I recently received a diagnosis of "highly likely lyme disease/neuroborreliosis" from an LLMD, but have strong doubts about that diagnosis. The main reason is that my symptoms seem to be vastly different, milder - and fewer in number - from those experienced by most of you. Another reason is that I suffered a nerve injury that could, at least in theory, also have resulted in a chronic CNS disorder.
To help me decide how to proceed from here, I would like to get a sense HOW MANY of you - if any - have ANY or ALL of the following symptoms ONLY AND NO OTHERS:
1. Intermittent, multi-focal peripheral nerve pain: i.e., carpal tunnel-like pain along several nerve paths both in lower and upper extremities, on both sides of the body (right and left), brought on by exercise,stretching, load-bearing, relieved by rest. Pain intensity varies, but generally mild to moderate.
2. Slightly irritable bowel
3. Moderate spinal problems: mostly low back pain, sometimes also neck and upperback.
4. Mild, intermittent muscle twitching in different parts of body.
Please respond even if your symptoms DON't fit (by saying something like "NOPE,I have way more/different symptoms"). This way, I will get a better sense of how likely or unlikely it is that the above symptoms are actually caused by borrelia.
Personally, I don't think that these three symptoms are enough for neuroborreliosis, but my MD seems to think otherwise, mostly because of my history/test results (a lot of hiking and a negative IGM/indeterminate IGG Western blot). More on that later!
Thanks so much for your input!
RobertH
Posts: 4 | From Los Angeles, CA | Registered: Jan 2006
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posted
My symptoms are milder than most around here, though I do feel like crud most of the time. I have the neuro stuff mostly, but I have joint pain on and off, heart/chest pain, ear pain, sick feeling like flu but never really the flu, fatigue, out of body feeling, dazed and confused, depression, and all kinds of strange things, lately, it's been my heart, at least the treadmill came back normal.
But back to your original question, be glad, I have always been able to work, 13+ years with this stuff, oh it's been hard, but I've never truly been disabled, rarely to I have totally normal days but how wonderful when I do. Anxiety and dread I know well.
You don't have to be totally crashed to have lyme, many of us hang in between the totally sick and totally healthy range, a sort of pergatory of lyme if you will.
Posts: 121 | From Memphis, TN | Registered: Dec 2004
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ticked in ri
Unregistered
posted
Yes, I've had each of those symptoms. Nerve pain and/or muscle pain in all extremities with some burning sensations thrown in. The pain was mild to moderate. I had to sit down a lot which would feel better than being on my feet.
I had a mild irritable bowl that lasted about 3 months and then seemed fine.
I've had discomfort in my back (upper and lower) and discomfort in the back of the head/neck area.
I've had muscle twitches all over (arms, legs, feet, back, neck, abdomen...)
I have been on abx for 9 months and feeling better. My Igenex western blot is not conclusive. I had indeterminate Igm on band 39 and 41 and + on 45 and 58. Doctor says it's a weak positive.
I am feeling better on abx and those annoying twitches are almost completely gone.
Lyme is a possibility. Perhaps there's more testing that can be done.
One thing you did not mention is how long you have been sick. Makes a big difference as to severity of symptoms.
My opinion is that Lyme attacks the weakest part of your body.
Hubby has had a life-long history of G.I. problems.
His first Lyme symptoms were nausea/vomiting/dry heaves -- diagnosed as chronic gastritis (etiology unknown) by endoscopy. Lost 30 pounds in 6 months, then diagnosed with 3
different G.I. parasites -- treated for that and thought we might have actually found the cause of his illness.
Weight loss and malabsorption of food led to severe mood disturbances and adrenal fatigue which caused fainting spells.
However, Parkinsonian tremors did not go away (his 2nd group of symptoms). These symptoms continued to progress over next 5 years. Now has tremors/myoclonus/seizure-like episodes.
Never had any pain until about 3 years into illness when started treating Bartonella and then Babesia.
The seizure-like episodes did not begin until initiated treatment for Lyme with an herbal protocol (1 1/2 years after illness began)-- we didn't know enough about tick-borne
diseases at the time and didn't really understand about herxing -- maybe a slower treatment plan would have been a better alternative.
Bell's Palsy didn't show up until year 4.
I can't tell you whether you have Lyme disease or not -- my suggestion would be to try antibiotics or herbs (Healing Lyme protocol)for a week or two -- in my opinion within that length of time you will have some sort of reaction if you have Lyme.
You might actually feel better for 2 or 3 days and then when the die-off starts you will know if you are herxing.
If nothing happens, then give it a month. After all, what is one month out of the rest of your life?
You owe it to yourself to prove the LLMD right or wrong -- do it now so the healing can begin.
This is just my opinion and not medical advice.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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LostCityAgent
Unregistered
posted
Those symptoms are variable and non-specific but could be accounted for in Lyme.
I myself, have experience them. Compared to what could be accounting for them I would appreciate the Lyme dx. Though that may sound nuts.
I thought my symptoms were not as bad as others here too until I began herxing on the meds. WHOA BABY!!
Got any of these symptoms??
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
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Answering your post:
1. Nerve issues. I have bilateral peripheral neuropathy in the radial nerves of both arms. A dull aching frequently for no apparent reason, band-like shrieking pain sometimes, just for fun. "Absent cortical responses" on somatosensory testing with neuro duck. Lower extremities fine. I can run like the wind, assuming I can stay awake long enough.
2. Ahem - "Bowel issues." Constant diarrhea. I am talking constant here. Break out the TP and clear the john. LLMD says autonomic or auto something-or-other. A nervous system thing.
3. Spinal issues-Neck of steel sometimes, rest of me good to go.
4. Other stuff. - Numbness in face, arms, hands, eye twitching, vision problems (palinopsia). Headaches of a caliber to make you consider frontal lobotomy. Extreme hyperacusis. Memory of a petunia.
I had a history of bites, a CDC positive western blot (IGM), plus IGG equivocals bands at 23-25, 30, 31, 39, 41, 45, 58, and 66, and multiple brain lesions on MRI.
Bb can penetrate into your brain extremely fast after you're bitten and once there, you have virtually no defenses against it. Upper extremity pain or neuropathy/radiculopathy is a serious sign of neuroborreliosis, especially bilateral. You do NOT want to mess around with this stuff!
Lyme is very individualized, rarely picking on two of us in the exact same manner.
I would trust my LLMD if I were you and see how treatment goes!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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posted
I used to question my diagnosis as well because my symptoms were much milder than most. Yup, I have had or still have all of the symptoms you are describing. Muscle twitching, strange transient feeling down my spine that comes and goes, upper back and neck pain that comes and goes, GI problems, visual disturbances, hearing fluctuations.
With Lyme you can't compare yourself to others because the same strain in one person can produce totally different symptoms or degree of symptoms in another person. Listen to the LLMD he sounds knowledgeable.
Posts: 649 | From United States | Registered: Dec 2003
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