The Recovery/Recovering Stories #4
What really attracted me to Janet’s story was how multi-dimensional it was. She’s had both severe endocrine dysfunction and severe pathogen problems. Both high doses of antivirals and alternative ‘behavioral-like’ therapies like meditation and her own quest for (spiritual) wholeness have been important for her. She’s still quite ill but she’s much better than she was. The kind of multidimensional treatment approach she’s used will probably be helpful for many.
Mine is a long and complex history, but which of ours isn’t. In 1990 I was diagnosed with Hashimito’s and shortly after Fibromyalgia. I was in profound pain for 4 years with my thyroid levels going up and down, no one could regulate them. In 1995 I had three crashes, that’s how I describe them, where I couldn’t stand or even sit up for more than a few minutes. Each day I could add a few minutes to standing or walking a few more feet. After three weeks I could stand and walk for about 15 min. Then I would be exhausted.
My shoulders were very weak and if I raised my hands over my head lying down I couldn’t put them down again. I had profound memory problems and would get lost in the small town I lived in for 25 years. I had lots of word loss as well. I had fever and swollen glands at least once a week.
Neuroendocrine Immune – Tests said I had a active case of EBV (originally I had the virus in 1969 in college) and high early antibodies for HHV6. I was tested for MS, Myastheania Gravis, mixed connective tissue disease etc. I had a Dr. that suspected CFS then but said I didn’t want that official diagnosis. Finally they tested pituitary and I was found to have almost no ACTH response to dynamic testing. Thyroid levels were still erratic. I need T4 and T3. I was given a diagnosis of Pituitary deficiency. They put me on hydrocortisone and that helped some.
On Disability and Passing Out Constantly – I had to quit work in 1998 and was able to get on disability. I had a scooter and van with a lift which I could not drive due to profound fatigue. In 1999 I began to pass out after eating and had strong blood pressure drops from standing. They tested again for heart stuff, POTS which I had, and was put on florinef, which didn’t help that much. I continued passing out up to 200 times before I figured out it was blood sugar not blood volume that was causing it. Chromium I found, from European trials on blood sugar regulation, stopped the passing out.
Endocrine Meltdown – My thyroid, though, was now in the last stages of being eaten by my immune system and was swinging high to low every few weeks, passing through normal but never settling anywhere. I was tested for GH deficiency and it was low, later in 2000 I was deficient and was put on GH, estrogen and progesterone. My thyroid was gone now consumed by my body.
Things stabilized, though; I was able to do more but not much. I still had profound exhaustion after any activity, balance problems, sleep problems, memory problems etc. Dr James Jones then at National Jewish in Denver, now at the CDC working on CFS/ME, in conjunction with Dr Michael Mc Dermott chief of endocrinology at Colorado Health Sciences Hosp decided that I had CFS/ME in addition to the endocrine problems.
Valtrex – In 2006 or so I read about the trials in SF with antivirals and convinced my physician to put me on high doses of Valtrex. Slowly over a year or so I increased my ability to walk, was able to drive again, stopped needing the scooter and lift. I tried three times, a year apart, to decrease the Valtrex but each time in 10-13 days the EBV would flare and I would be right back where I was before I started it.
I still can’t do too much, I can’t do anything every day, can’t work, still have to rest several hours a day. I tried Tai Chi and was down for a week each time. So I still clearly have limits, I can’t even remotely keep up with normal people.
But in my world I have kind of a life back. I can go to the store by myself, cook meals, clean house in small increments, watch my grandchildren for short periods of time. I can even shovel snow, but I pay for it in migraines and pain and fatigue for several days. Actually I pay for all my activity, but I still push to do what I can tolerate.
So it is really the Valtrex that has helped me get some sort of life back. It isn’t a cure but it does keep the EBV at bay until we find something better. I haven’t tested for the retro virus, but I will when the price comes down. I think it was the extreme physical stress on my body from the thyroid and pituitary problems going unregulated for so long, that triggered the old viruses (EBV and HHV6) that started the CFS/ME. But who knows!
I tried everything from crystals, magnets and light therapy, acupuncture for two years ( a physician later said you have to have energy to move energy), homeopathy, removing all the metal from my teeth, cranio sacral therapy, hypnosis, physical therapy, to the Mayo clinic (which I wouldn’t recommend to anyone).
Being at the high end of my range is great and I am happy and grateful most of the time. I always took a problem solving attitude with all of this and so have been relatively optimistic the whole time, other than a day or so here and there, usually in response to physicians who don’t believe me. I have learned much from being sick, about endocrinology (I know more than most physicians), about slowing down, going within, doing through being, about evolving my own consciousness, things I probably wouldn’t have learned without this path.
It isn’t that I don’t recognize that I’m ill and have very limited abilities and freedoms. I realize it fully. I also realize that I may not get any better; that this is the way my life has been since I was 40 and it may well continue this way until the end. But I never give up hope that things can change for the better, that I might be able to get well and walk and work and play and garden and do all those things I love. I keep this hope at the center, then I also do little things that give me joy each day. This way most of my time each day is spent in things that give me joy and peace.
I also know that things can change for the worse, so I appreciate each day and all the little things that give me joy. This is how I stay positive and happy in the face of such limitations. It is a fine line between acceptance of reality and hope for a better future. I am also finding that it is an attitude that can be applied to many situations besides my own.
I asked Janet if she was still on the Valtrex? And what Dr. Jones thought of her antiviral treatment?
I’m still on three grams of Valtrex per day – very expensive. I have been on it for the last 4 years, and I can’t decrease or go off. My physician has since put at least one other person on it due to my experience with it. I haven’t tried other antivirals.
I discovered this long after Jones went to the CDC and I moved to Oregon. Jones’s theory back then was that some people who get EBV have a change in their DNA. His work sounded to me something like what the XMRV retrovirus does. I have parts of papers he wrote around 2002 Immunovirology of Epstein-Barr Virus and Other Herpes Viruses and Pathophysiology of the Chronic Fatigue Syndrome.
Since I am engaged in trying to ‘slow down’ my system I asked her what she meant by ‘slowing down’ and ‘going within’.
The easiest way to slow down and go within is to take a few (2 to 3) deep breaths and let each out slowly. Breathe from the belly. Then when you feel your shoulder drop and the tension ease think of a something that fills you with love, joy or gratitude like a person you love, or an animal friend, a place in nature that fills you with beauty and awe (a great sunset can work), a piece of music that fills you with the wonder of its beauty, something you are really grateful for, baby people or animals that make you smile all over, something that you do or did once that filled you with great joy. Anything that brings the emotions of love, or joy, or gratitude. Let this permeate you for a few minutes.
If you do this several times a day and before going to sleep; It helps teach your mind and body to slow down, to appreciate small things, to change your chemical and electromagnetic body responses, which is healing. Check out the Heart Math solution for more detailed body physiology. The more you do this the more you train your body and mind and can then apply it in stressful situations. It is a very healing thing to do on a regular basis if for no other reason, and it feels great.
Success – One of the things we tossed around in my small group that struck us all is asking the question: what is success to you? For each of us it was different but in defining it, we were able to overcome much of the angst about what we had or had not been able to accomplish in our lives. For me success is defined as 1) am I doing something that is meaningful to me? 2) Does it make the world a better place in large or small ways? 3) Does it help me to make meaningful intimate connections, does it provide intimacy? (being raised in a family devoid of that, I want that in my life.)
So I suppose while effectiveness is nice and a joy to see, it isn’t essential to success for me. I can put out intentions for a better world, and for me it is already successful because of the intimacy involved, because of the love and joy I feel. It isn’t tied to a result.
When we meet our edge and realize it, we can stop, breathe, and acknowledge where we are, let the anxiety go, problem solve as best we can, then step forward into action if it is required. No need to berate the flower for being what it is. Action can be actual physical action, but it can also be doing through being.
(headings added by Cort)