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Thursday, October 20, 2016

Lyme and mold illnesses

OPEN LETTER TO THOSE WHO DO NOT BELIEVE IN LYME DISEASE

Lyme and mold illnesses

Alain Mass, MD, 
Board Certified in Family Practice
Monsey, NY 
facebook Lyme and mold illnesses

In 2006, the Infectious Diseases Society of America (IDSA) set guidelines for Lyme diagnosis which established that a negative ELISA test result rules out Lyme disease without any further testing. When the ELISA test is positive, it must be confirmed by a positive Western Blot test in order to have a positive Lyme diagnosis. This is referred to as the “two-tiered” testing system. The IDSA states that clinical findings alone are not sufficient for diagnosis of extra-cutaneous manifestations of Lyme disease and that the “two-tiered” testing system is reliable for clinical use. 
In contrast to the IDSA, the Lyme and Associated Diseases Society (ILADS) states that the “two-tiered” testing system is not reliable to rule out Lyme disease.

On one hand associations of patients in the USA and Europe, and some physicians, claim that cases of Lyme disease are being misdiagnosed due to the strict adherence to unreliable diagnostic guidelines, resulting in many patients being excluded from needed medical care. On the other hand, many other physicians claim that they do not believe in Lyme disease. Patients quite often report getting such statement from their doctor.

Not believing in Lyme disease may imply that the symptoms are relevant of a psycho-somatic disorder or an illness other than Lyme disease and that the “two-tiered” testing system is reliable to exclude Lyme disease. I will oppose to the belief that Lyme disease does not exist through a strict methodical clinical approach. I will review the symptoms that are commonly seen in patients suspected of having or claiming to have Lyme disease and will go through the differential diagnosis in an attempt to rule out a psycho-somatic disorder and to identify a common clinical pattern that remains to be understood if it is not due to Lyme disease.

CLINICAL MANIFESTATIONS
The symptoms that are commonly seen in patients suspected of Lyme disease or claiming to have Lyme disease include but are not limited to the following list.

- The fatigue is of variable intensity, fluctuating with good days and bad days and may be extremely severe. Surprisingly, the patient reports being exhausted despite eating well and sleeping well whereas at some other times feeling much better despite less sleep and less food. The food does not trigger or improve it. The patient denies snoring. The location, weather, or seasons do not affect the fatigue.

- The typical rash of Lyme disease called erythema migrans is only specific to three variations of tick-borne diseases,-Borrelia burgdorferi, Borrelia miyamotoi and STARI. In all other strains of Borrelia and co-infections the erythema migrans is absent. The rash may be absent or may go unrecognized in 20-40% of patients.

- Only 30% of the patients report a history of tick bite. In another study on erythema migrans, only 14% of the patients recalled being bitten by a tick.

- Facial paralysis, though a very well-known clinical sign of Lyme disease, is actually rarely seen.

- The joint pain affects different joints without clear distribution and migrates from joint to joint. The joint pain may be associated with joint swelling. Muscle pain, twitching, cramps and weakness are very commonly seen. They may follow the same pattern occurring with or without fixed distribution, migratory, without known trigger, without timing not affected by location, weather, food, or position. The intensity may be severe and fluctuating without reason.

- The headaches are usually tension type of headache. The location, weather, time, food and exertion do not affect the headache. There is no history of TMJ, of sinusitis and the patient denies any runny or stuffy nose.

- Excessive sweats, flushing, fever and air hunger are suggestive of Babesia, a co-infection of Lyme disease.

- The dizziness frequently seen may be ill-defined dizziness but may also be frank vertigo, associated with loss of balance or occurring especially when the patient changes position from being lying or sitting to an upright position.

- The patient is also complaining of multitude of neuro-cognitive symptoms that may include tremor, pins and needles, stabbing, burning or shooting sensation, attention deficit, brain fog, difficulty thinking, disorientation, etc.…There is no known trigger. The location, time and food do not affect these symptoms that occur on and off and up and down.

- Cognitive disorders are one of the most common symptoms. The patient admits a decline in his school or professional performances, a slowness of understanding, of following conversation.

- The memory disorder is rather a slowness of retrieval rather than a frank memory loss. The patient may go to a room and forget the purpose of it. Remembering the different steps of a task or phone numbers or names or a shopping list may become more difficult.

- Dr. Brian Fallon writes in the American Journal of Psychiatry; “Psychiatrists who work in endemic areas need to include Lyme disease in the differential diagnosis of any atypical psychiatric disorder”. Many patients complain of sleep disorder.

Mr. J is a college student who was only complaining of attention deficit disorder. I have known the patient for years as an A student. Once I ruled out depression or anxiety, I ordered a Lyme disease blood test that came back positive. After antibiotic treatment, the patient got back his ability of focusing and regained the same grades as before. A new onset of ADD was a clue for Lyme disease.

The review of systems is pertaining to symptoms that the patient is not spontaneously complaining of. The patient may not be aware that it connects to the chief complaint. The chief complaint, alone, cannot be conclusive. The association between different organ systems may be more suggestive of Lyme disease. Oftentimes, patients do not readily disclose symptoms such as a new onset of clumsiness, decreased professional performance, memory loss, wording or speech impairment or difficulty focusing unless prompted by the physician. Since key-symptoms are not always spontaneously disclosed by the patient, a history only focused on the chief complaint may miss essential diagnostic clues. The review of systems should always be thorough and should always include the assessment of the autonomic nervous system, cognitive functions, communication skills, oral and written, attention span, sleep pattern and psychological status. All aspects of memory should be assessed; especially the working memory which is more often affected.

A 33 year old woman was seen by a neurologist for headaches and was diagnosed with tension headache and sent to a physical therapist as sole treatment. While the patient only complained of headaches, the review of systems was positive for persistent fatigue for the past three months, air hunger, bilateral migratory ankle pain, back pain, severe neck pain with stiffness, nausea and photophobia, burning feeling of fingers, generalized muscle pain, weakness to the point to drop objects, excessive sweats, new onset of anxiety and new onset of attention deficit and insomnia. Her Western Blot test for Lyme disease was positive.

IS IT PSYCHO-SOMATIC OR NOT?
By principle psycho-somatic disorder should be retained as a diagnosis of exclusion.

- If there is presence of objective clinical sign, it then shows evidence of a non- mentally related illness. Joint swelling may be associated with pain. Cutaneous manifestations may be suggestive of Bartonella infection. The drop of blood pressure or a significant raise of the heart rate (when the patient gets up from lying position) without evidence of anemia or dehydration suggests autonomic nervous disorder.

- Some other complaints, though not specific or diagnostic, however, are suggestive of non psycho-somatic disorder: The dizziness triggered by noise or Tullio's Phenomenon is a clinical sign that has been described with syphilis.

- Because, quite often, it takes multiple courses of antibiotics and a particular combination of antibiotics to obtain a successful response, it is rather unlikely to claim a placebo effect. 
- The frequent presence of inflammatory markers and the abnormalities on MRI, on Neuroquant MRI and or SPECT scan testify of a non-psycho-somatic illness, as well.

- Lastly, the frequent common combination of different symptoms of multiple systems to multiple patients render unlikely the possibility of a psycho-somatic disorder but rather raises the question of a syndrome to define.

IF NOT LYME, IF NOT PSYCHO-SOMATIC, WHAT IS IT?
Since a psycho-somatic disorder can be often ruled out, it remains to narrow down the diagnostic approach by reviewing all the differential diagnosis. 
- Very few conditions cause migratory pain (auto-immune arthritis, gonococcal arthritis, rheumatic fever, hepatitis, Whipple’s disease and Lyme disease). The appropriate work-up should eliminate the above possibilities.

- Excessive sweats are a typical feature of Babesia. Menopause is easily ruled out. The Quantiferon test is negative for tuberculosis. Hyperthyroidism, hyperuricemia, hepatitis, lymphoma, carcinoid syndrome, pheochromocytoma, diabetes and rheumatic fever may be ruled out as well.

- The headaches may differ from the typical tension type of headache by associating nausea and photophobia and phonophobia.

- Paresthesia (Skin sensations) may be due to vitamin or mineral deficiencies, multiple sclerosis, Traumatic nerve damage, nerve entrapment, nerve compression, peripheral neuropathy, stroke, encephalitis, CNS tumor, arterio-venous malformation, diabetes, alcoholism, heavy metal toxicity, hypothyroidism, Rheumatoid arthritis, Lupus, infection like Lyme, syphilis etc.…

By exclusion of all possible differential diagnosis by complete blood work, testing and imagery, by suggestion by common repeated patterns and characteristic symptoms, a common syndrome can be identified. Interestingly enough, late stage of Lyme disease reminds the late stage of syphilis affecting the nervous system and multiple systems and causing mental illnesses. It is not surprising since both belong to the family of spirochetes. It is also noteworthy to observe that patients who do have a positive Lyme disease serological test have similar symptoms. It is also seen with mold and heavy metal toxicity. Many of these symptoms are seen with chemical sensitivity, toxicity like heavy metal toxicity and biotoxicity like Lyme disease, mold toxicity, Mycoplasma etc…

Biotoxin illness affects the innate immunity. Commonly the ESR or the CRP is not elevated but some inflammatory markers, in particular the TGF beta 1, the MMP9, the complement C4a and C3a are often frankly abnormal.

A 23 year old man came for chronic fatigue syndrome and very few and seldom knee pain. He is proud to state that that he has a sharp mind understanding quickly all what he studies. The problem is that he cannot remember what he understood. He admits that he has to call his wife many times when he goes shopping because he keeps forgetting the shopping list. He complains of migratory multiple joint pains with joint swelling. His headaches are tension type of headaches but are associated with photophobia which suggests meningeal headache. The Western Blot test for Lyme disease is negative according to the IDSA criteria. Because of the association of a frankly elevated complement C4a, migratory joint and muscle pain, chronic fatigue, severe memory impairment and tingling of lower extremities, a brain Neuroquant MRI was ordered, which shows evidence of enlargement of the white matter and cortical gray matter, a small caudate and enlarged putamen. The possibility of stress-related memory loss is definitely ruled out. The Blood test shows indeterminate results for 4 specific bands of Lyme disease; the 23, 31, 39 and 93. It remains to find the cause if not Lyme disease.

QUESTIONS ON SEROLOGY TESTING
Doctors who take a medical decision based on a test are entitled to ask experts questions about the test. Several questions arise from the application of the “two-tiered” testing system.

Could it be possible that a serological test may not have any false negative result?

Why serial serology testing is not required like other infectious disease?

Why immune-suppression and inability to produce antibodies are not considered?

What does a sensitivity of the “two-tiered” testing system of 80-90%, as reported by the IDSA to rely on it, really mean? 80-90% of the population enrolled in their studies or 80-90% of the general population? Would my patient with new onset of ADD, who turned out to be positive for Lyme disease despite the absence of known tick bite, bull’s eye rash and arthritis, have been enrolled in their studies?

The 31 and 34 bands were considered diagnostic bands until October 1994. These two bands have since been removed from serology tests because the Lyme vaccination was causing false positive results for these two bands. Despite the fact that the Lyme vaccination has not been available for many years, the 31 and 34 bands were never reinstated, resulting in higher rate of negative test results. Why?

Since statistically slightly over ninety nine percent of the population is within three standard deviations of the mean. Why two studies conducted to verify the sensitivity of the Lyme disease blood test used a 5 and 8 standard deviations, resulting in a much higher rate of negative test results?
Why does the CDC states on June 15, 2007 that their surveillance diagnostic criteria were not meant to be used for clinical purposes:“This surveillance case definition was developed for national reporting of Lyme disease; it is not intended to be used in clinical diagnosis.” and on January 29, 2004:“A clinical diagnosis is made for the purpose of treating an individual patient and should consider the many details associated with that patient’s illness. Surveillance case definitions are created for the purpose of standardization, not patient care.” and why IDSA does not follow the CDC statements?

CONCLUSION
If the physician only focuses on the main complaint that motivated the visit, it is very unlikely that Lyme disease may be suggested. Only a methodical and thorough review of systems may lead to questions of a distinct syndrome suggestive of Biotoxin illness including Lyme disease. It results in considering heavy metal toxicity like chronic mercury toxicity, mold toxicity, which may imitate Lyme disease. It results in discovering mineral or vitamin deficiencies like low magnesium, low vitamin Bs, which may cause symptoms similar to Lyme disease or brain abnormalities which sheds concern for the patient’s future. A medical belief is an ambiguous expression. A physician knows or does not. A physician reads the medical literature or does not have time and refers to who did. Dr. Bransfield, psychiatrist writes: "Over two hundred peer-reviewed articles describe the causal association between Lyme/tick-borne diseases and mental symptoms”. A quick answer based on belief is questionable when it does not lead to any solution or any other question.

The controversy is not only about the reliability of the Lyme disease blood test. The question is also about the value of a methodical and complete review of systems that is not appreciated. Bertrand Russell, British philosopher and mathematician, said, “Evidence Based Medicine must always be the servant, not the master.” This statement is applicable to guidelines, which are useful and needed. Yet when they are followed by either the promise of a quick diagnosis, or as substitution for clinical judgment, there is a great risk of pitfall. Many practitioners who treat Lyme disease patients, and who become familiar with patterns and associations of symptoms, feel unjustly limited by a non-individualized formula that over-rides clinical judgment.

Can primary care physician challenge guidelines? If pertinent questions remain unanswered or in a non-satisfying manner leading the patient to despair and pain, if expert opinion remains unsuccessful, there is an ethical duty for the primary care physician to search for solution to relief the patient. Clinical diagnosis of Lyme disease and empirical treatment in this setting should be then discussed.
                                                                        *************************
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