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Confused about test results and feel there is no hope

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Lyme Disease
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Posted 3/29/2009 4:39 PM (GMT -7)
On February 17th I was told that I do not have Lymes Disease by my medical doctor.

I have been suffering for 10 year with horrible headaches, neckaches, joint paint and tons of symptoms I think are  related to Lymes.  My eyes are the newest thing to both me.

I received my reports and they show positive for the Lyme IgG/IgM Scrn and positive for the Lyme IgG/IgM Interp.  However, I had the Western Blot test done at the same time and it came back neg.  The only band reactive was 41.

I am have been in contact with a holistic Lyme Specialist who did a hair sample to detect metals in my system. No results yet. 

I truly am suffering and I need to know if I have Lyme Disease or not.  All other tests were normal.

I am not sure where to begin.....

Thanks for your help!

Posted 3/29/2009 5:16 PM (GMT -7)

Hi LittleJack, welcome to the board!

I am sorry you have been sick for so long and unable to get help.  People on this board can understand how your feel.  Below is a Lyme disease symptom list.  You can have any combination of symptoms. 

Unexplained fevers, sweats, chills, or flushing
Unexplained weight change--loss or gain
Fatigue, tiredness, poor stamina
Unexplained hair loss
Swollen glands
Sore throat
Testicular pain/pelvic pain
Unexplained menstrual irregularity
Unexplained milk production: breast pain
Irritable bladder or bladder dysfunction
Sexual dysfunction or loss of libido
Upset stomach
Change in bowel function-constipation, diarrhea
Chest pain or rib soreness
Shortness of breath, cough
Heart palpitations, pulse skips, heart block
Any history of a heart murmur or valve prolapse?
Joint pain or swelling
Stiffness of the joints, neck, or back
Muscle pain or cramps
Twitching of the face or other muscles
Headache
Neck creeks and cracks, neck stiffness, neck pain
Tingling, numbness, burning or stabbing sensations, shooting pains
Facial paralysis (Bell's Palsy)
Eyes/Vision: double, blurry, increased floaters, light sensitivity
Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity
lncreased motion sickness, vertigo, poor balance
Lightheadedness, wooziness
Tremor
Confusion, difficulty in thinking
Difficulty with concentration, reading
Forgetfulness, poor short term memory
Disorientation: getting lost, going to wrong places
Difficulty with speech or writing

Mood swings, irritability, depression
Disturbed sleep-too much, too little, early awakening
Exaggerated symptoms or worse hangover from alcohol

It is very important to see a knowledgeable doctor.  Many doctors do not understand Lyme and treat with outdated protocols.  No test is completely reliable, and results can vary by lab. Many people who have Lyme do not test positive by CDC standards which require several bands to be present for the test to be positive.  Lyme doctors look at which bands are positive--some are specific for Lyme.  Which lab did your Western Blot?  Regular labs such as Quest do not list all the Lyme specific bands. 

Besides Lyme, ticks can also transmit several co-infections including Babesiosis, two types of Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma.  Many people who have Lyme are co-infected.  It may affect treatment choice and progress.  It is important to be tested for these by a Lyme reputable lab such as IgeneX in Palo Alto, CA.  Have you been tested for these?

If you need a doctor recommendation, you can email me at ko_@bellsouth.net  

It is also important to learn as much as possible.  I recommend reading Dr. Joseph Burrascano's 2005 Diagnostic Hints and Treatment Guidelines For Lyme and Other Tick Borne Illnesses at http://www.ilads.org/burrascano_0905.html  He is one of the top Lyme doctors in the country, and many Lyme doctors follow his protocols. I also recommend the books "Everything You Need To Know about Lyme Disease Second Edition" by Karen Vanderhoof-Forschner and "The Lyme Disease Solution" by Kenneth B. Singleton MD.

Hang in there okay?  Good help is available, and you are not alone.

Posted 3/30/2009 12:31 PM (GMT -7)
Thank you for your help! My Western Blot was performed at the Quest Laboratoty. Is possible to still have Lyme's Disease even though my Western Block came back negative?
Posted 3/30/2009 12:57 PM (GMT -7)
The short answer to your question is yes. blood test for Lyme are very unreliable. I would suggest you have your blood tested through IgeneX labs. As Ticker has already stated, it is very important to see a LLMD. Good luck, hope you find help soon!!

Posted 3/30/2009 2:29 PM (GMT -7)
Thanks. I e-mailed Ticker for a LLMD in PA and I will await the reply. This is so dumb, but how do I go about getting the tests through Igenex labs. I looked at the website - my doctor needs to request the kits right? I pray I find help soon.
Posted 3/30/2009 6:47 PM (GMT -7)

Hi LIttleJack.  I hope to be checking my email tomorrow.  Are you close to NJ?

You can call IgeneX at 800-832-3200 and ask them to send you a kit for the tests you need.  You take the kit to a doctor who is willing to draw the blood and send it back.  You do have to pay for it up front, but you can submit the bill to your insurance company for what they will reimburse.  I believe the lab will advise you to mail it back closer to the beginning of the week so they get it before a weekend.  IgeneX lists two more Lyme specific bands than Quest does.

I think you are on your way to getting the help you need.

 

Posted 3/31/2009 4:51 AM (GMT -7)
Thanks Ticker - I am about 4 hours away from NJ. I am close to Harrisburg. I heard there was a LLMD in Leola or New Holland, PA but can't find a name!

I will call the lab today. I also want to be tested for co-infections.
Posted 3/31/2009 5:46 AM (GMT -7)
Hi LittleJack,  I emailed you.  Please let me know if you do not receive it.

 

Posted 3/31/2009 6:14 AM (GMT -7)
Thank for the wealth of information. I need to read this afternoon. I just printed out the IgeneX Test form and feel overwhelmed. I am going to call them this AM and get the ball rolling. I was introduced to a homepathic Lyme Specialist a month ago in Dillsburg PA and I like her approach as well. She is testing my hair for metals which she feels the lyme bug craves. Hoping for the results soon. Although I like the natural aspect, I am going to go to a MD as well. Thanks again.
Posted 3/31/2009 8:39 AM (GMT -7)

Hi LittleJack, I am happy to help.  I know things seem overwhelming right now, but it will get better.

There are some Lyme doctors who treat using traditional and alternative protocols together.

Good luck!

Posted 3/31/2009 4:10 PM (GMT -7)

Hi LittleJack,

Welcome!  I am an old timer here and was sick for over 10 years and I am all better so please don't lose hope, lyme is not a life sentence.  I was repeatedly tested by Quest, Labcorp, etc. and all my tests kept coming back negative, I learned that when Quest, Labcorp etc. make their lyme probes they use rabbit antigens from 2 strains of Lyme.

IgeneX uses samples from human lyme patients from all over the United States and Europe and from patients who had early, middle and late stage lyme. Also, when a western blot is done there is an acidic gel that is used to separate out the bands.

Most labs use a 10% gel. IgeneX uses a 12.5% gel so they get better separation of the bands, thus IgeneX is the most accurate lab we have in the U.S.

Anyway, I became better using alternative medicine, not antibiotics and have been in remission for over 3 years now.   I did heavy detoxing, internal cleanses, building up my immune system, dealing with emotional problems, etc.  I still continue to detox and eat healthy as well as exercise. 

I hope this helps and you will get better!   Ask questions, do research, and trust your gut feelings.

Denise

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