pr40

another thing to consider: are you giving too much of something? my kids go hyper with too much B vitamins, esp b12.

well, yes, because lyme is so hard to treat! but there is that other thing, what is the infection behind pandas? did you test strep, myco, etc? you want to know this because you want to know, first, if there is an ongoing source of infection. then, second, because long term effects of these infections are a bit different.

one thing occurred to me, if you haven't tested for other infections like myco, you may want to just to rule them out. also, have you been on long term abx for RA already?

my wife had generally similar Igenex results and similar symptoms to yours with some joint pain but no RA. I would say you have autoimmune issues and should focus on those, not necessarily lyme. my wife is on a gluten-, dairy-, corn-, and sugar-free diet and still has the symptoms which are now managable. we started the diet 8 months ago so are relatively new to it.

my wife had strep B as well but birth went so fast that she did not have time for ABX. There were no infections for our ds.

why are you not focusing your question on the infections, strep and uterine? where there is inefection, there is infammation. and there is some evidence that inflammation en utero is related to psychiatric issues.

I am interested in other answers to question but also want to try and answer it myself: Do we really ever boost immune system? or do we do something like lower inflamation which then leaves resources for the immune system helping it work better? so, any anti-infammatory would fit the bill. and they can range from ibuprofen to olive leaf, cq10, improving methylation, and so on.

more tough love: it's to be or no to be. someone here on the forum suggested taking your kid to the psychatric clinic, the worse the better, just to see where he may end up. the point is to bring him to reason somehow. Also, i am not sure you are doing him any favors by having junk food around. throw all the food you don't want him to eat out and pray for the best. how long can he hold off? from your message it seems not too long. You got to impose your will on him if there is to be any hope of improvement

i thought of sleep too. i am not sure she would be capable of a sleep study -- she gets very nervous and anxious before bed-time. we'll see. thanks!

we have a filtration system as a part of our pipes. we use one of the aqua pure filters. they seem to do a good enough job.

my dd9 is tired again and I am looking for an idea what do to. she is on abx and many supplements, some anti-infammatory, some vitamins, mainly bs and d. she is also on iron and magnisium and probiotics. she sleeps well, i mean, normal hours. but she also complains of being tired. it started late September, left for a while, then came back and is with us every day. suggestions, please.

we see symptoms of auto-immune conditions, behavioral issues, and compulsions, esp on mother's side.

here to second everything said. make sure that there are no other infections and find someone willing to prescribe profilactic abx and different ones as well -- i think that is all I can add.

have you tried an anti-infamatory like ibuprofen before bed time?

the same here with dd10. i am not sure if anything can be done. therapy perhaps. we hope to see a psychiatrist in a near future. good that motrin helps. we use it, too, and it helps too. Also, you may want to try CALM, a megnesium supplement. it also works for our kids. I think, this is something she will have to learn to live with.

I actually made a mistake. Study is no longer accepting new patients. I can't erase the post. I am very sorry. http://clinicaltrials.gov/ct2/show/NCT01281969

there is only one q. if she belives in PANDAS and is willing to treat. It doesn't seem to matter if it is neuro or immunologist. But, the answer may also depend on the issues your child has. If you think they are neurological such as uncontrolled movement or RLS, then neurolosits may be better. If your kid has weak immune system, alergies, etc, then immunologist would be more suitable.

i may not be understanding this well, one bend does not indicate lyme. I would look elsewhere as well. try to indetify the cause of infection and may want to approach treatment as an autoimmune conditon while you search for the cause.

you may want to change to another pediatrician. what yours is doing is refusing to follow an advice by the specialist. you can say that NIH recommends the same treatment that K suggested. Also, you can ask K to send this report to your pedi and make it a part of your kid's file. THat way pedi has his covered. If he is not willing to do it even then, tell him/her you'll move eslewhere.

my first guess is zytro and I did stop giving it to her last night. it was the first evening in a while without pain. we'll see.

you made tears appear in my eyes and I am that other gender that does not cry

long time ago i did research on encephalitis. my memory is that it can be a clinical diagnosis, i.e. one that depends on the interpretation of a particular dr. who would base her judgment on symptoms. so, one way to get IVIG covered is to find dr who would diagnose encephalitis.

I used Glutagenics while recovering when I was originally diagnosed with celiac. Tastes awful. I believe it helped me and I saw no side effects. DD9 sometimes uses it when she has stomach problems. We did not see any side effects. I also used l-glutamine pill at times and saw no immediate positive or negative effects. That is, actually, a problem, how can you tell if the lining is doing better or not? BUT there is another more important point, nothing can replace gluten-free and casein-free diet. doing less of either does not help, since the stomach lining is already damaged. that lining needs time to heal. and that is the reason why all treatments of auto-immune issues, all advice regarding methylation start with "take care of your gut." It is not easy changing diet and when you do it, there will be no immediate pay-off. I'd be happy to take you through the steps. First two weeks are , the next two are a bit better, and then, in three months time, you forget that you ever craved wheat or cheese or chocholate. You do need to be willing and able to cook at home.

elvis this article might be about the same issues that you might have. i got it from MTHFR support group -- <carla@mthfrsupport.com> COMT (Catechol-O-methyltransferase ) Many of you want to know what COMT is and how it can impact MTHFR (methylenetetrahydrofolate reductase). From my own personal experience I will explain how it has impacted my life and what I have learned from many of the practitioners at MTHFR Support. I will also give you a simplified explanation of how it works. COMT V158M and COMT H62H are related to dopamine, epinephrine, norepinephrine and estrogen dominance. When these COMT’s are expressing we will have trouble breaking down the catecholamines dopamine, epinephrine and norepinephrine and the hormone estrogen. COMT is related to anxiety attacks, panic disorder, schizophrenia, PTSD and hormone related cancers. So how will this affect people who are treating MTHFR with 5-methyltetrahydrofolate? When COMT is expressing and we take high doses of methyl donors, we can increase anxiety. So many of us need lower doses of 5-methyltetrahydrofolate and we try to get most of our folate out of leafy greens, beans, eggs and berries. Now remember just because you have COMT does not mean that it is expressing. This is very important to get a healthcare professional who understands nutrigenomics and methylation to determine if COMT is expressing. When treating MTRR, TCN and FUT2 with B-12 and COMT is expressing, methylcobalamin may not be the best choice. I had the pleasure of attending one of Dr. Richard Deth’s presentations at Autism One this year and learned that it is normal for COMT’s to be methyl B-12 deficient. There are other forms of B-12 that practitioners are using to treat people who have COMT. Some use hydroxy B-12, others use adenosylcobalamin and some use a combination. Just because you have COMT please do not get off of you methylcobalamin without first talking to your practitioner. I experienced the expression of COMT back in 1994 when I took an NSAID (non-steroidal anti-inflammatory) for PMS. I went into anaphylactic shock and had to be resuscitated. I was given epinephrine, Benadryl and prednisone. Six hours after lying in the ER, the doctors felt it was time to release me. I complained about rapid heartbeat and nervousness. I was told this was normal after getting epinephrine, to go home and that it would wear off in a few days. A few weeks passed and I did not get better. I actually got worse. My heart would be racing so rapidly that when someone was speaking to me, all I could see was their mouth moving and all I was hearing was my heartbeat in my ears. My eyes would roll in the back of my head, I would foam at the mouth and fall to the floor with what looked like a seizure. After multiple ER and doctor visits I was diagnosed with PTSD and one of the worse cases of panic disorder they had ever seen. I explained to them that this did not happen until after I was given the epinephrine. They did not want to hear this. I was put on an antidepressant and benzodiazepines that took me nearly 2 years to come off of. Sadly if doctors knew that someone homozygous COMT V158M and H62H cannot break down catecholamine’s well at all, they would have taken a different approach. Maybe some IV NAD. Many people have asked me if I was to go into anaphylactic shock again, would I use epinephrine to save my life? I always say yes. There are ways to break it down naturally with niacin rich foods, NAD therapy and also avoiding caffeinated and dopamine rich foods. COMT does express in me so I test my neurotransmitters frequently. I avoid black tea, green tea, white tea, coffee and dopamine rich foods. I eat niacin rich foods and I also eat chicken and turkey which contain tryptophan and converts into niacin in the liver to help take the edge off. I have also found that living a simple life and surrounding myself with nature helps. Meditation is something I do daily. Sitting in an empty room and just clearing my mind helps so much. Always remember one man’s food can be another man’s poison.

if I understand things, it is hard to explain even harder to prove if lipoic acid did or did not cause tics. but, if you stop giving it, you might see changes and you will then know. to test, ds can start lipoic acid again. but there is a different point I want to make. we saw a lot of raspberries, a lot of mouth produced tics which suddenly disappeared as ds got better. on the other hand, if mouth tics were the only thing our ds had and was otherwise ok, I would celebrate. I don't expect for either of our kids to be "normal." I don't think wife and I are all that normal, either. I hope for a good quality of life.