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How long will the pain go on?


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My DD8 in month 5 of treatment for late misdiagnosed Lyme, she took 60 days of augmentin/biaxin and now 60 days of Doxy, switching back to the first combo for school. I think she was infected 2.5 years before Lyme detected. She also has PANDAS/Myco and a few co infections, so far testing negative for Bart and Babesia. She had terrible hip arthritis that went away after the 60 days of Augmentin/Biaxin. Other leg pain continued, but she has been doing much better. Yesterday we went to the beach, after a few days at Hershey park and Sesame. I thought the salt water would be a good detox. Boy was I wrong. Had a horrendous episode last night, she said she was in massive pain all over and was afraid to go to sleep because she thought she would die. She flat out refuses to take Advil, I rubbed her legs with Aspercreme and snuck some advil into her milk (not enough of a dose though). After about 30 minutes she seemed to get better moodwise. My question is, should she be in so much pain after 4+ months of heavy treatment? Do I need to consider IV abx? (our LLMD thinks we are a long way off from that). could something else be wrong? Why would the ocean cause this? I have noticed a definite link between swimming and PANDAS symptoms, but I thought it was chlorine. But this massive pain flare has not happened since she started heavy abx. All thoughts welcome. BTW she was awesome on our trip, had a blast, got along with her sister, and almost no complaints.

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My DD8 in month 5 of treatment for late misdiagnosed Lyme, she took 60 days of augmentin/biaxin and now 60 days of Doxy, switching back to the first combo for school. I think she was infected 2.5 years before Lyme detected. She also has PANDAS/Myco and a few co infections, so far testing negative for Bart and Babesia. She had terrible hip arthritis that went away after the 60 days of Augmentin/Biaxin. Other leg pain continued, but she has been doing much better. Yesterday we went to the beach, after a few days at Hershey park and Sesame. I thought the salt water would be a good detox. Boy was I wrong. Had a horrendous episode last night, she said she was in massive pain all over and was afraid to go to sleep because she thought she would die. She flat out refuses to take Advil, I rubbed her legs with Aspercreme and snuck some advil into her milk (not enough of a dose though). After about 30 minutes she seemed to get better moodwise. My question is, should she be in so much pain after 4+ months of heavy treatment? Do I need to consider IV abx? (our LLMD thinks we are a long way off from that). could something else be wrong? Why would the ocean cause this? I have noticed a definite link between swimming and PANDAS symptoms, but I thought it was chlorine. But this massive pain flare has not happened since she started heavy abx. All thoughts welcome. BTW she was awesome on our trip, had a blast, got along with her sister, and almost no complaints.

I think you should read the warning label on apsercream Aspercreme Cream should be used with extreme caution in CHILDREN younger than 12 years old; safety and effectiveness in these children have not been confirmed. Read more at http://www.drugs.com/cdi/aspercreme-cream.html#018KIuBsTDIQXEYZ.99

Also your are mixing ibuprofen with aspirin the active ingredient in aspercreme. Never take aspirin and ibuprofen together even in adults. Also aspercream contains the following chemicals which should be avoided

DMDM Hydantoin

Phenoxyethanol

Propyl Paraben

I know little about PANDAS except that my grandnephew was just dx'd with it. As for Lyme everybody is different in terms of recovery.

Red

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Thanks, I didn't realize about the mixing. When I see her like that it's so hard to see her in pain and not be able to do anything. I bought some Arnica natural cream but the warnings I found on the internet seem scary. She said the pain lifted so hopefully we are through this one.

 

My DD8 in month 5 of treatment for late misdiagnosed Lyme, she took 60 days of augmentin/biaxin and now 60 days of Doxy, switching back to the first combo for school. I think she was infected 2.5 years before Lyme detected. She also has PANDAS/Myco and a few co infections, so far testing negative for Bart and Babesia. She had terrible hip arthritis that went away after the 60 days of Augmentin/Biaxin. Other leg pain continued, but she has been doing much better. Yesterday we went to the beach, after a few days at Hershey park and Sesame. I thought the salt water would be a good detox. Boy was I wrong. Had a horrendous episode last night, she said she was in massive pain all over and was afraid to go to sleep because she thought she would die. She flat out refuses to take Advil, I rubbed her legs with Aspercreme and snuck some advil into her milk (not enough of a dose though). After about 30 minutes she seemed to get better moodwise. My question is, should she be in so much pain after 4+ months of heavy treatment? Do I need to consider IV abx? (our LLMD thinks we are a long way off from that). could something else be wrong? Why would the ocean cause this? I have noticed a definite link between swimming and PANDAS symptoms, but I thought it was chlorine. But this massive pain flare has not happened since she started heavy abx. All thoughts welcome. BTW she was awesome on our trip, had a blast, got along with her sister, and almost no complaints.

I think you should read the warning label on apsercream Aspercreme Cream should be used with extreme caution in CHILDREN younger than 12 years old; safety and effectiveness in these children have not been confirmed. Read more at http://www.drugs.com/cdi/aspercreme-cream.html#018KIuBsTDIQXEYZ.99

Also your are mixing ibuprofen with aspirin the active ingredient in aspercreme. Never take aspirin and ibuprofen together even in adults. Also aspercream contains the following chemicals which should be avoided

DMDM Hydantoin

Phenoxyethanol

Propyl Paraben

I know little about PANDAS except that my grandnephew was just dx'd with it. As for Lyme everybody is different in terms of recovery.

Red

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We make up our own Arnica from flowers soaked in grain alcohol. We soak it in the sun for 6 weeks and then drain off the alcohol. I would not use it on a child but we find it very effective for minor aches and pains. Now when it comes to my bartonella pain then we are talking something different.

She might or might not be herxing. If it continues you might consider backing off the meds. I am a big believer in backing off meds during major herx type events, whether caused by die off or inflammation. I believe that it overloads the body and the mind. And then to think of an 8 years without the intellectual/frontal lobe ability to understand what is going on just makes it harder on her.

Red

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My DS8 (PANDAS/Lyme) has had horrible pain since the age of 3, sometimes so bad that he couldn't walk. This symptom is what made me look beyond PANDAS and discover lyme. He started lyme treatment at age 7. Pain complaints continued with treatment, and were often severe in response to a med or dosage change. After 10 months of aggressive treatment with high-dose combo antibiotics (orals) the pain complaints finally stopped. He hasn't had a pain complaint now in 3 months, but we are still treating for psych symptoms.

 

That's just our experience so far.

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