posted
I have had chronic lyme since 2005, one of my first symptoms was numbness of face, head and legs., that never went away during abx treatment. Now years later, still sick, my lips went numb December 15th and now my cheeks on one side of my face feel numb, different than the other side. I am on doxy. Does anyone know why this new numbness is going on, it scares me to death. I am going to see a neuro lyme specialist in one month but what should I do in the meantime. I also have bart, myco pneumonie, etc. Is this numbness serious? Could I call my llmd? Diana
Posts: 256 | From Boston, mass | Registered: Jan 2008
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
At a lyme conference a number of years ago, Dr. Burrascano said, "If the treatment is inadequate, the disease will continue to progress."
He said that in answer to my written question, "What do you think of a patient on high-dose antibiotics who develops a new symptom--trigeminal neuralgia?"
With his answer, I knew I had to change lyme docs. It was the best thing I ever did for my health.
My lyme doc had me on mono-therapy (just one antibiotic, even though it was high dose). After 2 years of that, my disease began to progress again--I got the trigeminal neuralgia. This symptom is totally unbearable. Feels like you are being electrocuted in the face. Good lyme treatment by a new doctor got rid of it and I didn't get any more new symptoms. I just got rid of old symptoms.
So, if your numbness is progressing, why not compare your treatment to the Burrascano Guidelines found here:
I don't think you have to be alarmed, but you want to think about whether or not you have the best lyme doctor for your case. Are you just on doxy? If so, that could be the problem.
I had undiagnosed lyme disease for 10 years. I went to a total of 3 different lyme doctors in order to get cured. The 3rd doc followed the Burrascano guidelines. That's what worked for me. All of my symptoms went away--as in A-L-L.
In March, it will be 6 years since I completed my treatment and I am still symptom-free, enjoying my life. My lyme doctor got rid of his lyme 10 years ago and he is still symptom free also. (He had it for years undiagnosed.) And, I have at least 4 other friends that can say the same. So, don't think you can't get rid of your lyme and your symptoms.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Hi Diana, I have the same symptom periodically. I didn't see your post and posted a new topic on this same subject. Did you talk to your LLMD? What did they say?
Posts: 100 | From USA | Registered: Sep 2010
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posted
Doxy is good but I hope you're on at leat 400mg a day? That's the only way it will get at the Lyme. It also treats myco and bart which I assume is why you're on it, lol.
Bartonella causes me these problems on the right of my face. Lyme tends to cause it on the left of my face. Mycoplasma is well known to cause bell's palsy as well. So having all three, it's no wonder why you have this symptom still!
Inadequate treatment might be the cause, especially if after five years you are no better. Something is NOT right if after five years you have not improved.
I got much better on Doxy alone, as you can see from my signature I have the same combination of infections as you. Doxy is GREAT but you have to take it the right way.
If you just started it or upped the dosage you may be having a herx reaction, which I HOPE would be the reason. This is too long to be ill with no change in symptoms
little olive
-------------------- Myalgic encephalomyelitis, 2002 | Viral onset, following Hep B vaccine Lyme since '06 | Bartonella since '08 (cured) | Mycoplasma pneumoniae since '08 IGeneX: IgM 31IND 34IND 41+ | IgG 39IND 58+ 41+++ IgG deficiencies and MTHFR 677TT mutations Posts: 512 | From USA | Registered: Sep 2010
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