Sunday, November 18, 2012

Lessons learned about Lyme

I haven't written for a long time and now I find a whole new system for blogs here on google. I can't decide if I like it or not. For now, I'll have to go with it because, hey, what else am I going to do?

I have a new mission. At least for the moment. And I want you, the random, or maybe not so random, cyber reader to get a glimpse of it. I've decided to take you along for the ride . . . that is, if you want to come.

This last August of 2012 I went from doing P90X everyday and feeling wonderful, to feeling exhausted and crappy. At first I thought I was having an Epstein Barr flare up, but I started to develop symptoms that just didn't jive with EBV.

My sister has MS and many of my symptoms were those of people who have MS so I made an appointment with a neurologist to get his opinion. Of course, he couldn't get me in for over a month. My husband, who is a plumbing contractor, happened to be at a customer's house who he just so happened to talk to about me, (not sure how I feel about that) and she just so happened to know an iridologist (someone who reads the iris of your eye and can tell what problems are going on in your body) and gave my husband the number.

By this time I was desperate for help so I made an appointment with her. I have to admit, I was a little skeptical at first but I really liked her and her easy going, comfortable manner. She used kinesiology to help pin point what the problem was and how to fix it.

Long story short, she said I had some sort of bacterial infection that was affecting almost all the systems in my body. Vascular, neural, my organs. She said my body wasn't sure what it was, but that it was something bacterial like a staff infection. It blew my mind. I had a staff infection?

She gave me a list of natural things to kill it. Colloidal silver and Oregon Grape, mainly. Happily I went and bought these things, hoping it would help me feel better. Within two days I felt worse. Little did I know, this is a common response in people trying to kill Lyme disease, which up until this point, I didn't know I had. It's called a Herxheimer reaction. I took the herbs for a week, then quit. My symptoms which had gotten worse lessened.

Then one day when I was feeling terrible, I happened to walk past my computer. I was so tired, I plopped down in my computer chair and typed in the words, "my body hums all the time." (that is one of my main symptoms)  A page popped upto a page where other people had similar symptoms, many or which said they were diagnosed with Lyme Disease. It got me thinking and I started researching Lyme disease. What I found amazed me. That same day I called my FP (family practitioner) to get a blood test for Lyme.

They couldn't get me in until the next day which just so happened to be the same day as my appt. with the neurologist. Long story short, the neurologist suspected MS, gave me an order for some blood tests including Lyme, and sent me on my way. I went straight to my FP, filled him in, and he ordered the blood tests.

Here's the bad part. I don't have medical insurance. We own our own small business and when the economy went south, so did our business. Financially, we're really struggling, so we cancelled every extra expense we could to save money, one of which was insurance. But at the time, a couple years ago, it was fine. We were healthy as horses. The blood tests cost $500.

Since then, I've done a ton of research, met others with Lyme who say there are only two blood tests to take to diagnose it. The Elisa, and the Western Blot. The one I had done was neither. And out of the two that are most accurate, 80% of the time they come back negative when the patient really has it. It's a hard disease to diagnose. In the test, they're looking for antibodies, not the actual disease. Anyway, my pathetic test came back negative which I knew by now it would.

So my plan now is to go back to my FP and get the test I need and hope that come hell or high water, they come back accurately. Oh, and here's the thing. I went back to my iridologist yesterday and she confirmed through kinesiology that I have Lyme.

I can only guess that she couldn't confirm it the first time because I had no idea what Lyme was. None at all. And how can my body, consciously or unconsciously, say I have Lyme if I have no idea what it is? All my body knew in the beginning was that there was some sort of bacterial infection (which is what Lyme is) infiltrating my body.

Here are a list of symptoms:

1. My body hums or vibrates or trembles (however you want to describe it) on the inside, all the time. It never ends, never stops, never goes away. Sometimes it is more pronounced than at other times.
2. Extreme fatigue
3. I'm super ditzy (brain fog) all the time.
4. Dizzy almost all the time.
5. Very forgetful.
6. My anxiety level has sky-rocketed.
7. Neck aches
8. In the beginning the tip of my nose itched ALL the time. It drove me NUTS!
9. Pressure behind my eyes, like my eyes are swollen or something, and are going to pop out.
10. Congested all the time, but I don't have allergies, never have, and it never gets worse or better.
11. Insomnia
12. Frequent headaches.
13. Sever neck cramps (once in a while) which I've never felt in my life before now.
14. Achy thumb joints, like arthritis.
15. facial twitching (at times)
16. Stomach aches (sometimes)
17. Weakness in muscles.
18. Irritable
19. Sensitivity to light and noise.
20. Burning, tired eyes.
21. Intermittent fevers, and hot flashes.
22. Achy ribs (at times)
23. Heart palpitations.

These are what I can think of off the top of my head, which are not normal for me. They are typical symptoms of Lyme Disease.

So, off I go on a mission to learn more about this awful illness, and to get a blood test that confirms what I know in my heart. . . that I am one of many who has contracted Lyme Disease, and I'm not even sure how I did.

I was bitten by a tick as a teen, but didn't notice recently any tick bites even though I've been in the mountains (at the time I began to feel sick). I did read that Lyme can hide for decades inside you until you're older and not as good at fighting off disease, but I don't know if that is my case.

Anyway, I'll keep you posted on my progress. It is my goal to write a bit about it every day. Sorry this one was so long. Hope I didn't bore you to death.


Murees Dupé said...

I am sorry that things have been so tough for you. I want to wish you and your family all the best and that you can get a diagnosis soon and a treatment that actually works. Best of luck and hang in there.

Karen Jones Gowen said...

Hi Melissa, nice to see you here on your blog again but not nice that you've been sick! I hope you can work out something with the doctor to get the proper testing and treatment done. And I hope it's not MS. I don't know anything about Lyme's except that my nephew had it for awhile as a teen. He's fine now, but I don't know what the treatment was.

Old Kitty said...

Oh my goodness! :-( I am so sorry to read about all these symptoms you're feeling. I hope you find a way to know for sure, I think you need to know!

You may wish to use this database:


It's free and it collates abstracts from peer-reviewed scientific/medical publications. You may not get the full-text but perhaps if you can, use your library to get them for you?

Good luck and please take care

Charlotte said...

I'm so sorry to hear that you've been having such a hard time. Awful.

There's another blog that I was reading awhile back, and the woman who does it has been diagnosed with lime. The blog is called, and she has a subject heading for posts about lyme, called "when life gives you lyme".

I thought you might find it helpful.

Chuck said...

Sorry to hear about your trials Melissa. That sounds really terrible as an all the time feeling. I am sure there is something homeopathic and natural that can help. Since it is sort of a hobby of mine to do that kind of thing, I will let you know what I find. Take care.

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