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Posts posted by LNN

  1. Any abx given only once a week would be very ineffective and IMO would greatly increase the risk of abx resistance. Let's say your DD gets strep again and takes one day of amox. Only a small portion of the strep bacteria would be killed and the remainder would learn how to resistant the mechanisms of amox. That;s why when you have an infection, they tell you to finish the entire course even if you feel better. Any survivors pass on survivor knowledge to their offspring.


    Once your child is symptom-free, I think the most effective prophylactic schedule is this:

    Days 1-5 of the month, Azith daily

    Day 6, 8, 10 (even days) azith (which has a half life of 36 hrs vs. Amox which has a half life of 2? hrs)

    Then at the start of the next month, do 5 days straight again, then every other day for the rest of the month.


    The 5 days at the start of the month actually stays effective for the 1st 10 days (which is how a z pak gives you the same coverage as 10 days of amox) and would theoretically kill any simmering infections. Then the every other day gives you sustained coverage for the rest of the month.


    Doing abx only once a week or even twice a week just seems like begging for any infection to become resistant to that abx.


    Alternatively, you can read up on herbal antibiotics and use them on an as-needed basis. I've found that giving herbal tinctures at the first suspicion of illness nips things in the bud (I still give the herbs for several days after symptoms subside) and they don't seem to cause the gut damage abx can cause.

  2. In general, an area that' smaller than 4'x4 can be remediated without professional mold remediators - but you need to enclose the area with thick plastic sheets to prevent spores from spreading and need to plastic wrap the materials (carpet, wood, drywall) that need to be removed, prior taking those materials out of that area. Ideally, the materials would go out thru the window instead out thru the house. You'd also want workers to minimize travel into other areas of the home (maybe have them walk on paper or drop cloths that can be thrown away) so they don't track spores into other areas. If this is black mold - aspergillus or stachybotrus - you need to treat it like a toxic spill. I would personally be there to oversee the work.


    Not everyone has the same level of sensitivity - both of my kids have struggled with mold exposures, both have HLA DR gene for mold sensitivity. But my son has a higher tolerance and only develops tics and moderate brain fog/muscle pain. My daughter becomes severely debilitated. Without knowing your son's tolerance, I'd be as cautious as practical.

  3. From personal experience, I can say it's really important to test your genetics before you treat methylation. Guessing is not a good idea.

    To start, read POst #18 here http://latitudes.org/forums/index.php?showtopic=3928&page=2


    If interpreting is too overwhelming, there's a company called Livewello that helps with interpretations, reports. I've never used them but if you search the forum, you can find posts from people who have and maybe PM them for their experiences. You can also PM me if you'd like more links or experiences.


    Hang in there. Just like Thomas Merton wrote about there being many paths up the mountain of faith, there are several paths toward health. We all just need to find the one that works for us. It isn't always the same path for everyone. But keep at it and you'll find the one for you.

  4. There are two things you may want to look into - the first is methylation - a chemical process the body uses to turn raw nutrients (vitamins and minerals) into energy and neurotransmitters. Finding my kids' genetic roadblocks and adjusting supplements (B vitamins and zinc/copper in their cases) made huge improvements in mood regulation regardless of infection or good health. There are lots of posts and links (many from me) on the forum on the subject.


    The second is using herbs in place of antibiotics. Stephen Buhner is an herbalist who's written many books on using herbal antibiotics and herbal antivirals - especially for treating chronic infections. My DD is allergic to many antibiotics so we've been using herbs with some really positive results - and herbs dont damage the gut the way pharmaceutical antibiotics do. I defer to RowingMom as the resident herbal expert but Alchornea has been an awesome herb for us.

  5. MyLightHouse - I highly encourage you to get Stephen Buhner's book on treating mycoplasma http://www.amazon.com/Healing-Lyme-Disease-Coinfections-Complementary/dp/1620550083/ref=sr_1_sc_1?ie=UTF8&qid=1459425492&sr=8-1-spell&keywords=bu+bartonella


    He explains why it can be so hard to eradicate and offers great herbal options that don't destroy gut bacteria. I'm a Pans veteran due to my oldest child's issues 8 yrs ago, but now my younger child is Pans as well. Because she's allergic to most antibiotics, I've been turning to herbs - with much success. Herbs generally have strong tastes, but we use tinctures and put them into empty gel capsules, and then my daughter swallows the capsules without tasting anything. (but you need to take the capsule quickly or the liquid tincture melts the capsule).


    Johnsmom - I will say something "controversial" in that I've personally come to believe that auto-immune diseases are not cases where the immune system has become confused. I think the body is wiser that western medicine gives credit. I don't think the body is inclined to waste valuable resources like macrophages or to cause self-harm with inflammation without a good reason. Recent research has looked at cases of lupus where the primary organ being attacked was the GI system and they found that these cases went into "remission" with antibiotics. They found DNA of infectious bacteria in the gut and think the immune system was (correctly IMO) attacking that DNA as an invader. Whether the DNA was just remnants of past infection or from active infection or from a biofilm colony where DNA of multiple microbes (including self) co-mingle, the study didn't say. But my take away was that the immune system wasn't confused. It was doing what it's supposed to do - not attacking self but attacking an invader doctors hadn't previously identified. And abx helped get rid of that invader.


    Now, I'm not sure if abx would be a good thing or a bad thing for colitis. But maybe herbs? Or maybe a stool test to look for bacterial infections or yeast? It's possible that the gut inflammation is a response to something that shouldn't be there. So herbal abx or antifungals (e.g. berberine or capryl) would support the immune system's efforts rather than suppressing it.


    As I said, I realize this isn't a commonly held view and I don't mean to start any arguments. Absolutely support your child however you feel is best. Just tossing out a different perspective - as I know there have been times people challenged my thinking and a light bulb went off. Best of luck!

  6. Not sure about nose bleeds. But DD was having problems with spontaneous bruising on her inner arms when she was on certain medications. She started rotating quercetin and bilberry - both contain anthocyanins which strengthen capillaries. She can now take the same meds without any bruising. So while you search for answers, maybe one of these supps can help strengthen the capillaries in the sinuses?

  7. Thanks, Nancy. I did mention he's headed into HS, right? Which makes him 13 right now. So no reveling or basking. The only glow is the irritation coming off my red cheeks as we argue over why it's not appropriate to take your black dress clothes for today's dress rehearsal (production crew for the school play) and wad them up into your backback. Apparently, I am incredibly out of line for suggesting one should not look like they've slept in their clothes or dug them up from the bottom of the hamper when one is part of a school play.


    But as successful as your DS is, surely you've been down this path. I'll assume your image of my basking is painted in jest! But yes, we will get kid #2 better. And then someday I'll have Grandkids and that will be the sweetest revenge nature bestows!

  8. Yay for your oldest!!! Like yours, mine is off meds (3 yrs now) and an academic success. The kid who we once argued about holding back is an honors student and headed into HS next year, complete with obnoxious teen attitude. I used to tell people that because they're supposed to outgrow pandas, I was the only mom I knew who looked forward to having a teen. I should've known better! But at least it's normal stuff and I'm happy to turn gray over simple things.


    Like you, my youngest is struggling. Thankfully OCD is minimal but she's often a stunt-double for Linda Blair in the Exorcist. She's just about mastered the head spinning completely around and instead of hurling projectile vomit, she hurls insults and irrational accusations. She battled mold issues in school last year - almost landed her in the hospital twice. So she's homeschooled this year - something we never imagined doing. The issues from last year took a toll on her and in Nov. she crashed, developing a range of neurological issues. Still trying to dig out of that hole (lab results pending for a variety of things). But...with every suckish challenge, there are gifts. Homeschooling has been an awesome experience - her self-confidence has returned, she's able to move at a pace that's good for her health, and no skeptical administrators to make us feel defensive and stressed. She's developed a full range of creative interests and is considering homeschool next year, whether her health requires it or not.


    So I feel like I'm 80 yrs old, but at least we can both look to our first borns and know it can be done! I hope your journey starts to get easier - you so deserve it!

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  10. T&A definitely helped my son. But I would be very wary of any doctor who claims any specific procedure will cure something as complex as Pans. It shows a lack of understanding of the illness. It also shows a complete ignorance of bartonella. You will not cure bartonella with a T&A. That's absurd. It doesn't mean you shouldn't pursue a T&A. Just don't go in thinking it will be a cure.


    If the child is herxing to the point of misery, ask the treating doctor about a pulsing protocol. Herxing is a result of toxins and inflammation. Pulsing means taking the antibiotic (herbal or prescription) for a certain period and then taking some time off to allow the body to detox and reduce inflammation. The pulsing pattern depends on the life cycle of the bacteria or virus you're fighting. Bartonella seems to have a cycle of 3-6 days. So you could take the herbal tincture for maybe 5 days and then take a 2 day holiday to let the body recover. Then 5 days on, 2 days off. Over time, herxing should become less severe with each round of "on" days and each holiday should give you more and more relief. I'm not an expert on bartonella - so I'm using the 5 days on/ 2 off as an example. You'd need to check with the LLMD for this child's specific plan.

  11. First, I'm sorry to hear about your son's struggles and the pain you must still be carrying. Kuddos to you for being so able to talk about it and work toward moving forward. It sounds like you're creating a healthy environment for your daughter.


    You say you're not one to panic until it's time to panic. Yes, it sounds like it's time to panic (well, not panic, but to listen to your gut). This absolutely sounds like Pandas/Pans. And your pedi is wrong - the urinary issues are indeed physiological and not psychiatric. While I can't give you any published studies, the urinary issues are a hallmark symptom that was common in Swedo's first 50 cases (published in the 90s). One Pandas neurologist suspects that one of the nerves that regulates bladder contractions becomes inflamed and causes frequent contractions. It is not "in your head".


    It sounds like there's an infection that isn't being eradicated. You can try to work with your existing medical team, but most of us old timers have found this to be an wasteful approach, both financially and in terms of time wasted. Your best bet is to see a Pans specialist. There's a list of helpful doctors pinned at the top of the helpful threads at the top of the main Pandas forum page and you can get a good list here http://pandasnetwork.org/researchandresources/find-help/usproviders/


    In addition to Pandas, due to your family's history, I'd encourage you to learn about methylation. Methylation is the chemical process that, among other things, helps the body create neurotransmitters. If you have certain mutations on certain genes, this chemical process can become impaired. If you know you have certain mutations, and you have psychiatric symptoms that can come along with these mutations, you can use diet and supplements to help the body work around these mutations. So if you have a mutation that causes you to stay high in adrenaline longer than most people, you can take extra vitamin B3, which helps the body break down adrenaline. If you have a certain mutation on one of the genes that helps create serotonin, you can supplement with specific forms of vitamin B9 and B12 and help the body's efforts to make serotonin a little more efficient. This has helped my daughter immensely - both infection and methylation defects create bi-polar mood swings and depression in her. Treating both Pans and methylation has improved her outlook beyond words.


    Listen to your gut and pursue Pandas treatments for your daughter. The faster you get this under control, the easier the journey can be.

  12. I think you're right to pursue PANS for both kids. It sounds like your son's ear infection isn't being eradicated and he should probably be on antibiotics longer term - like a few months continuously. I know some docs hesitate to use abx for fear of resistance. But ironically, by only prescribing abx for 10 days and then re=prescribing a week or two later when symptoms return, they're contributing to resistance. The gap in treatment allows some of the bacteria to learn how to counteract that abx and teach that skill to it's offspring. So I'd advocate for a long course or better yet, a combo of abx. Different abx work by using different methods of action. So inhibit enzymes, some inhibit RNA, some inhibit DNA replication...if the bacteria as learned to survive against the abx you've been using, maybe add a second one that works in a different manner to prevent further resistance.


    Yes, it's common to see a complete resolution of symptoms while on abx and have them return once the abx is stopped. It means you haven't gotten rid of the infection.


    The bedwetting is also very common. It's theorized that one of the nerves that controls bladder contractions becomes inflamed and contracts more often than it should, including nighttime when it should normally be at rest.

  13. i agree I'd have looked for mold sooner - it was the last hurdle in my son's recovery and it was the trigger that caused my daughter to falter into some serious health issues that she's fighting now. But like SFMom, there was so much to tackle all at once, that while I wish we'd handled it sooner, I don't know that we could've because things were overlapping so much that it was too murky. For us, the mold was in the school building. My son's recovery wasn't complete until he matriculated from that school building and it wasn't until my daughter went thru the exact same classrooms (without Pandas or Lyme as an issue) and got better when home for winter break that we could see that mold was the issue.


    For my daughter, we ran some of the labs on Shoemaker's website www.survivingmold.com - particularly the HLA-DR gene test, C4a and MSH. From his site, he says

    "the labs we almost always obtain in kids: HLA,MSH, C4a, MMP9, TGF beta-1, CD4+CD25++CD127 lo/- (NB this is a test only obtained from

    But...as SFMom points out, you also need to be mindful of cash flow. For us, Lyme was clearly an issue, mold was only a consideration after DS didn't get completely well after 1.5 yrs. So we couldn't have afforded to do it all at once and even positive C4a and other labs could've been caused by both lyme and mold. So while I wish we'd found mold sooner, I don't know if that was possible. We had to let other things play out first.
    However, if you know you've moved out of a moldy environment, do spend some time on the survivingmold website and read up on cholestryamine and detox. If your daughter can't detox well, then the mold toxins from your last home may still be causing inflammation in her and you'd want to consider using cholestryamine as a step prior to Lyme treatment, as way to help her body reduce inflammation. Dr C should have some experience in this and should be able to guide you. Just be sure to mention it as part of the health history.
  14. My son's chronic lyme was treated with multiple antibiotics taken at the same time (2-4 abx at once) to treat the 3 different forms a Lyme spirochete can take. It was a long road but he's now symptom-free and has been off all medications for 3 yrs.


    The best advice I have is to educate yourself ad nauseum. Become a walking encyclopedia of Lyme, the immune system, inflammation and mental health. Because no doctor, no matter how experienced, can ever know your child as well as you do, and will only see your child periodically, and will only know the facts you chose to report, which will in part shape the lab tests (s)he runs. So you need to become the expert, so you know what's relevant, what to look for, when to push thru a "herx" and when to say "hey, this isn't right". Yes, forums can help as sounding boards. But strangers on the internet can only point you in directions, we can't teach you everything there is to know. So read, watch youtube videos of doctors' presentations at conferences, scour PubMed as well as natural approaches to health.


    To start, read the pinned Lyme discussions at the top of the forum. They contain some good links. Second, read this series of articles https://www.lymedisease.org/lymepolicywonk-new-study-shows-lyme-persists-in-monkeys/ as well as Cure Unknown by Pam Weintraub and the articles on betterhealthguy.com. These will go a long way in getting a good background on a complex subject.


    In terms of doctors, there is no "best" Lyme doctor or "best" treatment. Finding a doctor is like finding a spouse. My Mr Right may not be your Mr Right. Get a feel for the doctor's approach, accessibility and style. I love my LLMD because he presents various options and then asks which approach resonates with my family. But some of his patients have seen this as being "wishy washy" because they're too sick to delve into the details and just want someone else to drive the bus with definitive instructions. So understand your own needs as you develop a relationship with a doctor - just make sure that doctor is an LLMD. In my experience, working with someone who's not immersed in Lyme is a frustrating waste of money.


    On steroids - my son did several 3 week tapers of prednisone before he was diagnosed with Lyme (when we thought it was "just" pandas). Two tapers helped immensely, one didn't. Steroids are generally avoided in Lyme because long-term dosing suppresses the immune system (a 3 week taper isn't "long term" IMO) and a short term dose (incl a 3 week taper) won't bring lasting improvement because the source of the inflammation (the infection) will still be there to re-start the inflammation as soon as you stop the prednisone. So if there's an active infection (of Lyme, or any other bacteria or virus), the immune system isn't going to be "re-set" because the immune system is doing exactly what it should be doing - creating inflammation as a way to call immune cells into action. Prednisone in my experience is helpful for temporary relief in a really bad situation caused by a chronic infection or when you're certain the infection is gone and you just want to speed up recovery - or long term use for autoimmune conditions where the inflammation can cause permanent damage to an organ).


    So if your child is non functional, there's a place for steroids even in Lyme (IMO). But realize that the improvements probably won't be long lasting. Still, sometimes even a few weeks reprieve can be a God-send in a family that's tearing apart.


    Oh - an in terms of having to treat multiple problems at once - yes, you have to. Lyme treatment is not linear. You don't have the luxury of treating just Lyme and then moving on to other problems. Biology is a complex web of inter-related systems. A good doctor may focus on the largest problem first, and then cycle thru other issues. This is like juggling. You may focus your attention on a particular ball at any moment in time, but you can never take your eye off the other balls.


    Become well-informed and very organized and methodical. That's about the best advice I can give.

  15. Yes, it was my son who had a horrible recovery from IVIG and it was due to undiagnosed Lyme. I do hope for your daughter's sake it is just a part of recovery.


    My son tested negative on a Quest western blot pre-IVIG. We re-tested thru Igenex 10 weeks post-IVIG and he was positive or indeterminate on 6 or 7 bands. He had been sick with Lyme and strep for so long (2.5 yrs) prior to the first test that his immune system wasn't creating antibodies against the Lyme. The half-life of IVIG antibodies is 3 weeks, we waited 10 to make sure the Igenex test wouldn't pick up donor antibodies. But the IVIG strengthened his own immune system enough that the post-IVIG Lyme test produced antibodies against many bands. The 10 weeks of was a long herx.


    You can talk to the IVIG doctor to see what anti-inflammatories might be an option. But if she's still struggling 2 months later, you might consider a follow-up Igenex to compare results to the first test.

  16. I also kept thinking Lyme. I always thought my DS was "classic" Pandas, with sudden onset after two confirmed strep infections/scarlet fever. When Pex didn't help him improve, I blamed exposure to others with infections (his BFF had 8 back-to-back strep/ear infections and then a T&A). IVIG didn't help. So after 2 1/2 yrs of insisting this was pure Pandas, T&A, steroids, pex, IVIG, trips across the country to see Pandas experts, I listened to all those who kept suggesting Lyme and we tested thru Igenex and found Lyme.


    Using Igenex is important because 1) they test for two very distinct Lyme bands - 31 and 34 - that other labs don't test for and 2) they report on IND indeterminate bands (bands that react but aren't dark enough to be called positive) as well as positive bands. Because he has so many IND, any other lab would've reported he was negative for Lyme. But our dr was able to see 5 IND and said it made sense to treat for Lyme. This was key. We treated for Lyme (a hard and long journey) and I got my son back. He's been off abx for 3 yrs. For the first 2 of those yrs, he had 1-2 week-long true Pandas flares when he got sick during the winter. Abx ended the flares within a week. This year, he got sick without any Pandas symptoms.


    You'll say "but he went a year without problems" - so maybe he contracted Lyme at the end of that year. And since you're used to seeing Pandas symptoms and Lyme can look a lot like Pandas, you would've just assumed it was Pandas returning.


    In my experience, if your child can't go longer than a few weeks or months without flaring, you're missing something - mycoplasma, Lyme, bartonella, mold...something is keeping his immune system in overdrive.


    Also, with MTHFR, you may want to consider methylfolate instead of folinic acid (the transformation goes from folic acid to folinic acid to methylfolate - MTHFR mutations hinder the first two transformations). But it doesn't sound like that's at the root of your problem.

  17. I've been at this for many years, with two kids who are affected - here's my take on it-


    You contract an infection and your immune system produces antibodies against that infection. So far so good. Then those immune cells migrate into your olfactory bulb (which may happen in all people because the sinuses are a first line of defense for keeping intruders out). But in Pans kids, those immune cells (Th17 antibodies) find a weak spot through the cribiform plate (boney plate that separates your sinus cavity from your brain). Now those antibodies are on the wrong side of your blood-brain barrier, where they don't belong. The brain's immune system (glial cells) react to this invasion and create an abundance of inflammation. It's an attack against self, but an understandable one. Those Th17 cells shouldn't be in the brain. This is what makes Pandas kids different from other kids who get the same infection - that breach of the blood-brain barrier.


    Once this breach happens, other infections in addition to strep can trigger the same response, and now you have Pans. Research has shown that these Th17 cells can stay active even 2 months after an active infection has been cleared. But in my personal experience, once you clear the infection, the body settles back down and you see symptoms start to resolve.


    So from a practical standpoint, if the antibiotics have helped your daughter clear her infection, then stopping the antibiotics should be ok. But realize if her body now responds in a Pandas way, she will be vulnerable to additional Pandas flares when she gets future infections. At least until she passes thru puberty - and at that point some kids outgrow it and some don't but seem to get less sensitive, tho still reactive.


    Some kids who have repeated flares are kept on antibiotics prophylactically. Some are lucky enough to enjoy long periods of being infection-free and can just go on antibiotics quickly at the first signs of behavioral changes and the horse is put back in the barn without long periods of disruption. But the key is to react quickly without relying on strep tests or "proof" on a new infection - because once you have Pandas, it can be many other infections that trigger the same immune response. And even then, one antibiotic doesn't work on every bacteria (e.g. mycoplasma or lyme need different antibiotics than strep) and it doesn't work if the trigger is a viral or fungal infection (yeast, mold, colds, flu). So for kids who have trouble staying healthy, this can be a more chronic situation.


    It's a delicate balance and you won't know until you stop the antibiotics and see what happens. If you see a return of symptoms right away it may mean that the infection isn't gone. If she seems back to baseline, then you'll need to be vigilant and hopefully have doctors on board who will allow you to put her back on antibiotics at the first sign of Pandas symptoms. But you should probably view this as a long term risk whenever she gets an infection. Pandas isn't a one time event. Once you have the condition, you stay vulnerable any time you have an infection, at least through childhood.


    But to leave you with a bit of hope...,my son developed Pandas when he was 6. Over 5 years, we had to treat him for strep and Lyme and mold exposure that turned out to be in his elementary school. He spent 5 years on antibiotics. Then 2 additional years going on antibiotics at the first sign of symptoms. He's now 13 and has survived his first winter without any issues, even though he was sick several times. (we've switched to herbal antibiotics that I can have on hand and use quickly without needing to get in to see the doctor and he's old enough that he can recognize early feelings, so our ability to respond is much better now). But he also seems to be outgrowing his vulnerabilities.

  18. I can't find anything that discusses treatment. What little research I can find seems to support the argument that you need to be homozygous for certain alleles - that being homozygous doesn't put you at any statistically greater risk of chronic infection than those who have wild type alleles. But I haven't been able to find the rs id #s for the relevant snps. This was the best I've found so far http://omim.org/entry/614372

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