearing, speech….you name it, and it robs you of your ability to do the simplest tasks. Your brain does not comprehend what it used to instantly understand, and the ability to multitask or even stay on task is gone.  In my case, I can barely walk, and when I do, my legs feel like jello. I have chronic pain that travels around my joints and musculature, and I can no longer write a thing that anyone, including myself, can decipher.  Add to that the clumsiness, and the falls that result in being so “out of balance”.

Lyme is caused by spirochetes, that burrow into organs; they have an amazing ability to “hide”, making it difficult for antibiotics to locate and destroy. Also, they can go dormant for months at a time, giving false hope to the infected, only to spring back with more vengeance than ever.  To add insult to injury, many Lyme patients are also the recipients of a growing list of co-infections that ticks also carry.  Each of these co-infections produces a veritable smorgasbord of symptoms and added misery.

Lyme disease, if caught early, can easily be cured with antibiotics. If you have a bulls-eye rash, that is a sure sign that you have been bitten, and are infected (although not everyone bitten develops a rash!).  You need to visit your doctor ASAP.  Don’t be surprised if you have to tell the doctor what the rash means.  Most will not recognize the most obvious symptoms, so bring a picture of a bull’s eye rash with you.  Stick to your gus; demand the meds.

The three major problems prohibiting the early detection of Lyme are:

  • Its symptoms mimic so many other diseases, such as Multiple Scleropsis, Parkinsons, Lupus, Fibromyalgia, etc. You have no idea how many people are mis-diagnosed, leading to chronic misery! I personally saw my primary care physician, 2 orthopedic specialists, 3 neurologists (one of whom was a teaching doctor at Emory, and he told me that, beyond a doubt, I had Parkinsons disease, altogether dismissing the unexplained white lesions on my brain scan!), and an infectious disease specialist, who upon meeting me, said “I don’t think you have Lyme disease”! (what a pompous jerk!)
  • The testing for Lyme is SO inaccurate! There are so many people who truly are infected, whose tests come back negative. Using Quest Labs or LabCorp standard testing procedures is a waste of time, IMHO. For an accurate assessment of your results, send your bloodwork to a qualified lab such as IGenex, (& even they sometimes return false negatives). New, more accurate tests, such as I Spot Lyme are showing great promise, but they are quite expensive, and if you choose that route, expect to pay upwards of $700 out of pocket. (Please note that as we speak, the CDC is trying to disqualify the competent labs, such as IGenex, from performing the testing, in favor of the run-of-the-mill Quest type labs. The reasoning behind this is that such a move will “level the playing field” for generic labs (i.e., Quest) to compete with the specialized labs, in order to play in the Lyme disease diagnosis arena.
  • Probably the most insidious problem with the diagnosing and treatment of Lyme is the CDC’s set of guidelines regarding Lyme disease: 1. How many new cases are reported each year (not even close to being accurate!); 2. The US map that shows that the the majority of tick bites occur in the Northeast corridor (in your dreams! They are everywhere!); 3. And the treatment guidelines for chronic patients, which are four weeks of antibiotics and BANG! You are cured!

These guidelines, drawn up by the Infectious Disease Specialists Association (IDSA), have been accepted by the CDC, and as a result, by most doctors, and insurance companies.  So when 4 weeks are up (and oh, by the way, that timeframe precludes searching for the correct combination of meds, based on an individual’s needs), your requests for reimbursement for medical treatment, medication, bloodwork, etc. are rejected.   No wonder people are going bankrupt trying to get well!

But the story really gets much murkier and more insidious.  There are doctors (too few and far between) that are very well-versed on Lyme, and its treatment protocol.   We refer to them as LLMDs (Lyme Literate Medical Doctors).  Most official Lyme blog sites will not allow you to publish your LLMD’s name, if someone asks for a recommendation. That correspondence must occur via private email.  Why?  Good question.   The reason is that many LLMDs are being sued, by the government, for misdiagnosing and mistreating  patients! Below is an appeal, published last month, by a doctor that is facing serious legal problems. Read it and draw your own conclusions:

” I have been writing this BLOG since 2008. It has been widely read with over 1.2 million page views. I hope it has been helpful. I have intentionally tried to keep this BLOG non-political. But alas, Lyme is a political disease and this is an inescapable fact.

I am in trouble now and asking for help. I have been investigated by the medical Board 3 times since 2008. The first two investigations were dropped. I am no longer under investigation; I have been charged by the Medical Board of Maryland with serious violations. The last investigation was initiated by a complaint from a major insurance company with which I previously participated with, 3 years ago.

A number of patient charts were reviewed and sent to “peer review.” My reviewers were IDSA infectious disease doctors. One of the reviewers is a well known Johns Hopkins faculty member — well known to be on a mission to stamp out doctors such as myself.

I am charged with violating the standard of care for each of 6 patient charts evaluated. In the charges ILADS’ views are entirely nullified; the standard of care is solely based on IDSA guidelines. The charges against me are serious.  I face prosecution by the Attorney General’s office of the State of Maryland at the behest of the Medical Board. The Board has informed me that the charges are public; the details are available for anyone to read. The penalties may be wide ranging and may include suspension of my license to practice medicine.

I am asking that current patients and former patients of mine to write me a letter of support describing their experiences with the medical system and their experiences with care I provided for them.  For now only send these letters to me, by email or snail mail. Thank you for your support.”  –Daniel Jaller, M.D. 15245 Shady Grove Road Suite 315 Rockville, MD  20850

This blog entry was written to enlighten and warn my readers about ticks and the diseases they carry.  Be vigilant and take preventive measures. If you get a bite, now you know what to do!  Be well, and have a safe & wonderful summer.


About vkroo

I am passionate about writing, as well as design/DIY/decorating. I decided to combine these skills in a blog, that describes the joys and challenges of transforming a shaggy, baggy elephant of a mountian house into a stunning home.
This entry was posted in lyme disease, lyme disease prevention, the politics of lyme disease. Bookmark the permalink.

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