Mommy2MCL Posted March 14, 2014 Report Share Posted March 14, 2014 My daughter may have been strep triggered but her main chronic infection is Myco... I would run to anyone who can run the additional tests.... By the time my dd had her bloodwork her strep was normal (she had had it 6 weeks bf) But she had extremely high iGg and iGm for Myco. The more time we wasted the worse she got. Myco makes sense in our case. My dd has been sick throughout her life with various ear infections, sinus infections, tonsillectomy at 3, tubes at 5... Link to comment Share on other sites More sharing options...
Nela Posted March 14, 2014 Author Report Share Posted March 14, 2014 It sounds like my DS. He had an adenotonsillectomy at 3.5 years old. He has suffered terribly from sinus and ear infections. In fact, when he had the onset of tics, I rushed him to the ER not knowing what these tics were at the time. They performed a cat scan and found a sinus and ear infection. Will contact Dr T. He seems to run the most tests on his patients. Link to comment Share on other sites More sharing options...
Nela Posted March 14, 2014 Author Report Share Posted March 14, 2014 How is your DS doing now? Glad you found the real trigger. Link to comment Share on other sites More sharing options...
Nela Posted March 14, 2014 Author Report Share Posted March 14, 2014 Sorry I meant your DD. Hard to get used to the abbreviation. Link to comment Share on other sites More sharing options...
Mommy2MCL Posted March 14, 2014 Report Share Posted March 14, 2014 When my DD was 2 she coughed for 9 months... No one knew what was going on... None of the doctors ran any type of bloodwork. In my heart I feel it was the beginning of Mycoplasm... My DD is doing well. We are having a bit of a bump in the road but not really sure if I am making a mountain out of a mole hill. DD's onset was April a year ago. For 4 months she only had the tics. With each flare we have seem more OCD. She was doing fantastic on a combo Zith/Augmentin. But last Monday/Tuesday she got sick. Negative Flu/Strep. Right now we are just on zith and I feel like we are seeing more OCD... I am going to contact our Doc...From what I have learned from her last flare is to make sure I am on top of things. Good luck! This is a great board. Everyone is so knowledgeable here! The unknown is so scary! Keep us posted on your little ones too... Link to comment Share on other sites More sharing options...
kimballot Posted March 16, 2014 Report Share Posted March 16, 2014 It sounds like my DS. He had an adenotonsillectomy at 3.5 years old. He has suffered terribly from sinus and ear infections. In fact, when he had the onset of tics, I rushed him to the ER not knowing what these tics were at the time. They performed a cat scan and found a sinus and ear infection. Will contact Dr T. He seems to run the most tests on his patients. If your DS has a history of ENT problems you might want to consider Dr. B (if you can get to Connecticut) as he is an immunologist and really looks for infection and for immune dysfunction. It is quite possible that your son has some mild immune deficiencies that are leading to the recurring ENT infections. These infections can then trigger PANS symptoms. Link to comment Share on other sites More sharing options...
Nela Posted March 16, 2014 Author Report Share Posted March 16, 2014 Dr K did an immunological work up on our son in addition to strep testing but all came out normal. Are there other tests we should consider? At this point I want to do bloodwork for other infections to see what his trigger is....myco, lyme, cocksaxie, etc. What does Dr B test for? Thanks everyone Link to comment Share on other sites More sharing options...
Nela Posted March 17, 2014 Author Report Share Posted March 17, 2014 I am about to contact Dr. K and ask him to run more bloodwork for our son. I have contacted other doctors, but have decided to stick with him for now since he is only 1 mile away....(He is a great doctor!) I just have to push him to run more tests. Can anyone please advise me on the test we need to run. We have already done Strep, and Immunoglobins. I am thinking of ruling out Myco, Lyme, Epstein Barr Virus....but wanted to make sure we run everything since my son hates having blood drawn (don't blame him). How about asking him to have other members of the family tested as carriers of strep? I would love any advise you might have from your experiences. Much appreciated. Link to comment Share on other sites More sharing options...
philamom Posted March 17, 2014 Report Share Posted March 17, 2014 The lyme should be tested through Igenex. I doubt he will do that, so the very least ask him to run both the Elisa and Western blot through whatever lab you're using. In my opinion, the conventional labs are useless for testing lyme (many reasons why) - again my opinion. Pneumococcal IgG 14 Serotype Mycoplama pneumonia ANA, sed rate, crp Link to comment Share on other sites More sharing options...
philamom Posted March 17, 2014 Report Share Posted March 17, 2014 (edited) I'm not sure if he will check for viruses. Edited March 17, 2014 by philamom Link to comment Share on other sites More sharing options...
Nela Posted March 17, 2014 Author Report Share Posted March 17, 2014 You are right Philamom. I really want to do the Igenex so I will have our chiropractor sign the form, then if necessary, seek treatment from an LLMD. Are viruses usually found through blood testing? Which doc have you found the most helpful in your case? Link to comment Share on other sites More sharing options...
philamom Posted March 17, 2014 Report Share Posted March 17, 2014 (edited) Yes, you can check viruses through blood work. We see Dr. B and Dr. J in CT. Did have our daughter's first ivig with Dr. K in 2009, b4 we found out that we were also dealing with lyme and bartonella. Also saw Dr. T once in 2009. Edited March 17, 2014 by philamom Link to comment Share on other sites More sharing options...
rowingmom Posted March 18, 2014 Report Share Posted March 18, 2014 Test for bartonella, babesia, ehrlichia, the usual lyme coinfections. Even if lyme is negative that doesn't rule out the coinfections. Link to comment Share on other sites More sharing options...
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