Guest guest Posted September 17, 1999 Report Share Posted September 17, 1999 Lovette, it was HONORs classes. He's not stupid. He's just a teenager. Don't be so hard on him and on yourself! I've raised 4 sons. You haven't been through the worst of it yet, trust me!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 1999 Report Share Posted September 17, 1999 In a message dated 9/18/99 2:28:33 AM, smott@... writes: <<Turns out he decided at least a month ago that he was well and didn't have lyme anymore so he stopped taking his Biaxin. Of course, I've asked him every single day if he took his medicine - he just simply lied to me. >> Hi Lovette The teen years are tough as it is, and Lyme makes it harder. Maybe now he'll see how important the meds are. You can't do it all for him. There are times that he's going to fall, and he'll have to get up and hopefully learn from the experience. You might want to have him meet with the doctor, without you there. Kids that age often listen to others more than they do their parents. I don't know any parent of a teen that thinks they can parent! Hang in there! Jane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 1999 Report Share Posted September 17, 1999 Aw, c'mon. If you want teenage boy stories, tell me. I've got enough for everyone. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 1999 Report Share Posted September 17, 1999 Well, I'm terribly depressed again. We got a call from his teacher today saying he's failing Honors Algebra and English. Turns out he decided at least a month ago that he was well and didn't have lyme anymore so he stopped taking his Biaxin. Of course, I've asked him every single day if he took his medicine - he just simply lied to me. He's 14 and I just don't think I can parent anymore. Being on a daily IV drip is bad enough, but having a STUPID teenager on top of it is just too much! Lovette Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 1999 Report Share Posted September 17, 1999 lisa86@... wrote: > > From: lisa86@... > > Lovette, it was HONORs classes. He's not stupid. He's just a teenager. Don't > be so hard on him and on yourself! I've raised 4 sons. You haven't been > through the worst of it yet, trust me!!! > Great lisa - now I'm REALLY depressed! Lovette Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2000 Report Share Posted December 1, 2000 While is is hard to find, you need to dig around and find her a peer group of others who she is interested in-those who look normal but have significant learning disabilities. I know exactly what you mean-my 21 year old son prefers people who look more typical (although he is very open to others with DS and loves attending the NDSC convention where he meets individuals with varying skills including those more skilled than him which helps him when he develops a " pecking order " ) Jon is lucky, he has found a wonderful peer group which has included many oppportunities for dating. However, after several expereincs with what he has found to be overbearing woman, he has decided to take a break from dating for awhile. I wouls also suggest you find some individuals with DS who functionmuch higher than your daughter as a way of educating her about differences even among those with the samw disability. It may help to humble her. Jo Ann Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2000 Report Share Posted December 2, 2000 It's not minor to me, Pat. This is a real issue for us parents with adult children. I will retell the story of my (27, DS) and (32, CP/MR) for the benefit of those relatively new to the list, in the hope that it will help. Those of you who have heard it already can just delete. If we are facing reality, then we must face the fact that our children are sexual beings. They will have a sex life and there's nothing we can do about it. What sort of sex life may be up to us, however. My daughter went to work in sheltered workshop about eight or nine years ago. There she met and it was love at first sight. They began dating, with me doing the driving. This meant that and I began including in everything we did. Throughout the first year of this, I learned, little by little, that the foster home in which lived was an abusive one. You name the abuse, and was enduring it ... financial, physical, psychological, mental and sexual. His mother had died some years previous and his father had deserted him when he was a child, so his options were limited. Toward the middle of the second year of knowing , he showed up on our doorstep, suitcase in hand and we took him in. I called adult protective services, we had a conference, and it was learned that no one had bothered to go to court and make themselves guardian of . He was a free agent and could live where he wished. and I wanted him to live with us. They cannot marry because they will lose their benefits. , who receives Social Security survivors benefits (her father died when she was 2 1/2-months old) would lose hers simply by getting married. Because she receives money from a trust and inheritance established by her paternal grandmother, she is not eligible for SSI. would lose his SSI because his wife has money. Yet the money is not enough for one person to live on, much less two. So, they're living in sin. I refer to as my foster son. Over the past seven years, he has become like a son to me. He and understand that they are never to tell anyone that they are married because of Texas' very liberal common law statutes and Social Security's penchant for cutting people off at the drop of a hat. Both and have a sex life. I hear them laughing a lot. granny --- God loves everyone, but probably prefers " fruits of the spirit " over " religious nuts " . http://home.earthlink.net/~bspyle Teenager > Hi, > My name is Pat and I have a 28 year old daughter who will always be 16. > I am sure that someone out there knows exactly what I am talking about. She > wants a man in her life, but wants what she calls a " normal person. " > Specifically a college guy that is a hunk. We have had a lot of heart to > heart talks about Down Syndrome and what that means. Does anyone have any > suggestions re: this problem? > It breaks my heart! Sometimes she cries and cries about things like > this, I have talked to counselers but they seem to get no where. When she > was in school she went to four proms with a boy that was LD but since then > he has gotten married. > I consider myself VERY lucky to have such a beautiful child. She > extremely healthy and my heart goes out to those who are not. To some this > might seem minor and I know I can't fix everything but I should would > appreciate help from someone who has been able to deal with this. > Thanks.... > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2010 Report Share Posted November 3, 2010 I have ReA (RA) my teen daughter has chronic tenoditis that the Drs dont seem to be able to help with. I am afraid she may have RA or somethinglike I have (myco plasma) anyway, at this point my daughter is willing to have testunbg done. Our local DRs dont know anything about jmycoplasma.. Im asking this group for which tests should i go in and TELL the Drs to run onh her? I do plan to test for thyroid, What else? Kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2010 Report Share Posted November 3, 2010 Kathy, I believe that you should try another doctor. Look at the file " started.txt " under the section " Files " of this group (left menu). At the end of the file you will find a list of doctors that are familiar with antibiotic therapy. The link below also gives you more details on what tests should be done. It has a list of labs that will do it, including the already mentioned, IgeneX. http://www.thepowerhour.com/news/mycoplasma_testing.htm -- Renato > > I have ReA (RA) my teen daughter has chronic tenoditis that the Drs dont seem to be able to help with. I am afraid she may have RA or somethinglike I have (myco plasma) anyway, at this point my daughter is willing to have testunbg done. Our local DRs dont know anything about jmycoplasma.. Im asking this group for which tests should i go in and TELL the Drs to run onh her? I do plan to test for thyroid, What else? Kathy > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2010 Report Share Posted November 3, 2010 Hi, Many years ago I had a frozen shoulder. I googled " frozen shoulder " and the article said to take glucosamine. Further down in the article it mentioned that bursitis and tendonitis could be caused or aggravated by low Vitamin B12. Vit B12 shots were recommended weekly for 4 weeks and then sublingual after that. I do not recall for how long. Since I read the article my computer crashed and I lost all of my saved favorites and have not been able to find the same article since. Just thought I would throw out this information in case it might be of some help to someone. carol_DM remission/control DM and MCTD with CREST 10 years now Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2010 Report Share Posted November 4, 2010 thank you, that could help as she refuses to take any vitamins and I plan to get blood work done, which im sure will show she is anemic as well. kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2010 Report Share Posted November 4, 2010 Kathy, I have the same trouble with my son. He was diagnosed with scleroderma, jra and chronic lyme disease in 2008 at the age of 13. He was really good about taking supplements then, now, it is wearing thin. I have a question for the group though, he started AP in May of 2008 and his skin is much softer now and there is hair growing on his chest where one of his patches was. However, I found 2 new patches behind his knee and now I am so scared that AP is really not working. I thought that it would take time to recover but I did not think I would find any new ones - anyone have this happen? Sue From: rheumatic [mailto:rheumatic ] On Behalf Of Kathy Dillon Sent: Thursday, November 04, 2010 9:39 AM rheumatic Subject: rheumatic Re:teenager thank you, that could help as she refuses to take any vitamins and I plan to get blood work done, which im sure will show she is anemic as well. kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2010 Report Share Posted November 4, 2010 Sue, I have dermatomyositis caused by chronic lyme. I now have nearly normal labs after being on AP since 2007. (My personal high was 16,800 and normal is 200 for one of my blood tests.) I have found that minocycline and even the addition of Zithromax were not enough; Fluconazole was extremely important to my recovery, and so was metronidazole. Fluconazole has now been shown to disrupt the life cycle of the Lyme pathogen, and so has metronidazole. I continued to have new symptoms despite all the progress I had made on the AP, until I took those drugs. I still do courses of them; they are invaluable in keeping me well. Best, On Thu, Nov 4, 2010 at 9:59 AM, Mazik <smazik@...>wrote: > > > Kathy, > > I have the same trouble with my son. He was diagnosed with scleroderma, jra > and chronic lyme disease in 2008 at the age of 13. He was really good about > taking supplements then, now, it is wearing thin. I have a question for the > group though, he started AP in May of 2008 and his skin is much softer now > and there is hair growing on his chest where one of his patches was. > However, I found 2 new patches behind his knee and now I am so scared that > AP is really not working. I thought that it would take time to recover but > I > did not think I would find any new ones - anyone have this happen? > > Sue > > > From: rheumatic <rheumatic%40> [mailto: > rheumatic <rheumatic%40>] On Behalf > Of Kathy Dillon > Sent: Thursday, November 04, 2010 9:39 AM > rheumatic <rheumatic%40> > Subject: rheumatic Re:teenager > > > thank you, that could help as she refuses to take any vitamins and I plan > to > get blood work done, which im sure will show she is anemic as well. kathy > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2010 Report Share Posted November 4, 2010 has been on metronidazole for about 3 months now -- he see Dr. C in Missouri and we go back again in 2 weeks. His next protocol to try will be clindy, plaquenil and biaxin. He also had a week of clindy IV's with Dr. S in Iowa in June. It just seems like he is not making as great a progress as he should be considering his age. I read so much and so many people see great results within 6 months -- I am just getting scared and frustrated. Thank you so much for replying to me! rheumatic Re:teenager > > > thank you, that could help as she refuses to take any vitamins and I plan > to > get blood work done, which im sure will show she is anemic as well. kathy > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2010 Report Share Posted November 4, 2010 Sorry to hear is not doing as well as he should with the IV's in the summer at Dr.S. I have been following his progress on the RBF. I have been on Biaxin since I started the AP. I added minoxin later on and finally doing better. I used some Cipro for 6 weeks and done some Clindy (pills) for dental work. Even my hands are doing better. Dr. K put me on Pepsid AD and it seems to help with my hands, seems to be some internal problem. Hope you find some help for . Eva > > > Kathy, > > I have the same trouble with my son. He was diagnosed with scleroderma, jra > and chronic lyme disease in 2008 at the age of 13. He was really good about > taking supplements then, now, it is wearing thin. I have a question for the > group though, he started AP in May of 2008 and his skin is much softer now > and there is hair growing on his chest where one of his patches was. > However, I found 2 new patches behind his knee and now I am so scared that > AP is really not working. I thought that it would take time to recover but > I > did not think I would find any new ones - anyone have this happen? > > Sue > > > From: rheumatic <rheumatic%40> [mailto: > rheumatic <rheumatic%40>] On Behalf > Of Kathy Dillon > Sent: Thursday, November 04, 2010 9:39 AM > rheumatic <rheumatic%40> > Subject: rheumatic Re:teenager > > > thank you, that could help as she refuses to take any vitamins and I plan > to > get blood work done, which im sure will show she is anemic as well. kathy > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2010 Report Share Posted November 5, 2010 Thanks Eva – are you able to still post on RBF? I was not sure as I have posted a couple and did not hear back -- Sue From: rheumatic [mailto:rheumatic ] On Behalf Of Eva Holloway Sent: Thursday, November 04, 2010 11:06 PM rheumatic Subject: RE: rheumatic Re:teenager Sorry to hear is not doing as well as he should with the IV's in the summer at Dr.S. I have been following his progress on the RBF. I have been on Biaxin since I started the AP. I added minoxin later on and finally doing better. I used some Cipro for 6 weeks and done some Clindy (pills) for dental work. Even my hands are doing better. Dr. K put me on Pepsid AD and it seems to help with my hands, seems to be some internal problem. Hope you find some help for . Eva > > > Kathy, > > I have the same trouble with my son. He was diagnosed with scleroderma, jra > and chronic lyme disease in 2008 at the age of 13. He was really good about > taking supplements then, now, it is wearing thin. I have a question for the > group though, he started AP in May of 2008 and his skin is much softer now > and there is hair growing on his chest where one of his patches was. > However, I found 2 new patches behind his knee and now I am so scared that > AP is really not working. I thought that it would take time to recover but > I > did not think I would find any new ones - anyone have this happen? > > Sue > > > From: rheumatic <mailto:rheumatic%40> <rheumatic%40> [mailto: > rheumatic <mailto:rheumatic%40> <rheumatic%40>] On Behalf > Of Kathy Dillon > Sent: Thursday, November 04, 2010 9:39 AM > rheumatic <mailto:rheumatic%40> <rheumatic%40> > Subject: rheumatic Re:teenager > > > thank you, that could help as she refuses to take any vitamins and I plan > to > get blood work done, which im sure will show she is anemic as well. kathy > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2010 Report Share Posted November 5, 2010 Sue Yes, lots of people can not get on RBF, they working on a new system, Lynnie from Australia is about the only volunteer still able to get on. I write to Maz on the regular e-mail if I have a question, There are not that many people able to get on.Let me know if you want Maz e-mai address and I send it to you on you personal e-mail. I am doing lots better, my hip has healed well and I am almost upright now but still leaning to the right side because of the scoliosis of the lower back. No help for that. Eva > > > Kathy, > > I have the same trouble with my son. He was diagnosed with scleroderma, jra > and chronic lyme disease in 2008 at the age of 13. He was really good about > taking supplements then, now, it is wearing thin. I have a question for the > group though, he started AP in May of 2008 and his skin is much softer now > and there is hair growing on his chest where one of his patches was. > However, I found 2 new patches behind his knee and now I am so scared that > AP is really not working. I thought that it would take time to recover but > I > did not think I would find any new ones - anyone have this happen? > > Sue > > > From: rheumatic <mailto:rheumatic%40> <rheumatic%40> [mailto: > rheumatic <mailto:rheumatic%40> <rheumatic%40>] On Behalf > Of Kathy Dillon > Sent: Thursday, November 04, 2010 9:39 AM > rheumatic <mailto:rheumatic%40> <rheumatic%40> > Subject: rheumatic Re:teenager > > > thank you, that could help as she refuses to take any vitamins and I plan > to > get blood work done, which im sure will show she is anemic as well. kathy > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2010 Report Share Posted November 5, 2010 I remember when you posted about your hip and I am so happy that it has healed well. I really would like to know if other people with scleroderma/mctd experience new patches after they had been on AP for over a year. Thank goodness we finally have ryan’s pediatrician back and he is going to follow what Dr. S. wants and order clindy IV’s every 2 weeks because I do believe the IV’s for 5 days helped ’s hands – do you think the IV’s could have brought out the new patches as some sort of herx? From: rheumatic [mailto:rheumatic ] On Behalf Of Eva Holloway Sent: Friday, November 05, 2010 8:46 AM rheumatic Subject: RE: rheumatic Re:teenager Sue Yes, lots of people can not get on RBF, they working on a new system, Lynnie from Australia is about the only volunteer still able to get on. I write to Maz on the regular e-mail if I have a question, There are not that many people able to get on.Let me know if you want Maz e-mai address and I send it to you on you personal e-mail. I am doing lots better, my hip has healed well and I am almost upright now but still leaning to the right side because of the scoliosis of the lower back. No help for that. Eva > > > Kathy, > > I have the same trouble with my son. He was diagnosed with scleroderma, jra > and chronic lyme disease in 2008 at the age of 13. He was really good about > taking supplements then, now, it is wearing thin. I have a question for the > group though, he started AP in May of 2008 and his skin is much softer now > and there is hair growing on his chest where one of his patches was. > However, I found 2 new patches behind his knee and now I am so scared that > AP is really not working. I thought that it would take time to recover but > I > did not think I would find any new ones - anyone have this happen? > > Sue > > > From: rheumatic <mailto:rheumatic%40> <mailto:rheumatic%40> <rheumatic%40> [mailto: > rheumatic <mailto:rheumatic%40> <mailto:rheumatic%40> <rheumatic%40>] On Behalf > Of Kathy Dillon > Sent: Thursday, November 04, 2010 9:39 AM > rheumatic <mailto:rheumatic%40> <mailto:rheumatic%40> <rheumatic%40> > Subject: rheumatic Re:teenager > > > thank you, that could help as she refuses to take any vitamins and I plan > to > get blood work done, which im sure will show she is anemic as well. kathy > > Quote Link to comment Share on other sites More sharing options...
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