norcalmom

Has anyone had experience with the "strech marks on the torso" type rash - does it go away with treatment, and if so, how long did it take to see if it fading (or disappearing overnight?) Thanks!

Perfect~! Thank you!

It may be enough - but if not, maybe you can do half one day and half the next?

Thank for posting Vicki! Is there a site where my doctors can register directly (that doesn't show up as a window in the www.pandasnetwork site? I don't want to send them through the pandas network page because I'm afraid the doctors will dismiss it as a parent /patient focused event since the website is a parent based site. I have a couple docs I want to forward the info to - there are alot of new researchers presenting and I'm very excited to go! Thanks!

Thanks Tamistwins!

Just did a little digging and found this - I guess we should have done the other test . :An ELISA> 5 in an adult MIGHT be a clue of an active infection, but only the antibody tests done by IFA can tell you with precision how elevated the antibodies are." found it on some HHV- 6 website under the testing information.

Our LLMD just did a viral panel on DS. I'm wonder if the positives mean anything...since 95% of the population have had these viruses, 95% of the population should be positive for IgG. I can't find anything that tells me if his number are REALLY high (or normal population high...). Or if a really high IgG titer for these viruses might be a sign of a chronic infection. ( I did find one article on that, but it used a different unit of measure so I can't compare DS's results to what is quoted in article) The two in question were HHV 6 IgG which was 4.68 (neg under .76, equivocal under .99) this is different unit of measure than most of literate I've found on it, they use the ratio format, don't think I can convert it. And Coxsackie IgG - A7,A9,A16,A24 - were all 1:800 (neg under 1:100) All the IgMs and the EBV - were negative. Can any of you with viral panels done tell me what your docs said and what your numbers were? Thank you all!

Just Mycoplasma Pneumoniae - IgG and IgM.. If the IgM is negative and the IgG is positive, you NEED to retest in a could months. If it is going up - the infection is active, and most likely chronic. Most docts will only consider it positive if the IgM is positive, but that is incorrect. Epstein bar - same - I think there are 4 different ways they run it. IgG, IgM. I'm pretty sure if you get the test - they do it all 4 ways (just like the myco P test always test both IgG and IgM) Good luck

I would pull it. - for a number of reasons - putting dirty fingers in mouth to play with it could cause infection, or raise immune response to germs. Having constant thing bugging him in mouth could form habit of scraching at gums. Our dental flare were usually just flares (like most on the site - a few days, and about 20-50% ) - not full blown exacerbations - and I think having it for a long time would be worse than getting it out of there with a somewhat deeper wound - but mouths heal fast. My son had a gum infection. And after reading a bit on it, I learned that trauma to the mouth illicits a different kind of immune response and much higher level of cytokines. There's also the link between periodonatal disease and heart disease - which many believe is because they are both caused by the same autoimmune response (and theres strep in your mouth). Thats my two cents- Good luck! PS I'd give some advil and antibiotics before and after for a day or two, if you aren't already

DS had horrible migraines, nausea last IVIG- for two weeks after IVIG last time. It was HORRENDOUS. And, he was very hydrated - we we know that wasn't the issue. So this time I'm asking for some steroids. IF any of you that are reading this have Dr B (or another doc that uses steroids to avoid IVIG side effect-) - my question is - do you get steroids before/during or only after? and about what dose? For any of you that know our story and are wondering why we are doing another IVIG - Overall, things are not bad, not nearly as bad as when he had first IVIG, not as bad as second one either - so I think the antibiotics switch has helped a lot. We just got his mycoplasma titer numbers back, and it went down 200 points, which isn't really significant when your titer is 3000 but, what is significant is that it stopped going up. He only had one cold last winter, and he only had a minor blip in progress, but he had a weird gum infection for over a month that I think stopped his progress and set him back. Still not sure if he picked his gums until infected, or he had an infection and therefore was picking at them. But, he still has one very significant OCD thing (misophonia), and while I am open to going to the other side of the country for 3 weeks of CBT - I'm not going to do it if this is still immune based and it will do nothing but torment him, or be reversed with first cold he gets this winter. If I could get a cunninghams' test to show me that his neuronals were normal, and that IVIG would therefore probably not be helpful, I would just do the CBT. But, I can't get one until the lab opens (rumor at IOCD conference was December/January). For us, the IVIG has been very helpful, and I don't see it as a conflict with treating mycoP and Lyme. Our LLMD was supportive of the last time we did it. Thanks for your help with the steroids stuff ! I just want to have an informed discussion with our immunologist - I know he doesn't normal prescribe them.

Good summary of common blood levels and what they indicate: http://cprworks.com/Labvalues.html ______________________________________________________ LYMPHOCYTES and LYMPHOCYTE COUNT - Elevated levels may indicate an active viral infections such as measles, rubella, chickenpox, or infectious mononucleosis. Normal Adult Range: 18 - 48 % Optimal Adult Reading: 33 Normal Children’s Range: 25 - 50 % Optimal Children’s Reading: 37.5

Ds has high Monocytes (both absolute and percentage) and low neutorphils. Also high Eos (what are these I dunno? HIs lymphs were in mid range - completely normal. Monocytes were 13, range 3-10 Just looked up Eos..stands for eosinophils...and high amounts indicate allergic reaction or parasitosis . Here is Wikipedia page on it. Great. I never looked at that before, and since several docs shrugged this off, now I pO'd . DS was 6, and range is 0-4. Absolute was 4, normal range is 0-4 (so he is in normal for one measure). More on Eos here http://en.wikipedia.org/wiki/Eosinophilia

yep..gets more interesting when your pandas kid has episodes of picking at gums and you can't figure out if it is OCD related or infection related...and then you start to study gum disease and the immune system. The immune response to trauma to the mouth produces a much higher rate of cytokines, which cause inflamation, than anywhere else in the body. Of course your mouth is in your head, near your brain, which I don't think helps. We still don't know if DS picks his gums because of pandas, and that infected them, or if they were infected and he therefore picked at them. There are also studies of gum infection - where stress will trigger an episode of inflamation...so who knows. I think between the autoimmune reaction that gum trauma causes, the fact that strep is present (and probably spurring the autoimune reaction), and that escessive cykotines are released all in proximity to your brain and BBB you;ve got a triple threat with pandas kids- oh and did I over look that neutrophils are critical have to fight it off? If your child is low on neutrophils, is much, much harder to get rid of the bacterial infection in the mouth. (or even balance the bacteria that is always present). When I looked back as DS's neutrophil counts - he was at 40 (I think that was the number) and the normal range was 40-100 (or something like that - point is once it was on the line, and the other time is was 42, only 2 points into the normal range). It makes perfect sense to me that gum disease is related to heart health. Here is and excerpt from one of a number of papers on this - http://www.bio.davidson.edu/courses/immunology/students/spring2000/wright/restricted/paper.html _____________________________ The Immune Response Although periodontal disease is caused by bacterial infection, the resulting tissue damage is due to the immune response (Yamazaki). The first response triggered by bacterial infection is the innate immune response. Bacteria are taken up by macrophages, causing the macrophage to release cytokines. The cytokines cause the inflammation associated with periodontal disease. Cytokines cause the blood vessels to dilate and become permeable, leading to increased local blood flow, thus causing inflammation. The inflammation attracts neutrophils and more macrophages (Janeway). Studies have shown that polymorphonuclear neutrophils (PMN) are the most abundant immune cells found in areas of periodontal disease. Interleukin-8 (IL-8) is a chemoattractant for neutrophils, therefore it is logical that increased levels of IL-8 are found in gingival cells. PMN acts as an autoamplifier by secreting IL-8 and it also releases an oxidative burst of H2O2. The increase PMN and IL-8 are likely contributors to the inflammatory response (Gainet). The adaptive immune response is initiated by dendritic cells which act as antigen presenting cells (APC) to stimulate naive T cells. Porphyromonas gingivalis, one of the many bacteria involved in periodontal disease, is able to sensitize and activate dendritic cells (Cutler). Once dendritic cells are activated and presenting bacterial peptide, they travel to the nearest lymph node in order to activate T cells. A major source of bone loss has been attributed to the presence of CD4(+) T cells and the cytokines they secrete (Baker). Th2 cells are the predominant form of T cell in cases of adult periodontitis (Sigusch). Th2 cells are known to activate B cells to secrete antibodies. The epithelial cells of patients with periodontitis contain high levels of IgA and IgG, while IgM is found in deeper tissues (Kinane). The antibodies are able to aid in the fight of infection through neutralization, opsonization, and/or complement activation (Janeway). The latter two scenarios utilize the abundance of neutrophils and macrophages in order to phagocytize the bacteria. The bacteria that cause periodontal disease have adapted in a couple of different ways to increase their effectiveness. The first adaptation is displayed by Porphyromonas gingivalis; they cause apoptosis of lymphocytes, thereby increasing the spread of infection and leading to greater pathogenesis (Geatch). The second adaptation by periodontal causing bacteria is the production of superantigens (Zadeh). Superantigens are able to activate a large subset of T cells by binding to MHC class II molecules and V beta domains on the T cell receptor (Janeway). Research has been conducted that associates periodontal disease with cardiovascular disease, premature births, and other problems. One possibility for this association is an inflammatory response trait which would make an individual susceptible to developing both periodontal disease and atherosclerosis (Beck). Another possibility is that the cytokines (especially TxA2, IL-1 beta, PGE2, and TNF-alpha) and other inflammatory mediators produced during periodontal disease could reach levels where they begin affecting the cardiovascular system and/or placental tissues. Finally, the mouth may serve as a "bacterial reservoir" for the lungs, possibly resulting in bacterial pneumonia (DeBowes). Research is currently being done to further substantiate the afformentioned associations.

ANd thanks for the Doctors names LLM, Nancy D and Bulldog! My friend who runs a cardiac rehab program (she's a cardiac nurse) swears by this guy - michael gandy. He's and herbalist / accupuncturist, and she calls him her "witch doctor". I've been toying around with seeing him. He may not know pandas but may be able to help boost DS's immune system. I believe that there's something to be said about herbs and accupuncture helping your body heal itself. Has anyone seen a practicioner like this? Here's his site: http://www.livelongerlivestronger.com/chinese_herbs.html

I sent my nephew there before there was anyone down here to do IVIG. HE was new to the whole pandas thing at the time - he was brought into it because his nurse practicioners son had pandas (tic mainly I htink) and was trying to raise money for an IVIG (stanford would not perform ) she finally got it, and I think he is doing much better (he's older). search for amyjoy's postings - thats the mom/nurse practicioner. (sp??). She (and Dr Schweig) ran the recent pandas symposium in SF. (I was out of town) I did have a phone consult with him a couple years ago, and he attended the Texas Symposium last October. At that time last year he had only treated a small handful of pandas kids and I felt like he was still learning pandas stuff, and I wanted more of an expert. I'm sure he has alot more knowledge now, and he is an extremely caring physician. Att he time - if I was going to do IVIG I wanted an immunologist, we had done one in Chicago, and were thining about a second and I was searching all over for pandas docs closer to home. My nephew did have very successful IVIG done at his office in Petaluma. And if you have insurnce issues, it is very well priced (as far as IVIG can be anyhow!) He's very open to treating and testing and supplements as well as herbal remedies (with out without antibiotics)...he treats Lyme, but isn't a specialist. He did run our original Lyme and mycoP panels (at my request- but he concurred very quickly, and added a couple other tests on there too). I'm not sure if AmyJoy is still on the board I don't see her post anymore...but you can call there and talk to her - or Dr Sweig...amy has alot of pandas info and as a pandas mom, is more than happy to help in anyway she can. and she seems up on all the integrative stuff as well. I knowher son was getting relief from chiropractic adjustments for his tics prior to getting his IVIG.

Hi Lilly, My son has been on Doxy, then Doryx and now mino. Doryx is a very expensive version of Doxy that helps with the stomache irritation. I do not believe that it helps with the sunburn issue (but could be wrong here - I'd research that a bit) . Our LLMD move DS off Doryx because it was summer and DS plays baseball and is fair..and he said Doryx or Doxy will usually casue severe sun sensitivity. Doryx (or Doxy) seemed better for my son than the mino. We were primarily treating mycoplasma, so maybe different than what you are treating.If your child has co-onfections, that may come into play in choosing your antibiotics. I've read really good things about mino though.

Agree with LLM - and had to laugh a little when she said she gave up long ago walking into a drs office expecting answers and being told what to do. THOSE were the the days! I feel like I am a general contractor. And I have my team of specialists...and sometimes I wonder if the tile guy really can do the plumbing like he said, or if I should get a real plumber... Speaking of which - LLM- Can you tell me where Bock and O'Hara are located, and their full names? My last visit with LLMD he recommended I find a homeopath to consult with on DS -(sometimes the tile guys doesn't want to do the plumbing!) Thanks!

I don't know if they are still accepting kids into the IVIG study the NIMH is doing, but if this is only her second know exacerbation - then you may be elligible to participate. Free IVIG, with top docs and researchers in the country. Search the site a bit for the contact info. I know they screen by phone. It may be worth a phone call if they are still accepting. They are basically repeating the IVIG study done 20 years ago - so it has more up to date scientific protocl behind it (more kids int he study, double blind....etc) and screening is a bit different - more kids with primary OCD (20 years ago more kids primarily tics). Best of luck in your decision. I personally believe that early, aggressive treatment is the way to go. YOu maybe able to nip it in the bud. DR Tanya Murphy of Florida is doing an antibiotics study if you feel that you aren't ready for the IVIG - again google or search the site. I'm pretty sure they are actively recruiting for that study. Might also be worth a call to investigate what antibitoics, what kind of bloodwork etc...

Did he ever have any improvement from any of them? Even the first one? Did he ever get better and revert back? If not, I personally would not pursue this any more. And, I'm very surprised that Dr b would think "9 times a charm"...if he had not seen improvement after the first couple. I don't know your story, and if your son has active strep, classic pandas, lyme or other infectious triggers and or persisting immune deficiency or infectio, that may make IVIG a more compelling solution over traditional therapies. But, if he does well on prozac, perhaps he can tolerate an intestive CBT program? Wishing you best in your decision.

We've been dealing with teeth and gum issues for a few months now. Ds's molars are coming in (taking forever) and he developed a gum infection. At first i thouught it was a pandas thing - he was picking at his gums...then after dentist told me that molar coming in and gums red all over, he thought that he was irritating him by over brushing and using "total care" tooth paste..when switching tooth paste didn't help, perodontist thought might be herpes virus (which can present only on gume) but when that didn't resolve in a couple weeks (althouh by that point t had been going on for 4-6 weeks already) started to invsgtigate other stuff, gave DS a nasty tasting mouthwash, and after a deep cleaning and 10 days of mouth wash did nothing, finally gave him a course of penicillan - Which by the way you cannot take with antibiotics like minocycline. So had to consult with other doc, etc to go off one and one the other. Toward the end of the Pen, he had another flair and was picking them again. Took to another periodontist at UCSF - who took a look and compared to original photos, and said "looks like they at 90% better" its fine... But on occassion DS still picking at them. So in retrospect - I think may have been right - he picked at them first because it was a pandas thing. Maybe set off from sensation of molar coming in, but then took on a life of itself. Its hard to tell what came first chicken or egg. Because in my reading, the gums of people with this type of immune eficiencyy (my immunologist told me that gum infects that don't clear easily are usually found in people with defecinet neutrophils - looked up DS's old blood work, and he was on the boarderline for low in normal range the two times measured) that stress can set their gums off. This has been a big set back for DS. There's all kind of strep and cytokine reactions in the mouth and of course as you know ...so all I can say is give advil before and after the exam, and ask the dentist not to irriate anything or cause any bleeding if possibe...I didn't mention pandas but did tell them that my son had mycoplama infection due to immune disorder that and that gum iirritation would most likely have systemic implications for him....and neurologic and psychological symptoms. Good luck. let us know what the dentist sees in there.

does anyone know how to tell the difference? my DS has some on his "love handles" but has put on a few pounds recently. Can they biopsy them to confirm bartonella? Or is there something very distinct about them that differentiates them from a strech mark?

here is some info on what he is studying...which from what I read shows that he can see and prove how the BBB is breaking down in certain instances. http://devcell.bio.uci.edu/faculty/dritan-agalliu/ Does anyone know if he has anything to say about what to do when it has broken down? or how to make it healthier?

I tried to register - but didn't get a response back. I'm planning to attend, if the speaker list is good. Does anyone know of any research this Dr has done and if there are any suggestions for pandas or BBB compromised individuals that has come out of it? I'm assuming he must have something he wants to share with our community if we are invited. I see he was on the speaker list for the parent symposium in northern CA (I missed it- out of town) Does anyone know what he presented?

LLM- I forgot about that! mycoplasmas are a very well known contaminate in labs, because they are so common, so small, and difficult to detect. That article is a very good summary - basically for all of us, not just myco folks- and so much more informative that my summary "it messes up the immune system" ! Thanks for posting it.

Hi PTCgirl, There are different strains of mycoplasma. Some more common in different areas of the world. But - the tics carry the same myco as far as I know, as humans get. In heathy people - you don't usually even need antibitocs to clear it. But, it looks like pandas kids usually have a chronic type - their immune system does not clear it. Similar to those kids with super high strep titers , and no physical evidence of strep. I think the reason it is a common Lyme co-infection not just because ticks carry mycoP (along with other diseases) but that Lyme messes with your immune system, making it extremely difficult to clear the myco P. So, even if the tick didn't wasn't carrying mycoP, if you got Lyme fromt he tick, you can still have mycoP chronically - since it is a very common (its everywhere). Also, it was found that Gulf War Syndrome was actaully mycoP. The microbiologist that discovered that therorizes that 2 things could be why so many Gulf War vets had this. One, is that there are wheaponiszed strains of mycoP - that he believes our army/their armies worked on and these strains are stronger and more difficult to clear. The other theory is that troups get a huge amount of vaccines in a very short amount of time. Perhaps all the immunizations (20 or so?) messes up immune system enough to turn what would be a bad cold for most people in to a chronic condition, that they have extreme difficutly getting rid of. His work shows that about 70? percent of these vets relapses after (12?) weeks of antibiotcs. He recommends a much longer course. Google "treating chronic mycoplasma" for more info.