Lyme Disease: Stories From the Front Lines of An Epidemic – Alison E.

Alison Easton wrote this for me when I asked her about her Lyme story. And as it reads like an open letter and is in the first person and the declarative style, I will let it stand thus. I have made some minor grammatical corrections for readability but what you see below is one woman’s story in her own words.

Here is Alison.

*****

What is my story?

I don’t know if I even had Lyme.

I know that may sound funny way to start a Lyme story, but I’m a scientist. A scientist always starts with facts, you know … facts are the known.

To have had “Lyme,” we’d have to agree upon some diagnostic criteria that despite having read the CDC web page many times I still have a hard time rectifying between specific doctor’s diagnosis and exactly the criteria.

I had so many different opinions from so many accredited medical professionals who did nothing to help me that I have to say I’m quite stymied myself. I think I survived all this mainly as I was no stranger to the netherworld of undiagnosed malaise.

Ya know… that condition where you know something is wrong, you feel like crap, and yet every doctor can only suggest you exercise more?

In the first go around it was Hashimoto’s disease… an autoimmune thyroid disease where your body attacks your thyroid. At first, it’s primarily a very large goiter (yeah you have a big neck) with varying degrees of unease. It does not seem complicated right? I mean I knew my mother had it. My grandmother, and my great- grandmother too? My thyroid was so large I could barely swallow. Yet it took 3 years of different doctors and endocrinologists to finally come across someone who would say so you’re looking for a second opinion? Yeah, that would be me, please.

You see it’s well established that the lab values they test millions of people against every year are completely outdated.

It was also scientifically studied and cross checked that people with Hashimoto’s would eventually require thyroid replacement hormone and that early intervention with thyroid replacement hormone helps stabilize as well as hold off damage to the thyroid gland. Apparently, the first 5 endocrinologists hadn’t gotten the memo.

You see, I was no stranger to knowing something was wrong with my body and I needed help. I had gone through the health care system with something relatively simplistic and been completely ignored.

I had my lessons learned and all written down in my mind. “This won’t happen to me again,” I said.

I was so wrong.

In the spring of 2009, I gave birth to my youngest son Paul.

His conception was a complete surprise, and we still remark on how surprised we were, not on his being conceived, but on how happy we were to have been blessed with a second child.

It was what happened afterward that really shook my core.

I was prepared for my Hashimotos to act up, get worse. My endocrinologist was as well. Only increasing the thyroid medication didn’t seem to help any of my symptoms. My body ached. My bones hurt. I started to develop extreme arthritis through my hands, arms, feet, and legs. I remember waking up to hear my baby cry, crawling out of bed to the bathroom, using the toilet to drag myself up, all the while hearing my baby wail.

I had to get the strength up you see to pick him up.

There is nothing normal about hearing your child wail and being unable to immediately go to them.

Silent tears would stream down my cheeks and I’d will myself up to be able to stand up, walk to him, and pick him up.

Just thinking about it now, still, makes me cry. I couldn’t go to him if I tried.

The helplessness was devastating. They kept changing my thyroid medication until even my endocrinologist threw up her hands and said.. something else is going on.

Tests, and still more tests later would give me a very positive Western blot and a referral to an infectious disease specialist as I was nursing and no one knew what to do to me.

For example, the infectious disease specialist threw me out of the office with a “don’t even come here without a positive Elisa test.” Huh?

And so the see saw began. Family Practitioner, Infectious Disease Specialist, Family Practitioner, Endocrinologist, Family Practitioner, Neurologist.

My headaches by this time were blinding, day stopping events. My fingers were so swollen that typing on a keyboard was painful. Either doctors told me nothing was wrong with me or you need to stop nursing NOW, you’re killing your baby, or “Oh my God, take this IV line now.”

I had a 6-month-old. Really? Now? He does not take a bottle and just is starting to eat food…and please disregard the fact that I have no idea when I got this and I’ve already been nursing him for 6 months and I feel like crap – you can take your medical guilt trip – cause clearly you all suck – and stick it!

It [the disease] was all over the place, I hurt, I was confused, and all of them [the doctors] disagreed.

I didn’t know what to do. I have never not known what to do. I’ve been there, right? I stuck it out? Right.

Miracles of all miracles I met an acupuncturist/herbalist that I began to work with.

We began originally with the ideal that I’d work on weaning my baby while taking amoxicillin and then start more conventional therapy. The amoxicillin, of course despite being safe for the majority of bf infants, led to seizures in my little guy, and another round of health care horror stories.

I stuck with the herbalist/acupuncturist for 3 months and surprisingly felt better. The significant uptick in health, coupled with the complete lack of regard by the medical establishment, led me to continue the course.

9 months later, I discontinued the strict herbal regiment she put me on for Lyme. The headaches and joint swelling were gone but the fatigue, anxiety, muscles twitches were still there.

3 doctors later, gluten free, with strict nutritional supplementation schedule all gone and finally feeling awesome. I shouldn’t short change the latter struggle. This all took many doctors and time, as well as the acupuncturist, and was only the first part.

I just felt way better so it didn’t seem like such a struggle.

But basic things still confuse me… like how could I go to three different doctors with the same basic symptom.. .dude my muscles keep twitching.. .like seriously twitching.  I can see it in the mirror and at the first two end up spending $200/drop for testing with no answers and the third was like “Oh this is a magnesium deficiency.. did you say gluten intolerance? Make sure you take.. XYZ.”

Don’t get me wrong.

I am grateful.

For my Endocrinologist, Acupuncturist/Herbalist, and my final family practitioner for being so amazing. I’m sure if I knew them first, this might not have been a struggle.

I am hopeful

I see many people talking about all the challenges, options, considerations.

Some people feel empowered about Lyme.

I am frustrated.

I want to understand.

I don’t know where the thyroid, Lyme, gluten, nutritional deficiencies started and where they began.

I’m a scientist.

I want to understand.

I am also intuitive and that is why I’m a great scientist. My intuition allows me to explore contrary opinions, unanswered questions, give a big “aha” when experiments turn out differently than expected.

I’ll put forward all the hypothesis necessary. Maybe pregnancy just triggered this crazy autoimmune response? Maybe I’m crazy? Maybe it was all undiagnosed celiac disease? Maybe.

From the medical profession:

  • I have been told that my large protruding thyroid was completely normal.
  • I have been told that almost every symptom I could possibly conceive was psychological, a symptom of depression, or maybe even due to lack of exercise.
  • I have been told that I am crazy to be gluten free unless I’m formally diagnosed as a celiac disease.
  • I was told I most definitely had Lyme by 4 different accredited doctors.
  • I was told I never had Lyme by another 2.

And I have also been told that sometimes medicine isn’t a science, it’s sometimes an art.

I get that.. cause I’m a scientist. I get that’s tough. It’s hard to differentiate between correlation and causality. It’s hard to sometimes “know.” I understand.

But dude… what I went through wasn’t cool.

And you have to get that too.

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