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tpotter last won the day on August 18 2014

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  1. Update

    flmom. I found the hypnotist, through google. I found 2 in my area, and reviewed their websites. I got a "good feeling" about the one I chose...can't tell you why..just a "good feeling", and decided to give it a try. So glad I did.
  2. Update

    Hi everyone. I haven't been on here in awhile, and a funny thing happened. I was just thinking today, that I should do a followup (it's been about a year), and then someone just happened to PM me from this group, so I said to myself: "why not do it now?" So, here it is. We are doing extremely well...not 100% as proven by a simultaneous herx between our dog, both my sons, and myself this evening...but the herx is over, we survived (2 of us were raging, but we were all aware, and took some things to calm us down.) My 21 year old is a senior this year in Aerospace Engineering, and my 18 year old is entering as a freshman at a really good university in Video Game Design and Production (he has several years experience doing that at the high school level...much harder to do than what people would think). Lots of 3D animation. But, he loves it. OK...what are we doing. Well, here goes. As other's before me have posted, we are doing homeopathy (and we have also done a few sessions of medical hypnosis for "stuck" behaviors. Made a HUGE diference, and my boys are so happy. We are now completely off abx, and most supplements. No more IVIG, no more PEX, honestly...haven't seen the regular doctor for anything but physicals for almost the past year. I take nothing else, besides the homeopathy. My 18 yo (who got sick when he was 8) still takes his seizure meds (although we went to an epileptologist the other day to talk to her about starting to wean down, as we really believe, as did several neurologists, that it was related to infection. He also still take 1 supplement...5-HTP, because when I stop giving it to him (without his knowledge), he gets very depressed almost instantly. We use a homeopath by skype, and it is way, way less expensive than all the IVIG's, PEX, abx, supplements, etc. that we did prior. We did 1 PEX, and 7 IVIG's, plus multiple years of abx, but although we'd have great results, they were never permanent...the kids would always be good just until the next one, and of course, insurance wouldn't keep doing it. We had to try something else. We are still doing homeopathy, and in fact, we had almost simultaneous herxes this evening...but nothing like it used to be (and my son and I got quite ragey, and his eyes even dilated for awhile.) My 21 year old (I suspect he was congenital...dx with Asperger's, but way better since we found the correlation with infection) did some Ayurveda last year to fix his gut (he had c-diff...don't know how long), but he just couldn't stick to the diet. He started homeopathy this summer. Even my dog is now doing homeopathy (he has seizures, and several other things.) We also decided to try some medical hypnosis, and it has done wonders in just 2 - 3 short sessions with stuck food related OCD, and several other OCD behaviors. I am very, very happy with what happened. So far, only my boys have done that, but I am having some issues with depression (I suspect mostly from PTSD), and I am going to try it myself next month. We were/are battling lyme, bartonella, babesia, erlichiosis, strep, mycoP, and on and on and on. My 21 year old even had his aortic valve replaced last summer...emergency. Although he had a congenital defect, I believe it was worsened to the point of emergency open heart surgery to replace it, because of the bartonella, that he turned out to 100% have. So, for us, the infections have taken a huge toll. But, continuing with something that just wasn't holding didn't make sense. Homeopathy treats the whole body...from the cellular level up. As I said, it has not been easy at times...our homeopath warned us that it could get rough at times, and that she fully expected it to (or she would have had to do something different to make sure that she really got to the issues.) But, for us, I truly feel that we have our lives back. I feel like my 18 year old and I are now at about 90%, and my 21 yo is about 80 - 90%. He even suddenly decided this weekend to completely overhaul his wardrobe (so much more mature...truly looks rugged, and so very handsome, rather than like a 17 yo.) It came out of nowhere...just all his healing. I know that I would never have considered anything as "crazy" as homeopathy several years ago, because I really didn't understand it. But, I would have saved more than enough to have paid for my kids entire 4 years of college, and then some, and we would have been much further along with our healing. But, we are doing great, and I can't recommend homeopathy enough. There are lots of different kinds of homeopathy. And, many others who have decided to try it, have also been quite happy. Ours is very customized, but I know others who do classical, and other types, and they are quite happy, too. So, there is my followup for you.
  3. Flushing Red Cheeks

    DS had for years...still has very occasionally. I would suspect lyme.
  4. Protest/Rally for Justina

    I, too, wish I could attend. I have been to the last 2 (the first for Elizabeth Wray last year, and then the one in January for Justina.) Went up by train. I have a major meeting I have to be at that day, and cannot get out of it. The last one for Justina, on January 10, when we were fearful she would be permanently taken from her parents...only about 20 people showed up. There needs to be hundreds of people there. Right now, child protective services in MA is under fire, because a child who was truly at risk, disappeared, and is presumed dead. The persona who was supposed to be keeping an eye on him wasn't. So, now they are even coming down even harder on Justina and her family. This child has been in DPS custody, and locked on psych wards for the past year. It's disgusting, and will only continue if enough people don't make a huge statement. So, if there's any way you can get there (I got to the last 2 by train...took the train that left at 1 a.m., to arrive by 8 a.m., and was home that night by about 9 or 10 pm), I would really push to get there. DPS would still like to push for permanent custody. This child may be dying. She walked into the hospital, and is now confined to a wheelchair. It's just awful.
  5. Please join us to support the Pelletier family at what could be the last court date to decide whether custody of Justina will be given back to her parents or if custody will be awarded to the state of MA . Remember...this could be any of us. There have now been at least 5 children that this has happened to in the past 18 months. Justina has been locked in psych wards for the past year (1 year this month!!!) All because her parents were following the medical directives of her metabolism specialist from Tufts University. I hope many of you can come. This will be in front of the Court House: 24 New Chardon Street, Boston, MA 02114, on Tuesday, Feb. 4, 2013, 10:00 - 2:00 pm.
  6. t_anna, I know you said that he responds to the ones in crisis first, but if Ophelia22 was in the ER having a severe reaction to the medication he prescribed..... But, in answer to the original question...some of the drs are more difficult than others to get hold of. After 8 years of dealing with this, I refuse to deal with anyone who does not return my calls or emails anymore. I feel I wasted way too much time in the beginning trying to get hold of people who were not going to return my calls. It would be wonderful if an appointment could be made, but, at least back then, our pediatrician had no idea what to do, and it was critical to get hold of the specialist when an emergency came up. We had 2 drs. like this, and for us...it's just not worth the aggrivation.
  7. ktdommer...I know this doesn't answer your question about disability, but I am wondering...given that he is now an adult, and probably has been under treatment for awhile, if maybe an alternative treatment might be considered. Both my children are now adults (18 and 21), and they have been treated for many, many years...my 18 year old had sudden onset at 8 years old, but it still took us 4 years to get dx, and then another year to start treatment. My 21 year old was dx with Asperger's, and then we found out that he had PANS when he was 15. Both have taken tons of things, both have had PEX and multiple IVIG's (that one they always felt tremendously better afterwards, but it wouldn't last, because it turns out we were still dealing with lyme and virtually all co-infections.) Now, they're tired out of all the pills (we were doing upwards of 50 per day.) We are now doing alternative treatments only. My 21 year old works with an Ayurvedic doctor, who has been fixing his gut. He does great now, as long as he doesn't go overboard on all the stuff he shouldn't be eating. Easier said than done, but he has improved a lot. She uses indian spices, herbs and diet, and they are very easy to take (drops in water.) He is now "dabbling" in homeopathy...not going full-on, because there is some major herxing that can happen, and he can't handle that away at school. My 18 year old and I (I turned out to have all the same things) are doing only homeopathy...a form called aperture prescribing. It only requires us to take pillules (little sugar coated pills), and is customized to us. I never really believed it was anything that would work, but it sure has packed a punch for us. We do it by skype, and the price is even quite reasonable. Like I said, we were all very tired of the number of pills and such we were taking, and were ready to try something different. We had tried lots and lots of standard medical stuff, and yes it helped, but just wasn't truly giving us our lives back. And, it was so much to take (and the cost was so much.) I think, particularly for older children, and those who have been getting treated a long time, considering alternative treatment may be something to consider. BTW, we have been dx with CVID, lyme, bartonella, babesia, erlichiosis, mycoP, strep, and I suspect there also may have been mitochondrial disorder. My older son is also dx with Asperger's, but after his second IVIG, his social skills jumped 7 years overnight, so I'm now certain it was all related. He was even thought to possibly have bipolar, but I'm sure now it was all the lyme and co-infections. He also had multiple stomach infections, and even had laparscopic fundoplicationat 6 years old...they never bothered to find out WHY he almost burned a hole in his esophagus...just fixed the problem surgically, but it kept on going, because we didn't know he had all those infections. And, he had open heart surgery to replace his aortic valve this past summer...congenital problem, but I suspect worsened by the bartonealla we didn't know he still had. So, when I say that alternative treatments have helped, I mean they have even helped all those differnt things. And, they may make it easier for your son to be compliant. Good luck with whichever way you choose to go.
  8. ophelia22, I was wondering how things were going for you. I know it's been so hard all these years. Sounds like Dr. N. is working out great for you. I'm really glad. And, I agree with you about Drs having respect to return calls. There's no reason for doctors not to return our calls.
  9. Silver fillings

    Thank you. I'll call on Monday.
  10. I have several silver fillings that my dentist told me awhile back were going bad. I am now having some tooth pain, and he said it may be related to one of them. I know not to use just anyone to do it (he insists that it's just as simple as taking them out, and using a vacuum, but I know that's not so true.) Any suggestions in the Philadelphia area (includes central NJ) would be greatly appreciated. Thanks.
  11. Any idea why? Have you mentioned it to him? This could be several things, including maybe he is sick, and she has a flareup around him? I don't really want to think worse, but it is concerning, especially with a non-verbal child.
  12. Harvey Singers new article

    Are you sure he's not the dr. behind kidnapping all the kids at BCH?
  13. Can PEX help if IVIG didn't?

    Croatianmum, Have you tried homeopathy? It treats at the cellular level. Since we started, we are doing extremely well. My children each had 1 PEX and about 7 IVIGs. They helped, but not held onto the gains. We did treat for lyme and many co-infections (my younger son was dx clinically for lyme, bartonella, babesia and erlichiosis, as well as other infections, and my older son was finally diagnosed by blood test as having bartonella...I used Galaxy Labs 3 draw test after his emergency open heart surgery). Another thing to do is to really treat the gut, because 70% of the immune system is there. My older son uses an Ayurvedic dr, who uses diet, herbs and spices, while my younger son and I are doing homeopathy. Our expenses are way down, and we are doing quite well (my older son...as long as he sticks to the diet :-)
  14. Purgatory.....

    I was going to say the same as mdmom. The low WBC that you mentioned may indicate babesia, as it affects the blood, and both babesia and bartonella can cause the mood changes that you are mentioning. Does he have any stretch marks (typically deep reddish/purple) or indications that there might have been some. They can be, literally anywhere on the body? What about foot pain? Both of the latter or clinical indicators of bartonella.
  15. Warning for those in Boston

    This really has nothing to do with RomneyCare and ObamaCare. Neither one is taking away yours our our ability to pay privately for services. And, this case has nothing to do with who is paying. This has to do with several people at that hospital who have some kind of power issues, and for some crazy reason are not having administration deal with it.