My patient today is a 53-year-old woman who I have known for several years. She has been disabled with Lyme and tickborne disease for the last decade and a half. When she came to my office a few years ago, things had taken a turn for the worse. When she came to my office for the first time she had a clear agenda. She wanted IV antibiotics, the only thing that works she said.Her saga dates back to 1995, in Silver Spring, Maryland. She remembers finding a tiny tick attached to her abdominal wall. She recalls that 2 weeks later a large circular rash appeared on her abdominal wall. She recalls being barraged with symptoms soon thereafter. She experienced fevers and had trouble walking and talking. Her doctor at the time ordered an array of tests, which were negative and the physician offered no diagnosis or treatment. An ID doctor offered nothing. A neurologist ruled out MS. Other doctors suggested her symptoms were psychosomatic and she was left to suffer, without answers or help.
After a few years, she developed burning sensations, tremors, leg pain, weakness, muscle twitching and jerking and progressive joint pain. She developed migratory pains in her shoulders, knees, wrists, ankles, fingers and toes. Brain symptoms were insidious. Her thinking felt clouded. She starting getting lost. She experienced disoriented episodic confusion. Other strange neurological symptoms seemed to mimic strokes or seizures she thought.
Finally, in 1998, she diagnosed herself. She convinced an ID doctor to treat her. With 6 weeks of IV antibiotics and she began to improve. They were taken away and she crashed. She garnered a glimmer of hope. She began looking for help elsewhere and saw many doctors. She ultimately found a New Jersey physician who aggressively treated her with IV antibiotics for 12 months. She regained a quality of life, did OK for a while – a couple of years. Gradually symptoms reappeared. She called the same doctor only to discover she was no longer in business, courtesy of the State Medical Board.She found other doctors who were loath to prescribe IVs. Lot of doctors, lots of oral meds. Her stomach was a mess and she was no better. She recalls that she tested positive for Lyme, Babesia and RMSF. She remembered a yellow paint-like medicine which made her sick and no better.
When we first met, she was desperate for help. Mostly bedridden, getting out of bed and getting dressed was a heroic action.
A partial list of symptoms included: exhaustion, fevers, chills, night sweats, insomnia, double vision, flashing lights, blurred vision, tinnitus, trouble speaking, trouble swallowing, swollen lymph nodes, rapid and irregular heartbeats, abdominal and pelvic pain, generalized muscle and joint pain (severe), back pain, stiffness, headache, migraine, vertigo, numbness and tingling, weakness, loss of balance, trouble walking with falls, brain fog, forgetfulness, confusion, disorientation, depression, anxiety and panic attacks.
She knew what she wanted: IV antibiotics. I wasn’t a hard sell.
Laboratory testing was positive for Bartonella antibodies. A Lyme Western Blot at LabCorp was negative across the board. A Stony Brook Western Blot revealed a single nonspecific IgG band (64) and 9 IgM bands: 18,25,28,31,37,41,58,64,93.I found other abnormal laboratory values from the start. She had a very low B12 level. A parietal cell antibody test was positive. Folic acid and vitamin D were also very low.
IV therapy didn’t work. First there was a DVT and we had to pull the line. We tried therapy through a peripheral line and she had an adverse reaction to Rocephin.She became discouraged and fell off the radar.
Doing poorly, after some months, she came back to try something else: intramuscular penicillin. This has worked beautifully – as well as Rocephin worked, she states. All major symptoms are melting away and after a couple of months she is functioning quite well. I give her the shots. We warm up the syringe to room temperature, and slowly inject, (deep IM, lateral aspect of iliac crest)– based on tolerance. The injection site is “rubbed in.” She tells me the pain is relatively minor and doable, especially once weekly.
Bicillin LA is used. It is a depot form of the drug and stays in the tissues for 2-4 weeks. I understand some patients are injecting 1.2 million units 2-3X per week. I have found that 2.4 million units weekly works fine. The larger volume of the higher dose is tolerated when injected slowly.
She is also treated with complementary oral drugs for Lyme and Babesia. We have found effective options which she tolerates. She receives various supportive therapies. And B12 injections are key.
I don’t know why the pernicious anemia (PA) diagnosis had been missed. B12 deficiency can mimic many Lyme symptoms and B12 levels should routinely be checked. PA is an autoimmune disorder. Autoimmune issues are prevalent amongst Lyme patients, for example, thyroid disorders. I can’t say I routinely see cases of PA, but I think the prevalence in my patient population is greater than the general population which is around 0.1%.Bicillin LA is very expensive and insurance doesn’t cover it. I checked on goodrx.com. A 10 pack goes for 2,700 dollars. The monthly out of packet cost is about 1,000 dollars which isn’t horrible for a Lyme treatment. A brief google search finds several outfits advertising a fraction of the cost.
The history that 12 months of IV Rocephin in the past imparted temporary relief would seem to augur poorly for the future. But I optimistic that a better understanding of cocktail therapy and coinfection therapy is changing this trajectory.
An aside – let me digress.Like many of the sickest, her positive Western Blots show a predominance of IgM responses. In his research, Dr. Aucott incidentally discovered that about 20-25% of the populace, genetically, appears to be incapable of mounting an IgG response and may show only a weak IgM response. This finding was predictive of a poor long term disease. ID doctors still call IgM only “false positive” backed by the IDSA/CDC emphatically insisting that all chronic Lyme patients have the touted 5/10 IgG responses.
“You are entitled to your own opinion, but not your own facts.” The erroneous version of reality stems from peer reviewed literature. Of course, it does. Virtually all academic peer reviewed studies use the 5/10 IgG criteria for acceptance into clinical studies. The conclusion that all chronic Lyme patients have these findings is silly. These criteria are used for study inclusion only. There is no clear academic peer reviewed literature that supports the notion that the criteria can be reliably used for diagnosis. Opinion papers, not research papers make this claim frequently, by incorrectly citing literature that uses the study inclusion criteria. The first of 4 off cited academic, NIH sponsored studies (Krupp), specifically states that he included seronegative patients in his study.The incorrect syllogistic reasoning used by the experts goes something like this: In Lyme studies all chronic Lyme patients have CDC criteria: patients have chronic Lyme; therefore, all chronic Lyme patients must have positive CDC findings. And “experts” say it’s true – by fiat.
My 16-year-old daughter sees the erroneous logic and conclusion in about 30 seconds.Everything about this case is all too familiar and horrible. Thankfully, this survivor of an odyssey of insanity and cruelty is headed for happier times.