Lyme Disease and Co-Infection—Silent destroyers
last updated December 2019
The relationship between PM, cranial neuralgias and tick-borne infection, including Lyme Disease, involves connecting the dots. I have been told that most doctors have been trained to look for one underlying cause when multiple symptoms are present. The full extent of the relationship is unclear as research on tick-borne pathogens is ongoing. However, it has been proven that tick-borne infection can effect the nerves and the central nervous system. It is unclear if these infections can cause calcification, tremor disorders, or other growths in the sinuses or the brain. There is proof that it can cause changes in the appearance of the brain that imitate other diseases and that it can impact mental health. For current research, please consult the Lyme Disease Association.
Lyme disease is already well documented on the internet (see some of the links below). Rather than recreating an information based site, I have chosen to share the top ten things I have learned after months of reading and researching.
Research, research, research on your own! Do not rely on any one professional for your total care. You must be your own advocate. You know your body best. Treatment that works for one person may not work for another. Stay in faith. Never give up and never stop looking for answers.
CONNECTION TO PALATAL MYOCLONUS
Palatal myoclonus may be result of Lyme disease/Babesia rather than just a manifestation of MS, vessel compression, or lesions on the brainstem. The bacteria from ticks can actually penetrate the nerve cells and damage the myelin (outer coating of the nerve fibers). I am aware of other cases where patients had both Lyme Disease and palatal myoclonus. A subset of those patients (including my son) were also diagnosed with a co-infection of Babesia. While this may not be the cause of palatal myoclonus for everyone, it may be the cause for some. There is no clear definitive answer.
Full documentation of my family's experience can be found in my books, Faith, Love & Laughter and Connecting the Dots.
Links to other sites: (Due to rapidly changing research results, research from a former Lyme conference has been removed. Please consult the Lyme Disease Association for current research)
Lyme disease is already well documented on the internet (see some of the links below). Rather than recreating an information based site, I have chosen to share the top ten things I have learned after months of reading and researching.
- First, not all doctors believe that Lyme disease and co-infection exists. For those who do acknowledge its existence, they are highly skeptical of long term treatment and doctors who provide long term antibiotics.
- Not all doctors will treat Lyme disease or co-infections if too much time has passed since infection (i.e.: in my son's case, it had been almost a decade since infection) In addition, due to pressure from insurance companies who didn't want to treat open-ended cases of Lyme, some doctors lost their licenses to practice treating this disease. Some insurance companies will recognize the disease but will only allow treatment for a specified period of time (which is not always long enough for the patient to get better and stay better). There are other doctors who either over diagnosed patients for Lyme or who took payment from suppliers of intravenous antibiotics compromising their perceived independence for diagnosis and treatment of Lyme. They too lost their licenses. Lyme treatment has become very controversial. There is not enough scientific data on treatment protocols yielding consistent outcomes.
- Diagnosis is based on clinical data including history of tick bites, symptoms and elimination of more serious conditions. Blood work is secondary and not meant to be the deciding factor for diagnosis. There are no tests that are 100% accurate. False negatives and false positives impede the diagnosis. You should NOT rely solely on blood work as a basis for diagnosis. There are a few labs that have more precise equipment and better experience to do testing. In order to get this testing, you need to find a doctor who is Lyme literate, which simply means that they understand tick borne illness and are willing to treat it. Most doctors will not advertise that they treat Lyme due to the political controversy over its treatment and out of fear of losing their own licenses to practice medicine. This is not an easy task and it will take time, research and phone calls to locate a practitioner near you. (See the link for the Lyme Disease doctor referral system listed below) And if your testing shows positive bands but does not meet the strict CDC criteria for surveillance of Lyme, you may still have Lyme despite the "negative" overall conclusion. You should get a copy of your Western Blot testing and see the results for yourself.
- Lyme is a catch all phrase used by some to refer to all tick-borne illness. In actuality, the "Lyme" tested for is Borrelia burgdorferi or Bb, but this is just one type of tick-borne pathogen. There are currently 19 species of tick borne illness (and numerous other subtypes) and testing for Lyme alone may not be sufficient, as it is one of many bacteria or protozoa that can invade and destroy the body. Other types of tick borne illness include Babesia (or Babesiosis), Bartonella (or Bartonellosis), Mycoplasma and Anaplasmosis. There are others as well. It is not practical to test for everything and it would be cost prohibitive. Based on my own limited experience, most practitioners who understand tick-borne illness choose to test for at least 3: Bb, Babesia and Bartonella. Treatment for these three, if positive, would also cover most of the other offending pathogens. (Testing may include IFA, PCR, FISH, Serology, and biopsies)
- Diagnosis is just the beginning as treatment plans vary greatly in both administration and success, but successful treatment is possible. Treatment plans range from antibiotics and herbs to acupuncture.
- Tick-borne illness may go into remission after treatment, and then symptoms may return later in life requiring more treatment. Killing these elusive pathogens is difficult as they change form and hide when attacked with medication. Total and complete eradication is impossible to test and measure once treatment is complete. It is based on the patient's quality of life and how they feel.
- The goal of treatment is to return to a normal functioning and normal living. For some, like my son, this included taking care of everything that went wrong along the way in addition to treating the underlying infection. Antibiotics alone would not have been enough to cure all the things that went wrong in his body. We had to address each and every symptom with the appropriate aggression based on how much it impacted his ability to live and function normally.
- Symptoms may be different for every patient who is infected based on their own immune system and predisposition to other disease. There is a lot of documentation that Lyme begins with a rash, then progresses to flu like symptoms and maybe fever, and then swollen joints. Long term, my son developed cranial neuralgias, tremor disorders, calcification of bone and ligaments (Eagle Syndrome) among other complications. These pathogens can impact the entire central nervous system. The infection may lay dormant until something triggers its fight for survival which then makes its host sick in response.
- These pathogens can be transmitted via the placenta from mother to child, from ticks, mosquitoes, fleas and blood transfusions. If you had Lyme disease at any point in time, you may have passed the dormant spirochetes to your child. If you have a pet, you need to make sure they do not bring ticks into the house as they can crawl onto clothing and furniture from your pet and end up on you or your children.
- Tick-borne illness and its related complications can lead to death. I know first hand because a friend of ours lost her brother due to complications stemming from long term untreated Lyme disease and Bartonella.
Research, research, research on your own! Do not rely on any one professional for your total care. You must be your own advocate. You know your body best. Treatment that works for one person may not work for another. Stay in faith. Never give up and never stop looking for answers.
CONNECTION TO PALATAL MYOCLONUS
Palatal myoclonus may be result of Lyme disease/Babesia rather than just a manifestation of MS, vessel compression, or lesions on the brainstem. The bacteria from ticks can actually penetrate the nerve cells and damage the myelin (outer coating of the nerve fibers). I am aware of other cases where patients had both Lyme Disease and palatal myoclonus. A subset of those patients (including my son) were also diagnosed with a co-infection of Babesia. While this may not be the cause of palatal myoclonus for everyone, it may be the cause for some. There is no clear definitive answer.
Full documentation of my family's experience can be found in my books, Faith, Love & Laughter and Connecting the Dots.
Links to other sites: (Due to rapidly changing research results, research from a former Lyme conference has been removed. Please consult the Lyme Disease Association for current research)
- Prevention per CDC website
- Treatment Plan by Dr. Burrascano
- Have a tick you would like tested? Here are some options:
- Labs for specialized testing for Lyme and coinfections:
- Medical Diagnostic Laboratories, LLC
- IGeneX, Inc.
- Bartonella testing specialists: Galaxy Diagnostics
- Link to Lyme Disease for the Center for Disease Control and Prevention
- Flyer: lab codes, information regarding prevention, tick checks, removal of ticks and other information Source: E.Valerio, RN
- 21st Century Cures Act to fund tick-borne research
- Video newscast from Fox5 New York
- Compendium of Tick-Borne Disease A Thousand Pearls by K. Spreen, DO (medical textbook which can be purchased through the Lyme Disease Association - click here)
- Cure Unknown by Pamela Weintraub - this book gives an excellent account of the history of Lyme and the politics surrounding the controversy of Lyme treatment
- Click here for a list of illnesses that may be linked to tick-borne illness
- Article published in the National Institute of Health regarding co-infections with Babesia and Anaplasmosis
- Lyme Disease Association
- Lyme Disease Association doctor referral system
- "Striking Back! The Trigemimal Neuralgia Handbook" by George Weigel and Kenneth F. Casey, M.D. with a Foreword by Peter J. Jannetta, M.D. found at Barnes and Noble or on Amazon