May 2011 ME Story: Renee

I began having periodic symptoms of Chronic Fatigue Syndrome as far back as 1978 and in 1979 was told by one doctor that I had mono like illness.

I would be sick a couple of times a year for several weeks each time, and then resume my normal life. Eventually the episodes of illness became longer with shorter times of wellness in between.

This slow onset of ME/CFS was complicated by the development of food and environmental allergies and sensitivities.

In 1984 I was bit by a tick and the area became infected after we removed it. That tick gave me Lyme Disease, and the co-infections Ehrlichia, Bartonella, and Babesiosis.

Unfortunately, we had no clue that I had Lyme so it went undiagnosed for 23 years.

In 1985 I began to have major symptoms of arthritis and fatigue. I was diagnosed with arthritis of the bone by a Rheumatologist along with an autoimmune thyroid disease, both of which I was treated for.

Symptoms continued to wax and wane in intensity until March of 1991 when I came down with a flu…which never went away. I was mostly bedridden for 9 months with several disabling symptoms.

I was unable to get answers from the local doctors so we went to Mayo Clinic in July of that same year and the team of doctors I saw gave me conflicting reports.

The Rheumatologist told me I was extremely sick and to keep seeing a specialist because he felt it was just a matter of time before I would be diagnosed with Lupus.

The internal medicine doctor wrote in my report that I had some kind of chronic fatigue syndrome and if I would learn to manage my stress it would all go away.

I went through a battery of tests, but I was never tested for Lyme.

I did go back home and go into therapy because I wanted to make sure I did everything possible to get well. The therapy was helpful, but after several weeks of therapy and psychological testing, the therapist told me that I was “really sick” with a physical illness and not to give up trying to find the answer to my health problems.

This was my first medical affirmation that I had a real disease.

Through friends I was put in touch with a wonderful chiropractor who not only helped me regain my strength, but confirmed what he felt was a diagnosis of CFS. Over the months I seemed to recover, and went right back to my “old life” ~ within 4 weeks I was very ill once again.

Then in 1993 I started seeing a European trained doctor who practiced as a naturopath. For over 7 years she worked with me using homeopathy, herbs and vitamins, acupuncture, and allergy treatments, bringing my health levels back to about 60%. It was a slow process, but I regained strength and stamina, and could tolerate more foods.

In 1999 we moved to a beautiful home on the edge of town where the woods were only a few yards away.  It was nature at its best while still living in town.

Unfortunately, it is believed I was re-infected sometime in 2001 by another Lyme tick.

Shortly after, my health took a nose dive and I ended up homebound and sofabound most of the time.

In 2004 we moved away from the woods and across town, hoping this home would bring me better health, but I only got worse as time passed.

Over the years I saw neurologists, rheumatologists, internal medicine and infectious disease doctors, and cardiologists without much help.

By 2004 I had given up on western doctors and my naturopath had moved to Boston so I was no longer getting treatments. Massage helped the pain for several years, but my energy was still very limited and I seemed to slowly be getting worse and worse.

I stopped going to family functions  – rest and isolation were my coping tools, but it did not improve my level of function.

In 2006 a friend I had met through a newsletter I once published, was diagnosed with Lyme Disease. She had been getting treatment for ME/CFS for nearly 20 years and was also homebound and very ill. When the CFS/ME specialist told her she felt that she had undiagnosed Lyme, she saw a Lyme specialist in New York who diagnosed her with Lyme.

My friend was sure that I also had Lyme. At her insistence I eventually searched out a Lyme Literate Doctor.

Through a referral I was able to find a Lyme doctor who also treated people for CFS/ME and MCS. I did not expect her to find Lyme.

In early May we headed out. Joel made a bed for me in the back of our van and I rode lying down to her office just 3 hours away.

My first appointment with her took 4 hours. She examined me, went over all my history, and took 19 vials of blood.

We received a thick pile of test results in the mail, and I can remember being shocked as I read my diagnosis: CFS and Late Stage Neurological Lyme Disease.

I took antibiotics for nearly 3 years seeing some improvement, and have now been on herbal antibiotics for 9 months.  MY progress has been like a slow dance. Two steps forward and often 3 back.

My LLMD practices Integrative Medicine and believes in treating the whole person: mind, body and soul.  I agree with her wholeheartedly.

I use NAET allergy and sensitivity treatments that are strengthening my body, and helping me to tolerate more foods and exposures to chemicals. I also use EFT (Emotional Freedom Techniques) and the releasing for trapped emotions (Dr. Bradley Nelson~ The Emotion Code) to unblock the trapped energy in my body.

All the above has helped improve my health, as well as have given my body a better opportunity to heal itself.

Meditation/visualization and journaling help me center myself and combat the anxiety and adrenal dysfunction.

Living with ME/CFS, Lyme, MCS, and a cancer diagnosis has been challenging, but it has also presented me with many blessings.

I belong to an email support group that helps me to manage my CFS and all the symptoms that come with that.

Blogging also keeps me connected to others who truly understand, my writing brings me great joy and purpose.

My family and friends are sources of great joy for me.  My husband of 42 years is my champion and the love of my life.

The past twenty-seven years of poor health have taken their toll on us both, (he also is battling Lyme Disease), but we have also become stronger because of this journey we are on.

And that brings me to the very core of what keeps me moving forward ~ my faith. I am closer to my Lord because of my illnesses, and through all this and more, I rely on God for the strength and wisdom I need on a daily basis.

Each day is a gift for us to open and enjoy!

Acts 2:26 shares the Psalmist David’s words that I now claim for my own.  “I have pitched my tent in the land of hope!”

Renee

You can check out Renee’s blog, Renee’s Reflections, here.

***Posted (with permission) by Dominique and Written by Renee Dahlen

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