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My DD7 is fighting IgM EBV and CMV - having a very hard time with fatigue and intrusive OCD. Motrin has done wonders. She's also on artemisinin - just finishing 3rd 5-day pulse before taking a week off. There's a guy in the CFS world - Rich Van Konyenburg - who has research supporting methylation/glutathione issues that shows promise. About to put kids to bed - will post the link tomorrow. What sort of methylation/glutathione support have you done to this point? Anything for ATP or methionine? The stuff Jodie posted on the GcMAF looked promising, but not sure about using on a child...guess it depends on what avenues you've exhausted. Very hard decision. Will log in tomorrow - very interested in what you've done so I can learn about helping DD.

You can also get a doctor's note (our school has a form they need a doctor to sign) that allows your son to take motrin while at school. We tried that but it was cumbersome. They wouldn't take my son's word for it when he asked, so I either had to send in a note that morning - it was confusing for the school, as they don't like to do "as needed" or be in a position of interpreting things. They want things spelled out. So we ditched the motrin and went with the aleve once he weighed enough (@55 pounds I think). Yes, you should be able to get him a pass to leave the room when he has the urge. Then it will be a matter of training your son to recognize the building premonition/need to do the compulsion while there's still time to ask for the pass. Like someone potty training, there may be times he's "too late" and does the compulsion without thinking about the consequences. It's a tough thing for someone who's brain isnt' all there. So I would ask for it, but prepare them for failures early on or see if you can get him a pass that's always kept at his desk - something he can grab quickly without having to get called on or explain himself. As for CBT - it is a very powerful tool. ERP is harder (IMO) but is also worth looking into. CBT can be made to be very intuitive,even for younger kids. We use it in our house every day. It's just "normal" to us now and is a big help.

double post

I'm not well read on Klinghardt, so speculation on my part, but from what little I've heard him say, my interpretation is that ticks carry some of these things and then make the body weak enough that you become a target for other things, unable to clear them - not that ticks carry all of these things. I think he subscribes to the "perfect storm" concept where it takes a series of events to make someone chronically ill. He's said he actually thinks lyme is only a small part of the chronic illness. But I'm sure others who know his work better can add much more.

My son went thru a period last year where he was exhibiting highly inappropriate behaviors in school. he was in the midst of a herx that looked all the world like a Pandas episode. Got calls from the teacher, we had lots of talks, loss of privileges...nothing worked. So I started giving him 1/2 dose of Aleve in the mornings (works for 8 hrs). Two days later, I got an email from the teacher patting herself and me on the back because we'd finally 'gotten thru' to him. The behaviors stopped. You're forunate to have teachers trying to understand and asking for input. But they also have to control the classroom and they won't always be able to accept the behaviors the way you might at home. Anything you can do to reduce inflammation "should" help and enhance the behavioral plans.

I don't know about myco p, but some strains of strep and lyme have an M protein on their outer surface that looks very very similar. It's speculated that you can get cross-reactivity and a confused or dysfunctional immune system could mistake the two. Apparently, certain proteins found in the basal ganglia are also similar, thus the auto-antibody attack of this tissue. It's speculation and it's been a long time since I was up on this vein of research, but that's the jist. They are also both bacteria that can alter the host environment (suppressing the immune system, creating biofilms) that make it possible to establish chronic infections that are relatively impervious to antibiotics. I suspect the similarity in outer proteins is one element that makes it plausible to researchers that all of these could be part of PANS.

How the heck does ANYONE get Lauriciden into their bodies??? Bought one jar of it 3 yrs ago and tossed the whole thing. DS said no way and even I couldn't force myself to try it. Yes, I know it all matters. I am especially intrigued that DD had a bad response to NAC a few months ago and I've wondered since if it was because of NAC's mucus thinning properties. It's just sooo hard to try something and go thru the pain of wondering if the response is a herx or just a plain old bad response. DD has a je ne sais quoi component to her meltdowns that DS never had - akin to nails on a chalk board. Sometimes she sounds like she is in utter emotional anguish. I absolutely dread - did I say dread - riding something out. I agree - assume films and treat. I would love to have the assurance that we are on solid ground thru testing, but I can unfortunately only afford to test or treat, not both. Well, I have two weeks to wrap my head around this and prepare hubby...

Suzan, Thanks! I always hesitate to wear my heart on my sleeve but am always amazed at the support I receive when I do. Wendy - Thanks very much for the article - Fascinating! Gives me much to think about. He mentions demylination and I wonder what ATP support would do (tho Fry is obviously anti-supplements). A low fat diet isn't in a 7 yr old picky eater's horizon, but I may reconsider the magnesium. I hate to give it up tho, because constipation has always been a chronic problem for her and the mag has made her very regular, way more effective than psyllium or fiber and much easier to get into her. Always things to consider.

Thank you both for the replies. I don't recall what the cost of the Fry test is, but I remember that my eyes bulged and our LLMD knew it wasn't an option for us. Insurance does not cover. I have moved DDs appt up - will see the doc in two weeks. This just sucks.

From the IOCDF website http://www.ocfoundation.org/ Individuals with OCD who might otherwise not be able to visit a specialty OCD clinic will get a chance to experience an intensive 2-day treatment program in conjunction with the annual conference. Dr. Reid Wilson will be running 2-day treatment groups for people with OCD in a Wednesday/Thursday group (July 25-26), and a Sunday/Monday (July 29-30) group. Space is limited to eight patients in each group. Four spots for mental health professionals to observe the training are also available for each group.Dr. Wilson is generously donating 100% of all registration fees back to the IOCDF! The cost is $375. To register, please visit:http://anxieties.com/pdf/registration.pdf. So for anyone who's been interested in some sort of intensive therapy but can't get to Florida, thought this might be another option...

I was doing a little research for a project when I came upon this story. I thought many could relate... What A Difference A Diagnosis Makes I supported a 16 year old girl during a mental health crisis a few months ago and then my youngest son during a medical crisis right after that. What a difference a diagnosis makes! Both were brought to the emergency room. My son was taken immediately into a room to get his vital signs taken; the young lady was stripped of all her possessions and was told there were cameras watching her. She cried. Both needed to report on their past history. During the first hour my son’s medical history was looked over and questions were asked and answered by his parents. The young lady and her father sat in a small locked room. They cried. Both had a diagnosable disorder. During the second hour, my son’s medical history was discussed right away and the nurse wanted to hear about the events that led up to us being there. The 16 year old sat in a small locked room and cried. Both needed to know that they were going to be safe and okay. During the third hour, my son was administered an IV and asked if he needed anything to make him more comfortable. The young lady sat in a small locked room and cried. Both needed to be assessed and a course of treatment needed to be administered. During the next several hours my son was taken in and out of the ER to have tests done. It was determined he needed treatment and was being transferred to the Pedi ICU. The teenage girl sat in a small locked room and cried. Both needed to get healthy so they could go home and get back into the game of life. My son was quietly and respectfully taken for a ride to the Pedi ICU. He was seen by several doctors and nurses and given all the support and treatment he needed. I was invited to help myself to the family kitchen area and make myself something to eat and drink. The nurse came in and made the pull out chair bed for me and gave me a nice pillow and blanket. The young lady was given a glass of water and after 10 hours in a small locked room, her insurance company determined she could get the help she needed. Behind the administrative locked doors came two EMTs and the doctor. They told her to jump right up on the stretcher, right in front of several other youth and family members so they could be take her away. After 12 hours of sitting in a small locked room, she was finally going to get the emergency treatment she needed. She didn’t cry, she ran out of tears. I cried for her. What a difference a diagnosis makes! Parent Professional Advocacy League

We never did any scans. I'll PM you with some details. Have hope.

It seems the cosmic forces doesn't want me to get cocky about finally helping DS9 get to a good place. DD7 has been slipping since OCT when she contracted EBV and now she is at her annual peak of symptoms (every January for the past 3 yrs have been horrid). Motrin helps, inositol helps a little but not as much as it used to. We have looked under the same rocks that were hiding clues for DS but these don't seem to be her ticket to good health. I keep coming back to biofilms, but in the past, she was making gains or holding steady and I didn't want to rock the boat. LLMD wanted to pursue other avenues. But it keeps coming back to me and since other things haven't panned out, I want to look at it more seriously. Her food intake is way down - not OCD, not GERD, just says she isnt' hungry. Does anyone have any biofilm experience to share?

Jen, My son has also had intermittent hearing loss. In 1st and 3rd, he failed his school screening at one specific frequency in both ears - the same frequency each year. In 2nd, he passed with no problems. A follow-up test at the pedi in 1st grade was normal. I'm not saying it's a Pandas thing - my son has or has had other issues (lyme, bartonella, pyroluria). So I don't have any answers. Just thought it might help to know you're not the only one. The symptoms you've described - I've seen them all too. My son has also suffered from symptoms that looked like tardive dyskenesia and had "freezing" seizures. I know that paralyzing fear you're feeling. Wish I had answers instead of just sympathy. My son is in complete remission at the moment, so have hope that you will find answers and be able to put this nightmare behind you. I will keep you in my thoughts and pray for a normal MRI. Laura

You are that far behind on your email!

Not as long as a dozen girls can have an adverse reaction to some likely pathogen and be labelled as hysterical. But hopefully, they too will get to the bottom of things and find a physical cause - and solution - to that one too!

Aspirin helps regulate bipolar moods and the cytokines IL-8 and TNF-alpha are significantly elevated in those with BPD. So let's see, anti-inflamatories = good, inflammation = bad. Asprin might be more effective than psychotropics...Why didn't we think of that? (sorry - a little cynical today).(bolding is mine) =78546"]http://www.clinicalpsychiatrynews.com/index.php?id=2407&cHash=071010&tx_ttnews[tt_news]=78546 Recently reported evidence implicating inflammatory mediators in the pathophysiology of bipolar disorder and major depression have opened the door to testing new agents for treating these psychiatric disorders or slowing their progression. "Bipolar disorder is associated with neuroprogression, and oxidative stress, neurotrophins, and inflammation may underpin this process, Dr. Michael Berk said at the annual Congress of the European College of Neuropsychopharmacology. "Early interventions can potentially improve the outcome" of bipolar disorder, and the new findings give new opportunities to find effective neuroprotective agents, said Dr. Berk, professor and chairman of psychiatry at Deakin University in Geelong, Australia. "We increasingly think there is a systemic biology that underpins" bipolar disorder and potentially other inflammatory diseases. "The brain does not exist in isolation, and we need to understand that pathways similar to those that underpin risks for cardiovascular disorders, stroke, and osteoporosis might also underpin the risk for psychiatric disorders, and that other treatments might be helpful," he said in an interview. Based on this concept, and supported by suggestive results from epidemiologic studies, Dr. Berk said he and his associates are running a prospective, randomized study assessing a role for aspirin in treating bipolar disorder, and that they are seeking funding for a second study to test combined treatment with a statin and aspirin in bipolar disorder patients. "We are only starting to understand the core elements of neuroprogression" in bipolar disorder patients, including the roles of neurogenesis, apoptosis, oxidative stress, and mitochondrial energy generation. "If we accept that these are determining long-term outcomes, it gives us a diversity of novel treatments we can begin to look at that might have a potential impact on these underlying processes. I think this is one of the most hopeful areas of psychiatry." Evidence of a role for inflammation in bipolar disorder and major depression includes the finding by Dr. Berk and his associates that women who received statin treatment had about a 2% incidence of newly diagnosed major depressive disorder during 10 years of follow-up, significantly less than the 10% incidence rate among women who did not receive a statin, in a nonrandomized study that controlled for age (Psychother. Psychosom. 2010;79:323-5). In another study, Dr. Berk and his associates found a link between elevated serum levels of high sensitivity C-reactive protein (hsCRP) and the incidence of major depressive disorder. They followed 644 randomly selected women aged 20-84 and with no history of depression at baseline for 10 years. During follow-up, the rate of new-onset major depressive disorder rose by a statistically significant 44% for each one standard deviation increase in the log-transformed level of serum hsCRP, after adjustment for baseline differences in weight, smoking history, and use of nonsteroidal anti-inflammatory drugs (Br. J. Psychiatry 2010;197:372-7). Also, a 2006 report from Irish researchers had results from a study of the plasma levels of five different cytokines in 42 people aged 1-68, including nine with bipolar affective disorder in the depressive phase, 12 with bipolar affective disorder in the manic phase, and 21 control people with no personal or family history of a mood disorder. The results showed significantly elevated plasma levels of interleukin-8 and tumor necrosis factor-α in both subgroups of bipolar disorder patients studied compared with the controls (J. Affective Disorders 2006;90:263-7).

Does USF still have their skype program to help people who can't travel, whether due to cost or OCD fears? If you have the info or a link or a contact number, can you post it?

I don't know if this will work for you DD, but with my kids, they named their OCD/fear - DS had "stupid guy" and DD has "worry fairies". Even tho DS has now outgrown the name and just calls it OCD, he grasps the idea of naming/externalizing the OCD so that it's a third party - an enemy that is not part of the real "him". Anyway, when DD is fighting a fairy and seems to be losing the battle, she'll plead with me to give in, or to do the fighting for her (which is of course impossible). I'll tell her that we both know the fairy is just trying to scare DD into giving the fairy all of her attention and I will not participate in the OCD fear because I will not help the fairy win. I'm not being mean by insisting DD do something scary - I'm telling the fairy no. It's not always successful, but it's a mindset I adopt that helps me not give in to the tears and fears. The only way to overcome the fear is to stand up to it. Give in and it just gets bigger. Tell it no and you feel empowered. So for the store, you let her know you won't let some fairy control your life. The fairy is a bully. Now, it also has to be manageable steps. Maybe it's only walking into the store and then immediately leaving and that's your success for the day. Make sure you celebrate it of that was the agreed upon goal. If she fails, tomorrow's goal can be walking to the entrance but staying outside - maybe tapping the "open door" sensor with her foot, then leaving. DCMom is the resident expert so she may have better step by step plans. But making the OCD a third person bully has helped my kids. On a separate note - have you looked into inositol or SAMe or NAC? Would they be things to consider? Also, not sure if your DD can do motrin, given her GI sensitivity, but if she can, give motrin 30-45 min before you go to the store. Motrin effects my kids in dramatic ways and makes things much more bearable for everyone. Thinking of you.

P41 is the band that tests for antibodies to any bacteria that has a tail (flagella). It is not lyme specific. H Pylori (the bacteria that causes ulcers), syphilis, lyme and other bacteria have this feature. (Strep does not). Generally, IgM means recent exposure and IgG means more time has elapsed since exposure. But that's not carved in stone. Under the helpful threads section of this forum, you can find a few articles that explain the significance of each band. The problem is that the standard western blot labs use CDC criteria and look at certain bands of antibodies. I don't recall exactly which ones, so for illustration, lets say they look at bands A, B, C, and D. They do not Look for Bands E or F, which are unique to lyme. (long story why they don't look for these bands - I will post only if you care). Igenex is a lab that does look for bands E and F as well as bands A, B, G, H and J. They give you a different picture. So if you haven't used a lab that looks for bands that are specific for lyme, you can't really say whether it's a negative result or not. Elsewhere in the recent topics is a thread about a new lab test that doesn't look for antibodies at all but instead cultures living lyme spirochetes from the blood sample. This eliminates the guess work. If I had the funds and were new to lyme, this is the test I'd do first.

For my son, IVIG (and plasmapheresis, prednisone, 2 yrs of abx) and treatment for lyme disease were not "the" answer. Many of these things helped but not permanently. It doesn't mean these treatments don't help and don't get some kids permanently better. But for my son, it meant there was an underlying condition we hadn't yet identified and until that got fixed, everything else was a band-aid. My son's answer was a genetic zinc deficiency known as pyroluria. My daughter's issues are different and her answers will be different. I don't know that you should be discouraged by stories of IVIG not being a silver bullet. It is a tool. Something that makes some kids much better off and one that helps others to lesser degrees or not at all. It depends on many factors, including what kind of infection, how long someone's been sick, what their overall health is, their diet, their genetics, their environment (do they have mold or metals exposure), etc. When someone posts, try to remember that the whole picture doesn't get conveyed. This isn't a one-size fits all solution. You need to go through a methodical process of rule-outs and treatment trials and adjust course as you go. This is a complex ball of string. So I wouldn't discourage you from seeing if IVIG helped. I would just go in aware that you could have a range of outcomes. And remember that once your child gets well, you eventually leave this forum. The ones who remain have the more complicated stories. So you're seeing a skewed sampling of experiences.

I'm really sorry you feel so stuck. The combo abx - has it always been the same two abx or have you tried different combos? My DS was on zith+augmentin which did nothing but then went on zith+bactrim which helped a lot and at one point, zith+bactrim+omnicef which brought big changes. So sometimes you have to experiment. I can respect your doubts about lyme. And about continuing IVIG. You need to put your resources where you think you'll see results. Would you consider seeing a DAN or integrative doctor or an LLMD who treats more than lyme? I know it can feel like stepping into Wonderland, where you're suddenly on wild goose chases. I get that. But our experiences have been positive in terms of finding someone who looks at a broad range of issues and treatment options. If you're at the end of your rope, it's something to consider. I hope your discouragement is short lived.

It's called fear One other option I just thought of - some LLMDs using abx pulsing to fight cysts instead of tindamax/flagyl. You go off abx for several weeks. This removes the threat the Bb sense and they come out of cyst form. Then you ambush them with a few weeks of abx. The survivors go back into cysts. So you go off abx again and they re-emerge. Then you ambush again. You pulse like this for several cycles. The first few cycles can be hard but it apparently works really well. My LLMD didn't do this much but then inherited patients from a guy who closed his practice. This guy used pulsing a lot and so our LLMD kept those patients on the protocol and he now uses it quite a bit. So if you're still uneasy about the tindamax, pulsing with "regular" abx is another option.

I had the same concerns last spring before we started on tindamax. Totally freaked. These studies helped... http://www.ncbi.nlm.nih.gov/pubmed/9502459 http://www.cancernetwork.com/display/article/10165/66503 Unfortunately, tindamax is the best abx out there for cysts (besides flagyl, which carries the same or more risk). Hope these articles help a little.

IVIG (we did only one) was a very negative experience for my son (7 at the time). He regressed horribly in many ways. After 10 weeks, he did pull out of the nose dive and stabilized. But I would not say we saw any gains at all. The one positive that came out of it was that both Pandas doctors we were seeing agreed that there had to be a reason - an ongoing infection - behind his response. They both agreed we should look into lyme and eventually we found other things (methylation, pyroluria) that, now treated, have made my son healthier than I think he's ever been in his life. It wasn't just Pandas, just lyme, but a perfect storm of several factors. IVIG wasn't going to fix these factors for him. So it wasn't part of our answer. That said, I don't think IVIG did any lasting harm (except maybe for the lasting PTSD in mom). And we seem to be in a very small minority. So I don't speak up to dissuade you. As others have said, it can be a very positive experience.