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NewBeginnings

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Everything posted by NewBeginnings

  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.
  14. Thank you for your responses! If it wasn't for this board, I'm not sure we'd have an answer yet. After reading everything that you all have shared, I took him to our GP and asked for the test back in September when I knew we were missing something. Sadly, even though we had taken him to tons of Dr's, no one tested him for it prior to then. I'm thankful to all of you for sharing what you have learned along the way. I hope I can pay it forward.
  15. He is on Doxycycline. He is young for it, but he's allergic to zithromax. Yes, his IgM was still elevated at his last test. We had the first test done in September and the second one done in December.
  16. I'm not sure anyone can answer your question and be 100% sure but sounds like you are on a better track than before. BTW - what are (were) your son's prominent symptoms? I ask as my son has a lot of symptoms similar to many on the PANDAS and Lyme forum but still has some that do not correlate with others. He has been diagnosed with PANDAS, Lyme, Bartonella; Babesia is suspected but I'm not beyond questioning the results. Regarding myco p my son only had high results for IGG (1.35; ref. range < 0.9) suggesting he's been exposed but nothing else. I do not see a test for the IGM.....I'll have to bring it up with our doctor. Thanks for posting. Gives me more to think about. bill I should have worded my post better! I know that no one can tell me if there is anything else going on, I was just wondering if anyone has ever heard of someone only having mycoplasma pneumonia. I'm sorry to hear your son is sick as well. My Dr explained that sometimes an elevated IGG level can indicate a chronic infection. My son's initial symptoms were extremely high anxiety, headaches, eye pain, vision changes, change in personality, twitches and tics, frequent urination or feeling as if he always had to go, bladder infection type pain, fatigue, OCD behavior, disruptive sleep patterns, and dilated pupils. His only remaining symptoms now are the tics and twitches which aren't there every day anymore and he occasionally has headaches and dilated pupils. Cranial sacral massage helps a great deal with that. He has flares every 6 weeks which bring out some of his old symptoms for 5 days and then they go away again. He has come a long way, but when they flares come, it reminds me we still have a long way to go. I've been told we will probably have to treat this for at least six, 6 week cycles. We have had his titers checked again and his IGM levels have dropped some but his IGG levels are still the same. We go back in 2 weeks to have them checked again. Our Dr said it takes a long time to get IGG to drop. Sorry for the long answer, hopefully it will help. Thanks for your response.
  17. I'd really like to hear others input on this. We first treated my son for Lyme based on his symptoms, even though his first 2 tests were negative (ELISA and WesternBlot by LabCorp). He didn't make a lot of progress so we looked into PANDAS. At that time his IGENEX came back, CDC negative but suspicious. We continued to treat with little improvement. Several months later we found out he has mycoplasma pneumonia. Very high titers both IGG and IGM. Since starting treatment for myco p he has made drastic improvements. He still has off days but by far better than before. I have read that a lot of things can cross-react with Band 31. I called IGENEX labs to see if myco p could also possibly cause a false positive and was told yes, it could. I was advised to wait until his myco p titers dropped back into normal range, and once he's off abx for 30 days to retest through Igenex. I am now wondering if it is possible that mycoplasma pneumonia is his only issue, or is it more likely that something else is still lurking in the background? Thank you for your thoughts or opinions!
  18. We were shocked when our son tested positive for myco p. He had no typical symptoms of it, but his titers ended up being very high. Ask that they test him for both IGG and IGM titers on the mycoplasma pneumonia test. Apparently the IGM window is a hard one to catch, but for our son his IGM has been high for a few months now. Also, when we changed his protocol to treat the myco p, it brought back his tics and then some. He went from no tics at all to lots of them and it lasted for 14 weeks. Then they finally settled back down. Now we see them every 6 weeks as the myco p flares. You can mark it on your calendar, they restart on that 6 week cycle, lasts for 5 days and then gone again. The change in your son's meds could be triggering the tics and ocd. I hope you get some answers soon.
  19. I never put it together about the protein! Maybe that's why our morning dose doesn't bother us (egg sandwich for breakfast every day) I do notice though, at the dinner time dose, if it doesn't involve some form of carb, it makes me really nauseous. That's why I linked it to needing a carb. Maybe for me, it's the combo of both. My son says that if he drinks a full glass of water with it, it helps too.
  20. I find that we have to take it right in the middle of a substantial meal. If I take it on an empty stomach, or with only a light meal or right after I eat, it upsets my stomach. Make sure the meal has some form of carb too, it really does help. Also, don't lay down for at least an hour after you take it to avoid reflux. My son and I take it with a ginger root capsule as well to help avoid the stomach upset. Hope this helps
  21. I haven't posted here in awhile, but thought I'd add our information. My son did (he still probably does) have tiny white foci on his MRI last May. He also has very high titers for mycoplasma pneumonia both IGM and IGG. We are entering into the end of our 3rd 6 week cycle and his symptoms increase almost to the calendar date every 6 weeks as he has his flare. We tested his titers in December and his IGM has dropped but his IGG remains the same. When we first changed his abx protocol (after we found out about the mycoplasma pneumonia) we saw dramatic improvement within 3 days of changing meds. I also want to note that the new meds reactivated his tics. Even though it brought out his tics quite badly, almost every other symptom went away within that first week. He continues to improve, with some bumpy days but for the most part, he is doing much much better. I also wanted to mention that his tics were bad for approximately 14 weeks after starting the new abx before they have started to settle back down. I am grateful to all of the parents on this Board and the information you all share. I still wonder where we would be had I not been told about myco p here. Thank you.
  22. Some people switch to Mino and report less side effects. I've been on Doxy (the big blue ones) for a looooong time now. I still have days that are nauseous. I also find that having some form of carb (I eat gluten free pretzels) and a cup of decaf tea about an hour after I take it really helps settle my stomach. Doxy can also cause pressure headaches. It feels like a rubber band is around the top of your head. They will get better as time goes on. Tumeric or Curcumin can help with the headaches. When my son has an upset stomach (he is also on Doxy), with him I find it happens when he is herxing or having a flare and charcoal and lemon water help to settle things down.
  23. Thanks everyone for your responses. I appreciate it!
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