Need help with testing options, New and somewhat on my on

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galvestongirl
New Member


Date Joined Aug 2009
Total Posts : 13
   Posted 8/8/2009 3:10 PM (GMT -6)   
Hi, I am new to lyme Disease world and could use some help. First to fill you in on my symptoms - during the past year I had the bullseye rash, flu symptoms, ringing in my ears for several months, vertigo, stiff neck and joint pain especially in my hands. I had not put these together as symptoms of Lyme until going to my chiropractor with a neck so stiff I could not move. She is the one who brought up the possibility of lyme disease. I live in Galveston, Tx so this is not something we are very educated on here since it is somewhat rare. Anyway, a little more info and I will get on to my question. Right now she is the only doc I am seeing , since due to Hurricane Ike last Sept. my regular doc will not be reopening her office until Sept. So I am feeling a little bit deprived of good consultation.
Last week I had a lyme test done through Quest Diagnostics. The only thing that came back reactive was the 23 KD (IGM) band. so of course it said my test was neg. But from research I have done it seems that I would have to been exposed to the bacteria to have this come back reactive. Is this correct? So , now to the major question, I am going to send off tests to IGeneX this week but am confused on what tests should be run next. I am totally confused by all the options. Any advice would be greatly appreciated.

ticker
Veteran Member


Date Joined Feb 2003
Total Posts : 9208
   Posted 8/8/2009 4:26 PM (GMT -6)   

Hi galvestongirl, welcome to the board!

Although only about 50% of people who have Lyme ever get a rash, a bulls-eye rash is a definite sign of Lyme disease.  When did you have the rash?  Did you get photos of it?  If it comes back (sometimes they do) be sure to get photos.  It is important documentation.  Place something near the rash, like a coin or ruler, before photographing to give it size definition.

Lyme disease is in every state.  From what I understand, there is a lot of Lyme in Texas.  Unfortunately, many doctors across the US are unaware of how prevalent it is.

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 knowledgeable doctor.  Many doctors do not understand Lyme and treat with outdated protocols.  No test is completely reliable, and results can vary by lab.  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. 

Labs such as Quest and LabCorp do not list all the Lyme specific bands that IgeneX does.  Although the CDC requires several bands to be positive for the test to be positive, many people who have Lyme do not have this many bands.  Lyme doctors focus on which bands are positive--some are specific for Lyme.  Band 23 is a Lyme specific band.

I recommend getting the Western Blot (IgG and IgM), Babesiosis, Ehrlichiosis (HME & HGE or one may now be called Anaplasmosis), and Bartonella testing done at IgeneX.

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 2008 Diagnostic Hints and Treatment Guidelines For Lyme and Other Tick Borne lllnesses  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.   He discusses antibiotics and doses starting on page 18.   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 M.D.


Post Edited (ticker) : 8/8/2009 4:36:48 PM (GMT-6)


RottenDog
Veteran Member


Date Joined Apr 2009
Total Posts : 1013
   Posted 8/8/2009 11:19 PM (GMT -6)   
galvestongirl

welcome to the board, i'm from south of Amarillo Tx. and my Dr told me we don't have lyme in this part of Tx. therefore he said my positive IgM was a false one. i am right now waiting to hear back from a LLMD in Co. as this is about as close of one i can find. i know of at least 6 cases of lyme in my county alone.

if your able to seek out a LLMD i would strongly suggest it. most PCPs and IDs have no clue what they are doing. i wish you all the best. :)
   RD
 
still looking for answers.
 
Remember that advice is free, its your choice what you do with it.  :)


galvestongirl
New Member


Date Joined Aug 2009
Total Posts : 13
   Posted 8/9/2009 10:39 AM (GMT -6)   
Ticker,
I have been trying to email you for a list of docs but it keeps bouncing back, is there a way to send you a pm with my email?

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 8/9/2009 10:46 AM (GMT -6)   
galvestongirl,

Her email is probably full. You're welcome to post your email here if you'd like.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

Co-Moderator Lyme Disease Forum


ticker
Veteran Member


Date Joined Feb 2003
Total Posts : 9208
   Posted 8/9/2009 11:55 AM (GMT -6)   

galvestongirl, did you click on my address here to send an email?  For some reason, it does not always work. 

Try sending me an email at ko_@bellsouth.net (the _ is an underline not a dash) from your email.  Let me know when you send it so I know if it went through.  I have been getting other emails okay.

 

galvestongirl
New Member


Date Joined Aug 2009
Total Posts : 13
   Posted 8/9/2009 12:12 PM (GMT -6)   
Just sent you email, I think it went through this time. Thanks
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