posted
My husband got Lyme disease in 78'. He was sick for about 4 years with every classic Lyme symptom except the neuro stuff. He was given 14 aspirin a day and was sent on his way. In 1982 he did an intense sweat program and he thought it went away because the symptoms disappeared. Well about 4 years ago he started having weird symptoms; asthma, chronic sinus infection, fatigue, muscle aches and a few muscle twitches. In October 2003 he had hernia surgery and bammo. Muscle twitches started in earnest and he got very fatigued and weak.More Chronic infections and generally feeling like crap. Went to a neuro who said he had ALS and when we mentioned Lyme, she said noway but would test him anyway. The ELISA came back very positive. He went to an infectious disease guy, who put him on Rocephin IV for 30 days but could do nothing else for him because of CDC and Oregon regulations. They sent him on his way saying Lyme wasn't his problem. Well, since the Rocephin, he is no longer fatigued, headaches and the runs are gone, insomnia is gone. He hadn't slept for more than 4 hrs a night for years and now sleeps through the night. Basically all the symptoms are gone except the muscle twitches and weakness. He saw another Dr. and the guy said not to go back on antibiotics. We paid for Igenex to do the Western Blot and the LLMD we were referred to called with the results and said it came back "very strong positive". Does that mean he still has the infection and should go back on the antibiotics? Anyone know. He's seeing the LLMD next week for the first time and I just wanted some input. Does the neuro stuff need longer treatment? The weakness is still there although he can now make it up the stairs without leaning on the railing but he still has trouble walking. Any advice?
Posts: 33 | From Portland Oregon USA | Registered: Feb 2004
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David95928
Frequent Contributor (1K+ posts)
Member # 3521
posted
A month of Rocephin is highly unlikely to cure a twenty-eight year infection. Keep that LLMD appointment. David
Posts: 2034 | From CA | Registered: Jan 2003
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lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
I have been on and off oral and iv antibiotics now since 1997. The darn thing keeps comming back. Sometimes the physical pain or tremors are the worst sometimes it's the psycological symptoms that are worse.Please try to understand the severity of a persistant resistant bacillus/virus/fungus with any number of coinfections and mutations and symptoms that go with them. You must keep the patient alive and somewhat sane until a cure is found. Do I like the effects of the abx's on the body? NO!? But I see no other choice until a cure is found. good luck and God Bless you both,,,,,,,,,the zman
Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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minoucat
Frequent Contributor (1K+ posts)
Member # 5175
posted
Go see the LLMD. You haven't scratched the surface of how bad this disease can get.
My husband was diagnosed with LD after having had the infection for at least 3 years. After being very healthy, he had a surgery and slowly slid downhill. After his dx, he did 6 weeks of Rocephin, felt fine, went back to work, everything was wonderful.
6 months later he was far, far worse than ever before, and 6 months after that he was completely incapacitated and in bed for a year. It's been a long, dark, horrible climb out of that hole ever since.
I'm so sorry, but you have a very long way to go on this. There is evidence that Rocephin in particular induces the cyst form of LD which later reverts to the spirochetal form. I believe that this is what gives an appearance of cure, but in fact result in a florid, deeply imbedded infection if it is not followed with additional tx.
posted
God-- What a mess this has turned into for you. So sorry to hear that he is doing this bad. Ask your LLMD about having him go on a different antibiotic IV because Rocephin is kind of a base line start out drug for IV patient and probably isn't nearly as strong enough as what your husband needs. hang in there and good luck
Posts: 227 | From CA | Registered: Apr 2004
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