I'm not understanding the Myco P results.....

[Dedee]

We got lab work back on my daughter and her Mycoplasma Pneumoniae antibodies were high. But her IGG number doesn't sound like the numbers others are reporting on this board. The report says that the IGG reference range normal is <0.90 and her IGG level is high at >5.00. Others here are reporting IGG levels in the hundreds. Is this just a difference in the lab running the test? Anyway, Her IGM reference range normal is <770 and her level was high at 1,177. The only other thing abnormal was a high C3D at 18 (normal 0-8). Also, got her CamKinase back last week and it was 158. The rest of it wasn't ready yet.

 

So I am completely clueless as to the treatment for Myco P. I have done a little research but I'm not sure which direction we will be heading. I faxed the results to Dr. Murphy's office and to our ped but I haven't heard anything yet.

For those of you who have dealt with Myco P. what has been your experience? Also, is this something I should be testing the rest of my family for? Both of my boys also have PANDAS but not nearly to the degree that my daughter does. I have so many questions. I feel like I am starting all over again. So confused.......

 

Dedee

Edited March 26, 2011 by Dedee

[Tamistwins]

Dedee,

Is your daughter on antibiotic? she should be on biaxin or azithromycin. Mycoplasma is very stubborn to get rid of. My son was on the antibiotics that are supposed to clear mycoplasma but every time we tested it the lab work just kept going up.

[Bat_Sheva_Myllys]

---Mycoplasma Pneumoniae antibodies IGG number doesn't sound like the numbers others are reporting on this board. The report says that the IGG reference range normal is <0.090 and her IGG lever is high at >5.00. Others here are reporting IGG levels in the hundreds. Is this just a difference in the lab running the test?

**I would say it is. I am quoting a Finnish lab figures, seem different from US lab figures.

Compare your results <0.090 and >5.00 ratio x55

to our at the time 30 and 200 x7

I think you want to recheck is the min figure you stated ehre a typo, or else, contact the lab and ask. If your figures are right your child's IgG is rocket high.

 

We are using Azith 500mg/day now for ca 1.5 years. It is effective! we got down from 200 to 39 in 9 months.

 

--Her IGM reference range normal is <770 and her level was high at 1,177. The only other thing abnormal was a high C3D at 18 (normal 0-8). Also, got her CamKinase back last week and it was 158. The rest of it wasn't ready yet.

**Not a medical specialist but 6 years with this taught me IgM is irrelevant because IgG is the post infection indicator and it too requires treatment, and unlike what many doctors think, it is the important indicator and it can be treated.

 

--For those of you who have dealt with Myco P. what has been your experience? Also, is this something I should be testing the rest of my family for? Both of my boys also have PANDAS but not nearly to the degree that my daughter does. I have so many questions. I feel like I am starting all over again. So confused.......

** Azith and long term

**Test the family, and treat if possible

 

See what I answered eysterday to SaraJane http://www.latitudes.org/forums/index.php?showtopic=12992

[Dedee]

My daughter has severe OCD when it comes to taking medication and absolutely refuses to take any by mouth. That's why we have been giving the bicillin injections. They aren't helping any by the way. We did re-check the lab because the first numbers that came in were preliminary and so we called and they said they would check and send the final report. It was the same. My daughter has numerous physical complaints and her behavior is unrelenting. We need some resolution soon.

 

Dedee

[Kayanne]

Generally speaking -- I've heard that Levaquin is a really good antibiotic for mycoplasma too.

 

But that is all I've heard. I don't recall reading about anyone using it here on the ACN boards. I do think there may be more side effects, so of course your should google it, and read all you can.

 

I just wanted to throw that out there.

 

Good luck.

[norcalmom]

There are also different strains of mycoplasma, and I think different antibiotics work better for certain ones. I'm not sure how important that is, because i think they are all treated similarly, but if might be if you have one that is not as common in the US. Dr Garth Nicholson has a list (maybe it was in a presentation posted?) but there is a list of the different strains. Most common in the US I beleive is Homnis (sp?) and ususally treated with azith(this according to my llmd) but the gulf war soldiers that had it had fermentans (sp?) (more common in Europe I think) and they used Doxy. (at least to start off, and then they rotate)

[LNN]

Dedee,

Have you spoken to Dr Murphy or Dr Storch about an ERP plan for your daughter's medication fears? This seems to be the biggest obstacle to getting her well and is holding all of you hostage to the OCD. I'm guessing it would be easier to start with a liquid to avoid any sensation of choking on something. Maybe you could start by pouring a little colored water in a medicine cup. Tell her it's medicine. Then practice having her just hold the cup, or touching the liquid with her finger, then putting a drop on her finger and touching it to her lips, then working up to having her put one drop on her tongue... For each step, have a huge reward. Help her understand that the OCD monster is the enemy keeping her sick so it can get all the attention and she needs to beat it by putting this liquid in her body.

 

You can do a little science experiment with her and put a small mound of sugar or salt on the counter. Have her add a few drops of water to the pile and watch the sugar dissolve. Ask her what the water did to the sugar (melted it/destroyed it). Then ask her if the water did the same thing to her (no). Try to carry that over and explain that the medicine (the colored water) will do the same in her body. That medicine can melt the OCD monster but it won't harm her body. Once you've succeeded in getting her to drink a dose of colored water medicine, then switch over to liquid zith and tell her it's just a better OCD medicine.

 

I'm sure this plan has gaps in it - but you get the idea. Start with something that you can afford to waste - whether it's colored water or liquid motrin. Then switch over to the real thing. If you don't have it already, I'd recommend "What to Do When Your Brain Gets Stuck" to help you build a plan, and also do a consult with Storch or Murphy to help you develop a baby-step plan to get over the medicine fear.

 

I think I remember your mentioning an option of having your daughter undergo a month of on site ERP treatment at UFL - would it be possible to do an on site program, with the goal of getting her to take her daily zith as part of the on site therapy? That way, you could be doing ERP, getting meds into her as part of that process, and as zith started to work, you might see the OCD get weaker, and she'd be better able to fight her meds aversion. It could feed on itself. Maybe speak to Murphy about customizing a plan?

 

This must be heart breaking for you. I hope you guys are able to catch a break soon.

[Dedee]

Yes, you are right on target regarding the ERP / CBT. Dr. Murphy strongly recommended that for my daughter to work specifically on helping her with that issue. We are currently in the process of making arrangements to get in the intensive program at All Children's at USF this summer. It will most likely be July before we start because of school and when they had an opening and so forth. I started working with my daughter last week with just taking one drop in her mouth (she could even spit it out if needed)but instead she threw up each time. So clearly I need to back up and take smaller steps like you describe. You always have wonderful suggestions. Monday I am calling my pediatrician and Dr. Murphy's office to see if anyone can understand the urgency of our situation. My daughter seems to get worse daily and we are just living from one rage to the next. If it means we have to do something drastic and start IV antibiotics then I am ready. Our quality of life decreases daily. I feel like I am loosing my daughter and fear I may not get her back. The labs were faxed on Friday to Dr. Murphy. I just pray she responds Monday. I hate being pushy to someone who has been so kind, but I am so desperate. Thanks for your help.

 

Dedee

[LNN]

Our quality of life decreases daily. I feel like I am loosing my daughter and fear I may not get her back. The labs were faxed on Friday to Dr. Murphy. I just pray she responds Monday. I hate being pushy to someone who has been so kind, but I am so desperate.

 

I totally hear you. I've been there a few times and I wasn't faced with a situation nearly as tough as yours. You aren't being pushy. You're being an advocate.

 

You may not be able to do a full program until the summer, but I think any foundation you can build in the meantime will help. The most important thing you can do is put yourself on the same side of the battle with your daughter. Make sure she sees you as a coach and team member, not an adversary. OCD likes enemies and will use that to isolate your daughter more.

 

That said, I'll contradict myself and mention an idea for "sneaking" something into your drinks...We successfully used inositol to decrease the intensity of OCD. It's easily dissolved and hidden in any sweet drink - drink yogurts, flavored milk, juice...it has a barely noticeable sweet taste, like powdered sugar. If you're desperate, you could try that to take things down a notch. I can send you a few articles and what we used for dosing if you think you might be able to try it. I doubt it would be a miracle drug, but it might help you get to July in one piece.

 

Try to hang in there. I know it sounds hollow right now, but you will get through this. You have no choice!

Laura