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Posts posted by LNN

  1. DD had been on low dose naltrexone for 10 months. Saw improvement in her depression within a few days and in her sensory struggles within a week. We started at 2.5 mg and then moved up to 4 mg. I stopped it over the summer, thinking it wasn't helping anymore, but added it back about 2 months later. There is too much going on with her immune system and I think the LDN helps bring things down a notch.


    Here's a good article https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3962576/

    you can find additional info at http://www.lowdosenaltrexone.org/

  2. If you have Lyme and are having a PANS set of symptoms, I would highly recommend seeing a Lyme-literate MD (LLMD). By treating Lyme - often with multiple antibiotics at the same time - you can often alleviate the Pandas/Pans symptoms. I'm not familiar with any LLMDs in your area but you can go to www.lymenet.com and click on the upper left link called "flash discussion" - which will bring you to a page where you can find a link called "seeking doctors". There, you can post and people in your area can make recommendations. http://flash.lymenet.org/scripts/ultimatebb.cgi


    You can also send an email to www.ILADS.org and they will email you recommendations for doctors in your state.


    Finally, you may want to search this forum for lyme discussions and also read the pinned threads at the top of the Pandas forum page called "helpful lyme discussions" or somethng like that - for some good starting materials.

  3. I hadn't seen this article before - thanks for posting. I don't have solid answers to your good questions - only personal experience with one 1.5 g/kg infusion for my son, who had Lyme, which was undiagnosed at the time of his infusion. It was his severely negative, and prolonged, reaction to IVIG that led us to find Lyme, so a silver lining in an otherwise horrible experience. So thru my response, realize that I am biased and not a fan of IVIG as a treatment option unless the child has been thoroughly tested for triggers and just about every other treatment option has been exhausted.


    To my knowledge, the rationale for every 8 weeks doesn't come from research. Rather, it started back in '09-'10 when Pandas families were contacting Dr Leckman at Yale and looking for ways to get IVIG. He knew that Dr B had an immunology practice close by and did IVIG, so he referred the families to Dr B and Dr B started learning about Pandas. At the time, there were only a few doctors known to our community that we could turn to for help. So families started banging down his door. Somewhere in this early period, he started recommending that the procedure be done every 8 weeks. I can't say why he advocated this. I can only say from personal experience that it wasn't based on waiting to see how the child responded to the first infusion. It was something he felt should be done every 8 weeks regardless of response. In contrast, Dr K, Dr L and Swedo were all recommending only one infusion and then monitoring for at least 3-6 months before deciding if another infusion was warranted. Was either position rooted in research? Probably not. There was very little research on Pandas and only one study on Pandas and IVIG. It was an educated guess as far as I can tell, for each position.


    For other autoimmune diseases where 1.5g/kg IVIG is used (e.g. Hashimoto's), only one infusion is generally done. Supporters of Dr B feel that his approach is right and has helped their children a great deal. Skeptics point to disappointing results from IVIG studies and a potential profit motive for such frequent treatments. There still doesn't seem to be enough research to support one approach over the other, or even to support IVIG at all. It surely helps some kids, and in some cases, dramatically. In other cases, it seems to do nothing or make things worse.


    Maybe this was the thing that prompted the study you posted. But I have two, non-scientific, biased quibbles with this paper. First, the paper cites 100% improvement. What does improvement mean? I know it says it's based on clinician assessment. But this obviously lends itself to bias - not only is it impossible to assess a Pandas child in a 20 minute visit, there is also inherent bias in a parent's reports. When I spent $$$ on plasmapheresis for my son (prior to IVIG), I wanted so badly for it to work. I minimized the negatives and hyper-focused on any little thing that gave me hope. So I'm not sure how much stock I can put into 100% improvement.


    Second, the paper suggests that IG levels are a good predictor of outcome. I would also wonder whether specific triggers/infections influenced the outcome. Do kids with Lyme or mycoplasma react more poorly than those with a strep trigger? Does it matter whether the child has an infection that's resolved or if it's still active? What other treatments were being given during the 12 months? If antibiotics or steroids or CBT were being used, did these influence outcome? In other words, would the kids who got better have gotten better regardless of IVIG?


    As I started out saying, I don't personally support IVIG as a therapy but I do recognize that it's been very helpful for some kids. I just don't know that this paper, or the NIMH study, make the picture clear as to what dose and what frequency might be helpful, and for which subset of kids.


    So to your question - I don't think anyone knows if 1 g/kg would be better, worse or the same as 1.5 g/kg. But if you do proceed, my personal recommendation would be to do one treatment and then listen to the body before deciding whether a second or third infusion is needed. It's a very personal - and lonely - journey.

  4. She's on azith + Bactrim - 2 abx that have worked well for her in the past. But this combo may not be the right one for other people. We use it because DD is allergic to many, many abx, so we're very limited in our options. Would love to hear your experiences with mino. It's one that's on my radar when it comes time to rotate but I've hesitated because I've come across some side effects that seem to plague girls more than boys (can't recall what at the moment - just remember crossing it off my list last year after some research).


    I do sympathize with that feeling of hanging onto your sanity by the most slender of threads. I had what I affectionately call my nervous breakdown a few years ago when DS was diagnosed with lyme, my mom died and I was laid off all within 3 weeks. I shut down emotionally for about 6 months and lived life by going thru the motions. It was an alienating and scary time. You may want to see if your town has a Youth Service Bureau. In our town, they have therapists who are just shy of receiving their LMFT licenses (who need clinical hours) and they provide free family and individual counseling, and are supervised by a licensed therapist. Ours was the one who first suggested Pandas to us - I'd never heard of it before then. It's a free way to have someone to talk to and just be a coach, cheerleader or shoulder to lean on.


    One thought on the aggression - my DD has gone thru periods of this. I promise myself not to get sucked in to the drama, but sometimes I would just snap in the heat of the moment and react poorly. This was especially hard when we first started the re-feeding process and the stakes were so high. Our current therapist helped me see that DD has 3 coping mechanisms. First, she'll try to avoid/flee. If that doesn't work, she'll fight. If that fails, she'll freeze/faint (I.e. crumple into a ball and sob). Once she's exhausted all 3, she'll then become compliant and face her fear. But the fight portion can be brutal. The therapist pointed out that DD gets something out of this exchange - some sort of reward. And that reward is avoidance. As long as we're fighting, she isn't having to face the thing she's trying to avoid. It's a delay tactic. So now when she starts to push my buttons, I just focus on the fact that she's trying to avoid, and I tune out all the provocative things she does and says. And sometimes I realize the only way to get past the fight stage is to go thru it. So I let her fight - and try my absolute hardest not to do my portion of the dance/script that she's hoping to provoke. Once her attempts fail, we can move forward. I can imagine how ugly your fights get because ours get ugly too (and include things you don't want to put in print). I don't always succeed. But seeing her provocations as bait instead of insults helps me step back and take the higher road.


    Hold on. This isn't forever.

  5. Beerae - right there with you re:not wanting to use SSRIs because it feels like you can never stop. But when my DD11 restricted her eating to 350 cal/day in Aug and couldn't function due to panic attacks, I relented. It seemed cruel to withhold something that had the potential to take the edge off such intense fear and pain.


    She started on Lexapro 5mg. It had the immediate effect of making her tired at night - and since her anxiety was keeping her up until 1 am and not allowing her to sleep after I woke for work at 5:30am, this in itself was a benefit. By making her tired, it also significantly cut down on panic attacks, since 90% of them happened at bedtime. But that said, I don't think it made a dent in the OCD, general anxiety or any other issues. She continued to fall off the cliff with other symptoms and continued to lose a dangerous amount of weight. Thankfully, we saw Dr M and he put her on steroids and 2 bx and within 36 hrs, she was a different kid - in a really good way.


    Because she still has issues, albeit far more manageable, I find myself in a position where I don't dare pull the Lexapro, or anything else, until she's back to her normal weight and much more steady. So yes, we are sort of stuck with it, even if it's not the thing that turned her around. I do wish I'd done things in a different order and avoided putting the SSRI in the mix, since it does complicate the picture. But...here we are and even if all it's doing is helping with sleep, that's not a bad thing. But once things have been stable for some time, probably next spring/summer, the SSRI will probably be the first thing I look to remove.


    You need to do what your gut tells you. If it doesn't help, you'll know you tried. If it does, then that's a good thing. But I totally get your concerns.

  6. Agree - wait on Igenex results. If they are anything less than whistle-clean, I'd recommend Dr M in central CT - he treats both Pans and Lyme and also treats Marcons - antibiotic-resistant staph infections in the sinuses. We've been with him for years for both kids (started with Dr L, then Dr B - neither could get to the bottom of things - my kids were just too complicated). My son has been symptom-free and off all meds for 3+ yrs. Dr M is currently helping my daughter. He's integrative - uses both antibiotics and supplements and a variety of options depending on your needs and medical preferences. His wife is a homeopath in the same practice if that's your leaning now or in the future. PM me if you want his contact info.

  7. My DD 11 is currently struggling with Pans-induced anorexia and ARFID, in addition to scrupulosity OCD and intrusive thoughts. Because of the ARFID, re-feeding is really difficult and whenever we insist on introducing a new food, OCD rears its ugly head and her fear of throwing up makes her go thru three stages of fear = 1. Flight - her initial reaction to an anxiety situation is to try to flee. When we won't let her leave the table, she goes into 2. Fight - she fights like a trapped wild animal , physically and verbally. Then when she's restrained and becomes exhausted, she goes into 3. Freeze - where she'll curl up into a ball and cry. These are the three primal responses we all have to fear. She seems to need to go thru all three phases before she then becomes compliant and will force her way thru a new food that's causing her to gag on every bite. Once she gets it all down. that food starts to lose its power over her. The next day, it goes down a little easier and by the 4th or 5th day, she's ok eating it like she used to.


    The rage you're seeing may be OCD related. Preventing a ritual, not giving into a fear, or being perceived by the OCD as a threat to its power will induce rage in many Pans kids. If one parent is more likely to stand up to OCD, I can see how that could induce an almost phobic avoidance or fear of that parent. I can't tell you how my DD's anxiety skyrockets as meal time (or clothes shopping) approaches, and since I'm the one who's most likely to not negotiate, I'm the one who bears the brunt of the fight phase of things.


    You might like the book "Talking back to OCD" by John March - a good way to get some perspective for tweens and parents.

  8. Sorry to welcome you back. I don't know of seizures being Pandas/Pans specifically, but I do know of a few moms on a FB support group who deal with seizures as a co-morbid issue. My DD11 suffered mycoclonic spasms for upward of 10 hrs/day last spring as a result of MARCONS (antibiotic-resistant staph infection in sinuses) and exposure to mold in her classroom. They resolved over 2 months treatment with a nebulized formula of an antibiotic (chosen based on sensitivity testing of a nasal culture - in her case, clindamycin) plus itraconozole (anti-fungal) plus edta plus mupricin.


    One other option is to investigate vagal transcutaneous electronic nerve stimulation (v-tens) - using a tens device attached to the tragus past of the outer ear to stimulate the vagus nerve. Tens stimulation is sometimes used for epilepsy but is surgically attached - a $20K procedure. Several researchers have done small studies using a small tens device (available online for $50) attaching it to the outer ear where there's a small "tributary" offshoot of the vagus nerve to treat fibromyalgia (which for some, may be an infection of the vagus nerve).


    It's also possible the Lyme was never fully eradicated. Neuro-Lyme infecting the central nervous system can cause seizures. If you're able, you may want to consult with an LLMD (lyme-literate MD) who'd be willing to investigate infection-based triggers. Many LLMDs are now familiar with Pandas/Pans.


    I'm sorry you're back in a bad place. I know how scary it can be and how alone it can make you feel.

  9. I do think stopping the LDN made things worse. But not from a dependency. All the research suggests there's no addictive properties and no need to tier down when stopping (tho I did, just to be safe). I think things got worse because it was helping and I didn't realize just how much. We haven't been able to figure out the "why" behind my DD's issues and things have stayed ramped up as a result. The LDN helped keep the inflammation lower and that helped keep her symptoms more manageable. I saw no side effects. So it's back on board for our foreseeable future as we keep hunting down clues.

  10. We've been using it for my DD for neuropathic pain. She has Pans but for the past 10 months, her symptoms haven't been your typical presentation. Two months ago, I stopped it, trying to get down to a lean daily regimen. Since then, her anxiety has skyrocketed and led to nightly panic attacks. I re-started the LDN a few days ago and saw immediate improvements. We are still searching for the cause of it all - but the LDN has helped a lot. I know at least a dozen families who are finding relief using it - not a cure, but a big help.


    This is another good article...



  11. I found these videos and articles to be really helpful in changing my perspective on fear




    plus youtube videos of Stephen Porges discussing polyvagal theory


    and Paul Levine's Somatic Experience interview on how he uses the polyvagal theory to treat PTSD




    It's a way to understand the physical reactions the body has to stress and how to help it get "unstuck" . I'm also looking into using vagal transcutaneous electronic nerve stimulation (v-tens) to treat anxiety and depression triggered by vagus nerve hyperactivity.





  12. My daughter tested negative and she does not have Lyme (we tested to rule out/make certain - we didn't think it would be positive but were in the process of ruling things out to make sure we didn't overlook something). She had been tested a few years ago and was iffy - she was treated for 8 months. But this time around, everything was negative.


    I know people sometimes suspect Igenex is always positive, since that's a story you hear quite a bit (e.g. I was negative on Labcorp but positive with Igenex). Yes, some people do get negatives from Igenex. The lab isn't skewing their results to fit a certain narrative - at least not in my experience.

  13. Philamom - how are you?!


    I've never used celebrex for Pandas, but my dad uses it for arthritis. When it went generic, he says he saw a difference in effectiveness and is wanting his doctor to insist on the real deal, if medicare will pay for it. But he also started an OTC supplement called OsteoBiflex, which he says works as good as celebrex. I recently started having inflammation in my hands and it does help a lot (of course, I keep trying to do intense home repairs and aggravating the situation). It's main ingredient is boswellia, an herb used for centuries for inflammation.


    So you could try either boswellia or this https://www.amazon.com/Osteo-Bi-Flex-Triple-Strength-Tablets/dp/B00006FE3S/ref=sr_1_1_a_it?ie=UTF8&qid=1470600528&sr=8-1&keywords=osteo+biflex


    Note - there seem to be several varieties of this - one contains MSM, which I need to avoid due to a CBS mutation. So compare the various options. I use the one that only has boswellia, chondriotin and glucosamine.


    Hope things are better?

  14. This happened to my daughter - it passed. Showed the video to our Pans doctor but he didn't have any clear explanation. It was accompanied by myoclonus spasms. In my daughter's case, the trigger was mold exposure. Nebulized anti-fungal treatments slowly got rid of it.


    I'd take a video and show it to your doctor. It's likely a sign of nervous system inflammation and cranial nerve issues. You can try anti-inflammatories for the time being. But I'm not sure the ER will do much except (maybe) run some tests and tells you to follow up with your doctor tomorrow. My own experiences with the ER is that they most focus on saving your life. Non-life threatening issues get stabilized and then sent home.

  15. Mood issues weren't a problem for my Lyme son. Anger, yes. Anxiety, yes. But not mood issues in the way I think of them. Rifampin helped right away - I didn't see significant herxing. But we didn't introduce it until we were well into Lyme treatment - maybe a year or so. So maybe the worst was behind us at that point regardless of what was introduced. But it did help a lot with cognition.


    Maybe start school before adding it, then add it in 3-4 weeks into the year. That way, the jitters and emotional adjustments that are bound to happen simply from the start of school will have had a chance to settle down and you'll be better able to gauge any reactions.

  16. There are no "Pans" genes that are recognized by the medical community. There may be some that Dr T feels are more common among his patients, but from everything I've gathered from families who've done this testing, the results can be underwhelming and don't seem to materially change his treatment plans. I know Courtagen at one point had some sort of payment agreement where you would pay a flat amount and they would try to be reimbursed by insurance for the balance. But I don't know if that's still in place. IMO, unless its a life/death situation, no test is worth $36K.


    Dr T seems very focused on mitochondrial disease and its role in Pans. I know some patients are passionately loyal to him and feel he's been very helpful. But I don't know that he has any greater success rate than other doctors (none of whom do Courtagen testing or even pay attention to 23andMe data).


    I personally feel that the key to getting well is to correctly identify your trigger(s) and treat that trigger in the manner that works for you. Sometimes that's an infection. Sometimes it's mold or allergies or diet or methylation. Sometimes treatment means one antibiotic, or combos of antibiotics or surgical procedures or dietary supplements/eliminations or herbal antibiotics. There is no one path. The secret seems to be in working with a doctor who matches your philosophy and tends to look at the things that fall into your personal Venn diagram. For example, I don't think he looks for mold issues. For my kids, this was a huge factor and working with Dr T would've been unsuccessful for us. But if mitochondrial issues are one of your factors, you might find great success in working with him. So this isn't a slam against any doctor. It's a dating process. You need to work with the practitioner who's most likely to explore the things that are particular to your situation.


    It sounds like your meeting was a good match so far. So I think it's reasonable to ask his office for an explanation of why this test and what happens if you can't or won't pay for it. IMO, it's not the best use of limited funds.

  17. In addition to Pandas/Pans, which in my kids causes an extreme change in the levels of their anxiety, moods, behaviors...both kids have been helped on a daily (as in all the days they aren't suffering from a Pans flare or illness) from addressing methylation problems.


    Methylation is the chemical process your body's cells go thru a million times per minute, where the body takes nutrients and converts them into chemicals the body needs. Each chemical change is regulated by certain genes, and if those genes don't work correctly (i.e. if they have a mutation), then the chemical changes don't happen as effectively as they should. All of us have genetic mutations. But some people have mutations that impact mental health and if you know what those mutations are, you can sometimes use supplements or changes in diet as a therapeutic "crutch" or aid to work around the "disability".


    For example, a lot of Pans kids have issues with a gene called COMT - which is one of the genes that controls how quickly the body uses up (degrades) adrenaline. If your mutation makes this process happen slower than "normal" then your body stays flooded with adrenaline longer than the people around you, resulting in anxiety or anger issues. This is called the "warrior/worrier" gene. Because you get one gene from each parent, you can have one or two abnormalities - which impacts the severity of the effects. So if you are COMT -/- you received a "normal" COMT gene from each parent. If you are COMT +/+ you received a "mutated" gene from each parent and you might eventually struggle with anxiety disorders or defiance/anger issues - or both. One of the things that helps the COMT gene work is niacin (vitamin B3). When you have a COMT deficiency, taking extra niacin can help your handicapped COMT gene work a little better and you'll get rid of excess adrenaline a little quicker, helping your mood return to stable sooner.


    Another gene that impacts mental health is MTHFR - which affects serotonin and dopamine levels. Vitamins B9 (folate) and B12 (and to some extent Vitamin B2/riboflavin) impact how well this gene works. There are about 30 genes that impact this cycle - loosely called the methylation cycle tho it's technically 4 cycles (Krebs/BH4/folate/methionine). Knowing the status of each of these genes allows you to tweak what goes into the body so you can work around roadblocks. (tho having a mutation doesn't mean that mutation is active or "expressing" - but that's for another day).


    It's a complex process. But the first step is to do the testing. Most people use 23andMe.com to do a $199 spit test. I think ancestry.com offers something similar and you can get genetic testing thru other companies and commercial labs like Quest - but for more money. I'm not sure if 23andMe has released a kit for children who can't yet spit - at one point they were working on a swab kit where you could swab the inside of the cheek to get a saliva sample. But not sure if it's available yet. The pioneer in this field is Amy Yasko and her company - holistic health - may have something for babies - her tests are in the $500 range I think.


    If it's something that resonates, let me know and I can post some links to give you some background.

  18. My daughter got very ill from mold exposure in her school building. The congestion led to a chronic sinus infection that Shoemaker (www.survivingmold.com) calls MARCONS (multiple antibiotic-resistant coagulase-negative staphoccocus). 8 months of oral and nebulized antibiotics and a nebulized anti-fungal kept it in check (sometimes) but never eradicated it. Since DD is allergic to many abx, we turned to herbal antibiotics and 3 months of alchornea (10 drops 3x/day) did the trick.


    Here's info on it http://tipsdiscover.com/health/systemic-herbal-antibiotics-alchornea/



    It has a very earthy taste, so we put it into an empty gel cap and she swallowed it w/in the first minute so it didn't dissolve. No taste that way. You'll see that it's also used for sickle cell anemia - it helps the red blood cells regain their shape somehow, which helps them carry more oxygen. While on it, my daughter felt more energy - maybe from the infection being treated but it also seemed to somehow treat the fatigue in a different way. Hard to explain.


    I am not pushing the Lyme - but do want to share that I dismissed the idea for my son for 2 years - he had a negative Quest Lyme test (which I now know isn't very reliable) and a very positive correlation to strep infections. But he in fact had Lyme plus strep induced Pandas. My daughter also has Pandas but not Lyme - so yes, I do believe there's a genetic issue that makes their BBB's "breachable" but Pandas and Lyme aren't mutually exclusive and one kid in the family can have Lyme + Pandas and the other can have "just" Pandas. I get the money issue. But one thing you could try is to treat it "as if" it were a Lyme infection by using combo abx - one extra-cellular like augmentin, omnicef... and one intra-cellular like azithromycin. This was the core of my Lyme son's regimen for 2 yrs. If you saw improvement using more than one abx at a time, who cares what you label it - it might be a treatment that could help. If you don't have a doctor on board with using more than one abx at a time, you could do a prescription abx plus herbal abx, like alchornea, sida acuta, cryptolepis (all discussed in Stephen Buhner's lyme books).


    As I said - not pushing. I hated when people kept asking me about Lyme. Only suggesting that you can have both strep and Lyme infections and that combo abx might be worth trying, even without additional testing.

  19. What is RNP?


    Yes, my DD had a positive ANA, with a nucleolar pattern, which can suggest an attack on muscles, particularly upper arms and legs. This matched her intermittent loss of her ability to walk - she couldn't support her own weight. She was put on antibiotics - clindamycin intially and then Alchornea - an herbal antibiotic - for several months to treat a chronic sinus infection (staph and fungal) and when we re-tested, she had re-gained her muscle strength and her ANA was normal again. Alchornea is now my go-to treatment - it worked far better than clindamycin and didn't mess up her gut.


    I know several Pandas - mostly but not exclusively girls - who've had positive ANAs that returned to normal once their flares ended. One continued to have positive ANA but also had Lyme.

  20. Yes, I think our journey would've been much shorter if we'd found the Lyme early on. You're very lucky to have a doctor who's willing to diagnose Pandas, do the Cunningham Panel and order Lyme & co-infections testing. Hopefully, the infections and inflammation will be less severe than it was for my son. My one word of advice is to be sure you're working with a doctor who specializes in Lyme first, not Pandas first. Lyme and co-infections can be tricky and sometimes require that you look beyond the obvious.


    When my son did IVIG, we didn't know he had Lyme. He had a horrible, horrible reaction - 10 weeks of absolute . It seems that his immune system was so weak from being sick that when we infused him with mega doses of door antibodies, he suffered a major herxheimer reaction and his symptoms became far worse, particularly his rages and emotional dysregulation. It was too much too soon. 6 years later and I still get a knot in my stomach when I think back to it. Ironically, it was his horrible response to IVIG that led us to discover the Lyme. But to do it again, no, I would not do IVIG to treat Lyme (we only did one treatment). There are parents who've done this and felt it did help, after the initial herxing. But I personally can't recommend it. I think you can heal in a far gentler manner and in a way that brings less inflammation and less short term damage - both from inflammation and from the emotional scars it can leave. Again - my experience only and others have had different results.


    Steroids - we did them three times - twice they helped immensely. This was before my son's T&A and while strep was part of his illness. The third time, the strep wasn't the issue and the Lyme was, and it didn't give us much relief. The steroids didn't impact his tics one way or the other. But they did help with cognition and emotions. Unfortunately, the benefits didn't last. Within a month, we were back on the roller coaster. It showed that his issues were from inflammation, and it was great to get a little relief. But it was hard to watch it all disappear once we stopped. In our case, a positive response to steroids didn't equate to a positive IVIG experience.


    Re: your strep carrier son - yes, I'd do a T&A if you can. The fact that he can be infected and no one would know it will just make it harder to interpret your other son's responses to treatments. Just one unnecessary hurdle that can be easily removed, IMO. My son's tics diminished drastically after his T&A - his tonsils were chronically infected.


    From what you've shared, I'm guessing you're being treated by a Pandas specialist who uses bi-monthly IVIG as part of his protocol. Some families with Lyme have felt this was beneficial. Some have moved on to doctors who specialize in Lyme, including us. It depends on your personal feelings about how to tackle this problem and how you feel about integrative medicine and how you feel about the doctor and his/her staff. There's no "right" answer. Just answers that are right for you.

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