Make sure you research tick disease symptoms, treatments, and lifestyle behavior support.
If you are told any kind of declarative statement about Tick disease like, "You'll be better after 4 weeks of Doxycycline 100 BID, or Babesia is very rare; I don't think you have it. (I was told both statements, and both were wrong), Find a doctor who knows how to monitor the markers and clinical symptoms you have and who understands that tick disease may present differently in different people.
Tick disease is the most misdiagnosed disease in America. Lyme testing is only 65 percent sensitive in the normal population and less than 50% during the acute symptoms, and even less than that once you are on doxycycline. The average misdiagnosis in pediatric lymes is 7. Borrelia/Lyme never comes alone, and not all the co-infections are treated with Doxycycline.
Doxycycline is a suppressive medication in some individuals, so you may need to seek other treatment options. Furthermore, there is no study that proves four weeks eradicates lyme and co-infections (Embers, et al.) When looking for doctors, make sure that the doctor is ilad.org affiliated, as tick disease is often a clinical diagnosis since testing is so sensitive. Don't wait or rely on standard anti-body test results. Bartonella is a more common infection than Borrelia (For more accurate testing, your doctor should send your blood on a Monday-Wednesday in a lavender top test tube to Igenyx Lab In Palo Alto where they include testing bands 31 and 34. The local labs do not include these bands. and most doctors don't know the meaning of other labs relate to tick disease.
Other markers that you should have tested to help indicate borrelia and co-infections include: CD 57 (a white cell that decreases with borrelia (Stricker, R.)), VEGF, TNF-Alpha, Interleukin 1B, Interleukin 6, ECP, MSH, white cell count, the presence of EBV, CMV, mycoplasma, mycoplasma pneumonia, and chlamydia.
You & your doctor should know that low WBC is indicative of lyme, that's a fever over 100 is lymes plus ehrlichia and/or babesia, that a low platelets is indicative of tick disease, that swollen lymph nodes and liver can indicate lyme, that a fever over 100 often indicates ehrlichia and/or babesia. I recommend reading Dr. James Schaller's Bartonella (more common than lymes) and babesia books to learn more about these common deadly and/or life altering co-infections. Other doctors who understand the complexity of tick testing include Dr Katherine Harbor in Lexington, Dr. Hollis in Roanoke; Dr. Talty in Salem,, Dr. Jemsek (specialty clinic, Dr Kenneth Singleton in MD, and dr Zhang in NY. Call many ILAD-associated lyme doctors to get an appointment since there is a waitlist.
WHAT TO DO: 1.) Save the tick & have it tested 2.) Log your symptoms 3.) Know your co-infections 4.) Stop thinking the bulls-eye rash is the only way you consider tick disease as a reason for your symptoms (maybe 20 percent of bites result in that rash) take photos of any dermatological changes with a reference item like a quarter note the severity of the symptom with a 1-10 scale 5) Go to an ILADS associated Dr./Tick Disease Clinic to make sure co-infections are fully addressed. |
OTHER LABS you should test for tick disease:
CD-57 VEGF: high bartonella, but very low in the presence of babesia ECP: very low in presence of babesia White cell count: (mine was 3k indicative of babesia) TNF-alpha IL6 ILB1 RESOURCES Dr James Schaller BARTONELLA and Babesia ; Updates in Babesia 2009 Checklists for Bartonella, Babesia, & Lyme Disease, 2012 (*excellent list of possible symptoms per body system for each co-infection.) ILAD.ORG pages 25 and 26 of treatment guidelines is how I correctly self diagnosed babesia despite Under our Skin documentary (you tube or DVD at library for free check-out) Tick Borne Alliance: tbdalliance.org Burrascano's Lyme checklist of symptoms (Also on the ILAD website) |
What is the reality of Tick diseases? Here are just a few of the side effects/symptoms I've experienced:
- Stabbing pains
- Feeling of impending death
- Cardiac arythmias
- Lyme meningitis
- No patellar reflex
- Dagger in the eye headaches
- Temple to temple vice headaches
- Crushing headaches like a hermit crab were eating my brain (and 5th cranial nerve inflammation)
- Epileptic like contractions In face and arms
- Episodes of sleep paralysis of 10-15 minutes
- Sleep Terrors whole paralyzed
- Debilitating fatigue
- Unable to speak or hold body weight upright
- Stabbing pains
- Parasthesia numb arm
- Atonia (no strength in muscles)
Schedule a time to talk with Erin to about Tick Disease:
Because of overwhelming requests for Erin's time regarding tick disease questions, she requires a payment & appointment to honor healthy boundaries.
Because of overwhelming requests for Erin's time regarding tick disease questions, she requires a payment & appointment to honor healthy boundaries.
Before booking please review the following:
1) Consultations can only occur if you agree to the following:
2) You understand that a negative tick test does not rule out tick disease
3) You understand that there are many tick diseases that ticks give, not just LYME
4) You understand that if you wait to see what "they" say about your diagnosis without researching anything yourself, Erin can't have a consultation with you
5) Email erin@empowerpilates.net to schedule
Disclaimer: Erin is not a medical physician. Consult cost are due to the overwhelming demand on Erin's time for people with Tick disease questions. Information provided is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of a qualified health provider with questions you may have regarding medical condition.
1) Consultations can only occur if you agree to the following:
2) You understand that a negative tick test does not rule out tick disease
3) You understand that there are many tick diseases that ticks give, not just LYME
4) You understand that if you wait to see what "they" say about your diagnosis without researching anything yourself, Erin can't have a consultation with you
5) Email erin@empowerpilates.net to schedule
Disclaimer: Erin is not a medical physician. Consult cost are due to the overwhelming demand on Erin's time for people with Tick disease questions. Information provided is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of a qualified health provider with questions you may have regarding medical condition.
My experience with tick disease
In 2014, I contracted Lyme (Borrelia) disease and the co-infections Babesia, Bartonella, and Ehrlichia, and lyme meningitis and tested positive for EBV, CMV, Mycoplasma, and mycoplasma pneumonia. For about 2-3 years I suffered from epidsodic sleep paralysis, epileptic-like tremors, disabling fatigue, period of struggling to walk even short distances, extreme short term memory loss, crushing headaches, arm numbness, loss of a knee reflex for two years, wrist pain, neuralgia, extreme weakness, hot flashes, weight loss, random stabbing pains, swollen lymph nodes the size of grapes, extreme sadness, apathy, dizziness, nightmares, falling asleep at inappropriate times. I share this to expose the variety of symptoms with tick disease and that there is more to tick disease than having a bulls eye rash.
In 2014, I contracted Lyme (Borrelia) disease and the co-infections Babesia, Bartonella, and Ehrlichia, and lyme meningitis and tested positive for EBV, CMV, Mycoplasma, and mycoplasma pneumonia. For about 2-3 years I suffered from epidsodic sleep paralysis, epileptic-like tremors, disabling fatigue, period of struggling to walk even short distances, extreme short term memory loss, crushing headaches, arm numbness, loss of a knee reflex for two years, wrist pain, neuralgia, extreme weakness, hot flashes, weight loss, random stabbing pains, swollen lymph nodes the size of grapes, extreme sadness, apathy, dizziness, nightmares, falling asleep at inappropriate times. I share this to expose the variety of symptoms with tick disease and that there is more to tick disease than having a bulls eye rash.