Lesson 852 – Lyme disease Thursday – the tests are in

all this trouble from this little guy

all this trouble from this little guy

The primary complaint is tendonitis – in my feet, Achilles tendons, knees, right elbow and right shoulder. I mean come on, right? How much tendonitis can one person have?

It must just be that I’m getting older and I can’t handle the thought. Except that there are days when I can barely stand up in the morning due to the pain in my legs and feet.  I stumble when I get out of a car for the first few yards.  How do you explain that? I can accept getting old all I want but it still doesn’t help my feet or the shooting nerve pains that I’ve started to get.

And then I started with muscle twitching. In my lower legs. Those muscles dance throughout the night.

Then things like headaches, forgetfulness, digestive issues. One thing after another.

Surely I can’t be making all of this up.

But still it was never enough to get me to the doctors to have it checked out. After all, one day I’d have pain in one area and the next day it be fine and the pain would be somewhere else. Even I knew my doc would look at me a little funny and say something like “are you under a lot of stress lately?”

Well yes, I do have stress but no more than I’ve had throughout my career of having 6 children.

I mentioned my tendonitis to the kids’ Lyme doctor: Doc Holiday for purposes of this blog, could you just rule out Lyme before I go get things checked out, I asked him. It had gotten so painful that I was ready to finally do something about it, but first I wanted to make sure that it was not Lyme related.

Because if I went to an orthopedic surgeon, I guarantee that they would not check for Lyme.

And what if it was? I mean, what if…?

As a journalist and someone who is active in the Lyme community, I knew that muscle, joint, and tendon problems are a hallmark of Lyme.

I didn’t have the debilitating symptoms of Lyme that others have reported, but what if, I were on my way to them. Even with rest and anti-inflammatories my symptoms seemed to be getting worse and something new was being added to the list almost every day.

It made sense to have me checked and so my blood was drawn

Because of a minor clerical complication, it took 3 weeks to get my labs results (it normally takes 7 – 10 days.)

In the meantime I broke out with a painful rash that screamed down my right leg. On day one, my primary doc called it shingles, on day 2 she called it “unknown rash.”  How many times have you had a rash that was initially mistaken for shingles?

 Since that rash, I’ve had sciatic nerve irritation running down the length of my leg and my foot is completely numb.

Weird, right?

And then I developed a blister (I kid you not) that covered about a third of my eyeball. That has resolved but now I’m left with constant twitching of my eyelid.

I know, another weird event.

If I didn’t know better, I’d lean toward MS, ALS, RA or some other type of auto-immune disease because that’s what an auto-immune disease does, it attacks the body. It destroys things in its path.

But so can other things.

And here’s the thing I’ve learned from having 4 kids who have tested positive and who are being treated for Lyme:

The definitive picture of Lyme is having weird things happen that don’t neatly fit into a pre-determined box.

  • That rash? It looked like shingles so they ended up calling it a variant.
  • My eye? Must be allergies (even though I’ve never had a problem before in my life)
  • My tendonitis? Might be due to weight gain and definitely stop wearing those flip-flops.  

That’s right, let’s force (shove) it all into a box that’s familiar, it’s much easier that way.

But was it all really so easy to dismiss? I’ve always been healthy, active, and have watched what I eat. Is it really normal to feel so bad – all the time?

After having 4 kids who tested positive for Lyme and who all showed different symptoms (skin rash, fatigue, muscle pain, joint pain, brain fog, stomach aches) I suspected that perhaps it wasn’t just my age that was causing all of these problems, and just like the Grinch figured out at Christmas time, perhaps it all meant just a little bit more.

Just what if all of these weird things happened because *I* was infected with Lyme? At this point, the only worse thing than having a positive Lyme test would have been to get a negative one.

Lyme, once identified can be fought.

The other day, I got the call, the test came back positive.

My blood work was done at IGenX lab in California, the IGM results were negative but the IGG results were positive. What that means is that I *probably* do not have an acute infection but that I *probably* have a chronic infection.

You see Lyme is a tricky little bacteria that can hide in your body and form cysts. If you’ve had it long enough your body no longer develops certain antibodies against it. That’s one of the reasons why it’s so hard to identify by blood work (we’ll go into other reasons at a later post.)

Here’s a pretty decent explanation of what’s going on from  http://www.anapsid.org/lyme/wb.html

IgM antibodies are the first antibodies to be produced in the body in response to an infection, and is produced in great quantity. IgM antibodies are large, up to six times larger than the IgG antibodies. IgM antibodies, when present in high numbers, represent a new active infection or an existing infection that has become reactivated. Over time, the number of IgM antibodies will decline as the active infection is resolved.

IgG antibodies are produced once an infection has been going on for a while, and may be present after the infection has been resolved. Generally speaking, the presence of IgG antibodies to an organism when accompanied by a negative IgM test for the same organism means that the person was exposed to that organism at one time and developed antibodies to it, but does not have a current active infection of that organism. When it comes to Borrelia burgdorferi (Bb), the organism responsible for Lyme disease, that is not necessarily the case.

To recap, depending on the numbers,

  • IgM is a sign of a current infection.
  • IgG is a sign of a current infection, or of a past exposure to or past infection by the organism.

It’s tricky though; Doc Holiday was quick to let me know that it can be different with each person and that the lab tests must be balanced with symptoms. However, based on my results and on my symptoms, he decided it made sense to treat me with antibiotics.

Although he didn’t do any blood work to confirm this on me, he’d done previous blood work on the kids that showed they are all gluten sensitive. I’ve also always known that I’ve had issues with dairy and so while I’m being treated for Lyme, Doc H advised me to be on a gluten, dairy, sugar, and alcohol free diet.

The less stressors on my body, the better equipped my body will be to get to the job of healing itself.

Besides, that kind of a diet sounds like it might be tough, but when you come down to it, it’s a lot of rice, vegetables and meat. Basically, it’s a diet of very clean food – we should all be so lucky to be prescribed a diet like this.

So here’s the summary:

  • Call me a Lymie – cause I’m positive.
  • I’ve made a list of all my symptoms (some, I admit, are probably due to aging but I still included them) and will keep track of any that may fall off the list as I get treated.
  • I’m ready to go on my gluten, sugar, dairy, alcohol free diet.
  • And I’ve started my antibiotic along with probiotics (at least 80 billion) 

I’ll be keeping you updated on my Thursday posts as to how things are going.

Disclaimer, this is an account of my Lyme symptoms and treatment, it is not intended to be used in the treatment of anyone else’s condition. Please consult and work with your physician if you think you may have Lyme.

Let me know if you have any questions about my Lyme symptoms and/or treatment, if I don’t have the answer, I’ll find someone who does.

***
Wendy Thomas writes about the lessons learned while raising children and chickens in New Hampshire. Contact her at Wendy@SimpleThrift.com

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10 Comments

Filed under Life Lessons, Lyme Disease, New Hampshire, Personal

10 responses to “Lesson 852 – Lyme disease Thursday – the tests are in

  1. My husband and I both have been treated for Lyme and live in CT. We were both treated early after a relatively fresh deer tick bite. They are so small (the ticks) that you can hardly see them, but the rash that followed was classic. My blood test came back negative because that is what often happens after a “new” Lyme infection. Was your test standard? or was it a special test that determined the IGG and IGM? or was it the lab that was significant. I’m asking because I have an adult daughter with some symptoms. No I am not using you as a medical reference, just an informational one. It’s always better to know a little when you go to your doc. Thanks for the info you posted.

    • Wendy Thomas

      What’s interesting is that I grew up in Connecticut and we always had a dog. Ticks were a part of life for us. Looking back, who knows when I first got infected.

      With regard to your questions about testing – my blood work was done at IGenX lab in CA. You have to have your blood drawn on a Monday or Tuesday and then have it Fedexed out to them. Because we only suspected Lyme (and not a co-infection) I was only tested for Lyme IGG and IGM – the cost was about $200 and it is *not* covered by insurance.

      Interestingly when I developed that strange rash a few weeks ago, one spot had a very clear bullseye around it, so clear that my primary doc ran a Lyme test which came back negative. When the results came back, she let it go because of the negative result.

      What she should have done was to treat me with antibiotics (any bullseye rash should be treated) and asked me to come back in 6 weeks to retest. I didn’t push the issue because I knew that my blood was already being tested elsewhere.

      My point is that the “routine” tests used by regular docs are woefully inadequate. You need to look at the whole picture and not just a test result or a symptom.

      Good luck with your daughter and continued health to you and your husband.

      Wendy

  2. sue

    Wendy I can totally related to everything as this has been my life since my mid 30’s and didnt get a positive lyme test until my late 40’s… after awhile you start to think you are going alittle crazy or becoming a hypochondriac… I know I am not…and I know what it is to look FINE on the outside…beside limping some days and be a mess on the inside………..xo

    • Wendy Thomas

      That is exactly one of the reasons why regular docs find it difficult to treat Lyme. On the outside I look fine. I’m keeping up with my work, I’m even (attempting :-)) to play some tennis on the weekends. What they don’t see is the agony I feel at night when it’s time to go to sleep and muscle cramps take over or they don’t see me saying no to a car trip because I know that if I sit that long, walking will be difficult when I get out.

      It’s a strange illness indeed.

      Wendy

  3. Karen

    I can sympathise with the tendonitus, I’ve had it for about ten years and like you, didn’t really bother with it until I mentioned it at a medical check up. I’m now at physio every two weeks, cant honestly say its made any difference yet but the Physio says it has. Dont know if we get Lyme in the UK but actually alot of your symtoms are something I suffer from aswell that I also put down to old age. Maybe I should get them checked out!

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