Lymes Testing

Hello.

I was told by my neurologist that two possibilities of my dx is MS and Lyme disease.  I was informed of something very important to my case and possibly others.

I have been getting my blood work done at Quest, who has been notorious for false negatives.  I was informed that I should go to one of the local hospitals and get my blood drawn there, because they are better able to detect Lymes.  I just thought that was an interesting bit of information.  I know it has given me hope that maybe I will finally get a diagnosis.

[karzme]

what all symptoms are you having? Sorry if you've said before. I haven't been on this site for a few days. I have a friend at work who has lyme disease. She told me her eyes get blood in them. Are you having that problem?

[karzme]

what all symptoms are you having? Sorry if you've said before. I haven't been on this site for a few days. I have a friend at work who has lyme disease. She told me her eyes get blood in them. Are you having that problem?

[tory2457]

I have Lyme disease and MS...it's nice to hear your neurologist is looking at Lyme disease; so many don't.
You're correct most conventional labs can't detect lyme,,,they are not sensitive nor do they test for all the bands.

Getting a blood test through a hospital will render you the same result. More than likely a false negative.
To have a fair lyme test you must insist on getting a blood test through a lab that specializes in Tick Borne illnesses!

Go to lymenet.org and ask where to get tested...
ilads.org is a great website filled with lots of information regarding lyme disease and the co-infections that go with it!

An easier way to really find out if you have lyme is to find a lyme literate doctor....Lyme disease is a clinical diagnosis, just like MS. lymenet offers a place to "Seeking a Doctor".

As for blood in the eyes? this is not a common symptom: but here's a list of lyme symptoms that are!

Musculoskeletal System
Joint pain or swelling
Stiffness of joints, back, neck
Muscle pain or cramps
Creaking, cracking joints
Heel pain
Spinal sensitivity
Movement of pain or swelling to different joints
Neurologic System
Headache – persistent/severe
Bell’s Palsy (facial paralysis)
Burning or stabbing pains
Tremors or unexplained shaking
Numbness in body and/or extremities, tingling, pinpricks
Weakness or partial paralysis
Pressure in the head
Lightheadedness, wooziness
Poor balance, dizziness, difficulty walking
Increased motion sickness
Seizures, stroke symptoms
Restless legs
Mental Capability
Memory loss (short or long term)
Confusion, difficulty in thinking
Forgetting how to perform simple tasks
Speech difficulty (slurred or slow)
Stammering, stuttering speech
Going to the wrong place
Psychological well-being
Mood swings, irritability
Unusual depression
Panic-anxiety attacks
Overemotional reactions, crying easily
Aggression, rage
Too much sleep, insomnia
Difficulty falling or staying asleep
Obsessive-compulsive behavior
Suicidal thoughts
Paranoia
Disorientation (getting or feeling lost)
Head, Face, Neck
Stiff or painful neck
Headache, mild or severe
Twitching of facial or other muscles
Jaw pain or stiffness
Sore throat
Unexplained hair loss
Scalp rash
Eyes, Vision
Floaters
Double or blurry vision
Pain in eyes, or swelling around eyes
Light sensitivity
Flashing lights
Tearing and/or dry
Vision loss/Blindness
Ears/Hearing
Decreased hearing in one or both ears
Buzzing or ringing in ears (tinnitus)
Pain in ears
Sound sensitivity
Digestive and Excretory System
Diarrhea
Constipation
Irritable bladder (trouble starting, stopping)
Frequent urination
Upset stomach, vomiting
Bloating
Gastroesophageal reflux

[oncetri]

I have a lot of those symptoms.  Actually tested positive for one band of Lyme.  My neurologist is also considering MS as another possible diagnosis.  I am only missing a few of those symptoms, mainly the cognitive functioning symptoms.  I alo am unsure of the vision issues, because I have had poor vision and many of those symptoms since I was very little.  I also do not have Bell's Palsy and most of my pain is not in my joints, but rather in the muscles.  I only have mild joint pain in my legs and hips, but I ran for 15 years, that is not uncommon for me so I don't know about that.

Thank you for the information.  I will check out that website.  I was directed to a specific hospital in the area, and I live in Tick Country, so hopefully this one will be on the list, since it is so convenient to where I work.

[tory2457]

Hopefully, you will talk with a Doctor who understands this horrible disease. Mostly because having one band positive is significant! Until treatment do more bands show up positive....what band was positive, btw?

Best of luck!
tory

[oncetri]

I don't know which band.  The neurologist is sending me back for another test, because the one showed up and it has been about a month and a half since the test.  He wants it repeated to see if the results will come back with more positives.  He also said that the brain MRI would help determine some answers.  That is tomorrow afternoon.

Is it possible for them determine length of time with Lyme?  Because now that I think of it, he did say something that he thought it was old, but not the main cause.  He suspects MS more than Lyme for my problems, but wants to retest for Lyme because it cannot be ruled out at this stage and would require further testing to indicate it is not a possibility.

His collegue is supposed to be a Lyme expert.  And it appears that they do communicate in the practice.

[tory2457]

hmm, ok I will go along with this lyme expert if in fact he sends your blood test to a lab that specializes in Tick Borne Illnesses! A Lyme specialist would look at the ONE band, talk to you about your symptoms and more than likely suggest an emperical treatment of antibiotics,,,,why? testing all testing for lyme and the co-infections aren't 100%. Our bodies tell us IF there's a bacteria! Also, MRI's to rule in MS? Never heard of that either,,,many neuros state that MRI's are definitive. MS and Lyme are both clinically diagnosed.

I still suggest finding a lyme doctor, allow yourself a chance of ruling out lyme disease. Not the main cause? hmm, lyme could very well be the main cause. Symptoms of lyme come and go. and if left untreated mimic all kinds of diseases,,,MS being one of them. How long do we have lyme? I have it at least 20 yrs! and it was undetected and untreated.

A lyme doctor who looks at your test result with one band positive: would seriously look at that as a beginning point! Testing for lyme isn't the end all in diagnosis. Symptoms are first and foremost.

Wishing you success, and hoping you become your own advocate
tory
  

[oncetri]

The MRI is not the only test I've had.  I have had two EMGs/NCVs, and several other MRIs/x-rays/catscans, and have had numerous sensory and muscle problems in the past 8 months.  He ordered this first, to see if he saw anything, and then there will be two more tests that he will be ordering on the next visit.  The MS was brought into question by my gynocologist practice originally.  He did some quick tests in his office, then said it is a strong possibility, ordered more bloodwork and MRIs (cervical spine and brain).  The results from the bloodwork indicated the Lyme band.

I've been going to this doctor for nearly 4 months now.  He seems to be ordering tests in a fashion that seems to make sense, but agreed.  I need specialists, not just specialty labs.  Problem is insurance and cost.  I'm a single mom, and my son's father isn't really much of a help, especially financially.  He's more like an additional burden, that won't go away.  I'm going to Penn Hospital in August, where specialists are, in one area and can talk to them without much travel, and have the doctors work together, or at least that is the hope.  I would just like some information to give them, and maybe an answer before then.  You know how that goes.

Thank you so much for the help.  What do you think of the new Lyme center, I was going to try to get an appointment there too?

[tory2457]

Lyme center? I don't know which center.
It's important you find a doctor who is a member of ILADS. ilads.org is a group of doctors that treat lyme... This will ensure you will get the right doctor. Having one lyme band positive is a telling sign. Check into ins, testing might very well be covered...IgeneX.com is helpful and this is a lab that specializes in testing.

Go to lymenet.org there's a section: Seeking a Doctor. Then under Medical Questions there are links called Newbie links loaded with information.

If I were you, I would find the best place, the best doctor to help find your answers!