The second-most disabling symptom experienced by Lyme patients is pain. Lyme patients of all kinds of pain. Frequent the pain confuses physicians because it is migratory and transient, here one day and somewhere else the next. This is paradigm busting. Lyme patient may describe the pain in ways which sounds strange. Pain is subjective and very difficult to describe. Chronic pain is extraordinarily common in our country. I was surprised to read that is estimated that 40% of the entire country suffers with some form of chronic pain. Interestingly, the incidence of chronic pain is extremely variable in other countries ranging from 10% to 50%. Pain, not unlike fatigue, is a brain disorder. MRI changes with a loss of gray matter are seen patients with chronic pain. These changes reverse when the pain resolves. In standard medical literature it is said that chronic pain rarely resolves. That has not been my experience.
The question is: why does Lyme hurt.
For a start, Lyme spirochetes have a unique ability to infect nearly every tissue in the body. The germ is poly-tropic (can go anywhere) and patients are pan-symptomatic (experience multiple, seemingly unrelated symptoms found in many publications).
Pain comes from skin, peripheral nerves, central nerves, viscera and organs, tendons, ligaments, muscles, joints, head and simply from the brain itself. Generally the cause is inflammation, directly from invasion of the involved tissue or from an autoimmune processes. Pain is frequently associated with structural/physical damage to the involved tissue. The damage may only be seen with nuanced studies of which the general medical community is ill informed.
Traditionally, Lyme has been seen in association with joint pain and arthritis, meningitis and carditis and several others. Mainstream medicine has failed to recognize the connection between numerous chronic pain syndromes and Lyme disease. Certain coinfection syndromes are associated with specific pain. For example Bartonella as well known to cause heel and shin pain. This will but not be my focus here.
Patient do have variable tolerance to pain for variety of reasons. This will not be my focus as well.
Physicians as a whole are poorly informed about pain and chronic pain and tend to be dismissive of patients complaining of pain. When brought up in the context of Lyme disease pain complaints are received with even less credence.
Many Lyme patients are diagnosed with fibromyalgia. There has been a long-standing debate amongst physicians. Is "fibro" a real disease or simply a garbage can diagnosis? The disease is real. Medical research shows there are path-anatomical changes in the muscles and small nerve fibers in these patients. The physical examination is patients is clearly abnormal. I consider fibromyalgia a syndrome, not a disease. Lyme and associated infections may be the root cause in many cases.
Chronic pain patients are frequently told they look fine, not showing any signs of pain. This is how chronic pain patients appear. Pain which is unrelenting, day in and day out is torturous and unbearable and yet patients may look "fine."
Physicians should give their patients the benefit of the doubt and assume their patients are telling the truth unless proven otherwise; it is only a small percentage patients who inappropriately seek drugs. A pain management specialist told me that typically 20% of patients seen in his practice are drug seekers not suffering with pain and that this breakdown is typical for other pain practices. Why then, do physicians think the 80% of patients suffering with pain should be made to suffer an unbearable fate because of the 20%?
Please treat your pain. Chronic pain has adverse effects on sleep, mood, neuroendocrine function, functional capacity and impedes the overall healing process. Some Lyme patients live in chronic pain refusing to take opioids because they have the incorrect notion that use of opioids will suppress immune function and their ability to heal. This is not true.
Let's talk about headaches. Neurologist infuriate me. They are married to the notion that headaches respond to standard drugs like: Imitrex and Topomax; I’m sorry, but the brain/head forgot to read the textbook. Neurologist and headache specialists are obsessed with the idea that migraine/chronic headache patients will respond to their standard drugs. Narcotics are not prescribed because the patient will become addicted or abuse the drugs. Desperate patients go to the emergency room are almost universally looked at suspiciously. These poor souls are seeking a modicum of relief from pain that makes the sufferer want to tear off his/her head or commit suicide. This no-narcotic sort of thinking is outdated and criminal as far as I’m concerned. In the early 80s I was taught that Narcotics were only to be given to patients with terminal cancer because of addiction. In the 90s the pendulum swung the other way. Physicians were instructed to compassionately treat pain; clinical studies showed that few patients developed addiction. The pendulum has swung back the other way because the DEA is obsessed with OxyContin abuse and able to look at the big picture. This obsession has led to a sudden increase in deaths from relatively inexpensive, apparently no longer stigmatized heroin.
New onset daily migraines and new onset chronic daily headaches are new phenomena. Lyme, Babesia and Bartonella are frequent contributors. Any treatment that works is OK. Therapies such as chiropractic manipulation, botox, HBOT, and possibly oxytocin can be tried. Ultimately, opioids may be the only thing that works. Patients should be their own advocates and do whatever is necessary to attain a quality of life higher than zero.If their pain doctor does not get it find another who will. They exist.
Lyme arthritis can be challenging. Patient seeking my attention usually suffer with long-standing, intractable joint pain. Many of these patients only improve with very aggressive therapy. Borrelia spirochetes are anaerobic and drill shaped; the bacteria utilize these attributes to invade deeply into synovial tissues and cartilage. Joint pain can be the only complaint making these patients different from typical, poly-symptomatic patients, and therefore, physicians, including like-minded colleagues, avoid intravenous therapies. However, intravenous antibiotics may be the only treatment that works. Long courses sometimes five months or more of intravenous antibiotic therapy is required. Oral drugs lack the power to penetrate cartilage which is largely avascular. When hard earned remissions occur, maintenance oral therapies are necessary. I have found that the combination of doxycycline and Tindamax is usually effective. I recently saw a refugee from a rheumatologist who was misdiagnosed and pumped her with a panoply of biological agents which caused a severe exacerbation of joint pain. Lyme arthritis may have different faces at times appearing much like rheumatoid arthritis and other forms of arthritis. Plaquenil and sulfasalazine, anti-inflammatory, immune modulating drugs may occasionally be helpful and are safe to use. Steroids should generally be avoided.
Lyme arthritis can look like and act like osteoarthritis. When all the cartilage has been chomped through by spirochetes, bone on bone is all that is left. Surgery may be needed. Hyperbaric oxygen therapy can work wonderfully for some patients. Patients may try low dose naltrexone but in my experiences it rarely works for chronic pain. Sometimes, drugs like Cymbalta and Lyrica are effective. Medical marijuana, available in some jurisdictions, is a new player. For some it is very effective. Alternatively, synthetic THC, Marinol can be and work well. I saw patient today suffer with Lyme arthritis was has been taking liposomal doxycycline. He feels it has been somewhat effective. In my clinical practice I have not seen much difference between standard doxycycline and liposomal doxycycline. In theory, liposomes avoid destruction by gastric secretions, have better absorption and have higher bioavailability. In addition, the chemistry of liposomes allows them to bind directly with the cell wall or membrane of bacteria significantly enhancing the efficacy of the drug.
If narcotics are the only thing that works, take them.
Neuropathy pain is extremely common amongst Lyme patients. I have found the vast majority of my patients suffering with chronic Lyme show some evidence of peripheral neuropathy, damage to small sensory and motor nerves. In most cases the EMG/NCV is negative. Frequently, small fiber neuropathy may be demonstrated from skin/sweat gland biopsies. A physical examination can be revealing, especially testing sensation in the lower extremities with a tuning fork. Nerve pain can be excrutiating. Patients with severe neuropathy syndromes can respond dramatically with the use of IViG.
Different types of pain of various causes may respond better to one therapy or another. For example, a nonsteroidal anti-inflammatory drug may be helpful for joint pain but provide no relief for nerve pain. The opposite is true for drugs like, Elavil, Lyrica or Neurontin. Ultimately, every effort should be made to control pain using appropriate medications and ancillary therapies. For the vast majority patients pain can be controlled and should be controlled. This is a necessary part of treatment.