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tpotter

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  1. Like
    tpotter got a reaction from philamom in 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.
  2. Like
    tpotter got a reaction from SSS in 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. Like
    tpotter got a reaction from MomWithOCDSon in 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.
  4. Like
    tpotter got a reaction from Momwithacause in New: Study Debunks Lyme Disease-Autism Link   
    I completely agree with Philamom. Personally, I think this all goes back to lets just be scared of using abx, and prescribe psychotropics instead, AND lets just have 1 in 50 kids diagnosed with an "incurable" disorder that totally disrupts an entire family (incidentally that number was 1 in 144 just 5 years ago). I know multiple children who were diagnosed with Autism who turned out to have PANS (one infection or another plus other biomedical triggers.) I don't put one bit of credibility in this article. My DH was the only one in my family who tested positive for Lyme, but both my children and I also turned out to have it, and responded to the "dreaded" abx therapy.
  5. Like
    tpotter got a reaction from Rachel in Plasmapheresis   
    My kids had infections I did not even know about. PEX and IVIG helped them both...dramatically, but they were in extreme exacerbation, and needed something major to help them immediately. But, that being said, PEX and IVIG are not the cure that we all had hoped for. It is extremely important to keep looking for infections and environmental issues (such as mold, chemicals, etc. for instance), as the immune system is going to continue to be on overdrive if you don't deal with it. Also, this includes finding others in the child's environment who are also ill, as the child is hypersensitive to it. Even after all these years, we still seem to keep finding infection and other things (such as the mold we found and have been dealing with since August.)
     
    Honestly, it's really hard to totally clear all infections. I really think it depends on just how serious the kids are at the time. My kids were in such a bad state that we didn't think twice about doing the PEX. We did think twice about the IVIG, being that it's a human blood product, but we're now not sorry we did either one of them (IVIG was done approximately 8 times total over a 1 1/2 year period.) I honestly don't know what I would do now if I knew then what I know now about all the other infections and environmental triggers. But, at that time, there is no doubt that it was exactly what they needed.
     
    OK...now, for all you new families, I am going to throw a few suggestions out there (based on 5 years of experience treating this.) First, of all, I don't think that PANDAS, in and of itself actually exists (strep only). I think that the paper that came out in Feb, and the new NIMH website that came out in March have it right in saying that it's multiple infections and/or environmental triggers, and that's why they call it PANS. So many of us have eventually found that it was strep, and another infection, such as staph, lyme, mycoP, bartonella, babesia etc. Plus, there could be yeast, mold, chemicals that were sprayed. And, then there's the way the child's immune system reacts to it, and/or clears it. A lot of our kids have turned out to have MTFHR gene mutation which makes it difficult for the child/person to process vitamins/toxins, etc. (LLM knows way more about that than I do.) As it turns out, both my kids have a single gene mutation, and I ended up have a double (homozygous...totally unbeknownst to me, which kind of explains why I have been sick for so many years.) In my family, we have uncovered strep, staph, lyme, bartonella, babesia, erlichiosis, mold, yeast, MTHFR gene mutations, and on and on, and on.
     
    So, all that to explain my answer to the PEX/IVIG question. I know there are going to be a lot of people who get upset with me, but I truly have to say it. Only you and your doctor can really decide if PEX/IVIG is warranted, but you absolutely have to treat for more, evenutally. And, you have to support the immune system, and treat the infections, etc. (there are a lot of ways...currently we are doing abx, homeopathy, supplements, herbs, accupuncture, ART, and chiropractics.) If your child is critical, in my opinion, I would definitely do the PEX or IVIG, because they may truly need that (my younger son especially needed that, because I'm not sure he'd be alive today, if we hadn't done that.) He had also been accutely sick for 4 years before we got a dx, and then it took us nearly 1 more year to get a dx.
     
    In answer to the question about coding. Our children were diagnosed with post-infectious encephalitis for the PEX, and also were found to have specific autoimmune deficiency (in their case to the strep pneumo titers) for the IVIG. We still had to fight, but eventually won.
     
    I agree with LLM, in saying that you would probably be better off spending your money on integrative, LLMD, and/or DAN doc, and only consider IVIG and/or PEX if the child is really critical.
     
    Also, for those of you who are new to this, the Lyme forum discusses way more than just Lyme...it discusses all these other things I have mentioned. I really think it's worth looking at both these forums (PANDAS/PANS, and Lyme).
  6. Like
    tpotter got a reaction from MomWithOCDSon in 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.
  7. Like
    tpotter got a reaction from nicklemama in Harvey Singers new article   
    Are you sure he's not the dr. behind kidnapping all the kids at BCH?
  8. Like
    tpotter got a reaction from peglem in Dr. N. @ NYU is seeing us 2mrro. Tips on what to tell him?   
    If your child has labwork showing CDC positive for lyme or co-infections, and/or there are specific symptoms, such as the bartonella rash, for instance, I would tell him, that Dr._________ diagnosed and started treatment. But, explain that you are at a loss as to why your child is not improving, and that you really need his help in finding out what is truly wrong, and what to do about it. Then, leave it to him to put the puzzle pieces together.
  9. Like
    tpotter got a reaction from MissionMama in Cunningham Panel - Who's used it? (Moleculara Labs)   
    Both my children were part of the clinical trial (we still had to pay for each.) It was very well worth it for us, because we needed more verification. It really depends how much verification you need in order to get treatment. It does tell you more than just whether or not it is strep related. It tests for an autoimmune response, dopamine reactions, and cam kinase levels (which are not only affected by strep, btw.) My boys were extremely high in all areas. Yes, by guys were taking abx at the time. Both ended up also having lyme and bartonella, and one also had erlichiosis and babesia (although the other might have those, too...just not as clearcut.) BTW, interestingly, cam kinase II levels have also been found to be high in people with Alzheimer's. I asked the Alzheimer's Foundation if they are looking into a correlation with infection, and they did tell me that research has been funded. So, I really think there is clinical relevance to so much...not just PANS.
  10. Like
    tpotter got a reaction from rowingmom in 19 yr old loses ability to write for one hour..what do you think?   
    Very much sounds like PANS. Do you have a local doc there who you can get to run tests? PANS definitely can cause changes in handwriting, and sounds very much like my DS who suddenly couldn't speak (started as stuttering, then became difficult to move his mouth, and eventually couldn't speak for about 1 hour.) Both have to do with motor control. I would check for mycoP, strep, CPneumonia, viruses, even suspect lyme, and co-infections. But, yes, definitely get to goo doc, and get this under control immediately. She very possibly was exposed at school. Good luck. Please keep us informed.
  11. Like
    tpotter got a reaction from nicklemama in Alzheimers/PANS Linked?   
    Yes, 3bMom. Vets do first look at infection. In fact, when my DS20 needed emergency open heart surgery this summer, and I knew that bartonella could cause the kind of damage he had to his aortic valve (problem started with congenital defect we didn't know about, though), I called our vet to find out what lab to use to test him for bartonella. Surgeon thought I was out of my mind to insist on testing (I told him I was paying, so what did it matter?) Vet didn't think that was strange at all. And, test was very complete, accurate, and DS came back positive! If docs would just stop denying it, and trying to thwart attempts to check for and treat infection, we'd have a lot less sick people in the world, save a ton of money to be used for other things, and I guess the medical industry might think they would go broke?
  12. Like
    tpotter got a reaction from philamom in Alzheimers/PANS Linked?   
    Yes, 3bMom. Vets do first look at infection. In fact, when my DS20 needed emergency open heart surgery this summer, and I knew that bartonella could cause the kind of damage he had to his aortic valve (problem started with congenital defect we didn't know about, though), I called our vet to find out what lab to use to test him for bartonella. Surgeon thought I was out of my mind to insist on testing (I told him I was paying, so what did it matter?) Vet didn't think that was strange at all. And, test was very complete, accurate, and DS came back positive! If docs would just stop denying it, and trying to thwart attempts to check for and treat infection, we'd have a lot less sick people in the world, save a ton of money to be used for other things, and I guess the medical industry might think they would go broke?
  13. Like
    tpotter got a reaction from rowingmom in Alzheimers/PANS Linked?   
    My FIL died from Alzheimer's and my DH's aunt also just recently died from it. Also, my dad had Parkinson's, and although I can't find any research showing a correlation between infection and Parkinson's (and I called them, too, but they didn't respond), he was EXACTLY like my DS in so many ways. Even had terrible OCD (hoarding), anxiety, and several other symtpoms. His came on suddenly in his late teensBefore he died, I told him that I suspected he had the same thing my children have. Personally, I just think that so many neurological and psychological illnesses are related.
  14. Like
    tpotter got a reaction from croatianmum in pandas can be cured only if it's treated early?   
    My 20 year old is doing great when modifying his diet, and working with an Ayurvedic doctor to repair his gut (70% of the immune system is in the gut.) It is very clear when he doesn't watch his diet, because he gets anxious, angry and confused. He was dx with Asperger's Syndrome when he was in the 7th grade (had symptoms before), and PANDAS at 15, and now we know it is PANS (including lyme and co-infections, + strep, etc.) IVIG helped with 2 very serious OCD issues.) But, the diet now is what is taking care of most everything else. My 17 yo is also doing great, using homeopathy. Herxing like crazy, but doing great. Got sick overnight when he was 8 years old, not diagnosed until 12 years old, and not seriously treated until 13 years old. Both my boys had 1 PEX, and about 7 IVIG treatments, plus years of abx. Yes, these treatments helped, but now, I am finding that the alternative treatments are helping. I don't know whether or not we would be getting this benefit if we had not taken the edge off things with the other treatments, but I do know that now, alternative treatments are helping way more. We are even off abx.
     
    I don't know if this answered your question, but as KimBallot said, there's not enough research. Clearly, getting treatment early is a wonderful thing, but there's no question that older children can and do improve and are functional with treatment. BTW, my 20 year old is an engineering student at a major university. My 17 yo graduates this year, and plans to go to college. Neither was functional 4 years ago.
  15. Like
    tpotter got a reaction from rowingmom in pandas can be cured only if it's treated early?   
    My 20 year old is doing great when modifying his diet, and working with an Ayurvedic doctor to repair his gut (70% of the immune system is in the gut.) It is very clear when he doesn't watch his diet, because he gets anxious, angry and confused. He was dx with Asperger's Syndrome when he was in the 7th grade (had symptoms before), and PANDAS at 15, and now we know it is PANS (including lyme and co-infections, + strep, etc.) IVIG helped with 2 very serious OCD issues.) But, the diet now is what is taking care of most everything else. My 17 yo is also doing great, using homeopathy. Herxing like crazy, but doing great. Got sick overnight when he was 8 years old, not diagnosed until 12 years old, and not seriously treated until 13 years old. Both my boys had 1 PEX, and about 7 IVIG treatments, plus years of abx. Yes, these treatments helped, but now, I am finding that the alternative treatments are helping. I don't know whether or not we would be getting this benefit if we had not taken the edge off things with the other treatments, but I do know that now, alternative treatments are helping way more. We are even off abx.
     
    I don't know if this answered your question, but as KimBallot said, there's not enough research. Clearly, getting treatment early is a wonderful thing, but there's no question that older children can and do improve and are functional with treatment. BTW, my 20 year old is an engineering student at a major university. My 17 yo graduates this year, and plans to go to college. Neither was functional 4 years ago.
  16. Like
    tpotter got a reaction from nicklemama in Cunningham Panel Results Back! What does this mean?   
    With CamK that high, I would suspect he's fighting some kind of infection. I read a report recently (can't remember where, but could probably find it by googling) that implicated CamK levels with alzheimer's. Personally, I believe that indicates that CamK is showing some kind of infection, and I know that Cunningham has mentioned that it can also possibly indicate lyme. If your doctor is not sure of the results, I would ask him to call Moleculara and get clarification. You don't want him guessing what it means.
  17. Like
    tpotter got a reaction from MomWithOCDSon in Anyone know where Dr. T is?   
    I have held off making comments on this thread, but feel I need to. I personally do not have a problem with a doctor charging for a phone consult, especially when in private practice. Dr. Lechtman works at a research facility and, I believe in charge of the IVIG study, so I can understand how he was able to offer free consult services. I don't think anyone here would question any of us wanting to be paid for any type of work we provide.
     
    But, I also think this is getting off topic.
     
    I have been hesitant to get involved in this conversation, because I truly believe that we are all going to have different experiences with different doctors, and that we need to be careful about what we say about any of them, because for the most part they have stuck their necks out for us.
     
    But, that being said, when there is a common problem, such as not returning phone calls, I do believe it is important for people to be aware.
     
    Yes, I have had this problem with several doctors, and wasted way too much crucial time and money and only increasing my own stress by waiting for responses that were never going to come. And, that was when there were no other PANDAS docs. There really is no excuse for that.
     
    But, what I found several years ago, when I had this problem, was that when a question was posed, I would PM whoever asked the question, and let him/her know that I had some personal information to share. I would then note on the thread, that "I PM'd you." to let that person know to watch for it.
     
    I agree with Ophelia22 that people need to, and deserve to know, and that none of us can afford to spend the time or money chasing drs. who may be a problem. But, I also think that there are ways that we can provide that information privately.
  18. Like
    tpotter got a reaction from nicklemama in Anyone know where Dr. T is?   
    I have held off making comments on this thread, but feel I need to. I personally do not have a problem with a doctor charging for a phone consult, especially when in private practice. Dr. Lechtman works at a research facility and, I believe in charge of the IVIG study, so I can understand how he was able to offer free consult services. I don't think anyone here would question any of us wanting to be paid for any type of work we provide.
     
    But, I also think this is getting off topic.
     
    I have been hesitant to get involved in this conversation, because I truly believe that we are all going to have different experiences with different doctors, and that we need to be careful about what we say about any of them, because for the most part they have stuck their necks out for us.
     
    But, that being said, when there is a common problem, such as not returning phone calls, I do believe it is important for people to be aware.
     
    Yes, I have had this problem with several doctors, and wasted way too much crucial time and money and only increasing my own stress by waiting for responses that were never going to come. And, that was when there were no other PANDAS docs. There really is no excuse for that.
     
    But, what I found several years ago, when I had this problem, was that when a question was posed, I would PM whoever asked the question, and let him/her know that I had some personal information to share. I would then note on the thread, that "I PM'd you." to let that person know to watch for it.
     
    I agree with Ophelia22 that people need to, and deserve to know, and that none of us can afford to spend the time or money chasing drs. who may be a problem. But, I also think that there are ways that we can provide that information privately.
  19. Like
    tpotter got a reaction from junkyardjean in Help with some info please   
    Just found this reference when googling...interesting that they say that enterrococcous avium was previously referred to as Group Q Strep!
     
    http://www.ncbi.nlm.nih.gov/pubmed/21667269
  20. Like
    tpotter got a reaction from JuliaFaith in Not over: part 2   
    My DS's strep levels were high, and stayed that way for about 9 years, and lots of tx, including PEX and IVIG. We were all tested, and the dog was also treated. Looks like the levels just came down this year...only thing we did differently was ART. Just wanted to mention that.
  21. Like
    tpotter reacted to peglem in Taking her to NYU. Can't wait. No sleep 3 days. Advice?   
    Get some footage of that stuff that happens when she sleeps, since a doctor is unlikely to witness that and it should help a good neuro to see what she's doing.
  22. Like
    tpotter reacted to JuliaFaith in This is what is happening.   
    We go to a dr. in Dr. Kl's office so I can only speak to what I know. They are called 'Sophia Health Institute' if you want to look them up. We have been going to their office for 2+ yrs. They will only take you as a patient if you are mostly eating just organic food and are open to all types of medicine (allopathic/natureopathic/homeopathic). They use every medicine/treatment that is available and treat aggressively. He does go to Europe every other month, so some of their treatment is unique, but has been used there with success for some time.
     
    He does seem to specialize in chronic illnesses and autism. He started and heads up a neurological clinic in Europe somewhere too. The ART muscle testing he uses and teaches is amazingly accurate (at least with our Dr.). It seemed strange at first but they can tell a lot of what is going on the first visit. Every organ is ART tested for stress along with thyroid/adrenal etc. every visit (along with lyme, co-infections, parasites, worms, bacteria, viruses etc.)
     
    We started treatment with de-worming/anti-parasite meds. and h Pylori testing along with hair testing for heavy metals and vitamin absorbtion. Every supplement/meds that you take (and there are many and expensive) is tested against the patient to see if that is what the patient wants/needs. Detoxing starts from Day 1. You will leave the office with an entire sheet of suggestions (this gets smaller as you get healthier.
     
    Almost our whole family goes to this office now because there is no guessing, only what your body needs at the time.
     
    Have heard that the first visit is usually with 3 drs. so it is quite expensive and lasts at least 1+ hour. Do not know how much. The other drs. in the office apparently do not charge as much but the one we go to is excellent. They all consult and talk to each other about cases etc. once a week. Cost per visit goes down in price after first one. You have to pay the day of visit and they do not deal with insurance at all. I submit claims and get reimbursed for a portion of every visit. The supplements I deduct on tax return for medical costs.
     
    Hope this gives you an idea of what to expect with this office. PM me if you want any add'l info. Best wishes on finding someone to help with healing!
  23. Like
    tpotter got a reaction from JuliaFaith in How is ART form of muscle testing done?   
    JuliaFaith...good explanation.
  24. Like
    tpotter got a reaction from JuliaFaith in Guilt about child missing school   
    Do not feel the least be guilty. My DS (now 15) missed 3 months of school in 7th grade (not that he learned anything in 6th or the first 1/2 of 7th, because he was too stressed and sick!) Both my DS 15 and DS18 have missed a lot of school over the past 4 years (up to 32 days one year for one of them...that's also one of the arguments I used to fight insurance to pay for the IVIG). Both are doing fine in school. Granted, my DS18's grade point average dropped from A's to B's (and he probably missed out on a scholarship opportunity for college next year, because of the GPA...which is a real bummer,) but it is what it is.
     
    You're just dealing with kindergarten. Teach her the ABC's, read a lot to her every day, sing songs, go outside to the park and play, play, play (she'll meet other kids there, too.)
     
    Socially, these kids are so anxious and sick, anyway, that not all of them get much in the way of socializing at school, anyway.
     
    So, don't feel guilty. If you're DH gets on your case, remind him that he doesn't want your DD to end up sick her whole life, and now is the time to really take care of her needs.
  25. Like
    tpotter got a reaction from EAMom in Does my son have PANDAS possibly?   
    Just keep in mind, though, that even good tests like Igenex are prone to false negatives. If you suspect in any way shape or form that this could be Lyme, Bartonella, Babesia, etc, then I would suggest seeing an LLMD (Lyme Literate MD), because they can make clinical dx, even in the absence of a positive blood test. Let us know if you need the name of one in your area, and I'm sure people will share names.
     
    Personally, I wouldn't accept any sudden onset of anything without confirming an underlying cause, such as infection, environmental trigger, metabolic trigger, etc.
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