Priscilla

Just to add to the vaccine curiosity, I wonder how many dementia/parkinsons patients have been really good about getting their yearly flu vax ????? I know they are pushed on the elderly population as well, and those senior centers have their vax clinics right on time every year.

If the recommendation is only for high risk disease patients, why is this vaccine mandated for ANY age group in ANY state for school entry???? My dd was given this vaccine WITHOUT being in the high risk group, it was presented to me that it was part of the "normal" schedule and would help with ear infections..... shortly after, ear infections and asthma started. Seems there is misinformation all around. I will not let my dd be a vaccine guinea pig anymore though.

Thanks for these Kim, I am just starting to scratch the surface. Reading Hilary's paper today. I have known in my gut for a long time the vax may have had something to do with it. I appreciate your contributions, its alot to take in, but it makes me feel better about weaning off the abx, I don't feel as dependent... I feel immune balance is more the focus than antigen destruction or especially immune supression. Doing well so far, keeping my fingers crossed and praying

I believe that mouse was a strain that was prone to autoimmunity? Have you ever read anything about the operation of the immune system during pregnancy or the infants immune system shortly after it's born? I'm not going to post a bunch of links, but Hilary Butler's article in the "adjuvant," thread is a good one. Basically, she explains how the TH1 (innate) shuts down during pregnancy so the fetus isn't identified as a "foreign," body and you are operating with the humoral (aquired...think antibodies here) or TH2 system, primarily. The baby and Mom will slowly switch back. Decided to pull some of that info out of the artcle. I'm going to post this much now as I'm just hoping to lay a little ground work so other info. might make more sense regarding vaccinations. I also want to add that I surely don't have this all worked out in regards to PANS or anything else, but I believe that the vaccination program as it stands today IS involved in messed up immune systems, along with environment genetics etc. http://www.whale.to/vaccines/butler.html excerpt Thanks for that Kim. Interesting in that article about the high level measles antibodies in the mom after vax. I was vaccinated in the the hospital for MMR right after my dd was born. I then nursed her for a year....

My intention was not to start a big debate, although I knew it might. I just wanted to share information which I felt helpful and lend support for those who share my opinions. I do have to say that most of us feel PANDAS is under researched. Well, so is the possible vaccine link to our childrens problems, and probably moreso. There is case after case of parents that witnessed their childs decline after a vaccine, can we just discount them? think they are crazy? grasping at straws? NO! that wouldn't be fair, since we have all been there with our ill children. It would be nice if some of the 180 billion dollars made from vaccines could go to research to make sure it is not causing these problems in our children. It seems we can't see the forest for the trees. You can rattle off paper after paper but the fact is 50 yrs ago children didn't have these problems (at least not to this scale)So what has changed??? Environmental toxins, food supply (pesticides, processed foods), EMF, and vaccines. Quite simply put, its probably a combination of all of these.So why aren't we at least doing the research to rule it out???? NONE of us have all the answers, even the "PANDAS experts".I am not saying ALL vax are bad, but we need to look at the additives (which are KNOWN toxins to adults!), what we REALLY need to vax for (dont need a vax for every damn illness), and the schedule of when to give (hep B not necessary in a newborn!) As I previously stated, no immune system is designed to meet all of those illnesses in nature, much less when they are engineered in a laboratory, its just not natural. That doesn't take hours and hours of research and book smarts to figure out. Its common sense really. As I said, "forest for the trees". The answer to our childrens suffering is most likely right in front of our faces. Other countries dont have these issues with Autism on this scale, nor do they have as many vaccines (along with the other factors mentioned previously). This is my opinion and I am entitled to it. DD was first diagnosed with PANDAS, this has become frustrating with a drop in strep ab to normal and still symptoms.. Then lyme/ myco. The vaccine issue tied it all together for me. Luckily, my dd is doing quite well and we have started weaning abx. I dont think Marcella ever claimed to be a PANDAS expert and there was no intention to spread "misinformation". Although it could all be misinformation since no one really has it all figured out. I may have been wrong about her credentials, but that doesn't mean the hours and hours of research she has put in should be discounted. She has suffered with a sick child just as us. I guess her credentials would then put her right here at the level of MOST OF THE MOMS ON HERE with her knowledge; NOT BELOW! A MOM who has taken it upon herself to do the research and consume her LIFE with trying to help others. Just as many on here are considered knowledgable WITHOUT ADVANCED DEGREES, I consider her knowledgable and I have learned from her. I don't think she should be disrespected because her opinions may differ from some of those on here. My conversation about this ends here. Again, this was my opinion not intended to start a debate, but to share and support. I think it helps when a parent that has a child that is doing well shares their thoughts and insights. Thanks for your opinions, but we need to remain respectful and supportive of ALL moms with sick children.

I am suffering from guilt myself. I have been looking at my precious girl feeling so much sorrow for the pain my decisions have caused. I will NEVER be bullied into, or underinformed about any medical decisions I make for her again. I am a RN now, but I wasn't at the time. I know first hand how "human" drs are. You MUST inform yourself and base your healthcare decisions on that, not on a Dr opinion. They are taught wrong. There is a great divide even among us RNs. Many of us wont dare take a vaccine. There is so much overmedicating, overdiagnosing and I see the consequences all the time. I had a gut feeling about the vax when she was getting them. I knew there was something wrong with them just injecting my baby with so many at once. I always wondered how they would tell which one she reacted to if she had a severe reaction. I pulled away from that doc, and went to a talk on vax by one of the Dr Sears. I decided to continue, but I spaced them out more (wish I would have opted out of several of them now). The flu shot is an absolute no no since my dd got influenza (tested pos on rapid test) 24 hrs after it.... coincidence, I think not. Happens WAY too often. Even to many of the health care workers that receive them. I had a wonderful man (and Neuro PA) explain it in the best way. There is no time in nature where a person will be exposed to all of those diseases at the same time... that would overload and confuse ANY immune system. Much less an immature/ rapidly developing immune system of a newborn. Then you add in toxic compounds and its bound to poison those innocent little babies. We must work past the guilt, get our children as well as possible, and educate/promote awareness about it so other children/families don't suffer the same fate.

I have been in contact with the creator of vaxtruth.org. She is a wealth of knowledge as she has experienced it with her own daugther, and she is I believe a neuropyschiatrist and has worked with many patients in a DAN practice. She expressed that the same co factors/nutrients needed to balance GI tract will also support the BBB. Her advice is to get immune system balanced first. I am just getting into this, but It is like a revelation.. it makes more sense than anything thus far. I look at our childrens problems today ranging from ADD to Severe autism as one spectrum, with my "PANDAS" child falling somewhere in the middle. Certainly if you can put all children together that suffer from all these disorders.. and the cause is vaccine injury, you would have some pretty staggering numbers. In my reading enviromental factors can absolutely contribute to the degree of injury, but we should not be poisoning our children from the day they are born. And the sheer defiance of the mainstream medical community to even look deeper into the issue is disgusting. So many children and families are losing their ENTIRE LIVES to this. uggggg sorry I am so upset by this, because it is PREVENTABLE! I will update when I learn more, meanwhile, I really encourage going to the site www.vaxtruth.org and reading thru her articles. Thanks

Well I haven't been here for a while. My dd is almost 10 and doing quite well. We are weaing abx at this time and holding steady. Daily epsom baths have been great!! Anyway,I don't want to ramble but I feel I have been enlightened and want to share. Quick review: DD had "quirks"since about 1 1/2 yrs, on and off. More severe by 6 and some tics started on and off. Shortly after 8th bday we had a gradual, then quick and severe spiral downward. OCD, phobias, defiance, "posessed look", tics, movement disorder, dilated pupil.... you name it, we had it. Diagnosis PANDAS, dramatic improvement with abx but not sustained. On to 4 HD ivig. Still improving but not enough. Then got a pos for lyme and mycoplasma. Added another abx, more improvement. Has been doing great for a while but still on abx. Now weaning down. Vocal tics start whenver abx decreased but has disapppeared with the epsome baths. Suspect yeast detox. Anyway, the leroy girls got me researching again and I came across vaxtruth.org. Many of you may have been there. I first read the article PANDAS caused by vaccine injury, now I am hooked. This makes sooooo much sense. I reviewed my dd medical records and realized first psych symptoms started within months of 1st MMR, but the immune issues started prior with ear infections, fevers, pneumonia, asthma. ALL BEFORE 2! This would be the immunosuppressive effects of the toxic additives. Flu shots given because of asthma..... made her sicker. Anyway, my point is this is the most sense anything has made. It tells why the BBB has been breeched to allow strep antibodies in...or ANY antibodies, bacteria, virus, spirochete... That is why our kids can flare ANY TIME they are sick, it doesn't need to be strep. So now my focus has changed from infinite abx (which has made me cringe to have her on this long) to support healing of the BBB, which also heals the GI tract. I would suggest visiting the site if you havent already. There is so much good information. I am just a bit saddened to know my uniformed decisions contributed to my dd suffering. I am hopeful though, and my focus has shifted, and this is the first time in her life I have felt in my gut and with all my heart I know what is going on with her. Awareness needs to be raised to help prevent other families from suffering what we have suffered.

we started with a pretty sudden and severe onset. Almost every symptom on the PANDAS list, elevated titers, and a history of strep. We started with abx and got drastic improvement but it was short lived. Moved to IVIG (4 total of high dose) and saw a severe exacerbation then started to improve after about 8 weeks out from the first. Tics dropped off to almost nothing but could show up at times. OCD was the worst, and after 4 hd ivig, and several months on High dose augmentin, we were only maintaining. I himmed and hawed about lyme thinking it may just be another desperate attempt at healing. I was then bitten my a tick myself after being no where near the woods. I took it as a sign and researched and took her in for testing. I was completely 50/50 on whether she could have it or not. I was actually quite surprised that we were positve, and I still have trouble believing it sometimes... but in retrospect it actually makes sense. The growing pains and feet tingling, stomach aches.... things she had complained of. After adding zith to the augmentin we saw drastic improvement within the week after a pretty severe herx for a few days. Since our diagnosis last Feb I have been able to pull back and see the bigger picture, I noticed cycles before I was even aware that it typical of LYme. So like I said, I still have trouble believing it sometimes, but the proof is in the pudding I guess. I would say she is 99.9% and I can't think of anyone who is 100% normal. We hope to start weaning abx this month. I also noticed if she gets a cold, she doesn't exacerbate anymore:)

whewwww. Haven't checked in for a while and peeked in to this heated thread. I do not want to get involved in the conflict AT ALL. I just want to make a simple statement. We all have been suffering along with our families and children from WHATEVER is causing this illness. Only you know your child best... but let me ask you this question..... If you were to find the answer to what heals your child today, would you want to share it with the families suffering from this??? If your child made such dramatic progress that you, your child and your family felt like you got your life back, and you were living like a pretty normal family with just a shadow of the worst days in your memory would you want to help those that are in the darkest hours at this moment???? If you knew that many more children and families were going to suffer just like you did or worse, and you had some information that brought your family back to life would you want to help prevent that suffering??? I have to say this for myself and many of the other Lyme moms... this is the case.. It is not judgemental, it is us desperately wanting to share what has helped us be pulled out of the vortex of this illness. My dd was CLASSIC PANDAS, all clinical symptoms AND elevated titers.... did 4 ivig and yr of abx with some success but not enough. Not until Lyme diagnosis.. Now 100% (100%!!!!!!!!) except during flare cycles or herxing, which is so mild compared to our best days a year ago I can hardly count it. I STILL have trouble believing the LYme diagnois, but treatment is working and I can't deny that. So that is the passion that runs through the veins of the lyme forum. Unfortunately it gets misdirected at times. Please understand it is just a desire to shout from the rooftops what has helped our childen! Unfortunately it is not as cut and dry as a simple test, so research and education are NECESSARY. That is also what is trying to be relayed here, not debated.

I actually spoke to the doctor that wrote the article because she has a practice pretty close to me. The article is not out just yet, due in the next couple of weeks. It will be online with open access (do not have to pay) I am curious to see it, she said it ended up being about 15 pages and her goal was to write something for parents to hand to their doctors when they are trying to get them to listen. I asked her to email me when it comes out. I will update as soon as I know anything.

Highly likely it is a herx. I had tried my dd on zith at the start of our journey with PANDAS and thougth it was just making her worse so I took her off after 2 weeks. Almost a year later we found it was Lyme and added zith back in, when we did she was horrible within 24 hours and it lasted a week, then we started to see improvement.

very interesting. makes me wonder about giving pregnant women the flu shot?????????????? no more vaccines for me thanks.

I would LOVE to see Dr. J. However, He is way to far for family of 5 to travel to get better multiple times a year. But the best LLMD is always worth it in the end. I personally went to the only 2 that are within a 2 state radius for me and I live in texas . There is no one here. But I wanted to see both to decide who was the best to treat my kids. They have already been through so much. I did not want to take them to some wierdo place in the middle of No where America. I was happy I did. And zeroed in on the one that works best for our family. I chose not to go the route of taking 20 different pills a day for my kids. We try to keep things simple antibiotics, probiotics, eat healthy and clean. So far it has worked. amen sister- we are doing the same- abx, kefir, organic healthy diet, and plenty of exercise......doing well with that, can't wait to start weaning abx though

Thank you LLM! My husband and I are realizing we actually almost need family therapy to figure out how to parent normally again... it is so very very different to have the same kid no longer pushing back, resisting, crying, screaming ... hearing "ok Dad" and "thanks, you are the best Mom in the world" is jaw-dropping. Almost like this child has been hiding in a box, and now has been unwrapped! I was crying when I read this, we are parallel right now. Our OCD and tics were different, but severe none the less. Meltdowns and defiance have almost ceased, and its like a beautiful angel has blossomed from the darkness, and she is so close to GOD after all she has been through. I am so happy for you, and us, and so hopeful for all the others still enduring this....

Heat really gets my dd agitated. She has gradually increased exercising and seems to be doing really well with it. It seems like just the heat can really agitate her even without exercise. Maybe you could have him try to gradually increase his exercise tolerance in cooler places (like an air condiditioned gym, or if you have room at home get a treadmill in a cool area) and have him exercise daily to build up to being able to tolerate PE. At his age he may adapt quickly. I have read how several of the lyme docs recommend to start slow with the aerobic actvity and build up. My dd started with swimming and was running 3 miles on the dry sand on the beach with JR lifeguards in just a couple of months.

Everyone should know Lyme is not confined to any specific areas. It has be found in ALL 50 states of the US along with other countries. That would make it safe to say that the other tick borne illnesses are probably under reported as well. I live in So Cal in a metropolis and I found a tick on me MORE THAN ONCE! Other vectors are also thought to carry it (fleas, mosquitos..) I thought the same way, but the more I researched before testing, the more I thought I better test. I went in totally on the fence on if she could have it. Most doctors don't even know that much about lyme and TBI. It would be up to you to do the research and find a dr that will be able to help.

I remember being where you are just a few months ago. I couldn't believe it could be lyme, I even still question it, but all I know is my dd is soooooooo much better. 100% with mild cyclic flares. We did 4 hd ivig and didn't get the results we are now getting. I have found that my LLMD is the ONLY dr that doesn't seem to have an alterior motive. In fact, LLMD's put themselves on the line for the sake of helping patients they believe are very sick and can be healed. Doctors don't need to do that, there are alot more lucrative areas of medicine to be in. From the first visit, he told me he was gonna help us, and he had never heard of PANDAS, but is now contacting PANDAS doctors trying to figure out the link. He has actually had quite a few PANDAS cases referred to him. Our CD 57 counts are increasing and it correlates with her clinical improvement. I haven't seen this child in so many years! I just want to give you hope. When I first got the diagnosis I didn't know whether to be happy or sad. Well here I stand today ELATED that I got that diagnosis and my daughter is back and better than I had even hoped for. It is a long road, and we are still treating.. I hope to start decreasing abx within the next few months.. Prayers to you.

glad to hear this too. I was so focused on PANDAS for so long and didn't really get any better until we discovered and treated for lyme. Even went through 4 hd ivig. I think the correlation between PANDAS and Lyme will be shocking when research gets moving.

AWESOME- that is one of the reasons I stopped all supplements and just went to abx and yogurt with a healthy diet. I think too many things given to our kids (especially at once) confuses their system and actually impedes progress. Less is more for us and my dd is doing great too!

for us, the ocd was very intense, and the last thing to go.... it still rears its head in a flare, but it is so mild and it passes quickly. IT DOES TAKE TIME AND PATIENCE with the medication. We went back on abx in Dec 2010, then added a 2nd start of FEB 2011. Just in the last 6-8 weeks have we noticed the OCD disappear, so that was about 5 steady mos of 2 abx, and may have been longer or not disappeared at all if we were still only on 1. We do not have bartonella, lyme only, but the key is to be consistent with the meds and patient. There are ups and downs even when you are consistent. Keep in mind the psych meds do not CURE anything, and I think you had said many of them didn't even work. My thought is they are just another variable and another strain on your dd's already taxed system. Lyme itself creates flares of symptoms in cycles. When the cycles were too close together I couldn't notice the pattern. Now that she is healing I notice the flares and sometimes there are closer together but they get milder and milder.

Bumping this up. My LLMD has told me today he has contacted him and they will be doing a conference call soon due to the fact that my LLMD has suddenly taken on several PANDAS patients. He also believes there is a strong connection between Lyme and PANDAS due to the cases he has seen. I hope something comes of this!!!

Our dd is on a different abx regimen but her OCD was VERY severe. So bad we were applying for an intensvive program in January, we had already been on abx since april 2010. We added another abx in Jan/Feb but we are JUST now (over last 4 weeks) seeing the greatest improvement in OCD. I have also just posted a topic on the flare patterns which may be helpful to you. I have found patience, and faith to be absolutely necessary in her healing. In our darkest depths I "TRULY' learned to live one day/moment at a time. I feel it was a lesson learned. It sometimes took us up to 6 wks to see the abx doing any good when we would try to stop them.

I just wanted to post in case it could help someone. I notice when reading through posts that ALOT of moms say an abx works for a while, then stops, then they change, then the other works, then stops.... alot sporadic herxing/side effects. I just want to share this thought. I was giving my dd ALOT of supplements, anti-yeast, diets and abx.... I was so overwhelmed and it was hard to see what made any difference. I cut everything out, even abx for 2 mos in OCT 2010. needless to say, she slipped. I restarted ONLY 1 abx in Dec 2010- NOTHING ELSE! we saw her start to improve again, but still bad. Then Lyme diagnosis end of Jan 2011. We added zith and even more improvement within a week. I don't give her ANYTHING ELSE but her abx and have her regularly eat yogurt. No gut issues so far, thank you JESUS. So here is my point: I have been able to carefully watch her patterns on just these meds, it took a couple months but I did notice a pattern. I would think she was doing good, then she would seem to be slipping and I would panic. After a while, she would seem to be improving again, then backwards again. I think she was so sick that it was very difficult to tell the good from the bad, and on top of that- my panic would send me into despair thinking we would never get better (this is where it is so tempting to try something else, of course we want to do ANYTHING that has even a slight chance of helping right?) Well now I feel we are in a place where I can see this clearer. My dd is so good, I can not even tell she is sick most of the time (and if you have seen my previous posts, we have been in the darkest places) This allows me to see that every 4-6 weeks she flares up. This past flare was some hypersensitvity... but milder and milder and longer in between flares now. I can still tell what is a behaviour from the illness vs a normal kid behaviour (like a mama can distinguish her babies cries). So I just want to put it out there that maybe it is a flare you see, which usually indicated the meds ARE working. It seems now in retrospect that the flares were longer and more severe and that is what made it hard to see the pattern. But as we are patient, we have surely seen them spread out and become milder. Hang in there ladies and thanks for listening- hope it helps someone!

So glad to hear you have improvement, I remember your frantic posts. We are also seeing great progress... 100% most of the time. We discovered it was lyme. I think I remember you being along the east coast. I don't want to seem pushy, but I am also a RN, and what I have learned about Lyme, and the results I have seen in my daughter in last 6 mos since getting a pos lyme test make me passionate about promoting awareness about lyme. I was sooooo skeptical and still have a hard time believing it at times, but like I said, the improvement is dramatic. I pretty much have my girl back, and actually she is even better than before! I see now I haven't truly had her since she was about 3 yrs old, and now she is 9. We treated for PANDAS for almost a year, even doing 4 hd ivig. We saw some serious regression with a little improvement until the lyme dx. I have been brought to tears thanking Jesus for where we are today. This time last year I was also being attacked daily, in the ER, dd was suicidal and homicidal, possesion like rages daily. I was constantly covered in scratches over my face, arms and chest- even have a few scars to remind me. She now showers me with love, kisses, kindness. She has a very mild flare every 4-6 weeks which progressively becomes milder. If you haven't already, please research lyme and read cure unknown. I wish you continue on your road to healing.