The pain continued with no significant improvement over the next four weeks. I was referred to a neurologist, and had EMG and nerve conduction studies. Those were normal. Serologic tests for Lyme antibodies were negative, as they always are early in the course of the infection. I took the doxycycline for 28 days with no noticeable improvement in the pain. Additional parts of my body hurt, with neck stiffness and bilateral shoulder and biceps pain, and skin tenderness over the upper arms.
How bad is the pain? Patient reported pain levels depend on individual patient experience. I had 50% body area deep second degree burns at around age 5. that was the worst pain I had ever had. Then I had the first dressing change. That was the worst pain I ever had. Then the second dressing change. That one was as bad as the first one plus the anticipation of pain, making it much worse. Since then I have had five back operations, dental abscess with trigeminal neuralgia, and two cancer operations. I would rank the Lyme Disease pain at around 7 out of 10 for the most part. Anyone who hasn't had much severe pain in their life is going to think it's the end of the world.
What can be done for the pain? First off, the doctors may not offer a great deal of help. They may not even believe you have a problem, since the tests are negative in the early stages. Ibuprofen or other NSAIDs and acetaminophen in maximum safe doses (read labels) are helpful. If your doctor will prescribe it, gabapentin will help with fhe neuropathic pain. That is the severe burning pain associated with skin tenderness, often in a nerve distribution. It doesn't seem to help as much with the muscle and joint pain, but those are helped by warm baths and
I don't know for sure whether rest or exercise is best, but I can't do my usual vigorous exercise routine because it is too painful, especially in fhe shoulders. I fell that pushing the limits a little is going to minimize the devastation of the illness, so I will do what I feel I can. I think stretching to maintain joint range of motion is very important, but the pain limits that. I can barely put my socks on and take them off. All activities of daily living are made difficult by this disease.
How long does it last? My reading leads me to believe that early treatment can result in relief within a few weeks, but symptoms may persist for months or more. Late diagnosis and treatment may leave permanent damage, so early antibiotic treatment is essential. I started treatment within days of the onset of symptoms, and do not sense any improvement at 36 days since beginning treatment.
Clearly, you need to avoid this illness! The deer ticks that spread this infection have a large geographical distribution and seem to be spreading further. If you live in or visit an area where they are prevalent you should take precautions whenever you are out and about. Avoid tall grass and weeds. Treat outdoor clothing, especially socks, with 5% pyrethrin. Use Deet or other effective sprays on skin and clothing. Check for ticks daily. Be aware that the nymph stage of the deer tick can give you the disease, and it is scarcely bigger than the period at the end of this sentence until it has fed.
This is not a complete review of Lyme, really just an introduction, and does not constitute medical advice per se.
