LDN-Low Dose Naltrexone?? Testing for Lyme?

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glamourgirl
Regular Member


Date Joined Apr 2008
Total Posts : 460
   Posted 3/31/2009 4:44 PM (GMT -7)   
I was diagnosed w/ulcerative colitis 6 years ago.  about a month ago I started taking LDN.  Pretty much as soon as I started taking it, I was having joint and muscle pains.  Now that I've been on it for 4-5 weeks, I'm in so much pain.  I called my doctor that prescribed it for me and he wants me to get tested for Lyme.  I don't have any symptoms of Lyme but he thinks maybe the joint pains are coming from it and it's just a coincidence that they started the same time I started LDN. I really don't think that I have Lyme.  I don't want to fork over hundreds of dollars for the tests.  They told me to simply get a blood test but in reading about the tests, it doesn't sound like walking into my regular doctor for a blood test will be accurate.  Any thoughts?  I'd like to get the most basic test done since I don't believe I have any symptoms.  *As a side note, joint and muscle pains are side effects of the medicine too so the Lyme diagnosis sounds like a far stretch!
Female, Age 38
Diagnosed w/c.diff 7/02 when pregnant w/1st and only child during 2nd trimester(wasn't on antibiotics)
C.diff flare within weeks of delivering baby 1/03, Diagnosed with UC 2/03
Current Meds:
LDN - 2/17/09 1.5 mg., increased to 3 mg. 3/3/09
Ferrex Forte
Acidophillus, Sacchromyces Boulardii, Oil of Oregano


glamourgirl
Regular Member


Date Joined Apr 2008
Total Posts : 460
   Posted 4/1/2009 4:25 PM (GMT -7)   
Bumping this up. Anyone?
Female, Age 38
Diagnosed w/c.diff 7/02 when pregnant w/1st and only child during 2nd trimester(wasn't on antibiotics)
C.diff flare within weeks of delivering baby 1/03, Diagnosed with UC 2/03
Current Meds:
LDN - 2/17/09 1.5 mg., increased to 3 mg. 3/3/09
Ferrex Forte
Acidophillus, Sacchromyces Boulardii, Oil of Oregano


ticker
Veteran Member


Date Joined Feb 2003
Total Posts : 9208
   Posted 4/1/2009 5:00 PM (GMT -7)   

Hi glamourgirl, welcome to the Lyme board!

I think your doctor is smart for wanting you to get tested for Lyme.  So many doctors are ignorant about this disease.  From what I understand, LDN helps the immune system function better, and it sounds like you have experienced symptoms since starting it.  I am not a medical professional, but I think it is possible that your symptoms could be a result of your immune system fighting something since it is working more efficiently.  LDN is sometimes prescribed for Lyme patients.

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

Tickls can also transmit several co-infections.  No Lyme test is completely reliable, and results can vary by lab.  It is my understanding the ELISA or titer is the least reliable test and the one most doctors run first.  The Western Blot is a better test, but it should be done at a Lyme reputable lab such as IgeneX in Palo Alto, CA.  You can call them at 800-832-3200 and ask them to send you a testing kit.  You can also ask about the price.  You take the kit to a doctor who is willing to draw the blood and send it back.  The results will be reported to the doctor.

The Western Blot lists a series of numerical bands with a + - or IND rating after each one.  Although the CDC requires several bands to be present 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.  Labs such as Quest and LabCorp do not list all the Lyme specific bands that IgeneX lists.

While it is possible you may be having side effects from the med, I think it is a good idea to at least have the Western Blot test done. 

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