JAG10

Absolutely, there has been improvement, just not complete remission. She still reacts to immune challenges, which are far too frequent this time of year, by backsliding, but then returns to that same 75% mark. At that mark, her OCD symptoms are well in check, more age appropriate behavior, better socially. Where she falls short is in the concentration/focus/task completion arena and memory/processing speed. Her eyes are still widely dilated all the time, but she's been off all psych meds since IVIG (they didn't help much anyway). It was interesting bcs right after IVIG, she looked different bcs of her eyes. They were constantly dilated before IVIG and three days after IVIG there was just a dot of black pupil and all beautiful hazel they way they should be! If we could get her body to stop reacting to immune challenges, her brain would have a chance to heal and the swelling go down.

Congratulations! As someone who sits on the other side of that 504/IEP table everyday, I would agree visuals make a stronger impact, especially when you are talking about something not well known or accepted. I'm sure you are quite convincing!!! At least they didn't say...."So you want OT?"

Can you explain the science behind why IVIG would result in ASO & DNAse B titers going down (a lot) but myco-p going up? Dr. K said something about myco-p being elevated in the adult public in general, but I guess the same isn't true for strep?? Does that make sense?

I'll admit, I have a very hard time reading these studies...God Bless Madeleine for being able to design and run them!!! Is the bottom line in this which came first; chicken or egg debate that these scientists determined the predisposition for auto-immunity comes first, not that the auto-immunity is caused by these two manifestations of Lyme (joint & heart)?

I bet it can be! I posted all her results over on PANDAS; they have started to come back down, but still I'm not letting this go, it's the only sign of sickness/infection I can find. What's interesting about those levels in March is that at that point, the only treatment she had received was 10 days amoxicillin; the zith and biaxin came after that lab was drawn. Here's what I posted over there: These were my dd's levels: 3/10- IgG 1.63, IgM 667 (IVIG 5/10) 7/10- 3.02, 764 11/10- 2.10, 751 So, her myco-p went up in the summer post IVIG when there was no sign of a cough whatsoever and no increase in behavioral symptoms either. All her IgM levels are in the borderline range. When I asked Dr. K about it, he said it was nothing to worry about. I don't know what to believe anymore. THERE IS NOTHING BLACK AND WHITE ABOUT PANDAS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Wendy, I liked that article by Dr. Greg Emerson you had posted for me last week and plan to add it to the arsenal so I can refer to it at next dr appt. http://www.drgregemerson.com/fact-file/mycoplasma One thing at the end of the article that is interesting... To maximize recovery, other problems MUST be addressed concurrently -viral infections -gut dysfunction -immune dysfunction -environment toxicity -nutritional deficiency I'm definitely getting chronic myco-p checked out for my dd even though she only has 1 of the 11 symptoms listed (memory/concentration) it's better to be sure. I don't mind the input; I wouldn't post if I did

These were my dd's levels: 3/10- IgG 1.63, IgM 667 (IVIG 5/10) 7/10- 3.02, 764 11/10- 2.10, 751 So, her myco-p went up in the summer post IVIG when there was no sign of a cough whatsoever and no increase in behavioral symptoms either. All her IgM levels are in the borderline range. When I asked Dr. K about it, he said it was nothing to worry about. I don't know what to believe anymore. THERE IS NOTHING BLACK AND WHITE ABOUT PANDAS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I think that is possible...but her myco-p doubled from what it was before she started any abx at all. How do we explain that? Dr. T had said he thought 10 weeks on biaxin was more than enough time to clear myco-p, but Wendy gave me a link for a doc that said 9-24 MONTHS!!!! Really?!?!? I just wonder if there is any reasoning behind IVIG bringing down the antibodies of strep but doubling the antibodies of myco-p??

Do you think this is possible.... Pre-IVIG; dd had highly elevated ASO and anti-DNAse-B >1360, somewhat elevated myco-p (1.6) She had also been on amoxicillin (10d), zith (3wks) and biaxin (12wks) immediately preceding IVIG 9 weeks post IVIG; her ASO and DNAse-B drop Significantly, but myco-p doubles (3.02) She was on Augmentin those 9 weeks Do you think it is possible that IVIG results in decreased antibodies for cleared infections and increased antibodies for active/chronic/stealth infections??

Do you think this is possible.... Pre-IVIG; dd had highly elevated ASO and anti-DNAse-B >1360, somewhat elevated myco-p (1.6) She had also been on amoxicillin (10d), zith (3wks) and biaxin (12wks) immediately preceding IVIG 9 weeks post IVIG; her ASO and DNAse-B drop Significantly, but myco-p doubles (3.02) She was on Augmentin those 9 weeks Do you think it is possible that IVIG results in decreased antibodies for cleared infections and increased antibodies for active/chronic/stealth infections??

Are different cyst-busting abx needed for different infections? I've read a couple of places on the net that myco-p can go chronic in cyst form....but if anyone here can confirm....And if so, what kind of cyst buster goes with the macrolides? At the same time or alternating?

This is way out of my league, but I think the exact measurements are important and not just whether they are falling or not. One of the docs won't administer IVIG to children with IgA lower than 20, others will, but change brands. There are parents who have reported more frequent administration with their goal being to build up to medium-sized doses of IVIG and maintain IgG levels in the upper end of the normal range for immune deficiency. Is that what you meant, Fixit?

That's what my problem was.....when I questioned the dr....and let him know that I was really unhappy that they had been telling me everything was normal....and then when I get a copy of the results ( after they call to get them 2weeks later) there are 2 items that are flagged low. The Dr. now says that those levels are based on adults, and it's okay that she has low levels as a child. He told me that he doesn't consider what the subclass levels are, only the total IgG and IgA, and that he didn't even ask for those to be tested.....that's just something that they did. This also happens to be a lie because I'm the one who picked up the order for bloodwork and took it with us, and he did order the subclasses to be tested.......needless to say; he is fired and we now have a new pediatrician! I'm sure Dr. B will be able to explain it all since it is his area of expertise. I wonder if one individual subclass being low isn't that big a deal, but when they are all low that is what yields LOW out of range Total IgA; I'm just speculating based on the way statistics work. At least my pediatrician was honest and admitted she didn't know what half of those labs were she was ordering!

I agree, we cannot generalize what has been determined to be true in some cases must be true in all cases. The validity of chronic infection resulting in mental illness does not have to be at the expense of the validity of a dysfunctional immune system in the absence of an underlying, stealth, chronic infection resulting in mental illness. Does any of us know that both are not possible? It is being intimated that if your child still has any symptoms or reacts to immune system challenges behaviorally, there must be a chronic infection and you just haven't tested enough yet to find it. My point about the blanket screening protocol is this....many folks, not just here, say the typical Lyme screenings are inadequate because the bands that would have identified those who received the lyme vaccine years ago were removed and never put back in. So, if the screening tool pediatricians would envelop into their protocol is inadequate, don't they run the risk of giving parents the impression lyme has been ruled out? I'm not talking about the parents on this board who have heard many times over the pitfalls of the local lab screenings; we're talking about the scenario presented in the post. Perhaps a better approach would be to train pediatricians to make the clinical diagnosis that LLMDs are now trained to make or at least develop a clinical screening tool to accompany blood test screening tools that are not so broad that they fail everyone. Because pediatricians are nowhere near this point right now. Right now, if you don't have a known tick bite AND the bullseye rash, their protocol is not to pursue Lyme in any way, shape or form, not even "better to be safe than sorry" let's do one complete course of abx.

For myco, you'll need an abx that takes care of intracellular microbes. This is my question...abx for how long for a chronic myco-p infection and how do you know when it is gone since the titers can take awhile to descend? And I had asked this on the Lyme board....can chronic myco-p form and hide in cysts where the macrolides may not be effective in erradicating it?

Melinda, My little one has a cold AND strep is going around her class!!! Just to keep everything interesting.....

But what good would it do if the screening measurements are so poor in quality?

You are correct; both her IgG and IgA are LOW

Thanks, Elizabeth! So macrolides are effective against myco-p because they can penetrate their cell wall or is it that they don't have a cell wall? Can chronic myco-p form cysts? If not, how does it survive in a chronic state? Is it only Borrelia that forms cysts or are there others?

I'm trying to understand what is meant by cyst-busting. If macrolides are able to help the body destroy intracellular bacterias why is cyst-busting or adding cyst-busting medications necessary? Perhaps my question reveals how thoroughly confused I really am

Hi Purple My dd10 had high HDLs, but I was told that was from the fish oil; triglycerides were fine. She was on 2 mg of Abilify for on and off for two years, didn't help more than it harmed, so we stopped about a year before these labs were drawn. Her Vit D is 50 in a reference range of 30-83, so that's okay too. She does have a slightly elevated albumin/globulin ratio. I hear what you're saying...this condition, syndrome, complex whatever they end up calling it... is as crazy to figure out as the symptoms it causes! JAG

What did you all think of the "birth-month effect" theory?

Our lab report states an IgA 2 range of 2 to 37mg/dL and our dd's was 2. It's quest...are these ranges done by age? She's 10.

What to believe is a good question! We've never been concerned about TS, but I know that isn't what you're asking. I think dd's immune system is dysfunctional. To me, the question is.....Is the immune system dysfunctional because it is fighting a persistent, covert infection or is it dysfunctional because it thinks it is fighting an infection it has known before but it is too dysfunctional to know it's no longer there? But my dd is not completely or nearly asymptomatic, she still reacts with backslides that have kept her around 75%. I don't know what those numbers mean for your boys who are doing so great. Just read your edit..... so hard to figure out! If you don't have a child who swabs or cultures positive...how to you know? I mean, ASO, DNAse B, Myco-P.....they're only suppose to rise in response to their specific infection, but what if that isn't true? How do you know for sure it isn't a dysfunctional immune system sending out EVERY and ALL the wrong soldiers each time it detects anything it perceives as in the same neighborhood of "foreign"?

Hey Kelly, I just got dd's labs back. Total IgA Feb 2010- 64 bottom of range May 2010-IVIG Nov 2010-46 now low Total IgM Feb 2010- 798 Low Nov 2010- 722 Low She hasn't had any signs of tics in a year, tics were never a big issue for her, more OCD and mostly ADD/cognitive symptoms. (I would have thought IVIG, even 6 months ago, would have messed it up in the other direction, no )