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Originally posted by hollyb:

Everything came back negative other than a slightly elevated rheumatoid factor.

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Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006  |  IP: Logged | 

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quote:

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Originally posted by hollyb:

Hi! I posted this under "Seeking Doc" but some of it actually belongs under med ?s.
Thanks goodness I am finding some info out here.

I am 33 years old and mom to 2 beautiful little girls (2 & 3). I need to be able to keep up with them. Please help.

Last year I began loosing hair in September.
Followed by 2 months of terrible joint problems...hips, knees and wrist (Dequervains SYndrome).

Doctors ran blood work (western blot). Everything came back negative other than a slightly elevated rheumatoid factor.

I listened to doctors...did lots of yoga and stretching. Hair loss stopped. I seemed 100% again!

Then...8 months later...it all started w/ a vengence.


Hair loss began late July.
Followed by joint issues that are getting worse and worse.

Then...this past week, the left side of my face has gone numb following some of the worst neck pain.

I thought my lymph nodes were all swollen b/c it hurt behind my ears, neck etc.
(MD gave me heart burn meds???)

I went back to Doc a 2nd time when face continued with waves of pressure and numbness.

This time I got blood work and CT Scan (heart, lungs).

My face and neck hurt almost continually.

My joint pain is settling mostly in my shoulders, neck and hip now.

BUt, I do also have problems with elbows and wrist again.


I should also note that I had a tick in my head 2 years ago, but my husband swore it was a dog tick. He removed it, but I have no idea how long it was there for.

It was about 2 months after giving birth to my 2nd daughter (so 2 years ago). Also, we removed deer ticks from both my husband and oldest daughter after just playing in yard (we have woods behind our house).

I apologize for going on-on. Just trying to be thorough in my search for info.


The results of bloodwork all negative with the exception of a slightly elevated rheumatoid factor (same as last year). The Lyme test they did was done at a local hospital and shows:

Lyme Total Antibody Screen (Lyme Total AB Screen)
Result: .61 Negative
< or =.90 Negative
.91 to 1.09 Equivocal
> or = 1.10 Positive

My question is:

I have been on Doryx (Doxycycline) to clear my skin. Once last year in June-July timeframe for approximately 3-4 weeks (before my first test "Lyme disease, EIA w/ refl IGG, IGM Western BLot" which only showed Negative - Done at Quest DIagnostics).

And, I was on it again for about 2-3 weeks this past May. Could it be impacting my Lyme tests?


I'm at a loss. My doctor's office is no help.

And, they want me to see a rheumatologist. However, I don't feel like dealing with anyone else who just wants to give me anxiety meds.

My pain is real and getting worse.
I am unfocused and can't see to get anything accomplished. So frustrated.

Thanks to this site for posting helpful info. I live in Quakertown, PA. Peace.

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I guess I AM relapsing.

You weren't on ABX when bitten. You took them PRIOR to the testing, but were not tested while ON them.

Am I understanding this correctly?

If I am then I would say that the ABX may not have impacted your test. I've actually had positive tests while on ABX, though I do believe that it CAN impact the test.

Some have actually done an AB challenge where Doxy (in a bactericidal dosagee) would be taken for a few weeks, then I believe they wait a couple of weeks to allow for an AB response, prior to taking the test.


H O W E V E R . . . .
There are quite a few other reasons for false-negative testing AND the tests themselves are not all that accurate.

Basically the testing should be used to back-up a clinical diagnosis, but should NOT be used to rule it out in the face of strong clinical evidence.

The CDC had even published a bold warning that Lyme should be clinically diagnosed & the band requirements of 2/3 IGM & 5/10 IGG are for CDC reporting purposes only. (I think that some Drs might just be too busy to read or, since they read info on Lyme for 1/2 hour in med school, they think they know all about it )

Borrelia burgdorferi can evade the immune system. Co-infections can alter the immune response. Steroids can prevent immune recognition.

There are many instances where people will test negative until treated for a while.

Sometimes when treating one tick-borne infection, co-infection symptoms suddenly start flaring & they then test positive for a co-infection which had previously tested negative.

While treating that infection, symptoms of a different co-infection flare & they may test positive for that one.

Sometimes someone will work up a good enough AB response to test positive for Lyme after they take down a co-infection or two.

Tick-Borne Disease Complexes are very easy to misdiagnose with the information that's been disseminated to both the CDC & mainstream physicians, courtesy of the Infectious Disease Society of America(IDSA).

Their guidelines for Lyme are presently being reviewed as a result of a settlement with the CT Atty General, who found evidence of conflicts of interest for MOST of the authors.

As Veromia said, we're all hopeful that changes will be made to those guidelines so that fewer people will end up with long-term illness as a result of their misinformation.


Pinned at the top of this board, treepatrol has a compilation of information for "newbies". You may find it helpful to read through there when you have a chance.

www.lymeinfo.net has TONS of information & I'm sure BettyG will find you with her newbie information collection.

If I were in your position, I would definitely want to be evaluated by a doctor who's THOROUGHLY familiar with all the intricacies of these diseases and differential diagnoses because the testing CAN NOT be relied on for diagnosis and the average doctor, who isn't dealing with these complicated patients every day, wouldn't have the foggiest idea what was going on.

When they can only spend 5 minutes with a patient, it's near impossible for a PCP to determine what's truly going on. Most just try to figure out who to refer you to in order to make you someone else's problem.

If they don't know you've been bitten, they've been trained to "think horses, not zebras" when they "hear hoof-beats" so the likelihood of them ever putting it all together becomes not so great.

Unfortunately, with tick-borne disease being so common, many PCPs still think of it as a "zebra".

I truly hope things change soon!

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Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner.

Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006  |  IP: Logged |