Treatment and Testing
What to expect from diagnosis through treatment, and what it really costs.
How does my child or I get diagnosed?
A Lyme-literate practitioner makes all the difference in how quickly one recovers. When choosing the right team of practitioners, you want to ask if the MD or NP has received the additional and specialized training from ILADS.org. They offer AMA-approved CME hours in tick-borne diseases necessary to help your family get on the right track as quickly as possible. You will likely want a team of practitioners helping you heal, no one person has all the answers and knowledge of all the therapies that can assist you along your journey. There are good ones out there, don't be afraid to move on if you're not getting better after a reasonable amount of time and diligent level of compliance. Expert neurologist Dr. Armon Katz told my son, when treating bartonella (or Lyme), "you have to be meticulous."
On your initial visit, your Lyme specialist will spend 1–2 hours with you and your child to take a full medical history. The full medical history includes your child's health, yours, your spouse's health, and your other children's. It is not uncommon for siblings to have symptoms, sometimes mild and seemingly unrelated. Your symptoms are important too, to help your doctor understand how the disease could be impacting your family.
Your doctor may recommend testing with specialty labs, which provide more accurate test results than the traditional testing a non-Lyme specialist might order. Although the specialty lab tests are more accurate, the test may still show a false negative or unequivocal result. The specialist may then make a clinical diagnosis based on the patient's symptoms and history.
What treatments are available for Lyme complex?
Once your doctor has provided a diagnosis, they will work with you and your child to identify the most impactful symptoms and provide an antibiotic or alternative treatment for the infections. The infections can take weeks to years to clear and typically require changes in protocol to clear them effectively.
Oftentimes, treating the infection can cause a Herxheimer reaction, or "herx." A herx happens when the pathogen is killed and the dead matter causes symptoms to worsen for a period of time. To reduce a herx reaction, you or your child may need to "detox" by doing detox baths, saunas, and/or taking a supplement that helps the body clear and recover. Work with your doctor to identify the best option for you or your child, you may need to try a few different approaches to find what works best.
Schedule Kristina if you would like coaching, she has over a decade of experience, has administered health groups of thousands of Lyme patients, and has managed to reach remission with all 5 of her family members, each requiring different treatments to address a different pathogen load, even though all the kids got it from her at birth. It's normal for each person to express different symptoms at different times, but all her kids flared during puberty.
How much do doctor visits cost?
Many Lyme specialists do not accept insurance, but most will provide a superbill with ICD and CPT codes for you to file for reimbursement yourself after paying the doctor directly. Calling or visiting your insurance website can help you understand if the doctor is in network or out, and establish how much you may be reimbursed. Don't forget to factor in coinsurance when you ask about your coverage rights for out-of-network claims.
Expect to pay for a good specialist, but it has mostly proven to be a game changer in your care:
First visit: range $700–$2,500 (typically 1–2 hours)
Follow-ups: $250–$1,000 (typically 1 hour)
How much does testing cost?
Costs for testing can be around $700 and up to include coinfections, and are usually reimbursable with most insurance plans. Call your insurance ahead to find out what is or isn't covered. Work with your doctor to determine the best option based on symptoms and budget.
Integrative medicine has utilized an FDA "investigative" tool known as Electro-dermal Screening (EDS) to identify the red flags of a patient's imbalances. This has been a game changer for Kristina and her four kids, and allowed them all to reach remission. If the diagnostic tests are looking for a pathogen in the blood where it avoids oxygen and doesn't live, it makes sense to utilize a different tool. Not medical advice, just speaking from my own experience. Some doctors use this tool alongside traditional labs for a more thorough picture.
Send the tick in TX if attached to a human for testing: dshs.texas.gov tick submission testing →
How much does treatment cost?
Many antibiotics are available at your local pharmacy through your insurance, or sometimes reimbursable if prescribed from a compounding pharmacy. Your doctor may also recommend vitamin and detox supplements, which usually can be purchased on Amazon or another online store. Vitamin IVs can also be ordered to help lessen the burden on the body.
After using Electro-dermal Screening, Kristina paid $20–$30 a bottle for the targeted homeopathy, herbals, and supplements identified to clear and correct what showed up in the investigation. These last months, making this method an affordable option for patients. Not medical advice.
How can I submit bills to my insurance?
Some patients have enjoyed using medicalbillgurus.com, who provide a free estimate of their services and charge a small percentage of what's reimbursed. Check how far back you can file, some plans allow 12–18 months. Even if a claim is denied, check the fine print for why, get any additional requested documentation from the doctor, and appeal, appeal, appeal. Keep a spreadsheet to track claims once reimbursed. Some patients with cognitive difficulties might consider letting a professional filer help them.