Guest guest Posted December 21, 2011 Report Share Posted December 21, 2011 Hi there again , that was a long coffee break I took! Apologies, got called away from the pc. I'm interested in all the replies in this thread so am addressing them all LOL! I hope people come back to me. It seems like light years ago we did Chelation. Apologies if I'm telling you anything you already know. I'm not a medical practitioner, but then again we haven't got many anyway! So we all end up becoming our own kids' experts. Please don't do anything I talk about without checking with who is helping you out (if there is someone) because all the children although there are common characteristics, present differently at different times for different reasons. LDM Answering your first question , I give LDM-100 at 7 am, then Jay leaves for school at 9am. He starts late. Just before I then give him abx. After school, 4pm, more LDM, then probiotics just before bedtime (very late!) I am hoping probiotics aren't working against LDM, need to research that. I am not using LDM-100 to pull viruses, but to see if it has an impact against strep and eventually if it is protective against it. Clostridia About Clostridia. In the very early days we did Vancomycin. It got rid of it big time. Strep and Clostridia show very similar symptoms, hyperactivity, vocal tics/scripting, rages. At the time there was one piece of research about vanco, which said that the children did not hold their progress once it was finished. We did not find that, J held his progress, think that was because in the research the kids were not supported by probiotics and naturals the way our kids are. Vanco is now one treatment for strep. Along with Flagyl, which also works well for strep. I think I had to get to know my kid really well and understand what we were treating. I think we were treating clostridia at this point because we had a rocket-high test marker for it. Scarlet Fever Scarlet Fever is implicated in PANDAS kids along with Rheumatic Fever and Sydenhams chorea (Chorea being involuntary movements but specific kind of tics.) It is the same strep strain (Streptoccous Pyogenes.) I am not so naive as to suggest that every single kid with OCD and/or tics is a PANDAS kid, but at the same time I would not wish our experience on anyone, so whenever I speak to people I try and let them know what that is and what they can do about it in case they have the same symptoms we have. I am sharing video with people privately and I now have video of early recovery as well, so anyone can see what damage this damned thing can do if they want to get in touch. In your case, as the kids have had Scarlet Fever, they may be vulnerable to strep, as you've figured out, and you need to treat for it and keep a strong eye on it. OCD/Tics/Viral Protocol For my Son, the OCD/tics were there at an early age. We were told it was autism. We bought it. And, it was very subtle indeed, and hard to spot initially whether it was behavioural. What would I do now? Well I would (and am) be looking at naturals to see what protected against strep and dealt with tics. Because tics indicate in some cases, neurological dysfunction and I want to limit that. Sorry to state the obvious. And if I were doing a viral protocol it would be a top priority for me. Treatment for bacteria. Its not just strep A (Strep Pyogenes) but there is B, C, there's Staph, there's a whole host. Over the last seven years, like a lot of people on here, we have done a extensive range of biomedical therapies. There are few things we have not done, immunovir, valtrex, b12, the works really, apart from HBOT which I am not currently doing because I have found it can cause strep to proliferate and after testing found it is our main problem. Observation certainly shows that as well. Still doing Scotson. Early Recovery, and Why As I mentioned in my earlier post, we had strong early recovery to the extent that our then DAN doctor said he was looking at a fully recovering child, and he'd never seen one. I have evidence of that, and it is quite staggering to look at it now, sadly, although we are getting back to where we were to some extent. There is hope. was dx'd with Severe Autism and at 2 years old all he did (and I mean all) was run up and down my front room all day until he was exhausted and also he was completely utterly stuck in his own world. The big thing in that early recovery - Enzymes, which truly sorted out the gut (and Yeast if you follow Di Felice's reasoning) and probiotics, and treatment for yeast. Classic stuff really. Then B12 injections. Viruses and Methylation - need to protect against bacteria? Remember J did not have the MMR, but was hit by a virus because he had a malfunctioning immune system (genetic, we finally found.) And, we also know that methylation is disrupted in a lot of our children for genetic reasons, and by MMR/Viruses. So I think B12 mopped and methylated a lot of the problems from that early viral infection, and shipped it out, but left the way clear for secondary bacterial infection. The pandas (strep) was there from an early age after that. THEN we did artisunate after a viral panel where Jay was positive for just about every thing known to man, and valtrex when artisunate did not cut it for us. And after those viral treatments, each time we got a pandas flare and each time it got worse because we weren't treating for OCD/tics. We weren't going after the strep because we didn't understand what it was (not many people did then!) Using immune boosters would not have been the answer now I know how strep works. They can actually make the strep fight back harder. Immunovir (constant, and then a trial of pulsed) ceased to be effective. The B12 injections weren't cutting it enough either then either. Strep antibodies had got out of hand working on the brain so no amount of methylation would work. Therefore what I am saying is, people doing viral protocols, might want to protect against strep, we need to find things that work for that. That's what I'm looking at now, but remember, that's just us, and every child is different. Anyone who has any feedback on that please, share it. Tell us what works for you for tics, bacteria, so we can try it. Differing approaches to treating OCD Natasa and others speak about treatment for OCD such as 5-HTP and serotonin boosters/recyclers. Me, having been through this, I want to know how to heal the main part of the brain implicated in OCD, the basal ganglia, and protect against further damage which will make the OCD worse, as an additional therapy. Strep is one of the real baddies for OCD. Still think though if 5-HTP etc is working for you, then you do what works. Brain healing Its difficult when you get to our point to stabilise a child so you can begin brain healing. There's a lot of talk about probiotics and yeast flare up. We've escaped this because of CP1 supplementation and the fact that thanks to everyone on here at an extremely early age we dealt with the gut problems J had. Healing regressions/Viral Protocol/B12 has got a healing regression, but I think that might depend on the amount of viral load. We have never had a healing regression, but possibly my son's viral load is lighter than is dealing with, because he did not have the MMR. As I said, I would have given J the MMR if I hadn't seen my niece go down after it. I also think is methylating to get the viruses out, they won't come out without sufficient methylation. Hence our early success and prolonged recovery on B12 injections. As for the discussion on the OCD getting more intense after chelation, this just makes me even more suspicious. I had this, done 134 rounds, and at the time I stepped up the B12 after each round in case of viral bacterial infection, to ship it out, and used GSE. But again, that's just me, and we had good success with that. So I am experimenting with naturals for OCD and Tics. Have just done anti-virals with good results. If this email has upset or distressed anyone, I am sorry. The intention behind it is to share my experience, like everyone else does, in the hopes it will help. I haven't been around as much as I would like to have been. If I have let anyone down, I apologise for that as well. It has just been a constant fight, at last sleep under control, but my fight is far from over. And having said that, I STILL see improvements whilst he is on biomed (I had to take him off last year for about four months because the Pandas flare was so bad, and we needed test evidence to fight the NHS) and if you had told me when we began this journey that I would be seeing even what I am seeing now, I would have been amazed. Time at college (a bad idea in retrospect) showed me paper after paper about how language does not develop after certain ages, well my Son is nine and still never ceases to astound me. I will never give up, not ever. I can't, remember what I saw, he got better. He came back to me as a loving, socially relating, playful boy. I love more than anyone in the world, and he has changed my life for the better. Of course there are times when I feel I have let him down, but I could only do what I knew then. If you want me, that goes for any parent, get in touch. Eileen xxx > > > > Yes LDM is one of the top on my list at the moment. I am currently dosing to maximum he can tolerate , whilst Jay is on low level prophylaxis abx now out of flare. During the Christmas Hols we are going to be pretty quiet here, not mixing with great crowds of kids (I can't do that to J now he's recovering from really bad flare recently, wouldn't be right) and at mo am on 30 drops twice a day. I plan to go as far as I can, and take the abx down to see how he copes. Did LDM 100 work for your strep outbreak then ? How's your lad now? > > > > Thanks > > Eileen x > Quote Link to comment Share on other sites More sharing options...
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