Bloody Lymey

A Blog About Living with Lyme Disease

I’d Rather Show Smiles than Sjogren’s

Of course today was my doctor’s appointment and I was FINE. A topic came up: Sjogren’s Syndrome (Pronounced: “Show-grins”).

“Why?” You ask?

Well. I mentioned my sweating – or lack thereof. I haven’t mentioned it before because …. it’s natural to go to doctors with COMPLAINTS. Feeling confident, confident, dry and secure on a hot and muggy August day when my friends have damp curly hair and wet underarms isn’t such a bad thing. Is it? But …. I brought it up. She asked me some other questions. Yes, the heat does bother me sometimes – even sans sweat. Headache? Why yes! For two days with neck pain. Dryness? Well….. I’ve been a thirsty person since I was born. That’s my baseline. I wake up sometimes with dry eyes – like anyone! – and blink a few times and it passes. But my eyes …. pressure and sometimes blurry. [I told her during my last visit when my complaints were neurological]. Neurological. That sounds more like Sjogren’s than RA – and she’s going to test me for that, too, since my last test was four years ago.

I read about it and a website mentioned the metallic taste. Hmmmmmm. I’ve rassled with this one for years. Sometimes my coffee tastes horrible. Sometimes I’m bitterly disappointed in Dunkin’ Donuts. And my coffee maker at home. And Starbucks. How can they ALL suck? Well. It’s not them. It’s me.

Reading more about it, it might explain better the horrible progression of my teeth. Two dainty lil’ cavities and my teeth are rising far above my gum line and the dentist has used the term “bone recession” with regard to my jaw. He said it doesn’t flush with the condition of my teeth. The lady who did the “deep cleaning” told me to expect it to take a long time. It didn’t. She was amazed by how “clean” they were below the gum line, adding it didn’t match my x-rays. Two puzzled dentists. Two.

So the plan: I’ll be tested for a rash of things – but not a rash itself – in the next fiscal year (starting July 1st) so I’ll pay one deductible for alllllll these services. Why pay one thou’ when I can shell out a mere $500? A mere $500. Har har har. Yeah, I’m miss money bags [not at all]. But it sounds better than $1,000. No commas. No commas are GOOD.

And I’m going to be referred to a Rheumatologist. And that sounds good to me, just to have a second opinion (and my brilliant and aggressive Dr. C. used that term).

I’m glad I felt good. I don’t think this doctor has seen my everyday non-sick self like …. EVER. I could also articulate my symptoms better than I might have last week when I had that massive brain fog.

So, I’m back to wondering what’s going on.

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Lyme Support Group Berkshire County, Western Massachusetts

Here’s the newsletter I got –

I haven’t been to any of their meetings yet, but they have been going on for some time now. They must be pretty good! I hope to get out to one soon. It’s fairly accessible to Eastern New York and Southern Vermont. It may be a stretch, but Northern Connecticut, too. Lyme Disease is a pretty lonely illness – there’s support if you need it. I know there are other groups out near Springfield, MA as well – Longmeadow area. Here’s info on the Berkshires one:

The monthly Lyme Disease support group hosted by the Lyme Alliance of the Berkshires is set to meet this month and has also scheduled meetings for March and April.

Adams Free Library
92 Park Street
Adams, MA 01220

6 to 7:30 pm

Next Meeting: Tuesday, February 28th, 2012

Upcoming Meetings: March 15th, 2012 & April 19th, 2012

I look forward to seeing you there.



The 99% – Occupy Lyme Disease

I was thinking about the whole “we are the 99%” thingy.  This blog is based on my chronic illness:  chronic Lyme disease.  In the past year period, I have been bounced from health insurance policy to health insurance policy like four times.  I’m again in “deductible” land and I haven’t finished paying off my specialist for my last visit due to a deductible.  Mercifully my co-pays on my meds are manageable.  

My symptoms have been up and down and there have been some changes that make me think I ought to see the doctor again. I don’t know if Lyme has upped the ante or if there’s something new to concern myself with.  Lyme disease has shown me it is like a house of cards with causing auto-immune things.  From a strange sensation in my feet akin to jumping burning embers to the pressure in my head to the sudden changes in eyesight throughout the day to episodic incontinence …. I am worried.  I have a $500 deductible and Christmas is coming.  My bout with unemployment this summer set me back a little bit with my savings.  I can keep my head above water, but this fork in the road with my health and finances makes me think of other people in other states.  

Let me qualify that statement.  

I live in Massachusetts.  We are obligated to have health care.  If we cannot afford it, it will be afforded for us through Mass Health.  If it is not offered because we are part time or work for too small of a company, we can buy the often affordable Commonwealth Care.  Unfortunately, if we CAN afford it and it IS offered, we are forced to take it.  I’m glad for this because when my Lyme disease was in its early phases I was newly separated from my then-husband, working 30 hours for $10/hour and living with my mother because I couldn’t pay rent after childcare.  Talk about being the 99% ….

But if it wasn’t for Mass Health, my finances would be a shambles right now.  Or I might have solidified my denial – in the early days I was rationalizing my symptoms with “I’m getting older’ and “I have an energetic young boy and I’m a single mom and of COURSE I’m tired.”  If anything else could have talked me out of going to the doctor (and that could be just a few bucks), then I would have not gone I’m sure.  Some of those Lyme tests themselves can be a few hundred bucks – and let’s not touch the specialists and the doctor’s visits.  

So I’m thinking – what if I lived in California or New York or Alaska or anywhere else?  What if I was in that financial situation where my job did NOT offer insurance because they were small or because I didn’t work enough hours or I didn’t work there long enough or some other thing?  Massachusetts offers Safety Net if you get a job that offers insurance after a 3-month period or whatever the magic month is.  It didn’t get me into the doctor’s office, but if I was hit by a car or some other tragic and unforeseen circumstance then it wouldn’t have ruined me financially.  

With this in mind, why are people SO against the government giving us another option?  Why can big wig CEO’s in companies pay the same rates that the most fortunate of us can pay when other people are struggling, trying to scrape together money for their baby’s Ibuprofen because they have a fever?  Why are the top dogs with the top dollars treating their aging rich wives to plastic surgery while everyday people are shirking their responsibilities to themselves and their families to seek preventive medical help with an annual physical?  Why are the richest of the rich lounging in spas and getting their pores sucked clean with mud while the working class winds up with cancer because it wasn’t caught in time?  

I’m lucky.  I’m damned lucky.  Thank you, Massachusetts, for the healthcare.  I keep thinking where I would be right now if I had let it go longer.  

I had a rough patch last week with the exhaustion and pain.  Today the walk upstairs isn’t such a long walk.  I worked from 9:30 this morning until 6:30 tonight, cooked dinner, cleaned the kitchen up after, went to an AA meeting, and here I sit.  Thank God.  Thank God.  

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Doctor, Doctor, Give Me the News….

I fired a doctor who said I was depressed. I found another doctor who wanted to give me Ativan for my symptoms; he didn’t come


and tell me it was “in my head.” But I know Ativan is an anxiety med. He didn’t say that it’s used for other things or anything. Just that it would help.

I also told this quack that I’m a recovering alcoholic and that taking something from the Benzo family would be …. less than desirable. Especially since I had a love affair with Valium when I was 14. He chuckled and looked at me like, “Isn’t she cute?”

He said they use it in detoxes for alcoholics all the time (here I was sober for several years already … 4 maybe?). I took the piece of paper, the prescription, to shut him up. I threw it in my glove compartment and threw it out when I got home.

Now what?!

I switched doctors again. My mom was lamenting for months that I didn’t have a smart doctor like hers. So? I switched to hers.

I have difficulty stating how badly I feel, so mom came with me and did the talking. At this time, my heart was flipping out. I woke up at night not breathing –


was scary. My knees were becoming arthritic and I was scared to cross the street because it would take me so long.

I had a heart to heart talk with close family members about what would happen to my son …. what would happen IF ….

Yeah. I thought I was going to die. The heart stuff was nothing I’d ever experienced (I was an anorexic when I was younger so heart palpitations aren’t foreign to me. This was something else entirely.). The breathing terrified me. What if I didn’t wake up when it happened? I’d sit up, gasping for air with my heart rattling in the darkness.

Finally I saw Dr. C. She was sympathetic and seemed to genuinely believe me. This was new. She felt my knees and agreed they were swollen. I don’t remember what she gave me, but she gave me something and asked me to return in a week.

And there were scads of blood tests: Rheumatoid Arthritis, Lupus, Vitamin Deficiencies ….. Lyme Disease. I sat there with the needle in my arm as the lady switched vial after vial after vial. I asked her if they were conspiring to sell them on the black market.

I tried to keep doing things with my son and it was April 2008. I took him for a walk in the woods. Bundled up in layers, we took a walk on a dirt path with a large wake between us and the trees. I trudged along, my knees screaming in pain. I kept my hands in my pockets because the weight of my arms felt such a burden to my shoulders; it was like carrying 50 lb weights all day with no relief. The sun was warm, a benign breeze filtering fresh air over us. In the shade were residual snow piles.

The next morning, my butt was itchy. ITCHY. My fingertips wandered under the elastic waist of my pajamas and scratched furiously. There was a bump. A big, scabby bump. I had my mom look at it.

“It’s a spider bite,” she informed me. With tweezers in hand, she picked at it. “See? The spider’s still here. He’s small….”

She presented the insectile carcass to me, and I saw a tick. A deer tick. We stashed it in a Ziploc and headed back to the doctor.

She chose to treat me for lyme disease after hearing that I walked in the woods ALL the time. Dr. C. didn’t think this particular tick was to be incriminated in what’s happening to me, obviously. My symptoms predated this nasty little guy by who knows how long. She declined to test him. It was obviously irrelevant. But she had questions.

My answers:
No, there was no other tick that I recalled. No, there was no bull’s eye rash. No, there was no rash at all. No, I don’t recall any initial flu symptoms. No, I don’t remember when this started – but the worst of it seemed to be last summer.

And so I was on Doxycycline. Three weeks, twice a day.

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The VERY Beginning ….

The tiredness was so gradual, I didn’t really notice it. My mom kept at me, telling me it wasn’t normal.

But I thought it was. I had my first child when I was thirty-one and he was a rambunctious toddler. No one had the energy and wherewithall to take care of him for more than a couple of hours, so I didn’t get a break. I lived for his naps and I lived for his bedtime. I was skinny. SKINNY. And I didn’t want to be. I just wanted to sit down for a few minutes. Surely anyone in my lifestyle would be exhausted.

Being cold was pretty gradual, too. It would be very warm out and people were remarking on my affinity for wearing hoodies.

And day by day, shower by shower, more hair was appearing in the drain and in my hands and on the towel after I towel-dried my hair. The color of my skin was fading. My hair was becoming so dry, it was practically water repellant.

I went to the dentist. Honestly, I hadn’t gone for quite some time. The dentist expressed grave concern at the bone recession. I was getting to be “long in the tooth.” He asked me to see a doctor and get tested for diabetes – he also commented that the condition of my teeth themselves don’t match this periodontal disease (two unremarkable cavities – very small – one filling didn’t even require novacaine). He made it sound like the proverbial clock was ticking, like my teeth would gush out of my mouth at any moment. I was rattled.

My mom took a picture of me finally and showed it to me. I saw someone who looked gray. A pale gray hue had taken over my face, but I was grayer than that. It had to do with my energy itself, my aura if you will….

And so I saw a doctor. He did all kinds of blood work and decided I was hypothyroid. This was puzzling. I mean, there’s overweight people in my family but it’s because they love food. There was never a history of glandular issues.

So he put me on levothyroxine and there was a parting of the heavens. Day 1 and 2, I had a crushing headache. I called the office and the assistant got back to me with the following info: your blood pressure is going back to normal, of course you have a headache. I was warmer. My energy level was restored. ALL was good. That was easy!

I was a better employee. Waking up wasn’t a problem. I wasn’t passing out on the couch. I was playing outside with my son. Life was good. This is IT.

I went back for followup and there was an intern there with my doctor, a benign gentleman from India. My doctor tapped my knee with a hammer and asked the intern if he “saw that.” The intern chuckled and nodded.

“Saw what?” I asked. My leg kicked up like it was supposed to.

He explained that people with low thryoids have slow reflexes. The leg goes up as it should, but its descent is very slow. We just can’t help it. He demonstrated by tapping my knee again. It was eerie. Up fine, down slow. What a neat parlor trick.

Hypothyroid. I could live with that. With meds, the tiny bit of weight I gained came off. I was warmer. I was livelier. Wow, what a stroke of luck. I should have listened to mom sooner. I thought about how many months I had let the quality of my life slip away virtually unnoticed. Thank God that’s behind me now.

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Dr. Jones – Not All Doctors are Obstacles to Treatment

Many of our stories go something like this: “It took so long to get diagnosed.” “I didn’t have the bull’s eye rash, so no one believed me.” “The doctor said I was just depressed.” “I am not a deer hunter so I’m not considered a ‘high risk category’.” “By the time I realized I had Lyme Disease, years had gone by ….” “My doctor said Lyme Disease isn’t real.”

It’s maddening, isn’t it?

If you’re not familiar with the “controversial” Dr. Jones of New Haven, CT. then you should be. It’s nice to hear something inspiring, something about competence and courage.

Here’s some links:

And a homepage that raises money for his legal battles and stands as a testament to the great work he does:

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