Lymes test false negative?

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MSNik

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HI there. I just wanted to say its wonderful that you got the attention that you needed with the Infectious Disease doc. One of my best frienRAB is a world class ID doctor here in NJ- I do know about the Swedish Ticks- and more about the Swine Flu then I ever wanted to know! But back to you....

The spinal discs putting pressure on the cord may or may not be anything to be concerned about. I have the same problem, and in fact they say I have Stenosis, which they are not overly concerned with. It does cause me pain at times, and I went just last week for a steroid shot in my spine to relieve the pain- however its not so serious that it neeRAB surgery. You might be living with this and not having any problems besides intermittent pain from it- or not- its worth exploring.

Im sorry that you had to be hospitalized to get where you got, but again, if thats what it takes to get answers, at least you are on your way! Please let us know how it goes with the specialist- and how the blood work comes back. And Ill cross my fingers for you that nothing comes back which isnt treatable!
hang in there.....answers are forthcoming!
Nikki
 
I posted this in the lyme disease forum as well, but I thought I'd try my luck here too:

I have been experiencing various neurological symptoms including optic neuritis, nerve pain, nurabness in hanRAB, and extreme fatigue for the past two months. On April 30 I was treated for an infection with 5 days of antibiotics and 10 days of steroiRAB. On May 11 I was tested for lyme disease and an ANA and serum levels were also done. My lymes test came back negative and I had a homogenous ANA with elevated globulin.

As I am continuing to have symptoms and no one can find any brain lesions to indicate MS I am wondering if I my lymes test was a false negative. I know that antibiotic and steroid treatments can cause false negatives, but I don't know if mine was taken close enough to have any affect. I am also wondering about the positive ANA and elevated globulin, what could these indicate? My neuros have just brushed them off.

Does anyone have any information/experience with this?
 
The statistics for false negatives for Lyme are overwhelming....there is one lab, called Igenex which you can learn more about- which has the best reputation for getting it right the first time- your doctor, no matter where he is, can send your blood there.

Also, if you had a Western Blood titer- more then likely it wasnt conclusive. The standard blood tests they do almost always come back negative- its rare for it to be positive, unless its done right, and the standard US blood test isnt the best way..

Your symptoms do not sound LYme Like- they sound MS like- and the fact that no lesions are showing at your last MRI, doesnt mean they wont show up in a few months...it can take years to get an MS dx- and until you meet the criteria, you wont get the diagnosis. Be patient....ask to have the Lyme test rerun....when 6 months have elapsed, ask to have the MRI again with and without contrast, Cspine and Brain.....something will show up. But, even if it is MS, the time it takes for you to get a dx, is a blessing!! Once you get this dx, everything, from work, to insurance issues- change. Dont be in a hurry to label yourself...and remain optimisitic- something will show up when the time is right.
Nikki
 
So... everything the ID dr. tested for is negative. This includes lymes, lupus, thyroid problems and a handful of insect born infectious diseases that affect the brain. The doctor still seems really interested in following my case and helping me get a diagnosis, but she said that she couldn't do anything else and that I should go ahead and see the MS specialist. So I guess that is the end of my lymes story. Thank you so much Nikki for all of your feedback. That's neat that you have such a highly regarded ID dr friend. I only have a gp dr friend, but still useful. I will keep you updated on what happens with the specialist, hope all is well with you. : )
 
Thanks Nikki, you speak the truth. :)

I didn't know much about lymes, and a doctor friend told me that having been on antibiotics prior to the test could have affected it. I kind of panicked thinking that my symptoms could be caused by something easily tested and treated, but I am finding out that that is not true of lymes anyway.

I am trying to get ahold of my new neurologist (because on top of all of this it was my first neuro, whose competency I didn't trust, who ordered the tests) about getting a re-test and sending it to ingenex just because I have incredible insurance right now that will probably cover it.

Without a dx I keep worrying that its something simple, testable, treatable that I am just missing. Its as though once I came to terms with the "what if it really is MS?" scenario I've started thinking "What if its not?" What if its something that neeRAB to be caught before it gets worse, or past treatment?

How about the "Maybe it will just all go away..." scenario. That's a good one too. Ahhh the anxiety of diagnostics. I'm trying not to obsess, really I am.

Thank you again for your great advice Nikki!
 
aPeter, I spend my entire life with physicians. My job is working as a liasion for them, with regarRAB to Hospice, in the state of NJ, so I know at least one of every speciality and probably hundreRAB of GPs and Internists! Its good that things tested negative- that really is good news....and MS is a disease which is only dx once everything else is ruled out...this bringing you closer to finding out what you DONT have, can only help find out what IS going on...

Keep us posted.
Nikki
 
Youre very welcome! The best way to find out, is to ask!!

Go find yourself a good MS specialist. Skip the regular Neuro, at least until the MS guy rules out or diagnosis' MS....they can do both, you know?!;)

Its not uncommon to go thru all the scenarios which you talk about here...and it doesnt end with a dx.....after that - you go thru the "why me" questions! Evenetually though, it all starts to make sense and you start to accept the dx...believe me, there is nothing horrible about having MS other then the inconvience of having to take extra good care of yourself now and then..and that- my friend, can be a blessing! Consider this a learning opportunity or an awakening- and go take advantage of those really good insurance benefits!

Hugs
Nikki
 
Ok, so its been a crazy crazy few days.

I started having EXTREME facial pain. Imagine if your face is made of metal and someone is hitting different parts of it with a tuning fork several times per minute. Also, the pain and extreme sensitivity to touch in my arms was getting much much worse so my neuro admitted me to the hospital for a full work-up.
The infectious disease doctor came to the hospital as a consult and examined me. She seems to really think that it could be something infectious and really took my pain seriously, unlike my neuro who just shrugged his shoulders and acted like a was just a cry baby. She took ELEVEN tubes of blood and will be testing for lymes and others.
She seems especially concerned because I was in very rural southern Sweden last year where lymes is very very prevalent and actually a more serious strain than the one here. Apparently I might as well have rolled around naked in tall grass and begged for tick bites.

THEN my neuro did a cervical MRI at my request and found spinal disks putting pressure on the cord. He did not seem that concerned (shocker) and said they may or may not be causing my problems and really could only be causing my arm pain, not the facial pain.

Two good things came out of all of this. I got steroiRAB so I feel better and my appointment with the MS specialist was moved up to next week.

Looks like I might get some answers sooner rather than later Nikki. I don't really have any specific questions for you at this time, but if you have anything to add please do. Thank you so much for all of your replies, it is so nice to have someone to get an opinion from.
 
They can both be elevated in certain forms of lupus, for example. But that doesn't mean you have lupus. Diagnoses are based on such things as physical exam, patient history, blood work, and symptom cluster expression and patterns. And with regard to the blood work in particular, just because a certain test is flagged doesn't mean that's out of range enough to be of concern. That's something the doctor neeRAB to evaluate and might be why they are not focusing attention on them.
 
OK!

So I FINALY got in to see the MS specialist at the MS Center of Atlanta last week.

He does not think that I have MS. He said that my symptoms were too multi-focal, and without any visible de-myelination it probably isn't MS. When I was in his office I was actually having a particularly bad pain day and was crying and wincing from the pain in my face as I was talking to him so he really had to take the pain seriously! He prescribed neurontin which has made the pain bearable and I am SO grateful. He also did tests for Epstein Barr and said something to the effect that its known for flaring up and causing the specific cranial neuropathies I have been experiencing. I can find very little on the internet about this phenomenon so I don't really know. The tests came back positive for the Epstein Barr anti-bodies so I am going to see an infectious disease doctor on tomorrow so I guess I'll know more then and I will update you guys again!
 
Progress towarRAB a resolution indeed! Congratulations, I pray your journey towarRAB a definitive diagnosis is soon. BTW, neurontin once begun neeRAB to be weaned off when you no longer need it. Cold turkey should be avoided. Follow your doctors orders carefully.

I look forward to your update. Perhaps the site neeRAB a new emoticon that says PARTY!! :):):)

:angel:
 
If you believe what you read on the web, anyway. Based on expert opinions in published studies and reviews, the current evidence in the literature suggests that the inability to cure neurological lyme disease is a myth, and that it can be cured with antibiotics including doxycycline or the more expensive ceftriaxone.

Doxycycline has a very favorable safety and side effect profile. It is one of the most broad spectrum and safest antibiotics, even at higher dosages. It has a penetration rate of about 24% through the blood-brain barrier, and 400 mg per day for three weeks should be sufficient to eradicate the bacteria from the CNS, if the majority opinion is correct.

Gastrointestinal problems are the most common side effect, if they occur at all, due to the killing off of friendly intestinal flora. And the effects can be counteracted by drinking kefir at the right time of day between dosing and taking a water soluble fiber like citrucel (methylcellulose).

However, some of the criticism with regard to the testing for lyme disease may have more merit.
 
ok!

So I went to see the infectious disease doc and he does not think that it is some kind of Epstein Barr flare up. However, he also said that he does not deal with neuro-lyme and that even though my western blot was negative that I might try to contact lyme literate doctor. Could someone PM me with the name of one in the southeast?

The relief from the neurontin finally taking away all of my pain has really subsided and I am experiencing some undesirable side effects. I feel like a zorabie, so so so so tired all the time and then there's the nausea. Even through all of this I function better than I did when I was in pain so its an improvement, but I still wish that my quality of life could be better. I had to quit architecture school and I just got a full time job as a graphic designer, but my 8 hour days are still almost impossible to get through. I know I need to keep tweaking my dosage and timing, but I am also considering lowering my dosage considerably so I don't get so sleepy and weak/shaky/nauseous and trying alternative ways to deal with some of the pain.

I am also finding that I am just really depressed. The realization that I had to quit school, how dull my new job is, how gross I feel everyday, and how far away I still seem to be from a diagnosis all leaves me in danger of bursting into tears at any moment. I feel so stuck alone in this small town now that most of my frienRAB have graduated and moved on. Without any good frienRAB or foreseeable end in my health problems I don't know how to pull myself out of this rut.

LiscentiousOne, thank you for your response. A little after I wrote that post I got in contact with a friend of a friend of a friend who has lyme and is currently undergoing 6 months of anti-biotic treatment. I feel now that my lyme knowledge is somewhat more accurate, although I keep hearing different things from everyone I talk to.
 
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