Many of you have emailed asking how I have been treating my Lyme disease. Lyme is the fastest growing infectious disease in the U.S. and most doctors do not diagnose or treat it properly. If you are not suffering from, or interested in Lyme please skip this blog but pass it on to whomever may be suffering. I hope this will help anyone struggling with this illness.
I am not a Lyme expert, but I found doctors who are and I am doing really well. Lyme disease is curable. Here is what has been working for me.
- Testing for Coinfections. Most people with Lyme also have other infections, called co-infections. Some people never fully recover from Lyme even after their initial infection is succesfully treated because they have untreated/undiagnosed coinfections. One coinfection (that I was diagnosed with) is Babesia. Babesiosis is protozoal infection similar to Malaria that infects the brain. The only laboratory that found my Babesiosis was Igenex Labs (listed in my book). Some say that “everyone tests positive at Igenex.” This is not so. I have tested many chronic fatigue patients over the years for Lyme with Igenex and many test negative. It is important to understand that negative tests for Lyme or co-infections is not always accurate. There are many reasons for this. In the case of Lyme, the infection could be in a form that is invisible to the immune system (L form or cysts, see below). False negative tests can occur if a particular bacterial strain was not tested or if a weakened immune system is unable to form an antibody response to the infection. Symptoms are the most important way to determine what co-infections are present. Some infections are not obvious initially, but as treatment progresses, symptoms change, and coinfections become more obvious. As I complete my Babesial treatments I now suspect that I have Bartonella. My Bartonella tests thus far are negative but as symptoms emerge and persist (neuralgia, persisting fatigue, nausea/malaise), I suspect this coinfection and plan to treat for it. I am also doing further testing for it, (Endothelial Cell Growth Factor Test).
- Treating Coinfections. My Babesisos was treated with Mepron, Azithromycin and herbs (below). You must treat Babesisos for at least 5 months- if your doctor says otherwise get another opinion. It must be treated for the full life of a red blood cell (4 months) otherwise the infection will recur. Studies have shown that treatments lasting 5 months had less failures. After 3 to 4 months headaches, and noise/light sensitivity, chills and sweats improved. Using a high dose homeopathic (LM or Q dosing of Nux Vomica) with a skilled homeopath finally got rid of my headaches. I would not recommend doing a homeopathic treatment early on as homeopathy can flare a symptom before it improves it, and that can be confusing. Make sure your homeopath is very experienced.
- Antibiotics. I used Doxyclycline initially for Lyme, which is a great treatment, but I became very depressed on this. Because of mood problems my Doxycycline was switched to Omnicef (300 mg twice daily) and after 1 month, Probencid was added to further increase Omnicef levels. Antibiotics drive the Lyme infection from the blood into the tissues, where it persists in a cyst or L form. These forms are not detected by the immune system, so blood tests may be negative, although the infection remains in the tissues. For this reason throughout my treatment I have used Una de Gato (Cat’s Claw) because it treats the cyst/L forms. Flagyl also treats cysts, so I currently “pulse” this in every 3 weeks for 2 weeks. In addition, I use two herbs, Artemesin (initially I used the less potent Artemesia) and Enula, (from Nutramedix), to treat Babesia and support immune function. Herbal remedies cause die-off symptoms similar to antibiotics (below) so, if you add these in, do so gradually and of course under your doctor’s supervision.
- Die-off. As infections are treated, the body reacts to the dead bacteria/protozoa and the symptoms from this are called “die-off.” Die-off is a bitch. Everyone experiences it differently, but die-off makes the treatment of this disease the most difficult part of this disease. My die-off symptoms were depression, severe unrelenting headaches, numbness, fatigue, brain-fog (literally feeling as if your head is stuffed with cotton), confusion, poor name recall, memory loss, executive function problems (missed appointments, unable to add columns of numbers, forgetting to pick up kids, difficulty organizing/prioritizing/sometimes getting lost in the neighborhood, vertigo, and ADD with difficulty keeping organized or on task), soaking sweats,freezing cold, and joint pains. Cholestyramine (see below) is a prescription medication that helped reduce my die-off symptoms. Supplements that also helped were Pectasol from Douglas (a natural form of cholestyramine – I use both), and Pinella extract (an herbal “brain clearing extract” from Nutramedix). Doing less, asking for help, asking for reminders from friends and family, keeping lists and pre-planning my days (best done the night before so that I could problem shoot and ask for help with driving, shopping, etc) were key.
- Mood. Mood symptoms were perhaps the worst symptom for me. Many people experience depression from long term tetracycline antibiotics (Doxycycline, Minocycline, Biaxin). Switching to Omnicef helped my mood. Lithium Orotate (4.8 mg) 2 pills three times/day (this is not the same as lithium carbonate used in bipolar illness) was also helpful. During a workshop with Dr Christiane Northrup I was introduced to a world wide healing practice, Bruno Groening Circle of friends, which involves meditation to music (downloaded from the web). This practice has been dramatically helpful both physically and mentally.
- Sleep. Adequate rest is critical to treat and recover from Lyme. Unfortunately, die-off symptoms and neurotoxins can interfere with sleep. I found using L-Tryptophan 500mg (4 capsules on empty stomach) one hour before bed and 9 to 15 mg melatonin worked very well. (Yes, this is a high melatonin dose, but melatonin is a powerful brain antioxidant which helps protect the brain from neurotoxins) Regular rest and naps are essential to recover.
- Cholestyramine. This prescription medication is a resin that is normally used to bind fat. Fortunately for Lyme sufferers, it also binds neurotoxins and can be very helpful to limit neurologic symptoms. There are a few things to know about it. Most doctors prescribe it in packets or yellow powder that contain dyes and substitute sugars not well tolerated by Lyme patients. As a result, many patients give up on it, which is a shame as I found this remedy very helpful to reduce die-off symptoms. Be sure to ask for Generic cholestyramine in a tub. It is a white, pleasant tasting powder. Two pharmacists had trouble finding this for me- if you have trouble, call Pierce Apothecary (617-566-4080) and they can order it for you with your doctor’s prescription. To avoid constipation while using it, take 4 to 6 tablespoons of ground flax seeds. Cholestyramine must be taken between meals and at least 3 hrs away from Mepron, because it will absorb your medications and food. Good times to take this is during the night if you wake up, and late afternoon 2-3 hours before dinner. It can deplete certain minerals so I now take iodine, potassium , vitamin K2 and vitamin D3 in addition to magnesium glycinate and calcium aspartate.