Category Archives: symptoms

Lyme Disease Treatment Status

Hello to All,

I neglected my blog and email this summer. I suppose part of this is because I just wanted to enjoy myself and forget about being sick for a while (as much as that is possible). The other part is because I feel stuck, unmotivated, and frustrated. I’ve done hundreds of hours of research and feel that I know almost everything there is to know about this disease. I’ve been through almost 2 years of antimicrobial treatment and 1 year of serious detox before that. Though I’ve made a number of improvements, I’m still not well. In summary, my problems below the neck have improved considerably, but certain neurological problems have worsened.

I thought that this would be a good time to take stock of my healing progress. Here is the status on my symptoms:

Improvements:

  1. Headaches: lessened in severity and frequency, but still a problem 10 – 15 days per month
  2. Joint pain: gone
  3. Muscle pain: improved – occasional pain in right side of neck and shoulder ( I love Cryoderm topical for this)
  4. Irritable bowel: gone, or perhaps just being managed with magnesium and fiber?
  5. Depression: intermittent and milder (managed using exercise, 5-htp, l-tyrosine, and l-phenylalanine)
  6. Fatigue: improved from the past two years, but still a problem
  7. Vulvodynia: gone for months now
  8. Tooth pain: improved but still flares occasionally
  9. Food intolerance: much improved
  10. Chemical sensitivities: improved but still a problem
  11. Heat sensitivity: improved but I have to be careful
  12. Light sensitivity: started in 2011. Improved since then

Problematic or worsening symptoms:

  1. Dizziness/light headedness: a daily problem for me. This started with an episode of vertigo in 2011.
  2. Heart palpitations: a new problem that developed in December of 2012
  3. Anxiety: still a big problem, (especially when I get dizzy I tend to panic)
  4. Cognitive dysfunction: still a problem, especially decision making, organizing, and short term memory
  5. Insomnia: worsened in December

I summary, my symptoms still wax and wane. I have more pain-free days with good energy, very few days where I’m completely miserable and dysfunctional, lot of days where I just feel crummy and tired. The dizziness is my most disabling symptom at this time. I frequently cannot drive because of it.

So what the heck is going on?

My doctor ran some blood tests: ferritin, thyroid, thyroid antibodies, the usual blood work up, and a nutritional test called a Spectracell. My ferritin (iron storage) is rock bottom at 4.0, my thyroid is low, no thyroid antibodies (hurray!) and I have a few other abnormalities. I await the results of the Spectracell.

My new treatment plan:

  • Serious iron replacement
  • Boost thyroid with SSKI iodine. If not helpful, switch to thyroid meds
  • A new antimicrobial regimen using a tincture called Quintessence by Bio Pure. This contains herbs popularized by Stephen Buhner, including knotweed, stephania, andrograhis, red root, and smilax.
  • Teasel
  • Peony for blood

I’m starting very slowly, one herb at a time to determine tolerance. Wish me luck.

Until next time,

Laura

Lyme Disease Recovery and Rehabilitation

Hello to All,

I haven’t written in a while. Honestly, I’ve been lazy and unmotivated. I’m also in a treatment slump. I’m backing off treatment for a while to enjoy summer. It’s nice not to feel awful from the herx reactions, but I’m also not making much progress, either. I’m just back to feeling intermittently crummy and decent in daily/weekly cycles.

I’ve been thinking lately about what this disease has done to my life. I stopped working full time almost three years ago. I’ve done intermittent contract work, but even that was quite challenging. My problems are mainly neurological: chronic headaches, dizziness/vertigo, balance problems, insomnia, cognitive problems, depression, and anxiety. I’m one of those people who doesn’t look sick. This is a double edged sword. It’s nice to look good, but most people don’t see that I’m ill, so they don’t take it seriously. I’ve only begun to take my condition seriously since my diagnosis in October of 2011.

Neuro problems make it hard to work on a computer for any length of time. It’s difficult to focus on anything, for that matter. I exist in a fog; conscious, but disconnected from the world. My days consist mainly of puttering around the house alone with minimal productivity.  Even on days with low pain levels, I have little energy or motivation.  My brain feels gummed up. I have memory problems, and my skills have gotten rusty. I simply cannot function at the high level I used to 7 – 10 years ago.

When I started feeling better last year I tried doing some of the things I used to do, both personally and professionally. I tried making some art. I soon realized that my muscle memory had faded along with my technical skills. I struggled with project management, technical writing, and editing. This was very upsetting to me. I now realize that I can’t just pick up where I left off. I need rehabilitation and remediation to rebuild my skills on many levels. I need to take classes or find mentorship to accomplish this. Unfortunately, I have little money for these things now, so I’m not sure how to go about it. I feel stuck. But at least I now accept the reality of my situation.

Some of you are probably familiar with the Stages of Change Model developed by Prochaska & DiClemente in 1983. The stages discussed in their change theory are:

  1. Precontempation (not yet realizing the need for change)
  2. Contemplation (acceptance but not ready yet)
  3. Preparation (develop a plan of action)
  4. Action
  5. Maintenance

Whenever I feel stuck, I find this model useful to get me moving. I’m in the Contemplation stage for this particular issue. I know what I need to do, but have not yet figured out how to go about it. I also have a ways to go for medical treatment, so I don’t want to be too hard on myself. The fact is, I have a sludge of infection and toxicity affecting my brain. But I’m growing impatient! I’m tired of existing in an unmotivated, unproductive fog. I have a good brain and I want to use it to its fullest capacity.

To tease the problem apart further, my treatment is stuck because of poor detoxification ability (confirmed by genetic testing). If I can figure out how to process out the toxins released by dying microbes, I can progress further. This is my next plan of attack.

One of the things I love about writing is how it helps me to solve problems. I may feel lost when I start writing, but I usually end up with a plan!

Laura

My Symptoms

This is a list of all the symptoms I experienced from 1998 to 2012. Some of these problems were consistent, some were sporadic. I will list them in chronological order as I experienced them.

*I placed an asterisk next to the symptoms that have abated with Lyme Disease treatment in the last six months.

  1. Migraine headaches (improving)
  2. Severe joint pain in knees and neck*
  3. Burning pain in neck, back, and shoulders*
  4. Tender points on body*
  5. Fatigue (improving)
  6. Irritable bowel*
  7. Insomnia
  8. Vulvodynia (unexplained burning pain of vagina/vulva)*
  9. Hormonal imbalance – low progesterone and thyroid
  10. Depression (improving)
  11. Anxiety*
  12. Social anxiety (improving)
  13. Cognitive dysfunction*
  14. Memory problems (improving)
  15. Confusion/Indecisiveness (improving)
  16. Food sensitivities (causing headache and general malaise)*
  17. Chemical sensitivities (causing headache and general malaise)
  18. Chronic headaches – daily*
  19. Arthritis in feet and hands (improving)
  20. Pain in jaw, face, and teeth/trigeminal neuralgia
  21. Vertigo (improving)
  22. Dizziness (improving)
  23. Tinnitus (improving)
  24. Chronic chapped lips (an allergic response?)
  25. Light sensitivity*
  26. Heat sensitivity
  27. Exercise intolerance (improving)

Notice the similarity with the list published by the Townsend Letter in my last entry. No wonder some people (and a few physicians) thought I was a hypochondriac. Indeed, I was starting to think I was crazy. But I wasn’t. I just had a systemic bacterial infection that affected my brain, nervous system, muscles, and joints. And it took 13 years to get a proper diagnosis.

The anger rises up in me when I think about the ineptitude of such an expensive, modern medical system. At least fifteen different physicians of different disciplines were not able to help me. How is it that so many physicians were not able to think outside the box when faced with something unusual? And how hard did they really try to help me?

Unbelievable.

Lyme Disease Signs and Symptoms

No wonder Lyme Disease is often called “The Great Imitator.” Check this out…

Signs and Symptoms of Infection

– copied from The Townsend Letter website: http://www.townsendletter.com/Jan2005/lyme0105.htm

The first recognizable symptom following a tick bite is the development of a rash at the site within 7 to 10 days. The rash expands with an area of central clearing. Other symptoms may include low-grade fever and/or headache. The rash and early symptoms clear within 3 to 4 weeks. Multiple secondary rashes may occur following this time period. Bouts of arthritis, usually involving large joints, especially the knee, are very common. Arthritis attacks usually resolve within 3 to 4 years with or without treatment.

Early neurological complications include Bell’s palsy, meningitis and encephalitis. Sub-acute symptoms may include cognitive deficits, mood and sleep disturbances, persisting for more than 10 years. One of the most common symptoms is intense fatigue. Additional symptoms may include memory loss, poor coordination, slurred speech, poor concentration, unusual depression, burning, stabbing pain, tremors, anxiety, swollen glands and tinnitus.

Some Lyme Disease Signs and Symptoms

  1. Intense Fatigue
  2. Memory Loss
  3. Burning/Stabbing Pain
  4. Tremors
  5. Joint Pain/Swelling/Stiffness
  6. Shortness of Breath
  7. Poor Coordination
  8. Anxiety
  9. Slurred Speech
  10. Swollen Glands
  11. Chills and/or Fever
  12. Nausea/Vomiting
  13. Rash
  14. Muscle Cramps
  15. Sudden Mood Swings
  16. Headaches/Migraines
  17. Poor Concentration
  18. Light Sensitivity
  19. Unusual Depression
  20. Tinnitus

Most Common Diseases Associated with Lyme

  1. Alzheimer’s Disease
  2. Polymyalgia rheumatica
  3. ALS
  4. Reflex sympathetic dystrophy
  5. Bell’s Palsy
  6. Rheumatoid Arthritis
  7. Chronic Fatigue Syndrome (CFS)
  8. Scleroderma
  9. Fibromyalgia
  10. Syphilis
  11. Irritable Bowel Syndrome
  12. Multiple Sclerosis
  13. Lupus
  14. Parkinson’s Disease
  15. Depression
  16. Autoimmune Disorders
  17. Middle Ear Pressure
  18. Tinnitus
  19. Vertigo
  20. Rheumatoid Arthritis

Ack! No wonder this disease is so hard to diagnose. Over the last 14 years I have had a number of the symptoms listed above. I started thinking I was crazy. But I wasn’t.

Two words of advice for anyone else suffering from multiple symptoms such as these: get tested. And be sure to get tested by a doc who knows Lyme Disease well.