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what test would you rec. and why

Please doctor...we need to get the truth about what test to ask for .  My symptoms are about four years old now. My husband just found a "bull's eye" today.  We are both in (otherwise good health) we are both into fitness ( which is getting harder for me now because of the fatigue and the joint pain.- not age related)  I am a 43 year old (female) and my husband is 47.  I have had other tests done for MS, FM, cancer, etc.. I have never had a lyme test come back "conclusive".  I think that they are the ELISA tests.  We live in NJ and the disease is very bad here.  Our deer and tcik population is massive, given also very large human population here.  Any- What test do you think we should ask for and do you know of a specialists on the East Coast that you would rec?
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Avatar universal
I had neurological Lyme Disease, late disseminated, sever,e stage four.

I lived in NY by Ithaca in 93-95; I got very ill in 2002 (living in AZ), much later than I was likely to have contracted lyme. It hides, and can evade the immune system for years.  Accurate diagnosis, lyme, and thus appropriate treatment , was not made for 3.5 years.

It was in my central nervous system. My face and neck pain, and overwhelming fatigue were my starters. There is no certain path or course that symptoms take  for the disease, making it hard to diagnosis. I had difficulty sleeping, walking, talking, thinking, extreme depression and sensory sensitivities by one year. Yes, I stuttered and speech became very labored. The dr.s who should know better wrote me off (probably they could not diagnosis, even at a renown tertiary clinic) and told me it was psychiatric problem. My husband believed they were right. Did you know only 1 in 4 marriages survive when one spouse has a chronic illness?

Have done much reading, lyme conferences DVDs, and searching for dr.s who might know diagnosis. My lyme test was negative, so we dismissed that idea, for too long. Many years later have learned the tests are so inaccurate, may stay negative until adequate antibiotic treatment, and for some stay negative forever.
It is a diagnosis that should be made based on clinically symptoms. Yes, all of  my other testing was negative, including lyme tests. My dr. specializes in chronic fatigue, and so attends conferences on such, which now include lyme. Lyme is considered the next great imitator, as syphilis was the first. Because lyme can be so devastating, the earlier the antibiotic treatment starts the better.

Please google lyme sites if you haven't already. I don't remember exact addresses, but lymenet, lyme disease association, international lyme disease and associated diseases society (ilads.org) are good. Some have dr. referral for near your location. My personal opinion learned the hardest way, if cause of symptoms cannot be identified, give antibiotics for a month or more and see what happens. If the person gets to feeling more ill (herkheimer reaction) you are probably on the right track. This is because the bacteria release neurotoxins as they die off, so you will feel worse. The dose may have to be lowered if die off symptoms are too severe. Also, you might have to try a variety of antibiotics.

Bottom line, you may need to go to a specialist (an open minded one at that) to get an appropriate diagnosis. The first person to suspect lyme (at end of first year of being ill, now in AK) was a family nurse practitioner who studied in the East. My Mother even knew best and suspected lyme at this time.  We dismissed it since the tests were negative. You can’t imagine the “ what ifs”  that have gone through my mind.

At 4.5 years I traveled to NYC to Columbia Univ. Lyme Dis. Research Center, which confirmed the diagnosis. I live in Alaska (no ticks here) and another friend from here had similar experience; he finally got accurate diagnosis at John Hopkins Univ.

It is devastating illness if not treated adequately; symptoms can evolve over months. Dr.s may be reluctant to treat with long term antibiotics (which is why you might need to find one open minded). My husband was against antibiotics for more than a month, but he also agreed with dr.s who said it was psychiatric. When he saw how rapidly I regressed when off antibiotics for a week after being on several months he finally realized I did have lyme disease in my brain. Brain SPECT scan  showed global hypoperfusion, which is unlike depression.

I was on oral antibiotics for a year with some improvement, but then 5 months of IV infusion  Rociphen. I have been progressively improving over past 1.5 years since this stopped. I do want you to know I am much improved  :)), but I really suffered needlessly. I was so ill and unable to enjoy life, and gave much thought as to whom I was living for. Not taking my life to end the suffering was a long struggle, that subsided only after I had been on antibiotics for many months. Yes, I was on multiple antidepressants and had counseling. One of the biggest help to me was having my husband go to counseling  at the end of 3 years. This greatly reduced the tension. Talking wsa stressful as it was always about my health, and why didn’t I do this or that to get better. We resorted to hearing each other’s voices in non threatening way was to read to each other (he did most to it).

This is a very grave disease - don't mess around waiting. My son and family now live in Philly, and because of my experience they do not take possible exposure lightly.

Please read websites.

Response from PaintingCate regarding tests is very good. Look for her comment down the right hand column of responders.
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Avatar universal
I am also a sufferer of all the symptoms of Lyme disease my doctors have disregard it since the first test came out negative. its been 4 years I've been suffering they have me on medication that is not doing nothing for me I am still in pain I have seen and switched to many different doctors and they all say you just have to learn to live with the pain.
do you know of a good doctor out here in West Virginia , Maryland, Virginia
i would really appreciate it.
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542445 tn?1215132963
I had Lyme Disease for years and it is SO frustrating how most doctors handle it.  The best test you can start with is a IGG/IGM Western Blot.  The Elisa test is not very accurate, but seems to be the first one they do.  First I would take a picture of your hubby's bull's eye rash, that is golden if you can show that.  If you have a rash, for the most part it's an instant diagnosis and doctors are more inclined to believe you. I know I believe you, but you start to feel like no one believes you, or at least that was my experience.  But with you were it's been 4 yrs (that was like me, chronic for almost 20 yrs), you won't show up positive with an Elisa.  The other problem is what lab you use, you have to use a lab that tests all the bands on the Western Blot, there are very important bands that a lot of labs don't test and disregard.  A wonderful lab is igenex.com, they will do the full test and work up, they specialize in testing for tick born illnesses.  

Do a lot of research because there's SO much controversy, you have to find a doc that you have a good report with, trusts you, wants to help you and will even do research to help and understand your situation (and the disease if they aren't familiar with it).  There is a doc by the name of Joseph J. Burrascano Jr MD who is a specialist on Lyme in your area.  I am in Utah and to have a doc believe that I had it was hard; I did research and his name was pulled up quite a bit.  On igenex's site they have tabs on the left of the screen, click news and articles, and then click articles and you can read a lot about the disease.  It will give you information which will give you more power when you go to a visit with a doctor.  I was on oral antibiotics for 3 yrs and a PICC line with IV antibiotics for 3.5 months; it was tough but I feel SO much better.  Here's some info from igenex's site (igenex.com)...


"A characteristic red bulls-eye rash (EM) at the site of the bite is present in less than 40% of patients.  The rash may appear within days to weeks after the bite, but could be hidden in hairline or underarms.

EM RASH - Rashes from other bacteria in the tick may show up immediately. Typically the rash from Lyme bacteria appears days or weeks after the bite.

Some patients report flu-like symptoms, fever, aches, fatigue, neck stiffness, jaw discomfort, muscle pain and stiffness, swollen glands, and red eyes.  Symptoms may appear, disappear and reappear at various times.

Nervous system abnormalities include memory loss and partial facial paralysis (Bell’s palsy). Migratory joint pains, and pains in the tendons, muscles and bones may occur later  in the disease.  Arthritic symptoms, if present, usually affect the large joints like the knees."

"Lyme disease is a clinical diagnosis. This means that the physician makes the diagnosis using your clinical history and symptoms.  If a physician observes an EM rash, a diagnosis of Lyme disease will be made.  If a rash is not seen by a physician, laboratory tests are often needed to help with the diagnosis."

Tests Available:

A variety of tests are available.  Many doctors who are unfamiliar with Lyme disease just use the Lyme test available in their local laboratory.  This is usually the Lyme ELISA.  This tests measure a patient’s antibody, IgM and/or IgG, in response to exposure to the Lyme bacteria.  By today’s standards, these tests are not very sensitive.  IGeneX, Inc. will only perform the ELISA test in conjuction with Western Blots.
      
The Lyme IFA (performed as part of a Lyme Panel)  detects IgG, IgM and IgA antibodies against B. burgdorferi.   IgM-specific titers usually persist in the presence of disease.  Antibody levels tend to rise above background levels about 2-3 weeks after infection and may remain elevated in case of prolonged disease.
      
The WESTERN BLOT tests  (IgG and/or IgM) can visualize the exact antibodies you are making to the Lyme bacteria.  In some cases the laboratory may be able to say that your “picture of Lyme antibodies” is consistent with early disease or with persistent/recurrent disease.  Not all patients have antibodies at all times when  tested.  Antibodies are more commonly detected within the first year after infection, although reinfection may cause a significant rebirth of antibodies.   At most, only 70% of patients have antibodies early, and the presence of antibodies alone does not make a diagnosis of disease.

The  LYME DOT BLOT ASSAY (LDA) looks for the presence of pieces of the Lyme bacteria in urine.  The assay specificity is between 89-90%.  Therefore, we recommend that any patient that is positive by LDA be confirmed by Reverse Western Blot (RWB).

The PCR (Polymerase Chain Reaction) Test, a highly specific and sensitive test detects the presence of the DNA of the Lyme bacteria. The PCR test is often the only marker that is positive in all stages of Lyme disease. The test can be performed on blood, serum, urine, CSF and miscellaneous fluids/tissues.  Unfortunately, Lyme bacteria like to “hide” in the body, therefore, PCR can often be negative. Studies performed on different sample types suggest that performing PCR on multiple sample types improves assay sensitivity.

WHICH TEST IS BEST?

Lyme Disease is very complicated to diagnose because:

    * Lyme bacteria are not always detectable in the whole blood, even in active disease.  The bacteria like to hide.
    * Every patient responds differently to an infection.
    * Antibodies may only be present for a short time.  

For patients with clinical symptoms of Lyme Disease who test negative by the IFA Screen or IgG or IgM Western Blot, the Whole Blood PCR or the LDA/Multiplex PCR Panel on urine may be appropriate.  There are physician developed antibiotic protocols to enhance the sensitivity of the LDA.  In addition, there seems to be increased sensitivity of this test during the start of menses.

Lyme Disease Tests

    * IgG/IgM/IgA Screen (IFA)*
    * IgG/IgM and IgM Antibody ELISA
    * C6 Peptide
    * IgG Western Blot  and IgM Western Blot
    * 30/31 kDA Confirmation Test*
    * Lyme Dot Blot Assay (LDA)*
    * Reverse Western Blot (Confirmation test for LDA)*
    * Multiplex PCR for urine, whole blood, serum, CSF
    * Multiplex PCR for Miscellaneous samples (ex: Skin biopsy, breast milk, semen)

ilads.org is an awesome site with a lot of wonderful information, and lyme.net

Good Luck, it's a hard process I won't lie, but everything is worth it!!
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