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Everything posted by Priscilla

  1. 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.
  2. 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.
  3. 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
  4. 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. Deci
  5. 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 18
  6. 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 h
  7. 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 f
  8. 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
  9. 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
  10. 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, a
  11. 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.
  12. 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.
  13. very interesting. makes me wonder about giving pregnant women the flu shot?????????????? no more vaccines for me thanks.
  14. 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 ta
  15. 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
  16. 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 sw
  17. 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 woul
  18. 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 g
  19. 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.
  20. 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!
  21. 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 i
  22. 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!!!
  23. 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 do
  24. 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. T
  25. 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
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