norcalmom

I do not know why this interpretation is so prevalent among doctors. I've not only read research papers on the topic - but even MedLine will tell you that if your IgG is fairly high then you need to use it as a baseline to determine if its going up or down or stable. BUT - I had 3 doctors - including a Stanford immunologist and a pandas doctor - tell me that if he didn't have an IgM then he didn't have mycoplasma. My LLMD thought it might mean something, and a microbiologist that specializes in chronic mycoplasma is the only one that thought it meant that my son almost certainly had a mycoplasma infection. I wouldn't assume you have it though. Mycoplasma is very common. And - it looks like you all probably had it - but your son could not get rid of it. But obviously you should be tested for it again. IgM goes up at the beginning of the infection - but if you think it is a systemic infection that may have been present for years - they probably won't make IgM anymore. Here is that summary and a couple excerpts, but you can google it and find all kinds of papers on it. I'm pretty sure that the company's that put out the tests specify this (otherwise there would be no upper range of "normal" for IgG. http://labtestsonline.org/understanding/analytes/mycoplasma/tab/test ____________________________________________________________________________________________ "What does the test result mean? Antibody testing Significant concentrations of M. pneumoniae IgM and/or a four-fold increase in IgG levels between the initial sample and the convalescent sample indicate an active or recent M. pneumoniae infection. Increases in IgG, without IgM, can also be seen with a re-infection. If neither IgM or IgG are present in detectable concentrations, then it either means that a person does not have an active infection, has not had a mycoplasma infection (recent or in the past), or that the person's immune system has not produced antibodies in response to the microorganism." "Mycoplasma testing is primarily used to help determine if Mycoplasma pneumoniae is the cause of a respiratory tract infection. It may also be used to help diagnose a systemic infection that is thought to be due to mycoplasma. Blood tests for antibody to M. pneumoniae Two types of antibodies produced in response to an M. pneumoniae infection may be measured in the blood, IgM and IgG. IgM antibodies are the first to be produced by the body in response to infection. Levels of IgM rise for a short time period and then decline, often remaining detectable in the blood for several months. IgG antibody production follows IgM production, rising over time, and then stabilizing. Once a person has had a mycoplasma infection, they will typically have some measurable amount of mycoplasma IgG antibody in their blood for the rest of their life. In order to diagnose an active M. pneumoniae infection, a doctor may order both M. pneumoniae IgM and IgG antibody tests as acute samples and then collect another M. pneumoniae IgG test two to four weeks later as a convalescent sample. This combination of tests is ordered so that the change in the amount of IgG can be evaluated and because some people, especially infants and those with compromised immune systems, may not produce expected amounts of IgG or IgM."

Thanks for posting this. I've not heard of amantadine before, and will be looking into it for symptomatic help. My son has chronic mycoplasma, and pandas of course, and we are making strides with mycoplasma treatment. Hi Cam KII was 176 - when he was not in exacerbation. He appeared almost normal when we had that taken - relative to exacerbation, so like your child very high CamK. I think what is helping the underlying condition is the minocycline. Perhaps the amanadine is working on a secondary condition or helps with the toxic load that is very high with mycoplasma and makes symptoms worse. Minocycline is in the preferred class of antibiotics to treat long term mycoplasma. Doxycycline and a couple other are also used. MycoP can be very hard to get rid of (or control). My son was on adult treatment does of Azithromycin - for pandas - this before we knew about the mycoP - and he had two IVIGs during that time as well. I stuck witht he Azith for so long because I saw a good improvement when he started, and because I thought I could see a decline when we stopped a few times. And Azith is one of the drugs that is used for it! It just isn't the best, and perhaps since some of the time at the beginning of pandas we were only on prophalactic dose, perhaps his mycoP developed a resistance to it. (which happens if the does is not high enough). During that time - his mycoP IgG went from 2450 to over 3100 - normal is under 300. So, obviously the the Azith was doing nothing for his mycoplasma. Those two levels were taken about 6 months apart. He had not IgM - which happens to many if you've had mycoP more than once, or for a long time. MycoP treatment is long term - 1-2 years and very high does of antibitotics with two week break every 6 weeks or so after the intial phase of treatment (which is longer - 12 weeks or more with no break). And the antibitocs are sometimes rotated to get at the myco at different phases. I encourage you to get your myco levels checked every few months and look at the IgG (not Igm) to see if it is going down. If you want anymore mycoP info, I've posted a bunch in the past year that I've gathered. We started with Doryx - and saw a big benefit after first week or so (when their body is adjusting to the myco starting to die off) Doryx is version of Doxycycline that does not upset stomach as much. DS was on it for 13 weeks. We just switched to Minocycline. Because Doxy (or doryx) usually causes sun sensitivity and my son is fair and baseball season had started (he plays). He also takes an herbal tincture called A-Myco. It is from Byron White Formulas. Thanks for the amantadine tip - we will be researching it!

Your doctor could be wrong. If your child has had mycoP for a long period of time, or if they have had it several times, they probably will not make the IgM. The only thing to do is to wait a 2-3? months ( I don't really know the period you need to wait) or so and to retest - then you can see if the mycoP went up or down. If it goes up - there is no dispute - you would then have definative proof of an active mycoP infection.

ooo- thanks!

I'd like to read the entire article - does anyone know where/how we can do that?

We are currently dealing with an unknown gum infection. Not yeast. Not the herpes virus...been going on for a few weeks - and DS has been have bit of flair from this. He would also flair with new teeth. I'd try to speak with the dentist first and let them know about your concerns over bacteria in the mouth, plaque entering your child's system through either irritation or even ingestion, ask them for an ispection, and VERY mild cleaning or scraping with alot of suction to remove the plaque. Bump your antibiotics, and I'd also do some advil just before and for a day or so after to keep the inflamation down - and hopefully close the BBB when and if those bacteria set off a little immune reaction. I also don't do flouride, and won't take him if he was in an exacerbation or flair unless I thought there was a problem.

cool. We will take NAC more often! Hope they speed up that version of it for humans consumption.

Your son has an active mycoplasma infections. Preferred antibiotic is Doxycycline. Some Docs with prescribe similar antibiotic (like minocycline). I'd see a Lyme specialist- regardless of weather you think your child has Lyme or not - but you should test and get evaluated by an LLMD for Lyme since mycoplasma has a very high comorbidity with Lyme. IV antibiotics are another option if your child has tried longer term high doses of Doxy already. My son was on Azthormycin for 2 years - at a high does - when we discovered his mycoplasma. Azith had no effect. He was also on a short course of Amoxicylin (sp) during that time - no effect with that either. BUT - when he initally got DX'd with pandas - the azith worked for a little while. Not a cure, but he improved. Then, it just didn't seem to be doing anything. The reason I'd see an LLMD is, as I said, it is a common co-infection with Lyme, and the LLMD's are used to treating it. They know which antibiotics to use, can recommend detoxing methods , and herbal solutions. I've read a couple mycoplasma researchers think you need both - we use A-myco, and high does long term - Doxycline. Long term is 6months to a couple years. An LLMD can manage you through that. Most "regular docs" will only give you a few weeks at most . Now, this is if your child's mycoP is chronic. If your child is have tics and other behavioral symptoms, then most likely your child's mycoplasma has been there for a while, and is chronic. Also likely that he she has pandas - which may or may not go away when the infection does. If it persists, many of us have found help with IVIG in replacing those autoantibodies that attack themselves. My child was on Doryx - which the stomach tolerates better - but expensive, although our insurance finally covered it after some argument. Regardless, I would not settle for any course of antibiotics without seeing that the mycoplasma titers have gone down. Not just the IgM one, the IgG too. Its good that the IgG isn't too high - there is some evidence that indicates a longer infection, but not necessarily since everyone's immune response is different. Give LOTS and lots of probiotics as well. We recently discovered a powered probioitc that disolves in yogurt - with very high doses of good bacteria. Good luck. If you search my content - you can find lots of stuff on mycoplasma, we've been dealing with it for several years but didn't know it. Finally getting right antibiotics and herbals - huge difference. DS still has some pandas symptoms, and we did do two IVIG's before finding mycoplasma, which were tremendously helpful, but now that DS on right antibiotics - he no longer goes back to the tics and insomnia and bedwetting and ADD..etc that he would with every little cold prior. It usually isn't an overnight thing, once your child is in this state. Esspecially with mycoplasma. "Exaerbations" usually run a course of 6 weeks or so following a cold or other infection. Antibitoics usually shorten the period of time, and lessen the symptoms, but may take a couple weeks to see this effect. For us, it was about a week that we could see the antibiotics having an effect. And, they get better in waves - not linear- so you will see some bad days mixed in with the good.

Here is some info on chronic mycoplasma. The article title references Lyme, the article is not Lyme focuesd - it just says that mycoP is a common co-onfection to it. Tt is mostly about mycoP itself. treatment is usually aggressive antibitoics (not just 3 days a week) for 6 months, followed by several periods of 6 weeks on - two weeks off. Also, a list of antibiotics and herbals as well as detox recommendations. If IGM is active, and you think your child has had this for less than 6 months or so - it may not be chronic yet - although pandas symtoms, to me, would indicate it may have been going on for longer than you know. Either way, I'd treat as aggressively as you can tolerate. Person in the article has published numerous Myco P studies. One was a study of a 12 week course of antibitocs vs a 6 month course for chronic mycoP. High dose doxycycline I believe was what he was using. those on only 12 weeks had (75%?- something like that) relapse rate. http://www.immed.org/infectious%20disease%20reports/InfectDiseaseReport06.11.09update/PHA_Nicolson_0709_v4.07.pdf Your childs IgM may turn negative, but you need to watch the IgG - if it stays the same or goes higher - the infection is active. IgM - if infection is chronic, or if it is the second or thrid infection of that type- will probably not be positive. Adults that come down with mycoP who had it as children - also often negative IgM.

Have you had his immune system looked at by an immunologist? If not, a baseline of what his IgG and IgM (and all the other Ig's and subclasses is) might be helpful in trying to figure out why all the infections. He could have a mild immune deficiency, which could be related to a chronic underlying infection - or genetic - or something else. That might help you decided which immune boosters, antibiotics or IVIG (not neccessarily High Does - for pandas treatment - could be low does for immune def.). Strep maybe the trigger, but the cause is usually deeper.

Maybe its a side effect from the oral steroids - aren't headaches, aggression and mood swings frequent side effects and very common for most people that take steroids?

WE saw a gum specialist who thinks it the herpes virus. I've taken it upon myself to take him off antibitoics for a couple days, and he is doing 2x daily saline rinse and he has Xylitol mints (100% Xylitol) and a spray (its a nasal spray) and he is putting some lydocaine for the mouth the gum speciialst gave him for a couple spots that are very bothersome. Had to laugh when the gum specialist asked him if he every noticed this before when he was under stress. Even thought things have been trending up - a PANS home is always under some sort of stress... I also got some powdered probiotics that have much higher dose of active cultures - I mix into a couple tablespoons of yogurt - its tasteless and disolves completely. And is sits in his mouth for a while - this was suggested by health food person, that has 2 family members who have been on IV antibiotics, that had alot of issues with their mouths. Even though it isn't thrush in his mouth, I somehow feel that it may be the high does antibiotics are catching up with him. I just feel like a little break is in order - gonna call his LLMD on it today. I bout the L-lysine, but the caps are too large for him to take. At the moments - since he has just had his teeth cleaned and Doc said his teeth had almost no plaque (even though not been to dentists in probably 2 years) I'm going to stay away from anything loosening biofilm. His gums are irritated an bleeding, and getting bacterial from his mouth (biofilm) in the blood stream may be what's setting him off. I remember seeing some reports about a year ago from Dianna P about a number of pandas kids with severe teeth issues. After reading more about the cykotine and inflamatory/immune reaction that results from mouth and gum trauma (how its different form other areas of the body, and possible link to heart problems- similar to the heart issues that those with Syndenhams' Chorea have), I'm wondering if those kids tirggers are there mouth problems. Not that some pandas kids have higher incident of teeth issues. Kids with really bad teeth or gum issues are more likely to get pandas. So its another trigger - like lyme, myco P.

I'm not in that area, but Dr Tanya Murphy is. I'd try to see her if I was down there. She is a pandas specialist, and could direct you to, or give you, IVIG if you really need it. I think she focues on antibitoics and very throughout testing first - but (and if anyone has seen her - correct me if I'm wrong) does do IVIG as well.

Below are a couple articles- http://ods.od.nih.gov/factsheets/magnesium/ http://www.ncbi.nlm.nih.gov/pmc/articles/PMC295344/ This is where we started when we though DS had tourettes early on. Its one of the first things recommended for tics. I know that stress will deplete your mineral stores - and produce twiching - involuntary muscle movements that will disappear when you take mag/cal supplements. I had this happening when I herniated a disk in my back years ago. I mentioned twiches to an accupuncturist that said that she saw this with people in chronic pain - they burn through minerals faster (and or can't absorb them). I love and still sometimes take a supplement called - Min -Tran (mineral trasnfer) and have given it to DS a few times as well. Its also just enough of an relaxant to help you sleep - extremely mild - you have to focus on the effect about 10-15 minutes after taking it, but for me its enough to help "turn off" if I feel like I'm going to have problem sleeping. you can learn more about it here: http://www.standardprocess.com/display/StandardProcessCatalog.spi?ID=104 Almonds are a great source - I used make smoothies everyday with a couple tablespoons of almond butter(can't really taste this), strawberries or blue berries, a bannana, and teaspoon of lemon fishoil. sometimes some yogurt...I don't think the fruit is high in magnesium...but you are supposed to take with (calcium? ) to help absorbtion? (can't remember)..or was it VIT C? ohh I just googled it - its both. Below is list of tips. Also, high doeses of Vit D can chelate it..so gotta watch out not giving too much D. Honestly, it didn't do much. (made me feel better)...and at least I knew the tics were not a product of poor nutrition - but DS needed IVIG, his tics were pandas, not poor nutrition. Love the handheld blenders if you are making smoothies - the plug in ones rather than battery/rechargable - are better - and I use the measuring cup that some of them come with to mix right in. No blender to clean. Just rinse the blade really well and drink out of the large mixing cup - which fits int he dishwasher. You can google food sources of magnesium for more info. Tips on absorbtion here: http://www.ehow.com/how_3954_absorb-magnesium-supplements.html

We've had no issues with teeth or cavitites - on high dose of various antibitoics for pandas and Lyme for 3 years now. From what this article says, antibitoics are actually good for you teeth and gum... Dental flares are "mini" exacerbations - a flare in symptoms, usually somewhat less than a full blow exacerbation and usually much shorter (for us, about 70% and a week long vs - 100% and 6 weeks long) - when your child has a tooth coming in (or other inflamation or mouth problems). Some even get it from a cleaning. It took me a long time to realize DS was having this happen - because sometimes you don't know when a tooth is about to fall out and there isn't much irritation in there. We are done with most of that - DS just turned 13, so we haven't had any teeth fall out in over a year, but now have 12 year molars erupting, and a new gum issue that we've been dealing with. When you take care of his tooth - I'd advise some antibiotics for a couple days before and after, as well as a couple days of anti-inflamatories. Do your own research on the antibiotics if you are uncomfortable, but anyone with hart issues has to take antibiotics before teeth cleaning or any work in your mouth. I think pandas kids should take same precausions. (if they aren't already on a high dose antibiotic). A few days isn't going to damage their teeth. There does seem to be a higher incident of teeth problems in pandas kids. It could be that what is going on in the mouth is triggering pandas in your child. You know how gum disease is somehow linked to heart problems? It seems that infections and inflamation in the mouth (tooth coming in, herpes, absess etc.) for some reason produce a very strong immune / cykotine reaction. This reaction must somehow be linked with the inappropriate autoantibodies that result in cardiomyopathy (in syndenhams chorea, rheumatic fever), and pandas - there are also strains of strep bacteria (not the strep throat kind neccessarily) that are in your mouth, but perhaps they produce similar autoantibodies. Excellent article below. http://health.nytime...itis/print.html On another note- I'm off to buy some Spry gum and L-lysine for DS - who has gum irritation (which is either from herpes virus on the gums, and or using "total"care toothpaste - the tartar control and the whitening can really irritate gums). Thanks for the X-clear/pry tip nicklemama!

THANK YOU LLM and fightingmom. I tasted the antiseptic prescribed last night - and don't think DS is going to tolerate it (it also made my mouth tingle alot, so I'm wonding how this is calming to the gums...when it has open wounds it seems like it will sting) . I will be looking into l-lysine today. Although DS just started extreme low does of zoloft to bring up seratonin (why can't anything be clear cut?) Also wondering if anyone has done any topical steroids for mouth / gum stuff. I'm starting with the l-lysine, and want to avoid steroids, but seems like a topical applied for a few days might be acceptable solution if the l-lysine does not work for him.

saw gum specialist - he thinks it might be herpes - although DS has never had a cold sore (they can have it on the gums). Gave us some antiseptic mouthwash...bumping up all the anti-inflamatories. Hopefully this will be short lived. Thanks all!

I feel so stupid. DS has been picking at his gums (but not too bad - only at night before bed, not really complaining about it much) for over a month. He has a molar coming it, and I figured that was why he was picking at it. I thought is was a mild OCD thing. Past couple weeks he's been complaing about them hurting more and in different spots (but I thought it was because he picked at them). Took him in 2 days ago to have dentist check them out, and get a cleaning (way overdue). Dentist said its either his toothpaste -which is what he thinks it is - unbeknownst to me my husband gave him a tube of tartar control whitening toothpaste - OR a form of a virus (like a herpes virus or other virus like lichen planus). Past 2 nights DS wet his bed - and he has not done that in a year since his last IVIG. Its like a lightbulb went off in my head. He's been irritable and scratching his gums because he has an infection or inflamation. Dentist said it is too uniform for the picking to be the cause. So his gums aren't irritated because he picked them, he picked them because they were irritated. I'm now freaking out, because this has been going on for weeks. And for several weeks his irritability has been slowing getting worse, along with his one OCD thing. WE started him on zoloft about amonth ago - a couple weeks after this started...thinking that all his physical issues have been addressed, and most likely his remaining OCD and irritability were just what we were left with. So stupid of me. throw away your tartar control toothpaste everyone! Here is a great site for gum/mouth issues, and probable reason our kids react when teeth fall out - ________________________________________ http://health.nytimes.com/health/guides/disease/periodontitis/print.html THE AUTOIMMUNE AND INFLAMMATORY RESPONSE Evidence now suggests that periodontal disease is an autoimmune disorder, in which immune factors in the body attack the person''s own cells and tissue -- in this case, those in the gum. It appears to work as follows: The bacteria that form plaque and tartar release toxins that stimulate the immune system to overproduce powerful infection-fighting factors called cytokines. Ordinarily, cytokines are important for healing. In excess, however, they can cause inflammation and severe damage. Cytokines of particular importance in periodontal disease are known as tumor necrosis factor-alpha (TNF-alpha) and interleukin-1beta, which are very active in the mouth, and are important in causing destructive inflammation. In addition, white blood cells produced by the immune response to bacteria also release a family of enzymes called matrix metalloproteinases (MMPs), which break down connective tissue. Studies suggest that this inflammatory response may have damaging effects not only in the gums but also in organs throughout the body, including the heart. VIRAL CAUSES Certain herpes viruses (herpes simplex and varicella-zoster virus, the cause of chickenpox and shingles) are known causes of gingivitis. A 2000 study found that other herpes viruses (cytomegalovirus and Epstein-Barr) may play a role in the onset or progression of some types of periodontal disease, including aggressive and severe chronic periodontal disease. All herpes viruses go through an active phase followed by a latent phase and possibly reactivation. Some experts theorize that these viruses may cause periodontal disease in different ways, including release of tissue-destructive cytokines, overgrowth of periodontal bacteria, suppressing immune factors, and initiation of other disease processes that lead to cell death.

Thanks for posting. Its all such a web. My DS appeared to have some low zinc levels at one point, D3 levels (also related to cholesterol). DS takes CoQ10 (Reminds me he hasn't in a while because I need to buy some) we use the "slice of life" gummy vitamins - they have multi's, Co-Q10, and Vit B-12 (which I tell them to chew a little and let melt under their tounges - taste JUST like candy. I JUST read that under 18 should not take CoQ10, but don't know why..I will have to look into that. Perhaps specific studies on kids have not been done... The only way my kids take fish oil - Carlson's Lemon flavored as a "floater" on top of a dixie cup full of lemonade - then I let them have a small glass of lemonade to wash it down(you can't taste any fish, but its a little oily). We've tried evvery other fish oil pill and packet. If she will take (more) pills - then Krill oil might be better than fish oil capsules. they are smaller, and they aren't as fishy (no burbs after either). If you are ambitious and she will drink it, lemon juice mixed with water (and agave nector or other alkaline sweetener) is extremely alkalizing..also lowering inflamation. Here's Mecoloa take on statins - http://articles.mercola.com/sites/articles/archive/2010/08/10/making-sense-of-your-cholesterol-numbers.aspx and here is some info on CoQ10, if you are interested. http://www.umm.edu/altmed/articles/coenzyme-q10-000295.htm "People with high cholesterol tend to have lower levels of CoQ10, so CoQ10 has been proposed as a treatment for high cholesterol, but so far there' s no evidence whether it works or not. There is some evidence it may reduce side effects from conventional treatment with cholesterol-lowering drugs called statins, which reduce natural levels of CoQ10 in the body. Taking CoQ10 supplements can bring levels back to normal. Plus, studies show that CoQ10 may decrease the muscle pain associated with statin treatment. Ask your health care provider if you are interested in taking CoQ10 with statins." Read more: http://www.umm.edu/altmed/articles/coenzyme-q10-000295.htm#ixzz1quSfLwix

Agree with all above, and you may try a couple days of anti inflamatories on a regular basis - rather than one after the movement has started. You can't sustain that, but I think if they work for a few days, you may break the cycle, and then you can start some other anti-inflamatories that are naturals (fishoil, curcumin, diet changes), but for most this will reduce some symptoms (if they aren't tooo bad) not eliminate them. Hang in there.

Great to hear from you - with such a good update. Glad you are well and healing! Best- Norcal

I'm a bit of a Dr Oz junkie....did anyone see the weight loss episode with the 4 or 5 supplements for different weight issues last week? One was for Satiereal Saffron Extract - for those who had "emotional eating"...and what made me interested in that was that according to Dr OS - people have emotional eating (usually carbs) because they want to feel better - and the carbs effect serotonin, amking you feel happier when you down. I did only one google search, but looks like Dr Amen uses it in a proprietary blend for depression (has inositol, the saffron and B vitamins and 5HTP) along with saffron. Apparently it is something that has immediate effect (for the women that stopped snacking do to emotional issues anyway - they lost weight in days). Anyone heard of this or using it with their kids? We just started some SSRIs so I won't be trying it (unless I want to loos a couple L-Bs) - but wish I had know about this before.

Thank you all so much for this info. I didn't really understand just how slow you need to go. I think the Doc started him so low because she asked about drug sensitivity with him or other family members and I mentioned that I am very sensitive to things like caffine - Love my java, but can't have more than one cup, and anything after 10:00am will keep me up to 2 or 3 am. Maybe that is why she started at half the normal low does for pandas kids - just in case. I'd rather be safe than sorry. I've waited this long to start any phych meds, whats a few more months. (said like a pandas mom who's DS has been out of town skiing with Dad all weekend!!) I've seen absolutely no effect yet - but no bad reaction either. We sometimes do NAC - I am going to get more religious about getting him that every day if it works well with the SSRIs- that was actually something I thought of, but forgot to ask you all so thanks for letting me know those are OK together. After reading all your experiences I think we will wait another week before asking if we can go up to half a pill. Those pills are soooo tiny, I'm not really sure what dose he is getting since they are too small to judge, and when you split it that many times - so much of it turns to powder!

we started very low dose of zoloft for DS last week. Teeny tiny pills (lowest dose) broken into quarters - once per day. Its about 6mg/day....but the script is written for up to 3 whole pills per day. (so, up to 12 times what he is getting right now). I need to send Dr an email about when to increase the does. She said it takes a while to see if it is having any effect (2-4 weeks?) . I don't see anything yet. Its been 7 days. If your child is on SSRI's can you please share your experience with ramping up - how long/what dose 'til you noticed a change? My understanding is that they only work about 50% of the time, and if one doesn't work, then you move onto a different one to see if that one will work....could be a very long time before I know if there is a type and a dose that works for DS I fear...

oops forgot link - http://byronwhiteformulas.com/