posted
My husband is very ill and the drs are stumped. It started in early 2006 - he would wake up with what seemed like pulled muscles in his back. Like maybe he slept funny.
It didn't happen a lot. He tried muscle relaxers a couple of times and saw a chiro.
It progressed and by fall of 2006, he was having muscle spasms almost everywhere (almost all muscles in his body) and the spasms cause muscle knots and very bad pain.
He doesn't have muscle weakness, so most neurological problems have been ruled out. All neurological tests have been normal and all bloodwork has been normal.
But his muscles spasm all the time and he is in so much pain he can barely function. Sometimes he loses control of his muscles.
He does not seem to have any other symptoms that we know of, but is tired, not sleeping well, irritable because of the constant pain.
Has been diagnosed as fibromyalgia, but also told it wasn't that either.
We have talked to a couple of drs about "could it be lyme?" and they dismiss it. Granted, they are neurologists.
Is it possible this could be lyme or am I crazy? I am not a dr obviously, but I can't help but wonder? The neurologists are saying he may just have to live with it.
He had a blood test in May 2007 for lyme and it was negative so none of the drs want to pursue that.
Should we be pursing lyme or some other tick diease? We're desperate for any advice.
posted
My Lyme disease started by me experiencing muscle spasms throughout my body. I was also disregarded by doctors and had a negative blood test. I would recommend taking your doctor to see a Lyme literate doctor as soon as you can. Try posting in the seeking a doctor section.
Good luck, Lindsay
-------------------- "One day at a time"
Current: -1.2 IM bicillin three times a week -1.25 IV Vancomycin every day -IV glutathione and IM B12 -Byron White since Jan. 2011 -ALA, Yasko protocal, Adapten-All, thyrosol, Pekano, phosphalipid exchange, probiotics, oregano... Posts: 390 | From FLORIDA | Registered: Jun 2007
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posted
Could very well be Lyme disease. Trust me, no neurologist would work very hard to "find" lyme disease. Just my opinion.
Find a qualified Lyme Literate MD in your area......which will be very difficult. Hold the Mayo, by the way!!
If you will post in Seeking a Doctor, we can help you find someone. You may have to travel, but it will be worth it to your suffering husband!!!
I am posting the symptoms list for Lyme and Babesia. Maybe something will look familiar to you besides the muscle spasms.
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
The following signs/symptoms may be present in those infected with Babesiosis: Fatigue* Arthralgias* Myalgia* Drenching sweats* Headaches* Emotional lability* Depression* Dark urine* Splenomegaly* Dizziness* Nausea and vomiting* Cough* Dyspnea* Fever* Chills* Hepatosplenomegaly* Jaundice* Malaise* Shortness of breath* Bleeding tendencies, bruising* Thrombocytopenia* Hemoglobinuria* Hyperesthesia* Pulmonary edema* Encephalopathy* Low to normal range leukocyte counts* Possible elevated levels of dehydrogenase, bilirubin, transaminase* Anorexia* Approximately 25%- 66% of Babesia patients are known to be co-infected with Lyme disease. These symptoms may continue for long periods of time, decrease, then return. A low Babesiosis titer (IgG) often indicates a chronic infection. An acute or current infection may show a higher reading on the IgM test initially. There are over 100 species of Babesia in the United States but only ONE or TWO species are currently checked by commercial labs.
posted
I have read a lot of posts now on this forum and other info and I really think it could be lyme.
However, I don't want to take a bunch of time off work to travel out of state to work with a LLMD if it's not lyme.
Is there something we could ask his primary care dr to do (a test? a prescription?) to try and see if it is lyme before we travel?
I am really thinking lyme is possible, but I just don't know what to do next.
Any advice appreciated.
Posts: 8 | From MN | Registered: Jul 2007
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
If you suspect lyme you could get re-tested threw igenex. It's the best lab in the country because it reads all the lyme bands. Their webb site is www.igenex.com
Any lab can draw the blood for the test. You just need a doctors signature ,the paper work from them & have the blood & paper work overnited to them.
Although a negative test doesn't rule out lyme The tests for lyme at most regular labs are iffy at best. Here are a few reasons why you can still have lyme & test negative:
posted
Your husband's symptoms sounds similar to my daughter at the onset of her lyme disease.
Educate your self, it is definitely a good step to see a Lyme Literate MD.
A LLMD will help your husband not only to diagnose/discard lyme, but to find what is going on with him...
Posts: 983 | From The sky | Registered: Feb 2005
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Hi flower_flr
Just a quick thought. If you can't find a lyme literate doctor right now, you could print out Dr. B's guidelines to take to your current doctor. He's a foremost authority on lyme & lyme co-infections. Hopefully your doctor may be open to reading it:
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
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