frikfrak Posted March 14, 2014 Report Share Posted March 14, 2014 Hi, Just a thought, have you tried Minocycline. Its great for brain inflammation. There's a lot of info about it on the web. My DS (23) was on 100 mg. 2x daily and neurologist just upped it to 100mg. 3x day...1 in AM / 2 in PM. He said it could take a couple of months for full effect but said they found they get better results with the 300mg. daily then 200mg. You might want to ask about it. My DS has only neuro symptoms....nothing physical that we can tell...(he doesn't talk really). He used to rub his forehead and I thought that maybe it was because he had a headache and he doesn't do that anymore. Link to comment Share on other sites More sharing options...
Rachel Posted March 14, 2014 Author Report Share Posted March 14, 2014 Hi FrikFrak At one time my son was on a very low dosage of minocycline 100mg 2 times daily. He is getting ready to go see the doctor that prescribed this. I will ask about the higher dosage and see what the doctor says. Thanks for this suggestion. With my son having so many symptoms, I think this is the problem. It may be time to try this again at a higher dosage. Link to comment Share on other sites More sharing options...
3bmom Posted March 15, 2014 Report Share Posted March 15, 2014 My heart feels for your son and you too. How frustrating. I vaguely remember reading that the author (?) Stephen King had burning sensitive skin due to a reaction to beef after contracting Lyme. I would try an elimination diet and filtered water. Link to comment Share on other sites More sharing options...
911RN Posted March 15, 2014 Report Share Posted March 15, 2014 I have read through the sting of posts. Some of you son's headaches sound like migraines and some sounds like a sensory, scalp nerve pain. Maxalt works great for migraines--light sensitivity etc. Non addictive. My older non Pandas suffered from pediatric migraines from age 8-9 to about 13-14. He would have vomiting, light sensitivity and headache. Wanted to be in dark room with cool cloth over head. I would give him Zofran for the vomiting and 1 or 2 doses of Maxalt. He would go to sleep and wake up headache free. Thankfully, he outgrew his migraines with puberty. Has not had one in at least 3 years now. Sensory, scalp nerve pain is very odd symptom....has he ever had shingles? I have come across this before and doctors have prescribed Acyclovir with resolution of symptoms. Post herpetic nerve pain. Neurontin is often used for this type of pain, also. I have even seen people have nerve blocks or permanent nerve cuts to stop this kind of pain. I would like for you to have better diagnosis for your son as I am sure you and he would like also. Has he had a CT or MRi of head? His situation sounds severe. Seems you have been through many MD's without many answers. Pineapple is a natural anti-inflammatory. I eat it daily- it makes a differnence for arthritis joint pain. Tumeric and Curcumin are also great natural anttinflammatories. Cook with curry and tumeric or Dr Weil has a great combo supplement with these two products. Keep us posted. HTH. Link to comment Share on other sites More sharing options...
amyjoy Posted March 15, 2014 Report Share Posted March 15, 2014 I really like Inflamaway by Natura, it works through a number of antiinflammatory pathways. Also, the resveratrol / japanese knotweed, for the neuroinflammation. Link to comment Share on other sites More sharing options...
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