posted
After 10-plus years of being symptom free I've been knocked on my rear-end by Lyme again.
About 4-6 weeks ago I started feeling really fatigued when we were on vacation. I'd fall asleep around 7:30-8:00 at night and the only reason I'd wake up at 7:00 or so was because my back hurt too much to sleep.
Things didn't get any better when we got home and then came the stiff necks, sore knees, numb jaw, and heart palpitations -- an all too familiar scnenario.
Fortunately I knew from past experience to not pass these symptoms off as mere stress. I called my LLMD for an appointment and she agreed that LD has more than likely resurfaced. She gave me a script for antibiotics and ordered a CD57 Panel.
There was one line on the panel that was way off and it was this one:
Abs. CD8-CD57+ Lymphs
My result was 36L /uL (whatever that means) and the normal range is 60-360. The LLMD attached a note saying this was compatible with active Lyme.
I'll tell you one thing that's made a big difference between this time and last time and that is having taken magnesium glycinate for several years. The anxiety and heart palpitations I'd had when this surfaced years ago were paralyzing. But I am able to function this go-around. They're there, no doubt about it, but they're manageable.
So take your magnesium, it makes a difference!!!
The LLMD put me on Omnicef. I didn't want to deal with Zithro tearing up my gut again so I asked her for a different drug. I am in the middle of a herx at the moment and am managing OK so far.
The only things I can trace this recurrence to are one of two bites I received over the summer. I did see the LLMD for both so both are documented.
Lawdy, this disease sucks! And now I get to fight with the insurance company if I don't get well fast enough to their liking.
-------------------- Linda Posts: 749 | From New Hope, PA | Registered: May 2002
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posted
It's good that there's such a thing as Lymenet because it's going to make it a lot easier to deal with this time around.
There was no LymeNet when I had it the first time. At times I felt like I was going nuts because I felt so isolated. At least now I know I'm not alone.
It's 1:30 in the afternoon and...no heart palpitations today!
-------------------- Linda Posts: 749 | From New Hope, PA | Registered: May 2002
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
I am sorry you got sick again.
At least this time you knew what it was and where to go to get treatment... that seems to be a good chunk of the battle.
Glad to hear you havent had any heart palpatations today... I always found them to be a bit scary.
posted
Based on the results of the CD57 it doesn't appear as though I have any co-infections complicating the LD. My CD57 counts were low, which is compatible with active LD. Had they been high, then it would have indicated a co-infection. At lease that's what I understand from the handout I received about the test.
But I don't put anything past this disease so I'm listening very closely to what my body is trying to tell me.
I'll find some way to kick its butt again!
-------------------- Linda Posts: 749 | From New Hope, PA | Registered: May 2002
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
The CD-57 is FAR from perfected and it should not be used to rule out coinfections.
It is extremely extremely unlikely that you have ONLY Bb. Especially if you were bit in PA. The ticks there are carrying Bartonella MORE frequently than Bb and they have high incidence of babs and HME in tick in PA.
I wouldnt risk my health on the CD-57 results. It should help you monitor progress along with symptomology, but should not be used as a way to rule out other pathogens.
Do a search here and see that most of us score below 60 and we have more than Bb.
Posts: 1950 | From New Mexico | Registered: Sep 2001
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quote:Originally posted by trails: It is extremely extremely unlikely that you have ONLY Bb. Especially if you were bit in PA. The ticks there are carrying Bartonella MORE frequently than Bb and they have high incidence of babs and HME in tick in PA.
Thanks for the heads up. I'm not sure how this resurfaced. The original bite I got was when I lived in NJ, near the shore. The symptoms are identical.
I am stable for the time being and am able to function. If I start going downhill, I'm sure I'll be tested for co-infections. All I can do for now is take things a day at a time.
-------------------- Linda Posts: 749 | From New Hope, PA | Registered: May 2002
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
I can more than relate to taking things one day at a time!
you take care now, trails
Posts: 1950 | From New Mexico | Registered: Sep 2001
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![[sleepy]](graemlins/sleepy.gif)
About 4-6 weeks ago I started feeling really fatigued when we were on vacation. I'd fall asleep around 7:30-8:00 at night and the only reason I'd wake up at 7:00 or so was because my back hurt too much to sleep. ![[Frown]](frown.gif)
![[Big Grin]](biggrin.gif)
![[Smile]](smile.gif)
![[dizzy]](graemlins/dizzy.gif)
because I felt so isolated. At least now I know I'm not alone. ![[Cool]](cool.gif)
![[group hug]](graemlins/grouphug.gif)
![[hi]](graemlins/hi.gif)
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