Lyme and Fake News

I have known this 54-year-old woman for more than 2 years.  When she presented to my office she was a mess.  She thought she had Lyme disease after watching the movie “The Punk Singer.” She was disabled at the time, having been diagnosed with fibromyalgia, by her rheumatologist and diagnosed with depression and ADHD by her psychiatrist. She was told she did not have Lyme disease because a test was negative. I have previously discussed a gazillion reasons Lyme tests are unreliable. The persisting ignorance of other physicians, despite laws passed in VA and MD that require doctors inform patients the test is not reliable, is untenable.  My patient essentially lives in the woods, her back yard abuts a large park and she typically sees 20 deer daily in her back yard daily.  She is disabled by an illness, which is certainly not fibromyalgia and had to sell her business.  Her profession was:  boarding and walking dogs. Her son suffers with a similar disorder and 5 dogs she cared for tested positive for Lyme disease.   A reader might wonder: “how can the doctors discount Lyme when the history is so compelling?”  The answer is simple: Her doctors will not, cannot consider such a thing, when it is firmly entrenched in their brain(s)/medical world view that the diagnosis does not exist. For these doctors, Lyme is "Fake News".

Welcome to my world of medicine. The world is flat, not round.

My colleagues have been indoctrinated to believe: Lyme is rare, easy to diagnose and easy to cure. In my version of reality Lyme can devastate, maim and kill; lab tests are inaccurate, especially the commonly used one; treatment can be very difficult and prolonged.

The majority opinion still rules the land.  Opinion is the operative word.  As is said, you are entitled to your own opinion, not your own facts.  These blogs, scientific literature, books and films  and thousands of patient's stories, clearly tell us that Lyme is real.  It is the other side that has been beguiled by Fake News.

When I met this patient, she was bedridden. She had gained 60 pounds. Thinking about getting out of bed was a chore. Showers were virtually impossible. She was frequently confused and found her memory was slipping away. Her previous eidetic (photographic) memory was gone. Conversing was a challenge. Words didn’t come out right.  She couldn’t fall asleep, and on the occasion she did, she woke up every 2-3 hours. Her entire body hurt, head to toe. She was very weak. She couldn't hold a cup of coffee. Even cutlery dropped from her hands.   Her body felt numb and odd electrical sensations frightened her, sharp and burning, and without warning in differing areas of her body.  Numerous other symptoms included: fevers, chills, night sweats, hearing loss, loss of vision, floaters, neck pain, severe air hunger, new GERD, frequent urination, joint pain and swelling, stiffness, headaches, disorientation, inability to read and write, depression, mood swings, easy tearing and recurrent generalized itchy rashes.

There is more to her story.

As a child she had recurring sinusitis, bronchitis and pneumonia. She was diagnosed with asthma and spent a lot of time in an “iron lung.”

She experiences a lot of hives and itching which seem to appear randomly. She described a condition called dermatographia, written words on her skin become red and persist for a long time.

Lab tests:  Tickborne infection panel: negative Lyme, positive Bartonella, all others negative.  Histamine and tryptase normal.  Celiac panel: deaminated gliadin IgA aby 7 (positive cut off 19).  Imunnoglobulins: IgG 792 (normal 700-1600), IgG subclasses 1 and 3 mildly low, Pneumoccocal 14 aby 9 strains not immune.

I diagnosed her with: Lyme disease, babesiosis, bartonellosis, gluten sensitivity, immune deficiency (CVID), chronic variable immunodeficiency syndrome.

She tested positive for Bartonella; on clinical grounds, Babesia was the big issue.

I diagnosed a form of mast cell activation disorder based on the history. Blood tests and urine tests are usually negative and the diagnosis is made clinically.

CVID was diagnosed by: history of chronic infection; low immunoglobulin level; poor immunity to Strep pneumonia strains (which didn’t change post Pneumovax, pneumonia vaccine).

Gluten sensitivity was a guess.  A gliadin IgA antibody greater than 3-4 makes me suspicious.  The celiac panel reports 4 values: Gliadin IgA, gliadin IgG, tTG IgA, tTG IgG. Most doctors only look at the tTG IgA.

Treatment:  Diet -- low histamine and no gluten. Mast cell stabilization agents. Antibiotics. Anti-malarials. IVIG.  

Discussion

I don’t automatically tell patients to eliminate gluten. Most my patients tolerate it. A slight bump in any of the antibody levels seems to correlate with gluten intolerance.

Most patients do not have significant mast cell issues.  In this case, a typical history was given.

 Most patients do not have an immune deficiency issue provable based on current standards.  Patients with chronic Lyme all have dysfunctional immunity.  In this case the diagnosis was firmly based on lab tests and a lack of immune response to vaccine.  Generally getting IVIG covered is tough and otherwise cost prohibitive.

I always include treatment for Lyme at the start, rather than targeting only a coinfection such as Babesia.  Lyme forms persisters but does not gain resistance to antibiotics in the usual way. In other words, the same drugs will always work. I typically work up to cocktail of 3 drugs when starting an oral regimen, adding one at a time. With intravenous therapy, I use fewer antibiotics.  Many antibiotics interact with Mepron, decreasing efficacy of the latter.

Mepron is still first line therapy: I always start with 2 tsp twice daily, double the usual dose. If I am concerned about drug interactions I may start with artemisinin instead.  When prescribed properly, pulsed for 3 days each week, artemisinin can be very effective.  Herxheimer reactions often direct therapy based on patient tolerance.

Excessive mast cell activation is modulated with a mix of meds.  H1 and H2 histamine receptors are blocked with drugs like Xyzal and Pepcid. Leukotriens are blocked with drugs like Singulair.  Mast cells are inhibited with drugs like cromolyn, benzodiazepines and ketotifen. Diet is key.

IVIG is given either subcutaneously or intravenously.  For immune disorders a lower dose is approved, 0.6 gm/kg.  With neurological disorders a higher dose, typically 1 gm/kg is used.  For autoimmune neurological disorders such as PANS, a higher dose of 1.5 gm/kg is used.  These are typical starting does and may be adjusted. Usually treatment is given every 3-4 weeks.  Treatment may be long-term or indefinite.

She has done great. Improvement occurred right away with mast cell therapy and then IVIG.  Antimicrobials did their job over a period of months. Within a year, she was essentially in remission.  She had a minor relapse after stopping antibiotics, and this has cleared.

She has only one remaining symptoms.  The eidetic memory did not return. Now she only has a very good memory. 

The story, save a few details changed intentionally, accurately depicts the case.

New patients are welcomed here.