Lyme Disease Update & Rant

This photo reminds me of Lyme Disease.

For some of us it's more than debilitating illness - it's crushing confusion too. I remember showering and forgetting what I'd washed. Many times I was too weak to dry my hair; I went back to bed in towels.

Finally I got so sick and confused I went days without showering at all. (My ex-bf is a saint for taking care of me through all this.)

Lately there is heightened awareness of Lyme Disease.

All I can say is ABOUT DAMNED TIME.

When I first got sick I went to Michigan's DNR site to see if it was possible I had Lyme. According to that site, there was no chance. It did not exist in that area.

If the site had been accurate, I would have pursued correct treatment years earlier. But no, it took strange circumstances after two years of personal hell.

After I was finally diagnosed, a friend who works for a pharmacist asked him about it. He said Lyme was "deliberately under-reported because the state doesn't want to damage the tourism industry."

The DNR has since changed the website. Too little, too late. The undiagnosed Lyme turned my life upside down and I lost EVERYTHING.

An online Chronic Fatigue support group saved my life by leading me to diagnosis. I'm surprised they still remember me ... today I got an email.

"Hey there,

I have been having a weird symptom for about a month now and the CFS group thought you might know. I have been having this weird tingling in my back frm my shoulder blades down to the lower part of my back. It is a feeling like when your arm is asleep and is beginning to wake up. It is a numbness and tingling kind of feeling.

It is not painful, just annoying at times..........................It goes on for hours, and I wondered if you had any of these symptoms with the Lyme,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,"

I'm putting my response here in case anyone reading knows someone who's living with Lyme or similar illnesses.

"Hi Susan

There was one day when I forced myself to drive somewhere and I started losing feeling in the fingers of both hands. The numbness started crawling slowly from my hands to my elbows ... it was surreal. I drove straight to ER and they wrote it off as stress. (I thought I was having a stroke.)

That same week my shrink said my face was crooked, like I had Bell's Palsy. Someone in the group - Matt I think - saved my life by saying YOU HAVE LYME DISEASE. FIGURE OUT HOW YOU GOT IT.*

I'm doing great down here, my health is fine. I can't handle cold weather AT ALL. If we have a cold night I nearly cripple up.

You can forward this to the group if you like. In fact I wish you would. If anyone wants to talk they're welcome to write.

Part of what got me well was using my anger constructively. I made some changes:

I threw out all my meds. (I was furious that nothing was working - and actually felt a little better within a few weeks. This is me, it's not for everyone, but my undies are still in a bunch about pill pushing doctors.) Now I take vitamins and ... it just occurred to me, I never even get headaches any more. Maybe that's because of everything else I'm doing.

I moved to cleaner air and warmer temperatures. Not everyone can do that but it's part of what saved my life.

I treat my body like a temple - healthy fruits and veggies from a local farmer's stand and ZERO fast food. My diet is mostly vegetarian with eggs and dairy. Sometimes I slip and have fish or poultry. (I can buy fresh fish and shrimp from a fisherman around the corner ... so I know there is zero processing.)

Yoga has made an enormous change. ENORMOUS. It has been about a year I think. One of my friends from class said "I remember those first few times you came; I didn't expect you to last one full class." I could hear my joints grind. But I stuck to it.

The most important thing is find the right teacher. Mine is very gentle, asks what your issues are and makes accommodation for weaknesses.

Now I'm a 58 year old physically functioning at 35 year old levels in class.

I enhance the yoga with walking or bike riding. (Get outside, get sunlight.)

This is almost the best health I've been in in my life. The most flexible, the most active.

If I knew back then what I know now, I would have done the IV antibiotics and taken greater care with everything that went into my mouth, from liquids to solids; garbage in, garbage out. Food can harm or heal. I remember the depressions, the "comfort food" - or sometimes eating nearly nothing and still gaining weight. When we're sick our metabolisms go to hell.

And I would sign up for a gentle yoga class with an understanding teacher. I have gone from someone whose joints creaked getting out of the chair - someone who was so weak I can remember my feet literally flopping over and dragging on the worst days - someone who fell down the stairs about three times - to someone who can just about wrap her ankle around her neck.

Imagine ... go to a studio and find the right teacher. I can't stress that enough. There is even chair yoga for those of us who got totally rusted out from illness.

MOVE. Even (especially) if you don't want to. Sit and die or move and live.

I practice Iyengar yoga. It uses props for people with weaknesses, injuries and other limitations.http://en.wikipedia.org/wiki/Iyengar_Yoga

Sorry, I know that's too much but I hope you'll send it to the group. I almost have survivor's guilt, I remember how much it sucked to live that way and I never want to be in that position again!!!"

Susan - I suspect a few of the yoga positions we do would relieve that back weirdness. One of the first things we do in class is lie down on the floor on our backs and pull our knees into our chests - then rock back and forth. It relaxes the spine. We also do back stretches over bolsters that are incredibly relaxing/healing.

We don't walk out of class ... we pretty much float.

(End of email.)

*
How I got Lyme? I was sitting in my ex-boyfriend's family room watching Sex and the City. He was on 5 acres with deer. My Bouvier ... who was lying at my feet ... liked to go out back and chase them.

Apparently the deer tick crawled off her, onto the recliner and into me. I felt my flesh move, clawed "the thing" out with my nails and it was full of my blood.

I had no idea it was a tick.

I got sick a few months later. During the two years of crushing illness, not knowing what I had - my mother started talking funeral arrangements.

Lyme Disease is that damned bad.

If you know anyone who has strange symptoms, please have them investigate Lyme Disease.

I've been blessed to be able to help bring a few others to diagnosis and treatment. In my case the IV antibiotics helped mentally, but I'd had it too long. It took a move to a warmer climate combined with the afore-mentioned lifestyle changes to turn my health around.

My long illness inspired my book:

Sick Mick's Guide to Selling Antiques & Collectibles

Staying busy mentally - or at least trying to - kept me from drowning in despair.
http://www.amazon.com/gp/product/0978739302/ref=s9_simz_gw_s8_p14_i1?pf_rd_m=ATVPDKIKX0DER&pf_rd_s=center-2&pf_rd_r=1Z0P54T7QNPJB2KB8VQ8&pf_rd_t=101&pf_rd_p=470938631&pf_rd_i=507846

Self-Diagnosis and "Cyberchondria"

Cyberchondria; I didn't know there was such a word. The NYT has an article on it. (I'll include a link a little further down.)

When I got sick five years ago (is it that long ago? I'm losing track of the years) my cyberdiagnosis was either MS or Chronic Fatigue Syndrome.

My test results churned up a hint of Epstein Barr Virus - so my doctor said no, not CFS - EBV. But everything I read online said that EBV and CFS are way similar symptomatically. In fact, the online research said that when EBV does not go away it BECOMES CFS.

In hindsight, in my mind - CFS is the garbage can of all diagnoses; that's what doctors say when they DON'T KNOW.

My symptoms were life-altering. I joked that I had Roseanne Barr Virus and that's why I was swearing so much.

After being desperately ill for two years, my symptoms started morphing. My face got lopsided when I was especially ill, and my fingers were starting to go numb. My doctor went from using the term "chronic EBV" to "diagnosis unknown."

He had given up on me.

My online support board was my lifeline and home base in my search for answers. I told my friends about the new symptoms and two told me I definitely had Lyme Disease. Those people were experts. They were all smart and sick with nothing but time on their hands.

I was like "WTF is Lyme Disease?"

So I went back online to Michigan's Department of Natural Resources site to see what a deer tick looks like. Well, it looks exactly like the wriggling critter I clawed out of my leg three months before I got sick.

Mine was second from the left in the photo lineup. I remember screaming when I realized the thing "on" my leg was IN my leg. I clawed him out - he was so full of my blood he was the size of a pea and nearly IMPOSSIBLE to kill. I slammed a 4" phone book on him and jumped on it.

I was not walking in the woods. I was sitting in a LaZBoy watching Sex and the City at my ex BF's house. He has five acres with deer out back. My Bouvier must have brought the critter in on her fur. We're not talking wilderness, we're talking a suburban setting where you could walk to Barnes & Noble.

All a sick person really needs is the internet - and THEN a doctor to find solutions to your self-diagnosis. Because that's EXACTLY how my illness went down.

I printed out a photo of deer ticks, circled the culprit and handed it to my MD. He immediately put me on IV antibiotics. Just a few years too late, of course. But late is better than never.

The article in the NYT is pretty funny. It's like "get a headache - go online and decide you have a brain tumor."

But I have to tell you - in my experience, a smart person with time and internet can meet or exceed whatever a halfhearted MD's got in his magic bag. Sick people MUST get involved in what's wrong with them or they may never find real answers.

Anyway, enough ranting. Here's part of the article:

"Mr. Horvitz said that in addition to his interest in creating a Web search tool that would give more reliable answers, the research was driven by clear memories from his medical school education of what was often referred to as “second-year syndrome” or “medical schoolitis.”

He said he remembered “sitting on a cold seat with my legs dangling off the examination table,” convinced that he was suffering from a rare and incurable skin disease.

While the doctor was out of the room, Mr. Horvitz said, he took a look at his medical chart and saw that the doctor’s notes read, “Eric is in medical school, and he has been reading a lot.”

The researchers said that Web searchers’ propensity to jump to awful conclusions was basic human behavior that has been noted by research scientists for decades. "

Click to read the full article.

http://www.nytimes.com/2008/11/25/technology/internet/25symptoms.html?th&emc=th

Trapped in Paradise

The evening I took this photo on Fort Myers Beach the air temp, water temp and my body temp were about 98.6. It was SURREAL. I have never felt or seen anything like it.

Trapped in Paradise.

I know, that sounds like a strange concept.

Went to yoga yesterday at Health & Harmony on McGregor and my Canadian friend Connie - a nurse and former professor - joined me for the first time.

She has fibromyalgia, I have Lyme Disease ... Gretchen, another friend at yoga, has CFS.

Gretchen and I have had significant relief from Iyengar Yoga. (Iyengar still teaches in his 90s. In his youth he was so ill he nearly died. His type of yoga is especially gentle and employs props.)

http://www.bksiyengar.com/

For Michigan friends - Iyengar was introduced to this country by a woman in Ann Arbor. When I sent my son a CD, I told him the CD was going back where it all began.

Anyway ... it is my hope that Connie will find some relief from this program. She did sign on for a series.

During our session she could hardly kneel and I heard her joints crack. I was very worried - and surprised since she has been investing a lot of time in other exercises.

Afterwards we went to Sakura on McGregor for soup & Chinese.

Connie told me she went to Washington DC last week to put out feelers for a new job. She seemed optimistic, but I knew she's at least as sensitive to climate change as I am. I asked her if she could survive up north again and she broke down and cried. (Our poor waitress thought there was something wrong with her General Tso's.)

Truth is - it doesn't matter if she can find a job there, she can't handle it. She said she was so cold she had to stand in a hot shower until she was warm enough to move again.

What a nice concept, to imagine you could move anywhere for work. It's just an unrealistic dream for some of us.

The temperature dropped 25 degrees in the last 24 hours. I am too cheap to mess with the thermostat and I'm damned if I will live in Southwest Florida and EVER use the furnace.

This morning I woke at 9 feeling like a stone. A stone in pain.

It's Sunday, I told myself I could sleep another 20 minutes. I finally limped downstairs and looked at my watch, thinking it had broken. It said 2:15.

I had breakfast well past lunchtime, fed the dogs, took them outside and had to go back to bed. I am 100 years old. Everything hurts. Thankfully, it's Godfather Marathon day on AMC and I caught True Blood and Californication tonight.

At this exact moment I think I'll be OK to go to work tomorrow. Everything I watch on cable ... I think about how I can apply ideas to our advertising campaigns. So it's not like I'm a 9 to 5-er. It's like they rent the demented portion of my brain 24/7.

But it's embarrassing to be coping with this shit, it makes me seem my age at the office. I am the oldest one there - although I don't think I seem like it.

I have enough vacation time left that I could easily go back to Michigan and see family over the holidays - but it would hit me so hard physically, I fear for the repurcussions. Last time I went north - August - I survived the giant temperature changes up there, came home and was sick for two months.

It saps my energy, leaving me susceptible to bugs and viruses.

My granddaughters are growing up without me. I have friends I'll probably never see again.

If I ever have to go back there to live year-round, I imagine I would be like a cripple. Or - like Connie and I agreed - we would shave 15 years off our lives.

It just sort of amazes me that nobody ever talks about this, about people who have to move here because they cannot survive in the cold.

Or - on a more positive level - about the people up north who endure cold and darkness who could be living fuller, more active, FAR more productive lives down here.