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Posts posted by LNN

  1. Welcome. There are many, many PANS kids who've battled Lyme and you can search the forum for older discussions - many from the '09-'11 time frame. Te members on this forum are the ones who eventually convinced Swedo et al that Lyme can be as much of a trigger as strep and this led to the acknowledgement of PANS.


    There is a research paper from Dec '15 that shows how Pandas and Pans happens - the body gets infected by a bacteria that provokes the immune system to create antibodies called Th17 cells. Immune cells are often their most active in parts of the body that are meant as "front lines of defense" - e.g. the gut lining, the skin, the sinuses, the lungs - places that are most exposed to outside invaders. Th17 cells that are in the sinuses can migrate up the sinus tissues and into the olfactory bulb. In Pandas/Pans, these Th17 cells are able to cross thru a bony structure at the top of the olfactory bulb called the cribiform plate and then cross over the blood-brain barrier. Once on the wrong side of the BBB, the Th17 cells are treated as invaders and trigger an autoimmune attack and inflammation, causing Pans symptoms.


    The paper is here - http://www.jci.org/articles/view/80792


    Lyme is one of the bacteria that triggers Th17 antibodies.


    So your question about what to treat first is that you've got to manage the inflammation while treating the infection(s). But the inflammation isn't going to go away until 1) the infection is cleared and 2) the BBB is closed.


    Here's a good article about what may cause tics - http://www.haaretz.com/israel-news/science/.premium-1.730584?v=B3F0645CBADA2097AD188921173B405B

    It looks like the article has been restricted but you may be able to find it elsewhere by searching on the author. In the paper, it talks about tics being caused when a portion of the basal ganglia gets overwhelmed with signals and mis-fires due to the inability to process all the signals efficiently. Reduce inflammation and the tics go away.


    So if your son's tics are still present, it doesn't mean the Lyme isn't being treated. It just means you have a whole lot of inflammation going on in that part of the brain. 40 days is unfortunately just the start of treatment. My son was on multiple antibiotics (up to 4 different ones at once) for 2.5 yrs. He was a big ticcer and we found out that it wasn't just strep and Lyme that could cause his tics, but also mold (which was in his school building) and high mold counts in the environment (spring and fall).


    The good news is that after 2.5 yrs of treating Pandas with tonsillectomy, steroids, plasmapheresis and IVIG - which helped but not completely - he was correctly diagnosed with Lyme. With 1.5 yrs of heavy Lyme antibiotics and then 1 yr of antibiotics plus mold focus, he was totally healed and has been off all medications for 3 years. He went from being extremely hindered - physically and academically - to being very healthy and academically strong. He hasn't had a Pandas flare (from strep or anything else) in 1.5 yrs. He's 14 now - showed his first Pandas signs at 3 and was diagnosed at age 6. Healed at age 11.


    It is a long battle. You will learn a lot about many integrative and alternative approaches. Some will work and some won't. But don't lose hope. Kids can heal and move beyond - often much faster than their mothers can!


    As my son recovered, my younger daughter went from "iffy" Pans to full-blown Pans. Her issues have been predominately mold and sinus infections (staph) - no Lyme. She's allergic to most antibiotics, so we've found great success with herbal antibiotics and anti-inflammatories. If this resonates with you, let me know and I'll share more about the things that helped.

  2. I highly recommend Stephen Buhner's book on mycoplasma - he goes in depth on what's happening inside the body and why it can be so hard to treat and get rid of. It was fascinating. So if you can switch from augmentin back to bactrim or to biaxin, then that's the first thing I'd do. The second thing you can try is an herbal tincture called Dan Shen (aka Red Sage) which Buhner recommends. In January, research was published showing that this herb can prevent the migration of immune cells across the BBB - which is what causes PANS. So try treating the infection for months instead of weeks and consider Dan Shen to close the BBB



  3. On your daughter's negative Lyme test - you may still want to pursue testing through a lab in California - Igenex http://www.igenex.com/Website/

    What makes their test unique is 1) they test for two markers that are not screened for with other Lyme tests (markers that are highly specific for Lyme) and 2) they report results that are "indeterminate" meaning there was some reactivity but not strong enough to be called a positive. Other labs only report strongly positive. But sometimes a weakened immune system or a body that's battled a chronic infection isn't strong enough to produce a strongly positive. It only generates a "weak positive" or an "indeterminate" reaction. Igenex reports those "indeterminate" bands when other labs don't. So if you had 5 "IND" results (using 5 only as an example), any other lab would tell you you were negative for Lyme. But Igenex will tell you you had 5 INDs - and that, when put in context with symptoms that suggest Lyme, will make many Lyme-literate doctors (LLMDs) give a Lyme diagnosis. So something to consider if you can get the test.


    On mold...the doctor who's done the most research on mold is Ritchie Shoemaker, who says his research suggests that 25% of the population is genetically unable to rid the body of mold toxins. When mold toxins get into the body, the body is supposed to produce antibodies against those toxins and place little stickers on them. Then macrophages (white blood cells) are supposed to see the stickers and surround the toxin (much like PacMan eating dots) and then be eliminated in the body's waste. 25% of us can't produce antibodies or stickers. Our bodies see the toxins, and react by producing inflammation. But without those stickers, the macrophages can't eat the enemy, so those toxins just keep re-circulating in our bodies, month after month, even after you've left the moldy environment.


    So the first thing Shoemaker suggests is to run a genetic test called HLA-DR that will tell you if you're in that 25%. If you are, and you know you've been in a moldy environment, then you run additional blood work that measure inflammation - a marker called C4a which measures the immune compliment system - only becomes elevated for 3 reasons - Lyme, Lupus and Mold. If C4a is elevated, you look at markers that show if your body is trying to quell inflammation - MSH, VEGF and others. If all these labs paint a picture showing a body struggling - unsuccessfully - to rid itself of an invader - then you can start to follow Shoemaker's protocol. If you're able to get a doctor to order some of these labs and it looks like something to pursue, you can always PM me for details on the protocol or you can search this forum for some mold discussions (many of them from the '2010-2012 time frame). Shoemaker's website is survivingmold.com and the lists of tests he recommends is http://www.survivingmold.com/diagnosis/lab-tests


    As for mold causing PANS symptoms, when my daughter was repeatedly exposed to mold int he classroom, she developed respiratory problems that resulted in a chronic sinus infection. Shoemaker has named this type of infection MARCONS - multiple antibiotic resistant coagulase-negative stapholoccocus. MARCONS is resistant to many antibiotics and in Pandas kids, it can cause the body to make Th17 antibodies that migrate up the sinus tissues and cross the olfactory bulb and the blood brain barrier, provoking PANS symptoms. So you need to treat the MARCONS in addition to helping the body remove the mold toxins. For my daughter, who can't take most antibiotics, we ended up finding an herb called Alchornea and that worked wonders http://tipsdiscover.com/health/systemic-herbal-antibiotics-alchornea/


    I get ours from woodlandsessence.com but RowingMom may have better sources for Canadians. I know she's also had lots of success with herbal antibiotics and herbal anti-inflammatories.

  4. My daughter had uncontrollable muscle spasms that would last 90 min - 10 hrs per day. They were not the stiff/writhing motions you describe but involved rapid jerking and twitching of limbs - much like Parkinsons. She also had panic attacks, severe sensory issues, depression, OCD and ADHD. Her early medical symptoms were also "neglected" because we were dealing with a very ill sibling (who had undiagnosed Lyme).


    Antibiotics and antifungals for many months led to resolution. In her case, it was neurological complications from mold (in her school but once the mold toxins get in you, the problem goes with you wherever you go) and a related chronic sinus infection (which caused the Pans symptoms). Her EEG was also normal. She is also allergic to penicillins, cephalosporins and fluoroquinolone family of antibiotics. So we started using herbal antibiotics with great success.


    My son had severe motor and vocal tics along with OCD and anxiety and rage. His issues stemmed from Pandas and Lyme.


    Our most informative tests were tests for Lyme, a nasal swab that was cultured for strep, staph and mold, and blood work that looked for inflammation markers that often accompany mold illnesses. If you want additional information on any of these, let me know and I'll post links.


    I think you're right to pursue infection based causes. You may want to send a message to RowingMom, a member who isn't on the forum very much anymore but is in Canada and successfully treated her daughter for Lyme. She may be very helpful in navigating your health system and testing.

  5. For my DS (strep/lyme/mold), behaviors & thoughts were always resolved with medical interventions. But for my DD (staph/mold/methylation), it's a combination of medical to treat infection and environmental, nutrition/supplements for methylation and most recently, CBT.


    I'm finding that as she enters puberty, I'm having to re-balance her entire methylation regimen, trying to find new balance as hormones take on a bigger role. But she also suffered some major trauma from the neurological damage the mold caused and she actually has true PTSD from it. We've started with a pretty compassionate therapist who's laying the groundwork to do a type of therapy called EMDR, which is a type of exposure therapy that pretty successfully helps PTSD sufferers. After 2 years of serious illness, her system is now hyper-primed to react to stress and she's going to have to learn how to find her re-set button.


    I share your frustration and exhaustion. I've actually postponed our apt with Dr M because I don't think he can do anything medically at the moment. Our top priorities are methylation (which I pretty much have to do on my own) and therapy. The therapy piece is hard because DD is the one who has to do the heavy lifting on that one - I can't just do tons of research and give her a pill. And it's so hard to see her struggle to do this, sometimes unsuccessfully. I could also use some therapy at this point, and often fantasize about staking out a claim on an isolated beach with a frozen drink. But the funds will go toward her therapy first and then maybe if there's anything left over, I'll get my own scheduled in there. But for now, I'll just find solace in the fact I'm not alone.

  6. We only used the LDN for neuropathic pain, not for behaviors. It was significantly helpful for a few months and restored a certain level of relief for my DD's pain. But I don't have any experience in the other areas it's supposed to help with. As you say, try it and see. FWIW - my DD doesn't do well on Omegas or fish oil either.


    You may want to do Igenix just to get a better idea of things. Untreated Lyme can bring a cascade of issues.


    My DD is allergic to many abx but she had great results with an herbal antibiotic called Alchornea. It has an earthy taste, so we put it into an empty gel capsule (Amazon) and then she takes is quickly before it starts to melt. http://tipsdiscover.com/health/systemic-herbal-antibiotics-alchornea/



    We get ours from www.woodlandessence.com


    There's also an herb that helps close the BBB called Red Sage that might be helpful. PM me if you want more into on that one.

  7. I'm sorry for your frustrations. I understand what it's like to believe in the child you know is in there while those around you seem to just accept him as-is. I always felt like my son had been buried in an avalanche and I was the only one trying to free him.


    I can't advise on the IVIG. We only did one and saw very negative results within the first week - and went on to endure a 10 week herx b/c of undiagnosed Lyme disease. I do know others have said they saw a delayed reaction.


    If managing inflammation is when you see the most improvement, are you using an anti-inflammatory regimen? Motrin several times a day? Resveratrol? Low Dose Naltrexone? (http://www.lowdosenaltrexone.org )

  8. Why do you still have your tonsils? Tonsils can become chronically infected and no amount of antibiotics can get it all. I realize T&As are hared on adults, but that's the first thing I'd do.


    If you still have issues after recovery, then I'd consult with a Lyme-literate MD for additional testing (with Igenex Labs - not a standard western blot) and more in-depth treatment if warranted. Using only one antibiotic for a chronic Lyme infection is rarely effective if you've had Lyme for any length of time. Unless you're leaving out a lot of details, I don't get the sense your current doctor really understands Lyme. (tho kuddos for being willing to treat it).

  9. I personally believe pulsing is great for certain infections and a bad idea for others. I think it depends on the life cycle of what you're treating. In something like Lyme, which has a life cycle of 3-4 weeks and has behaviors associated with hiding in biofilms and re-emerging to replicate, then pulsing can be ideal. But if you're treating a virus or something like strep or mycoplasma that reproduces rapidly, then I think pulsing makes no sense because you're just beating the colony down, then leaving, letting it build back up and beating it down again, which could encourage resistance to that antibiotic. If you're using something like zith, which has a long half-life, you could pulse every other day and not really change blood concentration levels, but I think bactrim only has a half life of a few hours. So I wouldn't think it's a good pulsing candidate?


    If you're wanting to pulse for gut health, or if you have an infection that doesn't seem to be responding to pharmaceuticals, I've had great success with herbal antibiotics. Stephen Buhner's books are really helpful on this. DD had a chronic sinus infection (Marcons) and a year of abx wasn't getting the job done, She took alchornea (herbal abx) for 3 months and it's completely gone, and much kinder to the gut. Red Sage (aka Dan Shen) is another great herb for Pandas kids but should only be used for a month before taking a break, as it can raise estrogen levels over longer term use.


    Also, when symptoms don't seem to be linked to active infection but you relapse when you take away an abx, consider environmental triggers (eg mold) or look at the properties of the abx to see what body systems it could be effecting. Bactrim is a high sulfur drug. So that's impacting the transsulfuration system (part of the methylation system) that supports detox. Removing bactrim could be impacting detox rather than impacting an infection.


    I'm not a doctor, and not trying to gie medical advice. Just trying to toss ideas out there for you to consider. My DD has been in a bad place this past year (thankfully my DS is doing awesome, so his success has given me hope during dark days). And now that we've cleared her staph infection, it seems to be coming back to methylation issues for her.


    Hope you find answers....

  10. COMT and MAO-A both degrade adrenaline. So being +/+ means they are staying ramped up on adrenaline in stressful situations far longer than the other people around them. They're in fight/flight or worrier mode. This makes it way harder to concentrate on tasks and way harder to control aggression and anxiety.


    Phosphatidylcholine and/or phosphatidylserine can be helpful for adhd symptoms - phosphatidylserine really helps my COMT +/- and MAO-A +/- son. He's taken it for years. But...he does not have any CBS issues the way your do. I can't find info on whether PS or PC contain sulfur and if this would be an issue.


    I used to give PC to my DD who is COMT +/- and CBS +/- and MTHFR +/- and it helped with some tremors she was having. But when she was under tons of stress from mold illness, it ended up causing huge anger and aggression issues because it was over-stimulating the amygdala - which increases attention but also increases "survival aggression" and she reacted as if she were being attacked by a tiger.


    So I guess I'd say try it - you may like what you see. But start low and move up slowly. and put a tickler in your calendar to re-evaluate every few months. Sometimes what works great at first needs to be reviewed later.


    The best thing I've found for COMT and MAO combos is niacinamide (vitamin B3). Niacin helps COMT degrade adrenaline faster and is great for anger issues that are triggered by this genetic combo. I started with 50mg and increased to 100mg - use niacinamide or "flush-free niacin". Regular niacin dilates the small blood vessels and causes them to open, causing the skin to blush and releasing histamine, causing itchiness. It's harmless and temporary (lasts 20 min). But it's uncomfortable and who needs extra histamine? Niacinamide works the same, for the purpose you'd be using it for, and avoids the flush. Niacin is a methyl-taker and is a great antidote if you're an overmethylator and have too many unused methyl groups floating around.


    Copper helps MAO-A spin a little faster, but you need to periodically measure copper/zinc ratios if you decide to supplement. They are ying/yang and zinc is essential to the immune system, so you don't want to make this ratio get out of whack. You also want to avoid cough and cold meds and anything that says "do not take if you use an MAO-I or MAO-inhibitor. Their MAO is already inhibited, so avoid meds that inhibit this gene further.

  11. There's no single gene that determines if you're prone to under or over methylation. It's the combo of certain genes - COMT, VDR Taq, MTHFR, MAO are the ones that most influence, but MTTR and others do as well. You may want to PM Rachel for more input on Nutrahacker to see if it would help you determine overall status. I never used them - just figured things out on my own.


    If you have an MTHFR mutation, then you generally do well on methylfolate - which is what Deplin is. But Deplin comes in very high doses only - like 7.5 MG. And this can be too high for some people (and ok for others). When we started using methylfolate, we started with Methylmate B from Holistic Health - a liquid that lets you change doses in very small increments (one drop = 67 MCG - so less than 1/100 of Deplin). My DD only needs 67mcg every other day. More than that makes her moody and angry. If you want to try methylfolate, my advice would be to use Methylmate B and build up to the dose you feel you get the best results from. If this happens to match the Deplin dose, then you can switch to that. But using the liquid will let you dial in without taking a dose that's too large.

  12. I think following a non-GMO would be a good idea for anyone, as it likely reduces the amounts of pesticides you ingest and should reduce general inflammation. But in terms of Pandas symptoms, I don't see how it would stop or prevent the migration of antibodies across the BBB.

  13. It doesn't sound like a hallucination - he's not seeing things that aren't there. It sounds more like a visual processing issue - inflammation of an optic nerve maybe...

    Even if you did get a doctor to diagnose as a hallucination, I doubt insurance would agree to IVIG - that isn't a standard treatment for a mental illness. You need to stick to immune system-based disorders. Autoimmune encephalitis seems to be the dx with the most success.


    I know you say Lyme is negative - sorry I can't recall what testing you did. But the 4-6 week cycles are often a lyme flag. A life cycle of some sort. If he keeps getting sick that often, it seems more like one infection going unresolved rather than a half dozen new infections. I know your kids have lots of sinus issues - that's my daughter's nemesis as well. I gained a tremendous amount of knowledge from Buhner's books on Lyme and Mycoplasma. Even though my DD was negative for myco, the book gave me lots of insight into the sinuses and infection migration, and lots of correlations to staph infections. We did abx and antifungals for a year and could not get rid of the infections in her sinuses. Then we used alchornea - one of the herbs I learned about from Buhner - and that did the trick. I've come to see certain herbs as far, far more effective and far gentler than the Pandas treatments we pursued. Cholestyramine was also a huge help with auditory and visual symptoms for my DD. Even if it isn't Lyme Buhner's explanations of the physical cascades of inflammation may spark other ideas.


    Good luck with the insurance battle - if you can swing it, paying out of pocket may be your best option.

  14. Igenex will test the tick http://www.igenex.com/Website/


    Given your situation of having to manage symptoms without proper medical testing & treatments, you may find help by reading Stephen Buhner's books on Lyme, mycoplasma and anaplasmosis as well as his general book on natural antibiotics. I've found great success with alchornea (in his Natural Antibiotics book) to treat many bacterial infections and am having success with Red Sage (in his anaplasmosis book) for tics.


    I used to dismiss herbs as less effective than antibiotics but have come to see them as far more effective, easier to get and dispense at first signs and gentler on the rest of the body. I highly recommend his books even if you don't have infections that come from ticks.

  15. I suppose it could be a herx, depending on whether the bacteria you're killing is known for releasing toxins when threatened (some do, some don't). Yes, clarithromycin and zith are similar but they're not exactly the same and some bacteria will be susceptible to one and not the other. So it's hard to say if what you're seeing is a herx (a good thing as long as it's manageable and starts to subside) or a case of it not being effective and the essentially untreated infection making symptoms worse.


    You may want to call the doctor's office and ask to switch back to clarithromycin. Did he do a swab to test for antibiotic sensitivity? Did you discuss a T&A?

  16. This is the best summarized advice on Yasko's work and how to deal with each snp. http://www.heartfixer.com/AMRI-Nutrigenomics.htm

    But you need to know the status of all the genes in theses cycles, not just MTHFR. You're assuming (I gather) that you have issues with COMT because you have elevated norepinephrine. But COMT is not the only gene that regulates this neurotransmitter. The body always has fail safe redundancy and MAO-A is at least on other gene that regulates norepinephrine levels. I made the mistake of assuming things about myself while I waited for my 23andMe results and I ended up taking the wrong things. I highly recommend you do 23andMe to get the full picture.

  17. I'm so sorry. Autoimmune encephalitis is the dx given to the girl in Brain on Fire and treatment options were similar to those for Pandas - IVIG and plasmapheresis. Duke embraces the AE dx. Maybe you can ask questions that lead them that way?


    I know this must be so very hard for all of you. A living nightmare. I can't imagine how scared and sad you all must be. You just want what's best for the child you love. Try to focus beyond this and know you'll find your way out.

  18. The most common co-infections are mycoplasma (multiple strains, many can't be tested in commercial labs), bartonella, babesia, anaplasmosis and mold.


    As to which labs, I'm hoping other Lymies chime in. We just did Bart and myco testing but I don't get the hard copy of the lab results until next week (I only have verbal that they were negative). So I don't know which labs were used. But I know Mayo was not one of them.


    I assume you've used Igenex for the basic Lyme panel? If not, I would consider re-testing. Igenex reports on bands not reported by other labs and they also report Indeterminate bands (meaning the bands weren't dark enough to qualify as positives). other labs don't report indeterminates, which is misleading. You don't produce even a light band unless you've been exposed. So an IND is most likely a positive but a weakened immune system couldn't mount a strong enough response to turn the band dark enough to be called positive.


    I do not believe your child would produce antibodies against anaplasmosis just by being exposed to your husband. I think it is possible to react/produce antibodies to a strep carrier because your own body has likely seen strep before and can whip up a batch of antibodies just by "sensing" an impending infection from a carrier. But I think it'd be unlikely to produce antibodies against such a rare antigen like anaplasmosis unless there was a direct infection. Not certain but that's my guess.


    After reading your signature, I think it's great that you're giving everything a review. My own experience is that when I couldn't get my kids into a sustainable remission, I was missing something. So far, it's been mold as the culprit - mold in the school building, which of course took a long time to figure out. Consider running some of the labs listed here http://www.survivingmold.com/diagnosis/lab-tests

    This is what Shoemaker suggests for kids

    Do you order the same labs on children that we see on your physician’s order sheet?

    No, see the labs we almost always obtain in kids in the IACFS paper on this site. HLA,
    MSH, C4a, MMP9, TGF beta-1, CD4+CD25++CD127 lo/- (NB this is a test only obtained from
    Quest Baltimore), AGA, ACLA.
    We started with HLA, C4a and MSH. That was enough to convince us mold was an issue.
  19. On mold - I don't think it should be discounted. But you are just getting your feet wet. Give it time and see how she responds, see how your relationship with this doc evolves. If 3-6 months from now you don't think you're making progress, then you can ask your LLMD to run some of the Shoemaker tests for kids (google "shoemaker mold test children" and you should find an FAQ on his survivingmold.com site where he lists the tests he runs on kids


    On not mentioning biofilms or only starting her on doxy and not a combo - I think the majority of patients LLMDs see go in failrly new to Lyme and are easily overwhelmed - especially parents who've been watching their kids suffer and have been thru many docs without getting answers. So I don't think it's uncommon for a doctor to not discuss the whole enchilada in the first visit. There are just too many unknowns when you start out. Maybe a patient will have problems with films, maybe not. Maybe they'll have problems with coinfections or environmentals or nutritional deficiencies - or maybe not. To discuss all the facets in the first visit would probably make most patients feel like the doctor was all over the place and laying the foundation to charge tons of money on goose chases. So I wouldn't read to much into this - unless you asked point blank and were told biofilms are never an issue. If it was more a "one step at a time" approach then I'd try to give it more time.


    On detox - I never found much that helped. The best tools for my kids have been anti-inflammatories, which is what Buhner's thinking is. His idea is to reduce inflammation before even beginning treatment, so that the body is in better shape to help itself. Trying to bind toxins never seemed to work here. Flushing kidneys with water or an ornithine supplement did help some (for my DD's mold issues).


    For your results, Horowitz's Lyme Bingo is 23, 31, 34, 39, 83/93 - he feels that if you have any of these, you should seek treatment. I wouldn't bother to re-test. Most LLMDs would consider your clinical symptoms plus these results - and would probably treat you to see how you responded. One thought if you're lukewarm to this doctor is to see a different doctor for yourself and then you could compare the two in terms of style and fit.


    I love Buhner and have found him an invaluable resource. I like tinctures because they allow you to titer doses up and down much more easily and in small increments than you can do with capsules. But the taste is really hard for kids. So we (and other moms I know) get empty gel caps from amazon and put the drops into the gel cap. My DD then swallows that (quicky so the capsule doesn't start to melt) and there's no taste.

    One caveat - as much as I really respect Buhner and his experiences, I've had to really do my own research on the things he suggests. My DD is very, very sensitive to many meds and if someone in the room is going to have a negative reaction - it will be her. So I always spend time looking for the risks/side effects of the herbs he suggests and if any of those risks are too high, even if unlikely, I won't use it for DD. Herbs are just as potent as any medication and need to be treated with just as much respect, if not more, since potency can vary so much from supplier to supplier.


    Always start with just one or two drops and stay at low doses for several days before increasing and always back down on dose as soon as you see things you don't like. There's no rush on this. No medals for suffering more than you have to. Inflammation is as much of an enemy as the bacteria. So don't rush the body. Buhner's dosing recommendations are for a 150lb man. Reduce target doses based on a child's weight and size. I would only introduce one herb at a time and I think often, you can get away with a few and don't need to use everything he suggests. He's just laying out the buffet table. You don't have to put everything on your plate.


    In your research on herbs, try to find the active component and research that on Pubmed. I was all excited about Chinese Skullcap until Rowingmom told me that it can open the BBB. Probably not a huge deal for some, but a big deal for a Pandas kid. On the other hand, Dan Shen can strengthen the BBB - but shouldn't be used for more than a month without taking a month off, because of its effects on estrogen, copper metabolism and blood pressure. So really know the herb before using it.


    Ask Rowingmom for her experiences on Bart, but since you've just started this, I would not get ahead of yourself. Lyme alone can also cause neuro issues. Doesn't mean Bart won't need to be addressed, but I'd caution against throwing too many things at this tiny body too soon. Kids can't tell you how they feel so it's much harder to catch negative effects. Slow, slow, slow. Not easy, I know. But you want sustainable progress, not a rapid but damaging response.

  20. omg - I remember Pixie's Mom! Her daughter was a very, very severe medical situation - had a feeding port directly into her abdomen because she reacted to so many foods.


    I second mama2alex's advice on where to start. I will also tell you that you should consider what kind of treatment approach you prefer to follow. Dr K is very mainstream and has a rather narrow protocol. Once he feels a child has Pandas, he will prescribe antibiotics for a period of time but then if a child continues to have flares, IVIG is the only treatment he advocates. For some, this seems to work. But for others, this protocol misses the mark and other integrative approaches - or tests for infections beyond strep - give better results.


    So if you're inclined to work with someone who goes from A to B, then Dr K may be your answer. If you prefer to brainstorm or consider multiple variables, then you may want to work with someone else. www.pandasnetwork.org lists Pandas doctors by state on their website. But most vary in what they look for and how they treat. This is like dating - there is no "best" doctor. Only a "best" doctor for you. So give some thought to what you're looking for.


    Vaccines are a very personal decision. You might find this article helpful http://latitudes.org/defense-andrew-wakefield/

    If you do vaccinate, make sure your child is healthy and you may also want to consider the suggestions in this article http://www.livestrong.com/article/284264-supplements-to-build-immunity-for-infant-vaccinations/


    I don't think you'll find essential oils or CBD oil controversial here. But I also can't recall a lot of discussions on them either. There's a search tool in the upper right corner - you can look there. Or sometimes I get better/faster results if I go out to google and type "essential oils acn" or "essential oils latitudes" and that will pick up threads from this forum plus the other latitudes forums (tourette's, OCD, et al).


    One final thing in case you aren't already - make sure you're giving probiotics while your son is on antibiotics - and give them at least 2 hours before or after you give antibiotics.

  21. I am always so torn on this topic. My endless hours of methylation reading has ingrained a wariness of fermented foods because most in my family are CBS+ and fermented foods aren't well tolerated - we can't disarm the toxic sulfurs in them as well as we should - which negatively impacts ammonia levels, glutathione production and nitric oxide/SOD.


    If you ever come across anything that talks about CBS gene mutations and GcMAF - let me know!

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