Guest guest Posted July 17, 2010 Report Share Posted July 17, 2010 Hi , it was interesting reading abut your son's progress. My son and I are also " HHV-6ers " so I found that connection interesting. I'd love to know more about what the UCLA docs warned about..? I don't know if this is related, but I have had significant swelling in my lymph nodes (in my neck, on my left side, and under my left breast) that has been worsening for about 6 months. There have bee a few small lumps like you describe- like hard peas under the skin. These for me are swollen lymph nodes. This symptom (along with pain in my spleen and swelling there, along with some other symptoms) ended up in me getting screened for lymphoma. I was worried as lymphoma seems to be a complication of HHV-6. It wasn't lymphpoma, but tests have not revealed anything useful. Then, I asked what I thought was an unrelated quesiton on the Trying_Low_Oxalates list about vitamin C, and the response form Owens floored me. There is research that shows that oxalates (I think especially when the convert from vitamin C, but not sure) build up in the lymph system, the spleen, and the adrenals. I think there is a connection between the HHV-6 and ozxalates. Have you been giving vitamin C? Have you looked into oxalates? This seems a bit far-fetched, but could be relevant. -Sierra > > My son age 11 had an appointment today because he has a small mass/lump under his left nipple. > > The pediatrician said it could be hormone related, but since the hormones involved come from the adrenal glands and we do so much to support the adrenal glands, I'm wondering if anyone else has experienced anything similar with their child? > > If there are no changes we go back in a month for tests, but our Doctor feels that as the hormones surge and then adjust (isn't puberty great) that the mass could shrink back into the tissue on its' own. > > I'm scheduling an appointment with Dr. Megson, our specialist, but I was curious to learn of any similar situations or history in our group. > > So much of what we do still isn't really mainstream and so our hurdles and experiences fly under the radar. Any parent would worry, but when it's us, and we already have immune compromised, somewhat health fragile children, all those horrible warnings and statistics from the Doctors at UCLA start echoing in my head. > > I sit here and worry now that I was a bit cocky in my assumption that since so many statistics and problems have been beaten by us, that my son would beat all the statistics. > > The improvements, the normalcy, the various groups that try to remove labels from my son, the increase in IgA (an impossibility the Doctors said) fostered such confidence in what we were doing. > > A lump rears its' nasty little 1 cm by 1 cm self and I wonder, what goes on in my child's body that we didn't know about? What didn't the bloodwork show? > > After all, a decade ago no one really thought about Herpes 6, and yet treating for that virus is really what I think allowed our son's immune system to start to come back online. The blood tests show no improvement in IgA until we began the antivirals combined with the Virastop, No Fenol, Digest Gold and various vitamins. Then when you compare labs you see a direct correlation between Herpes 6 levels going down and IgA going up. > > Is this lump just a swelling of tissue, that will go down? > > Is this one of the auto immune pre-indicators that the UCLA Docs warned about? > > Or is it a Herpes 6 like situation where we are part of a small group that has a situation that needs to be treated and it's going to take our specialist back East who has seen children with a similar situation and can treat it. > > > If anyone out there can say they've had anything similar and what we could be looking at, I'd really appreciate a response. > > Thank you > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2010 Report Share Posted July 20, 2010 Oxalates are an issue. In fact he has gotten pain in his back, but I never thought about them being in his chest like a mass. Thank you for the response. I'll look into it and post what I find. The head of immunology and the head of gastroenterology at UCLA back in 2001-2002, were very specific in their assessment that the immune, stomach and autism were unrelated issues. It mattered to them not at all the correlation I saw between dietary, health and behavioral problems. The statistics for children who had the same health (immune, stomach) diagnosis as my son, had a 80-90% chance of the following (diabetes, asthma, cancer of lymph nodes) and a whole range of auto immune diseases of which the Lupus scared me the most, as it often struck in their twenties and they often died in their thirties. The whole bottled water, year round antibiotics, etc. seemed a pitiful attempt to stop what seemed horrific. As we've done the things we've done over the years, my son has never become diabetic, asthmatic and his IgA has increased (as I wrote before, the Docs said this was impossible). I got scared Friday when I wondered if cancer had crept in while I had been watching and fighting all these other health issues. Re: lump in chest Hi , it was interesting reading abut your son's progress. My son and I are also " HHV-6ers " so I found that connection interesting. I'd love to know more about what the UCLA docs warned about..? I don't know if this is related, but I have had significant swelling in my lymph nodes (in my neck, on my left side, and under my left breast) that has been worsening for about 6 months. There have bee a few small lumps like you describe- like hard peas under the skin. These for me are swollen lymph nodes. This symptom (along with pain in my spleen and swelling there, along with some other symptoms) ended up in me getting screened for lymphoma. I was worried as lymphoma seems to be a complication of HHV-6. It wasn't lymphpoma, but tests have not revealed anything useful. Then, I asked what I thought was an unrelated quesiton on the Trying_Low_Oxalates list about vitamin C, and the response form Owens floored me. There is research that shows that oxalates (I think especially when the convert from vitamin C, but not sure) build up in the lymph system, the spleen, and the adrenals. I think there is a connection between the HHV-6 and ozxalates. Have you been giving vitamin C? Have you looked into oxalates? This seems a bit far-fetched, but could be relevant. -Sierra > > My son age 11 had an appointment today because he has a small mass/lump under his left nipple. > > The pediatrician said it could be hormone related, but since the hormones involved come from the adrenal glands and we do so much to support the adrenal glands, I'm wondering if anyone else has experienced anything similar with their child? > > If there are no changes we go back in a month for tests, but our Doctor feels that as the hormones surge and then adjust (isn't puberty great) that the mass could shrink back into the tissue on its' own. > > I'm scheduling an appointment with Dr. Megson, our specialist, but I was curious to learn of any similar situations or history in our group. > > So much of what we do still isn't really mainstream and so our hurdles and experiences fly under the radar. Any parent would worry, but when it's us, and we already have immune compromised, somewhat health fragile children, all those horrible warnings and statistics from the Doctors at UCLA start echoing in my head. > > I sit here and worry now that I was a bit cocky in my assumption that since so many statistics and problems have been beaten by us, that my son would beat all the statistics. > > The improvements, the normalcy, the various groups that try to remove labels from my son, the increase in IgA (an impossibility the Doctors said) fostered such confidence in what we were doing. > > A lump rears its' nasty little 1 cm by 1 cm self and I wonder, what goes on in my child's body that we didn't know about? What didn't the bloodwork show? > > After all, a decade ago no one really thought about Herpes 6, and yet treating for that virus is really what I think allowed our son's immune system to start to come back online. The blood tests show no improvement in IgA until we began the antivirals combined with the Virastop, No Fenol, Digest Gold and various vitamins. Then when you compare labs you see a direct correlation between Herpes 6 levels going down and IgA going up. > > Is this lump just a swelling of tissue, that will go down? > > Is this one of the auto immune pre-indicators that the UCLA Docs warned about? > > Or is it a Herpes 6 like situation where we are part of a small group that has a situation that needs to be treated and it's going to take our specialist back East who has seen children with a similar situation and can treat it. > > > If anyone out there can say they've had anything similar and what we could be looking at, I'd really appreciate a response. > > Thank you > > > > Quote Link to comment Share on other sites More sharing options...
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