A young man came into my office with a hodgepodge of odd symptoms. He wanted to know if he had chronic Lyme disease. In fact, there was nothing to suggest this diagnosis.
His presentation was consistent with what we used to call "the worried well."
Please note that what follows are my opinions. This is my Blog after all.
I have the utmost respect for the accomplishments of Dr. Burrascano. Nonetheless, I have concerns about some Lyme disease symptoms included in his guidelines.
The ILADS guidelines are quite circumspect and are the product of a committee of interested physicians and scientist. I feel that these guidelines are excellent. The ILADS web page links to Dr. Burrascano's guidelines. Dr. B's guidelines represent his opinions only, but I am not sure that this is made clear to the public.
Here is my concern: Medical Boards, the IDSA and members of the lay public read these guidelines. I am concerned that such entities may interpret small parts of the guidelines in ways which could have a deleterious effect.
A large menu of expanded symptoms is said to be associated with Lyme disease. A point system based on the presence of symptoms is suggested. While I agree that many listed symptoms suggest Lyme disease in its various manifestations, there are many symptoms on the list which I find questionable. I address these below. Again, let me make this clear. I think that the majority of Dr. B's symptoms are right on target. I am only addressing the small number of symptoms on the list which concern me.
Dental Pain: There are numerous reasons for this, I personally do not believe it correlates with Lyme disease. It certainly lacks specificity.
Neck stiffness: This is a common symptom. It is usually due to muscle spasms, cervical arthritis and other common orthopedic disorders. It is thought by many to be a symptom of Babesiosis. However, by itself, it lacks specificity for Lyme and related disorders. I am here not discussing neck pain in the context of pain/complex disorders including fibromyalgia. I am only discussing it as an isolated symptom.
Weight loss or weight gain: Well, which one is it? Appetite and weight changes are commonly seen. I again feel this symptoms is very non-specific.
Irregular menses: Their are numerous reasons for this. Dysfunctional uterine bleeding can be benign but it can also be linked to serious disorders like cervical cancer. This is not a typical symptom of Lyme disease. I understand that abnormal bleeding can be seen in the context of endocrine dysfunction related to Lyme disease. In and of itself this symptom is not specific for Lyme disease.
Bladder dysfunction: This is common and has many causes. Certainly it can be seen in patients with systemic Lyme disease, but it lacks specificity. I do see many patients with bladder issues but I would be hesitant to include this with a list of common Lyme symptoms.
Erectile dysfunction and loss of libido: These are common complaints. When I hear them from my patients I do not think of Lyme. There are many other causes.
Nausea and Heart burn: H. pylori is common. Lyme is fairly far down on the list of possible diagnoses. Patients may have ulcers, Barretts disease or even cancer. I have now seen evidence of Lyme infection of the stomach, as I recently reported. It has not been my experience that this is a common symptom in patients with Lyme disease.
Constipation and Diarrhea: This is a common complaint. It is usually associated with irritable bowel syndrome. It may be associated with celiac disease or even occasionally colorectal cancer. Lyme colitis is probably relatively common. Nonetheless, I would be hesitant to list this symptom.
Heart murmur and valve prolapse: Lyme typically causes arrhythmia, heart block and pericarditis. I have not seen it cause the mentioned syndromes/symptoms.
Head congestion, cough, sore throat: These are common complaints and usually due to upper respiratory infection, GERD or asthma. Air hunger may be seen in Babesia infection. Lyme may cause pleurisy. These symptoms seem to lack specificity for Lyme disease.
Hair loss: Male pattern balding is normal. Hypothyroidism may be considered. Not specific for Lyme disease. Alopecia areata is an autoimmune disease. It may be associated with Lyme disease. This symptom is non-specific.
Swollen glands: This is non-specific. I have seen Lyme present with this finding. Certainly it may be associated with Bartonella. Doctors must first exclude serious disorders like malignancy. It is a fairly non-specific symptom.
Back pain: This is generally due to a variety of common orthopedic disorders. Lyme is typically associated with large and small joint pain. It is rarely associated with back pain unless the sacroiliac joints are inflamed. Non-specific.
Headaches: Non-specific. Most common causes are migraines and tension headache. Headaches are commonly seen in patients with Lyme disease. However, the vast majority of patients with headaches do not have Lyme disease. This is a non-specific symptom.
Seizures and psychosis: Lyme is unlikely. Doctors must exclude brain tumors. Recently we have heard about Lyme rage and associated psychotic behavior. More frequently Lyme is associated with anxiety, depression, mood swings, ADD like symptoms and combinations of the above. Lyme as a cause of psychosis would seem to be quite rare.
Milk production: This may be due to a pituitary growth called a prolactinoma. Not
specific for Lyme disease. It may been seen in disorders of the hypothalmic pituitary axis which have been described in Lyme disease, but its association with Lyme disease is still low on the list of possible causes.
These symptom lists are published on the world wide web and linked to the ILADS web site.
Lyme disease is frequently a multisystem disease. It can be associated with a surprising list of symptoms. Patients cannot self diagnose. Only a physician, after carefully weighing all the clinical data can make the diagnosis. Patients may look at expanded symptom lists and reach unwarranted conclusion, as is the case with the patient I alluded to at the beginning of this Blog.
Such all inclusive symptom lists may create the erroneous impression that LLMDS think that everything is caused by Lyme disease. And this is simply not true.
I am a member of ILADS. My comments here should not be construed as an effort to disparage ILADS or Dr. Burrascano. Lyme disease and associated guidelines are in a state of flux and refinement. To the extent that my comments may seen as critical, my intent is to provide only constructive criticism.