posted
4 1/2 weeks ago My Husband woke up with facial paralyses. We went to the hospital and they ran tests and diagnosed him with having bells palsy. A week ago he started to have some severe abdominal pain and was admitted to the hospital. We are on day 5 and they've done every test imaginable and still have not been able to diagnose his condition. So I started to do some research to see if I can find anything related to the bells and this pain --I found Lyme. I am a bit concerned as I don't know much about this disease or even what tests they would need to perform to check accurately. I am also concerned about recovery if in fact he does have it. Please advise.
Thank you!
Posts: 3 | From New York | Registered: Dec 2011
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posted
Talk to his doctor and voice your concerns to him.
Has he had a tick bite or been in an area where there is the chance that he could have been bitten without knowledge?
There are labs that can be done to diagnose Lyme, but Bells Palsy ranks right up there with symptoms.
Has your husband had any unusual rashes, especially a bulls eye rash on any part of his body?
Has he experienced flu like symptoms that are unexplained?
Has he been running a fever?
Has he had problems with memory or with his speech?
Has he experienced diplopia (double vision) or any visual disturbances?
Has he complained of any other neurological pain or problems?
Lyme is a great mimic. But it can be successfully diagnosed and treated.
Don't be afraid to speak up to your doctor concerning the possibility and ask for testing.
Good luck and I hope your husband gets to feeling better.
-------------------- Why don't they make Front Line for humans? Think about it! Posts: 78 | From North Eastern Missouri | Registered: Oct 2009
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posted
Go to an LLMD. You can find one at lymediseaseassociation.org, use the doctor referral. Hurry as if this goes on without treatment he may be sick forever or have to undergo very expensive treatment or both. Or contact ilads.org for the name of a doctor. It is a clinical diagnosis, tests are not 100% reliable, and he needs tests for lyme coinfections too. (babesiosis etc). Do get the igenex tests.
Posts: 13 | From san francisco | Registered: Jul 2010
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posted
Or of course go to the Seeking a Doctor forum on this site! The docs at the hospital will not know enough about Lyme and will probably only do an ELISA test, which is often wrong.
Posts: 13 | From san francisco | Registered: Jul 2010
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TF
Frequent Contributor (5K+ posts)
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posted
Good for you for thinking of lyme disease. When I had it, I had bells palsy on both sides of my face, a mild case. Never even knew that is what it was until I got my lyme diagnosis years later.
I also had horrible episodes of abdominal pain. Because of the horrible pain, I had a colonoscopy followed a few months later by a sigmoidoscopy because my gastro just felt he had to check again.
I also went to the ER with this abdominal pain at least a year or more later after I laid at home with it for 10 days and the gyn could not find anything wrong.
ER did a full body scan and found nothing and sent me home.
So, all that to tell you that if it is lyme disease, the doctors can do all the tests they want, nothing will ever show up. That is what went on with me for 10 years before I finally went to a doctor who thought of lyme and tested me for it.
The Quest and LabCorp lyme tests miss about half the people who have lyme. But, if you get a positive test, you have your diagnosis. If you get a negative test, then find a doctor who will test hubby through Igenex. They are a tick borne disease specialty lab in Calif. They have a much higher success rate. Their website has been given to you above.
However, there is no foolproof lyme test. So, because of that, if he keeps getting negative test results and still has no diagnosis, a good lyme doctor will interview him and decide if it sounds like lyme or not. If he believes he has lyme, he will begin treating him. That will tell the tale.
Sorry, but that's the way it is even in 2011. Here is a quote for you from the Burrascano Lyme Treatment Guidelines:
"DIAGNOSTIC HINTS
Lyme Borreliosis (LB) is diagnosed clinically, as no currently available test, no matter the source or type, is definitive in ruling in or ruling out infection with these pathogens, or whether these infections are responsible for the patient's symptoms. The entire clinical picture must be taken into account, including a search for concurrent conditions and alternate diagnoses, and other reasons for some of the presenting complaints. Often, much of the diagnostic process in late, disseminated Lyme involves ruling out other illnesses and defining the extent of damage that might require separate evaluation and treatment.
Consideration should be given to tick exposure, rashes (even atypical ones), evolution of typical symptoms in a previously asymptomatic individual, and results of tests for tick-borne pathogens. Another very important factor is response to treatment- presence or absence of Jarisch Herxheimer-like reactions, the classic four-week cycle of waxing and waning of symptoms, and improvement with therapy." (page 7)
Dr. Burrascano was considered the lyme guru of the world before his recent retirement. People came from all over the world to be treated by him. I suggest you read this entire document to get some knowledge of this disease. It could very well be what your husband has.
For the 10 years I went undiagnosed, my blood tests always came back entirely normal. Sonograms came back normal. Colonoscopy, full body scan, etc. That is because with lyme disease, there are no blood abnormalities that will show up on routine blood tests. Same with body scans.
But, when they test your blood for lyme, babesiosis, and bartonella, then you get some positive results. Trouble is, the standard doctors do not know that their tests are so unreliable. They don't use Igenex and generally won't use that lab even if you ask them to. It all has to do with the major medical controversy that surrounds lyme disease and has surrounded it for years.
Here is a program done by a news station in Boston a few years ago. It explains the controversy. Note that many people say over and over again that they got negative lyme tests and were told they did not have the disease, only to discover years later that they actually did.
Just want you to know that it is now nearly 7 years since I got rid of lyme and its coinfections. I completed my treatment that long ago and I am still symptom free, enjoying my life. I have the same life I had before lyme disease.
However, that kind of result is dependent upon getting a top notch lyme doctor. Many doctors treat lyme disease, but only a few know enough to get rid of it for a person. That is my conclusion after being around this disease for over 9 years now.
Keep reading and asking questions. Don't ever stop looking for an answer. I had to persevere for 10 years before I got my diagnosis. That's what happens if you never see a tick and never see a rash.
Posts: 9931 | From Maryland | Registered: Dec 2007
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