An open letter to prospect lyme patients

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Dear Prospect Patient,   

Thank you for inquiring about treatment, I was notified that you have elected to see other specialist physicians. My primary goal as a physician, who received a report of your symptoms for treatment, is to address your suffering by disclosing my comments, and to guide you in the route you have chosen.    

The type of headaches described by answers in the screening questionnaire are tension-type of headaches that are associated with light sensitivity which suggests meningeal irritation (meningism or Dupre's syndrome), which by itself, highly suggests Lyme disease as a possible diagnosis.    

Also, symptoms were reported that involve the central and peripheral nervous systems. The combination of meningeal irritation, central nervous system (roaming noise, blurred vision, double vision, difficulty coordinating your limbs, vertigo, tics), and peripheral nervous system (pins and needles, tingling) is considered as the clinical hallmark of Lyme disease. 

The association of cognitive dysfunction, mood disorder and autonomic nervous system disorder (dizziness on standing up) supports even more the suspicion of Lyme disease or tick-borne disease.   Even though the involvement of all nervous systems is characteristic of tick-borne disease, I recommend a brain MRI with NeuroQuant or a brain Spect scan to support the diagnosis of Lyme disease or to look for other diagnoses and a blood and urine tests to rule out other diagnoses, like vitamin or mineral abnormalities as well as toxicity.     

Also reported are symptoms of migratory muscle and joint pain. There are only 7 differential diagnoses for migratory joint pain in the medical literature: Crohn's disease, gonococcal arthritis, hepatitis, Lyme disease, reactive arthritis, rheumatic fever, and Lupus. I recommend searching for all these diseases and by elimination the most likely cause will be evidenced.    

The tics that started shortly after an infection allude to PANDAS or PANS. Be aware that Lyme disease can cause auto-immune encephalitis (PANS) or can be associated with PANDAS.   Babesiosis due to the co-infection Babesia is often transmitted by the same tick that transmits Lyme disease and typically causes unexplained sweats, rib cage pain, air hunger that you describe which increases even more the likelihood of tick-borne disease.    

Your sleep disorder may have different causes, but sleep disorder occurs in 70% of Lyme patients. As to your mood symptoms, intrusive thoughts, irritability, and anxiety are also typical of Lyme disease and emotional numbness as opposed to sadness is best explained by the biochemical effects of Lyme disease. The character intermittent, fluctuating, and unpredictable is the most characteristic feature of Lyme disease.   More information is needed to characterize the effect of location that you mention. 

Mold toxicity looks a lot like Lyme disease, but in fact is most often associated with it. There is a high probability you were exposed to mold. Some of your symptoms and your good response to antihistamines suggest Mast Cell Activation Syndrome (MCAS) which does not exclude tick-borne diseases or mold since both can cause MCAS and are often associated with MCAS. As to your unexplained abdominal pain associated with tingling, numbness - they suggest porphyria which can be genetic or acquired and also caused or aggravated by mold toxicity.   The unexplained hair loss can be explained by hormonal disturbances, infections or dermatological diseases, but can also be explained by the presence of cytokines (TGF beta 1 known for causing hair loss) as seen with Lyme disease and mold toxicity.   

Thoroughness, as opposed to not believing in Lyme disease, takes time and the clinical diagnosis of Lyme disease relies on a methodical series of questions that takes 30 to 45 minutes. Be aware of an existing controversy over Lyme disease that opposes these specific organizations IDSA (Infectious Disease Society of America) vs ILADS (International Lyme and Associated Diseases Society) that divides the medical world. Even institutions under the same roof may be opposed.   

The Department of Infectious Diseases of Columbia University follows IDSA and the Department of Tick-Borne Diseases ILADS. The American CDC follows IDSA, but the Chinese CDC aligns with ILADS.   New York State follows ILADS, New Jersey IDSA. ILADS echoes the peer reviewed medical literature and is guided by leaders in medical research. IDSA follows the guidelines established by 14 infectious disease doctors.   

The best way for a patient to appreciate the expertise of a physician is either by being cured or by having pertinent questions answered. A patient must know that he or she needs 90 minutes or two hours for a comprehensive visit for the doctor to be able to make a clinical diagnosis - planning to eliminate all different diagnoses and searching for all associated and aggravating factors.   Since Health Insurances pay by patient and not by time, the quality of care that requires time, methodology, thoroughness and broad spectrum of medical literature gets compromised by a 15 to 30 minute visit and by the other patients that are already sitting in the waiting room.    

The Department of Infectious Diseases of Columbia University who follows IDSA takes one minute to read the Lyme disease blood test to diagnose or exclude Lyme disease and the Department of Tick-Borne Diseases who follows ILADS requires a 3-day testing program . A quick answer to your symptoms without the thoroughness of a comprehensive questionnaire may not bring resolution to your illness regardless of the title or rank of the doctor.    

If your doctor cures you, the controversy over Lyme disease is not relevant to you. If the doctor does not cure you, you may, then, wonder whether the diagnosis is correct or not. You may also be prepared to avoid wasting a precious time by asking your provider the right questions. A long and comprehensive appointment for discussion and questions is how I can help you today.   

Be aware that aside from the bull’s eye rash, there is not one symptom that enables the diagnosis of Lyme disease. At the most, it highly suggests it. There is always a possibility for an expert physician in the symptom of concern to diagnose a disease other than Lyme disease. 

Headaches with light sensitivity are commonly diagnosed as migraines even despite the presence of pressure. Pins and needles can be diagnosed as a mark of anxiety and cognitive disorders as ADD or depression.   You may be referred to a neuro-ophthalmologist for your blurred and double vision. 

If you ask your neurologist about your mood problems, he will refer you to a psychiatrist. The psychiatrist will give you a diagnosis and a treatment, but will not answer why you have muscle and joint pain. 

If you ask about your joint pain, you will be referred to a rheumatologist who may give you a diagnosis of rheumatoid arthritis.   Since you know all the different causes of migratory joint pains, you will be able to appreciate the thoroughness of the workup. 

If you ask the rheumatologist about your mood problems, your blurred and double vision, he will probably refer you to a neurologist, a neuro-ophthalmologist and a psychiatrist and as to your hair loss to a dermatologist. You can be referred from specialist to specialist because no one may connect the dots.    However, the dots are there. 

Please note whether you are asked the same questions you were asked in this questionnaire. If some are missing, bring them to the provider's attention if you are given the time for it.  It is not one symptom that allows the diagnosis of Lyme disease, but the characteristics of the symptoms to be on and off, unpredictable and the combination of multiple systems, like the brain, the muscle, the joints etc… All together and with the absence of other diagnoses the diagnosis of Lyme disease can be considered.    

You will probably have a Lyme disease blood test. Two scenarios may happen. Your Lyme disease blood test may be positive or negative.   If your Lyme disease blood test is positive. You will be treated and probably referred to an infectious disease doctor. If you get cured, you are part of the 80% of Lyme disease patients who get cured after one month of antibiotics. You do not need a “Lyme disease doctor”. 

This success rate of 80%, however, is relevant to the initial phase of Lyme disease, soon after a tick-bite. If you have Lyme disease, it is a late disseminated phase.  If after treatment, symptoms are not completely gone, you, then, qualify for what the CDC calls the Post Treatment Lyme Disease Syndrome (PTLDS).    

The concern of persistent and resistant symptoms for years is also recognized by the Infectious Diseases Society of America (IDSA). Dr. Gary Wormser from IDSA from the Westchester Medical Center writes:  

 “Late Lyme Borreliosis may develop among some untreated patients, months to a few years after tick-transmitted infection. The major manifestations of late Lyme Borreliosis include arthritis, late neuroborreliosis (peripheral neuropathy or encephalomyelitis).    

The CDC admits:  

 “Unfortunately, there is no proven treatment for PTLDS”.    

The CDC and IDSA strongly recommend against treating with antibiotics after one month of treatment. The International Lyme & Associated Diseases Society states that the Lyme bacteria can persist despite antibiotics.    If your Lyme disease blood test is negative, your doctor, according to the standard of care, will deny that you have Lyme disease. You may be, then, given another diagnosis or worse…no diagnosis at all, but only referrals to other doctors.    

The International Lyme and Associated Diseases Society (ILADS) states that the Lyme disease blood test is not reliable, and that Lyme disease may be present despite a negative blood test.    You may also hear that your physician does not believe in Lyme disease. This is unfortunately quite common to hear. 

A physician, no matter the rank or prestige reads the medical literature or does not, knows or does not.   Belief is not a medical term and should not be accepted to deny a disease with potential treatment and resolution of chronic disease. I expect ,with the greatest scientific interest, to learn from expert physicians, who deny Lyme disease, to explain every single symptom as described in your questionnaire and the link between them.    

When patients do not get better despite diagnosis and treatment given by expert physicians, when physicians admit to not understand or when patients get referred from specialist to specialist without resolution, when patients or parents refuse the diagnosis of anxiety, depression, psychosomatic or psychiatric disorder or fibromyalgia, patients may then consider that other opinions exist.     

The use of antibiotics beyond a period of one month, strongly not recommended by the CDC, must be weighed against the chronic use, sometimes for life, of painkillers, anti-inflammatory drugs or psychiatric medications; and the emotional burden of an ill-defined chronic disease in the absence of any satisfying diagnosis.   

Please accept this letter as a guide for what you might expect from medical doctors you inquire with about treatment,  and I advocate for you to ask good questions and more from your treating doctor. 

Sincerely,  

 Alain Mass, M.D. 

Board Certified in Family Medicine 

Member of the International Lyme & Associated Diseases Society