Comments on: I was just diagnosed with Lyme disease, but I heard the blood test can give false-positives—is that true?

By: cat

cat — Thu, 11 Feb 2010 19:50:43 +0000

I was diagnosed with lyme in 2003……had a swollen knee no other symptoms, went to orthapedic and he suggested lyme. Got tested positive for lyme went on 4 weeks of doxy…… felt fine no problems, never had the herx. Get tested every year have 58 41 34 30 29 21 20 18…. recently hae had numbess in face pressureback of head… went to see Nuerologist.. mri negative, going for a SPECT test tomorrow… need lyme literate doctor in Boston, Mass… can anyone help me out? Thanks

By: franny

franny — Mon, 27 Jul 2009 01:41:12 +0000

Joint pain all over, brain fog, sinus symptoms, vertigo, the list goes on and on. Live in Columbia County NY-the Lyme capital of the world at this point. Every year pull ticks off and have had two instances of bulls eye rash. Tests always come back negative from LabCorp. Two months ago my test was run by Quest and the Doc said it was negative again, however my copy indictes band 141 or maybe 41 (don’t have test in front of me) is reactive. I would guess as a lay person that this means I have or have had Lyme. Doc doesn’t agree. Any advice on how I should proceed? Thanks.

By: richard

richard — Wed, 01 Jul 2009 17:46:31 +0000

Hi–

About 6 weeks ago I had general malaise, low-grade fever, swollen and painful hands, migrating myalgia and arthralgia. Went to Primary care, tested sed rate, crp, lyme.
He said that Lyme was neg, but when I went in last week saying I still didn’t feel like myself, I learned that the ELISA was equivocal.
Retested Lyme. It’s now ELISA pos, but still (and I haven’t got the specific bands) “western blot negative.”
However, they’re starting me on doxy as I still have myalgia, numbness and pains in my hands, easily fatigued muscles, and I had a unilateral aura in my left eye two weeks ago.
I used to think that Lyme was overdiagnosed, then I read the article that connected the IDSA with the NEJM article.
http://www.medscape.com/viewarticle/586226

any comments?

By: Heather

Heather — Wed, 24 Jun 2009 01:13:15 +0000

Hello-
Just found this web sight seeking info for myself. Just had band 23 and 41 show for second time and wb positive, been to infectious disease she ran a parvo, that was negative now being sent to a rheumatologist???? Very frustrating to say the least. They had me on doxy for 2 weeks and told me to stop. Dr.’s think it is a false positive. I am very symptomatic and extremely tired all the time. Sounds like from what I have read through this sight alot of the same symptoms but not sure what it is!!!!

By: Ruth Lanham

Ruth Lanham — Thu, 18 Jun 2009 03:28:05 +0000

I have been suffering from lymes since 2004 and was unaware that I had it till 2006. I was diagnosed with Borrelia 41.
How ever, I am being tossed around by the medical profession with out any medical care.
I am tired of spending money on physicians who do nothing.
I need some help. If anyone out there can help me with a physician who is lymes literate, please help me.
Brithadashah2008@yahoo.com

By: Jasmine

Jasmine — Sun, 07 Jun 2009 03:13:16 +0000

Rosanne,
I agree with Heather. I was diagnosed with Lymes in 2005 and have seen 2 LLMDs (after m-a-n-y docs). I have been on the Marshall Protocol for 2 years and have healed tremendously. I’ve been able to avoid 2 neck joint surgeries. I had terrible migraines for 20 years that disappeared on the Marshall Protocol. I highly recommend it for anyone with Lymes & other chronic infections. Well wishes to all.

By: Heather

Heather — Sun, 31 May 2009 18:12:36 +0000

Rosann,
From personal experience, I would bypass the Infectious Disease MD. I was referred to one by my OB/GYN. I am very symptomatic, muscle aches, joint pain, brain fog, fatigue, the list goes on and on. My Lyme titer has been positive Twice. They go on to do the Western Blot (through Quest Lab.) My IGM band 41 KDA remains positive. He informed me to “put Lyme out of my mind.” He believes that it is Fibromyalgia. I refuse to accept this without further investigation. I have found a LLMD near me and am making an appointment tomorrow. Good luck to you.

By: Rosann

Rosann — Sat, 23 May 2009 14:54:23 +0000

Dx with Lymes 8 yrs ago/weak,malaise,pain R elbow,flu like symptoms,also found 5 bulls eyes on my back. Tx: doxycycline 21v days.
Over past 5 yrs, panic attacks (was put on Buspar). Always tired, weak, needing naps,woozy,pressure in head and face bone. MD thought perimenopausal, tx with hormones for three yrs. Off hormones now, the above sympt,come and go.Taking Wellbutrin 300 qd. Had bloodwork done by friend 5/19/09:
Western Blot IGG/ 4 reactive bands,18-23-45-58
IGM/ 1 reative band,23. The LD screen was positive with a range of 1.32. I still feel weak in the knees, just finished having problems with R & L shoulder tx: celebrex 200 bid x 2 wks, shoulders better. Now R knee, celebrex restarted.
Can’t find words, mix words up, trouble forming words, feel disorganized (I’m a nurse) can’t remember info obtained, must write everything down. MRI yr ago , nothing significant some concentrations of white matter, no tumors, etc.
BW neg for Lupus,E. Barr.
Should I make an appointment with an infectious disease MD? Eventhough my BW is “negative”?
When I did the W. Block in ‘07 I had only 2 pos. IGG bands, and this time I had 4. Does that mean anything?
Anybody have any ideas or suggetions?
Thank you for your time.

By: JBH

JBH — Tue, 13 Jan 2009 23:51:09 +0000

Keep seeking!!!

Son was unwell for many years.

Diagnosed with Hashimoto’s thyroiditis and began treatment, but still was unwell

We live in Lyme Country, USA, so sought testing

Had one positive Elisa and one equivocal Elisa.

Only the 41 band on the IgG ever was prsesent over 4 years on many tests thru LabCorp and Quest. But it was present consistently.

Found to have high HHV6 (can’t remember if it was the A or B variant, but the one not associated with HIV)

lso had high EBV titers which increased dramatically over 4 years

Finally treated with anti-virals for CFS by renown NYC infectious disease md

However, then further cognitve decline necessitated neuropsych eval

Neuropsychologist suggested Lyme testing by IGENEX

Stunning, positive results from IGENEX on the IgG Western Blot

Has been seen by renown Boston LD specialist who highly respects the IGENEX IgG Western Blot in Boston

Treatment going very well. Steady improvement, but resurgence of arthritis-like symptoms about every 6 weeks but for shorter durations as treatment continues

Now into 2nd year of treatment

Have since read that HHV6 and E-B titers can be markedly elevated in people with LD

Now, daughter, who was diagnosed with Hashimoto’s thyroiditis about the same time as her older brother, is not feeling so well.

Hives. Chills. Memory problems, etc.

QUEST test for Lyme show both the IgM and IgG WB positive for the 41 band.

Awaiting results any day now from IGENEX!!!!

So, keep seeking!

By: Gretchen

Gretchen — Sun, 07 Dec 2008 23:01:01 +0000

Hello,

I was diagnosed with Lymes by a new primary care Dr. who I went to see as a new patient.

The only reactive bands on my western blots were 41 kd IgG and 41 kd Igm.

She had me tested because:

1) I had a very large insect bite 1.5 years ago that was treated in the ER– it was not the typical bulls-eye, though.
2) 8 months ago I had a strange unexplained sore/cyst on my face that took 2 rounds of IV antibiotics followed by two different kinds of oral antibiotics to resolve.
3) I’ve had a chronic lower back ache for about a year.

I have no other symptoms, and, from what I’m reading, band 41 alone is not particularly determinate of Lyme. I’m not sure I have it but started the 1 mo. course of doxycilin anyway.

Any thoughts?

Thank you!