Friday, January 26, 2018

Lyme: battery won't recharge

This 32-year-old mother of two sought my attention regarding the issue of Lyme disease.  She hadn’t thought much about Lyme disease until a friend mentioned it to her.  She relates that she felt somewhat poorly since she had mono in high school.  Her energy level had always been lower than that of her peers.  She slogged through college. Classes and studying sapped all the energy she could muster. Friends went to parties but she stayed in. Exhausted. Relishing a moment to sit and recharge her batteries. Her battery, not unlike that in my iphone, would run down more easily and become harder to recharge over time.  She had aches and pains but thought it was normal. After all, she was getting older at age 21.  She managed to complete her 4-year degree and go on to have a successful career – always a struggle. She saw a succession of doctors trying to find out why she was so – so tired all the time. Her brain became foggy and it became more difficult for her to focus on much of anything for very long. Her job was in peril.  Luckily, one of her doctors suggested she had ADD and prescribed Adderall. A godsend. She was more awake during the day and was able to focus enough to get by .  Still, she felt like she was lost in a fog – something she couldn’t explain to family or friends.  Her family doctor suggested she had either fibromyalgia, chronic fatigue syndrome, stress or just depression.  He prescribed Lyrica and Cymbalta. What a disaster. She felt much worse. Further on the path of life she met her future husband, married and retired from the work force. She sought pregnancy and motherhood.  She had several miscarriages and then a pregnancy “stuck” and she carried her first born to term. Hey. She felt pretty good during the last 2 trimesters but crashed and burned after the birth of her first child.  Now she had real pain. Everything really hurt.  The pain moved from one joint to the next. She experienced joint swelling, especially in her knees and fingers.  She was referred to a rheumatologist who diagnosed “seronegative” rheumatoid arthritis and prescribed methotrexate and Enbrel. The joint pain was a little better but she otherwise felt awful.  She was more tired than ever.  She became more and more forgetful.  At 26 she felt like she had Alzheimer’s disease.  She couldn’t remember names or words. She forgot her best friend’s name. How embarrassing.  She couldn’t remember where she placed her keys or where she parked her car. She would end up someplace and have no clue how she got there. Luckily, she was able to restart the Adderall and it helped a little.  She stopped the drugs prescribed by the rheumatologist – against the advice of her primary care doctor, family and friends and started feeling a little better – in some ways. But new and different symptoms appeared. She had numbness and tingling. And weakness. Her legs weighed a ton and it was hard to walk. A neurologist said there was nothing wrong. Everyone told her they were tired of hearing her complain – so she thought (family disagreed). So, she sucked it up and suffered silently.  She got pregnant for the second time (surprised, since she rarely had sex) immaculate conception she joked – no libido and no energy -- and again, during the pregnancy felt a lot better. The forgetfulness wasn’t better but no one seemed to notice. She did. And it frightened her. After the birth of her second child all hell broke loose.  She was so tired she could barely get out of bed.  She had all sorts of pain. Joint pain, muscle pain, burning pain, electrical jolts, headaches and more.  She experienced drenching night sweats, head to toe and had to change her PJs every night.  She had become socially isolated.  Lyme was mentioned by about the only friend she had left. After doing some homework she came to see me. 
She grew up in a suburb or Maryland and her parent’s home back up to a state park. There were always deer in the yard. She loved to traipse through the woods. She remembers she once had boundless energy – until she got mono at age 15.  She remembers a few tick bites but they were removed without a second thought. She never had a rash of any kind after the bites. 
Her exam showed a chronically ill appearing young woman and signs of neuropathy. 
Labs:  Lyme Western Blot negative – but a Blot by MDL showed sub-positive reactions at multiple IgM bands, including 34 and 39. It was negative by only a few percentage points.  There was a positive anaplasmosis IgG antibody. A Babesia screen showed a positive WA1 – B. duncani antibody with a titer of 1:512 and a Giemsa stained peripheral blood slide showed evidence of atypical, small appearing inclusions in many red blood cells. 
This was 9 months ago.
She is much better now.
Discussion:  Most Lyme infections are asymptomatic.  This is also true for Babesia.  The clinical scenario of Lyme symptoms appearing after mononucleosis is something I have seen many times.  She didn’t have Lyme misdiagnosed as mono. She really had mono but the mono infection (EBV) unleashed the silent Lyme.  She has had symptomatic Lyme for more than half of her life.  Lyme frequently progresses in fits and starts showing different faces along the way – as described here. Remission of symptoms during pregnancy frequently occurs. Pregnancy by design is an immune suppressed state for protection of the fetus.  This misdiagnosis of rheumatoid arthritis is all too common. The immunosuppressive drugs may have temporarily helped some symptoms while fueling the pathogens.  It disappoints me how often neurologists dismiss findings of neuropathy as in this case.  ADD? Not really. ADD is genetic and lifelong. It would have been noticed at age 6, not adulthood.  Lyme frequently attacks neural pathways to the frontal cortex, the executive area of the brain, mimicking ADD.  Stimulants like Adderall can help mitigate symptoms – without causing harm. Fibromyalgia is another common misdiagnosis.  The drugs, (Lyrica etc.) universally make patients worse. The symptoms described above are fairly typical. There is a concern regarding the kids – who are doing well, because congenital Lyme is real.  Babesia is a big problem.  It didn’t appear clinically until after the second pregnancy.  This is not unusual.  Signs and symptoms appear when they want to. B. duncani is quite common, unlike B. microti which is quite rare. (discussed elsewhere). Anaplasmosis frequently appears as an asymptomatic testament to a bite from an infected deer tick or lone star tick. Therapy for this bug is covered with one of my first line go to drugs, doxycycline, barring no contraindications.  Doxy covers the watershed of pathogens ranging from Rickettsia to rabbit fever (tularemia). Admittedly, doxy is not the first line therapy for tularemia, which I never see, but provides some coverage.  Doxy either weakly or strongly hits most, if not all of the common coinfections. 
Treatment:  No two patients are exactly alike. A lot is determined by the intensity of Herxheimer reactions. Fortunately, her reactions were intense but relatively short lived and tolerable.  Babesia seems harder to treat these days and perhaps more resistant. We were able to heel the symptoms with a combination of atovaquone, artemisinin-based therapy and a couple of others (discussed elsewhere). Lyme, I believe, is best managed with a cocktail of several drugs. If the response to oral antibiotics is inadequate intravenous antibiotics may be called for. Here, there were clear reasons for IV therapy -- brain involvement, the severity of the disease and its long-standing nature. The mainstay of IV therapy is still Rocephin until something better comes along.  Daptomycin, also discussed elsewhere, is not a realistic option so others synergistic agents are used along with a cephalosporin. Zithromax for example, can be given IV and dovetails for the treatment of Babesia. After some mixing and matching of multiple antibiotics and antimalarials my patient is feeling much better. Not cured, but up and about with a smile and a reasonable quality of life. She no longer feels guilty about dumping the kids in day care and onto their overworked father. Lyme cases are not all this easy and not all this hard. IV therapy requires multiple agents and must be continued for an extended period of time. Patients are transitioned to oral therapy when IV antibiotics are withdrawn (not yet for this patient).  Clinical decisions are based on clinical parameters which are mostly subjective. How do you feel?  There are no other good clinical metrics. 

The statements are based on my opinions and clinical experience.  This “case” is not based on one patient, (although a reader or two may be sure it is about her) but rather an amalgam of several patients and accurate as such.
Disclaimers and caveats:  Colleagues on the IDSA side of the fence feel that neuro-Lyme cannot be established with a spinal tap. I disagree. Technical stuff. An examination of CSF (cerebral spinal fluid) is relatively insensitive. The most common positive findings are nonspecific – elevated protein and slight elevation of white blood cells.  Tests which may be positive, including testing for Western Blot antibodies are nonstandard.  The gold standard PCR is an elusive standard.  This is a very insensitive parameter. All PCRs are not the same. Bacteria, prokaryotic organisms, lack a nucleus. Most of the reading DNA is a straight nuclear-like fragment. Standard testing may get negative results because the primer regions are not as conserved as thought.  IgeneX gets more positives because a second set of primers aligns with a plasmid-based fragment of DNA. 
Anyway – Lyme is a tissue bug and not always found in body fluids.  Other tests, including an MRI and/or a nuclear medicine brain scan may show abnormalities. I think the diagnosis of neuro-Lyme is largely a clinical one. That’s my opinion (shared by may others). 
IDSA colleagues do not agree with the long-term use of antibiotics and believe this belief is shored up by scientific evidence.  A perusal of my last several blog posts provides arguments to the contrary. 
One must call into question the use of arcane and intellectual arguments for the instruction of clinical decisions.  Clinical decisions are just that: clinical.
I am not making recommendations for the treatment of any one particular patient. I am loosely describing principals of therapy which may be considered, based on an ILADS vs IDSA perspective of the disease. One must always be aware of the risks of antibiotic therapy which include C. diff colitis, which can be serious and rarely fatal.  Antibiotics are not to be used without a great deal of thought. Risks and benefits must be balanced.  Antibiotics should only be prescribed by a knowledgeable physician, familiar with the pharmacology of the agents and side effects.  IV therapy by indwelling catheters, e.g. PICC, has risk, including blot clots and rarely sepsis. Professional nursing agencies and staff must be engaged.  Probiotics are important and must always be used. 
There term ILADS vs IDSA is used to provide general context.  The disagreement is about the role of chronic infection and whether or not long term, intensive therapy is appropriate.  One needs not be a member of or subscriber to either of the organizations on this basis.

My iPhone 7 actually works just fine. (Boy, I really am getting paranoid).

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Olive said...

I love your blog and think it is a great public service. I wanted to ask about something in this entry. I've been repeatedly told that Lyme rarely causes pain/swelling in multiple small joints (such as fingers), and that it tends to involve one or two large joints (such as knees). But I notice that the patient you're describing in this entry did have arthritis symptoms in her hands. I wanted to ask whether, in your experience, Lyme can ever cause osteoarthritis in the hands -- as opposed to the kind of inflammatory arthritis that one typically sees in, say, rheumatoid arthritis.

The reason I ask is that I am receiving conflicting advice from my primary care doctor and my rheumatologist regarding joint pain I've recently started experiencing. My primary care doctor strongly believes I have Lyme, based on various test results. My rheumatologist rejects this diagnosis and says that these tests are unreliable. I have various symptoms that my rheumatologist says are classic autoimmune issues -- dry eyes/mouth, fatigue, etc.

In early January, seemingly overnight, I developed pain and swelling in my finger joints (DIP and PIP). The swelling is hard/bony, rather than "boggy" as one would expect in, say, rheumatoid arthritis. A recent ultrasound showed that, in addition to some synovial inflammation in the MCP joints (suggesting inflammatory arthritis), my fingers are showing signs of osteoarthritis. It seems odd to me that the osteoarthritis would have come on so abruptly and suddenly. I was wondering if Lyme could possibly be an explanation -- or if this is just a result of some separate autoimmune process. Because I'm unsure which it is, I find myself uncertain which doctor's advice to take and which course of treatment to follow.

Pearl said...

Disclaimer: I am not a doctor. But my experience and years of reading and communicating with other patients tells me that rheumatologists are poor diagnosers and treaters of Lyme Disease. They invariably defer to their own specialty, I think because they simply don’t know how Lyme can mimic autoimmune disorders, or even trigger them.

As a chronic Lyme sufferer, I would lean toward your primary care doctor’s opinion. In real life, Lyme tests are very rarely false positive. The idea that they’re unreliable is true, but that they’re frequently false positive is simply false. I don’t know how they explain that you have Lyme-specific antibodies without having Lyme.

P.S. I heard second hand about a guy who got terrible joint pain and swelling in his hands with Lyme. He was misdiagnosed for over a year, and ended up with permanent neuropathy in his hands despite eventual treatment for Lyme.

P.P.S. If you do decide to go with the rheumatologist, you should see improvement quickly if that diagnosis is likely correct. If you have no improvement or get worse or get new weird symptoms that are unrelated to arthritis, then that diagnosis is likely wrong. The risk with taking immune suppressants is that you can get worse, even suffering permanent damage. Allowing Lyme to get worse by suppressing the immune system lengthens and complicates treatment.

It seems to me that unnecessary antibiotics are of low risk if there’s no infection.. Unnecessary immune suppressants are of high risk if there’s no autoimmune disease..

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