Current Treatment Protocol as of March 2012
For anyone interested, here is my current treatment protocol as of March, 2012. I am being treated by a Lyme-Literate Naturopathic Doctor (LLND). She treats Lyme with both pharmaceutical and herbal antibiotics. I opted for a gentler, herbal treatment to start. If necessary, I will do the pharmaceuticals. This is a long post, so bear with me.
I am using a comprehensive approach to overcome this illness:
- Kill off the infection
- Support the body’s detoxification pathways
- Desensitize the body from multiple “allergies” that developed as a result of the infection
- Physical and emotional release of trauma (both at the root of, and a result of chronic pain)
- Byron White formula: A-BAB, 7 drops 2x per day (an herbal antibiotic, specifically for Babesia). Previously on B.W. A-L Formula for three months. Beware: these can cause significant die-off.
- Lauricidin: 7 pellets before bed (generally antimicrobial, esp. antifungal, antiviral) Beware: can cause significant die-off.
- Garlic cloves: insert vaginally overnight for yeast flare. Don’t laugh – this is very effective.
- Fluconazole: for yeast flares
- Cal/Mag Butyrate: 4 capsules with lunch and dinner (helps intestinal repair, reduces food reactions, anti-candida)
- Interfase Plus (contains digestive enzymes and EDTA to break up biofilms) 2 capsules, 2x per day
- Digestive enzymes before meals
- Chlorella with every meal
- Vitamin C (sodium ascorbate) daily
- Meriva Curcumin (anti-inflammatory) daily
- 60+ oz filtered water daily
- Coffee enemas weekly. Don’t laugh – this is very effective. You want to use special coffee for this purpose: S.A. Wilson’s. More on this later.
- BioSet treatments (see below)
Vitamins and Minerals:
- Calcium/magnesium/zinc (1000/500/15mg) daily
- Vitamin D: 5,000 units per day
- B Vitamins: Folate, B6, B12 daily
- Bio-identical progesterone cream morning and evening 21 days per month (for PMS caused by low progesterone)
- Natural thyroid: 45mg every AM
- 5mg melatonin
- 200 mg L-theanine (supports Gaba)
- 2 capsules Kavinace (supports Gaba)
- BioSet (Bioenergetic Sensitivity and Enzyme Therapy): It integrates traditional Chinese medicine and acupressure together with contemporary approaches to applied immunology and nutrition. The BioSET System employs three basic treatments: organ-specific detoxification, enzyme therapy, and desensitization. I think of it as Biofeedback via the body’s energetic pathways. Also helps to open the detox pathways and prepare you for antimicrobial treatment. And you can continue to self-treat at home. I no longer suffer from food sensitivities! I will devote an entire page to this remarkable therapy soon.
- Psychotherapy with EFT (Emotional Freedom Technique, aka “Tapping”) and EMDR (Eye Movement Desensitization and Reprogramming). Excellent work for reprogramming the body after trauma. It is important to remember that trauma can cause chronic pain, but chronic pain can also cause trauma! This is the only psychotherapy that has ever been truly helpful to me. And you can continue to self-treat at home. I will write more on this treatment soon.
Diet: (mostly organic)
- I try to get nine cups of fruits and vegetables per day. Intensive nutrition is key to recovering from chronic illness of any kind. I am starting to juice to accomplish this.
- High quality proteins: grass fed meat, organic poultry, and fish
- Low grains
- Low sugar
- Low alcohol (one of my weaknesses!)
- Minimal dairy – eat goat or sheep cheese when possible
- Avoid processed “dead” food
- Avoid additives and preservatives
- Plenty of good fat: oils, nuts, seeds
- 3g high quality fish oil per day
Pharmaceuticals: (I rely on these less now)
- Tylenol for moderate pain
- Tramodol for intense pain
- Sumatriptan for severe headaches
- Ambien for insomnia (if natural supplements fail)
- Fluconazole for yeast flare-ups
- Xanax for anxiety/panic
Previous medicines/therapies: Alternative
- Removal of amalgam fillings in 2010. Replaced with composite or hypo-allergenic gold
- Intravenous chelation for heavy metals from 2010 to 2011 (could not feel the benefit, but was necessary in my opinion)
- 6 months of intense anti-fungal therapy in 2011 with fluconazole, Amphotericin-B, and Nystatin (helpful)
- Anti-fungal treatment with oral Nystatin 2008 – 2010 (helpful)
- Acupuncture (temporary pain relief only)
- Chiropractic (not helpful)
Previous medicines/therapies: Conventional
Before this, I tried numerous medications and treatments to prevent the pain. None of them worked. Here are the ones I remember:
- At least five different antidepressants
- Anti seizure (Topamax)
- At least two different anti-hypertensives (propranolol, etc…)
- Nerve pain meds (Neurontin, Lyrica)
- Anti-anxiety meds (Xanax)
- Physical therapy (not helpful)
- Psychotherapy (not helpful for pain, somewhat helpful for emotional problems)
- Arteminisin (per Dietrich Klinghardt protocol)
- Switch to other BW formulas to kill off co-infections
I am very pleased with my course of treatment in the last six months. My pain level is significantly lower! I also believe that the BioSet was a turning point for me. These treatments rid me of food sensitivities and vulvodynia pain. I will continue them as long as I can afford them. I hope viewers find this information useful.
This is a list of all the symptoms I experienced from 1998 to 2012. Some of these problems were consistent, some were sporadic. I will list them in chronological order as I experienced them.
*I placed an asterisk next to the symptoms that have abated with Lyme Disease treatment in the last six months.
- Migraine headaches (improving)
- Severe joint pain in knees and neck*
- Burning pain in neck, back, and shoulders*
- Tender points on body*
- Fatigue (improving)
- Irritable bowel*
- Vulvodynia (unexplained burning pain of vagina/vulva)*
- Hormonal imbalance – low progesterone and thyroid
- Depression (improving)
- Social anxiety (improving)
- Cognitive dysfunction*
- Memory problems (improving)
- Confusion/Indecisiveness (improving)
- Food sensitivities (causing headache and general malaise)*
- Chemical sensitivities (causing headache and general malaise)
- Chronic headaches – daily*
- Arthritis in feet and hands (improving)
- Pain in jaw, face, and teeth/trigeminal neuralgia
- Vertigo (improving)
- Dizziness (improving)
- Tinnitus (improving)
- Chronic chapped lips (an allergic response?)
- Light sensitivity*
- Heat sensitivity
- Exercise intolerance (improving)
Notice the similarity with the list published by the Townsend Letter in my last entry. No wonder some people (and a few physicians) thought I was a hypochondriac. Indeed, I was starting to think I was crazy. But I wasn’t. I just had a systemic bacterial infection that affected my brain, nervous system, muscles, and joints. And it took 13 years to get a proper diagnosis.
The anger rises up in me when I think about the ineptitude of such an expensive, modern medical system. At least fifteen different physicians of different disciplines were not able to help me. How is it that so many physicians were not able to think outside the box when faced with something unusual? And how hard did they really try to help me?
No wonder Lyme Disease is often called “The Great Imitator.” Check this out…
Signs and Symptoms of Infection
– copied from The Townsend Letter website: http://www.townsendletter.com/Jan2005/lyme0105.htm
The first recognizable symptom following a tick bite is the development of a rash at the site within 7 to 10 days. The rash expands with an area of central clearing. Other symptoms may include low-grade fever and/or headache. The rash and early symptoms clear within 3 to 4 weeks. Multiple secondary rashes may occur following this time period. Bouts of arthritis, usually involving large joints, especially the knee, are very common. Arthritis attacks usually resolve within 3 to 4 years with or without treatment.
Early neurological complications include Bell’s palsy, meningitis and encephalitis. Sub-acute symptoms may include cognitive deficits, mood and sleep disturbances, persisting for more than 10 years. One of the most common symptoms is intense fatigue. Additional symptoms may include memory loss, poor coordination, slurred speech, poor concentration, unusual depression, burning, stabbing pain, tremors, anxiety, swollen glands and tinnitus.
Some Lyme Disease Signs and Symptoms
- Intense Fatigue
- Memory Loss
- Burning/Stabbing Pain
- Joint Pain/Swelling/Stiffness
- Shortness of Breath
- Poor Coordination
- Slurred Speech
- Swollen Glands
- Chills and/or Fever
- Muscle Cramps
- Sudden Mood Swings
- Poor Concentration
- Light Sensitivity
- Unusual Depression
Most Common Diseases Associated with Lyme
- Alzheimer’s Disease
- Polymyalgia rheumatica
- Reflex sympathetic dystrophy
- Bell’s Palsy
- Rheumatoid Arthritis
- Chronic Fatigue Syndrome (CFS)
- Irritable Bowel Syndrome
- Multiple Sclerosis
- Parkinson’s Disease
- Autoimmune Disorders
- Middle Ear Pressure
- Rheumatoid Arthritis
Ack! No wonder this disease is so hard to diagnose. Over the last 14 years I have had a number of the symptoms listed above. I started thinking I was crazy. But I wasn’t.
Two words of advice for anyone else suffering from multiple symptoms such as these: get tested. And be sure to get tested by a doc who knows Lyme Disease well.
I assume most people who visit this blog are either Lyme sufferers or a friend or relative of someone who is. For those new to this disease, I will provide a brief overview.
What is Lyme Disease?
Lyme disease is an inflammatory disease caused by the bacterium Borrelia burgdorferi (Bb) and is transmitted to humans through the bite of infected ticks. Typical symptoms include fever, headache, fatigue, and a characteristic skin rash called erythema migrans. If left untreated, infection can spread to joints, the heart, and the nervous system (Centers for Disease Control, 2012).
If discovered early, the disease can often be treated with a few weeks of antibiotics. Unfortunately, the disease is frequently undiagnosed. Patients who go undiagnosed for months or years can develop Chronic Lyme Disease and face a much more difficult recovery with multiple antibiotics and other treatments. Chronic or late-stage Lyme is a controversial topic. Many physicians do not believe that it exists, compounding the problem of diagnosis.
Other facts about Lyme Disease
- Lyme Disease is prevalent across the United States and throughout the world.
- Fewer than 50% of patients actually remember a tick bite.
- The Centers for Disease Control (CDC) in Atlanta, Georgia, reports that “there is considerable under-reporting” of Lyme disease, maintaining that the actual infection rate may be 1.8 million, 10 times higher than the 180,000 cases currently reported.
- Of patients with acute culture-proven Lyme disease, 20–30% remain seronegative on serial Western Blot sampling (International Lyme And Associated Diseases Society, 2012).
- The disease commonly has multiple co-infections, including, Babesia, Anaplasma, Ehrlichia and Bartonella.
- Borrelia burgdorferi is a spiral shaped bacterium called a spirochete, discovered by Dr. Willy Burgdorfer in 1982. Syphillus is another spirochete bacterium related to Bb.
- Like syphilis in the 19th century, Lyme disease has been called the great imitator and should be considered in the differential diagnosis of rheumatologic and neurologic conditions, as well as chronic fatigue syndrome, fibromyalgia, somatization disorder and any difficult-to-diagnose multi-system illness (International Lyme And Associated Diseases Society, 2012).
Hello to all.
I was diagnosed with Lyme Disease in September of 2011 after suffering from 13 years of debilitating chronic pain and fatigue. I was frightened and upset by my diagnosis at first, but soon realized that this would finally lead me down the path of recovery. One must know their enemy to win the battle! And I felt immense relief and justification that I AM NOT CRAZY! This is not all in my head. I am actually sick with a verifiable disease, not “just depressed” or otherwise mentally unsound or stressed. And it’s not my fault that I have this.
Thank goodness I found a physician who believed me and knew to test me for Lyme. I expect my recovery will take months to years, but it feels good to be on the right path.
More to come soon.