I had my second appointment with my doctor on March 20.  We were able to go over the tests I have taken so far, adjust my medication, and discuss anything else I has questions about.

My legal name is Sandra Eileen Jacobs, so any direct quotes and scans of my medical information will refer to me by that name.

When my doctor went over my co-infection and secondary-infections tests, I was very lucky.  Some people have a dozen, or even a couple dozen positive results on that battery of tests, but I came back with only three positives.  Even better, two of the positives showed that I had been exposed, but do not currently have an active infection.  That means I effectively only have a single secondary infection (the Mycoplasma) to worry about, which greatly reduces the potential complications involved in the antibiotic treatment.

We also discussed the summary results of the Cardiopulmonary Exercise Test I took last month.

About the proceedure:

“The patient performed symptom limited 15 W/min ramping protocols on a bicycle ergometer while expired gases were collected for determination of oxygen consumption, carbon dioxide production and pulmonary ventilation.  Two exercise tests were performed on consecutive days.  The heart rate, blood pressure and arterial oxygen saturation were assessed throughout the tests.  Pulmonary function testing was performed before the exercise tests to establish baseline resting values.  Appropriate measures were taken to calibrate and test the accuracy and reliability of the testing equipment on both days.  These tests were performed to determine functional capacity and assess the recovery response to a standardized physical stressor.

“In the fields of exercise science and medicine, cariopulmonary exercise testing (CPET) is considered the gold standard for measuring and evaluating functional capacity and fatigue.  Position statements and/or guidelines for the performance of this testing are available from the American College of Sports Medicine, American Heart Association, American College of Chest Physicians, American Thoracic Society and the American Medical Association, among others.  All endorse this method of testing and acknowledge peak oxygen consumption, only available with CPET, as the most accurate measurement of functional capacity.  Workwell Foundation has adopted this standardized, reliable and accurate tool to evaluate disability in fatigue-related disorders.”

The summary conclusion was:

“The patient’s early onset of the ventilatory/anaerobic threshold* and low work capacity at that threshold points to significant metabolic impairment.  Ms. Jacobs’ ventilatory/anaerobic threshold of between 9 and 10 ml kg^-1 min^-1 indicates that even low-level physical activity will demand more energy than can be aerobically generated.  With values adjusted for her gender, age, height and weight, oxygen demands for everyday tasks such as washing/dressing, grocery shopping, preparing a meal and sweeping floors fall in the range of 8.33 to 14.58 ml kg^-1 min^-1.  Merely engaging in normal activities of daily living will demand more energy than Ms. Jacobs is able to generate aerobically.  Performing such tasks on a consistent basis is a challenge that will likely precipitate the onset/exacerbation of symptoms, including excessive fatigue and pain.  This is both a demonstration of physical impairment and a quantifiable limitation of her ability to function in a work environment.”

“* The ventilatory/anaerobic threshold is an important index of the amount of work that can be sustained.  Work intensities above ventilatory/anaerobic threshold require energy production derived from anaerobic sources limiting the duration at which such intensities of effort can be maintained, causing cumulative fatigue and extending recovery time.  Most activities of daily living (reading, walking at a normal pace, computer use, office-type work, etc.) are aerobic in nature and healthy individuals are able to perform such activities for prolonged periods of time with no meaningful physical fatigue.  If the ventilatory/anaerobic threshold occurs at low oxygen consumption, normal daily activities may exceed the energy demands that can be met through oxidative metabolism, thus requiring anaerobic metabolism to provide energy.  This results in early onset fatigue and prolonged recovery.”

As horrible as the conclusion is, I’m grateful to have confirmation of the realities of my disability and managing the basics of day-to-day life.

My doctor and I went over my symptoms, checking for improvements or continued worsening of problems, and discussed the new symptoms that have started since I last saw her.  My digestive symptoms have improved significantly, but not as much as she wants, so she doubled the dosage of the “Galt Repair”.  That means I’m taking 12 gelcaps every day.

She also wants me to start taking a supplement called “Trifortify”, which is for detoxification and additional immune support.

Since I have seen little to no improvement in my sleep disturbance, sensory disturbance, and energy levels, she has prescribed B12 shots.  Initially she said to take three shots per week, but then we started discussing my new symptoms and went into my neurological symptoms in greater detail.  For the most part my neurological symptoms have stayed the same, or continued to get worse.  Then last Saturday I passed out for a minute for no apparent reason.  One moment I was walking across my room, and the next I was on the floor staring open-eyed at the window.  So, instead she wants me to take B12 shots five times a week.  I’ll let you guys know the cost of that one after I pick up my prescription.

That brings me to the bad news of the doctor visit.  Given the continuing severity of the neurological symptoms, and that I am still developing new symptoms, she wants me to get an MRI of my brain.  She’s worried I may have one of the scarier potential symptoms of lyme disease – lesions on the brain.  Frankly, because of the seizures I had wondered about that for a few months, but I figured there wasn’t anything that could be done about that in particular.  She was emphatic enough about getting the MRI as soon as possible that I’m hopeful there might be something she can do.

The last task of the day was getting my blood drawn for two tests.  We’re checking my thyroid function, and also one other thing, but I can’t remember exactly what it was.  I’ll let you guys know when I get the results back.

There’s also still no telling when I’ll be able to start the antibiotics, or how long I’ll be on them.

So, overall it’s a mixed bag, but fighting lyme disease is never easy, and I have a long road ahead of me.  As long as I keep putting one foot in front of the other, I’ll eventually get there.