Guest guest Posted December 11, 2008 Report Share Posted December 11, 2008 Thank you, Gayatri, It's putting it into perspective as you are here and I've been trying to do that is a hard reality more so for me than her because she is not as sick as most children on this list, but something is wrong. Other parents are truly most likely thinking I am making a big deal and then we really dont fit in here as well. She is not chronic; she does not have autism; she was caught before chronic and thats a good place to be, but its a very strange place to be becasue there is no specific support for that. I try to frame what we do in a sense of staying healthy: garshana massage, sauna, detox supps and I try not to use supps we dont need to give her the idea that she is sicker than she is. She is not sick. She has early stage lyme that gave her symptoms that could be explained away without blood tests and that most moms will roll their eyeballs at me about. How to say you are sick but not that sick but if we dont do something you could be but maybe not and btw, the last doc (LLMD ) said if she did treat you it could make you worse. What the hell does that mean? No explanatio n because she was a patronizing _____. Thank you for responding and your answer is very much right on. Robin > > > > I know you all are used to this, but this is bringing a new reality > > home to us. Our daughter age 11 is herxing on doxy. She has the super > > high cd 57 over 750 and elevated ANA, lymphs swollen, brain fog.. I > > remember now last summer she cried for days for no reason. Joints > > sometimes going out.. now she has been on abx rotating dosy and > > ceftin and herxing needing help twice up or down the stairs. So hard > > to see this, but I'm trying to tell myself I am not making it up (you > > know how this can be so subjected to denial esp when your child is > > not *that* sick. We are addresssing what I think is early stage lyme > > (positive IgM and IgG bands or course) but it is so easy to crawl > > back into the hidey-hole of " this cant be. " I havent cracked open the > > valkion yet. Not sure to use it yet and waiting for muscle testing. > > But we have tried the lightworks and she " herxed " on that, we assume. > > Same symptoms as tonight: wobbly legs (from knees) and light > > headedness plus the twitching little fingers. I know you all are > > dealing with so much more... I'm sorry to be " complaining " or > > whateevr I am doing...any words of wisdom would be appreciated. I > > cant believe this is happening. She seems to herx more on doxy. She > > didnt have these symptoms to this degree before.. or some of these > > symptoms which usually most likely means a herx, but I am creeping > > into my hole of denial?... My husband is concerned I focus too much > > as he would prefer to ignore it so it wil go away ? and I try not to > > influence her, but knowing something is a probably herx is better > > than not knowing what is going on. Unless I tell her, " oh, its just > > dysautomonia-like stuff because you need to drink more water, or its > > just how we humanfolk feel sometimes.. " Telling her she is herxing > > is hard to do because it validates the infection for us and for her. > > I dont want her to think she is sick. She is well, but she has > > exposre to lyme that is seemnigly responding to abx. So we know, > > right? I want to go back to a few years ago when this Lyme didnt > > exist for us. Then I know on some level she is lucky to have help > > sooner than later, then I worry I am creating more problems with the > > abx.. like the LLMD who did not want to treat her yet told me would > > happen. What more problems? cystic form? They go in and out anyway? > > One drop of samento for a few days and she had rashes and scabbed > > over sores on her back, thus I pursued the lyme test. Its difficult > > to know what to do when the child is not chronic. Guilt or fear no > > matter what decision. So I help her upstairs tomight and put her to > > bed. Normally independent child.. did I cause this by treating > > instead of waiting to see if it would resolve on its own? Maybe it > > would hav eif I had not interferred. My son I have not blood tested > > because he does not yet present with those little nagging signs... > > but he is close to it. ART tested negative. When do I blood test him? > > Do I just let him go and treat her.. so many ways to feel overwhelmed > > and guilty. > > > > Thank you, > > > > Robin > > > Quote Link to comment Share on other sites More sharing options...
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