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NewBeginnings

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NewBeginnings last won the day on June 27 2017

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  1. Myco P can be extremely hard to get rid of and I think it's often overlooked. DS's numbers are dropping every time we test him, but they are still above normal. (both IgG and IgM) I just wanted to point out to others that it can take a very very long time to get rid of and it's a bumpy road along the way. Symptoms really blew up the first 3 months and then flared every 6 weeks - you could mark your calendar for it. It WILL get better though - as those numbers started to fall, the symptoms began to improve.
  2. Norcalmom - thanks for sharing that link - it's a great one. FWIW.....my DS has had elevated IgM and IgG for over a year now. (15 months that we know of). IgM can stay elevated for long periods of time as well. I agree though, in that if there is elevated IgG only, to definitely keep an eye on it. The article norcalmom posted does a good job of explaining that even negative test results, don't necessarily mean negative. Quote from site "Clinical Testing for Mycoplasmal Infections Until recently one of the most difficult problems in detecting mycoplasmal infections was that the available techniques, serological and culturing procedures, were relatively insensitive for detecting intracellular infections. Mycoplasma culture techniques can be highly specific for detection of some mycoplasmal infections, but they are relatively insensitive because of difficulty culturing various Mycoplasma species. Conventional serological detection of mycoplasmal infections is quite difficult due to the lack of humoral immune responses in most patients. Also, detection methods that use antibodies against mycoplasma antigens are not very reliable, because mycoplasmas are able to hide inside cells. This can result in rather normal antibody titers during active mycoplasmal infections. "
  3. Does anyone take NT Factor Energy or have their kids taking it? I know a few adults that take it and they say it really helps, but I'm wondering if it works on kids?
  4. I'm wondering how often you can give Benadryl. (meaning how many days can they stay on it) Our LLMD says to give it during herx's, but I notice that it's helping a lot with sinus pressure and wasn't sure how long most people keep their kids on it? Thanks for any input.
  5. I agree with what the others have said. Go with your mother's instinct - there is no right or wrong answer. I thought I'd share our experience. Our ds also has high myco p titers, both IgG and IgM. I have been hearing more and more that myco p is not responding as well to azith. DS started treatment for myco p and his tics went through the roof for 12 weeks. After that he was doing quite well. He caught his first cold in years and it caused a big setback. He had finally started to put weight back on and we needed to increase his dose. When his dosage was increased, again we saw a lot of old symptoms come back. Scary ones. We were alarmed and my first thought was oh no, it's not working anymore!! I reminded myself of all my notes and what I have read. It's a long and very bumpy road and it's going to take time. Myco p is not an easy fix. It's a stealth, stubborn infection and in our experience, it has been far underestimated by a lot of Dr's. One of our Dr's has suggested IVIG multiple times, 2 other Dr's have said no way. DS has had his titers checked 3 times now. IgG and IgM are still high, but the numbers are coming down, but very slowly. His symptoms are improving. It's been a long rough road getting to this point. I can honestly tell you, I cried nightly wondering if we were doing the right thing - what if we were wrong etc. Then I'd see a glimpse of my old son coming back - we'd see signs here and there to let us know we were on the right track. He'd flare every 6 weeks and you could set your calendar by it. As time has gone on, his flares are less and less severe. He still has bleeps along the way and every time it happens, I panic inside. We continue to hold the course on antibiotics. DS is now having more symptom free days than not. We still have a long way to go though, I can still tell that much. But it is working for us. His titers are dropping, his symptoms are less. No one can tell you what to do, I'm sorry you are in this position. I wish none of us were here having to make such decisions. I just thought I'd let you know what seems to be helping our DS.
  6. We have to take it with food to avoid major stomach upset. We also always take it in the middle of a meal. I personally need some form of carb with it, my son needs protein with his. Try not to lay down for at least an hour after you take it bc Doxy can cause bad burning reflux. (found out the hard way!) As others posted, take away from antacids, dairy, magnesium etc.
  7. We use lemon water also. It works really well for us. Ditto on the epsom salt baths. I add hydrogen peroxide to our baths and if I have it, some ginger root. We also take Milk Thistle and on bad flare days, we use activated charcoal.
  8. I am in a similar situation. My son's IgG (total) and s. pneumoniae subclasses started dropping about 3 years ago, and he started slipping under the "normal" range for total IgG. His IgA was normal until about 6 months ago and is now low. Dr. B tells me that much of this is pre determined and the kids just don't show it early on. I really wonder, though, if much had to do with my son's sinusitis. I don't understand it fully, either. It is good that the mcop. is coming down. Both his IgM (more recent) and IgG are coming down - good! We have sinus issues as well. I really appreciate the responses. Hopefully one of the Dr's will call me back tomorrow. I have a phone consult scheduled for Monday with one of them and I will post what each of them have to say. Thanks again for the replies. If anyone can think of some good questions that I should ask, please let me know and I'll see what I can find out. If you have sinus issues then your son should probably get his s. pneumoniae titers checked. These pneumococcal titers are often low in children with sinusitis and it means that the body is not able to fight off strep pneumoniae (not the same as the group A strep in strep throat). S. pneumnoiae lives in the back of the throat normally, but when it gets up in the sinuses it can cause sinus infections if the body cannot fight it. I will definitely ask to have that test done - thank you!! Do you know how it's treated or what can be done to help it?
  9. I am in a similar situation. My son's IgG (total) and s. pneumoniae subclasses started dropping about 3 years ago, and he started slipping under the "normal" range for total IgG. His IgA was normal until about 6 months ago and is now low. Dr. B tells me that much of this is pre determined and the kids just don't show it early on. I really wonder, though, if much had to do with my son's sinusitis. I don't understand it fully, either. It is good that the mcop. is coming down. Both his IgM (more recent) and IgG are coming down - good! We have sinus issues as well. I really appreciate the responses. Hopefully one of the Dr's will call me back tomorrow. I have a phone consult scheduled for Monday with one of them and I will post what each of them have to say. Thanks again for the replies. If anyone can think of some good questions that I should ask, please let me know and I'll see what I can find out.
  10. I don't know. There is little known about the significance of the individual subclasses. Did you get a baseline of the subclasses before abx? Unfortunately, no. We've been trying to uncover this mess for several years now and have been to tons of Dr's. I had never heard of this test before until it was ran the first time 3 months ago. I'm planning to run the results by the 3 Dr's we have involved now to see what each of them say. I have a bad feeling I'm going to get 3 totally different opinions.
  11. No, he has not been on any prednisone because of possible Lyme being in the picture too. I had thought about the abx possibly bringing it down as well........ If I'm understanding correctly, won't having the sub-classes done on the Immunoglobulin panel give us a better picture as to what's causing it to drop?
  12. Thank you for your reply. Unfortunately, the sub-classes were not run on his Immunoglobulins. I'm not sure why and I plan to ask when the Dr calls. Immunoglobulin G - his score this time was 570. Last test it was 616. The range is 698-1560. His immunoglobulin A and M were normal. His myco p IgG this time is 631. Last time it was 685. Range is <100 is Negative. Myco P IgM this time is 1088. Last time it was 1323. Range is <770 is Negative Thanks for any help on this and /or any suggestions on what I need to ask when he calls.
  13. Hi, My ds is testing low on his Immunoglobulin G. We just got back our results from rechecking his levels 3 months later and his levels have dropped even more. I'm waiting to hear back from the Dr about this, but I really don't understand what this means and have tried to search the internet but am coming up with very technical answers. Does anyone have any experience with this or know what it means and can help me understand? He has mycoplasma pneumonia high titers, both IgG and IgM. They have dropped every 3 months though since we began testing. He is negative on ASO and AntiD-Nase B. I'd really appreciate any insight.
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