Can't Seem to Complete Lyme Provocation Test

In a video post from April, I explained that my new doctor believes I have chronic Lyme disease, but the results of a Stonybrook Lyme test were inconclusive.  As a result, she (Dr. M) wanted me to conduct a Lyme "provocation" test, in which I take an herbal supplement (called A-L Complex), which is supposed to stimulate the immune system to kill the Lyme-causing borrelia bacteria. Apparently, after the immune system kills some of these borrelia, the Lyme blood tests are more likely to detect the presence of the borrelia (because live borrelia are adept at hiding.)

My instructions were to begin taking the A-L Complex starting with 3 drops per day, then, three days later, increase to 6.  Then, three days later, up to 9, and so on up to 20 per day.  After I reach the 20-per day dosage, I was supposed to repeat the Lyme test.

The problem is that even 3 drops per day made me feel awful--brain fog, headache, muscle pains.  So, on my own, I reduced the dose to a mere one drop per day, and still felt terrible.  (It's interesting that the directions on the bottle of A-L Complex instruct the user to take only 2 drops per week.  We're going way off-label here.)

Over the last month or two, I've continued to experiment with fractional doses, hoping that I could find a way to slowly titrate to 20 drops per day.  As it stands now, I don't see how I will ever be able to make it to 20.  I can't even handle 1.  Granted, I'm being a little bit of a baby about this.  I could do it if I really needed, but it would be near impossible to keep up with my home and work responsibilities at the same time.  So I'm trying to figure out my next step.  I either have to set aside a month in which I reduce my responsibilities and devote myself to titrating and testing, or return to my doctor and admit failure.  I could ask my doctor if there's a "Plan B"--perhaps using antibiotics instead of A-L Complex.  (Antibiotics are, I believe, the standard for Lyme provocation tests, but I originally declined.)   Or perhaps my reaction to A-L Complex is evidence enough that I am dealing with Lyme?

My new headache symptoms - another clue

I've figured out what this new headache symptom is about.  Since my last blog post, in which I wrote about recent headaches, these new headaches have come and gone every five or six days.  They usually last about 2 days.  

My first clue to their origin was that these headaches are accompanied by a tremendous tightening in my shoulders and neck.  This is not the typical tension seen in people who spend large blocks of time in desk chairs.  I've experienced that lesser tension all of my adult life -- it is a minor annoyance.  This is something entirely different.  The tension in my neck and shoulder muscles is easily palpable to myself and others.  At onset, over the course of an hour, knots the size of grapes form in my shoulder muscles.

A legal assistant in my office is a long-time sufferer of tension headaches.  She states that I'm suffering classic tension headache symptoms.  Apparently tension headaches start in the shoulders and neck.  These muscles, in turn, pull on the muscles connected to the top of the skull, producing a headache.  When she explained this, the proverbial light bulb went on.  A little Googling confirmed her assessment.

Why, then, after four years of ME/CFS, has this new symptom emerged?  What I believe is happening is the inflammation that is a hallmark of this disease has taken up occasional residence in a new part of my body. At the risk of oversimplifying this complex disease, it has always been a matter of inflammation (possibly from cytokine "storms") forming in different parts of my body.  When it would hit my groin, I'd feel groin pain.  Kidneys; kidney pain.  Lungs; shortness of breath.  Brain; brain fog.  Etc.

I believe that now, for unknown reasons, the inflammation has started to attack my shoulders and neck.  This results in tension headaches.  I'm actually OK with this as long as the net inflammation in my body isn't increasing.  If the inflammation is hitting my shoulders because it has "left" another part of my body, I can live with that.  I haven't had true groin pain since about February, so perhaps the cytokine storms have moved on?  Joke if you will about the troglodytic nature of men, but I'd rather have the headaches than the groin paid.

[When this new symptom first appeared in the week before my vacation, it was accompanied by brain fog and swollen lymph nodes.  Since then, the brain fog has not been a part of it, and the glandular swelling, only a little.  I think the contemporaneity of the brain fog during that week was coincidence.]