One of the many things keeping me busy this week was our monthly trek up to our Lyme doctor in New Jersey yesterday. The first thing I said to the doctor during my part of the appointment was, "Well? Now will you pronounce me officially cured?" I quit all my Lyme medications on January 1, and at my appointment in February, he wasn't willing to commit yet.
But, yesterday, he pronounced me officially graduated from my Lyme treatment! The office even gave me a caramel-covered lollipop to celebrate :)
For those new to my blog, this celebration was a long time coming.
I have had CFS for 10 years now, since March 1, 2002. About 3 1/2 years ago, I suddenly had some new symptoms - nausea and knee pain - and I knew immediately that I had gotten Lyme disease. However, my antibody blood test came back negative (which is the case for many people with Lyme disease), and my doctor refused to give me antibiotics. A sobbing outburst followed (mine), and - to make a long story short - eventually, my doctor did agree to try antibiotics. She saw that I responded to them immediately - first with a few days of all of my symptoms disappearing, followed by a sudden worsening of symptoms (the classic herx reaction ) - and she agreed that I did have Lyme disease.
Despite her initial reaction, she is actually an excellent doctor who does understand the complexities of Lyme disease, so when my symptoms returned after quitting antibiotics after several months of treatment, she said, "I feel comfortable treating you with the standard protocol (200 mg daily of doxycycline pills) for up to 6 months, but if that doesn't work and you need something different, you will need to go see a Lyme specialist. You'll have to go out of state - there's not a single Infectious Disease doctor here who will treat Lyme disease without a positive blood test."
So, I took her advice and asked around and found a Lyme specialist about 90 minutes away, in New Jersey, who could see me and seemed to be well-respected and not an extremist. He immediately doubled my dose of doxycycline. I tried quitting antibiotics again about a year later, and again, my Lyme symptoms (mainly nausea and knee pain plus worsening CFS symptoms) returned. At that point, he began adding additional medications and supplements to my regimen, designed to get at the Lyme spirochetes (a type of bacteria similar to that which causes syphilis) that were hiding in my tissues.
Finally, this January, after 3 1/2 years of treatment, I tried stopping all Lyme meds again, and this time, it worked! At that point, I was taking an extra 28 pills a day, just for Lyme, in addition to everything I take for ME/CFS. The high-dose doxycycline caused horrible side effects, including nausea, vomiting, and extreme sun sensitivity. I was so relieved to quit all that on January 1! It is such a pleasure to be able to go outdoors without covering every millimeter of my body from the sun.
So, that's my story. It's an unusual one, since I had CFS first and then got Lyme 7 years into it. Lyme and/or its co-infections are very often misdiagnosed as CFS, and Lyme is also one of many known triggers for CFS. So, for many people, the Lyme comes first (even if they don't know it right away).
I was dismissed as a patient, but I will still be traveling to see the Lyme doctor with my 17-year old son, who has not only Lyme disease but two of its co-infections, babesia and bartonella. Jamie's case is much more complicated. He has 3 tick-borne infections, and he probably has had them for about 5 years. In his case, an early Lyme infection, 8 years ago, is probably what triggered his CFS to start, but that was caught early and treated effectively. A couple of years later, his CFS had improved dramatically with Orthostatic Intolerance (OI) treatment (as it often does), and he was doing quite well when he got Lyme again about 5 years ago. He was again treated; however, he was never tested at that time for any other tick-borne infections.
Experts say that it is impossible to get rid of Lyme completely when there are co-infections present, so we think that is what happened with him - he probably had these infections all along, but we didn't know it. He improved somewhat with standard Lyme treatment (30 days of doxycycline) but did not return to his earlier level of functioning completely. He gradually worsened over the next 5 years - very gradually so that it wasn't obvious to us at first. We thought he was dealing only with CFS.
It took some very unusual non-CFS symptoms to emerge a few years ago - especially pain in the soles of his feet and strange stretch-mark-like lines on his back - for us to finally realize he had bartonella. I took him to see my Lyme specialist, and he also tested positive for Lyme and babesia. Other new or worsening symptoms - like light sensitivity, night sweats, and worsening OI - that were due to tick infections, we had just chalked up to CFS. I forgot the Golden Rule that my family doctor is always reminding me of - "Just because you have CFS doesn't mean you can't get something else. Always check out any new or worsening symptoms."
So, now, Jamie is about 18 months into his treatment for the 3 tick-borne illnesses. Having all three for over five years makes getting rid of all those infections very difficult. He has been mostly bedridden this past year as a result of his treatment and is just now beginning to show some small signs of improvement. Even after all this time, he can still only tolerate 1 doxycycline pill every 2 days (because his body is having trouble clearing the dead bugs (i.e. toxins)), so we know he still has a long, difficult road ahead of him. But at least we are on the right track now, and my recovery gives us additional hope that some day, Jamie will be able to lead a more normal life.
I shared all these details of our struggles here because our experiences are not at all unusual. In fact, I have heard similar stories from hundreds of CFS patients over the past 10 years - people with CFS who had no idea they also had Lyme disease. Despite hearing the same story over and over, I still didn't recognize when it happened to my own son.
So, if your ME/CFS symptoms have worsened over the years instead of improving or if the standard treatments - for sleep dysfunction, for OI, for endocrine dysfunction - haven't resulted in improvement for you, then you should consider whether you might have underlying infections - either Lyme and other tick-borne infections and/or reactivated viruses. In fact, everyone diagnosed with ME/CFS should be thoroughly tested for Lyme disease AND its co-infections because they are often impossible to differentiate from CFS by symptoms alone (of course, the tests aren't very accurate, so you need to look at both test results and symptoms). Lyme has been found in all 50 states and on all continents except Antarctica, so this applies no matter where you live.