Mommy2MCL

Mycoplasm is a very hard bacteria to get rid of. That is our trigger too. We had been on Zith for 6 weeks and it only lowered IgG and IgM 200 points. We haven't had a recent blood test. We found a really good combo on Zith and Augmentin but I know ladies have suggested stronger antibiotics to try too like biaxin or doxycycline. Mycoplasm is also a big Lyme trigger. We have not tested yet but will... And I know there are lots of Myco lyme experts on here that can make suggestions for you. Search My name... I have several Myco posts and you may find some answers and ideas to go from there.

It took us 6 months to start researching PANDAS.. My daughter is not vaccine triggered but Strep /Myco. After Strep last Feb, she woke up one day in April with eye tics... We went to doctor after doctor... And no one suggested PANDAS...We even got a tourrettes diagnosis. My daughter was put on antibiotics in August and October. Both times her tics lessened. I saw a correlation but couldn't figure it out. Up until August our only PANDAS symptom was the overnight onset of tics. With each flare and the incorrect antibiotic she gets worse and we have seen the OCD come out. With a combo of Zith and Augmentin she was on the way to recovery. So I guess my answer is if you were to go off the antibiotic, do the symptoms worsen or come back. Ours did...

@Rachel I so agree!!! When dd was 2 she coughed 4 nine months and we could not find out why. We went to the dr, had allergy testing, did nebulizers ect. Never once were we given a blood test to check her out. I truly feel that could have been her 1st bout with myco P.

Seems interesting that today there is a post on this forum about this and then on the actual article a comment by pedi in Boston speculating PANDAS as a theory... (I Google searched his name) Seems like people are trying to diffuse a situation they are afraid of getting out of hand... Would love to hear from the mothers who organized this or the nurse that spoke. I hope the pedi and the new poster never have to experience PANDAS/PANS but I can guarantee our childs illness is more than a theory..

My thoughts would be if you had one tick bite, what's to stop you from having one years before that went unnoticed? If you see improvement on antibiotics and have a known tick bite, then go with your gut and get to a doctor who knows about lyme and PANDAS... Good luck and keep us updated.

I thought I had posted to this but I was half asleep... Our doctor mentioned something called biofilms in the sinuses. Basically the way I understood it is that the biofilms hold in the bacteria... Here is what he suggested to try... Get the Sinus Rinse bottle, the one with the black top that you apply pressure too. For the 1st two days use Afrin to open up the sinuses. Then discontinue after the 2nd day. In the sinus rinse bottle mix 3 drops Johnson Baby Shampoo in with warm water. Wash sinuses 2x a day. The thought is the soap will help break down the waxy biofilm and allow the bacteria to wash out.

Cara, I have learned it is trial and error... We had a horrible flare in January... We tried all kinds of thing to help her. Stop Zith, put back on Augmentin. Stop Augmentin back on Zith... New supplements ect... Doc wanted to try her on combo Zith and Augmentin. It's been so good! Her OCD is at almost Zero... She still has the anxiety but she was always anxious even bf this... Her tics are almost non existent too... Every once in a while I will catch her eyes roll but I have to really watch hard... You may need to talk to your doctor about trying something new or different. And I can't remember have you tested for co-infections? That may be something too... If there is an infection hiding in your son, treating him will be more difficult. Our doc also told us to watch for waxing and waning... Since being on the combo she has had one day of increased OCD, one day of increased liability and about 12 ours of some of the older tics coming back... Luckily those didn't last long and she was back to baseline...

We are on D3 1000mg, Attentive Child for Magnesium. NAC 1200 Mg. Vitamin C and 1x a week Iron. Plus Daily Florastor

Hello All, Since starting the Zith/Augmentin Combo about 3 weeks ago we seem to really be stabilizing out... So thankful and hope that this continues. OCD is down considerably and so are her tics... One thing that she still has pretty consistently is a vocal hum. Very low, not really a big deal. I thought I had read that it could be caused by a certain supplement and was wondering if it's just a time thing or something we should be working to get through. Thanks for the advice...

I am in a very similar state you are in... We are in a good place but the constant worrying I do is debilitating. We seem to be having mini symptoms... One bad OCD night... then nothing OCD after. Increase in tics for a few hours, then nothing... I've started asking her and she mentioned low OCD for now and the tics are not bothering her. I can't ask for much more but I want this nightmare to end. You are not alone... It's finding a new normal that will help. I try to be thankful for the little things... Which can be hard. good luck and know you are not alone.

@dedee- Not meant to hijack... But will you message me an email address. I had tried to pm you and it was full. We are dealing with Myco P too. We were just started on combo Zith and Augmentin and we have seen a world of difference. I keep hearing about the Lyme but we are in Texas and have no idea where to start. Good luck with your son.

What tests should be run and what are good treatments? TIA

I wonder if the craving of chocolate is her bodies way of saying she is deficient in certain vitamins or minerals. I googled some and found an article http://www.livestrong.com/article/467522-what-vitamin-are-you-missing-if-you-crave-chocolate/#page=1 There is not much info but maybe some of the ladies could tell you a test for these.

Also, he could be starting to have a flare. He may need a different antibiotic or a combo. My DD is taking a Combo Zith and Augmentin and we are beginning to see improvements again.

Okay... Need more advice... Started DD on combination Zith & Augmentin Saturday. She has had 8 doses. Yesterday and this afternoon complained of headache but fine with motrin... OCD, anxiety and emotions are up... Tics seem down Wait it out a few more days or should we proceed with a different antibiotic?

Hello, We are treating DD for Myco P. We are 2 months into treatment and are now using a Combo of Zithromax & Augmentin. We added back the Augmentin Saturday Night so she has had 8 doses of it. Yesterday afternoon and this morning she complained of a headache. If I remember correctly this may have happened before on Augmentin but I am not 100%. I didn't put a connection together until today. Anyone have experience with this? Could it be a type of mini herx? I gave her Motrin both times and she never complained again. I know Myco can be Lyme based but we don't really have any of the other symptoms and she usually does not get headaches at all. Thank you for your input!

Also, a mom suggested the book, "What to do when your head get stuck" If you can get her to verbalize her fears about eating you can help her work through them. We are on the 1st chapter and my dd is really opening up with us about her daily struggles and thoughts... In the future I would like to get her into CBT but that will come in time but this may help your daughter realize that her thoughts they may be bottled up so tight are normal and she is not the only one going through something like this. What to Do When Your Brain Gets Stuck: A Kid's Guide to Overcoming OCD (What-to-Do Guides for Kids)

I am truly blessed because I have my Docs cell number. I really try not to use it but in times of crisis it has been my best line of communications. We pay out of pocket so I view this as a perk. And will certainly only use it in emergency.

We are going to try adding back the Augmentin until Tuesday. So she will have both Zithro and Augmentin on Tuesday. Hopefully we can see some improvement or I will ask for a higher antibiotic like you said. As for Lyme, she doesn't seem to have any of the symptoms that I have read about on-line... And we are in Houston so I would not even know where to start looking for a respectable Lyme Dr. Thanks again! M

The only other thing I can add is ask if you have tried Motrin. While it is just masking the symptoms some it can help as a relief of symptoms. In a flare we use it 2-3 times a day. Mainly because it helps calm her symptoms and function normally at school and bedtime. I also agree that you should find a PANDAS specialist to treat your son. They know all the right tests to order and give but I think its great your Pedi is on your side. Mine rolled his eyes at me and made me feel dumb for suggesting this route. Good luck.

One thing I have learned is that this takes patience.... I was here two nights ago because we were having problems with behaviors and tics. I got so many good ideas. Also have you taken her in to see if she could possibly have a new infection? Also, my thought on doing nothing is that I would want to make sure the infection was cleared 1st. With PANDAS any chance her immune system is compromised she could flare. Just another thought, my daughter has had two flares due to teeth. One was a crown and the other was a tooth breaking through. Perhaps something along those lines. Good luck!

Again, thank you! I am going to look into all of this. I think the best part is just knowing I am not the only one going through this... I am thinking a 2nd antibiotic or possibly a higher dose is in order. We are two and half months in. I will talk to the doctor too. I am wanting to do CBT but our doc wanted us to wait until we had flares and things under control. Plus finding the right therapist may be an issue. Someone who won't make things worse Again ladies thanks! Your advice and knowledge have been fantastic.

Thank you for your reply! What an interesting concept... die off. I'm going to be doing some research on this. As for the probiotic do you think I could give a 4 O clock dose & then an 8 o clock dose? With school I don't have 2 hours to spread in the morning. And I just want to say that all of you on this forum are so wonderful. This journey can be so lonely. No one gets it. I am thankful for each of you and the knowledge you have.

I will give her Motrin in the mornings but haven't been consistent. Should I be more consistent?

It has been a tough few weeks. Seem to be in a flare and can't get out from it. We are thinking it was caused by a tooth breaking through to the surface. But she also has a bit of congestion so that could explain things too. Mornings are tough and evenings can be too... Tonight she added a breathing tic and said she had a song stuck in her head (could be normal kid stuff but I have read that also could be a type of a tic) Truth be told I worry myself sick about everything. Just as things get better this new stuff adds too it. Does this seem normal? We are treating Myco P Numbers in December were IgG 1574 IgM 1301 Numbers Jan 9 IgG 1189 IgM 1066 So we are seeing a drop in numbers but an increase in OCD and different tics... Many of her original have stopped. We are taking 250 of Zithromax in Mornings and Zyrtec and Probiotic Evenings Vitamin D3 Vitamin C Magnesium NAC Probiotic