Iowadawn Posted June 8, 2010 Report Share Posted June 8, 2010 Hi all! We all would be rich if we got paid for all the times our gut instinct was correct, wouldn't we? We all deserve doctorates--not even the "honorary" kind--the real thing!! Evan's (ds 11) is in the hospital right now. The day before he went in for behavior we could no longer safely deal with, I had our local GP switch Evan to Biaxin, my gut said mycoplasma. A year ago he had a Mycoplasma IgG of 3.9 and a IgM that was negative. Dr. K was aware of the raging/myco connection, but I could never get him to switch him to Biaxin with those results. Today...drumroll...IgM of 1.89 & IgG of 6.27 where >=.90 is positive. His strep antibodies dropped precipitously from 3 months ago to 188 & 440 The AntiDnaseB is down from 5440! Yes, that 0 is correct, for those who haven't followed our case. My strep antibody levels are 756 & >1360 (They are running them out now at Mayo).Looking like the same from 3 months ago!! The rest of the family's are not back yet. I asked to be put on Biaxin last week as well. There you have it, like so many of you, another puzzle piece. Just need the picture to know how to piece all our pieces together!! Dawn Evan had his second IVIG 9 weeks ago. Link to comment Share on other sites More sharing options...
JAG10 Posted June 8, 2010 Report Share Posted June 8, 2010 Hi Dawn, Oiye! So he had myco p recently with or without symptoms? Can you get it w/o the long persistent cough? I thought that the IgM doesn't go up after the first time one is exposed? Sorry, I must still be at a bachleors' level Link to comment Share on other sites More sharing options...
kimballot Posted June 9, 2010 Report Share Posted June 9, 2010 Dr. Dawn, Good job with your mommy instinct! I hope this means that your DS will soon be on the road to recovery! Link to comment Share on other sites More sharing options...
coco Posted June 9, 2010 Report Share Posted June 9, 2010 Yay Dawn! I am so glad you went ahead with your instinct! Hopefully you can see big changes very soon!!! Link to comment Share on other sites More sharing options...
deby Posted June 9, 2010 Report Share Posted June 9, 2010 Hi Dawn, I'm happy that you found another puzzle piece,I'm sure that you'll find all of them. I hope that Evan is doing better. I wish him a fast recovery! Deby Link to comment Share on other sites More sharing options...
trggirl Posted June 9, 2010 Report Share Posted June 9, 2010 Love that mommy instinct! So have you seen any improvements with the IVIG? Link to comment Share on other sites More sharing options...
Iowadawn Posted June 9, 2010 Author Report Share Posted June 9, 2010 We saw improvement both times, only to see him spiral BUT there are improvements that have stuck. Choreiform mvt in fingers, tics, huge pupils so often. The huge emotional baggage has been what has gone & come again. We have had strep in the family and I have been getting more & more suspicious of the mycoplasma--we have been able to ferret out what can be attributed to what. I feel we keep getting more & more puzzle pieces added to our pile, but no one has given us a picture(s) to put them together. I know the explanation of symptoms is general, but yes, we saw improvement, some is still holding--which makes me believe there are at least two different things going on. Elizabeth & others have encouraged us to do lyme testing. I'm giving in after reading the Igenex website. My heart did a a ka-thunk when I read some of the symptoms listed & then I started googling. Jaw discomfort (from the site) and heel pain(when I googled) are two odd ones that jumped out. He has had a litany of odd symptoms, that in and of themselves, don't mean squat. Taken together after reading the site--Aaaaaaaa. Took a 2x4, Elizabeth & DeAnn, but I came around. Thanks for being persistant. Barring some setback, Evan should be out of the hospital tomorrow. Thanks all, for praying & caring. Dawn Link to comment Share on other sites More sharing options...
Iowadawn Posted June 9, 2010 Author Report Share Posted June 9, 2010 Hi Dawn, Oiye! So he had myco p recently with or without symptoms? Can you get it w/o the long persistent cough? I thought that the IgM doesn't go up after the first time one is exposed? Sorry, I must still be at a bachleors' level No coughing here! Not really ever. Myco doesn't have to present with the walking pneumonia like symptoms. I guess it doesn't need to present like anything!!! It is an insidious wall-less bacteria that has to hang out inside cells. From what I gather, and with the some of the infections he started having from 10 months of age, the cells from the lungs up can be shelter!! He hasn't had an infection to speak of like this for a long time. Somebody else can weigh in. I'm still at a bachelor's and it is in music!!!! Dawn Link to comment Share on other sites More sharing options...
Mary M Posted June 9, 2010 Report Share Posted June 9, 2010 How you have the energy to continue amazes me...but kudos to you for your efforts and persistence. Link to comment Share on other sites More sharing options...
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