The End of a Search, The Beginning of a Journey

So many turbulent emotions are coursing through me today after the follow up consultation with my new doctor yesterday. As we went through the results of numerous lab tests, I felt a myriad of things: vindication, anger, frustration, relief, sadness, gratefulness and hope. Today’s visit was the culmination of an eleven and a half year search for the cause (and hopefully, cure) of my chronic health problems.

Finally, the answer: I have Lyme Disease plus co-infections of Mycoplasma Pneumoniae, Ehrlichia Chaffeensis & Anaplasma Phagocytophilum (HME & HGE Ehrlichiosis). Not Fibromyalgia or the umbrella term Chronic Fatigue Immune Dysfunction syndrome as previously diagnosed by another doctor. Lyme is a great imitator of the symptoms of many diseases.

Vindication, because I’ve suspected Lyme Disease might be the probable cause since finding a tick imbedded in my skin during a mission trip to the Dominican Republic in August of 1999. About 5 days later I fell ill with what I thought was a severe bout of flu but from which I never fully recovered. My health completely fell apart then and has never returned to normal.

Anger, because my primary care doctor at the time refused to test me or refer me because he claimed that Lyme was not endemic to Florida or the Dominican Republic and there was “absolutely no way” that I could be infected with it. 

Frustration, after being diagnosed with CFIDS in January of 2000 by an integrative MD who ignored my history of tick bite and instead gave me the umbrella term for a group of symptoms rather than look for a root cause to my debilitating fatigue and body-wide pain. 

Frustration again in 2007 after both a positive Lyme test and a call from the CDC to collect statistical data did not result in treatment or referral to a Lyme specialist. My health continued to spiral downward for another four years.

Relief, that I held tangible “proof” that I am indeed ill. (Not that I needed it. The last nearly twelve years have hammered that point home beyond all doubt). But perhaps now the naysayers and the “Karen must be depressed/anti-social/mental” crowd will be quieted. 

Sadness, for the years of health and life I’ve lost including not being well enough to pursue adoption, continue my nursing career or attend family gatherings and community fellowship.

Gratefulness, that I have found this specialist and that I have a treatment plan from an experienced physician with a proven track record with Lyme and other chronically ill patients. I can rest from my continuous research and quest for the cause and possible cure of my no-longer-mysterious illnesses. Once that burden lifted, I realized the tremendous amount of mental and physical energy I’d expended over the past decade on this obscure search. Gratefulness for the help of my awesome husband and a few dear friends, including a new neighbor who has brightened my life. Grateful for the lessons I’ve learned and continue to learn and especially the deepening of my faith in the midst of the hard journey.

And, finally, blessedly, true hope! For healing and resuming a normal life once more after all these years. 

It’s not going to be an easy or quick cure by any means. I will feel a whole lot worse before feeling better but I’m ecstatic. We don’t know how much permanent damage the Lyme spirochetes have caused. The crushing, debilitating fatigue will eventually lessen and hopefully, completely resolve. Will my arthritis be cured? The damage to my nervous system? Will the dizziness and fibromyalgia pains go away? Only time will tell but it feels so good to have a direction and a plan for the first time in all these many, long, difficult and lonely years!

I’ll be updating the blog more. I’ve been tired and discouraged and haven’t felt like saying much the past several months. I’ve also been debating about creating a separate blog for health updates but my husband reminded me that one blog is hard enough to keep up and he’s right. The blog will reflect our life - the good, bad, ugly and the recipes LOL!