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  1. Like
    TeamTyrion reacted to rowingmom in Can ADP (oil of oregano) & Probiotics be taken same time?   
    We take all antimicrobial herbs at least 2 hours away from bacterial probiotics. You may not have to do this with the yeast probiotics (saccharomyces sp.) though.
    Thanks for the links Mayzoo. I hadn't come across them and just separated herbs from probiotics because I thought I should.
    I see in the one link that cryptolepis might be the exception to the rule that herbs are generally easier on gut microflora - and it is.
    After a couple months using 5 drops BID of cryptolepis and only replenishing good bacteria with fermented vegetables we ended up having to go back to the full dosages of probiotics that we had been using with abx because of yeast overgrowth. We hadn't had a yeast problem for the whole year before that while the protocol didn't include cryptolepis.
    @ teamtyrion - Buhner says that using antimicrobial herbs along with abx can actually help. While abx only address infection via one biological route because they are composed of a single constituent (monotherapy), antimicrobial herbs have multiple constituents, attacking infection via different routes which can be more efficacious.
    Just be careful to only use low doses of herbs while taking abx. The antimicrobial herbs can act synergistically resulting in greater die-off than could be expected using either abx or herbs alone. This applies to the use of multiple herbs as well, but not as much for the anti-inflammatory herbs (Japanese knotweed, turmeric etc).
  2. Like
    TeamTyrion got a reaction from rowingmom in Possible pandas in my 4yo...   
    Getting vaccinated is a personal choice and it needs to be based on what you think is best for your own child; obviously a parent is going to prioritize her/his own child above the potential future welfare of other people.
    I'm sure Thundersweet chose to include that information about vaccinations in order to get informed responses, not to be judged.
    Thundersweet, we use Ultimate Flora (50 billion) but a word of caution: start slowly! Sprinkle just a bit in his drink/smoothie and then add a bit more everyday. Look for rashes on the body, which may be a good thing (herxing from bad bacteria die-off). Try giving epsom salt baths to help with detox too. Another word of caution: start with small amount of epsom salt and work up. Some kids have a sulfur intolerance and epsom salt baths are really magnesium sulfate (hence contain sulfur).
    Consider also oral magnesium (citrate form is probably the best) - check chemar's signature for "treatments that have helped my son" and you will see all the recommendations.
  3. Like
    TeamTyrion reacted to sf_mom in Herbs / Meds for Parasites?   
    For me: I did not come up positive on comprehensive stool, blood work nor did I feel I had any symptoms.
    How I discovered I had intestinal parasites was I went to a an Ayravedic Healer for my Lyme and they preformed an herbal enema. Shortly after treatment it felt like my liver was hurting and went to LLMD to run blood work. All testing came back normal.
    However the next day I started finding tape worms. Sorry if it's too much information but it's important to know I had no indication of them. The pain was most likely from many of them being bundled up together in my upper intestine.
    I am still treating.
    Our older son did come up positive on comprehensive stool analysis.
    100 years ago people used to treat their entire family for parasites every six months. Some how we have lost the importance of treating regularly.
  4. Like
    TeamTyrion reacted to rowingmom in Son with pain in groin area - need advice asap   
    It's so traumatic the things our kids go through. I am glad he's feeling better.
    DD got so used to being in pain that now she actually marvels at what she can do without it. She kept up with me cycling today at 16-18 mph and said she feels super strong. I have waited a long time to hear those words.
  5. Like
    TeamTyrion got a reaction from lovemylittleguy in Son with pain in groin area - need advice asap   
    So, everything is fine. The pain eventually subsided and there was no sign of infection. The doctor said it was likely a lot of gas from the abx.
    Good to know about the lymph nodes though rowingmom, that may also be a possibility.
    missmom - he said he didn't feel any pain during or after urination. It was just a constant, intense pain that lasted for about 2 hours.
  6. Like
    TeamTyrion reacted to BeeRae22 in No regression ever with OCD - Time for real help   
    I would find a pandas/pans doc and go from there.... If you're someone who needs the tests to feel as though you're on the right path, than it might be good for you. Any doctor who knows what they're doing in regard to pans/pandas is going to order bloodwork anyway. Many of the additional tests that you might consider may not be covered by insurance, and could be inconclusive- leaving you feeling frustrated. I would recommend doing research on any testing that your going to pay for out of pocket.
    Personally, I have not done any out of pocket testing for my dd. I would honestly love to do Igenix and the Cunningham panel, but my insurance doesn't cover it and I can't afford it right now. Dd's Pans doc tells me that ultimately, her treatment would be the same anyway-- based on her symptoms and response to treatment. Having a positive strep could be helpful in regard to insurance billing and is a routine test that's usually covered anyway, but I'd be willing to bet that even with a positive Lyme test (Igenix for example) you're not going to get very far with treatment with anyone but a llmd or pandas doctor anyway. When i first took my daughter in, Her pediatrician actually said to me "there's no such thing as chronic Lyme" and that because she didn't have strep, she didn't have pandas/pans and tried to send me to psych..... Ugh, what a moron. I think he's the one who needs psych-- boy would I love to see her pans doc face off with him!
    Like SSS said, try to get a trial run of abx if you can. We did notice an improvement after 2 weeks of azithromiacin, but different and more abx were necessary for greater improvement. (Like your son, my dd had rages, ODD behaviors, severe OCD, etc. we still havent "found Lyme" but we suspect bartonella.). Print out information to bring with you if you're seeing a non pandas doc, and be prepared to meet with a lot of resistance.
    Good luck and best wishes! Keep researching, asking questions, etc. Everyone's experience is different, but there are many, many knowledgeable parents on this board that have been through it all!
  7. Like
    TeamTyrion reacted to SSS in No regression ever with OCD - Time for real help   
    Well, I'm not a Dr. (of course) but when I presented PANDAS to our then DAN/MAPS Dr.
    (I had pages of written summary with our history about why I thought my dd, then 4-5 yrs. old, had PANDAS. Basically, she had all the symptoms, except overnight transformation, but yes waxing and waning.)
    I used this web page for symptom list:
    Anyway, that Dr. did know about PANDAS (and really, any DAN/MAPS Dr. should) and we did a trial of 1 month Azithromycin (full dose 6 days a week) and daily ibuprofen, with me taking copious notes, report back in 4 weeks.
    Absolutely we saw a turn around, it was amazing, with K teacher commenting to boot.
    I don't think your regular Dr. is going to prescribe PANDAS dose antibiotics in duration.
    Perhaps write up like I did your case for PANDAS, what you want, and approach your current DAN/biomedical Dr. you are paying for--
  8. Like
    TeamTyrion reacted to WorriedDADNMOM in PANS/PANDAS doctors in Canada?   
    Most of us here in the US are in the same boat. It is getting much better though. If you can consider self pay, there are some in Mich and Ohio that are VERY good (ours) or some that have been recommended.
    Best of luck. Let me know and I can PM you.
  9. Like
    TeamTyrion reacted to chubbermommy in PANS/PANDAS doctors in Canada?   
    Like Janice, we are using Dr. Wilson in B.C. We also have an LLND here in Ottawa.
  10. Like
    TeamTyrion reacted to lovemylittleguy in PANS/PANDAS doctors in Canada?   
    Have you joined PANDAS Canada or PANDAS/PANS Ontario on facebook? That would be a good start. I am in Alberta. We are using Dr. Wilson in B.C. (Naturopathic) by phone. Medical Dr. still looking, Integrative Dr. none here that I am aware of. Dr. Arnold out of sick kids in Toronto but my understanding is unless it is Pandas and very straightforward (ie following Swedo's research criteria) he is not much help. Lots of well informed eastern Canadian moms on both sites who will be able to hopefully point you in the correct direction.
  11. Like
    TeamTyrion got a reaction from tj21 in Autoimmune Encephalities   
    Absolutely. The burden of our child's healing is upon us. It shouldn't be! Our healthcare system should be on our side and dealing with this, but Pandas/Pans is still relatively "new."
    I wish we could fast-forward 100 years from now when (hopefully) the rest of society and healthcare will have created amazing ways to deal with our children's issues.
  12. Like
    TeamTyrion reacted to sf_mom in High Lead   
    I thought I'd post this particular link. It explains the various tests for heavy metals.
  13. Like
    TeamTyrion reacted to SSS in Autoimmune Encephalities   
    ** sorry, I missed this earlier. Some thoughts:
    The Lyme and co- infections are eradicated enough so that the immune system can take over/ keep them in check.
    Complete lifestyle change probably necessary: reduced/ low stress, very clean healthy diet, w/ no inflammatory triggers, no alcohol, exercise consistently, 8-9 hours sleep at night, rest when needed, perhaps meditation.
    Dr. Horowitz's book 'Why Can't I Get Better' talks about all the bodies systems, like thyroid, gut, those need to be working.
    That's the idea.
    So, you get there, cruising along, and say you decide to take a longer prescription of steroids for some reason, the immune system shuts down,
    a sleeping spirochetes wake up. Or you go into major surgery, same thing. Could relapse.
    Is it really possible to kill every single tiny one?
    I have read a well known Lyme Dr. saying 3 years remission, home free.
    Personally, as an infected adult who had this going on for untold years, did heavy treatment,
    I will always, always have to take my health seriously, put time and effort into it daily.
    I'm still on some herbs, special diet, etc.
  14. Like
    TeamTyrion got a reaction from SSS in Autoimmune Encephalities   
    Absolutely. The burden of our child's healing is upon us. It shouldn't be! Our healthcare system should be on our side and dealing with this, but Pandas/Pans is still relatively "new."
    I wish we could fast-forward 100 years from now when (hopefully) the rest of society and healthcare will have created amazing ways to deal with our children's issues.
  15. Like
    TeamTyrion reacted to Emish in Intuniv and other questions   
    I can’t really speak to the medication issue as I didn’t take anything when I was in school. As I became an adult, my anxiety level rose and I began Haldol and was on it for over ten years. Something I don’t recommend. After I got off of Haldol I began to learn about tic triggers and I realized just how much anxiety affected my tics, specifically when I’m waiting for some event to arrive. (Such as the new school year) I also realized that my tics always got worse in summer. I realized that it probably has something to do with either mold or pollen that is so prevalent in summer. Now, after I've been outside in summer, the first thing I do is get a shower. Then, I will breathe steam for about 10 minutes. It seems to help.
    You’re probably right regarding the puberty angle. Also, his anxiety about starting high school could be adding to it. Certainly, the thought of being made fun of is a daunting thing. One thing I can say about it is that in my experience and in the lives of many with TS, having a particular activity in your life that you’re passionate about is a big insulator against the psychological effects of bullies. My thing was that I was good at baseball so that was a type of protection for me. I don’t know if your son is athletic or not. I know that some people who are not gifted in a sport have used weight training as a tool to boost their confidence level. There's something about hoisting iron that just makes one feel mentally stronger and confident. (And certainly, building some muscles could be an effective deterrent against bullies. J
    The most effective thing though is for him to simply laugh it off immediately. He should explain what he has and how he can’t control it. Then, if the bully doesn’t stop, he needs to muster the initiative to go right along with it. If the bully begins imitating him, he should join him, performing a few tics right along with him and then sharing a laugh, saying something like: “I know, the brain is crazy isn’t it?”
    The worst thing he could do would be to lower his head and appear hurt. It will hurt temporarily of course, but if he can just “act as if” if doesn’t that very first time a bully strikes, it will most likely die out. The bully will have no incentive to continue. After all, where’s the fun of making fun of someone who not only shows no sign of getting upset but laughs? Have him role play with his Dad (or other male friend) so that he is ready to go and knows exactly what he's going to say and how.
    Hope this helps a little. I will say a prayer for your family.
  16. Like
    TeamTyrion reacted to Chemar in Intuniv and other questions   
    Intuniv is primarily an ADHD medication (aka Tenex , guanfacine )
    From what I know of it, usually it is only rx for tics that are co-morbid with ADHD?
    I would urge you to also look at the potential adverse side effects just so you are aware of those and can be watchful for them should your child exhibit them.
    Acupunture has always been one of the most helpful treatments my son had. You should ask if the acupuncturist has experience with children/tics. Select a clinical acupuncture practice.
  17. Like
    TeamTyrion reacted to TessaKrista in Is manganese bad for tics?   
    Yes...stay away from manganese. Wonder Bread has lots of manganese, and is really bad for kids with tics or any neurological things going on. Stay away from Wonder Bread, until they change their formula and remove manganese. That includes their hotdog buns and hamburger buns. Too much manganese. Manganese causes tics to go crazy in kids with tic disorders, even mild tic disorders. The manganese impacts on them really badly. Also, there are other brands of breads, even whole wheat bread, that lists 100% manganese for 1 slice, which is way too much. I only buy bread that lists zero percent manganese in it, or the natural bread from Ace Bakery, or the Whole Foods bread made in their bakery. I don't remember if it's Dempters or another brand, but it has way too much manganese, and I totally stay away from it. Also, there is a cereal called Bran Buds, that has way too much manganese in it. Whenever my child would take it, he would react horribly.
  18. Like
    TeamTyrion reacted to momslove in Food allergy question   
    I don't pretend to really understand how it all works, but I can tell you that the best year (dare I say "normal") we had since this all started with our DD was the year we altered her diet to eliminate/reduce corn AND treated her allergy with sublingual drops daily. Her drops were targeting a variety of common environmental allergens as well, based upon mild reactions in testing. Additionally, she would call me from school some days if she felt increased anxiety. I would bring in her drops and she would feel better. The allergy clinic we used was not covered by our insurance (for ANY medical purpose) because they treated with sublingual drops routinely. People came from far and wide for this type of treatment, but the "establishment" does not support this approach.
    I can't tell you if this could have been the end of PANDAS/PANS for DD because, in her "normalcy" we dropped the ball and slowly went back to "normal" eating and stopped the drops. When illness returned, she was unable to use the drops. We were off on other paths for recovery... and still searching, but back to diet changes and things are looking up.
  19. Like
    TeamTyrion reacted to LNN in So when will the flare end?   
    Sacc B makes my son rage and display "yeast-like" behaviors - tics, sillyness, impulsiveness, brain fog. It isn't a "good" yeast for everybody. NAC makes my daughter go nutso - rage, depression, mood swings. It makes me depressed and raised my ALT and AST liver enzymes - we both have CBS mutations and can't tolerate the sulfur level of NAC Antihistamines (specifically zrytec) gives my daughter anti-cholinergic symptoms like shaking, tremors, and tachycardia. So I'd consider methodically removing one of these, or the Vit D as smarty suggests, and see what happens over 2 weeks. If nothing changes, you can probably add it back. Then remove something else.
    As for a never-ending flare, I insisted my son only had strep issues and for 2 yrs, chased strep, blamed "exposure" to friends who had strep, etc. Strep was a big problem for us but so were lyme and mold - I just refused to look for it in those places. When I finally did, we made progress. So if it isn't the supplements, it's possible there's another root cause beyond strep that you haven't found yet.
    I get how the tics are unsettling, They kill me too because they mean something's wrong. But...I'll take them any day over having my son confess that he's having intrusive thoughts about harming me or raging so badly that he loses friends. Those times were way worse.
  20. Like
    TeamTyrion reacted to LNN in Tourettes and Histamine...and methylation   
    Well, I figured this would be a swamp and I also figured the majority here would have undermethylators. Sigh.
    Like every neurotransmitter, even our nemesis glutamate, none are pure evil. They're all necessary. It's just about balance. I'd always ignored the discussions about Histamine receptors because they never applied to DS and while DD has high histamine, hers was under control.
    When I saw these TS studies, it made me realize that the very cycles that were affecting DD could also be affecting DS - in the exact opposite ways. So I went on a google fest looking for ways to increase histamine and of course, the majority of ink is spent on how to decrease it. There are histamine supplements but I hesitate on that - not sure it's a matter of adding more histamine. Histamine is methylated into two components - histadine and glutamate. Certainly don't need to be adding more glutamate. What I want to focus on is that road junction where the body decides how much histadine it can make and I'm just not sure that adding more of the raw ingredient is the right place to focus. That's what I'm hoping someone can help me with.
    There are 4 types of histamine receptors, as far as I can tell. And things like Pepcid and zyrtec seem to work by blocking particular receptors, rather than actually reducing the raw supply of histamine. I "think" quercetin and lutein act upstream, actually reducing the amount of histamine released by mast cells. But all these things are reducers in one way or another. How do you upregulate the release of histamine? Niacin does this briefly - that's one reason why you get a "flush" from it - it's the small capillaries releasing histamine and prostaglandins (something else I need to learn about). But once that histamine is released, you've temporarily depleted the supply. I need to figure out how to increase the supply - but at the right point in the cycle. Not by necessarily dumping more raw material into the pot and hoping it gets sorted out correctly. Where is the roadblock? This is, I think, where the tic is originating.
    Walsh, Pfeiffer & co. are vague on this, as they are on many specifics of their work. One one hand, I'm amazed at how insightful they were 40-50 years ago and how on target their basic theories are. On the other hand, Walsh's work continues to be based on general symptoms and forces you to put yourself into one bucket or the other (under or over methylator) when in reality, you can be an undermethylator at one point in the chemical highway but an overmethylator at another point and knowing your gene status at these various junctions can be really informative. This is the piece I'm searching for. I can't throw spaghetti at the wall to see what sticks and add x, y, and z. when 23andMe and my own experience tells my that too much x and y send DS into orbit.
    I need some help identifying what x, y and z are and then I want to systematically adjust one at a time. So far, it "seems" that increasing "folate" (and Pfeiffer uses this term without recognizing that different forms of "folate" can have major differences because MTHFR wasn't well studied back then) would be helpful, along with the right form of B12 and some niacin. But this needs to be done in a way that doesn't add too many methyl donors b/c DS is already an overmethylator (thus DS needs to avoid SAMe like the plague even tho it plays a role in histamine regulation).
    I think this weekend's experiment will be to add some folinic acid and add some additional niacin to DS's mix. I'll keep you posted...
    Nicklemama and Peglem - just an fyi on the antihistamines - switching now to a story about my daughter. She has MTHFR +/- and terrible allergies. So she's taken Zyrtec and various antihistamines her whole life. Three times now we've had severe reactions because of antihistamines. When she was 4, the minute clinic dr. told me her flu wasn't the flu but an allergy and I should give an antihistamine. She then spiked a fever and antihistamines can lower your seizure threshold. She had a febrile seizure as a result. Then when she was 7, she had a cold and I was dosing cold medicines every 6 hrs as directed - but for many days in a row. It provoked an anti-cholinergic response with horrible tremors, spastic movements, spaciness. We ended up needing an EEG a few weeks later (which was thankfully normal). But I realized I could never again rely on steady doses of cold meds. Then recently, she'd been taking a nightly Zyrtec for fall & winter allergies and she started having tachycardia (150 bpm) for 2 hrs at a time and having whole body tremors. This would happen several days in a row, several times a month. When it finally dawned on me that it felt similar to her anti-cholinergic episode from the cold meds, I stopped the zyrtec and the symptoms went away.
    Googling taught me that antihistamines block choline receptors and can provoke tremor/seizure like symptoms. DD also did a spectracell test that showed a choline deficiency. I've started giving her choline (100mg daily) and surprisingly, the body itchiness and allergy symptoms that were prompting me to give her zyrtec in the first place have stopped. So it seems she was 1. already deficient in choline and then 2. I was blocking choline receptors and this was depleting the system even more. So peglem - Allie's response may have something to do with a choline deficiency. To anyone using daily allergy meds - just a word of caution. Indefinite daily dosing can trigger some adverse effects that look like tremors and POTS. Check choline deficiency as a possible issue.
  21. Like
    TeamTyrion reacted to sf_mom in Stained Teeth   
    35% Food Grade Hydrogen Peroxide dilute down per information on-line. It should take care of any staining. I brush my teeth and scrap tongue with it.
    Here is where I purchase.
  22. Like
    TeamTyrion reacted to Chemar in inositol for ocd   
    not sure if Bonnie may be away for the summer etc
    my son uses Inositol with great success. He takes around 12 gm daily(Jarrow powder bought at iherb.com for much less!!) along with the P-5-P form of vit B6 (helps the inositol work better) Only short term when OCD is flaring tho!! Other times 500-1000mg a day
    Methionine (or the samE form) is also helpful. He takes 500mg a day of that with the inositol if OCD waxing severely and ups the inositol to 14-16gm at those times
  23. Like
    TeamTyrion reacted to rowingmom in DS is trying to bite everything/one - flare? herx from Biocidin?   
    A herx is usually an increase of existing symptoms, although you may also find new symptoms popping up. The only way to tell if it is a herx is to decrease dosage, as you have done, and increase detoxing.
    If symptoms resolve it was a herx; if symptoms continue to escalate you are having a relapse.
    If, as you think, this is a new tic, that's entirely possible - tics do morph. If he is biting out of anger he may be dealing with increased brain inflammation and anti-inflammatories may help. We use OrangeNaturals (Canadian made) turmeric tincture as well as Meriva turmeric and Japanese knotweed.
    For DD ticcing is related to bartonella toxins produced by antimicrobial induced die-off as well as yeast/mold toxins (this includes internal candida yeast). Oregano oil is broadly antimicrobial so it could be impacting the gut flora. Make sure you are giving sufficient probiotics.
    Biocidin looks like a good product. I will have to investigate as we are taking many of those herbs individually. I would only be leery of the white willow for children.
  24. Like
    TeamTyrion reacted to LNN in zinc users   
    I lean toward picolinate form - tho you can find articles supporting both forms. I love Biopure's Core - DS does far better on it than on any other source (but he is strongly + for pyroluria, so that probably plays a role in his response, as he needs all the additional minerals in Core). The B6 is important for everyone - major player in the transsulfuration pathway and in detox/glutathione production. But enough is as good as a feast so try to stay with supps that don't go overboard on dosages hundreds of times greater than RDA.
    Every few months, we do a "zinc challenge" - take 10ml of liquid zinc (from amazon). If it has a strong metallic taste, you're good in the zinc dept. If it has no taste, you likely have a pretty decent deficiency. i use that to judge whether each of us is at the right dose and then at least once a year we do a spectracell test to check levels of various nutrients.
    Without school to use as a barometer, you can ask him about his dreams. Those w/low zinc don't recall dreams as well as those who are plentiful in ziinc. For DS, we noticed he also got subtle humor quicker when he had the right amt of zinc.
  25. Like
    TeamTyrion reacted to LNN in When to keep pushing for Lyme?   
    My son went thru 2.5 yrs of lyme treatment after 2+ years of unsuccessfully trying to treat Pandas - so I understand why Pandas/Lyme parents are so eager to save others from wasted time. However, I agree with the others who say if there aren't symptoms, then don't treat. On the other hand, if the $200 is available, and there are some symptoms that don't seem to be resolving, then testing thru Igenex does give you on more data point. It's a personal decision and you should always follow your own gut, not the opinions of internet parents who only know a sliver of your situation.
    That said, I found my own lyme/Pandas ticcer son has multiple triggers for his tics. Yes, he tics when he has an active bacterial infection - be it strep or lyme. But even a year after stopping abx and going months with no symptoms whatsoever, he may still have tics crop up and we've found that mold is a strong trigger for him. Not talking about black mold creeping up the walls of damp sheet rock. I'm talking about mildew on the windows in the tweens' bathroom (the one that's subjected to too long, too hot showers). Or mildew on the drum of the washing machine that made the clothes musty and caused two of us the itch like crazy until we cleaned the drum and re-washed the clothes. Or mold on the bottom of the window air conditioner drip trays (or in FL, air ducts of a central air system.). Within days of finding and eliminating a mold source, the tics stop.
    So a mold source - in your home, in his school - might be something to rule in or out. You can test for inflammation markers that tend to rise with mold exposure and you can test a gene that indicated whether you can clear mold toxins well (HLA-DR gene). These blood tests have been covered by our insurance and can be done at any commercial lab. You can find more info here: http://www.survivingmold.com/diagnosis/lab-tests Also read "The Biotoxin Pathway" on the same site. Very helpful perspective.
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