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Buffster
New Member


Date Joined Oct 2008
Total Posts : 5
   Posted 10/15/2008 2:17 AM (GMT -6)   
 
Hi everyone,
 
I'm very new to this and I haven't had time to go through the posts so I'm sure I'll be asking questions that has gone around the block a few times.
 
Basically we got my brother tested for Lyme with the company igenex and it has come back as a positive (1+, think that means low, on two bands) on the IGM western blot and came back negative on the other tests (IGG, Multiplex PCR).
 
We are in Ireland here no one seems to know anything about Lyme and are negative about diagnoising it. But my brother has travelled extensively and although he doesn't remember a bite his has had symptoms for a long time now (foot drop, fatigue, twitching) and I think it might be chronic Lyme.  
 
Really I'm looking for advice as to what to do next, how acurate is the igm western blot test and is it safe to say that it is Lyme as it has come back positive?
 
Any help would be greatly appreciated,
Thanks x

ticker
Veteran Member


Date Joined Feb 2003
Total Posts : 9208
   Posted 10/15/2008 6:26 AM (GMT -6)   

Hi Buffster, welcome to the board!

If you would like help interpreting the Western Blot, let us know.  You can post your brother's results.

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.  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.  Has your brother been tested for these?

The closest doctors I know of are in the UK.  If you would like the information, you can email me at ko_@bellsouth.net You may be able to get doctor recommendations at EuroLyme Support forum www.groups.yahoo.com/group/EuroLyme/

Be aware of the Jarisch-Herxheimer Reaction (herx).  Often, when people who have Lyme take antibiotics their symptoms get worse or they get new ones.  When the antibiotics kill the bacteria, toxins are released making them feel worse.  It can be scary when it happens, but it is a sign the antibiotics are working.  Although this reaction can vary individually, many people experience this at the beginning of treatment and every three to four weeks.  

During treatment, it is good for your brother to document his symptoms daily.  One way to do this is to list the three main symptoms he has each day with a numerical rating of their severity from 1-10.  Over time when he reviews this, he can see when his herxes occur and how he is responding to the meds.

 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.  He also lists diet, supplement, and exercise recommendations.  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. Singelton MD.

I hope your brother can start treatment soon.  He is lucky to have your support.


Buffster
New Member


Date Joined Oct 2008
Total Posts : 5
   Posted 10/15/2008 10:19 AM (GMT -6)   

 

Hi Ticker,

Thank you so much for your reply and all the helpful information. I have printed the article by Dr. Burrascano and I have requested another test kit from Igenex to test for those futher infections.

His results were

23-25 kDa. IND

32 kDa. IND

39 kDa. +

41 kDa. +

All the rest were negative. From what I know my brothers symptoms have been foot drop (severe), fatique, stomach problems, sore throat, light sensitivity, worse symptoms after alcohol, muscle pain and cramps. 

He had various tests done here in Ireland and was diagnosed with als/mnd. They didn't seem interested in testing for Lyme even though he has what looks like a bite on his leg (a small kind of purple lump right on the muscle that has gone weak and caused his foot drop) and after we researched and saw that Lyme symptoms were very similar to als/mnd we decided to get him tested ourselves. We're all very excited that this result is positive but are afraid to get our hopes up until it can be confirmed as Lyme (I know Lyme is awful but compared to als/mnd...) 

I will email you personally for the details of the UK doctor.

Thanks so much again for your help,

Kind wishes,

Kate

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