Jump to content
ACN Latitudes Forums

LNN

Premium
  • Posts

    3,384
  • Joined

  • Last visited

  • Days Won

    84

Everything posted by LNN

  1. We did cefdinir and then replaced it with rifampin. Didn't do both at the same time. Cefdinir produced a wicked herx for DS but it was only 8 months into treatment, so he wasn't in the place you're at now. It crosses the BBB and can be very effective. I think one reason the two aren't used together is that generally, the LLMDs try to use one extracellular and one intracellular abx as a combo and both rifampin and cefdinir are extracellular.
  2. The 2000 ft overview is that about 45% of the US/European population has an MTHFR mutation. The C677T mutation generally effects homocysteine and indirectly, ATP (cell energy) and generally makes you an undermethylator (tho mutations in other genes can also influence this). When you are heterozygous, you're running at roughly 50% efficiency and when you're homozygous, you're running at about 10% efficiency for what that particular gene is supposed to do. Doctors are wrong that it doesn't need to be treated and that measuring homocysteine is an accurate assessment of this gene's impact. As with many things, symptoms need to be factored into treatment recommendations. Generally, you should be treated with a low dose of methylfolate + methylB12. (my DD8 has had huge improvement in mood swings since settling on a supplement of 67mcg methylfolate + 1000mcg methylB12 every other day). Much less is published about A1298C but it effects the "backward" cycle of methylation and it's role in the BH4 cycle. The BH4 cycle directly effects serotonin and dopamine levels. It also seems to play a role in GI issues. Treating the roadblock created by C677T will help and is a first step. Later, if there are still issues and you've addressed any other methylation mutations, you can supplement with TMG or DMG to try to support the BH4 cycle. I know you only want a high level overview so this is the bottom line - treating MTHFR with an appropriate level of methylfolate+methylB12 (and avoiding foods or vitamins with regular folic acid) will help with energy, reduce some factors that contribute to heart disease and improve mood and levels of neurotransmitters (but there are other factors that influence this - MTHFR is just one player). How you do treat for your child depends on his other methylation markers and for that, you'd need 23andMe results or Yasko results, and you'll need to dive into the deep end and teach yourself the nitty gritty of methylation, snps and how it all interplays. In addition to the links Red listed, here are some others: http://chronicdiseasetalk.wordpress.com/ http://www.mthfrsupport.com/1/post/2012/01/the-importance-of-bh4-in-the-mthfr-a1298c-gene-mutation.html http://www.mthfrsupport.com/1/post/2012/05/other-gene-mutations-that-must-be-addressed-before-starting-an-mthfr-protocol.html http://www.easytolovebut.com/?p=2782 http://www.heartfixer.com/AMRI-Nutrigenomics.htm (scroll down past the diagram) http://www.renewashoe.com/medical/
  3. I think the person to contact initially is kathryn.morrissey@childmind.org She runs the Speak Up for Kids campaign. Caroline Miller is their Editorial Director and I get periodic newsletters from her but I can't find her email on their website. When I get the next newsletter, I'll post it. We may or may not be able to change their views on Pandas but I'd at least like to try to get them to remove that nonsense about the myth and the going away easily drivel.
  4. Yeah - NY has some very weird testing restrictions. Who knew spit crossing state lines would be a legal matter? But congrats on getting the test done. Hope the two months of waiting go by quickly. DH and I just mailed ours last week.
  5. What is VEGA? I found his 2009 book but only see him talk about VEGF - is that what you're referring to? Why would the whole family need to be on garlic if DS had yeast? (DD cannot handle garlic or any sulfur at the moment as we treat her CBS methylation road block). I will edit my morning post to say the eye blinking is better but not gone. The OCD is not as gone as DS thought (which actually makes a lot more sense to me). Will stay off abx for the week as an experiment and keep notes. Then see what the LLMD has to say next week.
  6. We use Truflora http://www.theralac.com/powerful-combinations.aspx 2x/week for yeast, Theralac http://www.theralac.com/default.aspx and Ultimate Flora http://www.ultimateflora.com/?gclid=CLWsisqTrLYCFe07OgodwCAA6A rotated the other 5 days. We shoot for 15-30 billion CFUs daily, given at bedtime when the stomach is less active (so more probiotics survive the stomach acid) and when the bowels are less active - and at least 2 hrs away from antibiotics. Probiotics that are stored refrigerated (like those in your local health food store) may have more love cultures than those stored for 6 mos in a hot Amazon warehouse. I buy many supps from Amazon but not probiotics. You can also look for supps that contain FOS - a prebiotic. Some people really love Sacc Boullardis - a "good" yeast that can be taken at the same time as antibiotics. For reasons unknown to me, Sacc B makes my DS very angry and impulsive - as if he has a yeast infection. I've tried it twice with the same results, which is unfortunate because Sacc B is about the cheapest probiotic out there. So if you decide to use it, introduce it at a time when you're making no other changes and observe for a week. Then you'll have a better idea of how it effects your son.
  7. On my recent readings on yeast, I came across something I figured I'd pass along. My DD has a methylation problem with her CBS gene, which causes problems with energy production and ammonia and problems handling sulfurs. Two of the things that are supposed to be good for her to work around this block is CoQ10 for cell energy (and this has made a big difference for her) and molybdenum. In researching molybdenum, I found that it helps break down acetaldelyde - the neurotoxin released by yeast. When yeast releases acetaldehyde, if your body can't break this down (which DD can't do well due to CBS +/-), the neurotoxin can't be expelled from the body. Instead, it accumulates in the soft tissues like the liver and leaves you with aches and feeling run down. Adding a small amount of molybdenum breaks the acetaldehyde into acetic acid, which can be excreted. So I pass this along FWIW to those struggling with yeast and perhaps C Diff. Most supplements come in 100-200mcg doses, which is way too high IMO. Kids need 20-35mcg depending on age. The only thing I found was drops from Yasko's Holistic Health site, with one drop having 25mcg http://www.holisticheal.com/molybdenum-drops.html DD needs this anyway, regardless of yeast, so I ordered some. I pass it along as an fyi.
  8. As I was reading up on some methylation stuff for my DS, I read up on the MAO-A mutation. It's sometimes called the warrior gene as some mutations are tied to aggression. It also plays a role in serotonin metabolism and may be one reason some people don't do well on SSRIs. It isn't clear to me whether DS needs something to upregulate his mutation or downregulate it, but Wiki listed MAO-A inhibitors and among them is Curcumin/Tumeric. Wondering if this is one reason some parents see such good stuff from Enhansa. Enhansa did nothing for my DD (who has a normal MAO-A) but never tried it on my DS (who is +/- for the MAO-A snp Yasko looks at). If anyone can read the Wiki writeup and tell me if I should be looking to upregulate or inhibit, I'd appreciate it http://en.wikipedia.org/wiki/MAO-A (the Yasko snp is R297R)
  9. It sounds like your LLMD has guided you well so far. And since your DS hasn't had major issues with herxing in the past, I'm not sure I'd be too worried about the tindamax. It was very harsh for my son, but he also herxed severely on other things as well (like omnicef). It doesn't sound like your son has the same obstacles. But if you're worried, you could also ease into it. Do one dose on a Friday night and stop. Then the next weekend, if all went well, do one dose Fri night and one dose Sat morning. If that goes well, on the third weekend, do a Fri pm/Sat am/Sat pm/Sun am schedule. This still gives you all of Sunday to watch for/deal with a herx without him having to deal with school. Because you've had such great success, I think it's worth listening to your LLMD - she knows your situation better than any of us and seems to know what's best. Better to ease in slowly and give it a try than to not do it and wonder later. That said, if this just doesn't sit well, listen to your gut. You can always stop abx and see what happens. Worst case, you re-start abx if he relapses and you do tindamax then.
  10. The only other thing I can think of is that the IVIG itself contained high donor antibodies to mycoplasma and that's what's showing up. When we did our one HD IVIG, we were told to wait at least 8 weeks, preferably longer, before testing with Igenex for Lyme. We waited 10 weeks. It's also possible that you're right - his immune system is stronger and can see the infection now.
  11. Hugs - I don't think it's puberty yet. No signs that I can see. But here's a strange twist for all of you to make heads or tails of... The yeast thing struck a chord with me for several reasons - first, when this started 6-7 weeks ago, there was no sign of an infection and the addition of augmentin made no difference. So a Pandas flare is not high on the list of culprits. And you'd think if it were a lyme flare, the addition on a third abx would produce some sort of effect. second, he's been on the same abx combo (zith + rifampin) for a year. We took a 3 month break in the summer and re-started due to some backsliding in the OVCD/brain fog department (which in hindsight, may have to do with methylation on not lyme). When we re-started the abx in Sept, he didn't herx. So unlikely he just suddenly started to herx from this combo in february. So herx becomes an unlikely culprit. This made yeast a reasonable thing to mull over. Yeast could certainly crop up after so many years of abx, out of the blue. It can cause OCD and tics. I didn't see age-regression/silliness (which I've seen in past yeast infections) but he's also older and spent an awful lot of time on X-Box, which is a new fixture in the house. In the past, he's had his sister to provoke the silliness. So on a lark last night at dinner, I'm doling out his pills and decide to leave out the zith+rifampin. I give him a garlic pill, which he always gets at dinner. At shower time, he's telling me how the OCD is driving him nuts and how many small "feels right" rituals he had to do that day. At bedtime, I give him double dose of probiotics and a second garlic pill. All other supps stay the same (magnesium, psyillium, core). This morning, he says "Mom, my OCD is way better. I hardly feel the urge to do the eye blinking thing." Now, even if it were yeast, in light of the Easter candy feast and in light of doubling up on probiotics and garlic, I was expecting a herx for the next few days, if it was indeed yeast. I've never seen yeast respond so quickly (even in my personal experience - sorry for oversharing). How do you vote? Yeast? Or was it something about not giving abx last night, aside from yeast? If so, what the heck?
  12. Oh TMom, I knew you were having a rough time of it but hoped things had improved. How long until you get Igenex results back? The lyme WB results look like it's at least worth doing the combo abx for the time being. Hopefully the Igenex results will give you a better idea of whether there are additional bands, in which case you'd have more evidence you were on the right track (or not). Until you have those results, it's probably premature to make plans for IVIG or Pex. So try your best to plan financially for some sort of medical expenses (lyme is a huge money suck) but try to not rush into something. While you wait for Igenex results, read up on detox and try a few things. You know from past responses, your DDs behaviors are infection triggered. So whether it's lyme or something else, adding detox will help the body and help you feel like you're doing "something" while you wait for the results. You can go to google books and type "lyme detox" and get some good book excerpts. While not technically correct, I put my detox thoughts into 3 categories - 1. managing inflammation (not really detox but I put it in the same bucket) - resveratrol, motrin, enhansa/tumeric, anti-yeast supplement(s) 2. increasing glutathione (here's a great intro http://www.huffingtonpost.com/dr-mark-hyman/glutathione-the-mother-of_b_530494.html ) - you can use alpha lipoic acid, NAC, others that I'm forgetting. 3. binders and liver support - milk thistle (silymarin) is great for liver protection. So is NAC. And with a heavy abx load, liver support is always good. However, if your DD has ever had trouble with any sulfurs (like gets itchy from epsom salt baths, has trouble with sulfur drugs like bactrim), be aware that both milk thistle and NAC are high in sulfur. (which 23andMe tells me is a problem for my DD). As you attack an infection, the dying bacteria often release toxins and create a herx. Things like activated charcoal, bentonite clay, psyillium husk - can absorb those toxins in the bowels and help you excrete them/not let then be reabsorbed. I think I'd wait on the tindamax until you have some sort of detox plan in place (and by then would have Igenex results). And double check to make sure you give the proper dose. When we started it, I gave one pill per dose. Then found out three weeks into a horrible herx that I should've given 1/2 a pill per dose. Won't make that mistake again! Some people herx only for a few days and then feel much better for the rest of the week. My DS reacts strongly to it (even when I give the proper dose ) so we needed to go much slower. It's one of those abx that seems to be really good or really harsh for you. While you won't know until you try, it might go better if you're doing detox. Another option is to only do one dose the first weekend. Then 2 doses the second weekend. If she stays steady, build up to the 4 doses (Fri nite, Sat morning, Sat nite, Sun morning). You don't have to jump into the full 4 dose weekend. You can build up and you can also back down. No medals for killing the patient and the patient's mother in the process of killing the bacteria. I've typed and erased other ideas. A small dose of niacin (50mg) helps my DS with rages and I feel ok giving it to him now because I know he's an "overmethylator" and has certain gene mutations that make niacin (which soaks up methyl donors) a good fit for him. But it's bad for my DD because she's an undermethylator and except for the time I overdosed her on methylfolate, niacin would be the exact opposite of what she needs for a rage. So at some point, you may find it worthwhile to do 23andMe so you'd have a better guide of which supplements would be helpful and which ones wouldn't. But hey, in the middle of a fit, it might not hurt to slip 50mg of niacin into your DD somehow and see. Depends on how desperate you feel. It's helped us more than once. I wish I had better advice. It's such an individual situation. The next time you head up this way, let me know and I'll meet you for lunch and at least lend you a shoulder. Is she at least still eating?
  13. I would say treating for lyme makes a lot of sense. This link explains the significance of each band. http://www.anapsid.org/lyme/wb.html
  14. Wendy, thanks for the encouragement. Yes, you can bet I'll keep digging. Part of my nature. I read thru your link and thru other babesia lists - none of it hits home. I've been feeling like we're done with the lyme stuff - or at least to a point where it's at a low enough threshold where life has almost felt normal for months at a time. I suppose I should stay open minded about poop but at almost 11, DS is far less cooperative than he used to be and really doesn't want his nutty mother shoving a pan under his butt before he uses the bathroom. But you give me something to mull over for the next week. We're just so close to the finish line. His brain is sharper than it's been since he was a toddler. He is indistinguishable from his classmates and even in better shape than some. We got an email last week from a teacher - one that wasn't meant for us but instead was meant for parents of one of my son's friends (our email name autofilled and she hit send w/o catching the error). This friend struggles with ADHD and the teacher was updating the parents on some issues. I was like "wow - how cool is that - it's not my son she's talking about!". (yes, I know it's bad form to revel in others' problems but sometimes, you just jump for joy anyway). I haven't even emailed the teachers about this bout of OCD because they won't see it and things are so normal, I'd sound like a hypochondriac. DS really looks very, very typical - which is light years from where we started. So I can't seem to find room in my brain to think we're sliding backward in our lyme war. Yes, there's films and a strengthening immune system that could be going deeper at finding infection. But lately, my journey has been about less is more. I've found nice improvements from taking away supplements that are no longer (or never were) needed. The kids are gleeful that that "only" have to take 2-4 pills at breakfast or bedtime right now - it's time to shed some layers. I'm starting to feel like abx may be part of the problem rather than the solution at this moment - something I never thought I'd say. So maybe poopology 101 is in order along with a discussion about yeast. I appreciate all your support and ideas.
  15. Please give us the cliff notes! Sounds like a great opportunity - like a day of chocolate without the calories. Let us know what goodies you learn about!
  16. JPdad - I have to disagree and PANS and lyme being two different things. Pandas was renamed PANS due to a number of parents reporting back to Swedo et all that Lyme and mycoplasma and other things were triggers. The Lyme spirochette and the strep bacteria both share very similar M proteins on their outer surface which show up in research as potential agents in molecular mimicry, as the basal ganglia, heart and other human organs have similar-looking M proteins. So biologically, there's a lot of similarity between the two bacteria and how they may cause neuropsych symptoms. Yes, they are two different bacteria, but cousins in many ways. So Lyme is part of the PANS umbrella. That said, as Rowingmom points out, the treatment paths can be different and I can see where those conversations would be frustrating for a non-lyme parent. But not much different than my needing to skip threads about IVIG - I don't share the majority view on that particular treatment and so I avoid those threads as I usually have little to contribute to the discussion. I like the idea of having one place to share conversations about methylation, diet, detox et al. But if having one combined forum causes people to stay away, that would be unacceptable. But it is interesting that for the past few weeks, conversations on both forums had died down. Since the upgrade and combined forum, the conversation seems re-invigorated. Maybe it's a short-term effect. I didn't see the FB thread but I too cringe when I hear sweeping comments about Lyme - and I'm a lymie. It makes me shy away from posting anything on FB - the whole tone is snarky and catty and I hate having conversations in sound bites. Which is why keeping this forum a "safe haven" is so important. The more forums I visit, the more I appreciate how unique this forum is in terms of civility and educated parents. Regardless of whether this stays one forum or goes back to two, I certainly appreciate having this place to call home. If it weren't for all the zany, geeky, passionate ideas that have been thrown at me over the years, my kids would not be (almost) well now.
  17. Christianmom - Thanks for the lab links! Unfortunately, they can't be found when I type in our state (CT). So not sure I'll be able to get them done here, but I'll talk to the LLMD. SFMom/Smarty/lfran - no symptoms of any sort of infection. I know parasites can be stealthy but there's nothing aside from OCD. No erratic behavior, no physical symptoms, no gut distress or cravings (other than a 10yo boy who's always hungry). But I'll run these ideas by the LLMD. Cobbie - yes, yeast popped into my mind this weekend. You know - just after I handed him a basket with 20 pounds of processed sugar! (kidding about the 20 lbs). Will definitely ask about a candida antibody blood test. I'm also going to stop Vitamin D supplements tho I'm doubtful that's the problem - he's been on D for over a year without issue. But just to rule out...I may also break out the motrin or enhansa to see if that helps - tho it's always helped more with the mood/impulsivity piece and not the OCD piece. TPotter - my LLMD is an ART practitioner but it's not a diagnostic tool I can embrace. I know some swear by it and I mean no disrespect to those who are guided by it. But it's never been something I could wrap my brain around. Tho my LLMD has offered in the past, it's something we agree to disagree on. We're not spending any money on any tests at the moment (aside for 23andMe and regular CBC panel to keep an eye on liver and general health). The being broke part comes from a half decade of medical treatments/tests, not from any recent tests. I just want to avoid going on an expensive scavenger hunt and know that the moms here often have great ideas. Thank you all for your thoughts. Gives me a good starting list for next week.
  18. Others can chime in as to whether Courtagen was helpful or not. I have no personal experience. But in addition, I'd highly recommend the 23andMe test for $99. It unfortunately takes 2 months to get results, but they've been very helpful in guiding us on diet and supplements. Once you get the results, you can post and I'll walk you thru the steps to get the Yasko-like report and use the heartfixer writeup to interpret the results. It won't give you a silver bullet but it will let you know for certain what to avoid and what helps and also what you can do to reduce risks for adult diseases such as heart disease or cancer. etc. In the meantime, have you contacted Mass General or the IOCDF about finding an ERP therapist who does home visits? Dr Jenike (who's an adult therapist) made his name in part by being someone who would treat homebound patients and treating the "untreatable". They may know someone who does the same in your area.
  19. Does this mean our kids can sue us, their parents, because we were negligent and "allowed" them to contract TBIs when we should have known better? I want to feel sympathy for the parents - they're in the same boat we are - but they are so wrong in directing their anger at the school. They should instead be questioning whether their daughter is getting adequate treatment from mainstream medicine, which I assume if following CDC and IDSA guidelines.
  20. No augmentin. He's been on zith+rifampin since sept. Then we added augmentin for 3 weeks in Feb/Mar and that made no change (had helped several times in the past). Now back to just zith+rifampin. We are doing CBT except he often just finds it easier to give in. It's not distressing enough for him to want to do the work. Could he live with it? Yes, he's living with it now and only mildly concerned about friends noticing. But that's not acceptable to me - because I know this beast. Give it an inch and soon it's demanding a mile, then more. Besides, it's always been caused by something. Which means I'm still missing something. And you know me. I'll tie myself in knots trying to get to the bottom of it.
  21. DS10 is 2.5 yrs into lyme treatment. The first yr, we made steady progress - saw herxing and rotated abx and went up and down the way you'd expect. We did cyst busting which was really traumatic. When we stopped, life was good but then we stalled. Then ruled out mold and found pyroluria. That jump started progress in a big way and we did 9 more months of combo abx and saw more gains with much less herxing. So last May (18 mos of treatment) we weaned off abx and DS was abx-free all summer. He did ok for the first month, then second month he got more irritable and the third month, some OCD and body pain returned. So he went back on zith + rifampin last Sept and he climbed back up to 90%, then 95%. He enjoyed most of the school year between 90-99% and has had an awesome year of healing and making up for lost time academically. He survived the flu at Xmas without any OCD or Pans symptoms. In January, I did two weekends of tindamax but DS got very angry and he lost some friends for awhile. So I stopped. No herxing per se, just angry. So I stopped. At our last LLMD visit in Feb I was thinking we were in the homestretch (which of course you know is just begging the universe to knock you down a notch). At the end of Feb, OCD crept back in. No illness, no swollen glands or congestion. Nothing unusual healthwise. Happliy, no brain fog, which in the past has always accompanied backslides (perhaps b/c in Dec I added phosphatidylserine). It's been mild, subclinical, "feels right" stuff. No one notices except me and DH. Hovers between a 2-3 on a scale of 10. But it isn't going away (6 weeks now). LLMD added augmentin at my request b/c in the past, adding augmentin has returned things to baseline. This time, it did nothing. I just got DS's 23andMe results back and I stopped a few supplements that were "bad" for his mutations - still no change. I've added a low dose of a B complex which is supposed to help with some overmethylation issues. Not much change - a little mellower but no change in OCD. We see the LLMD in 2 weeks and I'm not sure which avenue to pursue. Do we stop abx and see where we're at? Is this a methylation thing? How do you know if lyme is still the issue or something else? What labs can be run? No point looking for lyme antibodies. Maybe a C3d? Not sure the C3a/C4a is still a valid measure since Quest doesn't use Jewish Labs anymore, Not sure LLMD puts a lot of faith in CD57 results for kids. Guess I'm looking for a way to see if lyme is still part of the problem or if it's more of a "biological" problem like methylation or imbalance. He feels "off" and has OCD. But the other stuff that always came with lyme flares is gone. I'm tired of the merry-go-round and don't have tons of money to run every test under the sun (5 yrs of Pans crap leaves you pretty broke). He's always been able to handle viruses "normally" - they aren't a Pans trigger for him. Looking for targeted ideas....
  22. Try to keep careful notes. Starting augmentin and upping the Luvox on the same day will complicate things and make it a little harder to know which one - or both - are responsible for any improvement. If you're going to do genetic testing, are you talking about 23andMe or Courtagen? I'm really not clear on what the courtagen testing is for. Is the dr. saying there's a link between mitochondrial disease and OCD? Glad you saw a small improvement last night. It tells you improvement is possible. I know it's very painful to watch your child be so lost but many of us have gone to dark places and gotten our kids back. Always have hope.
  23. You can start at these two threads: http://www.latitudes.org/forums/index.php?showtopic=3928 and http://www.latitudes.org/forums/index.php?showtopic=18905 These are 'Pinned" and are always at the top of the screen when you first come to the PANS forum. You may also want to show this to your doctor: http://ocfoundation.org/PANDAS/ Then feel free to ask more questions. Don't be surprised if the next doctors you see also dismiss Pandas. Our community's response to "It's rare" is "No, it's just rarely diagnosed." But hopefully someone here will be able to help you find a "local" (i.e. within a few hours drive) doctor to help. One thing to consider tho - this is not a private forum and your posts here will be archived for a long time, easily found through a google search. If you've created an account using your real name, you may want to create a new account with an alias and you may wish to edit your original post and instead of using your daughter's name, replace it with something like DD16 (darling daughter who is 16). But certainly up to you.
  24. I totally understand your dilemma. Did abx help in the past? Or was it just a way to prevent illness from setting you back? Have you re-tested liver? What I found after doing 23andMe was that some of the supplements I was giving was good for one kid but bad for the other. Even things that are supposed to be good for everyone - like milk thistle - was bad for my DD because it's a sulfur that my DD has a CBS methylation block that makes it hard for her to process sulfurs, which instead poison her with ammonia. I stopped the milk thistle and the garlic (which I was giving her to prevent yeast) and I also stopped the B6 which is so good for detox (unless you have CBS issues). She improved over the past 2 weeks. I re-started the B6 and within 2 days, she was ramped up with anxiety. Stopped it and she's happy again. Conversely, I stopped some things for DS and am seeing that he's slipping. He needs some of the things I had stopped. So I think what you're going thru is a normal "spring cleaning." Time to stop and reassess. And unfortunately, sometimes the only way you know something was working is by stopping and seeing what happens in its absence. Like when your spouse goes away for a business trip and you initially enjoy having the bed to yourself but then (hopefully) miss him in other ways and are glad to have him back home Of course, someone is bound to ask you if you've ruled out other infections, so I'll put that on the list. The fact that he hasn't enjoyed long periods of wellness suggests that you haven't gotten to the bottom of things yet. But whether that's due to infection or gut or methylation or .... well that's the million dollar question. Maybe if you're inclined to list what you've tested for, if you've done stool tests or tested for yeast, we can help you brainstorm. Out of 10 ideas, maybe one will strike a chord.
  25. Couldn't agree more. I think it's fine for one or two posts about lyme & co. especially to a newbie or to someone who posts about symptoms that are less than traditional pandas (e.g. drenching night sweats that could be babesia and isn't common to Pandas and perhaps a parent doesn't have that info yet). But we aren't here to diagnose or "convert" others. Throwing out ideas to explore is different than badgering and tone of post is critical to the health of this community. I think it's important we self-police and if you see a thread taking a negative turn, I hope everyone feels comfortable speaking up and respectfully reminding us to get back on point. Would hope to see "some things to consider consider," "in my experience," "maybe" and not "should," must," "definitely"... Same would go to PMs - if a parent chooses not to pursue your thoughts in a public thread, please don't continue to badger in a PM. I have strong feelings about certain topics within Pandas based on personal experiences. Sometimes I try to insert an "opposite" view for balance but if I ever come across as too negative or disrespectful, I'd hope that someone would let me know (in a kind way). I belong to a FB group that struggles with the same issue. For the most part, there's tolerance but unfortunately, some forget to rein in their passions. Let's let this pull us together and not apart.
×
×
  • Create New...