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LYME TREATMENT: FREQUENTLY ASKED QUESTIONS
If you need clarification or more information on any of these questions, please leave a message on the portal for one of the office staff to answer.
The portal is monitored throughout the day so this is the quickest way to receive an answer. If you haven’t received a response in 3 days, please call the office and leave a message if someone is not able to answer the phone.
DEFINITIONS & SYMPTOMS
Lyme is an illness caused by Borrelia bacteria which is classified as a spirochete. There are many species of Borrelia that can cause anything from long-term infection without symptoms to chronic illness ranging from mild to severe.
Ticks and other biting arthropods can transmit many pathogens at the same time so “Lyme disease” is increasingly thought of as the collection of Borrelia bacteria plus any co-infections with other bacteria that are present in the same patient. Some common co-infections include Bartonella, Babesia, Anaplasma, tick-borne relapsing fever, and Ehrlichia.
In addition to these co-infections, it is possible to have a bacterial infection that is not technically Lyme but can produce the same range of symptoms.
Bartonella is a different class of bacteria than Lyme, but it can cause similar symptoms. It is spread by ticks as well as other biting insects like fleas, lice, ants or spiders.
In our experience, some symptoms predominantly found in Bartonella infection as opposed to Lyme include arthritis of the sternum and sacroiliac joints, inflammatory arthritis, sudden muscle weakness, stretch marks, jerking of large muscle groups, inflammation of the eye, POTS, enlarged spleen, fevers, break down of the red blood cells, low white blood cell count, low platelets, elevated overall inflammation, or a sense of internal vibration and twitching.
Sometimes symptoms flare in the morning and late afternoons.
If I offer you pulsed treatment therapy, then I am relatively confident that you have Lyme and/or co-infections causing your illness.
Currently, the testing available for Lyme and co-infections is not foolproof so these diagnoses are made based on symptoms and all the tests that are available. Diagnosis doesn’t hinge solely on one or the other in isolation. The presence of a Herxheimer reaction to antibiotics or blebbing can further strengthen the diagnosis.
Please see our Blog article on diagnosing Lyme disease for more information.
Brain fog is an umbrella term defined differently by different patients. It is not a medical term but more of a description of the “fogginess" that patients experience.
Patients complain of an unpleasant feeling of fullness, static or cotton in their head. Others describe being easily distracted, as they might imagine ADD to feel, or a feeling of disassociation, disconnectedness or floating. Others describe feeling confused and/or complain of poor memory, which can range from mild to severe. Some patients report that brain fog causes them to feel anxious or panicky.
Lyme disease is not classified as an autoimmune disease itself, but it can trigger immune system dysfunction that mimics or exacerbates autoimmune conditions. In some patients the infection may provoke an autoimmune response leading to symptoms. This occurs because Lyme bacteria can disrupt or hijack the immune system causing the body to mistakenly attack its own tissues. The overlap of symptoms can often lead to misdiagnosis complicating and delaying patient treatment and recovery.
Common autoimmune disorders associated with Lyme infection include but are not limited to: Rheumatoid Arthritis, Psoriatic Arthritis, Lupus, Fibromyalgia, Hashimoto’s, Autoimmune Neuropathy, Multiple Sclerosis, Inflammatory Bowel Disease, Celiac Disease, Sjogren’s syndrome.
TREATMENT OPTIONS
If you do an internet search or any reading into Lyme treatment protocols, you will quickly learn there are a lot of options and a lot of practitioners with “the cure”. The reality is, each treatment for Lyme and co-infections is as unique as the patient. Your treatment will be tailored to your needs after all the testing information has been gathered.
I have developed and adapted my protocol based on those developed by Dr. Steven Phillips, my personal experience with treatment and the clinical experience of my patients. Dr. Phillips reports a 90% success rate over the course of treating over 20,000 patients so this has been a solid place to start. While I am not opposed to you using other protocols, I cannot administer them since I am not trained in their specific use.
We will take into account any information on previous treatments for Lyme that may have failed or how you have responded to previous rounds of treatment. Your symptoms should lessen over time but it is important to understand that healing from Lyme can feel like two steps forward and one step back at times. This is to be expected so please don’t be discouraged. There will be glimpses of hope along the way.
SOT is a type of gene therapy that uses short pieces of genetic material as a “key” to block an essential function of a target organism. The effect is like “throwing a rock into the gears” of the bacterial function, disrupting its ability to grow and reproduce.
To develop your SOT a blood sample will be sent to a specialized lab to create a custom therapy for your specific bacteria. It will be administered as a one-time IV infusion and will remain active for about 6 months.
You and the physician may choose to use SOT for one or more organisms as an adjunct to additional treatments, but only one species of bacteria can be targeted with each round of SOT. If Borrelia bergdorferi is present, it will always be treated first.
We find this therapy to have a cumulative effect thus improving the success of treatment and aiding in clearing Lyme bacteria and co-infections. Additional treatments can continue for as many organisms as the patient can afford.
SOT is optional, but recommended for every patient especially those with fewer organisms to clear.
SOT can be used as a stand alone treatment depending on the patient’s unique health circumstances and may be warranted if pulsed medications will be too hard on the body.
SOT may be recommended if you have already been through the full treatment protocol but are still experiencing symptoms or testing shows there is still some lingering infection.
On average, results with IV antibiotics don’t seem to be better than those achieved with oral antibiotics and there are more risks associated with IV delivery. Historically, IV antibiotics were thought to be necessary for patients with Central Nervous System Lyme infection, but it is no longer considered to be the only option for treatment.
For patients with chronic Lyme who have failed other treatments, IV antibiotics remain an option, however, this is not guaranteed to cure a Lyme infection on its own.
Pulsed treatment for chronic Lyme disease means taking various prescription medications, nutraceuticals and herbs in intermittent cycles punctuated with “rest” periods when prescription medications are not taken.
Generally, a pulse is 2 to 4 weeks on prescription medications and then an equal number of weeks off.
Studies have shown that pulsing treatment for chronic Lyme infection has a better effectiveness in killing off live, active bacteria as well as persister state (hibernating) bacteria as compared to a single application of an antibiotic.
TREATMENT PROCESS
When using a pulsed therapy, spirochete bacteria like Borrelia do not develop a resistance. Basically, and very simplistically, they never get the opportunity. In order to develop resistance, the bacteria would need time to create a genetic alteration to pass down to the next generation.
If treatment is administered long-term, the pressure of the threat would drive the bacteria to make the genetic changes necessary for resistance. When using a pulsed therapy, the pressure doesn’t last long enough to drive the change before they are targeted again during a growth phase.
The absorption of some antibiotics is blocked by certain foods typically found in a healthy diet. These foods can bond with the medication making it difficult or impossible for your body to use it properly. It will be important for you to take prescription medications according to the schedule and diet changes you receive with each pulse.
No, I do not prescribe narcotics for pain, but I can prescribe non-narcotic pain medications. If you still have severe pain which is not controlled by available therapies and requires pain management, it is best to see a pain specialist.
Lyme can only use glucose as a fuel source. Studies have shown that Lyme bacteria do not produce any of their own materials for growth or reproduction so they find what they need from our blood, tissues and joints. Glucose is always present in our bloodstream, brains, muscles, joints and other areas of the body so the patient needs to do what they can to eliminate foods that break down into glucose during digestion that will add to the Borrelia food supply.
Limit these high glucose foods including:
- Grains and starches: wheat, corn, oats, bread, pasta, rice
- Fruits: especially high glycemic (bananas, pineapple, grapes, dried fruits, etc.)
- Starchy vegetables: corn, potato, squash
- Starchy root vegetables: potato, beet, sweet potato cassava
- All Dairy: except butter, 24 hour yogurt, lactose free milk, and cream
Patients find Dr. Wahls Protocol or a ketogenic diet helpful.
REACTIONS TO TREATMENT
Sometimes flare ups of symptoms can occur after intensive exercise, sauna or massage. Opt for gentle versions.
Your body will be working hard and will need adjustments to your lifestyle to be most successful.
Consider reducing your stress levels, a low glucose diet, and optimizing your sleep.
A Herxheimer reaction is a flare of prior and/or new symptoms in association with pulsed therapy. This reaction typically occurs within 48-72 hours of starting a pulse of treatment and can last for days to weeks depending on the severity of infection and the body’s ability to clear out the dead bacteria and other by-products.
A Herxheimer reaction can occur at different points of treatment depending on the drug used and the type of infection. Reactions can range from mild to severe and can be during the weeks taking an antibiotic or during the break between antibiotics.
Bacterial Die-off
As antimicrobials kill off the bacteria, they release endotoxins and other inflammatory substances into the bloodstream which can trigger a cytokine storm causing inflammatory responses throughout the body and thus a multitude of symptoms.
Blebbing
Blebs are “microbial dandruff”. These small particles are shed from the surface of the bacteria into the bloodstream during a Herxheimer reaction. While not the cause of a Herxheimer reaction, blebs act as a decoy to confuse the immune system and activate inflammation much like the original bacteria.
Blebbing can occur during treatment as well as during a break in treatment so it is possible to experience a Herxheimer reaction during the first week of your break between pulses.
Overwhelmed detox pathways
When the bacteria die off, the released toxins need to be removed from the body through several detox pathways. The liver, kidneys, lymphatic system and gastrointestinal tract process and eliminate these toxins. Poor hydration, nutrient deficiencies, or pre-existing dysfunctions can make it difficult for these systems to keep up with eliminating the toxins leading to exaggerated inflammation and a prolonged or severe Herxheimer reaction.
A Herxheimer reaction is occurring because the body is trying to get rid of the dead bacteria and the toxins released from the die-off faster than it can completely process them.
- Fever & chills, or other flu-like symptoms
- Headache, migraines or eye pain
- Muscle and/or joint pain
- Fatigue and exhaustion
- Nausea or vomiting
- Sweating or flushing
- Rapid heart rate
- Heart palpitations
- Low blood pressure
- Shortness of breath
- Cognitive issues (brain fog, memory lapses)
- Severe anxiety and/or depression
- Other psychiatric symptoms
- Sleep disturbance or insomnia
- Skin flare-ups (rash, lesions)
- Tingling or numbness
- Digestive upset (bloating, diarrhea, abdominal pain)
The following are all good reasons to go to the ER but this is not an exhaustive list so please use your best judgment.
- A fever over 100.5 F. without an obvious source
- Severe chest pain or shortness of breath.
- Rash, bruising or rectal bleeding
- Significant nausea or vomiting
- Watery mucosa or bloody diarrhea
- Hearing or vision loss
- The worst headache of your life
- Passing out
- Seizure or stroke like symptoms
Please feel free to call the clinic if your symptoms seem severe and you are still unsure if an ER visit is in order.
The term “detox” is not a traditional medical term and everyone has a different idea of what it means. Your liver, kidneys, skin, and gastrointestinal tract are working to process and eliminate any toxins (substances that interfere with normal cellular function and can cause harm). “Detoxing” is the process of supporting your body’s systems to optimize the removal of toxins from the body.
Herxheimer reactions can be miserable, but we can make them more manageable.
We suggest these supportive therapies to help patients with some of the uncomfortable symptoms of bacterial die-off, blebbing and overwhelmed detox pathways.
While these therapies are supportive they are not curative on their own.
- Stay hydrated with lots of filtered water.
- Binders (Sun Chlorella, IV glutathione, IV choline, MicroChitisian)
- Infrared sauna
- Vibe plate
- Hyperbaric chamber set at 1.5 - 1.8 ATA
- Gentle massage or exercise
- Epsom salt bath
- Microchitisian for myalgias (muscle pain and soreness).
- Proteolytic enzymes
- Probiotic foods (24 hour yogurt, unpasteurized, refrigerated sauerkraut)
- Mental health counseling
- Scripture reading
- Acupuncture
- Strong, supportive community environment
- Whole foods, anti-inflammatory diet
See the “Lyme Treatment: Supportive Therapies” for more information.
FOLLOW-UP & ONGOING TREATMENT
It's not possible to predict the future but the great majority of my patients rate themselves better than 90% back to normal after initial treatment.
The average duration of pulsed treatment is 14 -18 months.
Many patients have recurrent symptoms between the first several pulses, which is to be expected. With continued pulses and finishing the whole treatment cycle, most patients can go off of the medications and be stable without them.
A small minority of patients have chronic relapsing symptoms after treatment. If your treatments are complete and you've gone off antibiotics but feel that symptoms are coming back, it's best to call the office and make an appointment for re-evaluation.
“Persister” is a term used for the bacteria that survive pulsed therapy by changing into a dormant, non-growing or slow-growing state making them highly resistant to medications. These survive until the environment is free from the threat and re-emerge to reproduce.
There is ongoing research to find better combinations for pulsed therapy medications and nutraceuticals to kill off persisters.
Our protocol of switching which medications and nutraceuticals are being used in predetermined intervals with breaks between rounds has been successful in shortening the total duration of treatment while increasing the success of eliminating the bacteria in active and persister forms.
CLINIC & MEDICATION INFORMATION
It is best to schedule your next follow-up appointment with the receptionist at the end of each appointment.
If you are on pulsed therapy, schedule your next appointment for the beginning of the break that occurs after the pulses you’ve just been given.
This will ensure you have enough time to procure any prescription medications and nutraceuticals before your next pulse should begin.
Yes, there is. If you do not cancel with at least 48 hours notice there will be a charge. Please make sure to call us with as much advance notice as you can if you cannot keep your scheduled appointment.
We will send prescriptions to your chosen pharmacy electronically after your appointment. Please give your pharmacy 24 hours to complete an order or refill request before checking in with them or calling us. If the pharmacy doesn’t have your order after 24 hours, leave a portal message and we will check into the issue.
Please leave a message at the office if you have not received a response in three days and we will get back to you as soon as possible.
Sometimes your medication will have a different name than what you are expecting. This can be due to brand name differences, manufacturer differences, or the substitution of a generic version of the medication. Your pharmacist can clear up any confusion if you have concerns.
We do not have the ability to test your tick, but you can send it to IgeneX Inc. to be tested. For a fee, they will test your tick for Lyme and/or 5 other possible infectious agents.
Please see their website for testing information: https://igenex.com/tick-test/