LymeNet Flash: HELP! Advice on LLMD and Western Blot

This is topic HELP! Advice on LLMD and Western Blot in forum Medical Questions at LymeNet Flash.

To visit this topic, use this URL:
https://flash.lymenet.org/ubb/ultimatebb.php/topic/1/75830

Posted by Deb133 (Member # 18544) on :

Hi,

MY DAUGHTER HAD 2 NEG ELISA. LABCORP IN NJ DID

WESTERN BLOT. BANDS TESTED WERE: IGG 93, 66, 58,

45, 41, 39, 30, 28, 23, AND 18. ONLY POS BAND 58.

IGM TESTED BANDS 41, 39, 23. ONLY BAND POS 39.

APPT WITH LLMD ON 1/8. CLINICAL SYMPTOMS: SEVERE

FATIGUE, STOMACH, JOINT, MUSCLE PAIN, SENSITIVITY

TO LIGHT/SOUND, JAW PAIN, HEADACHE, NECK ACHE,

SHORTNESS OF BREATH, CHEST PAIN, EARS HURT AND

BUZZ, HEAVY LIMBS, ETC. SYMPTOMS NOT THERE AT THE

SAME TIME BUT ALWAYS FEELING SEVERAL CONSTANTLY

FOR 6 WEEKS. ANY OPINIONS? SHOULD I DO WESTERN

BLOT THRU IGENX NOW OR WAIT TILL LLMD. DOES

ANYONE THINK THIS COULD BE LYME. THANKS TO ALL!!!

Posted by Munch (Member # 11323) on :

See the Revised Western Blot Criteria section:

http://www.hormoneandlongevitycenter.com/lymedisease/

[ 09. January 2009, 12:41 PM: Message edited by: Lou B ]

Posted by TerryK (Member # 8552) on :

Yes, I think it is probable given her exposure to borrelia (based on her test results) and her symptoms but her LLMD will be able to evaluate her properly.

I would wait to have further testing until you see the LLMD if it were me.

Band 39 is specific to borrelia.

Scotland revised reading of the WB to include band 58 as a specific band.
Audit of the laboratory diagnosis of Lyme disease in Scotland

A good evaluation for co-infections would be important. Both clinical and lab testing.

Good luck to your daughter. I hope you get answers and she gets proper treatment.

Terry

Posted by tickbattler (Member # 14873) on :

I would bet $$$ that it is lyme and coinfections. She has typical lyme symptoms and a positive lyme specific band so you know she has been exposed to it.

My three children all have lyme and 2 of the 3 were clinically diagnosed by Dr. J (in CT) before they tested positive. One of mine still has not tested positive but is being treated based on symptoms and is improving.

I would see an LLMD ASAP. I highly recommend Dr. J. It is about a 4 month wait to get in but you could get on the cancellation list.

Best of luck to you. Sorry your daughter is going through this.

tickbattler

Posted by TerryK (Member # 8552) on :

The reason I would wait until you see the LLMD is they may want to do a challenge with abx and test her again after that.

I don't think they all do it but my LLMD did.

Terry

Posted by Deb133 (Member # 18544) on :

Terry,

WHAT'S A CHALLENGE?

DEB

P.S. I AM HOPING HE WILL FEEL HE DOESNT FEEL HE

NEEDS TO DO ANOTHER WESTERN BLOT AT THIS TIME

I KNOW MY INSURANCE WILL NOT COOPERATE. BUT

SERIOUSLY I WILL REMORTGAGE THE HOUSE IF IT GETS

HER THE PROPER TREATMENT

DEB

Posted by Deb133 (Member # 18544) on :

TERRY,

I GOTCHA...WITH THE CHALLENGE. RIGHT NOW SHE IS

ONLY ON AMOXICILLIAN...WHILE WE WAIT FOR THE APPT

BUT THIS DOESNT SEEM TO BE HELPING AT ALL

BUT YES I AGREE WITH THE CHALLENGE ISSUE

DEB

Posted by Deb133 (Member # 18544) on :

Thank you to everyone who responded to my post.

Sorry I used all caps!

I will post again after our appointment with the LLMD on 1/8.

Deb G

Posted by timaca (Member # 6911) on :

You also might get your daughter tested for HHV-6, EBV, enterovirus and chlamydia pneumonia. Then, see what comes up most likely based on test results and treat that.

Best, Timaca