The Learning Curve and the Lymie Fastball


We’ve all heard those age-old riddles…”Which came first, the chicken or the egg?”…”If a tree falls in the woods and no one is there to hear it, does it make a sound?” Well, I have a new one for you: “If we don’t know how to accurately diagnose and treat a disease, how can we say that we truly cured it?” At this point in time, there is not one definitive or even highly accurate test to diagnose Lyme disease — if there were, then, shouldn’t we be able to use that same test to determine if someone is “cured?” But we can’t. There is not even one widely-accepted foolproof protocol that everyone is directed to use. In fact, it would seem that every doctor has their own idea about how to treat Lyme disease. And every patient has their own set of symptoms and problems – that changes, often and unpredictably.

I want a live medical feed hooked up to Jenna. I know that sounds odd,but I just wish there was a way to record all of her ups and downs throughout a day, like they do for stocks on Wall Street. Then at the end of the day we could look at her numbers and definitively say, “You finished the day strong, despite several early setbacks, and you are expected to remain strong through the end of the week,” or “It was a weak day but hopefully a major influx of meds will speed recovery.”

I’ve talked to so many people who are either dealing with Lyme disease themselves or have a loved one who is suffering. I’ve had to learn not to cringe when I hear of some of the treatments and statements made by doctors — and I’ve had to learn to qualify my opinions with , “Well, I’m not a doctor, but…” One friend was told that 30 days of antibiotic would “cure” the Lyme disease and that any symptoms/issues after that were just a part of the healing process. This same friend looked at me cluelessly when I asked if they had tested for co-infections. One friend has a daughter with pretty severe neurological issues and the only antibiotic their insurance will approve for treatment is Doxycycline, which can’t be taken orally in high enough doses to cross the blood-brain barrier to effectively kill the spirochetes now buried in her brain. So they have to resort to treating the effects of the disease: OCD, rages, insomnia, bone-deep fatigue, and more — often with much stronger meds than what would be used to actually treat the disease.

Detoxing is another huge topic of discussion among Lymies and their loved ones…I could just scream when I hear of people, kids especially, on treatment who are truly clueless about herxes and detoxing – not because they can’t learn about them, but because their doctor or nurse never told them what to expect during treatment and how to manage it. I thank God for other Lymies who have shared their experiences and knowledge with us and helped make our journey a little less rough.

Jenna is continuing to hold off on antibiotic treatment for now and is working to boost her immune system and treat herself with supplements, rifing, and reiki. Am I worried? Sure. I don’t want her to backslide. Should everyone do this? Couldn’t tell you; just know that it was tough call for this lady. It’s been an eye opener as well. My med school bound son and his girlfriend were talking last night about some of the “supplements” Jenna is taking; I had to smile (to myself) when they agreed with my analogy of big pharma to snake oil potion sellers of days gone by. When those potions didn’t do the job, what did people do? Head over to grannie’s for a natural poultice. When did we give up all of our authority to treat ourselves to insurance companies and big pharma?! Learn about Lyme!

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3 Responses so far »

  1. 1

    Leslie said,

    Hello,
    I just discovered your blog, and have already read many of your posts in one sitting. I look forward to reading the rest soon!

    I’m also the mother of a teenager with lyme (and co’s, most likely), and have recently started a blog. Would it be OK if I add the link to your blog on my page of lyme resources? If not, let me know, please!

  2. 3

    Leslie said,

    My blog is

    lymeblog.blogspot.com


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