Connie White has helped over thirty people with Lyme Disease win their cases. She was kind enough to share with us all these guidelines she gives to physicians. A sample letter is at the bottom.
Guidelines for Use in Writing Letters in Support of Social Security Benefits for Patients With Tick-borne Diseases
General principles of focus to consider when preparing this report:
- The report/letter must have a longitudinal perspective that allows Disability Determination Services (DDS) to see the frequency, duration, and recurrence of major symptoms of tick-borne diseases. Medical records will generally show this, but a letter needs to state the general course of disability thus far, as well as the projected length of the disabling condition.
- The report/letter must include descriptions of all treatment regimens and responses to therapy must be given. For example, oral antibiotics, and general response. Did this result in limited improvement, which necessitated the initiation of intravenous therapy?
- The report/letter must include any significant restrictions the patient has experienced in his/her normal activities since the onset of the diseases. Here, we are asking the physician to describe changes in lifestyle, such as household, personal care, and social activities, as may be determined through history. Also, the physician can report any observed limitations such as walking, climbing, etc. as the patient functions in the exam room. A “Incapacity Checklist” can be helpful, and the physician can have the patient complete this for reference before the support letter is written. (A copy is at the end of this document). The patient needs to provide specific examples of limitations in function, which the doctor can document in the letter. The advocate can then obtain supporting statements from others (friends, family) to confirm what the patient has reported to the doctor.
- The report/letter must report on any objective testing which has been done to determine the appropriate diagnosis. For example, any positive lab studies, and other supporting evidence such as positive SPECT scan results, positive findings of joint inflammation on x-rays, etc. Any testing which supports the presence of illness is acceptable. Includes the clinical examination, not just lab studies.
Once the above is established, the physician must then identify and describe the most significant and disabling symptoms frequently associated with Tick Born Diseases. For example:
- Fatigue – the existence of chronic and/or recurrent debilitating tiredness, which is demonstrated by an inability to perform basic minimal tasks of daily living (ADLs).
- Neuropsychological – the existence of forgetfulness and distractability, inability to concentrate, memory impairments, confusion, difficulty thinking, photophobia
- Neurological – numbness and tingling, sensory impairment.
- Pain – recurrent and chronic pain which significantly impedes the performance of ADLs and unrelieved by prescribed treatment. Location of such pain and any objective findings utilized to diagnose the origin of such pain. This includes chronic headaches and myalgia.
- Sleep disorder – Any disruption of normal sleep patterns that is recurrent and does not respond to treatment.
- Depression – Is depression primary or secondary? Is it related to the patient’s reaction to the daily physical symptoms? Are there other psychiatric symptoms present which are apparent to the physician?
- Cardiac – heart block, hypertension, other cardiac complications.
Please be advised that I have provided medical care for Ms. Blank since ___/___/___. Ms. Blank carries a diagnosis of persistent Lyme Disease made on the basis of a number of clinical features, including marked fatigue, chronic relapsing pain, CNS irritability, nonrestorative sleep and severe cognitive dysfunction. This patient is disabled by incapacitating fatigue and myalgias aggravated by repetitive or sustained physical activities.
Her symptoms are consistent with her disease, which has been confirmed by positive IgM Western Blot on ___/___/___. There is also evidence on examination of persistent disorganization of motor function as evidenced by peripheral nerve dysfunction. She frequently becomes confused during discussion of treatment recommendations, and must rely on others to insure she has information she needs to proceed with recommended treatment.
Ms. Blank has had marked impairment of her daily activities and finds it difficult to get out of bed on most days. She routinely requires assistance with showering and dressing. She uses a cane for ambulation. She cannot stand for more than 5 minutes to prepare meals, and must obtain assistance from others. She cannot lift or carry dishes or a gallon of milk. She cannot vacuum or mop or garden. She is unable to do laundry.
She has difficulty managing her medication and must receive assistance from others to make sure she takes the recommended medications at the recommended times. She has difficulty getting in and out of a car and is unable to drive due to cognitive dysfunction.
Ms. Blank has been treated vigorously with oral antibiotics as well as supplements and other supportive care. There has been limited improvement thus far, and therapy with intravenous antibiotics is recommended for the near future.
By reason of the unpredictability of the frequency of her multiple physical symptoms, Ms. Blank has been totally and permanently disabled from engaging in, and more importantly, in sustaining any gainful employment activity, even light part-time sedentary work at home. Ms.Blank’s status has been consistent since I first began seeing her.
It is my opinion that she is likely to remain disabled for the foreseeable future, but, in any event, for not less than 12 consecutive months.
Prognosis remains guarded and uncertain.
Signature: _________________________________Date: _________________
How does your condition affect:
- Your daily activities
- Your ability to stand, sit or walk for a long period
- Your ability to lift or carry weight
- Your ability to understand, carry out, and remember instructions
- Your ability to respond appropriately to your supervisor and coworkers
- Other physical or psychological functional restrictions
- Your ability to adjust to the stress of a work environment