NewBeginnings Posted October 7, 2010 Report Posted October 7, 2010 (edited) I just wanted to make a quick post to say "Thank You" to all of you on here that share your experiences and wisdom. My son has been in Lyme treatment for a year now and while he was getting better, he should have made more progress in that amount of time. It was all of the discussion on this board that prompted me to push for a Myco P test for our son. Now that we are treating him for Myco P, the difference is amazing!! (fingers crossed) We still have our ups and downs, but he has by far made the most improvement with this treatment. None of the Dr's we have seen even suggested Myco P as a possibility. A big heartfelt thanks to all of you for sharing. The support on this board is invaluable. Edited October 7, 2010 by NewBeginnings
philamom Posted October 7, 2010 Report Posted October 7, 2010 That's great news! Is your son being treated for elevated Mycoplasma P IgM or IgG?
NewBeginnings Posted October 7, 2010 Author Report Posted October 7, 2010 That's great news! Is your son being treated for elevated Mycoplasma P IgM or IgG? He is elevated on both.
thereishope Posted October 7, 2010 Report Posted October 7, 2010 Good to hear things are improving! I will keep my fingers crossed along with you that you see even more strides being made. Thank you for the update!
momaine Posted October 7, 2010 Report Posted October 7, 2010 Hopefully that will be the ticket for continued improvement. Best of luck to you.
MMC Posted October 7, 2010 Report Posted October 7, 2010 Our ds12 also has elevated mycoplasma, would have to look at lab results to see which one, but one was normal and the other elevated. How are your doctors treating this? Ours has him on 500mg zithromax a day for 4 weeks. Not sure if it has worked...symptoms seemed to improve, but have flared again this week...he has also had a cold.
NewBeginnings Posted October 8, 2010 Author Report Posted October 8, 2010 Thanks for all of the encouraging words and well wishes! He is currently taking Doxycycline.
KeithandElizabeth Posted October 8, 2010 Report Posted October 8, 2010 What great news!!!!! I have been reading the lyme boards and lyme blogs and I am beginning to think that the people who do not see an upward trend by the 12 week mark of lyme treatment are possibly missing one of the coinfections. Anyway, just my latest ideas. Thank you for sharing the good news. It is always so uplifting to hear these updates. Elizabeth
NewBeginnings Posted October 8, 2010 Author Report Posted October 8, 2010 What great news!!!!! I have been reading the lyme boards and lyme blogs and I am beginning to think that the people who do not see an upward trend by the 12 week mark of lyme treatment are possibly missing one of the coinfections. Anyway, just my latest ideas. Thank you for sharing the good news. It is always so uplifting to hear these updates. Elizabeth I agree with you. It's also amazing how many old infections have become reactivated for both of us. He is not out of the woods yet, BUT he is more relaxed and he is finally HAPPY again. The first week was a rough one though. I was very nervous we had made a mistake because all of his symptoms came back.....including ones we hadn't seen in awhile. Once that week was over, he began to emerge.
norcalmom Posted October 8, 2010 Report Posted October 8, 2010 That great news - thank you for sharing! Im a little confused, is mycoplasma a co-infection of lyme? I thought it was l"walking" pnemonia? Does having lyme make you more prone to getting myco-p, or is it carried by the tic?
NewBeginnings Posted October 8, 2010 Author Report Posted October 8, 2010 That great news - thank you for sharing! Im a little confused, is mycoplasma a co-infection of lyme? I thought it was l"walking" pnemonia? Does having lyme make you more prone to getting myco-p, or is it carried by the tic? Mycoplasma pneumonia is not a co-infection of Lyme to my knowledge. Lyme just makes you more prone to infections that normally wouldn't phase a lot of people. Your immune system is down and the bugs have a field day. I really had no idea though that Myco P could have such a profound affect. We also had no idea that old viruses could come back and reactivate. Unfortunately, it has taken a long time to figure out that Lyme is not his only issue and then the million dollar question becomes, which do we treat first?? We had really thought that he was having strep issues as well because his throat would get fire engine red and his tonsils were huge, but yet, he never complained about a sore throat. He also has a history of Scarlet Fever so I thought for sure he has PANDAS. He fit the category. I still don't feel like we have all of the answers. All I know is this month makes 1 year of treatment and when I look back at his daily log that I keep, he has come such a long way. Some days, when they are bad ones, I worry that we are having a setback or we are not getting anywhere, so I'll flip back through that book and realize it's just a small bump in a long road and try to be thankful for where he is now. Out of the last 12 months though, the last 3 weeks on Doxy have made the biggest impact on him. He did start a new mild facial tic last Sunday, but I can tell things are stirred up. His headaches are gone, his pupils are no longer dilated, all of the rest of his tics are gone, his throat is no longer red, but the biggest change is that he's HAPPY again. Other meds have stopped some of the symptoms but didn't improve his mood at all. I'm hoping I'm not jinxing anything and I know I got off of the subject I was replying to, but I just thought I'd share some info. Hopefully it will help someone else.
KeithandElizabeth Posted October 8, 2010 Report Posted October 8, 2010 What was your son on for lyme treatment before you started the Doxy? I am curious as to what the antibiotic regime was that did not help with the Mycoplasma. Elizabeth
NewBeginnings Posted October 8, 2010 Author Report Posted October 8, 2010 What was your son on for lyme treatment before you started the Doxy? I am curious as to what the antibiotic regime was that did not help with the Mycoplasma. Elizabeth He has been on numerous things. Keep in mind, he was never on any zithromax due to allergy. We have been limited on what he could take. Prior to Doxy he was on Aug/Amox combo but the penicillin family won't touch myco p because myco p lacks a cell wall. At that time, we didn't know myco p was an issue. He has been on ceftin, omnicef, amoxicillin, augmentin and now doxy. We held off on the Doxy due to his age but when we found out about the myco p and our only options were zithromax family or doxy, we went for it. I said I'd buy my son new teeth if it helped!! As it turns out, for any of you that have kids on the edge of the age bracket, you can take your kids and have a full set of xrays done and as long as the crowns are fully formed, it will not have an effect on their teeth. All of my sons permanent teeth are fully formed, but not in yet except his wisdom teeth and I don't care if those come in purple! Our dentist said it will turn the root of the permanent teeth darker but those aren't exposed so it doesn't matter.
KeithandElizabeth Posted October 8, 2010 Report Posted October 8, 2010 Oh, this makes sense now. Our son also had mycoplasma issues and we did not know it because his IGM was normal, but his IGG was very high. He was also on Augmentin at the time and we later discovered that Augmentin does not help with mycoplasma. As I have mentioned before, our LLMD feels that mycoplasma is second to lyme in terms of how much damage it can do to the body and how sneaky it can be because it lacks a cell wall. Again, you much fell so relieved to see your son doing better. Just the fact that he is happier is HUGE! Elizabeth
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