My wife was camping last summer and received something that looked like a bite on her forehead. The site became painful so she went to the Dr. Also her ears starting itching. They said its an infection and gave her macrobid (allergic to most others). Im not sure how long after this she started have extreme pain on the right side of her face (the side of the bite). They sent her to a neurologist that sent her away not knowing what it was. It wasnt too long and she broke out in a rash over her entire body. Biopsy didnt detect anything. Anyway we have been to a bunch of specialists and nothing has came up except... a positive antibody test to lyme but negative western blot tests. These tests were done almost 5 months after the bite. Also her white blood cells are elevated. I might add lupus was negative along with several other autoimune tests.
So whats next? We just do not know what it is.
JoeMcc
Posts: 4 | From WA | Registered: Dec 2009
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Welcome Joe!
So sorry to hear about your wife's nasty experience. Bless your hearts, that is so frustrating and you should at least have a diagnoses by now.
The positive antibody test to Lyme and the history all indicate to me (I am not a doctor) that she has been exposed to Lyme.
It is very possible Bartonella might also be involved here too.. but that is total speculation at this point.
May I suggest?
Go to the Seeking a Doctor board here and ask for a good doctor in your area to help you get diagnosed and hopefully started in treatment so no more time is wasted and your wife will feel better.
posted
Was she checked for ehrlichiosis?? It can cause the high WBC. It is a coinfection of Lyme.
Do you know what antibody test was positive? If it's the ELISA, you can take that to the bank.
Also, if the Western Blots were negative, WERE THERE ANY POSITIVE BANDS? Get a copy of all tests. If you can bring the results here, we'll help you interpret.
Many GP's or PCP's don't know how to read a WB test. They may not know about Lyme specific bands. If she had a positive band which contains the DNA of the borrelia bacteria, then she has Lyme.
Get back to us, OK!?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
They are right. It is always a good idea to get copies of all tests performed and pics of any rashes.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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posted
BTW... They put my wife on prednisone and she is tapering off now. THe neurologist said we need to repeat the WBC after she done taking predisone as the med can elevate the count. I will see if i can get more details from the lab on the lyme test too.
Posts: 4 | From WA | Registered: Dec 2009
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posted
If she indeed has Lyme Disease, steroids can cause the bacteria to get out of control. They suppress the immune system. Steroids are a big no no with Lyme Disease unless it is life or death or to help adrenals.
-------------------- The advice I give, should not be considered medical advice. My opinion comes from years of research and experience. Posts: 233 | From Somewhere | Registered: Sep 2009
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Many times a tick will give you a lot more than one organism for infection. But many time Lyme
will cause the immune system to not recognize them. Just a few. Rocky Mt. Spotted Fever,
Bartonella, Babesiosis, Ehrlichia. LLMD's treat the whole
patient, not just the lab work. Sorry she has not been treated adequately so far but you can post in
Seeking a LLMD in xxxx section to give you the best chance at a total cure.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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posted
The prednisone VERY LIKELY skewed the test results of the Lyme tests!!!!!!
When she gets off of them.. wait a few weeks, then get her tested thru Igenex. The steroids could STILL affect the results, but you may find more Lyme bands that most labs don't even test for because they are tied to the failed Lymerix vaccine.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
Joemcc,
You have been given some very good advice.
I would also suggest that you place a post in "seeking a doctor" and have her evaluated by an LLMD.
It seems as thou you are not getting any answers so far and she could very well have Lyme Disease and Co-infections.
You can follow these easy posting guidelines to place your post:
Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
If you do get copies and find you
did in fact have significant bands and were told
neg. lets talk, and know you are not alone.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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posted
Well... They are repeating the western blot. They are adding West Nile to the mix too. Also she is being scheduled for a lumbar puncture to look for lyme in the spinal fluid as well as white blood cells and a large aray of viruses. They also want to schedule a contrast MRI to see if its shingles that have not surfaced. I will note they don't think it was lyme because the nerves started reacting within 3 days of what may have been a bite. He said it would take up to a month.
They also think her body is in "flux" of deciding if its going to start some kind of auto imune response. The Dr is wondering if something like reumatoid will surface in the next 6 months.
If nothing comes up... we will definitely be looking for an LLMD.
JoeMcc
Posts: 4 | From WA | Registered: Dec 2009
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posted
BTW if we go out on our own and get some labs done at a place like Igenex...what tests do we need?
JoeMcc
Posts: 4 | From WA | Registered: Dec 2009
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Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
A spinal tap is invasive and not necessary. Lyme disease is a clinical diagnosis based on a patient's symptoms and history. A positive test is used to confirm a diagnosis but a negative
test does not mean that a person does not have Lyme disease or co-infections, thus the need to be accessed by a Lyme literate medical doctor (LLMD).
Why have you not yet placed a post in "seeking a doctor" as I posted above?
Lyme is often misdiagnosed for shingles, RA and a host of other illness and you are getting incorrect information.
Symptoms, even neurological ones such as nerve issues, can surface within a few days. Auto immune syndrome is another classic dx.given when they can't find the cause.
[ 12-09-2009, 11:19 AM: Message edited by: Abxnomore ]
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