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Guest Post: Interpreting Lyme Test—Not So Easy by Dr. Elena Frid

2/14/2017

1 Comment

 
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Interpreting Lyme Test - Not So Easy by Dr. Elena Frid
Dr. Elena Frid is a board certified Neurologist, who treats vector borne illness and autoimmunity in New York, New York. If you have Lyme you have probably heard of her, because she is a strong Lyme advocate, spreading information to various publications and online. On her website it says "Through social media, medical publications, and community "call to action" speaking engagements, Dr. Elena Frid has committed her time to bring awareness to medical colleagues, patients and families across the united States." This article was originally published in Dr. Frid's Newsletter and she has given me permission to publish it here: 

Interpreting Lyme Test - Not So Easy

I have been writing to you about my involvement with Lyme disease and other tick borne illnesses for over six months. Through the letters one can see the vast involvement and damage these disorders can cause and can present in many different ways often mimicking other conditions. In my practice, I primarily see patients who have been undiagnosed for months or even years, often not receiving any treatment or not being treated appropriately.

Part of the frustration in the Lyme community is the fact that there is no one good test that is accurate. The test that we have now is up to 50-70% inaccurate in some instances. In turn, if you test negative for Lyme disease on regular blood work--it doesn't mean you don’t have Lyme. In fact, recently the state of Maryland signed a bill into law that requires health care providers warn patients in writing that Lyme disease testing can be problematic and standard laboratory tests often result in false negative and false positive results.

So what do we do? Well, my suggestion is educating yourself which is the reason for this newsletter.

When a Lyme test is ordered through a regular lab, it goes through a two tier approach: ELISA and Western Blot - WB (3 IgM Antibodies and 10 IgG Antibodies) screening test. When the ELISA test comes back positive, only then a Western Blot test will be run, which tests for specific antibodies for Lyme disease. If you tested for ELISA and 2 out of 3 IgM Antibodies came back positive on WB, you are positive for Lyme, or positive for ELISA AND 5 out of 10 IgG Antibodies positive on WB=you have Lyme.

The issue: a patient may falsely test negative for ELISA and so the bands will never be run/reported, or patients may test positive for a number of bands but not enough to meet the CDC/IDSA guidelines delineated above.

Another important point is that not all WB IgM and IgG bands are created equal. If you speak to Lyme Literate Doctors (LLMD) they will tell you that some bands are more or less specific for Lyme disease. Therefore, many LLMDs look at quality of the bands not quantity in conjunction with assessing the clinical picture including physical findings. Bands that are considered to be Lyme specific according to the International Lyme And Associated Diseases Society (ILADS) guidelines: 18, 23, 30, 31, 34, 39, 93.

Please note that some LLMDs also advocate the use of specialty laboratories to test for Lyme and associate diseases which many report is a more accurate way of looking for serologic evidence of exposure to tick borne illnesses.

Take away points:
  • Just because you tested negative for Lyme disease--does not mean you don't have it!
  • See an LLMD (Lyme Literate Doctor) if you have symptoms that are not explained by other physicians and you suspect a vector borne illness.
  • Educate yourself on your illness and ask your physician direct questions about your specific concern.
Thank you Dr. Frid for sharing this important information. Education is the best line of defense. She has asked that if you have a specific topic you would like to hear from her about to please leave a comment and she may write an article to address it. Visit Dr. Frid's website. You can also follow her on Twitter and YouTube.  

"Sometimes courage is the quiet voice at the end of the day saying 'I will try again tomorrow.'" - Mary Anne Radmacher
1 Comment
BETTY GORDON
2/22/2017 01:23:27 am

Elena, thank you for starting to write these informative articles. I'd like to see these subjects covered:

1. As a neurologist, what specific tests do you do to rule out:

parkinson's, ALS MS, Lewy body dementia vs. being Lyme/vector-borne diseases?

Also, do you treat PARASITES since you are aware Lyme/co-infection patients have these too which must be addressed in order to get better from our illnesses?

example, my late husband, Jack Gordon's brain autopsy made WORLDWIDE HISTORY showing 2 diseases never found together before:

BB/LYME and LEWY body dementia causing visual/VIOLENT hallucinations like actor/comedian Robin Williams had.

They also found a filarial nematode partasitic worm in his brain. Cutting it in half, worm had lyme inside of it!! Another 1st!!

His case will be written up in an unknown SCIENTIFIC medical journal to be published somewhere in future with ME as 1st CO-AUTHOR over 3 medical folks involved:

Dr. Alan MacDonld, Paula Pierce who did the work in her lab in Norman, Oklahoma, and Tom Grier who was to write this up.

Thanks Elena; I love your peppy attitude.

We do have 1 suggestion for you on a live taping: wear solid color vs. something with multiple colors like the 1 you did in last 4-6 months.

Those colors were hard for folks who have eye problems and tend to get dizzy. It's easier to listen to you with a calmer environment due to our extreme high sensitivities of:

sound/noises are amplifieid:
all glare, reflections, and lights are like looking directly at the sun for me;
chemical smells .. we're allergic to so many things including:

cigarette/cigar smoke; especially their clothings reeks of it; perfumes, aftershave, hairspray, cleaning supplies, office supplies that smell, DIESEL fumes, spray can paint, etc., some foods, and the list goes on and on.

Thank you for being open-minded to hear my/OTHERS suggestions they posted on facebook feedback.

We look forward to hearing/reading much more. Thank YOU for chosing to treat our BB/vector-borne community of over 1 million folks. Hugs/prayers always,

Betty Gordon aka bettyg on boards

Iowa lyme patient of 48 yrs.
35 yrs. MISDIAGNOSED by 40-50 drs. UNACCEPTABLE ....

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