Hello, I am new to this board so any responses would be greatly appreciated. I have been on a diagnosis journey since November of 06. I am going to list the symptoms that I have had and the current ones that have not gone away. I have seen 4 Neuro doctors and the only firm conclusion is that I have mild ulner neuropathy at my left elbow. This makes my left pinky finger and the bottom of my hand numb when I bend my elbow for long periods of time and it especially wakes me up in the night. Have had 2 MRI's, EMG, Nerve Conduction Study and Evoked Potential test. This winter I felt terrible and symptoms included headach every day behind my left eye, fatigue, felt sick to my stomach at times, electric shock pain down both arms, burning pain in my forearms and back of my leg (hamstrings)to the point that it hurt to sit in a chair or put my arms on a table, cramping in my hamstrings, pain in my triceps and issues with muscle weakness that made it difficult to raise my arm above my head, blurry vision in primarily the left eye that will only last a minute or less at a time. Two times prior to falling asleep the muscles in my body were twitching uncontrollably to the point my wife almost called the ambulance, but they would finally stop like someone turned a light switch off. I actually feel better now than I did this winter. The remaining symptoms are constant ringing in my left ear, muscle twitches frequently throughout the day, and muscle thumps or jerks at times when I lie down to go to sleep. For instance my head will jerk slightly and I can hear a crunch sound too. I also don't have much capacity to exercise anymore. I ordered my doctor to test for lyme, but the blood work came back negative. This was done at a Lab Corp. It was not a Western Blot test. Based on my symptoms above and the fact that alot of them came on and then left should I further pursue seeing a lyme doctor for further testing? Once again your responses are appreciated.
Posted by davidx (Member # 8326) on :
I am not a doctor but I definitely think it is worthwhile to see a lyme doctor. Besides some of your hard-earned cash, you really don't have anything to lose and perhaps everything to gain.
Testing for lyme is very inaccurate. There are many people who do not test positive for lyme that have been infected with borrelia burgdorferi. Therefore, while it is possible your test is correct, it is also possible that your test was incorrect.
You seem to have (or have had) a constellation of different symptoms. It would be difficult to believe that since Nov 2006 you have all of a sudden come down with multiple ailments.
Good luck in your pursuit of answers!
-David
Posted by David95928 (Member # 3521) on :
You sound almost exactly like me five years ago. An ELISA from LabCorp is pratically worthless with, MAYBE, 30% sensitivity. At the very least, you should insist on a Western Blot AND insit on seing the results profile yourself. Labs and inexperienced (and idiotic) physicians sometimes eroneously assume that a Western Blot that doesn't meet CDC SURVEILANCE critieria it negative. NOT. There's a lot of information here about interpreting the bands but my position is if you were previously healthy and have any positive bands, odds are it's Lyme.
Posted by Tori (Member # 11647) on :
OMG!! What you just described was excatly what I experienced and exactly what tests were run. The only difference it that I was given heavy steroids during this time to stop the migraine( ineffective).
I finally had a WB and IGG/IgM done when a rheumatologist found inflammatory arthritis. The WB and IgM was +, but I was IGG -....I believe this was due to the steroids given to me. Corticosteroids (like Prednisone and Decadron) hamper the body's own immune process. I think that is why I had no IGG antibodies.
The Doxy and Zanaflex has helped with the muscle twitches but I go tomorrow to argue my case for more Doxy with the Rheumatologist.
All I can say is keep pushing the docs!!! You deserve an answer!
Posted by Lymetoo (Member # 743) on :
Don't stop your search for answers until you get a Western Blot from Igenex Labs.
Lyme Disease Symptoms List 1. Unexplained fevers, sweats, chills, or flushing 2. Unexplained weight change--loss or gain 3. Fatigue, tiredness, poor stamina 4. Unexplained hair loss 5. Swollen glands: list areas____ 6. Sore throat 7. Testicular pain/pelvic pain 8. Unexplained menstrual irregularity 9. Unexplained milk production: breast pain 10.Irritable bladder or bladder dysfunction 11.Sexual dysfunction or loss of libido 12.Upset stomach 13.Change in bowel function-constipation, diarrhea 14.Chest pain or rib soreness 15.Shortness of breath, cough 16.Heart palpitations, pulse skips, heart block 17.Any history of a heart murmur or valve prolapse? 18.Joint pain or swelling: list joints_____________ 19.Stiffness of the joints, neck, or back 20.Muscle pain or cramps 21.Twitching of the face or other muscles 22.Headache 23.Neck creeks and cracks, neck stiffness, neck pain 24.Tingling, numbness, burning or stabbing sensations, shooting pains 25.Facial paralysis (Bell's Palsy) 26.Eyes/Vision: double, blurry, increased floaters, light sensitivity 27.Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity 28.lncreased motion sickness, vertigo, poor balance 29.Lightheadedness, wooziness 30.Tremor 31.Confusion, difficulty in thinking 32.Diffculty with concentration, reading 33.Forgetfuiness, poor short term memory 34.Disorientation: getting lost, going to wrong places 35.Difficulty with speech or writing 36.Mood swings, irritability, depression 37.Disturbed sleep-too much, too little, early awakening 38.Exaggerated symptoms or worse hangover from alcohol
Could be Lyme!! Could also be Anaplasmosis, Babesiosis or Bartonella!!!!!!!!!!!!!!!!!!!! Or something else!!!
But def could be a TBD!!! Find a LLMD*)!*)!!!
Posted by bandit100 (Member # 11941) on :
Thanks to all of those that responded. I believe that I will find a LLMD and discuss the Western Blot test to rule out a TBD.
Roger
Posted by tvalentijn (Member # 5255) on :
actually...... The Western Blot looks for anti-bodies. If you were infected a while back, your body has stopped making anti-bodies a long time ago. That is why a lot of Western Blots come back (false) negative as well. I have never had a positive Western Blot...
What you need to do, in my humble opinion, is to make sure you get a PCR test done by Igenex. Go to their website to read about it. It actually finds the bacteria's DNA. This is the only positive test I have ever had for Lyme.
