Guest guest Posted March 4, 2002 Report Share Posted March 4, 2002 Welcome Kirsty, Craig and ! Guessing from your email address, you are in Austraila? Thanks for joining IMDSA and I hope we can learn more about you and your family. Again, welcome. Husband to Jaymie, and stepdad to (11.5 MDS), Jordan (9) & Sydney (6.5). IMDSA Nat. VP __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2002 Report Share Posted March 4, 2002 Welcome to our Group! If you ever have any questions or concerns, please don't hesitate to ask! Kristy Colvin President, IMDSA --- Craig wrote: > Hi My name is Kirsty husband Craig on is 5 and > who is MDS is 3. We live in Adelaide. > is going along well, very active little boy > who enjoys life to the max. > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2002 Report Share Posted March 5, 2002 Hello Kirsty, Craig and family! So happy to have you join the group! My name is Barbara Martz and my husband is Bob. We have two children, who is 6 1/2 years old, very dear, and a challenging and bright boy. Then we have our sweet baby Jonas who is 16 months old and has MDS with 30 % effected cells. We live in Western Pennsylvania, USA. It is freezing here today! Only 16 degrees Fahrenheit! We long for the loveliness of Spring! We receive many wonderful services through the "Early Intervention" program in our home state and Jonas is thriving under the watchful eye of an excellent Physical therapist and an oral motor therapist who each come to our home once a month to help us to stay on track with what we should be working on for him. He is standing up to everything and could stand on his own if he would pluck up the nerve. He has been caught doing it several times, but as soon as he realizes he is standing all by himself, he sits right down! Though he was 2 months early when born, he is catching up very well indeed. He has two teeth on the top and two on the bottom and as I type this he is grinding them together here in the dining room and it is worse than fingernails on a chalkboard. I am not too sure why he has decide to do that. I will be looking forward to hearing about and brother on, and about your family! Where is Adelaide?, I am sorry but Geography is not my forte. Have you known since birth that had MDS or how did you discover it? Maybe you posted your story on the www.mosaicdownsyndrome.com site. If so, let us know and we can read all about it. Jonas' rather remarkable story is there under the surname Martz. You may enjoy reading what a little miracle he is. He was born with 2 holes in his heart, and thank the Lord, one has closed and we are keeping a watch on the second one along with a cardiologist. Have a great day, new friends! Blessings to your Family! Barb Martz Mom to Jonas 16 months (MDS) & 6 years Intro Hi My name is Kirsty husband Craig on is 5 and who is MDS is 3. We live in Adelaide. is going along well, very active little boy who enjoys life to the max. Won't you please consider adding your personal story on the MDS website today? http://www.mosaicdownsyndrome.com*************************************************MDS MESSAGE BOARD - http://www.mosaicdownsyndrome.com/discus************************************************* Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2002 Report Share Posted March 5, 2002 Hi Barbara, Thanks for the email. Wiilliam is going really well. He will hopefully start pre school last term this year. We live in Adelaide.South Australia. Today it is going to be about 82 degrees Fahrenheit. Our low temperature in Winter are about 50 degrees Fahrenheit. Don't know if I could handle your weather in winter.Jonas sounds like he is doing really well. Are you going to the MDS conference next year. We are trying. Talk to you soon Kirsty Re: Intro Hello Kirsty, Craig and family! So happy to have you join the group! My name is Barbara Martz and my husband is Bob. We have two children, who is 6 1/2 years old, very dear, and a challenging and bright boy. Then we have our sweet baby Jonas who is 16 months old and has MDS with 30 % effected cells. We live in Western Pennsylvania, USA. It is freezing here today! Only 16 degrees Fahrenheit! We long for the loveliness of Spring! We receive many wonderful services through the "Early Intervention" program in our home state and Jonas is thriving under the watchful eye of an excellent Physical therapist and an oral motor therapist who each come to our home once a month to help us to stay on track with what we should be working on for him. He is standing up to everything and could stand on his own if he would pluck up the nerve. He has been caught doing it several times, b Won't you please consider adding your personal story on the MDS website today? http://www.mosaicdownsyndrome.com*************************************************MDS MESSAGE BOARD - http://www.mosaicdownsyndrome.com/discus************************************************* Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2002 Report Share Posted March 7, 2002 Hi Sussan, Wiiliam has just turned 3 last week. We live in Adelaide. We found out about MDS 10 week after he was born. Big shock. will be starting pre school last term this year. We do kindergym and have done kindermusik. He has beewn going to early intervention but he is much more advanced our Dr said he should be in higher class but they disagree due to social aspect. DS are trying to put us off for 12 months for pre school but he is ready now. It is hard when MDS children are a minority. You will know when it is right and don't let anyone tell you otherwise. Thanks for the reply. Look forward to talking to you soon. Regards Kirsty Intro Hi there Kirsty and Family, Welcome and nice to meet you. My name is Sussan my daughter is Courteney will be turning 2 in may. We live far apart but not that far (lol) as I am from sydney AUS so when will be turning 4 and if you don't mind me asking did you know about MDS when he was born or not until after. I found out with Courty when she was born they noticed something but wasn't sure ???? Is going to attend normal Pre school or did he go to early intervention first. As I am not too sure where to send Courty when the time is wright. Hope to hear from you soon.. rosepetal@... SUSSANWon't you please consider adding your personal story on the MDS website today? http://www.mosaicdownsyndrome.com*************************************************MDS MESSAGE BOARD - http://www.mosaicdownsyndrome.com/discus************************************************* Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2008 Report Share Posted October 6, 2008 Hi all, I'm not really a newbie to this adventure but to this group. I've had Lyme+ since 1990 (diag in 2000, now at ~85%) and my husband contracted Lyme and babesiosis from me in 1996 (diag in 2000, now at ~90%). I treated while pregnant with our daughter in 2004 and tested blood and placenta (neg), did not breastfeed. We did not vaccinate at all. She began with sensory integration problems and language delay and then PDD-NOS diagnosis at 2. Severe fever with swollen face around this time as well with no answers from doctors. Discovered Lyme connection at about the same time (thank you LIA for your web site!!! Hi Tami! ) Saw Dr. J and we started treating her a little more than a year ago. Using all typical treatments/therapies including GFCF diet (she was already dairy/wheat free from baby she was so obviously sick from them). Diet and then antibiotic treatment led to surges in language and decrease in behaviors and hyperactivity/impulsivity/meltdowns. She had an allergic reaction to augmentin when we switch from zith (hubby is allergic) but she had reacted incredibly well to it. Now still on zith. Increased dose to treating dose for her height and weight with great initial results but still at times things don't seem too great. I know from personal experience that treatment for Lyme is two steps forward and one step back (maybe more) but it's so hard when it's your daughter. I've also started using homeopathy with her and that was amazing recently when I seem to have figured out THE one she needs right now (reminds me I have to order a higher dilution online). It is very promising. I'm here partly for support because there are, of course, NO parents in any circle remotely around me who " get it " and my parents and in laws are wary of our unconventional treatments and lack of vaccines (sorry not happening even if she becomes cured but that's another story). I would like to know what other treatments I should consider for Em. I have recently tested high in mercury and lead but chelation made me sick and it's controversial... don't know if I'd do it with my daughter (I'm the guinea pig heehee). I know that homeopathy can help the body remove heavy metals so I'm going to look there first. We have not brought her to a DAN doctor because of the incredible expense of that plus Dr. J visits. Thanks, Jen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2008 Report Share Posted October 6, 2008 Hi Jen: I am not knowledgeable in homeopathy, but I use Nutramedix herbs which are energized in some kind of homepathic fashion. On the LIA website, there is a link to treatments, natural and antiobiotics, which you can look into to get some more treatment ideas. My family is living as normals, but everyone is still dependent upon diets and pathogen killers. There is also a couple of great power point presentation links under " mor information " on the LIA website that talk about all kinds of treatment ideas. Yes, the money is an issue. Some things are cheap like grapefruit seed extract. We started that about two weeks ago, and I really like it. We also use Samento and Cumanda, and have used Resveratrol, all with great results. But, as much as our symptoms are under control, they come back if we don't take our pathogen killers, so its still a struggle to rid them all the way. Heidi N > > Hi all, > > I'm not really a newbie to this adventure but to this group. I've had > Lyme+ since 1990 (diag in 2000, now at ~85%) and my husband contracted > Lyme and babesiosis from me in 1996 (diag in 2000, now at ~90%). I > treated while pregnant with our daughter in 2004 and tested blood and > placenta (neg), did not breastfeed. We did not vaccinate at all. > > She began with sensory integration problems and language delay and then > PDD-NOS diagnosis at 2. Severe fever with swollen face around this time > as well with no answers from doctors. Discovered Lyme connection at > about the same time (thank you LIA for your web site!!! Hi Tami! ) Saw > Dr. J and we started treating her a little more than a year ago. Using > all typical treatments/therapies including GFCF diet (she was already > dairy/wheat free from baby she was so obviously sick from them). Diet > and then antibiotic treatment led to surges in language and decrease in > behaviors and hyperactivity/impulsivity/meltdowns. > > She had an allergic reaction to augmentin when we switch from zith > (hubby is allergic) but she had reacted incredibly well to it. Now still > on zith. Increased dose to treating dose for her height and weight with > great initial results but still at times things don't seem too great. I > know from personal experience that treatment for Lyme is two steps > forward and one step back (maybe more) but it's so hard when it's your > daughter. > > I've also started using homeopathy with her and that was amazing > recently when I seem to have figured out THE one she needs right now > (reminds me I have to order a higher dilution online). It is very > promising. > > I'm here partly for support because there are, of course, NO parents in > any circle remotely around me who " get it " and my parents and in laws > are wary of our unconventional treatments and lack of vaccines (sorry > not happening even if she becomes cured but that's another story). I > would like to know what other treatments I should consider for Em. I > have recently tested high in mercury and lead but chelation made me sick > and it's controversial... don't know if I'd do it with my daughter (I'm > the guinea pig heehee). I know that homeopathy can help the body remove > heavy metals so I'm going to look there first. We have not brought her > to a DAN doctor because of the incredible expense of that plus Dr. J visits. > > Thanks, > Jen > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2008 Report Share Posted October 6, 2008 Heidi, how often do your kids take GSE and how many drops per day? I was giving 6-12 drops a day but thought I read it was too strong to give it daily. Thank you for all of your insight and great information on so many fronts! Darci -----Original Message-----From: BorreliaMultipleInfectionsAndAutism [mailto:BorreliaMultipleInfectionsAndAutism ] On Behalf Of ambitionn01Sent: Monday, October 06, 2008 8:15 PMTo: BorreliaMultipleInfectionsAndAutism Subject: Re: Intro Hi Jen:I am not knowledgeable in homeopathy, but I use Nutramedix herbs which are energized in some kind of homepathic fashion. On the LIA website, there is a link to treatments, natural and antiobiotics, which you can look into to get some more treatment ideas. My family is living as normals, but everyone is still dependent upon diets and pathogen killers. There is also a couple of great power point presentation links under "mor information" on the LIA website that talk about all kinds of treatment ideas. Yes, the money is an issue. Some things are cheap like grapefruit seed extract. We started that about two weeks ago, and I really like it. We also use Samento and Cumanda, and have used Resveratrol, all with great results. But, as much as our symptoms are under control, they come back if we don't take our pathogen killers, so its still a struggle to rid them all the way.Heidi N>> Hi all,> > I'm not really a newbie to this adventure but to this group. I've had > Lyme+ since 1990 (diag in 2000, now at ~85%) and my husband contracted > Lyme and babesiosis from me in 1996 (diag in 2000, now at ~90%). I > treated while pregnant with our daughter in 2004 and tested blood and > placenta (neg), did not breastfeed. We did not vaccinate at all.> > She began with sensory integration problems and language delay and then > PDD-NOS diagnosis at 2. Severe fever with swollen face around this time > as well with no answers from doctors. Discovered Lyme connection at > about the same time (thank you LIA for your web site!!! Hi Tami! ) Saw > Dr. J and we started treating her a little more than a year ago. Using > all typical treatments/therapies including GFCF diet (she was already > dairy/wheat free from baby she was so obviously sick from them). Diet > and then antibiotic treatment led to surges in language and decrease in > behaviors and hyperactivity/impulsivity/meltdowns.> > She had an allergic reaction to augmentin when we switch from zith > (hubby is allergic) but she had reacted incredibly well to it. Now still > on zith. Increased dose to treating dose for her height and weight with > great initial results but still at times things don't seem too great. I > know from personal experience that treatment for Lyme is two steps > forward and one step back (maybe more) but it's so hard when it's your > daughter.> > I've also started using homeopathy with her and that was amazing > recently when I seem to have figured out THE one she needs right now > (reminds me I have to order a higher dilution online). It is very > promising.> > I'm here partly for support because there are, of course, NO parents in > any circle remotely around me who "get it" and my parents and in laws > are wary of our unconventional treatments and lack of vaccines (sorry > not happening even if she becomes cured but that's another story). I > would like to know what other treatments I should consider for Em. I > have recently tested high in mercury and lead but chelation made me sick > and it's controversial... don't know if I'd do it with my daughter (I'm > the guinea pig heehee). I know that homeopathy can help the body remove > heavy metals so I'm going to look there first. We have not brought her > to a DAN doctor because of the incredible expense of that plus Dr. J visits.> > Thanks,> Jen > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2008 Report Share Posted October 7, 2008 Darci: We are doing the capsules right now. I am taking 3 twice a day, and everyone else gets lower amounts, based on weight. I feel a slight herx with this amount, so this is how I detect what is the right amount. I will likely stay at this amount for awhile, and add in more pathogen killers. All of our noses are running from it. I feel like its killing something in our sinuses. We usually have full sinuses, even though our noses don't run. Its liked just clogged, but not really affecting our breathing. So hopefully, this stuff is ridding that. I read its considered safe. No one is having any bad side effects. A minor headache, lasting a few minutes here and there, and upset stomach, lasting a few minutes here and there, and running noses. I was tired the first couple of days, and started on the lower doses. I feel its clearing my head, like better concentration. Everyone seems to be concentrating well. We are taking Kirkman's capsules, 125mg each, 35% extract. Heidi N Heidi, how often do your kids take GSE and how many drops per day? I wasgiving 6-12 drops a day but thought I read it was toostrong to give it daily. Thank you for all of your insight and greatinformation on so many fronts!DarciNew MapQuest Local shows what's happening at your destination. Dining, Movies, Events, News more. Try it out! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2008 Report Share Posted October 7, 2008 I wrote to you directly. I could really use your help with my son. I read your story last week and have been trying to figure out how to find you and suddenly, here you are. Caryn > > Hi all, > > I'm not really a newbie to this adventure but to this group. I've had > Lyme+ since 1990 (diag in 2000, now at ~85%) and my husband contracted > Lyme and babesiosis from me in 1996 (diag in 2000, now at ~90%). I > treated while pregnant with our daughter in 2004 and tested blood and > placenta (neg), did not breastfeed. We did not vaccinate at all. > > She began with sensory integration problems and language delay and then > PDD-NOS diagnosis at 2. Severe fever with swollen face around this time > as well with no answers from doctors. Discovered Lyme connection at > about the same time (thank you LIA for your web site!!! Hi Tami! ) Saw > Dr. J and we started treating her a little more than a year ago. Using > all typical treatments/therapies including GFCF diet (she was already > dairy/wheat free from baby she was so obviously sick from them). Diet > and then antibiotic treatment led to surges in language and decrease in > behaviors and hyperactivity/impulsivity/meltdowns. > > She had an allergic reaction to augmentin when we switch from zith > (hubby is allergic) but she had reacted incredibly well to it. Now still > on zith. Increased dose to treating dose for her height and weight with > great initial results but still at times things don't seem too great. I > know from personal experience that treatment for Lyme is two steps > forward and one step back (maybe more) but it's so hard when it's your > daughter. > > I've also started using homeopathy with her and that was amazing > recently when I seem to have figured out THE one she needs right now > (reminds me I have to order a higher dilution online). It is very > promising. > > I'm here partly for support because there are, of course, NO parents in > any circle remotely around me who " get it " and my parents and in laws > are wary of our unconventional treatments and lack of vaccines (sorry > not happening even if she becomes cured but that's another story). I > would like to know what other treatments I should consider for Em. I > have recently tested high in mercury and lead but chelation made me sick > and it's controversial... don't know if I'd do it with my daughter (I'm > the guinea pig heehee). I know that homeopathy can help the body remove > heavy metals so I'm going to look there first. We have not brought her > to a DAN doctor because of the incredible expense of that plus Dr. J visits. > > Thanks, > Jen > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2008 Report Share Posted October 7, 2008 " Severe fever with swollen face around this time as well with no answers from doctors. " Jen we have this in my family and for us it was chlamydia (don't know what kind since there was no testing done but it runs from my mom, to me, to my son - we have heart disease in our family and chlamydia pneumonae is the supposed culprit there). Anyway my son was very sick this past February and he responded rather well to this herb and homeopathic (Cantharis 30C) protocol here. http://www.doc20.com/disease/chlamydia/herbal-treatment.html Gayatri > > Hi all, > > I'm not really a newbie to this adventure but to this group. I've had > Lyme+ since 1990 (diag in 2000, now at ~85%) and my husband contracted > Lyme and babesiosis from me in 1996 (diag in 2000, now at ~90%). I > treated while pregnant with our daughter in 2004 and tested blood and > placenta (neg), did not breastfeed. We did not vaccinate at all. > > She began with sensory integration problems and language delay and then > PDD-NOS diagnosis at 2. Severe fever with swollen face around this time > as well with no answers from doctors. Discovered Lyme connection at > about the same time (thank you LIA for your web site!!! Hi Tami! ) Saw > Dr. J and we started treating her a little more than a year ago. Using > all typical treatments/therapies including GFCF diet (she was already > dairy/wheat free from baby she was so obviously sick from them). Diet > and then antibiotic treatment led to surges in language and decrease in > behaviors and hyperactivity/impulsivity/meltdowns. > > She had an allergic reaction to augmentin when we switch from zith > (hubby is allergic) but she had reacted incredibly well to it. Now still > on zith. Increased dose to treating dose for her height and weight with > great initial results but still at times things don't seem too great. I > know from personal experience that treatment for Lyme is two steps > forward and one step back (maybe more) but it's so hard when it's your > daughter. > > I've also started using homeopathy with her and that was amazing > recently when I seem to have figured out THE one she needs right now > (reminds me I have to order a higher dilution online). It is very > promising. > > I'm here partly for support because there are, of course, NO parents in > any circle remotely around me who " get it " and my parents and in laws > are wary of our unconventional treatments and lack of vaccines (sorry > not happening even if she becomes cured but that's another story). I > would like to know what other treatments I should consider for Em. I > have recently tested high in mercury and lead but chelation made me sick > and it's controversial... don't know if I'd do it with my daughter (I'm > the guinea pig heehee). I know that homeopathy can help the body remove > heavy metals so I'm going to look there first. We have not brought her > to a DAN doctor because of the incredible expense of that plus Dr. J visits. > > Thanks, > Jen > Quote Link to comment Share on other sites More sharing options...
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