Did you get retested? If so, what were the results? And out of curiosity, what happened that made you get tested for Lyme in the first place? Were you bitten - did you have the rash? Sorry about all the questions. I just wondered what happened, and if you were all right now. Here's hoping!

Lori

Thanks for asking.

To recap, I was bitten by something twice. I don't know what it was. But there was a clear bite & then a blotchy rash that spread around the bite. No bullseye & it didn't look anything like what I have seen of the Lyme's rashes. A friend of mine had the same kind of bite & rash at the same time. It itched like mad, lasted about 2 weeks. I am sensitive to bites & right now have a little one that is driving me crazy.

I originally got tested because I was having labwork anyway & my doc & I decided to test for the Lyme's at the same time. On that test, the 23 & 41 bands were positive on both the IgG & IgM blots. The Elisa was positive.

Everything I have read about the Elisa including Joseph Burrascano's EXCELLENT long paper in Advanced Topics in Lyme's Disease, says that the Elisa is horribly inaccurate, gives false positives & negatives. Burrascano thinks it should not even be used.

Upon retest, I had the Western blot only & the result of that was positive reaction on the IgG band only. 0 on the IgM bands. Since neither of those bands are specific for Lyme only, the report & my doctors said no reason to treat, especialy considering that I am just recovering from a year with Cdiff.

Much of what I have read also stipulates that treatment should only be begun IF treatment confirms clinical symptoms. I do not have those. I had a slight sore throat at the time of one of the rashes but I also have hay fever at this time of year. I had a slight fever at the time of the second rash but that was back in mid June & I have been fine since. There were clinical symptoms at the time of testing & there aren't now.

If it weren't for the Cdiff, I would probably go ahead & take a course of the Doxy as a precaution, but I do not want to relapse on the Cdiff & given that & the results of the tests, especially the second, I guess I will go with the doctors' recommendations.

Pam

I think that blotchy rashes are more common than bullseyes, to be honest. I've seen a lot more pictures of blotches indicating Lyme than I have the classic bullseye. And mine was more of a doughnut (you couldn't see the bite in the middle - it was one, large ring). Take a look at these: http://www.lyme.org/gallery/rashes.html Most of them are red blotches.

The rash is not a reaction to the tick bite - is a reaction to the Lyme bacteria.

Early tests are often falsely negative. Yours were positive, which makes me wonder even more. But again, the tests are not reliable which is why the rash has to be considered.

You also had symptoms. A sore throat (rash 1) and fever (rash 2) sound like the right kind of reactions to me.

I am very concerned because if I could go back to the time of my bite and act differently, I sure would. Lyme has done irreparable damage to my life.

Please look at this: At the time of the bite, (1) I didn't have the classic bullseye - it was more like a doughnut, (2) I had no symptoms, (3) I tested negative. Because I didn't know what an LLMD was, I dropped it. Six years later, I started getting sick. And for the last five years, it has been a nightmare.

I understand your not wanting to do anything because of the Cdiff. But there are all kinds of things that can be done to help prevent problems:

1. Saccharomyces Boulardii - you can get it at a health food store (refrigerated). It is a yeast that gets rid of cdiff

2. Flagyl would help get rid of it - this is usually combined with other antibiotics anyway

3. Questran, probiotics, etc.

But you probably know all about this since you've been fighting it for a year.

I still think it is worth going on antibiotics. Regular doctors don't know much about Lyme - you have to see an LLMD. It was a very respected local doctor in 1997 who looked at my arm and said that it looked like Lyme, but that it was impossible to get it in Michigan. He was wrong. I didn't know that I had to see a Lyme specialist.

You can find a Lyme literate doctor here: http://www.lymediseaseassociation.org/referral/

You don't want to make the mistake of ignoring it when it might be Lyme. I'm sorry if I am nagging. Please consider this one more time.

Pam, please let me know if I can be of any help to you.

Lori

I called Igenex yesterday & they are sending me a kit. I will have the blood drawn as soon as I get it & will FedX it back. So this should settle it for once & for all. I am willing to pay the $450 so that I don't always have to wonder if I have Lymes or not. It's worth it.

Pam

480-991-4555,

Yes, you just need the Igenex Western Blot IgM and IgG for $190. If you have insurance, Igenex gives you everything the insurance company needs to reimburse you...you just have to submit it yourself. Mine reimbursed me a little more than half of it, so it's worth it to try.

I'm glad that you hadn't totally ruled this out yet. Thanks for letting me know! Please continue to update, if you would.

Lori

My doctor thinks that my positive reaction on those 23 & 41 bands indicate exposure at some point in the past but no active infection. Of course that could also mean that I DID have the infection at some point without any noticeable symptoms & that it subsided, as I guess Lyme's does. So I will be glad to do the Igenex tests & get things resolved.

Pam

I still wouldn't rely on the test. I know that Igenex is the lab of choice, but it still may not give you the correct answer. I know that you just want to be done with this, but it's not something that you want to ignore if you do have it.

When I visited web sites about Lyme disease during the first three years of my illness, I couldn't believe the things I was reading. It was too weird. I figured that I couldn't have it, and dropped the idea. If I had just stuck with it regardless of my test results (which were negative), I could have started treatment back then and would not have developed all of the additional (and really horrible) symptoms that showed up during my fourth year of illness.

I still think that you should see an LLMD. I don't know when you might have gotten your bite (if you got one), but the CD57 test is a good test if it's been more than three months after infection. People with chronic Lyme disease have decreased CD57 lymphocyte levels and there is nothing else known at this time that will do that. Although the test is not meant to be diagnostic, my LLMD thinks it's a much better indicator of Lyme. Of course, you could still have Lyme and not have a low CD57. But it's still a thought.