The Realities of Lyme Disease

Guest post by Pamela Dodd – Thank you!

I never appreciated being a homebody until I found out I had Lyme Disease. Healing from Lyme can be a roller coaster ride. Having a supportive home base really helps.

I’ve probably had Lyme since I was a kid in the Philadelphia suburbs in the 1950’s. My parents were always puling ticks off the dog and my brother and me. However, I don’t remember getting the classic rash or flu-like Lyme Disease symptoms.

The Ixodes tick, which carries Lyme disease

The Ixodes tick, which carries Lyme disease

My Lyme showed up slowly over the years in various seemingly unrelated ways. Occasional bouts with extreme fatigue in my late teens and early twenties. Finger and hip stiffness after the births of my two sons in my late 20’s. The sudden loss of use of my left hand when I was 38. Shortness of breath in my 50’s when I exercised. Chronic sinusitis. Brain fog. Lack of verbal fluency. Low blood pressure and pulse. Plus several episodes of vertigo, two requiring trips to the hospital.

Four years ago I finally found out I had Lyme. My husband has it too; many Lyme patients and Lyme-literate doctors believe Lyme is sexually transmitted, similar to its bacterial cousin syphilis. It’s been a challenging journey for many reasons common to all Lyme patients.

First, Lyme is a brilliant organism that has learned how to change in the body to survive. Some becomes resistant to antibiotics. Some becomes cell-wall deficient, hiding out in red blood cells. Some becomes encysted and goes dormant in hard-to-reach places.

Second, dead Lyme is more toxic than live Lyme. You can only heal from Lyme as fast as your liver, gut, and kidneys can handle the die off. Go too fast and you get what’s called a Herxheimer reaction, an inflammatory process marked by fever, chills, headache, muscle pain, and exacerbation of skin lesions. So you can feel much worse, not better.

Third, Lyme usually comes with additional co-infections. Ehrlichia, bartonella, babesia, and mycoplasmas are common. Few Lyme patients have them all, but most have at least one, which complicates treatment.

Fourth, no two Lyme patients have exactly the same symptoms. Lyme mimics over 350 diseases, including lupus, Parkinson’s, multiple sclerosis, and rheumatoid arthritis. Lyme can affect every body system and likes to settle where there are constitutional weaknesses, either inborn or due to prior injury or illness.

People with the worst cases of Lyme can become completely disabled. Usually these folks have been ill for a long time and spent months or years visiting many doctors to try to find out what’s wrong with them. Along the way they’ve been misdiagnosed and therefore mistreated, exacerbating their Lyme.

Even people like me, who outwardly don’t appear to be sick, have good days and bad. On our worst days, we drag around, take naps, and get little done compared to our most productive days. I’m lucky that I work at home. Others with jobs outside the home usually struggle to keep up with both their work and their Lyme Disease treatment. Often they have to quit and go on disability, if they’re lucky enough to have it.

After I found out I had Lyme, I asked my doctor what my prognosis would have been if it hadn’t been found. She said. “Oh, a slow slide into total disability and death.” Given that scenario, I stick with the program, even though four years into treatment, I’m still not seeing an end in site.

With time, however, I am getting a deeper appreciation for what it takes to live with a chronic illness. Where once there was frustration, impatience, and anger, now there’s quiet acceptance. Some might call this resignation, but I see it more as a realistic assessment of what’s so. When you accept that you can only start from where you are, not where you want to be or should be, it’s amazing how less stressful life can get.

- Pam
[Ed: Thanks to Pam for the guest post! I welcome guest posts here - anything relevant to those who are homebound or bedridden is great. If you'd like to submit a guest post, just contact me.]

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3 responses to “The Realities of Lyme Disease”

  1. jason Nolan

    fascinating. I’ve not read of lyme disease from a personal experience perspective.

  2. Jo-Ann Colburn

    Thank you for sharing your story. I am currently being treated for lyme disease. I also did not have the rash. When I asked for the lyme test the doctor told me that the tick hadn’t been in me long enough for it to have transmitted the disease to me.(It wasn’t in me more than a few hours) There is so much that doctors don’t know about this disease and what it is like when you have it. I have never experienced fatigue like this before. I am looking forward to being on the other side of all of it. Sharing your story helps everyone! Thank you!

  3. Alejandro Loynaz L

    Questions about Lyme’s mimic on Parkinsion’s
    Hello to all. I found your article very interesting. In fact I was diagnosed for something called Idiopathic Young Onset Parkinson’s Disease in my mid thirties and after a very stressful episodes in my life. I’m a civil engineer and my line off work has put me in contact with a LOT of dangerous “materials” such as Lead and Mercury based Paints and Chemicals. Insecticides such as B-HCH and Herbicides such as Paraquat, but also with lots of ticks. I have found that all of them are the “probable cause” of my Idiopathic illness.
    I live in Venezuela , here we have lots of those little animals. But I’ve done some hiking and fishing over the Appalachians and Rockies, in New Hampshire, Maine, and Canada Wilderness but I have also played Golf in some resorts at Florida and I’ve tried to retrieve some of those Out of Bounds. So I have been bitten by the best of the 1st and 3rd world’s ticks. Until now, I never thought those little pest could be the real cause of my PD.
    A couple weeks ago I went to a clinic in Florida to see a special MD, as Dr. House in the TV show (but without the annoying sense of humor) he has seen more that the Movement Disorder, he has studied the whole picture, looking for the other part of the iceberg not just what he could see on the surface. We. Both, where puzzled by some of my other symptoms such as: heat/cold waves, shivers in hot days and sweat on cold ones, eye sight sudden changes (got six pairs of lenses), loss of smell, of hearing capability, sleeping disorder, allucinations, panic, worries, join pains, neck stiffness, jaws pain and many others, and he came with this wild idea and asked me: Have you ever been bitten by a tick? I said: Off course, lots of times. So he asked my for a blood sample to send it to a lab. At this moment I’m waiting for the results. But after doing some research on LD and NeuroLD that little thing could be responsible for my father death from MSA, my grandmother from Alzheimer, 2 aunts with fibromyalgia another one with depression and a rare stiffness in the jaw and my PD. We all had a common factor, we all were bitten lots of times by ticks at grandfather’s farm .
    If the ticks are found guilty, can anybody tell me about my prognosis, what to expect in the future. I’m I ever be the one I used to be? How bad id the treatment?,
    Thanks for the opportunity to write this,
    Sincerely
    Alejandro L.

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