Monday, November 4, 2013

Part Fourteen: Living with Chronic Lyme Disease: a long and difficult journey

Part Fourteen: Treatment Options

I have had Lyme Disease for so long that it has affected my brain, joints, muscles, skin, bladder, heart, digestive and nervous systems. I was deteriorating and my prognosis was not good without ongoing, and more aggressive treatment. My Lyme-literate doctor decided that I needed more extensive antibiotic treatment. I improved though after treatment, my symptoms reoccurred. More treatment was prescribed in hopes to produce more kill-off of the infection that had likely mutated and hid, and again I improved, but still again my symptoms returned after discontinuing treatment.

I was then tested for co-infections that would necessitate a different sort of treatment and was found to be positive for Babesia, but not Bartonella. As stated before, with all the different strains of infections, sometimes tests don’t tell the whole story and so clinical symptoms supported further treatment for both of these co-infections. Anti-malarial, and anti-TB medications were used.

Treatment is not as straight-forward as it would seem to be. There are many sorts of treatment regimens including herbs and different antibiotic medications, rife and various mixtures of treatments known as protocols. Lyme, as stated before, has the ability to change into different forms to evade treatment, and then come out again after treatment is discontinued. So sometimes treatments are pulsated or given by IV to better attack different tick-borne disease entities in their various forms or sometimes different protocols are thought to better get at persistent strains.  “Pulsating” means to not take a treatment every day. Sometimes pulsating medications will fool such hard-to-kill-bugs to coming out of hiding, and then surprise attack them.

I am simplifying the many treatment options available. Unfortunately the word treatment is used whether a doctor is going after the infection or only treating the patient palliatively.  This is confusing for patients as one treats the cause and the other only treats the symptoms. The difference is huge, though both may be very important.

Some palliative care may make the patient feel better, but may potentially support the underlying infection to grow more and thus make the patient sicker in the long run. Steroids are notorious for this. I have been fortunate that in my palliative treatment preceding my diagnosis with Lyme, steroids were very rarely used to treat my inflammation. This isn't always avoidable in cases where inflammation is life-threatening.

I am not here to give advice as to what is the best option for all patients, but I do have to say that in my case, I would likely have deteriorated even more than what I have, had I not “lucked out” and “fell into” the care of a “Lyme-literate doctor”, though it took me thirty-eight years before finding a doctor who even considered Lyme disease behind all the medical issues I was having. My story is NOT an uncommon one.  I have since had to advocate for myself to continue finding such supportive Lyme-literate doctors.

Being a nurse and in the medical field, I have even had to step away from beloved, well-meaning, non-Lyme-literate doctor and nurse friendships and even lost credibility by openly sharing my out-of-the-mainstream Lyme treatment experiences in hopes of better educating my colleagues. I have learned the hard way that change in a traditional institution takes many decades. Medical knowledge comes at a high price and isn't easily given up for new theories and beliefs
I want others to know that long term treatment, though not particularly fun has been financially affordable and has also been less damaging than palliative care. I learned the hard way prior to being diagnosed with lyme that palliative medications prescribed by my rheumatologist made me feel worse and not better.  I am chemically sensitive and this wasn't always respected by doctors determined to make me feel better using pain, muscle relaxing, anti-depressant and anti-inflammatory medications. Sedatives of various sorts were also prescribed with great hang-over side effects.

Long term antibiotic treatment (especially the low dose ones used on the Marshall Protocol- to be discussed in a future blog) has alleviated pain, restored restful sleep without sleep medication, and has even restored function that I would not have without it and I am sad that my friends in the mainstream medical world, of which I was a part, remain closed to accepting these positive changes.

Essentially my treatment choices were “no-brainers” when I considered what was happening to my body and brain. My choices were mainstream palliative/pain and comfort care and deteriorate or continue to seek and try other alternative options, and I did what likely anyone would do with the help and direction a good Lyme-literate and caring doctor who encouraged me to continue treatment of the underlying infection.

Antibiotic treatment can cause kill-off reactions called Jarisch Herxheimer reactions and are not comfortable, yet my body could tell the difference between these tolerable but unpleasant reactions and the serious side effects caused by palliative medications that weren't eliminating the cause of my disease that my body could not tolerate.

If someone is mildly affected with lyme disease, perhaps aggressive treatment’s Herxheimer reactions would be worse than the disease, though early intervention may well eliminate the disease entirely.  I didn't have this choice.  By the time I was diagnosed and treated, I was severely ill and fighting the infection was my best hope of arresting the progression of what looked to be serious and progressive neurological decline if I did not.

I do recommend that consideration of long term antibiotic treatment be an option, at least left open, when advocating for what is best for yourself.  Even if you are challenged  income-wise and we have been off and on, one can be a careful consumer and search out affordable Lyme-literate doctors and obtain medication through special discount pharmacies. From my days in nursing I know that pharmaceutical companies will offer free medication for those in financial need, and so I encourage people to first determine what options they have for care, consider their goals (wants and needs), and then seek out affordable ways to make it happen. Even expensive specialists will sometimes discount their care to people who can’t afford it otherwise. (to be continued...)

(The illustration above is done by Hannah McMillen and the figure drawing by Sarah Kate McMillen.)

(*Caution: These blogs are not meant to be actual medical advice but rather meant only to empower others to face medical issues as equal partners with their medical providers and never give up questioning and exploring what alternatives may be available for conquering their illnesses.  Living life with a chronic illness is a daily challenge and it is my prayer that no one give up on living their life to the fullest extent possible.)