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Old 09-16-2007, 08:27 PM   #1
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Positive Lyme specific bands? Neg. diagnosis?

I will try to keep my post short and sweet, even though it is a long story! I am a married mother of two (10, 4) and I'm 31 years old. With over a decade of symptoms and visiting many different doctors, I finally received a diagnosis of fibromyalgia. (MS was ruled out through an MRI and by a neurologist) No doctor ever mentionedthe possibility of Lyme, but here are some of the symptoms I have have been dealing with over the years:

fatigue
anxiety and panic
depression
muscle pain (tender points and more)
cracking, popping joints
sore hips
painful foot bones
poor coordination
raynaud's (soles of feet)
irritable bladder/interstitial cystitis
reflux
dry/bloodshot eyes
motion sickness
heart palpitations, skipping beats
sensitivity to light, odors
irritable bowels
many visual problems - episodes of nystagmus, blurred vision, drooping eyelids
excessively mixing up letters while writing
poor concentration and memory
some weakness in arms and legs
swollen neck nodes all the time
headaches
episode of facial numbness

I am sure I left things out. Most of these, if not all, can be attributed to fibromyalgia. Recently, I realized though, that these symptoms followed a penny sized sore on the inside of my foot below my ankle over a decade ago. It wasn't a typical bullseye rash, but at the time I was very afraid of what it was. It took quite awhile to go away, but soon afterwards I became ill with flu-like symptoms and was taken to the hospital and was told I had a "virus."

I finally recently had a Western Blot and was told I tested negative for Lyme, but was found to have a low white blood count. I was not feeling well at all when I had my blood taken, so I am pretty sure my counts would be related to fighting a virus and hopefully not something too serious.

On my Lyme test, I tested positive on igg/igc bands 18, 23, and 66. On the igm I tested positive on band 39.

- do you think it is likely I am positive?
- could lead to a low white blood count?
- could still have lyme and had two healthy pregnancies AND a normal MRI?
- could the rash/sore I recall be related to lyme?
- What should my next step be since I did not meet CDC criteria? Should I test at Igenex or just "demand" my primary doc to treat me?

THANK YOU!
JP

Last edited by JP76; 09-17-2007 at 05:54 PM.

 
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Old 09-16-2007, 08:59 PM   #2
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roro HB User
Re: Positive Lyme specific bands? Neg. diagnosis?

I am sorry you are having so many symptoms and not feeling well. it sure does sound like lyme, but only an LLMD can tell you for sure.

good luck "demanding" a non LLMD to treat you. I have gone to 50+ different doctors and specialists over about 12 years and just wasted a lot of money, time and energy. fibromyalgia is a set of symptoms and is usually caused by lyme, but could be something else. but its not a definitive diagnosis.

find a good LLMD and have your children tested too if you think you may have gotten this before you were pregnant with them.

 
Old 09-17-2007, 07:52 AM   #3
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Re: Positive Lyme specific bands? Neg. diagnosis?

JP, you definately need to find and LLMD, your symptoms and history sound very much like Lyme. Only LLMD's know how to properly interpret Lyme tests, and even if you have your primary test you through IGenex he probably won't know how to interpret it. You can have CDC?IGenex neg. results and still have Lyme. My son and I do. and then even sometimes Primaries are so Lyme illiterate or don't want to deal with Lyme that they say you don't have Lyme even when you are CDC/IGeneX pos. (this is what happened to my husband) Ask the baord for a recommendation for an LLMD in your area. and definately have your children tested too. The could be infected and not show signs for years. good Luck, Sarah

 
Old 09-17-2007, 05:49 PM   #4
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Re: Positive Lyme specific bands? Neg. diagnosis?

Thank you ALL so much for your info and help! I really appreciate it... I am eager to start treatment if I have lyme, but afraid to get treatment if for some reason I am not positive. Wouldn't want to get sicker! Thanks again

 
Old 09-17-2007, 07:43 PM   #5
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Re: Positive Lyme specific bands? Neg. diagnosis?

Hi JP76, welcome to the board!

I am sorry you have been sick for so long. Below is a Lyme 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 kowledgeable doctor. Many doctors do not understand Lyme and treat with outdated protocols. No test is completely reliable, and results can vary by lab. Which lab did your Western Blot?

Besides Lyme, ticks can also transmit several co-infections including Babesiosis, two types of Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma. It is estimated that 60% of 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. The Ehrlichiosis infections infect the white blood cells. Some people who have Ehrlichiosis have low white blood counts.

Lyme disease can be passed through pregnancy and breastfeeding. If you think you had this when pregnant, your children should also be evaluated by a knowledgeable doctor.

If you need a doctor recommendation, let us know.

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 (on-line). He is one of the top Lyme doctors in the country, and many Lyme doctors follow his protocols. I also recommend the book "Everything You Need To Know about Lyme Disease
(2nd edition)" by Karen Vanderhoof-Forschner.

I am going to post the Western Blot breakdown in a separate answer.

 
Old 09-17-2007, 07:46 PM   #6
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Re: Positive Lyme specific bands? Neg. diagnosis?

Hi JP. No Lyme test is completely reliable.

Which lab did your Western Blot?

Below is the breakdown of the Western Blot bands:

9 cross-reactive for Borrellia
12 specific for Bb
18 unknown
20 cross-reactive for Borrellia
21 unknown
22 specific for Bb, probably really the 23/25 band
23-25 outer surface protein C (OspC), specific for Bb
28 unknown
30 unknown; probably an outer surface protein; common in European and
one California strain
31 outer surface protein A (OspA), specific for Bb
34 outer surface protein B (OspB); specific for Bb
35 specific for Bb
37 specific for Bb
38 cross-reactive for Bb
39 is a major protein of Bb flagellin; specific for Bb
41 flagellin protein of all spirochetes; this is usually the first to appear after a Bb infection and is specific for all Borrellia
45 cross-reactive for all Borellia (sometimes people with Lyme who have
this band positive also have the co-infection Ehrlichiosis)
50 cross-reactive for all Borrellia
55 cross-reactive for all Borrellia
57 cross-reactive for all Borrellia
58 unknown but may be a heat-shock Bb protein
60 cross reactive for all Borrellia
66 cross-reactive for all Borrelia, common in all bacteria
83 specific antigen for the Lyme bacterium, probably a cytoplasmic membrane
93 unknown, probably the same protein in band 83, just migrates differently in some patients

The IgM tests for a more recent infection, the IgG a longer standing one.

The CDC requires a large number of bands to show for it to be considered positive yet many people who have Lyme do not have this many bands show. Lyme doctors often focus on which bands show, some are specific for Lyme. It is important to be tested by a Lyme reputable lab such as IgeneX in Palo Alto, CA. They have more sensitive tests and list more bands on the Western Blot. Testing should be used as an aid in diagnosis not solely for diagnosis. A lyme knowledgeable doctor will not rely solely on test results to diagnose tick-borne illnesses.

Bands 23-25 and 39 are Lyme specific bands. I think your results combined with your symptoms are significant. I highly recommend that you see a Lyme doctor.

 
Old 09-18-2007, 04:39 AM   #7
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Re: Positive Lyme specific bands? Neg. diagnosis?

Lab corp here in Maryland did my test.

Thanks so much for your info!

 
Old 09-18-2007, 06:37 AM   #8
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Re: Positive Lyme specific bands? Neg. diagnosis?

Thanks again to all of you!

 
Old 09-18-2007, 10:07 AM   #9
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Re: Positive Lyme specific bands? Neg. diagnosis?

Hi JP76. There are some good Lyme doctors in MD. If you need recommendations, let us know.

 
Old 09-19-2007, 12:13 PM   #10
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Re: Positive Lyme specific bands? Neg. diagnosis?

Which lab did your Western Blot?



Lab Corp here in MD. They are doing one more and then sending one to Igenex as well.

Thanks!!

 
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