posted
hello all, please help. I am just now entering the world of lyme disease. two years ago my husband (55 years old) began experiencing lots of problems with fatigue, sleep problems. Then last fall he started having some minor problems with memory and "finding words" while speaking. Some muscle twitches-started on anti anxiety meds and haldol for twitches. Problems became so bad it started impacting work, doctors thought it was a severe anxiety disorder. Very long devastating story short, his behavior changed, literally overnight, was hospitalized psychiatrically and diagnosed with frontal temporal lobe dementia-in a matter of months is a completely different man. Went to Mayo in Arizona. Every test negative. Even MRI was not one of a man with dementia, though EEK not normal. He has baffled all. Husband has been an avid hunter all his life. Was able to convince local doc to try doxy to see if this is lyme. Started yesterday. As I read all your posts I realize this is big and complicated and dont even know where to begin to educate myself adequately so I can continue to advocate for him. I am not ready to sign him over to a nursing home. I know this is long and convoluted but can someone help me. I am hoping that lyme is the answer but is it too late to reverse the disease? what do I do now, next.
Posts: 2 | From Lubbock, Texas | Registered: Dec 2010
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canefan17
Frequent Contributor (5K+ posts)
Member # 22149
posted
Someone will post some links for you soon -
I was responding because I see you're from Lubbock.
I went to Texas Tech and worked in Levelland aftr graduating : )
Goodluck on your Lyme journey. You've come to the right place.
A wealth of knowledge exists on this website.
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
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joalo
Frequent Contributor (1K+ posts)
Member # 12752
posted
It sure sounds like lyme to me. With proper treatment he can get better.
I'm bumping this up to the top for more support.......
-------------------- Sick since January 1985. Misdiagnosed for 20 years. Tested CDC positive October 2005. Treating since April 2006. Posts: 3228 | From Somewhere west of the Mississippi | Registered: Aug 2007
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posted
Yes-- make sure you get a good Dr. Most Dr's dont know what they don't know. I am a strong believer in second and third opinions. Get tested, be aggressive and do as much research as you can.
Posts: 844 | From CA | Registered: Apr 2010
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I'd suggest start by learning about the most common co-infections that come with Lyme. E.g. Babesia, Bartonella, Ehrlichia, etc... Dr. B's Guidelines outline them pretty well.
Try to document as much as possible about your husband's condition. When things started happening, the symptoms...
You'll need to be VERY thorough when you meet with a LLMD to get him the proper treatment. It's best to have as much prepared as you can.
And, get versed in understanding how the disease affects us. Maybe purchase the DVD 'Under Our Skin' to get a better account into the lives of several people with Lyme disease.
The disease manifests in a multitude of ways for many people. We are not all the same with Lyme. Major CNS problems usually indicates a co-infection other than Lyme disease -- at least it does for me.
Call a Lyme Literate Medical Doctor ASAP. Sometimes, it can be very challenging to get in with a good doctor within a reasonable time period.
I wish him well!
Posts: 829 | From MD | Registered: Dec 2009
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
It is very important to see an LLMD as soon as possible so your husband is correctly evaluated and treated.
Most main stream doctors believe lyme is an insignificant disease cured with three weeks of antibiotics and any remaining symptoms are either an autoimmune reaction after the infection has been cured, or totally unrelated. Read the book Cure Unknown to understand what you are up against as well as all the research that proves otherwise.
Most of us are infected with more than one pathogen. They have overlapping symptoms as well as some symptoms specific to individual infections. It is important to diagnose and treat everything.
Often test results are not conclusive for lyme and the co-infections. Lyme can change it outer protein to fool the immune system making it a "moving target". Your body has to recognize the pathogen and produce antigens against it to get a positive test. So often a trial run of antibiotics is the best way to determine if the person is infected.
Assuming your husband is infected, he should be taking 200mg of doxy twice a day. This will cause a herxheimer reaction which is when the die off overwhelms the body with toxins. He will feel worse - often much worse.
I was told not to bother testing in my state and I didn't for several years. But now I test CDC positive for three infections in a state where there is only one documented case of lyme. Not me as I am not even on record, and although they have been told about me they don't want to change their opinions, so I am ignored.
It is real important to be proactive and study and read whatever you can as well as travel if you need to to find a LLMD. Keep coming back for support and help. You are not alone.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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