LymeNet Flash: ACK! I am "Lymed" (again)

This is topic ACK! I am "Lymed" (again) in forum Medical Questions at LymeNet Flash.

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Posted by richtersl (Member # 2554) on :

After 10-plus years of being symptom free I've been knocked on my rear-end by Lyme again.

[sleepy]

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. [Frown]

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!!! [Big Grin]

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.

Posted by minimonkey (Member # 8693) on :

OOOOOH! So sorry to hear of your relapse (or reinfection?) -- YUCK!

But, 10 years symptom free???? That is fantastic! Hope you knock this thing down quickly and get back to feeling well again soon!

Posted by Lymetoo (Member # 743) on :

Hey there! Sorry you're back...but good to see you know where to go for help!!

Hope you can get a handle on this very quickly this time! [Smile]

Posted by richtersl (Member # 2554) on :

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. [Smile]

There was no LymeNet when I had it the first time. At times I felt like I was going nuts [dizzy]

because I felt so isolated. At least now I know I'm not alone. [Big Grin]

It's 1:30 in the afternoon and...no heart palpitations today! [Cool]

Posted by AZURE WISH (Member # 804) on :

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.

Wishing you a speedy recovery.

Posted by tothepoorhouse (Member # 8595) on :

That just sucks. I'm sorry too that you are sick again. [Frown]

We are all in this together.... [group hug]

Posted by Monica (Member # 224) on :

Glad you didn't waste any time taking care of this problem.

You'll be back on your feet in no time.

Here's hoping the next 100 years are symptom free.

Posted by Lioness (Member # 10655) on :

So sorry you are going through this again. But, 10 Years symptom free!!! WOW!

I pray we can all be that lucky!

Hope you feel better fast!!

Posted by trails (Member # 1620) on :

hi there
[hi]

I had almost 10 years of symptom free too! Dnnt know if it was relapse or reinfection in 2001 that brought it all back and then some.

I orginally got Lyme in SE penn (Chester county) so pretty close to you.

MAIN DIFFERENCE between these days and the past is

YOU MUST
TREAT COINFECTIONS~~~!!!!

I was not treated for coinfections in 1991, or 2001. And have relapsed again in 2004.

I have babs, bart, and HGE.
What is your doc doing about coinfections?

Posted by richtersl (Member # 2554) on :

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!

[Big Grin]

Posted by trails (Member # 1620) on :

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.

Posted by richtersl (Member # 2554) on :

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. [Smile]

Posted by trails (Member # 1620) on :

I can more than relate to taking things one day at a time!

you take care now,
trails

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