Hi MaryR!
How are you doing?
I will always remember that when I was terrified, you stayed online and held my hand when my child was so sick and suffering! Thank You!!
And you make really cool jewelry!! 
Do you rembmer that weird hand rash that looked like bicycle gloves on my child's hands? It progressed from being itchy to painful and her hands were frozen in a claw like position. I think the rash was a reaction to an inactive ingredient called "povidone". If anyone else has weird things happening, check out the inactive ingredients in the meds!! The rash first appeared when she was on topiramate. We stopped all her meds at the time not knowing what was going on. It took the rash about 8 weeks to clear (end of January). She didn't have any rash again until April when she started another generic med called "hydroxychloroquine" and the rash returned. We immediately stopped all meds until the rash went away. It only took a few days to clear this time because we immediately stopped as soon as the rash had started. We discovered that "povidone" was an inactive ingredient in both the topiramate and hydroxychloroquine. It did not appear in any of her other meds. I requested brand name Plaquinel instead of the generic. The hand rash has not return.
There have been significnat improvements and some relapse with the disease.
Antibiotics were started back in February. After 4 weeks, she walked out of her room and said "my brain fog lifted" (she looked suprised and amazed), her gut stopped hurting and bowels returned to normal movement. Each month saw marked improvements and decreased symptoms.
Aug 9, her headache left, a few days after the hyeracusis and tinnitus left.
From Aug - Oct she was getting stronger, more active, wanted to do more things and began making plans for school and trips.
She had been sx free from about mid Aug to end Oct, so we tried reducing/changing meds.
Within 10 days all her old symptoms returned. Oddly, they returned in the same order they had first appeared: very sore throat, abd pain/abnormal bm, headache, hyperacusis, sharp pain tinnitus.
Returned to old protocol, partial recovery in 5 days, but still sick, headache back, wanted to stay in room/bed. LLMD felt it was a relapse. Meds changed.
It's about a week later on the new meds, her headache has gone away again. No hyperacusis, tinnitus or sore throat. She's starting to act more normal again.
She's getting frustrated. She said in the car she just wants to be normal again....she's trying so hard, she is compliant with meds schedule, is trying to be patient and tries to do things to get her life back.
Had she be correctly diagnosed and treated back in Sept 09 when she first got sick she would not be in this mess right now. The misdiagnoses and incorrect treatments caused her to loose the early treatment window; that gave the pathogens time to disseminate and entrench in her tissues. That's why they are hard to kill now.
If the other moms had not found and alerted me here, I think my child would now be in a w/c in constant pain and having trouble talking.
So, that's why I try to come back here to alert others that NDPH can be a symptom of Lyme Disease and co-infections.
You can't rely on current laboratory tests; they are not reliable for these infections. You need to find a Lyme literate medical doctor who knows how to recongize the disease. Make sure to check wiht other experienced parents/patients to see if the doctor helped them or not. There are some cow pies you must avoid and the only way to do it is by talking with others who have already stepped in it.
The unsettling part is that Lyme Disease is endemic in our region. A physician here not recognizing Lyme Disease is like a physcian in Africa not recognizing malaria. How could they not see it??? So, we have no choice, we must learn how to recognize this disease and how to get the right medical help. The later is the harder of the two to do.
People who are misdiagnosed for many years have a harder time with treatment. It is important to get on it as soon as possilbe.
If you do not have Lyme Disease and/or co-infections, then there was nothing lost in doing the work up and making sure.
The worse thing that can happen is if you do have Lyme Disease and co-infections, but go undiagnosed and untreated for years. It can lead to severe debilitation, suffering, pain over many years, then death.
Please watch the movie "Under Our Skin". there are free video clips from the movie you can Google.
Hugs and Gratitude!!
"MDJ to me is an added phase in my recovery as a 44 year survivor of a TBI. I hope that with what I have lived through in those years, will be able to help all those who are just now going through. It is important to understand that even after 44 yrs, I am continuing to recover and to evolve. I just hope I can help others." (scotty04901)
