Lyme disease seems to becoming more and more prevalent and its pretty scary.
What makes things even scarier is that the best doctors in the field disagree on the even most basic things about Lyme disease like correct diagnosis and treatment.
Here are some examples of conflicting statements you may have heard about Lyme:
You can have a negative lyme test but still have a Lyme infection.
You can have a positive lyme test and not have Lyme infection.
Antibiotics for ten days is sufficient to eradicate Lyme.
Antibiotics are only sufficient if you take them for three weeks.
Antibiotics may need to be taken for months.
Chronic lyme means chronic infection.
Chronic lyme does not exist.
It is pretty noisy out there in regard to the Lyme conversation and quite difficult for patients to get clear information. So let’s see if we can make things a little less opaque by examining some of the above statements about Lyme Disease individually. Once we have a better understanding of the disease we should be able understand treatment better.
You can have a negative Lyme test but still have Lyme Disease.
In 1976 Dr Willy Burgdorfer identified the spirochete bacterium that causes Lyme: Borrelia Burgdorferi (named for him). When Borrelia Burgdorferi enters the bloodstream it changes markers on its exterior to avoid detection by the immune system. In addition it moves quickly from the blood and into tissue making it very hard to detect by bloodwork especially in the early stages. To make things even more complicated Lyme tests do not look for the actual Borrelia Burgdorferi spirochete in the blood. The tests look for the antibodies that the immune system produces in response to the Borrelia Burgdorferi bacteria. So if the immune system has not yet detected the bacterium (which can take a few weeks) the antibodies will not be present in the test even though infection may be present. So yes, you can have Lyme disease and still have a negative test result in the early stages.
You can test positive for Lyme disease but not have a Lyme infection.
Once the immune system has made antibodies to Lyme those antibodies can stick around in the bloodstream for years. Because Lyme diagnostic tests are looking for the antibodies to lyme and not the Borrelia Burgdorferi bacteria itself you can have eradicated the disease but still have a positive test result.
Antibiotics for 10 days is a sufficient treatment for early stage Lyme.
Yes and No.
in 2006 the standard treatment of Lyme Disease went from three weeks of doxycycline to ten days. It does seem that for many patients if Lyme is diagnosed early ten days of doxycycline is a sufficient treatment and the symptoms of Lyme do not return. Unfortunately for up to a third of patients this is not the case and symptoms return a few months or even years later. In some patients symptoms do not go away at all even after weeks of antibiotics. There are multiple and sometimes seeming conflicting explanations for this. One point of view is that Lyme causes an ongoing low grade inflammatory response that can show up as joint pain, arthritis, or look like an autoimmune disease like rheumatoid arthritis or chronic fatigue. Also, the Borrelia Burgdorferi bacterium is known to come in different strains which is why lyme can look so different from patient-to-patient and have a different disease progression. Perhaps most importantly Doxycycline has been shown to be effective against the spirochetal form of Borrelia Burgdorferi but not when Borrelia Burgdorferi is in the more dormant round body form or biofilm form (which are thought to be the sources of Chronic Lyme Disease which we will discuss below).
You will see a bullseye rash in the early stage of Lyme.
True and False
The earliest signs of infection are a bulls eye rash and flu like symptoms (fever, fatigue). Unfortunately up to 30% to 50% of patients do not report finding a bullseye rash.
Chronic Lyme does not exist.
When a patient has been treated with antibiotics for Lyme but their infection symptoms persist they have ‘chronic Lyme’ or Post Treatment Lyme Disease Syndrome PTLDS. Chronic Lyme/PTLDS is sometimes (controversially) treated with antibiotic protocols that can go on for months or years. It is probably the most hotly debated aspect of Lyme disease. Dr. Allen Steere, who discovered Lyme in 1976 and is a known authority on Lyme working in Mass General, has stated emphatically that Chronic Lyme does not exist. Nevertheless, PTLDS is now recognized by the CDC (although not the Infectious Disease Society of America).
So what is PTLDS or Chronic Lyme?
One theory is that Lyme can linger in a dormant form or ‘round body’ even after antibiotic treatment. This kind of pathogen is known as “persister bacteria” similar to some difficult to treat staph infections. Persister bacteria can enter a dormant state allowing them to elude antibiotics like doxycycline. Doxycycline inhibits the replication of bacteria but doesn’t kill them directly. So if the bacteria is dormant and not replicating it will not be affected by a course of antibiotics. The bacteria can later break dormancy and the patient is reinfected. It is also thought that in some patients doxycycline can actually cause Borrelia Burgdorferi to transform from active spirochete (which doxycycline can eliminate) into the dormant round body form (which it cannot).
Another theory is that Chronic Lyme is an inflammatory/autoimmune response in the body triggered by the Lyme disease bacteria. So not an infection but an auto immune response to the infection. The inflammatory response lingers even though the bacteria may have been eradicated from the body and there is no longer an active infection. In these cases taking natural anti-inflammatory supplements like Theracurmin (the more bio-available form of curcumin) and omega oils can help. Read on in our herbs and supplements section to learn more.
The most standard test is the Enzyme Linked Immunosorbent Assay “ELISA”. This is what your primary care physician will give you if you have been bitten by a tick or have Lyme symptoms. It looks for antibodies to the Lyme bacteria. Unfortunately because of all the reasons we discussed on the general lyme discussion page, ELISA may be falsely negative up to 50% of the time.
The second test is the Western Blot. Many primary care givers will not run this test if the ELISA test came back negative. If your doctor will not give you a Western Blot, push the point, get the test or get another doctor.
Western Blot looks at reactivity against a panel of 10 different proteins found on the Lyme bacteria. CDC standard diagnostic criteria to have a positive Western Blot for Lyme 5 of the 10 bands must be positive. At 80% accuracy Western Blot is considered the most reliable test currently available but that still means 20 out of 100 patients with Lyme disease will have false negatives. Because of this it is good to get your test results and look at the 5 very specific bands on the Western Blot hat are indicative of Lyme disease: band numbers 23, 31, 34, 39 and 93. If any of these bands are positive and you are experiencing symptoms of Lyme disease treatment may be warranted.
If you find you have been bitten by a tick in a Lyme endemic area you may want to consider taking antibiotics right away as testing immediately will not tell you whether you have been infected. Another route would be to use the herbs and supplements found on the lyme recovery page post tick bite as well as antibiotics or instead of antibiotics.
If you test positive for Lyme do not delay in treatment. The three first line oral antibiotics for Lyme are doxycycline (mondox, doryx, vibramycin, oracea),amoxicillin (amoxil), and cefuroxime (ceftin, zinacef). Most likely you will be given the standard treatment which is doxycycline for ten days. You may want to ask for three weeks to be safe.
If you think you have chronic Lyme and have already taken doxycycline consider asking for doxycycline, ceftriaxone, and daptomycin simultaneously. A study just released by Johns Hopkins in 2019 found this three antibiotic cocktail clears “persister” Lyme bacteria in mice.
Generally speaking, find a practitioner that is skilled in treating infectious diseases or a Lyme specialist. Make sure your doctor is open minded and is not going to stay only with standardized protocols. Be willing to approach the disease from many different directions: antibiotics, the triple antibiotic cocktail, anti-rheumatic drugs, and natural anti inflammatories. If you are going to work with an alternative health care practitioner (please do!) find someone who understands natural anti-inflammatory herbs, foods and supplements.
Before going outside treat your clothing and shoes with Permatherin a natural tick repellant. It actually works and one application lasts for several washes.
Wear socks and long pants when out in tick country and tuck your pants into the socks.
Wear white or light colored clothing to better see adult ticks (unfortunately the nymph stage tick is nearly invisible and can still cause infection).
Use a tick comb on yourself and on pets before you return inside.
Shower after working outside. Ticks do not attach for a while so water will wash them right down the drain. This is especially helpful with smaller less visible ticks.
Make sure you do not have mice. Mice carry ticks right into your home from outside.
Ticks do not actually travel far on their own. Leave shoes, socks or other potentially tick infested gear in your garage/mud room or put the clothes directly into a bag or washing machine.
Get Guinee Fowl if you live in the country. They are Tick Terminators and word in the forest is that three per acre will keep you tick free.
Keep your immune system in tip top shape. Consider taking astragalus, reishi mushrooms and other immune boosters daily especially if you live in Lyme endemic areas.
Please be careful when using any of these natural remedies. Do not use if you are pregnant or nursing. Consult a skilled herbalist if you are taking any other medications like statins or beta blockers. The herbs and supplements below are suggestions and guides. There are many wonderful books on herbal remedies and Lyme recovery. Probably the most comprehensive is Healing Lyme by Stephen Buhner. If at all possible you should see a professional (come see us!) when using these formulas and supplements.
Regenerative Acupuncture Lyme Recovery Formula
Anti spirochetal, cytokine remodulation, anti inflammatory, boosts immune function, helpful with neuroborrelosis.
Hu Zhang (Polygoni Cuspidati), Huang Qi (Astragalus), Huang Qin (Scutellariae Radix), Dong Chong Xia Cao (Cordyceps), Qing Hao (Artemisiae), Dan Shen (Salviae Miltorrhizae), Gou Teng (Uncariae Ramulus), Gan Cao (Licorice), Chen Pi (Citrus Peel).
Chuan Xin Lian (andrographitis paniculatae)
The strongest spirochetal. Be careful, very strong herb.
Start with a low dose and increase slowly. Dosage depends on brand and delivery method (tincture or powder).
Banderol and Samento
Anti Burgdorferi Borrelia in all forms especially round form and bio film (chronic lyme). Protects and regenerates neural structures in the brain. Helpful with neuro Lyme.
Start 1 drop two times a day increasing to 30 drops
Start 1 drop 2 x day and increase up to 30 drops 2 x day
Restores immune function protects/regenerates neural structures in the brain
Adaptogen similar to ginseng restores immune function
Helps with energy. Be very careful using with statins or beta blockers.
Up to 600 2x day
Acetyl L Carnitine
Neuropathy, memory loss, fatigue
1000 per day up to 2000 divided doses
100 per day peripheral neuropathy
1000 per day peripheral neuropathy
200 2/3 times a day
1000 per day
2000 per day
As directed on the bottle as a natural anti inflammatory.
2000 IU per day of omega 3 oil is considered the anti inflammatory dose
Can help with peripheral neuropathy, fatigue, anxiety, insomnia, joint pain and many many other symptoms of Lyme.