Lyme Disease: The Hidden Epidemic Part 5
In this article:
What is Hannah’s progress, and what is happening with mom Christina and siblings Isaac & Victoria?
You or your child gets a tick bite. What do you do? And what is a good symptom checklist to review if you feel you may have Lyme disease?
More revealing patient profiles to aid your own understanding and recognition
In the past weeks of writing these articles, I continue to learn and see where more education and knowledge are needed. (I spent days shadowing and learning from Dr. Kim Lentz here and will travel to Washington DC in June to shadow and learn.) 4 Show me the right path, O Lord; point out the road for me to follow. 5 Lead me by your truth and teach me, for you are the God who saves me. All day long I put my hope in you. – Psalm 24:4-5
My last article, Part 6, will be a concise summary of what you must remember (or keep in handy reference) with a section for everyone and a section for health care professionals (HCP).
Of Special Note, Please Remember:
Lyme disease (or Lyme BC = Lyme borreliosis complex) is a clinical diagnosis made by you and your Lyme experienced physician or HCP listening and evaluating your history and symptoms together. (In the Indianapolis area, Excell for Life Family Care & Pediatrics holistic providers have much Lyme experience.)
THERE IS NO TEST OR PROCEDURE THAT CAN DIAGNOSE LYME DISEASE, and a negative standard Lyme test does NOT mean you do not have Lyme disease, and a positive test does not mean you must be treated.
The only reliable testing which may only help with the clinical diagnosis is the western blot IgG/IgM for Borrelia by IgeneX laboratories. Do NOT get testing from a traditional lab company because they are not sensitive enough to help in the diagnosis.
There is evidence is that any type of tick may transmit Lyme disease or similar bacteria and co-infections.
Remember I, Dr. Lisa Miller, knew nothing about Lyme disease in Indiana or anywhere outside of the New England states until 1 year ago, and most doctors and HCP outside of the New England states are equally unaware.
ILADS (International Lyme and Associated Disease Society) and many countries recognize the extreme seriousness of Lyme BC and co-infections. They recommend aggressive prevention and treatment (for example, in France many people with Lyme disease are hospitalized to receive IV treatment), but our IDSA (Infectious Disease Society of America) & CDC (Center for Disease Control) does not recognize a need for aggressive treatment
My Journal Entry November, 2014
Hannah and her family return to Excell for Life with their calendars that document their progress. Hannah has had new Herx reactions of mild tremors in her hands and joint pains, but many of her other symptoms are gone. Dr. Jemsek clinic changed her cycles to include Malarone, Artimisinin, Minocycline, Cefdinir, & Flagyl to continue hitting the Lyme and co-infection Babesia. They added Lactoferrin and Xylitol break up biofilms (which bacteria make to protect themselves against our immune system and antibiotics) to get to and kill bacteria better. We have cleared out brush and are going after deeper seated bacteria!
Hannah’s diagnosis: tremors, joint pains, rash, muscle cramps, vision changes, stiffness, recurrent abdominal pain, fever, dyspnea, tachycardia, fluctuating severe fatigue, syncope, bladder pain, leg swelling, food sensitivity; vitamin deficiency
Christina (treatment from Dr. Jemsek), Isaac and Victoria (treatment by Dr. Lisa and consulting with Dr. Jemsek clinic when needed) continue on their antibiotics, probiotics and detox. They are improved in many things, but still having Herx reactions. We continue treatment with thanks and prayers! “You can do ALL things through Christ who strengthens you!” Phil 4:13
Potential Symptoms:
Hearing: buzzing, ringing,
Decreased hearing
Increased motion sickness,
Vertigo, spinning
Off balance, “tippy” feeling
Lightheadedness, wooziness,
Unavoidable need to sit or lie down
Tingling, numbness, burning or stabbing sensations,
Shooting pains,
Skin hypersensitivity
Facial paralysis
Bell’s Palsy
Dental pain
Neck creaks and cracks,
Stiffness, neck pain
Fatigue, tired
Poor stamina
Insomnia, fractionated sleep,
Early awakening
Excessive night time sleep
Napping during the day
Unexplained weight gain
Unexplained weight loss
Unexplained hair loss
Pain in genital area
Unexplained menstrual irregularity
Unexplained milk production;
Breast pain
Irritable bladder or bladder dysfunction
Erectile dysfunction
Loss of libido
Queasy stomach or nausea
Heartburn, stomach pain
Constipation
Diarrhea
Low abdominal pain, cramps
Heart murmur or valve prolapse?
Heart palpitations or skips
“Heart block” on EKG
Chest wall pain or sore ribs
Head congestion
Breathlessness, “air hunger”
Unexplained chronic cough
Night sweats
Exaggerated symptoms or
Worse hangover from alcohol
Symptom flares every 4 wks
People at Increased Risk & Lyme Checklist of Possible Symptoms
People at Increased Risk of Tick Bites and Lyme Disease: campers, lawn care and forest workers, hikers, golfers, gardeners, outside workers or athletes, living in a wooded area, pets who may carry ticks indoors, hunters, fishermen, doing yardwork, walking in high grass
List of Possible Symptoms from ILADS Guidelines >
My Journal Entry December 2014
Hannah and mom are a little discouraged because they have seen no new areas of improvement in the past month and keeping on the treatment takes persistent effort (especially with 4 people being treated in their home). We add the biofilm busters to Isaac and Victoria’s treatment, and Christina is now on the Babesia/Lyme/Biofilm medicine cycle.
I remind Christina and her great children that Lyme treatment is a marathon with many up and down twisty curves to achieve your healing. Times of little change or even worsening often mean we are peeling back more layers of the onion to kill the deeper bacteria and bring lasting healing.
Christina: dizziness, feeling aloof and detached, nausea, general weakness and fatigue, headaches, insomnia, sensory overload, irregular periods, air hunger, noise sensitivity, night sweats, vision changes
Isaac: neck pain, headaches, fatigue, worsening school performance and attention problems
Victoria: recent tick bite, continued bed wetting, and joint pains
Reviewing their symptoms and progress brings renewed gratefulness at finding the diagnosis, thankfulness in their progress, and hope for the future and what the next month will bring! (And I will give you a little hint before article 6 where I will give you their progress up to date… it looks good!)
The Tick Bite!
You discover a tick on you or your child! What do you do, and how do you or should you treat the bite? What does the CDC/IDSA and ILADS recommend similarly and differently? Just this past week I have had three patients suffer tick bites (20 year old Mike away at college in Ireland who saved the tick and is sending it for testing, 5 year old Lilly here in Indy with a rash at the site, and 9 year old Evan here in Indy) …
First, have on hand at home all you need to prevent tick bites and utilize it! (see my 2nd article, and things like tucking in your clothes, spraying your clothes & shoes with permethrin spray, and using Avon Skin SO Soft or Deep Woods Off with DEET)
Removing a Tick
Use tweezers or forceps (purchase them for you home and travel). Grasp the tick mouthparts close to the skin. Avoid squeezing the tick which may spread infected fluids. Pull the tick straight out (do NOT twist or attempt to burn the tick). Save the tick (in a closed plastic bag best with a moist cotton ball) and consider having it tested for Borrelia (Lyme bacteria) and co-infections. Wash the bite site and your hands with soap and water. Apply alcohol or other disinfectant. Make sure the tick you removed is the last tick on the person (and check everyone else exposed).
You can view and print off a form to send in the tick for testing at IgeneX (google IgeneX tick testing). I recommend testing any tick that was attached to check if it has Lyme (and maybe even a tick you find around your home). It is $68 for the Lyme Borrelia test (which is all I recommend doing, because if it is positive then co-infections are likely).
Do not be deceived into thinking you have plenty of time to remove a tick, because there have been many reports of Lyme disease even after a very brief bite (which does make common sense, because it has broken the skin just like an infected needle).
To Treat or Not To Treat A Tick Bite: Think about Prevention of Acute & Chronic Lyme
The CDC/IDSA recommend:
treating a tick bite the day of removal with doxycycline 200mg one time only for adult
treating a tick bite if there is an erythema migrans rash (bulls-eye Lyme rash)
watching for symptoms after a tick bite and treating only if symptoms
consideration of prophylactic treatment after a tick bite only if: it is a deer tick, attached for 36 hours, prophylaxis is started within 72 hours after removal, the rate of Babesia infestation in local ticks is greater than 10%
ILADS recommend:
consider prophylactic treatment for any tick bite of any length on a case by case basis (on health and prior history/how many past tick bites, area of country) and send off the tick to be tested for Borrelia
a wait and see approach can be very risky because of the many problems in getting appropriate diagnosis and treatment, so why take the risk? (acute Lyme disease may become progressive, even to permanent disability and death)
If no rash or symptoms with a tick bite: consider on an individual basis…
for adults doxycycline (or minocycline) until the tick testing comes back, or if not able to send tick consider doxycycline 200mg (or minocycline 100mg) and cefdinir 300mg (or amoxicillin 1500mg) twice daily for 14 days (to cover Lyme and possible co-infections)
for children less than 8 years of age, amoxicillin until tick testing comes back, or if unable to send tick consider 14 days of amoxicillin (80mg/kg/day) and Zithromax (10m g/kg/day)
for pregnant women: amoxicillin 2000mg twice daily and Zithromax 500mg daily for 14 days (or just until tick testing returns)
Rash or symptoms with a tick bite: consider on an individual basis…
for adults: doxycycline 200mg (or minocycline 100mg) with cefdinir 300mg twice daily for 4-8 weeks
for children less than 8: Zithromax (10mg/kg/day) and amoxicillin (80mg/kg/day) for 2-8 weeks
for pregnant women: amoxicillin 2000mg twice daily and Zithromax 500mg daily until delivery
Sample Patient Profiles:
Martha update (over 26 years with increasing symptoms of fatigue, migraines, dizziness, rheumatoid arthritis, tinnitus, brain fog, memory loss, increasing food sensitivity/IBS and more!): I am SO very thankful to God that even though I didn’t find her underlying diagnosis for 26 years, she is significantly better after 3 months of treatment. We have a long way to go getting to all the deep seated infection and co-infections, but she is finally improving and has SUCH a brighter future!
Warners’ update (all bitten on trip to Michigan May, 2012): Mom Nicole (severe fatigue/brain fog, joint aches, headaches, dizziness) is better but continues treatment cycles with Herxing; David age 8 (new significant ADD & fatigue making him unable to attend school, joint pains, neck pain, fatigue, food sensitivity) & Isaiah age 5 (fatigue, food sensitivity, shortness of breath, abdominal pain, and nosebleeds) are both MUCH better and nearly done with treatment and able to attend school!
Nathan Warner age 2 (who acquired the disease in utero) has significant food sensitivities/IBS, insomnia/fatigue, sweats and frequent infections but still is developing normally. He is going to start treatment at age 3 because that is the time for best response (unless progressive worsening/abnormal development is seen). Children before puberty are generally easier to treat
Pregnant Elizabeth update (severe fatigue, joint pains, brain fog, headaches, vision changes which have gotten better with treatment during pregnancy): delivered a healthy baby last week after 6 months of daily Amoxicillin and Zithromax, and we are prayerfully awaiting the baby IgeneX testing! She has decided to breastfeed until the IgeneX Lyme results are back (will have to continue daily antibiotics if she continues breastfeeding, or may stop nursing and start the 3 – 4 antibiotic cycles to treat her Lyme disease and co-infections).
Diana update (tick bite 2011 with progressive symptoms of fatigue, migraines, joint/neck pain requiring several narcotic pain medicines daily, and occasionally other symptoms): with Herxes but significantly better over 6 months of treatment and off all pain medicine, but recent worsening with a new cycle to get to deeper infections (still off pain medicine, but this is the roller coaster cycle frequent with Lyme disease that you go down while killing deeper bugs until you get then higher up toward healing and recovery)
Jason age 12: Sudden onset of new onset grand mal seizures January 2014 while on vacation in Florida. Emergency brain scans, spinal tap, multiple lab testing and 4 neurologists later Jason and his family had no answers (tested negative for all possible causes including infection and Lyme). He was on THREE seizure medicines and still having seizures, along with severe brain fog and memory loss and being unable to think or go to school. Jason was told by Mayo clinic that there was nothing else they could do…
Thankfully Mom Jennifer had heard that hidden Lyme disease & Bartonella co-infection could possibly be a cause of these symptoms. She took Jason to see Dr. Susan Marra in Seattle, Washington. IgeneX testing showed only a few trace bands, but clinically Jason fit Lyme & Bartonella. After 2 months of antibiotic therapy, Jason’s seizures finally stopped in July 2014! Dr. Marra continued cycling through antibiotic therapy to hit Lyme and co-infections, and by October Jason’s personality and brain was so improved that he could restart school and start weaning his three seizure medicines. Jason’s neurologist here in Indianapolis would not believe his improvement was due to treating Lyme disease & co-infections, but he had no other explanation.
Jennifer found me, Dr. Lisa and Excell for Life Family Care & Pediatrics online, and started seeing me at Excell in November 2014. They are absolutely thrilled to never have to see that neurologist who would not listen to them again, and we are slowly weaning Jason’s seizure medicines without any problems. Jennifer (with some occasional bottom of her foot pain, hair loss, and forgetting words) and Jason’s Dad just tested positive. Jennifer is starting treatment, but Dad is not because he has little symptoms (and will continue to closely monitor). They want their 2 younger daughters tested. Also, on looking back at Jason’s history before the seizure onset, they did remember some occasional mild tremors of his hands and occasional fatigue.
Jordan age 35: He was bitten last May, 2014 on a Boy Scout camp-out in Kentucky. He had no rash and no symptoms until September, continuing his active volunteering at church, loving his wife and children, and work as an accountant. Starting in September, Jordan developed progressive recurring symptoms of fever, joint & muscle aches, red irritated eyes (unable to wear his contacts), fatigue & brain fog, headaches and head tremors, eye twitching, light sensitivity, and decreased libido and erections. He saw many of his doctor friends, family doctor, infectious disease specialist, and neurologist. No one had any explanation and all his lab testing was negative (including a Lyme test through a common lab company). Jordan could hardly work at his job any longer (only able to work at most ½ days), and was filling out disability paperwork. A doctor friend gave him 2 weeks of doxycycline antibiotic, but said he could prescribe no more.
Thankfully another friend knew about us at Excell, and Jordan saw me January 2015. He told me that he did feel somewhat better while on the doxycycline, so I continued this until his IgeneX testing was back. IgeneX more sensitive western blot showed 4 positive IgM bands (indeterminate to 1+ positive, including 3 of the more specific bands), and 5 positive IgG bands (indeterminate to 3+ positive, with 3 of the more specific bands positive). I started Jason on Dr. Jemseck Monday Wednesday Friday 3 – 4 antibiotic Lyme/Bartonella protocol with 2 weeks on and 1 week off for 4 cycles. Into just the second of 4 cycles he is feeling MUCH better and able to work nearly a forty hour week! I expect his therapy will not take as long to complete with the infection starting last May.
Carly age 20: She is a honors student attending my alma mater Purdue University and has a sister I am treating for Lyme disease (who had a known tick bite several years earlier). The past year Carly notes some increasing anxiety and insomnia, better with low dose Celexa medicine and two nightly Kavinase PM (great natural insomnia supplement). Since last Fall Carly has had red forearms after jogging with no explanation. She has no known tick bite. Her only known risk of exposure is her sister with a tick bite years ago (while on vacation out West) & Lyme disease now, and her family living on a wooded lot in a NW Indianapolis subdivision.
Late Fall 2014 Carly started having bloody stools and a GI doctor diagnosed autoimmune ulcerative colitis. February 2015 she had acute severe 2 to 3 hours of chest pain with shortness of breath and worse with even walking. Carly was admitted that night to the hospital in Lafayette and with significantly elevated heart muscle enzymes (showing heart muscle damage). Testing showed myo-pericarditis which over a month resolved except for continued new occasional elevated blood pressure (no family history of hypertension). I talked with her cardiologist during her hospital stay about her sister having Lyme disease, but he felt it was caused by a virus and since she was better that she needed no further testing. Once Carly was back in Indy in March, an IgeneX western blot showed 7 positive IgM bands (4 higher risk positive bands and IgeneX and CDC positive) and 4 positive IgG bands (2 higher risk positive bands and IgeneX positive). With finals coming up and after consulting with Dr. Lentz and Jemseck clinic with their longer experience, I started Carly on just Minocycline (want to avoid Herxing but keeping the Lyme bacteria hopefully from worsening) and nightly immune supplement aid Low Dose Naltrexone. She just got home for the summer, and we will begin in depth treatment.
Angela age 35: She was a passionate, talented school teacher until an acute onset and progression of illness 3 years ago. She saw me February 2015 with the following problem list, after innumerable specialists and a trip to Mayo clinic and finding no known reason for her horrible SO sad daily debility and suffering: daily nausea and vomiting, multiple food sensitivities and only able to tolerate a very bland high card diet, severe obesity (despite very very low calorie intake), total colectomy (removed because of very severe constipation by a surgeon who told her 2 months after her surgery that they found they are no longer recommending this), severe chronic fatigue and fibromyalgia, daily migraines, recurrent skin rashes and pigment loss, vision loss, ADD and brain fog, memory loss, severe depression, bladder problems, abnormal nonspecific changes on her brain MRI, her only child died last year 2 days after normal birth and normal exam last year (and autopsy was normal), of course now on total disability and being cared for by her parents…
I prayed with her in the exam room (as I often do with my patients) and also down on my knees in my office. Only God’s so awesome love and power and wisdom can bring Angela healing. I ordered detailed labs and IgeneX Lyme testing, which showed some vitamin deficiencies and positive IgeneX and CDC IgM (3 positive bands with 2 higher risk) and IgG with 2 higher risk bands positive. I am replacing Angela’s vitamin deficiencies, and because of her severe case referred her to local Lyme specialist Dr. Kim Lentz. Angela is just starting IV antibiotics to treat the deep seated Lyme and co-infections because of her daily nausea and vomiting. Thankfully since she is also on Medicaid, they will pay for her IV therapy. Almost no other insurance companies will pay for continued IV therapy because it is very expensive and does not fit in their coverage protocols. Sadly, many patients seen by Lyme specialists eventually require IV therapy because of severe symptoms or lack of responsiveness to oral therapy.
Don age 63: He has significant tick exposure in Brown County with owning a summer cabin there. He wanted testing even though his only unusual symptom is R upper abdominal pain. His IgeneX is only mildly positive for the 41 band, so we will watch him for any increased symptoms AND he now will take tick bite precautions for himself and all his extended family and grandchildren!
Lyme Tip: Update on Lyme resources… www.ILADS.org, LymeDisease.org, IndianaLymeConnect.com; 1st Saturday of month at Zionsville Library, 250 N 5th Street, 46077 at 2-4pm – an Indiana Lyme Connect meeting open for everyone to help support and inform and teach about lyme disease – OR 2nd Saturday monthly meeting 2-4pm at Bloominfoods Community Room 316 W 6th St Bloomington IN 47404 (near west side location); Very good books…”The Beginners Guide to Lyme Disease” by Nicola McFadzean, “Lyme Disease Solution” by Dr. Singleton MD, “Why Can’t I Get Better?” by Dr. Horowitz MD, and “Compendium of Tick-Born Disease” by Dr, Spreen DO.
Action Tip: Read my 2nd and 3rd article Lyme disease to purchase needed supplies to prevent tick bites. Look on ILADS or Indiana Lyme Connect websites for ways to donate to and help heal and prevent Lyme Disease! Keep forwarding my articles to everyone you know to read and learn!
