The Great Lyme Debate

Over the past few years, I have considered the possibility of Lyme disease (LD) as the cause of my problems. Fatigue, body aches, sweats...all come with Lyme territory.

The other night I watched an episode of "Mystery ER" (lame, I know...) and saw the story of a woman with exactly my symptoms. I watched riveted - is it possible that this could be what's wrong with me?

After years of losing her life to feeling chronically awful and being diagnosed with depression, the woman on the TV show was finally diagnosed with chronic lyme disease and was treated with intravenous antibiotics...by the end of the episode, she had fully recovered.

Before I was sick I spent a lot of time in the woods hiking and rock climbing. There were plenty of opportunities for a tick to get attached to me, although I don't remember ever seeing one. To date, I've been tested twice and found to have a negative ELISA. That should be the end of the story, but is it?

A recent Canadian headline told of 13 people who were tested for Lyme Disease (LD), for whom the results were Interpreted Incorrectly. This is no doubt a black mark on the Winnipeg testing service, but probably not much for the average person to worry about.

What may be of more interest to the public is the possibility that there are thousands of misdiagnosed cases of LD, cases not found because of faulty testing and a resistance in the medical community towards the idea of a chronic LD. ( A study of Connecticut doctors found that only 2% believed in the existence of chronic lyme disease and provided treatment).

Lyme Disease, in its early stages is well recognized as a valid diagnosis. However, there is disagreement about the reliability of the tests (which are performed in Canada by government laboratories). And disagreement about the validity of the disease itself (see Proof That Chronic Lyme Disease Exists, 2010)

Using the CDC criteria, Canada uses a two-step process that begins with a screening ELISA, which, if positive, is followed by the Western Blot. A 2010 literature review found that "Due to B. burgdorferi strain variation and other factors (see following sections), the ELISA for LD has only about 50% sensitivity". Further, a 2010 Slovakian study found that that all of the 32 patients in their study "had specific antiborrelial antibodies confirmed by using the western blot in spite of negative ELISA"

I was particularly interested to learn that one study found a link between a positive ANA and LD, saying, "Patients with disseminated LD often have positive antinuclear antibody tests with titers as high as 1:640". Hmmm...Sound familiar?

On one side of the fence, there are patient advocacy groups who believe that LD is under-diagnosed and under-reported. They guard in secrecy the list of "Lyme Literate" physicians, lest those doctors be censured by their medical colleges.

On the other side are the physicians; left to make sense of patient's vague symptoms in the absence of clear diagnostic tests.

From my perspective, there are some serious questions about LD that Canadians need to be be asking.

• If chronic LD is a real entity, shouldn't we be able to test for it conclusively?
• If ELISA is unreliable, then why are we using it? Why can't Canadian patients request (or self-pay) for the superior Western Blot test?
• Are the risks of antibiotic treatment so high that they truly outweigh giving self-diagnosed patients the benefit of the doubt?

If the medical community itself can't figure this one out, what hope do patients have of making sense of this issue?

And still, the "what if" questions haunt me...

• What if my illness is treatable?
• What if I don't always have to live this way?
• What if this could be treated, but no one ever finds it?

Do I believe the ELISA? Or do I head to the USA for tests that the CDC tell me might be offered by unscrupulous labs?

*sigh...*

An 'overnight' cure?

I saw another doctor yesterday. This time an ENT.

I told him about the headaches, the brain fog, the sleepiness, fatigue...and the constant pain around my eyes (sinus area).

He said my sinuses looked great on my recent MRI (I love electronic health records). And then he asked me if I have ever been evaluated for obstructive sleep apnea. Apparently, it could account for ALL of my symptoms.

Sleep Apnea? Wow. What if everything I've been going through could be explained? And treated easily? What if the past four years of my life were a bad dream?

The only hesitation is that I don't have the typical risk factors associated with OSA. I am not overweight, not male, and DH has never complained about me snoring...Still...my sleep study is scheduled in two months.

I hate to get my hopes up, but if this is "it", I will be eternally grateful.

On the floor, sleeping

For the past week I have been in a hypersomnolent trance. I have come to realize that the word 'fatigue' doesn't do any justice to what I am experiencing.

Have you ever taken Benadryl or Gravol? Any medication which induces sleep that you just cannot fight? That's what I am feeling.

Last week, I was too sleepy to take care of myself or my animals. I packed up my bags and my pets and moved over to my mother's house for a few days until DH got back from his trip. Even with all of her health issues, she could at least walk the dogs. And I slept...and slept...and slept.

At one point, I went to the kitchen to talk to my mother. I was so tired I sat down on the floor. But I was too tired to sit, so I laid down...and fell asleep on her travertine tile.

I flip between hot and shivering, but my temperature is almost always 97.2 (not even normal, let alone fever).

This, my friends, is not normal.

Outsourcing Pregnancy?

So...a while back I went to see a high-risk obstetrician to consult on the possibility of pregnancy. It has been almost four years since I miscarried and my mid-thirties turned into my late-thirties.

Quick health review:

- 3 antidepressants (since major depression following miscarriage)

- factor V leiden

- hypothyroidism

- AMA (advanced maternal age)

The specialist told me that my psychiatrist had done me no favours in suggesting that we wait a year past the time when my depression stabilized, as AMA is the factor most likely to impact our ability to conceive.

DH was not thrilled about the prospect of another depressive episode, nor was he keen on the daily injections of Heparin. He proposed that we consider another option. One with no worries about my medications, no worries about blood clotting, no worries about delivery - hire a surrogate.

A surrogate? Really? Could we actually outsource pregnancy? The thought seemed more foreign that I could wrap my head around. I ran it past my mother (thinking she would be horrified) and she loved the idea.

I found a surrogate website and began reading about the ins and outs of this world and learning their vocabulary. I found out that I would be known as an IP - intended parent. The surrogate would be either for GS - gestational surrogacy, or TS - traditional style surrogacy. With a GS, the embryo has no genetic relationship to the surrogate, with traditional the egg of the surrogate is used, and is therefore her genetic child.

The laws in Canada about surrogacy are complex. Apparently it cannot be done for profit and must be altruistic. There are loopholes that allow IPs to compensate their surrogates for their expenses. To help manage the complexity, there are agencies that provide IPs with lawyers, contracts & potential surrogates....and I thought pregnancy would be challenging.

I still wasn't completely sold, but we decided to meet with the fertility clinic to discuss our options anyway.

The physician we met with was a breath of fresh air; she was blunt, direct and provided information without sugar-coating our situation.

I must look a little younger than I actually am**, because when she asked my age, her face fell in an instant. She went from an expression of hopefulness to one of "yeah, right" in a millisecond. Apparently late 30s is NOT the time to try conceiving.

Now I am fairly up to date on all of the statistics about age and risk, but I guess it hadn't truly been processed until this appointment. Apparently we have only have a one in five chance of having a healthy embryo in any cycle and a 50% chance of miscarriage using my eggs.

If we decided to use a donor egg (not allowed in Canada), the odds would be much, much higher. The doctor recommended finding a donor in her early twenties for optimum results. And even though I wasn't sure this was what I wanted, the odds being so stacked against us brought me to tears.

But the bad news wasn't over yet! Because of my history of depression and my blood clotting disorder, I am a BAD CANDIDATE for the fertility drugs used to produce more eggs in a cycle. Yup. I could clot and die or just sink into a depressive episode from which I may never make my way back to normal.

The doctor left to get some forms for blood tests and I burst into tears. My husband -being an overall-great-guy and a pragmatist- told me that this was exactly what he expected.

DH then took out his laptop computer and went to you tube to play me "Furry, Happy Monsters" by REM on Sesame Street. I assure you it is impossible to be sad with Michael Stipe singing to a group of monsters.

It appears then that having a baby of our own is out of the question; but if I am completely truthful with myself, I don't think I ever was ready to outsource pregnancy.

**this is due to botox, not my overall radiant health

Test Results...

For you wonderful folks who follow this blog, I'm sorry to have left you hanging on the outcome of my last doctor's appointment. The results are in and....

-drum roll-

*MRI was negative for demyelination = not MS.

I know I should be over the moon that I don't have MS, (and believe me, I really am happy not to have it), but that leaves me with No Diagnosis.

Or worse, the non-diagnosis of Fibromylagia - (which apparently means I am a bat-shit crazy with a personality disorder)

I couldn't write about this for a few days, because I mostly feel defeated. I feel ashamed of being sick with no objective indication of illness. I feel dismissed.

I don't know where to turn next. Do I just give up? Is this the way life is going to be forever?

Thanks to God for my wonderful husband (who loves me no matter how I wake up feeling each day), for my friends (who stick by me even when I cancel plans with great frequency), and for my mom (who checks in on me everyday hoping for good news...and buys me groceries when I am too ill to leave the house). I don't know how I would have survived the past few years without you all to count on.

* Actually, the reason the doctor didn't want to share the report in advance of our meeting was due to what she calls an 'incidental finding' of my cerebellar tonsils (WTF??) being 4mm longer than they should be. Apparently this is not something I should worry about. Who knew there were tonsils in the brain?