Chronic Lyme Disease - One Person's Diagnostic Journey

Our bodies are generally so wonderfully resilient that we can shed or counteract most threats to our health. But there are those that still move through all of our wonderful defenses.

Lyme Disease seems to be one of them, although I know very little about it except that if you are bitten by the deer tick and get infected then you may or may not get the tell tale bulls-eye rash. I also don't know if everyone is susceptible to the infection, or if only some get it. But I do know that if it is untreated it can lead to down the road consequences which are varied and which can cause havoc for your wellbeing.

It is in that context that I share the following e-mail which was sent to me by a lovely young woman who is in my community. I found out that she has been having some physical problems which were impacting her life quite a bit, and we struck up an ongoing conversation. Part of that conversation involved my encouraging her to stay active in the diagnostic process and also to please let me know how things develop and turn out.

In response to that request she sent me the following material with an energetic encouragement to share it on my blog. As you can see, she wants to get the "word" out. (N.B. I have excluded a few sentences to further protect her privacy - although as you can see she has created an email identity so that people can contact her directly to discuss further.)

I was diagnosed with Chronic Lyme Disease.

• 
  Over the past one and a half years plus, I exhausted two internal medicine doctors, two neurologists, two endocrinologists, a cardiologist, an ophthalmologist, a gynecologist, two psychiatrists, three psychologists and three primary care physicians. These doctors ruled out thyroid disease, adrenal fatigue, anemia, anorexia, myasthenia gravis, hemochromatosis, lymphoma, leukemia, cancer, lupus, syphilis, amyloidosis, sarcoidosis, cardiomyopathy, fibromyalgia, Parkinson's disease, multiple sclerosis (MS), amyotrophic lateral sclerosis (ALS or Lou G Gehrig's's disease), and lyme disease! ...Standard blood tests ruled out lyme disease three times.
  
  After all of this, I was treated with medication for anxiety and depression and the treatment was relatively ineffective. I was also encouraged to exercise. (Exercise?! I can't get up the stairs sometimes! And my echocardiogram & stress test at age 36 "had the results that a 55 year old would have".)
  
  My symptoms for the last year and a half have been, in the following progressing order :
  
  ongoing weight loss
  severe anxiety & depression/despair
  short term memory loss & confusion
  SEVERE overall fatigue
  Shortness of breath
  Muscle weakness in arms and legs and difficulty climbing stairs or opening doors or turning the steering wheel in my car
  Muscle cramps/spasms in my legs
  Strong muscle "twitching" (for example: my arm will involuntarily leap up over my head while I'm falling asleep.. or my stomach muscles will belly dance involuntarily...or my hand will suddenly squeeze an imaginary ball 4 times in a row... It's all so WEIRD.)
  
  I also had random but more nagging symptoms like:
  
  peeling finger nails
  recurring rash on the palms of my hands and feet
  tremor in my hands
  increase in facial hair
  heavier menstrual periods
  
  I'd also like to note that two recent fellow lyme disease sufferers experienced paralysis on one side of their faces.
  
  Without anywhere or any doctor to go to next, I was diagnosed, or more accurately "categorized" with Chronic Fatigue Syndrome, which, as I was told by my second neurologist and final doctor, basically means that all my doctors are stumped and have nothing else to call what I was experiencing -– at least not until my symptoms progressed into one of the disorders that I had already been tested for; or until my symptoms simply disappeared. I'd had every blood/urine test, brain & body scan, and physical or neurological evaluation that I could imagine and they all turned up nothing.
  
  I started telling everyone and anyone that I had been diagnosed with Chronic Fatigue Syndrome hoping that someone with experience could tell me what to explore next. That's when a friend's Mom, had a friend, who had been diagnosed with Chronic Fatigue Syndrome and was finally correctly diagnosed and successfully treated for Chronic Lyme Disease. Chronic Lyme Disease begins by a deer tick bite carrying Borrelia burgdorferi, a bacteria, that first spreads locally (50% of bites present a rash at the site of the bite) and then becomes systemic.
  
  That's the trick in diagnosing Lyme Disease: Apparently, lyme bacteria becomes systemic shortly after it enters the blood and then there is really no way to test for it once it leaves the blood and enters your body's cells. Once you have the bacteria, it finds a home in random cells in your body, and lies dormant, sometimes for years, and only becomes active during periods of stress. Each subsequent stress period brings on new and/or more severe previous symptoms. It would seem that the bacteria get stronger with each bout of stress in defense of their restful home in your cells.
  
  There is standard laboratory blood test for lyme disease and another more involved lab test called the Western Blot test. The latter is also used to test for people with HIV. Both of these lyme blood tests can offer false negatives simply because the bacteria are no longer in the blood. The Western Blot test encourages certain bacteria to adhere to certain proteins (calcium being one of the most common), and based on the proteins that the bacteria adheres to, they reveal themselves as lyme.
  
  The prognosis for Chronic Lyme Disease is excellent. I'm told that as long as I take the antibiotic long enough to find all hidden bacteria, then I should be free of Lyme for the rest of my days. Tetracycline is apparently the most effective antibiotic, though there are two other antibiotics that are used as well. I'm on Tetracycline now.
  
  The doctor informed me that my symptoms would worsen over the next 2 months or so of antibiotic therapy, but to knuckle through it; By the third month I should be feeling better. The antibiotics have to spend time locating the bacteria, then the bacteria will become violently active as they are attacked... thus the sudden worsening of symptoms before feeling better.
  
  The reason for continuing the antibiotics beyond the first 3 months, or beyond "feeling good again", is to be sure we've given the antibiotic time to find all the lyme bacteria in one effort. If not, I could have a reoccurrence of symptoms later, and a second round of the antibiotics would be less effective and likely unsuccessful.
  
  The infectious disease doctor that has finally diagnosed me specifically with Chronic Lyme Disease is stating confidently that lyme or some other similar bacteria have been hiding out and wreaking havoc in my central nervous system. He believes that the bacteria have likely been causing me trouble for as many as the last 10 years, and could have been bitten back then when I was an avid mountain biker. Lyme could even have been the cause of some of my postpartum symptoms of anxiety, dementia, hyperthyroidism, and severe fatigue - simply in response to the stress of childbirth and my subsequent recovery.
  
  I'm going to be taking 1500 mg of antibiotics (Tetracycline) daily for the next 9-12 months. I've been on that regimen for about two weeks so far and I am so hopeful at last - even though, true to the doctor's word, my fatigue and anxiety have sprung like gangbusters.
  
  I have found this article to be very helpful to my understanding of the process of Lyme Disease.

I hope this information speaks to any other "mysterious" disease sufferers out there. I'm open to having my email MysteryNoMore@gmail.com shared with others any time and to compare notes. I wish someone was there to offer me hope sooner, but the process I went through was necessary. I'm hopeful that I've found my diagnosis, but I'm still listening to other fellow sufferers for other possibilities!

++++

I find it so interesting that the "Lyme" "strengthens" at times of stress. Yet another reason to grab hold of our lifestyles and make decisions and choices which are in our best interest both short term and long term.

Remember the basics, but only always: eat well, rest well, laugh more, don't take it all too seriously, build relationships, keep a positive mental attitude, let go, let go, and keep it simple.