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patsie
Regular Member


Date Joined Dec 2008
Total Posts : 478
   Posted 4/21/2009 12:40 PM (GMT -6)   
Hi, I am from the fibromyalgia board and recently became suspicious that I may have Lyme disease. I present with the typical joint and muscle pain I read Lyme patients have. I do not have any mental symptoms.

I went to an infectious disease doctor and came back with one post. band IgG41 and everything else negative. My doctor said categorically it is not Lyme. Today I read on our forum someone who had 2 positive bands and is questioning this. The doctors here, Florida, are very unresponsive to Lyme as the deer tick is absent here.

Should I worry folks or does this seem right to you? My joint pain has been present for just over a year.

I have a home In NH, tick country, but never remember a bite.

If you feel I need further testing do you know any good specialists in the Boston area.

Thank you so much,

Patsie

ticker
Veteran Member


Date Joined Feb 2003
Total Posts : 9208
   Posted 4/22/2009 5:39 AM (GMT -6)   

Hi patsie, welcome to the Lyme board!

Which lab did your Western Blot test?  Quest and LabCorp do not list all Lyme-specific bands on the Western Blot.  No test is completely reliable, and results can vary by lab.  Many people who have Lyme do not have a CDC positive test.  The CDC requires several bands to be present for the test to be positive.  Lyme doctors usually look at which bands are positive, some are specific for Lyme.  Infectious disease doctors are not usually the best to see for Lyme disease unless they specialize in it.

Many people are bitten by ticks without knowing it.  They are tiny, they inject a numbing agent so you cannot feel them on you, and they often go in hard-to-see places.

Some people who have Lyme were first diagnosed with other diseases including CFS, Fibromyalgia, MS, and ALS.  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

When Lyme disease is possible, it is very important to see a knowledgeable doctor.  Many doctors do not understand Lyme and treat with outdated protocols.  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.  You can call this lab at 800-832-3200 and order a test kit.  You take it to a doctor who is willing to draw the blood and send it back.  The results will be reported to the doctor who sent the blood in.  Band 41 is often the first band to show.

If you need a doctor recommendation, you can email me at ko_@bellsouth.net  To confirm or rule out Lyme disease, I believe the most important thing you can do is see a knowledgeable doctor.

It is also important to learn as much as possible.  I recommend reading Dr. Joseph Burrascano's 2008 Diagnostic Hints and Treatment Guidelines For Lyme and Other Tick Borne Illnesses at http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf  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 Second Edition" by Karen Vanderhoof-Forschner. 

I hope you can get answers soon.


patsie
Regular Member


Date Joined Dec 2008
Total Posts : 478
   Posted 4/22/2009 5:54 AM (GMT -6)   
Dear Ticker,

I thank you so much for taking the time to write me this valuable info.

Patsie

patsie
Regular Member


Date Joined Dec 2008
Total Posts : 478
   Posted 4/22/2009 5:55 AM (GMT -6)   
P.S. it was Lab corp!!!

patsie
Regular Member


Date Joined Dec 2008
Total Posts : 478
   Posted 4/22/2009 6:04 AM (GMT -6)   
Ticker bugging you again. Tried to write you but bounced back as illegal address. Patsie

KO-LD
Veteran Member


Date Joined Aug 2007
Total Posts : 887
   Posted 4/22/2009 10:20 AM (GMT -6)   
Hi Patsie,
Have you had your Vit D level checked?  Mine was low and I am supplementing now and have noticed a reduction in my joint pain.  You can do a search on Vit D and get the correct name of the test to order.
KO
2001 symptoms started:
Tingling in fingers and toes both sides, not tested at that time for LD
2007 Summer tested pos. WB, diagnosed with LD, tested neg for co-infections thru Igenex
Abx - Doxy 100mg 2x/day for 3 weeks (before diagnosis)
Amoxicillin 1gm 2x/day for 1 month
Amoxicillin 1gm 3x/day with Probenecid 500mg 2x/day  5 months 
Currently on Dr. Zhang's protocol 


ticker
Veteran Member


Date Joined Feb 2003
Total Posts : 9208
   Posted 4/22/2009 11:57 AM (GMT -6)   
Hi Patsie.  My email address is ko_@bellsouth.net  (there is an underscore after the ko not a dash).  I have found it is better to type in the address than to click on it from the post.  Try that.  Please let me know if it does not work.
 

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