Tuesday, May 3, 2011

Lyme's Disease = Body Wisdom

The last few weeks I've been coping with severe headaches almost every day.  A few days ago I got an amazing massage which I thought might have knocked out the pain once and for all, but unfortunately it came back this morning with a vengeance.  Steel nails through each of my eyes as well as the back of my neck. 

Three days ago I noticed I was feeling an urge to itch where "nice girls" aren't supposed to touch in public.  Then I noticed it was looking particularly red.  My underarms both had impressive crescent rashes too.  Then I noticed the hives under my breasts and across my stomach. 

When I got the massage, I did some particularly powerful emotional release work, so I thought that perhaps the rashes were toxins releasing from my body in annoying ways - how interesting. 

Then this morning the stupid headache came back so strongly, I decided I should go to the doctor to see what's up.  I had found two ticks on my body the last three weeks so I was anxious I might have Lyme's disease or some other horror those diabolical creatures can impart.

I go to a doctor's practice where there are some doctors I like and one who is the fastest talker I've ever come across.  Unfortunately the luck of the draw had me get him this morning.  He walked in, asked where I had the tick bites.  I showed him behind my knee and on my back.  He said, "You have a rash?"  I said yes, and pulled off my jacket to show him under my arms.  I started to pull up my shirt and said I'd need to pull off my pants to show him the other rash.  He waved me away impatiently and told me I had Lyme's disease.  Headaches, rashes, ticks = Lyme's disease.  I told him I'd had the headaches longer than the ticks.  No matter.  I told him I've having hot flashes which are waking me up nightly.  He waved me off.  Amusing.  Middle aged woman = hot flashes = ignore.  I've been exhausted and low energy for longer than the ticks.  So what? 

He led me to the room where they draw blood and spoke to the nurse.  I peppered him with questions which he answered while filling in paperwork and talking to the nurse.  What's the rate of false positives on the test?  False negatives?  No answer.  Could you please do a Whole blood count too to check the levels of my minerals and so on.  "You don't need that.  I wouldn't do anything if they were low anyway."  "Well, I would, and I'd like to know."  Condescending request to the nurse to do one for me.  Walking away as I try to ask more questions.  "How long until I get some relief from the rashes and headaches?"  "72 hours."  "And if there's no relief?"  "Maybe it's fungal and I'll prescribe a topical cream."  "Wouldn't it be better to start there?"  "It's Lyme's disease."  "How often do you see it?"  "One other time on a woman travelling through from FL to NY."  "So it isn't common.  Why do you think that's what I have when I have so many other symptoms?"  Walking away while making notes.


The pharmacist was more helpful in answering questions, though she had the same answers.  At least I felt listened to and like she responded to me.  It's so frustrating to see a doctor and not feel heard.  He didn't even give my rashes a careful look, nor did he ask about the headaches, their duration, where they hurt, how long I'd been having them, what I'd tried to do to alleviate them.  Perhaps he would have come to the exact same conclusion, but I would be feeling better now if he had asked.  I want a doctor who isn't squeamish about looking at my body!

Guess I'll be looking for a new doctor.

And hopefully the 30 day course of antibiotics will take care of these symptoms and I won't get any others.  It's scary to think about having an illness like this which has such debilitating consequences if not treated early.  Here's what Wikipedia says about the early and later symptoms:

Early disseminated infection
Within days to weeks after the onset of local infection, the Borrelia bacteria may begin to spread through the bloodstream. EM may develop at sites across the body that bear no relation to the original tick bite.[16] Another skin condition, which is apparently absent in North American patients, but occurs in Europe, is borrelial lymphocytoma, a purplish lump that develops on the ear lobe, nipple, or scrotum.[17] Other discrete symptoms include migrating pain in muscles, joint, and tendons, and heart palpitations and dizziness caused by changes in heartbeat.

Various acute neurological problems, termed neuroborreliosis, appear in 10–15% of untreated patients.[14][18] These include facial palsy, which is the loss of muscle tone on one or both sides of the face, as well as meningitis, which involves severe headaches, neck stiffness, and sensitivity to light. Radiculoneuritis causes shooting pains that may interfere with sleep, as well as abnormal skin sensations. Mild encephalitis may lead to memory loss, sleep disturbances, or mood changes. In addition, some case reports have described altered mental status as the only symptom seen in a few cases of early neuroborreliosis.[19]

Late persistent infection

Deer tick life cycleAfter several months, untreated or inadequately treated patients may go on to develop severe and chronic symptoms that affect many parts of the body, including the brain, nerves, eyes, joints and heart. Myriad disabling symptoms can occur, including permanent paraplegia in the most extreme cases.[20]

Chronic neurologic symptoms occur in up to 5% of untreated patients.[14] A polyneuropathy that involves shooting pains, numbness, and tingling in the hands or feet may develop. A neurologic syndrome called Lyme encephalopathy is associated with subtle cognitive problems, such as difficulties with concentration and short-term memory. These patients may also experience profound fatigue.[21] However, other problems, such as depression and fibromyalgia, are no more common in people who have been infected with Lyme than in the general population.[21][22] Chronic encephalomyelitis, which may be progressive, can involve cognitive impairment, weakness in the legs, awkward gait, facial palsy, bladder problems, vertigo, and back pain. In rare cases untreated Lyme disease may cause frank psychosis, which has been mis-diagnosed as schizophrenia or bipolar disorder. Panic attack and anxiety can occur, also delusional behavior, including somatoform delusions, sometimes accompanied by a depersonalization or derealization syndrome, where the patients begin to feel detached from themselves or from reality.[23][24]

Diffuse white matter pathology can disrupt grey matter connections, and could account for deficits in attention, memory, visuospatial ability, complex cognition, and emotional status. White matter disease may have a greater potential for recovery than gray matter disease, perhaps because neuronal loss is less common. Resolution of MRI white matter hyperintensities after antibiotic treatment has been observed.[25]

Lyme arthritis usually affects the knees.[26] In a minority of patients, arthritis can occur in other joints, including the ankles, elbows, wrist, hips, and shoulders. Pain is often mild or moderate, usually with swelling at the involved joint. Baker's cysts may form and rupture. In some cases, joint erosion occurs.

Acrodermatitis chronica atrophicans (ACA) is a chronic skin disorder observed primarily in Europe among the elderly.[17] ACA begins as a reddish-blue patch of discolored skin, often on the backs of the hands or feet. The lesion slowly atrophies over several weeks or months, with the skin becoming first thin and wrinkled and then, if untreated, completely dry and hairless.[27]

I'm not happy about this possibility and would like to deny it.  I notice I don't like being sick.  I like having energy and being able to accomplish a lot each day.  This lethargy and pain is discouraging and frustrating, and I'd most like to ignore it, but it doesn't really work that way.  I'm finding I have to be gentle with myself and rest and be nice to myself and listen to what my body needs.

A friend suggested that perhaps this is the Universe's way of teaching me yet another beautiful lesson about my body - it deserves to and needs to be listened to.  Its wisdom is powerful and important.  Instead of being mad at my body and wishing it were different, perhaps the thing to do is to listen gently to it and thank it for its wisdom and teaching.

So thank you, Dear Body.  Thank you for the headache and rash which were bizarre and painful enough to get me to listen and to go to the doctor.  I've listened.  I will be gentle.  I will rest.  Please, now, let me heal so I can get back to work!  Oops - uh, I mean, so I can continue to listen respectfully to your wisdom.  Next time you won't have to speak so forcefully.  I promise to listen sooner!


  1. Such a frustrating experience with that doctor...Lyme can be so very dangerous and difficult to detect. Some friends of mine in NoVA have been severely affected by this disease. If you have it, hopefully the antibiotics will take care of it for you. If you'd like additional resources, I'd be happy to share with you. I hope you are able to soon find a doctor who will listen to your concerns, especially since your headaches began before the ticks. Best wishes.

    BTW--I really enjoy your blog. Thanks for being here and sharing.

  2. Thanks, Jennifer, for your comment. I'd love some additional resources. That would be great! Thank you!

  3. Susan, I could not believe it when I just read your post. I had very similar symptoms, but I thank God for the rash or I would never have gone to the doctor's, just thought I had a weird late-season flu. I was diagnosed on Monday in much the same way you were, but my doc was nice about instantly knowing it was lyme from my symptoms plus rash. BTW, it was the worst headache I could ever imagine. Thought I was dying of meningitis. Anyway, I am now taking doxyclcline 2X/day for 21 days. That is the same protocol I had read about on the web, so I feel ok with it. It is now 3 and a half days of taking them and the headache has receded, but I feel totally debilitated and very foggy. Weak. I have had to cancel just about everything--even have to get a doctor's note for a class! Can not find anyplace on the web where they tell you when you will stop feeling sick. I mean, I do feel better, but not like myself at all.

  4. Anyuta, thanks for your post. I'm taking doxyclcline 2x/day for 30 days, but I just found out that the Lyme's titer came back negative, so apparently I don't have Lyme's disease after all.

    Has your rash gone away? What was it like?