As I
stated in my prior posting, Chronic Lyme Disease (CLD) is a controversial, yet not
uncommon, diagnosis. Generally, CLD
refers to persons with symptoms lasting more than 6 months after a diagnosis of
Lyme disease. In reality, CLD has
different definitions to different people.
For some, there must be a confirmed original diagnosis of primary Lyme
disease while others assume CLD can arise without a prior tick bite, rash, or
confirmatory testing. Confused? Me too.
Lyme disease has even engendered conspiracy theories. Some have concluded that Lyme disease is a
genetically-modified hybrid of syphilis that our government has
weaponized.
Since
doctors and alternative practitioners can’t agree on the definition of CLD, you
can bet their approach to treatment will vary widely . . . and so it has. Those of us who toe the party line of the
CDC and the Infectious Disease Society of America disavow the diagnosis
altogether. CLD probably doesn’t exist,
and even if it does, we haven’t found an effective treatment. On the other hand, my colleagues in the
Northeast, in the hotbed of Lyme, have often taken a different tack. They are inundated with patients who have been
bitten by ticks, have tested positive for Lyme, and still complain of joint
pain, brain fog, and other assorted maladies despite having received the CDC
recommended 14-28 days of antibiotics.
What to do with these patients?
Some stick to their guns and refuse treatment. Others start to experiment. Perhaps 14 days of antibiotics is not
enough. Maybe a different antibiotic
will work better. The result is numerous regimens of long-term intravenous and
oral antibiotics based on flimsy science.
What does one do when the patient demands treatment, but nothing is
proven to work? Often, trial and error
rules the day.
I
personally have seen patients diagnosed with CLD, despite never having a
confirmed tick bite or having met the CDC definition for primary Lyme disease. These patients have been placed on year-long
courses of intravenous antibiotics, anti-fungals, and anti-tuberculous
medications. Often, the patients must
then resort to anti-nausea agents to help them tolerate the complex medical
regimen they are taking. It is
frightening. It is safe to say many
patients feel western medicine has failed them . . . so where do they turn? How about alternative medicine?
Naturopaths,
herbalists, and homeopaths have stepped up their game to help the suffering CLD
patients. Special diets boost your
immune system to help you combat the infection. Diets tailored to boost one’s blood alkalinity
have been proposed. Astragalus drives
the pathogens out of the lymph nodes making it easier for the immune system to
attack; B-vitamins help damaged nerves heal; colloidal silver electrically zaps
the bugs; and, of course, chlorophyll improves our oxygen absorption along with
providing a safe amount of copper to make the body more toxic to
pathogens. This is only the
beginning. There are hundreds of herbal
and homeopathic remedies to try.
The
problem is that as crazy as all these remedies sound, I can’t do any
better. I suspect there is some
underlying problem in persons diagnosed with CLD. Perhaps for some, their symptoms are truly related
to prior Lyme infection while others are suffering for an entirely different
disease. Until we know for sure, CLD
will continue to constitute the Wild West of Medicine. It is the Donald Trump of medicine . . . in
the absence of proof; I can say and do anything I want.
As the president of Florida Lyme Disease Association, I invite you to invest more time learning about the science behind chronic Lyme Disease. There are actually now over 700 scientific articles/studies showing persistent infection after antibiotic treatment. http://www.ilads.org/ilads_news/2015/list-of-700-articles-citing-chronic-infection-associated-with-tick-borne-disease-compiled-by-dr-robert-bransfield/
ReplyDeleteThere have been powerful studies from Johns Hopkins and Northwestern University, among many credible sources, showing they cannot even kill the bacteria in vitro, let alone in vivo when patients often have co-infections and other complicating factors. There is not a single study showing a patient with Lyme IS cured with the standard recommended IDSA treatment. The IDSA guidelines were also recently pulled from the national clearinghouse because they do not meet current standards.
The IDSA one size fits all approach, which ignores duration of infection, response to treatment, immune health of the patient, existence of co-infections amongst many other variables, is failing the majority of patients. Indeed a recent Johns Hopkins study showed that over 63% of patients treated for Lyme continue to suffer residual symptoms that can be debilitating.
As for testing, please note that the CDC criteria was developed to detect a single strain in the NE, when there are over 40 that infect humans. Peer reviewed studies show that the tests miss 1/2 of actual cases. The CDC even concedes that its surveillance criteria misses 9 out of 10 actual cases. Meanwhile, less than half of those infected with Lyme recall a tick bite or rash. We absolutely need more reliable tests, but Lyme remains a clinical diagnosis (as recognized by the CDC).
Do we need more research? Absolutely. Unfortunately, due to the dogma that Lyme is hard to catch and easy to treat, funding has been denied and narrowly focused. Until the research catches up with the crisis, patients need compassionate care. I recommend the referenced book by Dr. Richard Horowitz "Why Can't I Get Better" for symptom lists, a comprehensive discussion of treatment options, and consideration of secondary issues that often impact Lyme Disease patients. I am available to provide resources if you are willing to learn.
Melissa- I appreciate your comments. I am not sure that I agree on all points, but certainly Chronic Lyme is a controversial topic that merits further research. I am sure you will egree that the treatment options for Chronic Lyme are quite varied and poorly standardized. Whether it is Chronic Lyme, Fibromyalgia, or lower back pain when western medicine has failed others are sure to fill the gap.
ReplyDeleteThank you for the reply Scott. Chronic fatigue and fibromyalgia (along with Parkinson's, ALS and Alzheimer's) are all label diagnosis that may have an overlooked infectious etiology. ILADS has published evidence based treatment guidelines that are the only Lyme guidelines that meet current standards. Whether the condition is Lyme or cancer, there will always be a variety of treatment modalities that patients try. Dr. Neil Spector, a highly respected oncologist and researcher at Duke University has made the argument that Lyme is actually the infectious disease version of cancer. Chronic Lyme is only controversial because the IDSA and CDC have taken a dismissive stance that Lyme is hard to catch and easy to treat, leading to virtually no research funding in ineffective treatments. I have researched extensively for the past 4 years and would be happy to provide the latest credible studies that are in direct conflict with IDSA guidelines. Please let me know if you would like to connect (we are both friends with the Schackow family). There is far more Lyme in NC than recognized.
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