corinthdad

my dd has suffered through through these similar symptoms during/after pans flare . her doc said costochondritis. (Costochondritis (kos-toe-KHON-dri-tis) is an inflammation of the cartilage that connects a rib to the breastbone (sternum). It causes sharp pain in the costosternal joint — where your ribs and breastbone are joined by rubbery cartilage. Pain caused by costochondritis may mimic that of a heart attack or other heart conditions.) he put her on 800mg ibuprofen/Motrin for the inflammation . worked fast & well

thank you , i just bookmarked their home page

WHAT?!! nobody takes time to watch what goes on right over their heads.someday people will get mad enough to fix the problem as well as the symptoms. http://www.carnicominstitute.org/html/articles_by_date.html

my original stipulation for our involvement in the documentary was that Dr T is to be included & on board in hopes that our cases would be properly represented.

I just finished a long meeting with a couple reps doing a PBS type documentary on the situation here in NY.They made it very clear they are aware that this goes way beyond a couple groups of cases in NY so im guessing a much bigger national or international scope may be included . It looks like the DENT Institute has successfully convinced the Rochester cases to keep silent , away from the media & competent doctors , so we may not get much help there.They expressed great interest in pursuing this so if any one has any suggestions or contact info that may help , don't be shy. If there is an interest I could ask if I can post their e-mail here & you can run with it . Being a self employed contractor I spend very little time on line.EMOM good to here from you, sounds like dd is doing ok?.

Excellent idea! Hey, how are things going for your girl in NY? Thanks for asking . All things considered she is doing much better . After a year of cycles of making it through some days & some on the couch she is now making it through most every day , as well as starting pitcher on varsity softball as a sophomore.She hasn't lasted through a full game yet.This weekend she ran & played around the yard like I haven't seen in a long time & I knew she may have this almost beat.we didn't get much help from the medical industry other than Dr T.She responded well from a homeopath / nutritionist (vit d , metal detox, immune stuff ,changed diet) then Dr T put her on biaxin for 10 days & she really came around.After she stopped abx she did some ticking & suffered with a bad bout of costocongritis so her local doc doped her heavy on Motrin & that worked well for that. So as far as my dd , I feel good . as far as the other people suffering , I feel bad.I have seen enough of the ignorance & arrogance in the medical industry to make ME sick . I am concerned that the dept of health , cdc , fda , & the media are are being heavily pressured to hide this illness & possibly try to shut down any doctors working on it(same goes for lime & autism). Thanks again for asking

Dr Triffiletti & Dr Goodman need to combine forces for an east / west coast assault on the medical establishment.

emom is on it . our primary source of vit d is from the sun . if you are giving suplements , i have been told to stay away from synthetics ,go natural. our ped ordered labs for phosphorus & serum pth level(parathyroid hormone) . Google it up. it appears he is checking the bodies ability to properly process vit d.

leroymom , welcome to the matrix . After Dr T & others reveal what this really is & how to treat it , do we go away or do we demand the answers as to why the coordinated efforts of dent & nys dept of health & the controlled media have tried desperately to convince the public that this is happening in one small local area & is purely psychological in nature . Those answers may reveal what is CAUSING this.I believe I have a good compilation of research on this but cant post here . When & if you would like to get deeper into this , feel free to e-mail me .

our dd16 was un diagnosed for about 10 months while bouncing from test to test & long waits for neuro. she never took anything in that time so there was no confusion in results after changing her diet,(no sugars & replaced dairy with almond milk & organics) , adding a good non synthetic vitamin D & metal detox in the 9th month . it took a few weeks to kick in but she went from the couch to being able to start the softball season & is making it through the varsity practices in that short amount of time. we just got enough of a diagnosis last week & started biaxin abx & culturelle probiotic this weekend. it made her sick the first day but she is still doing well. i dont know if this helps much but after waiting so long , we had to do something in our power to help & now i believe nutrition & proper vitamin levels is a very good place to start . most doctors arent educated in this because healthy people are bad for business . sounds like your on a good path now .

Without getting too specific , I know that Lori's mom is on top of it.Just attended a seminar on Lyme by a microbiologist at a local college.

leroymom you have no idea how good to hear from you . For some reason , our families have not pooled experiences & knowledge very much , I had no idea any cases from leroy have been suffering that long . I am also trying to wrap my head around the anguish & suffering your whole town must be suffering . At least here in Corinth , the town & schools have been extremely supportive & helpful .The media missed the opportunity to help in a positive manner . I'm glad I finally found this network of people that know better.

My guess is that because your child had a stable father figure, she could not be included in the article. HA HA That's hysterical !! oops , bad use of words , dent will be after me now

My email response to the author: WOW, What happened to the girls in Corinth , what happened to the rest of the girls in up to thirty other states & Canada , what happened to ALL the facts , what happened to all the positive tests for Lyme , streptococcus ,igg iga ig4,ige vitamit d def , mycoplasma , M Pneumonia & many other abnormalities . Better question , how much did nys dept of health & dent pay you to spin this . Maybe it really does go much , much higher than that . I suppose fair & unbiased has a price tag . Given the facts & evidence Dr T has presented thus far , i figured this would have been the perfect opportunity for media, dept of health , nih & the medical community as a whole to pool their collective knowledge for the good of humanity but as they remain arrogantly ignorant & deceptive , i find a whole network of parents & doctors heroically working behind the scenes despite trash like you. You really dropped the ball on this one . truth always overcomes, forgive me people but i felt compelled to respond to the person that sat in front of my daughter & the write that trash.Its even more upsetting that we allowed the interview within 24 hours of spending her 16th birthday in the ER.

as posted in " dr t's latest my dd is a recent patient of dr t. We just got lab results back 1 strep titers all elevated 2 evidence of mycoplasma inf or is carrying m pneumoniae (most likely the latter) 3 no evidence of lyme 4 profound iga deficiency very low levels of igg4 , ig4 & absent basophils on cbc (this tiad is frequently seen in pandas prone individuals 5 vit d quite low in summary she has evidence of a pandas-like illness with probable streptococcal and mycoplasma triggers. she is one of 2 known cases in corinth ny (250 miles from leroy)& completely un-investigated by nys dept of health & dent. its odd how this ny times sat at my table for an interview but failed to provide answers that would explain the obvious questions that would arise.remember, my dd was suffering since may 2011 (15 yrs old at onset), alone, before any in Leroy or Corinth . This reporter for the ny times assured me the article would be thorough & tastefully done.