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SSS

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Everything posted by SSS

  1. I just wiki'd it, sounds awful, and something a regular Dr. would never think of- but, sounds like a strong prescription antifungal takes care of it...
  2. Thank you LLM! I did some more digging, and did learn what the 23andMe does disclose about Alzheimer's - and statistics with the variants, but I did not know if it came blaring at you across the screen with the results- so thank you for clarifying that :-)
  3. Hi there- Alright- I know my dd8's MTHFR status (double A1298c, therefore I have 1 A1298c) I have been mulling over doing 23andMe for both of us, however...(and I've been to the website) Am I going to get a graph back telling me my percentage for Alzheimer's and Cancers? Because, I do not want to see that- I really don't. Before I found out I have chronic Lyme, I secretly worried I would have Alzheimer's - my grandmother had it (and a mouth full of amalgams) :-(. It was very late on set, and my memory is better after aggressive Lyme treatment, but I do NOT want to see any graphs or percentages telling me I'm at a higher risk- otherwise, might just mortgage out the house and head for Bora Bora after all ;-). But, really, it would always stick with me, and I already am health conscious/ living clean. Thanks!
  4. I'm not sure about d-lactate, honestly, but Custom Probiotics makes a d-lactate free probiotic http://www.customprobiotics.com/custom-probiotics-d-lactate.htm It is a powder- hard to mask the flavor if mixing- before dd swallowed capsules, I'd mix probiotics in stevia flavored coconut ice cream (only time she got it) when she was GF/CF.
  5. The distended belly, constipation, sounds like YEAST overgrowth to me- especially if you have not been vigilant about quality, high count probiotics to replace the good flora the daily antibiotics are wiping out- how's the diet, low sugar? I have treated yeast numerous times in my dd, long before antibiotics came into the picture- I always see a correlation between large belly/ constipation/ bad behaviors, and yeast. We had been off antibiotics for months, still gave quality probiotic (currently Custom Probiotics CP-1, no strep strain), but had to do 20 day antibiotics when Impetigo came in- anyway, after antibiotics, I started Diflucan (for yeast) and right away, calm, better behavior--- As for the rest, pp has a good point...
  6. Well, this is very interesting. I visited both links, thank you. My dd8's weakest academic link is reading (my personal passion) She will NOT pick up a book on her own- and cannot tolerate more than, say, 15-20 minutes at a time, furthermore, I MUST sit next to her, and she prefers to read out loud to me (and sometimes I take a turn when she gets weary) She reads out loud fast- sometimes skipping a word, or actually substituting a like word. I couldn't glean from what I've read if this is a sign of CS- she spells beautifully...
  7. I bet Dr. M is going to strongly advise going gluten free. The good news is that there are a LOT of gluten free foods now available (breads- bagels, muffins, pizza crusts, frozen pizza's, etc.) in just about every grocery store. I did 100% gluten, dairy and soy free with my dd for 2 years- she was younger, before PANS- it did make a big difference and helped heal her gut- and, she actually started eating better- willing to try meats, proteins. Anyway, she eats it all back again now, but ironically when she got to go back to gluten, I found I had to go off. I did, 100% (has to be ALL the way) for months, tried to add it back in, and had more trouble- so back to GF for months again now- and maybe forever- don't know. All this to tell you it may be easier than you think, with the foods that are now available. It can make a big difference in inflammation, if there is a gluten intolerance, which is becoming more and more common.
  8. Obviously I'm no Dr. or expert, but wish I could help. What I thought reading your post, with the titers so high, some infection must be high, and when you attack it like you are with full dose antibiotics, there is some 'die off' and the body needs to process this stuff out. And it doesn't feel so good going through it. Are you taking a high count, quality probiotic at least 2-3 solid hours away from the antibiotics? Liver support is also important, like milk thistle, or ALA supplements, drinking lots pure water, very low sugar, healthy diet. Epsom salt baths help, with water warm/ hot enough to sweat- walking, and rest. Ibuprofen can help the neck pain, gentle massage can help. Make sure bowels are moving regularly. When I was on Bicillin shots, about an hour after receiving it, I would be completely wiped out- need to lay down and shut off everything. But helping your body process what's happening may make it easier.
  9. Not sure what you mean exactly, but if you are asking: That they can sort of hold it together before all heck breaks loose? Yes, my dd8 holds it together ALL day long in school, and when she is not doing well (or flare) literally, as soon as I pick her up from her class and put her in my car, all heck breaks loose. I've even dosed ibuprofen in the car. She has never had an episode at school, never a vocal tic (we've never had other tics), never talked back at school, etc. But I could tell you some after school and in the car stories. I have a van, and changed the seating so she sits in a different row than her sister. We wake up early here, and actually do homework in the mornings before school starts. After school I feed her right away, let her do her thing.
  10. What have you, hooked up with my kids for the hard sell on getting an indoor cat? ;-). Just kidding, good information!
  11. *It is an interesting topic, I have seen it discussed before among Lyme folks, and obviously, there is no right or wrong answer! I remember in Pamela Weintraub's book when she said they sold their house, and she moved the family to a concrete high rise condo in a city. I have heard Lyme people say: My dog (or owning a dog or cat) brings me so much joy, happiness, there is no way I'll go without- I'll spray the yard, Frontline collar them, and if I have to pull off a tick, okay. I coincidentally haven't owned any pets since the feral outside cats adventure- with a career and kids coming along, it felt like too much responsibility. My older DS has asked for a cat for years. I've held my ground. Ironically, my youngest checked out a kitten book and just this morning explained how we could get one, take it to the vet for claw removal, said she'd take care of litter box (uh-huh). So I'm the Scrooge. But never say never. *sigh* I'm content to walk my sidewalks in my neighborhood and contemplate the large oaks and flowers in the yards for my commune with nature, but I can't go hiking anymore- I would think of nothing else but ticks. Maybe crazy, but my truth. My older DS goes on fishing trips with his Dad- so, I implored to both about tick safety, and off they go-I don't control everything, lol. Luckily, my current husband has never been a camper or hiker- so no loss here- it's for sure a personal decision. But for lower immune challenged folks, good reminder that the pets may affect you/ or need care to stay healthy themselves (and the worm issue- ye-gads.)
  12. Thanks for the update--- sorry it's not helping, either :-( I agree with Nancy (as usual) maybe go down to very small dose? I have been doing a lot of reading on the effects of excess glutamate - have you tried cutting certain foods out (like gluten, feeds it big time) Also put my dd8 back on PharmaNac (studies done by Stanford University on this product) And, some other theories about noise sensitivity lack of magnesium, or yeast overgrowth... meanwhile, I'm here on my couch with my earplugs in, lol. Let us know how you are doing--- thanks again---
  13. I wish I was, the speakers sound great, and I would love to support with presence. Lack of funds and lack of child care prevent. That's the hard thing with Lyme rally support- often the people are not well enough to travel, or insufficient funds do to paying for proper treatment insurance companies will not cover. Please post feedback if you go!
  14. Oh your post tugs at my heart. My first thought is the SSRI- concerning, as the suicide issue is the 1 big scary red flag side effect. That is what is sticking out for me. Maybe as others suggested, he doesn't need it anymore.... I have a 15 1/2 year old son, 16 this year. He is not PANS, doesn't have OCD, but has, shall we say, an intense perfection side. He has received an 'A' in EVERY class his entire life- even PE- advanced math, advanced science, advanced english. He graduated valedictorian of his 3 year middle school. If I could have had that tattooed on my forehead, I would have. When in 8th grade a FILM class project was proving difficult and perhaps late, I actually said 'By God you will not destroy this grade point average with FILM class. Get it together.' He did. He always seems so capable, always been independent, confident, even arrogant. His Father (my XH) and I are rather intense. Thank God for my husband, Ryan's stepfather for nearly 10 years, who brings lightness, laughter, and a deep friendship of respect with Ryan. He taught him how to golf a few years ago. Okay- high school starts last year. Now, I'm guessing with girls, they process their nervousness, anxiety with drama out front - seems the boys (or mine) keeps it bottled up, being 'cool.' He tries out for the golf team- 1st sport ever- REALLY wants it- stressful! Golf for perfectionists is stressful! Makes the team. Finally, I get all alone time with my son driving him to and from the golf courses. He's exhausted. I check his grades online. Late assignments! As I'm driving, I say, how can this be?! What?! My 5'11, lanky, stoic son bends over, face in hands, and starts sobbing. Just breaks down, crying. 'You put so much pressure on me. You expect too much from me.' I pull over. Choked, touching him I say: 'Ryan, I expect so much because you've always given so much. You've given me greatness.' I tell you what. Very revealing, pretty deep. I had to get honest- perhaps those 'A' grades, the never in trouble child, validated me on being a good parent, when I often feel like a not good parent to my 8 y.o. PANS, and even the 6 y.o. who has taken the brunt of a lot of it. I share all that to affirm, maybe, what MomwithOCDson said about 15 yr. old boys and going into high school- especially the high achieving ones with pressure, either from themselves or parents (me) You are a GREAT mother- he is lucky to have you---- and what a gift he can share openly with you---he'll be okay---- It takes some getting used to, high school.
  15. It very well may kill you- attacks the heart, spirochetes have been found in Alzheimer's brains, Lyme patients in wheelchairs and bedridden. Babesia is just like malaria. I could go on and on, but, what's the point?
  16. Right, sorry, again, not saying send the kitties off- and Dr. Kling. comments are sometimes extremely opinionated for what he's thinking at the time- Not having a memory of tick bite or EM rash is VERY common, and I spent my youth and 20's hiking ALL the time- my cat story- lived in a Bay Area town that was backed up to mountains/dense woods, on an inlet, used to be an old fishing village, huge population of feral cats- Mama cat and tiny kittens I spotted, they were WILD- took me weeks, food, coaxing, but those little kittens were cute buggers- scratched and bit picking up. People can hold Lyme and co. in their bodies for years, not realizing, then sometimes the immune system takes a 'hit' (having a baby, major stress, etc.) and symptoms emerge, no longer can be ignored. Or, just feeling like junk all the time or in a state of high anxiety is what 'normal' is to you- But, the shock and PTSD of Lyme and co treatment, transmission- changes people. Hiking and cats, dogs, I have given up. I know pets give a tremendous amount of pleasure and love in people's lives- and, that a piece, too, in life.
  17. I really don't want to make everyone paranoid (sorry, too much information sometimes) seems possible from actually cat, depending...
  18. pr40, I'm sorry, I guess my post wasn't clear- None of our insurance paid pediatric Dr.s we've seen have had a child with PANS- or autism, it seems. I believe (know) since these Dr.s are paid by the insurance companies, they don't want to go near PANS or Lyme with a 10 foot pole. Our current Pediatric Dr. (not Kaiser, we got off that nightmare) does diagnose all the potential autism spectrum / ADD children for a large practice -and has an interesting base of experience because of this- and he is up to date/ very well read on current studies, etc. But treatments offered are only 2: The pharma drug route, or, the referral for speech therapy, behavior therapy - the parents get to choose. Antibiotics will only be prescribed for a typical, hands on bacterial infection. He will generally not comment or share with me his thoughts on biomedical (special diets, supplements) but I think he finds me interesting, lol. Why do I still see him for my dd? Maybe I'm lonely, lol. I don't know. He and I go back and forth. And I have tried some medications for my dd, when things became dark here at my home- He was there for me for that- he got it, he believed me. Recently we have Impetigo and he is prescribing appropriate antibiotics for that- and, I have 2 other healthy, neuro typical children he cares for when necessary.
  19. This post won't win me friends with cat lovers. I have a very strong suspicion that I got my Lyme/ Bart/ parasites from trying to tame a family of feral cats outside my front door 16 years ago (bit/scratched). No memory of tick bite, ever (tested Lyme and Bart positive- currently undergoing/ ongoing parasite treatments) Dr. Kling. is no cat lover; his quotes: ' Cats are forbidden. They carry toxoplasmosis, viruses, Bartonella, XMRV-like viruses, etc.' 'Cats are not safe for us. Dogs of Lyme disease owners have average lifespan of 8 years vs. 12-14. If there is a plague on the world right now, it is cats. Dogs carry Bartonella but attract bugs to them rather than to their owners. They have parasites. Dog owners need to be de-wormed twice a year.' (Below from a woman attending Dr. Kling. seminar) He believes that bartonella is one of many critters that prefer humans to their feline hosts. The bugs jump and the whole family gets sick. Solution: Not cats on the bed or sofa. They belong outside where they can catch mice, their reason for existence! Excerpt from an article 'How your cat is making you crazy' The Atlantic (on Toxoplasma). ( Strong article! Don't read/look up if you think it might be too much.) 'Webster is more circumspect, if not downright troubled. “I don’t want to cause any panic,” she tells me. “In the vast majority of people, there will be no ill effects, and those who are affected will mostly demonstrate subtle shifts of behavior. But in a small number of cases, [Toxo infection] may be linked to schizophrenia and other disturbances associated with altered dopamine levels—for example, obsessive-compulsive disorder, attention-deficit hyperactivity disorder, and mood disorders. The rat may live two or three years, while humans can be infected for many decades, which is why we may be seeing these severe side effects in people. We should be cautious of dismissing such a prevalent parasite.” ' ** sorry to be DebyDowner on the kitties. I know, I used to love them, too. But no more :-/. Now, don't all go and run them to the shelter, but just be aware-
  20. For some 'woo woo' about why the universe feels off right now, we are building a full moon, will be here in Wednesday. For the insurance medical professionals, I think they 'have' to believe it- it's their job. It's their set formula, it's what they do- it's how they live with themselves- Our Pediatrian, with whom we have a long history with (except for a 2 yr. break w/ Kaiser, and he wasn't dd's infant Dr. when she had unexplained fevers and jump off head growth chart) Anyway, he is VERY intelligent - member of the Mind Institute, leads a very large pediatric practice, does all the spectrum diagnosing. He listens well, and respects me, and I am totally honest with him. I mean, I lay it all out. But he is not allowed to talk special diets, supplements, Lyme (he just says: 'It's controversial.' I ask: WWYD if it were your daughter? long pause....'I'm not sure') his insurance companies, who pay him, don't want lawsuits- if he recommends, say, a probiotic, if there is an adverse reaction... see? What he has said in not so many words: this is his job, it pays well, he has a family, does he love it? No. Does he genuinely care about children? Yes. I would love to get him off site and off the clock, a pot of expresso, and go around verbally sparing, debating, and picking his mind. Insurance dictates I get about 15 minutes, and he can't share his real thoughts and beliefs, theories. Last Spring we saw the top pediatric neurologist in the top metropolis hospital - Again, I very much liked this MD- extremely intelligent- almost cathartic to pour out my experiences over 3 appointments about raising my daughter. But when I said: You cannot tell me there is not a REAL, SIGNIFICANT medical component to this: How can you explain how special diets, first trials of Azithromycin, and our 2nd HD IVIG, completely returned my child to content, happy, social, etc.? The results didn't last, but what does this say? His answer: Growth spurts. So, we just go on and do the best we can- and you never know what you've shared, your pain and story, what impact or help it can be down the line to another without you ever knowing it. There is a little girl in my youngest child's 1st grade class, who missed a day last week, 'unknown fever' her Mom says, and the little girl has face ticcing. I have no idea what to do with that--- should I say something? Will I be crazy lady, freaking this Mom out? When my youngest was in K last year, I had to stop volunteering in the classroom for a few months, so disturbed was I by the number of children with issues- some literally unable to control themselves, 1 child couldn't speak, some unble to comprehend hardly anything. So this is the 'new normal' ? I don't know. I don't think we are the crazy ones. I think we are the awake ones.
  21. I have to think about economic implications, as well. Only people who can afford PANS treatment get it. Too many variables with Dr. K's ethnicity pattern, IMO.
  22. Well, that is interesting about the Augmentin and glutamate, which I am convinced is an issue with my dd. We tried Augmentin 1 time (by itself) a few years ago, and on the 2nd day, at dinner time, she slid off her chair, onto the floor under the table, and wouldn't come out, wouldn't talk, curled up. It was awful. At the time I chalked it up to being too harsh on her stomach, pulled it ASAP, and never tried again. Now of course, for some, Augmentin has been a big ticket/ healer. Saving Sammy, right? And some others on here. It's a fine line at times, I think, and unfortunately experience, arming oneself with knowledge, knowing closely your child (or self) and plain intuition come into play- and a trained Dr. for advice.
  23. Trying to decide how to word this, coming up unable to express my thoughts on this without being politically incorrect. There is now a vaccine for autistic children to help their 'gut issues' http://www.sciencedaily.com/releases/2013/04/130424112309.htm Science daily reporting this, in the journal titled 'Vaccine.' Sooooooo. All the mothers with children on the spectrum who went to their Pediatritions and expressed dismay and angst at explosive diarrhea, constipation, severe food restriction, head banging (from pain) Tried GFCF with results, improvement, tried probiotics, were scoffed at, then asked for cultures to check for yeast, clostrida, were told no way, this is not an issue. But now that there is a VACCINE, we can acknowledge (as in the above article) that 90% of children on the spectrum have severe gut issues/ dysbiosis. To this day, NO regular Doctor utters a word about probiotics when they hand over a prescription for antibiotics. And they won't, until Pharma makes their own probiotic that can be prescibed/ profit. I'm sorry. I couldn't hold back.
  24. Well, I am certainly not an expert, let me state that upfront. Few thoughts I had reading your post: Really great the C4a test is normal! My understanding is that means no excessive inflammation going on caused by Lyme or mold. Just because you test for a 'dreaded' gene does not always mean you have mold toxins.... And lastly, the saying is Lyme usually never travels alone (meaning there is usually a co-infection) the mood issues could be Bartonella - don't know if you tested or tried treatment for that... Metamatrix has an excellent stool test that checks yeast, bad and good gut bacteria, and parasites (although parasite testing is hard to get an accurate positive) Have you done a cyst buster with the Lyme treatment? I'm glad your other child was able to complete treatment rather easily- that's great!
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