The Massachusetts CFIDS/ME & FM Association, a 501(c)3 founded in 1985, exists to meet the needs of patients with CFIDS (Chronic Fatigue and Immune Dysfunction Syndrome, also known as Chronic Fatigue Syndrome), ME (Myalgic Encephalomyelitis) or FM (Fibromyalgia), their families and loved ones. The Massachusetts CFIDS/ME & FM Association works to educate health-care providers and the general public regarding these severely-disabling physical illnesses. We also support patients and their families and advocate for more effective treatment and research.
- Last Updated: 12 November 2015 12 November 2015
by Terri Reiser
(Editor's note: In this 2009 article, Terri shares her journey from a diagnosis of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) to a diagnosis of Lyme disease. An interview with her Lyme disease specialist follows.)
About nine years ago I began to experience symptoms that I now know fit the profile for Lyme disease. I was working and living in Germany and had been for several years. I lived in a rural area and spent a lot of time outside hiking and walking my dog. I had a very stressful job and just thought that the symptoms I had were due to stress.
I was constantly feeling as if I had the flu. I would run low-grade temperatures, and by the last year I was there I had profound fatigue, frequent headaches, severe panic attacks and what I now know is Bell's palsy. My husband and I also went through several miscarriages.
By the time I had resigned my position, I could barely make arrangements to fly home to Florida. I was also soon pregnant with my daughter. (A year after she was born, I found myself divorced.) I thought that a climate change would solve some of the stressful problems that I had. My daughter and I moved up here to Cape Cod, where we have been for the past 7 years. I was lucky to find a terrific family physician, Dr. Barry Conant. I did not know that he and his family nurse practitioner, Beth McGarry, would become so important to my little family.
Over the course of the next few years I continued to experience more and more symptoms of fatigue, joint and knee pain, and headaches. I did have sinus surgery for sinus disease and a deviated septum that was expected to cure the problem. It has helped my sinuses, but my other symptoms got worse after the surgery. I never really recovered from it and became very ill.
My fatigue was overwhelming. I began the usual regimen of cures—yeast-free diet, mega-vitamin therapy, increased salt, more rest, more exercise, less exercise, melatonin. You all know the hoops we jump through.
I was tested right away for Lyme disease. In fact, I was tested throughout the next several years a total of 7 times. All the tests were for Lyme titers, and all were negative. Three different physicians diagnosed me with CFIDS/ME. I also was continuing to suffer from sinus infections and began to notice that when I was put on a regimen of Zithromax or Doxycycline or Biaxin, that by the end often in fourteen days, I felt better. The fog lifted. After several cycles of this, my doctor continued to keep me on Biaxin.
During the following year, I continued to slowly improve. I never told my doctor how bad my symptoms actually had been. I was just too afraid. I had such intense weakness and muscle spasms that I would fall down. One of the most frightening events was during a time when I had gone off medication. I pulled a hot frying pan out of the oven with my bare hands, warned my daughter not to touch it, and then moved it to the back burner. I did not feel the burn.
I then resumed taking Biaxin, and soon improved, only to have to go off of it for some other treatment. I hit bottom quickly. Within five days I was unable to get out of bed, I was unaware of being awake or asleep, and I had hallucinations.
I called my doctor, who put me back on the Biaxin and told me he thought I had Lyme disease. I could not believe that I did, as I had never pulled a tick off of me or had a bull's-eye rash. I did not know that the symptoms I was experiencing were those of Lyme disease.
I was then referred to a Lyme disease specialist, Dr. Donta, and he ordered a Western-blot test and brain SPECT. Before the results were in, which were overwhelmingly positive, Dr. Donta made a clinical diagnosis of Lyme disease and added Plaquenil to the Biaxin. At that point I experienced what is called a Jarisch-Herxheimer reaction, when you feel worse before you get better.
I was then in bed for two weeks in a lot of pain, but woke up one day and felt great for the next three weeks. I was able to travel to Florida and I was even able to do most of the driving. After a hike, my daughter and I each picked off five or six deer ticks off our clothing.
By this time I was well aware that spraying with a good tick spray containing DEET is essential, along with other protective measures to repel ticks. I now have tick spray available wherever we go. I make sure our cat is treated to prevent ticks being brought into the home and also so he won't get Lyme disease.
After a few months of treatment, I began to feel much better and kept getting better. During this time I realized that my daughter had been complaining of knee pain, and light sensitivity, was sick with sinus infections and sore throats, and was emotionally unable to handle much stress. During our first few years on the Cape there had been several deer ticks removed from her and she was given a prophylactic course of antibiotics.
We now know that this short treatment is usually not going to take care of Lyme disease. She is now under longer-term treatment for Lyme disease and is doing much better with a reduced school day, compliance in taking her medications, and more rest.
I continued the antibiotic and Plaquenil therapy for a year, at which time some symptoms that had disappeared returned. I did not experience the usual cyclical improvement and worsening of symptoms. At this point Dr. Donta changed my medication to tetracycline and I experienced another Herxheimer reaction that lasted about six weeks. Again, I woke up a few Saturdays ago and have felt pretty good since then.
I had to make changes in my lifestyle when I became ill and have had to continue to make changes. I know what I can do, how much of it I can do, and I work with a therapist to deal with illness-management issues. I am now a member of the human race again, but not the superwoman I was many years ago.
With that change has come a great understanding and appreciation for people with CFIDS/ME, Lyme disease, Fibromyalgia (FM), and brain injuries and infections. We all share so many of the same symptoms. We all have to go through such a trial, and we have no dream team to represent us. If we are lucky, we find a physician who takes the time to become "Lyme literate." Such was the good fortune that I have had.
I thought it would be a good idea for people with CFIDS to have correct and accurate testing done for Lyme disease, so I interviewed Dr. Donta (see interview below). If you have not had a Western-blot test done, you should.
Keep an open mind, use the resources listed, and go for one more test. I had almost every single symptom of CFIDS/ME that I ever read or heard about, yet I found out I have Lyme disease.
P.S. I wish all of us good luck in our treatments and in our outlook for the future. I believe there is a specialness about us beyond our illnesses, and we have to discover what that is and hang on tight to it. Whether it is your talent, your parenting, your faith or your ability to help another, use that to hang on. When I hit bottom again, and I will, I will read this paragraph, and hope that this information will help someone. I want to thank my healthcare professionals and their staff for all of their help, time and patience not only for myself, but for all of us with these particular health issues.
For further information contact:
Lyme disease Foundation
1 Financial Plaza, 18th Floor
Hartford, CT 06103
National Hotline: 800-886-LYME
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Notice about names
The Massachusetts CFIDS/ME & FM Association would like to clarify the use of the various acronyms for Chronic Fatigue Syndrome (CFS), Chronic Fatigue & Immune Dysfunction Syndrome (CFIDS) and Myalgic Encephalomyelitis (ME) on this site. When we generate our own articles on the illness, we will refer to it as ME/CFS, the term now generally used in the United States. When we are reporting on someone else’s report, we will use the term they use. The National Institutes of Health (NIH) are currently using ME/CFS. The Centers for Disease Control and Prevention (CDC) are calling the illness CFS.
Until there is consensus on a name for the illness, the Massachusetts CFIDS/ME & FM Association name will not change.