Friday, October 11, 2013


A quilt block from my Comfort-Her.
My lower left leg is red, swollen and tender to touch. Such things happen on my treatment that I will explain in one of my blog series on Living with Chronic Lyme Disease. By design of my treatment, inflammation runs high and can produce rashes and reactions that are otherwise inexplicable. I am worried and normally would seek medical attention, but the doctor with expertise in this long term medical protocol was forced to “dump out his Chronic Lyme patients” and I am one of his “dumpees”. I found a doctor who will prescribe the needed medication and oversee my care, but he has made it clear, that he has little experience with this treatment.

There is an information line on the internet for patients following this unusual protocol and I can consult with moderators, but having been on this program for almost five years, I already know my options. Beyond increasing the medication that I normally take on this protocol, there is really nothing that can be done beyond some very basic nursing care without being prescribed another antibiotic that can add more risk, especially if done by a doctor that isn't familiar with how to handle such medical issues with this protocol. As a patient, I am forewarned NOT to take my day-to-day-management issues to the ER. Regular doctors are not familiar with this protocol and can accidentally kill me by giving me meds that are NOT appropriate. We are also warned that all medications can be potentiated by this treatment and can cause lethal  reactions.

I thought I was in control of my reactions until I had a stroke while on the third year of treatment, caused by severe inflammation likely around an already existing brain lesion, and within minutes I went from feeling fine to not being able to move my left arm, hands or fingers.  I waited to let this Herxheimer reaction pass.  When it did not pass but worsened, I reported to the ER.  My diagnosis was correct, as was the ER doctor's.  I had had a stroke, but it was not due to a bleed or a clot and it did pass with the excessive inflammation, and my recovery was like that of a severe Herxheimer reaction, though it took a couple of weeks to fully recover. I was lucky.

This treatment is not without risks and I know them, but like most, I hope I will NOT be the one to experience them.  Heart attack, strokes or any such acute inflammatory response severe enough to be life threatening or permanently damaging is to be avoided by rearranging the meds you are given to dampen down the inflammation and keep it from becoming extreme.  It is easier said than done, especially as I am no longer on the pulsating antibiotic regime and have entered into a Late Stage Five that in a few patients can bring on an "over-exuberant inflammatory response" almost instantly.

Medical research has decided that one of the antibiotics used with some in this treatment likely suppressed our immune systems, so much so that they now use it with patients that have undergone organ transplants. It keeps their bodies from rejecting their new foreign organs.  For the few of us who were prescribed this medication, on a long term basis, we must go through a time where our immune cells regenerate and come back to life but doing so means that it functions erratically, producing these over-exuberant inflammatory responses.

It is nice to know why this is happening, but managing these erratic reactions is anything but easy. I don’t think we manage it, but rather, I think  it manages us, forcing us to stop, and take extreme care. On this protocol we normally control our reactions in one of three ways: reduce exposure to light (all kinds, but sunlight especially as this alters our Vit D levels and immune response), increase our anti-inflammatory medication, though hitting a balance is key as it also drives our Vit D levels lower and so can increase our immune response too; and through our diet, being careful to eliminate anything that might increase inflammation. For people with hyper-sensitive guts, and most of us that have been treated long term fall into this category, this too is harder than it seems. Most of us have “leaky guts” from being on so many high powered antibiotics that have damaged our natural bacterial flora in our digestive tracts, which often makes us react to everything.

Back to my rashes and reactions and the one that I am experiencing right now. It is clear to me that inflammatory responses that permanently damage tissues can be very serious indeed. This is not a comforting thought and I ponder what to do. My regular doctor gets very uncomfortable seeing me, as this treatment is out of her scope of practice.  I am appreciative that she knows her limits. She does not scoff, as many doctors do at this treatment, but has made it clear that with the risks that go with this treatment I really need a specialist doctor that has much experience with this treatment. Many of the immune responses I have are such that any doctor would be concerned enough to treat, though most are "self-limiting" and pass with a bit of time and, except for the extreme responses, are all part of how my body kills off the mutated bacteria that have escaped with other forms of treatment. Finding an experienced doctor with this particular medical protocol is like looking for a needle in a haystack and my search is continuing.

Meanwhile, acting as my own doctor/nurse, I am keenly aware that there are no guarantees in life. Sometimes having faith in the treatment involves sticking to the course, being cautious and proceeding carefully. I am taking risks with this treatment, but I have already failed previous more conventional hard-line treatment approaches. I share my risk with my doctors though I take full responsibility for all that happens to me. There are no easy answers and I have chosen this course of treatment. I continue to grieve for the loss of my doctor who is no longer allowed to continue treating Chronic Lyme Patients.  This is part of what we who have Chronic Lyme go through to get the care that we need.  I am lucky that I am a nurse and well-educated in my treatment, though it is no substitute for having an expert doctor to lead me.

“First do no harm” is the all-guiding maxim in medicine, but those of us that practice medicine,privately on ourselves or by profession, must accept that there are gray areas of treatment, where without pain, there will be no gain and carefully weigh the potential gains with the risks.  To live in remission of lyme infection is a reality that I can scarcely grasp but continue to dream about. Even to arrest it will be nothing short of a miracle.  It is happening for many and to this end I will persist until my body lets me and my doctors know otherwise. As in all serious matters, I hope and pray as I continue to watch and carefully assess what is happening with my leg.

I am grateful for my BS degree in nursing and am doing the usual things, keeping it elevated and taking more anti-inflammatory meds, and following other aspects of my treatment. I am grateful for this treatment that gives me a chance of living my life without lyme disease after having it for so many years, though "the jury is still out" regarding the outcome of this risky treatment. Life is indeed precious and overcoming obstacles, medical or otherwise is just part of living life to the fullest!


  1. This week Katie Couric had a segment of her show on Lyme's Disease. She had specialists on the disease and people dealing with it. I immediately thought of you. I'm sure if you looked up her show it would list the specialists. This disease is ridiculous and horrific. Take care.

  2. This illness is horrific to be sure! Specialists are out there, though many don't take insurance and can cost anywhere from $300-$600/visit out of pocket. Fewer are the ones that do the protocol that I am on unfortunately and I was in the middle of it when I lost my doctor. I have a prescribing doc, but he doesn't have experience, much less with someone having complications...It is what it is. I seem to be improving slowly...I am appreciative of your interest in Lyme. Spread the word as acceptance in the medical world will help us insurance wise as well as in research. What will help us, will benefit others with sister sorts of illnesses! Thank you! jane

  3. Jane, I will spread the word .... and glad to hear you are slowly improving. It's hard to believe that some of the specialists won't accept insurance ... but then again it isn't. I'll keep you in my thoughts and prayers and continue to read your blog.