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SSS

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Everything posted by SSS

  1. Trust me, nobody dreaded going gluten free with their kid more than I did. But it made a big difference. My dd was 4 at the time, pickiest eater you'd ever seen, red hot temper. I went cold turkey. The grocery stores now provide easy GF alternatives. After a few rough days, she started eating protein and meats, we couldn't believe it- never could get her to before. 2 months after going GF, her preschool came up and said: I don't know what you've done, but she has blossomed, come out of her shell. Looking back, I believe it was the reduction of inflammation. I had her GF/CF for 2 whole years, worked on her gut, she was yeast queen. Introduced gluten and dairy back this last January, with digestive enzymes- ones that have DPP IV enzymes that help break down these proteins. Thrilled to reduce my grocery bill, the next Dr. visit for me showed ME highly intolerant to gluten. Oh the irony. So I've been 100% gluten free for 9-10 months. My digestion is better. There are Lyme folks who will swear pain is reduced being GF. You can always try it for 2-3 months, go back if no benefit.
  2. Hi Ellen- I don't think many here are doing Bicillin shots, as primarily it is children here, but wanted to respond. I am doing the Bicillin shots, 2x a week, almost a full 6 month completion - I think I've taken them as far as it can go, and will start a new protocol next week @ appt. One time I asked: How long do people do these shots? And was told: Usually it is stopped when the patient is sick of it, maybe around 3-4 months (not sick from it, sick of the whole shot ordeal itself) I wanted to stay with it because I cannot do IV, and heard these were near the next best thing. As far as the fish oil, I have read people with KPU issue have trouble with Omega 3 (maybe 6? not the expert) That is another something I am testing for-- HTH a little.
  3. Hi Julia, I was just reading on a yahoo board I frequent, and some of the feedback there was the GcMAF wasn't working well with the kids with PANDAS and inflammation- I think you get your son ART tested for everything, tho, but just thought I'd share. Dr. Bradstreet in the autism community is doing the shots, but they were stating the rest of the DANS! were staying away.... anyway, best wishes---
  4. Well, it is magnesium, which can produce loose bowels if too much, but we've never seen that with the bath. Epsom salt baths over here have always been a good thing-
  5. We have not been treating that long--- what remaining symptoms are you seeing? I do very much understand treatment fatigue, and am battling that personally. Hang in there-----
  6. Okay, here is what I'm seeing, , FWIW. She's not gluten free, is she? If she is not, it is saying she needs to be! (sorry). And only 100% works. This test looks good to me- no yeast overgrowth (which is why it couldn't pick up recommendations for anti-fungals) and no bad gut bacteria (like c. diff. or klebsiella pneu.) It does pick up you are supplementing sacc.b. Parasite unknown: could be babesia, could be protomyxzoa Fry bug, could be plain old nasty parasites, but indicates a parasite. The lactoferrin high is interesting- indicating inflammation- again: GLUTEN.
  7. Maybe try 1 of the culturelle first. This is a good one, not overwhelming. Not sure which Custom Probiotics you have there, my dd did not do well with their d-lactate free brand, But the others they make: 11 strain, 6 strain, and CP1 dd has done very well on (and these do not contain strep strain- we avoid those) Klaire therabiotic detox is a very good one, and also like the brand Theralac.
  8. Hi- I just sent a test in for myself on this- I don't think it's an issue for me, however a statistic out there says something like 80% of Lyme folk probably/do have this issue, and, super smart LLM says it was a huge piece for her child (re: big healing) so, I sent in the test. Honestly, if it comes back positive, sure, I'll show my Dr. (who has never mentioned it to me) but I will just buy the Biopure Core supplement and go from there... By the way, our LLMD is also of the belief: treat the infections, and the rest of everything will fall into place (including any viral issues)
  9. Maybe the reaction to milk thistle was toxins being displaced? Liverlife by Bioray Xymogen DPO medcaps are excellent products, but also contain some milk thistle. Other separate things to help liver: Glutathione ALA NAC
  10. You could give them the fact that 70% of ALL antibiotics sold in the USA go to Livestock Animals. Are they aware of that? If their concern is so great, are they buying and eating ONLY grass fed, organic meat?
  11. I still think probiotics are necessary, especially with her history of c. diff. infection. I like CP1 from Custom Probiotics, it is a pill. Also, I think some liver support is important, like a capsule of milk thistle. Epsom salt baths before bed used to make sleeping at night much easier for my dd for a long time.
  12. If I lived relatively close by, I would be there. It is beyond my comprehension how this can happen.
  13. **whoosh**. Well, goodness. I've never heard of 1/2 Motrin having that reaction in any kid. Honestly, I don't know what to advise for products- I don't feel comfortable in this case. But I just can't help but feel her foundation needs fixing first- like her diet and gut. Have you ever worked with a DAN! (Defeat Autism Now) type of Doctor? This is what they do- run MTHFR tests (genetic mutations for inability to detox well) food allergy and intolerance test panels, yeast, bacteria in gut, and slowly work to heal from the ground up, with correct supplements picked for her by the Dr. Is your current LLMD checking her liver?
  14. Your LLMD should talk about detox. It's 50% of the deal. When you kill these infections, they release neurotoxins, which makes one very sick. And the liver and gut will blow out from the harsh drugs and die off unless they are supported. It depends one what your daughter is willing to swallow and take. And if she is not willing, you will have to make her, or use all pills for detox. My daughter, since we've been at this a long time (bio-med, not necessarily Lyme treatment) is used to taking an oral syringe of 'stuff' like homeopathic drainage remedies mixed in a little water, or some herbal tinctures mixed in a little water. Can you get your daughter to do that? Or drink down a little shot glass w/ this stuff in it, with a regular drink chaser? And about the probiotics, let me be blunt: I don't know how you can give her antibiotics without giving her quality probiotics (at least 2 hours away from antibiotics) I know your daughter has had c. diff. gut infection in the past- you are playing Russian roulette not taking care of her gut- Nasty bacterial gut infections that will flourish by not replacing good bacteria (probiotics) that the antibiotics are wiping out, these gut infections, will cause some of the worst behavior ever seen, Lyme and Bartonella nonwithstanding. So, my feedback, from being here with you on the board- your daughter needs detox. You need to work on and fix her gut, too. I think doing these things, helping her clear out, will help the behaviors. Sorry if I am being too blunt. Just trying to help, I care.
  15. I don't think it is enough, and part of the flip out is trying to detox all the die off from the antibiotics/infections. I know, because I see it with my daughter, too. Sometimes, more important than trying to find the magic antibiotic combo, is the detox/capability of what she is on. Can you get homeopathic remedies in her? The 'Pekana Big 3' drainage remedies. The herbal tinctures Burbur and Parsley from Nutrimedix. Liver support is critical: Milk thistle, Xymogen MedCaps DPO, Liverlife tincture, etc. Magnesium supplements can be calming. It sounds like she needs tremendous support. I know there have been gut issues in the past with her, too- Are you getting probiotics in? Making sure the bowels move enough to get the crud out.
  16. A sore throat can be a symptom of Bartonella, maybe it is die off. What are you doing for detox for daughter?
  17. Hi- This was an old post I started back in November of 2011, which I deleted right after I posted because it was quite whiney :-) Seriously tho, lots of you are my mentors. Keep on trucking.
  18. Nope, not crazy. Parasites! Yes, disgusting and embarrassing, but very real, no matter how clean you are. Not sure you want to hear more :-/
  19. I have never heard of Doxy causing weight gain.
  20. Hi- just trying to help, here is my .02 cents. I have insomnia - I don't think any antibiotic is going to help me with it while I am taking it. The means to the ends- getting rid of Lyme/Bart, is the underlying cause (Bartonella especially, I believe.) Doryx and Bactrim sound like a good oral combo for Lyme. Is she taking any sleep aids? My daughter only needs a little melatonin, I, however, need stronger- Ambien right now, in the past Trazadone. I hear Klonopin helps many. Sometimes I need a 1/2 Valium when I constant wake in the middle of the night. Is her treating Dr. helping?
  21. I also had to get very hardcore- It HAS to happen mentality, it is medicine. Such and such are not going to happen until we take the 'vitamins' Call me wicked, I've also said if we don't take the pills, then we go to shots. Reward system- I let her take them with low sugar juice box, she doesn't get to drink them otherwise.
  22. I hate to say this, but fevers and rashes popping up while on antibiotics sounds like Lyme or a co-infection. Not sure if he's been tested? Do you think you are just dealing with strep?
  23. My, my, my now isn't this handy? Just ordered a KPU test for myself! Thanks!
  24. Yes, swallowing capsules, which was life changing, right up there with potty training. Teach your child, you will be surprised- offer a large reward, start small size. I also can get her to take horrid tasting tinctures in an oral syringe. Getting a nasal spray to happen almost did me in.
  25. I looked it up, I didn't know what it was, and saw this- http://nccam.nih.gov/health/feverfew Can be a few side effects (like everything tho, right) but I would love to find a healthy alternative for dd7 from the dye free children's Advil that I confess I rely upon too much- not for fevers, but I tend to use it in hopes of a mood regulator- because I think it works slightly, and sometimes I really need that slightly, up to 2x a day. Not great for the stomach in the long run. I've already done my curcumin/Tumeric bouts with her in an attempt to decrease inflammation- Let us know if feverfew works well!
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