I know someone who was initially diagnosed clinically with lyme disease but she stopped antibiotic treatment after just a couple months. She has continued to worsen after being off antibiotics and now she and her doctor think she might have Myasthenia Gravis. (See my other post for her Lyme western blot results and her testing history) http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic;f=1;t=049434
Her previous symptoms at onset of illness were paresthesias, tachycardia (with heart block documented on ECG), weakness, joint pain, scalp pain and numbness, Raynauds, brain fog.
Later after antibiotics ceased and she took beta blockers for tachycardia her symptoms above worsened, she complained of numbness progressed to entire body, and she had difficulty swallowing worsening brain fog, and dizziness.
Now several months later she has eye involvement and the eyes will droop and now she has occassional double vision.
*** Questions***
1. Did you have difficulty swallowing, muscle weakness, or drooping eyes that caused you to have a diagnosis of Myasthenia Gravis but then later were diagnosed with Lyme disease?
2. Did your symptoms that were Myasthenia like improve with antibiotic treatment or worsen over the long term?
Posted by timaca (Member # 6911) on :
The first neurologist that I saw considered Myasthenia Gravis as a possible problem for me. He told my PCP...she does NOT have this.
However, he did not think of lyme, which is what I had. I did improve on antibiotics.
Timaca
Posted by Katcon (Member # 9812) on :
I was hospitalized in August. The neurologist thought I might have Mythanesis Gravis.
Yes my right eyelid drooped, sometimes I could not swallow at all, and my legs would just collapse. The scariest part was difficulty breathing. It felt like my chest was collapsing.
I did test negative for MG, and Lyme as well in the hospital that is.
Thank God for Igenex. Thats's how I got my positive Lyme test and rocephin. I was on rocephin for 8 weeks. I am now on bicillin and orals.
Herxing on rocephin was very difficult.
Today I am a totally different person then I was in August. I am doing so much better. I would say 75% better.
Posted by bigmamma (Member # 7181) on :
quote:Originally posted by Nimzovich76: Did she get tested for AChR or MuSK antibodies?
Ok I saw from the previous post she was negative,
did they try the Edrophonium Chloride (Tensilon�) Test?
is it known whether is definitely an issue related to AChR?
I believe it was the AChR antibody test that was negative and I don't know yet if she had the MuSK test. No, they did not do the Tensilon test yet. The internist that thinks she has MG sent her to a neuro that said she doesn't have MG (based upon absence of symptoms at office visit and negative AB test). They are "waiting" for her symptoms to worsen to determine if the Tensilon is needed. She said to me, "How much worse can it possibly get?"
The answer to your last question: Yes, from everything I have read it appears to be problems with the AcHR that is the problem with MG. But like most neuromuscular disorders, including lyme, there is still much yet to be discovered.
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