Guest guest Posted November 25, 2007 Report Share Posted November 25, 2007 Now, that was something to be concerned about, but it will go down. Lynda At 02:54 PM 11/25/2007, you wrote: >My ANA was 1:160 & then a few months later 1:320. It is >speckled. The Double Strand DNA was 40. > >Lynn > > > When the tests come back positive > > > > > > > > Most of the time I work at having a positive attitude and being > > > > " strong " . I really try not to whine too much. It sounds mean somehow, > > > > but I am sometimes envious of those who have all the tests and they > > > > come back " negative " to a variety of diseases. I feel selfish too > > > > because I know that my health right now is better than some others. > > > > I have had many tests and symptoms that all indicate lupus. I have > > > > been diagnosed as having lupus. This is difficult for me because I > > > > begin to wonder if I will really be able to reverse all of this. Every > > > > new symptom or old symptoms flaring up get me down. > > > > Lately, I have been battling with depression because of this. I don't > > > > do well feeling powerless over a disease. > > > > I know others have been diagnosed with diseases and are taking meds > > > > for them. Do you deal with depression? > > > > Have there been others here with all the blood tests and lupus markers > > > > and symptoms that have recovered from this disease? > > > > As I've said before, maybe I can reduce the effects of the disease. > > > > It is depressing though to think that I might not be able to make this > > > > all go away. > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 25, 2007 Report Share Posted November 25, 2007 Lynn, Give it a year or two if you find it is still higher than you like, it took some of mine 5 years to get low again. Lynda At 02:51 PM 11/25/2007, you wrote: >I see him on the 20th. I will have repeat labs then. I hope and >pray, and pray, and pray, and pray that everything has gone down. I >don't care if it is normal, I just don't want it to go up. But if >it does, I will keep detoxing and try not to let the numbers bother >me or define who I am. Again, I am putting it in the Lord's hands. > >Sorry to hear you have such a hectic weekend. You'll need to rest >us so you don't get ill. > >Lynn > > > When the tests come back positive > > > > > > Most of the time I work at having a positive attitude and being > > > " strong " . I really try not to whine too much. It sounds mean somehow, > > > but I am sometimes envious of those who have all the tests and they > > > come back " negative " to a variety of diseases. I feel selfish too > > > because I know that my health right now is better than some others. > > > I have had many tests and symptoms that all indicate lupus. I have > > > been diagnosed as having lupus. This is difficult for me because I > > > begin to wonder if I will really be able to reverse all of this. Every > > > new symptom or old symptoms flaring up get me down. > > > Lately, I have been battling with depression because of this. I don't > > > do well feeling powerless over a disease. > > > I know others have been diagnosed with diseases and are taking meds > > > for them. Do you deal with depression? > > > Have there been others here with all the blood tests and lupus markers > > > and symptoms that have recovered from this disease? > > > As I've said before, maybe I can reduce the effects of the disease. > > > It is depressing though to think that I might not be able to make this > > > all go away. > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 25, 2007 Report Share Posted November 25, 2007 Thanks for the post Lynda. Good advice Lynn When the tests come back positive> > >> > > Most of the time I work at having a positive attitude and being> > > "strong". I really try not to whine too much. It sounds mean somehow,> > > but I am sometimes envious of those who have all the tests and they> > > come back "negative" to a variety of diseases. I feel selfish too> > > because I know that my health right now is better than some others.> > > I have had many tests and symptoms that all indicate lupus. I have> > > been diagnosed as having lupus. This is difficult for me because I> > > begin to wonder if I will really be able to reverse all of this. Every> > > new symptom or old symptoms flaring up get me down.> > > Lately, I have been battling with depression because of this. I don't> > > do well feeling powerless over a disease.> > > I know others have been diagnosed with diseases and are taking meds> > > for them. Do you deal with depression?> > > Have there been others here with all the blood tests and lupus markers> > > and symptoms that have recovered from this disease?> > > As I've said before, maybe I can reduce the effects of the disease.> > > It is depressing though to think that I might not be able to make this> > > all go away.> > >> > > > > >> >>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 25, 2007 Report Share Posted November 25, 2007 Lynda, Lynn had written that her anti-dna ab double strand was 40.... normal is 0-30. So it is somewhat high. She said her ANA was negative... which I don't know about... 1:40 and below are normal. (mine is 1:640). > > > > > > > > , > > > > > > > > I am on the same page with you!! I feel envious of those with the > > > auto-immune symptoms but negative tests. > > > > > > > > I have a positive ANA. I think mine was 1:180 in December and 1:320 > > > in March - either way it is positive! I fear mine won't be reversed > > > either. Especially with all my joint pains and skin issues. After > > > hearing about your skin biopsy, I feel my sores in my hairline would > > > test the same. They don't heal!! Also, my costochondritis has flared > > > back up lately and I see plueritic chest pain is another symptom of > > > Lupus. > > > > > > > > The Lupus diagnosis scares the crap out of me. I don't want to be > > > disabled!! I want kids. I know it can be controlled by early > > > detection and medication but then I hear how bad the medications are > > > and side effects. > > > > > > > > I have a follow-up with my rheumatologist in December. I pray that > > > my ANA is perfectly normal and not up even higher. If it is up, I may > > > ask about the medications. I want to at least know my options. > > > > > > > > Hang in there and know I am here. I understand how you feel > > > and I don't feel it is selfish. I feel the same way. Just think, we > > > could have something worse. At least the prognosis for Lupus is good > > > and they are doing research on it all the time. > > > > > > > > Hugs and prayers, > > > > > > > > Lynn > > > > > > > > > > > > > > > > When the tests come back positive > > > > > > > > Most of the time I work at having a positive attitude and being > > > > " strong " . I really try not to whine too much. It sounds mean somehow, > > > > but I am sometimes envious of those who have all the tests and they > > > > come back " negative " to a variety of diseases. I feel selfish too > > > > because I know that my health right now is better than some others. > > > > I have had many tests and symptoms that all indicate lupus. I have > > > > been diagnosed as having lupus. This is difficult for me because I > > > > begin to wonder if I will really be able to reverse all of this. Every > > > > new symptom or old symptoms flaring up get me down. > > > > Lately, I have been battling with depression because of this. I don't > > > > do well feeling powerless over a disease. > > > > I know others have been diagnosed with diseases and are taking meds > > > > for them. Do you deal with depression? > > > > Have there been others here with all the blood tests and lupus markers > > > > and symptoms that have recovered from this disease? > > > > As I've said before, maybe I can reduce the effects of the disease. > > > > It is depressing though to think that I might not be able to make this > > > > all go away. > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 25, 2007 Report Share Posted November 25, 2007 Lynn, Keep me posted about what he says. I go back to the rheumatologist tomorrow. I haven't seen him since Sept. I'm sure he will do all the tests again too. I also have a swollen parotid (salivary gland) that comes and goes. My mouth is very very dry....something new. I cooked a large dinner Thanksgiving. Friday I was so tired, I stayed in bed a large part of the day. Sat I was better but spent the day sorting and putting up Christmas decorations.... tired again today. I'm guessing this is something many of us deal with. I just have to learn to pace myself. Take care. > > > > > > , > > > > > > I am on the same page with you!! I feel envious of those with the > > auto-immune symptoms but negative tests. > > > > > > I have a positive ANA. I think mine was 1:180 in December and 1:320 > > in March - either way it is positive! I fear mine won't be reversed > > either. Especially with all my joint pains and skin issues. After > > hearing about your skin biopsy, I feel my sores in my hairline would > > test the same. They don't heal!! Also, my costochondritis has flared > > back up lately and I see plueritic chest pain is another symptom of > > Lupus. > > > > > > The Lupus diagnosis scares the crap out of me. I don't want to be > > disabled!! I want kids. I know it can be controlled by early > > detection and medication but then I hear how bad the medications are > > and side effects. > > > > > > I have a follow-up with my rheumatologist in December. I pray that > > my ANA is perfectly normal and not up even higher. If it is up, I may > > ask about the medications. I want to at least know my options. > > > > > > Hang in there and know I am here. I understand how you feel > > and I don't feel it is selfish. I feel the same way. Just think, we > > could have something worse. At least the prognosis for Lupus is good > > and they are doing research on it all the time. > > > > > > Hugs and prayers, > > > > > > Lynn > > > > > > > > > > > > When the tests come back positive > > > > > > Most of the time I work at having a positive attitude and being > > > " strong " . I really try not to whine too much. It sounds mean somehow, > > > but I am sometimes envious of those who have all the tests and they > > > come back " negative " to a variety of diseases. I feel selfish too > > > because I know that my health right now is better than some others. > > > I have had many tests and symptoms that all indicate lupus. I have > > > been diagnosed as having lupus. This is difficult for me because I > > > begin to wonder if I will really be able to reverse all of this. Every > > > new symptom or old symptoms flaring up get me down. > > > Lately, I have been battling with depression because of this. I don't > > > do well feeling powerless over a disease. > > > I know others have been diagnosed with diseases and are taking meds > > > for them. Do you deal with depression? > > > Have there been others here with all the blood tests and lupus markers > > > and symptoms that have recovered from this disease? > > > As I've said before, maybe I can reduce the effects of the disease. > > > It is depressing though to think that I might not be able to make this > > > all go away. > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 25, 2007 Report Share Posted November 25, 2007 , Yours is high. I hope you are heavily detoxing. Lynda At 08:59 PM 11/25/2007, you wrote: >Lynda, > >Lynn had written that her anti-dna ab double strand was 40.... normal >is 0-30. So it is somewhat high. She said her ANA was negative... >which I don't know about... 1:40 and below are normal. (mine is 1:640). > > > > > > > > > > > > > > , > > > > > > > > > > I am on the same page with you!! I feel envious of those with the > > > > auto-immune symptoms but negative tests. > > > > > > > > > > I have a positive ANA. I think mine was 1:180 in December and >1:320 > > > > in March - either way it is positive! I fear mine won't be reversed > > > > either. Especially with all my joint pains and skin issues. After > > > > hearing about your skin biopsy, I feel my sores in my hairline would > > > > test the same. They don't heal!! Also, my costochondritis has flared > > > > back up lately and I see plueritic chest pain is another symptom of > > > > Lupus. > > > > > > > > > > The Lupus diagnosis scares the crap out of me. I don't want to be > > > > disabled!! I want kids. I know it can be controlled by early > > > > detection and medication but then I hear how bad the medications are > > > > and side effects. > > > > > > > > > > I have a follow-up with my rheumatologist in December. I pray that > > > > my ANA is perfectly normal and not up even higher. If it is up, >I may > > > > ask about the medications. I want to at least know my options. > > > > > > > > > > Hang in there and know I am here. I understand how you feel > > > > and I don't feel it is selfish. I feel the same way. Just think, we > > > > could have something worse. At least the prognosis for Lupus is good > > > > and they are doing research on it all the time. > > > > > > > > > > Hugs and prayers, > > > > > > > > > > Lynn > > > > > > > > > > > > > > > > > > > > When the tests come back positive > > > > > > > > > > Most of the time I work at having a positive attitude and being > > > > > " strong " . I really try not to whine too much. It sounds mean >somehow, > > > > > but I am sometimes envious of those who have all the tests and >they > > > > > come back " negative " to a variety of diseases. I feel selfish too > > > > > because I know that my health right now is better than some >others. > > > > > I have had many tests and symptoms that all indicate lupus. I have > > > > > been diagnosed as having lupus. This is difficult for me because I > > > > > begin to wonder if I will really be able to reverse all of >this. Every > > > > > new symptom or old symptoms flaring up get me down. > > > > > Lately, I have been battling with depression because of this. >I don't > > > > > do well feeling powerless over a disease. > > > > > I know others have been diagnosed with diseases and are taking >meds > > > > > for them. Do you deal with depression? > > > > > Have there been others here with all the blood tests and lupus >markers > > > > > and symptoms that have recovered from this disease? > > > > > As I've said before, maybe I can reduce the effects of the >disease. > > > > > It is depressing though to think that I might not be able to >make this > > > > > all go away. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 25, 2007 Report Share Posted November 25, 2007 Lynda, I am doing what I can to detox. Supplements, footbaths/reflexology, massage, diet. I do hope it will go down some. My anti-dna double strand was 65 last time it was tested... that is too high too. > > > > > > > > > > & Ladies, > > > > > > > > > > I looked up my DBL-STR DNA AB when I got home and mine was at 40. > > > >So, high too. Darn it, I was hoping for normal. But it looks like my > > > >ANA was negative instead of positive. Unsure what this means? > > > > > > > > > > I also noticed Dr. Huang reported that during my explant she found > > > >that my implant doctor used a long-acting steriod!! Is this normal? > > > >I can only imagine what having a steriod in my body for 7+ years did > > > >to my system. > > > > > > > > > > Thanks, > > > > > > > > > > Lynn > > > > > > > > > > > > > > > > > > > > When the tests come back positive > > > > > > > > > > > > Most of the time I work at having a positive attitude and being > > > > > > " strong " . I really try not to whine too much. It sounds mean > >somehow, > > > > > > but I am sometimes envious of those who have all the tests and > >they > > > > > > come back " negative " to a variety of diseases. I feel selfish too > > > > > > because I know that my health right now is better than some > >others. > > > > > > I have had many tests and symptoms that all indicate lupus. I have > > > > > > been diagnosed as having lupus. This is difficult for me because I > > > > > > begin to wonder if I will really be able to reverse all of > >this. Every > > > > > > new symptom or old symptoms flaring up get me down. > > > > > > Lately, I have been battling with depression because of this. > >I don't > > > > > > do well feeling powerless over a disease. > > > > > > I know others have been diagnosed with diseases and are taking > >meds > > > > > > for them. Do you deal with depression? > > > > > > Have there been others here with all the blood tests and lupus > >markers > > > > > > and symptoms that have recovered from this disease? > > > > > > As I've said before, maybe I can reduce the effects of the > >disease. > > > > > > It is depressing though to think that I might not be able to > >make this > > > > > > all go away. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 25, 2007 Report Share Posted November 25, 2007 Yes, that is too high. But, it took 5 years for me to have a lot of tests turn out better. Lynda At 09:18 PM 11/25/2007, you wrote: >Lynda, > >I am doing what I can to detox. Supplements, footbaths/reflexology, >massage, diet. I do hope it will go down some. My anti-dna double >strand was 65 last time it was tested... that is too high too. > > > > > > > > > > > > > > > > & Ladies, > > > > > > > > > > > > I looked up my DBL-STR DNA AB when I got home and mine was >at 40. > > > > >So, high too. Darn it, I was hoping for normal. But it looks >like my > > > > >ANA was negative instead of positive. Unsure what this means? > > > > > > > > > > > > I also noticed Dr. Huang reported that during my explant she >found > > > > >that my implant doctor used a long-acting steriod!! Is this normal? > > > > >I can only imagine what having a steriod in my body for 7+ >years did > > > > >to my system. > > > > > > > > > > > > Thanks, > > > > > > > > > > > > Lynn > > > > > > > > > > > > > > > > > > > > > > > > When the tests come back positive > > > > > > > > > > > > > > Most of the time I work at having a positive attitude and >being > > > > > > > " strong " . I really try not to whine too much. It sounds mean > > >somehow, > > > > > > > but I am sometimes envious of those who have all the tests and > > >they > > > > > > > come back " negative " to a variety of diseases. I feel >selfish too > > > > > > > because I know that my health right now is better than some > > >others. > > > > > > > I have had many tests and symptoms that all indicate >lupus. I have > > > > > > > been diagnosed as having lupus. This is difficult for me >because I > > > > > > > begin to wonder if I will really be able to reverse all of > > >this. Every > > > > > > > new symptom or old symptoms flaring up get me down. > > > > > > > Lately, I have been battling with depression because of this. > > >I don't > > > > > > > do well feeling powerless over a disease. > > > > > > > I know others have been diagnosed with diseases and are taking > > >meds > > > > > > > for them. Do you deal with depression? > > > > > > > Have there been others here with all the blood tests and lupus > > >markers > > > > > > > and symptoms that have recovered from this disease? > > > > > > > As I've said before, maybe I can reduce the effects of the > > >disease. > > > > > > > It is depressing though to think that I might not be able to > > >make this > > > > > > > all go away. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 26, 2007 Report Share Posted November 26, 2007 , Let me know how your appt goes. I will let you know as well. Funny that you mention your mouth. My tounge has been sore and hurting for days (a little swollen). No white film or anything, very normal in color. Unsure what it is - something new (GREAT). Yep, I have had to learn to pace myself too. I try not to stress the small stuff and I take things one at a time (it is tough around the holidays). Hugs, Lynn When the tests come back positive> > > > > > Most of the time I work at having a positive attitude and being> > > "strong". I really try not to whine too much. It sounds meansomehow,> > > but I am sometimes envious of those who have all the tests and they> > > come back "negative" to a variety of diseases. I feel selfish too> > > because I know that my health right now is better than some others.> > > I have had many tests and symptoms that all indicate lupus. I have> > > been diagnosed as having lupus. This is difficult for me because I> > > begin to wonder if I will really be able to reverse all of this.Every> > > new symptom or old symptoms flaring up get me down. > > > Lately, I have been battling with depression because of this. Idon't> > > do well feeling powerless over a disease. > > > I know others have been diagnosed with diseases and are taking meds> > > for them. Do you deal with depression? > > > Have there been others here with all the blood tests and lupusmarkers> > > and symptoms that have recovered from this disease?> > > As I've said before, maybe I can reduce the effects of the disease. > > > It is depressing though to think that I might not be able tomake this> > > all go away.> > > > > > > > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 27, 2007 Report Share Posted November 27, 2007 Lynn, Another frustrating doctors apt. My rhumy is quiting his practice to teach. He will practice one day a week in another location. He totally blew me off. I had copies of several new lab tests etc that I had since I saw him in Sept. and several questions. He said I had sjogren's syndrome (autoimmune related), and didn't even take a look in my mouth or feel for swelling in my glands. He said there is nothing I can do for it. When I asked other questions he told me to see my regular doctor. I asked him to do blood and urine tests again and he said he didn't see the need to. I have never liked this doctor but this was the last straw. Then he asked if I was going to continue to see him the one day a week he would still be practicing.... I said NO... I'll find someone else. I have an apt with my regular doctor on Thurs... I'll ask him to do some of the tests maybe. I also have an apt with my NEW rheumatologist Dec 12. I get so frustrated with doctors. Sorry about the rant... maybe I'll have better luck being able to talk to my regular doctor. Keep me posted. > > > > > > > > , > > > > > > > > I am on the same page with you!! I feel envious of those with the > > > auto-immune symptoms but negative tests. > > > > > > > > I have a positive ANA. I think mine was 1:180 in December and 1:320 > > > in March - either way it is positive! I fear mine won't be reversed > > > either. Especially with all my joint pains and skin issues. After > > > hearing about your skin biopsy, I feel my sores in my hairline would > > > test the same. They don't heal!! Also, my costochondritis has flared > > > back up lately and I see plueritic chest pain is another symptom of > > > Lupus. > > > > > > > > The Lupus diagnosis scares the crap out of me. I don't want to be > > > disabled!! I want kids. I know it can be controlled by early > > > detection and medication but then I hear how bad the medications are > > > and side effects. > > > > > > > > I have a follow-up with my rheumatologist in December. I pray that > > > my ANA is perfectly normal and not up even higher. If it is up, I may > > > ask about the medications. I want to at least know my options. > > > > > > > > Hang in there and know I am here. I understand how you feel > > > and I don't feel it is selfish. I feel the same way. Just think, we > > > could have something worse. At least the prognosis for Lupus is good > > > and they are doing research on it all the time. > > > > > > > > Hugs and prayers, > > > > > > > > Lynn > > > > > > > > > > > > > > > > When the tests come back positive > > > > > > > > Most of the time I work at having a positive attitude and being > > > > " strong " . I really try not to whine too much. It sounds mean > somehow, > > > > but I am sometimes envious of those who have all the tests and they > > > > come back " negative " to a variety of diseases. I feel selfish too > > > > because I know that my health right now is better than some others. > > > > I have had many tests and symptoms that all indicate lupus. I have > > > > been diagnosed as having lupus. This is difficult for me because I > > > > begin to wonder if I will really be able to reverse all of this. > Every > > > > new symptom or old symptoms flaring up get me down. > > > > Lately, I have been battling with depression because of this. I > don't > > > > do well feeling powerless over a disease. > > > > I know others have been diagnosed with diseases and are taking meds > > > > for them. Do you deal with depression? > > > > Have there been others here with all the blood tests and lupus > markers > > > > and symptoms that have recovered from this disease? > > > > As I've said before, maybe I can reduce the effects of the disease. > > > > It is depressing though to think that I might not be able to > make this > > > > all go away. > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 27, 2007 Report Share Posted November 27, 2007 , I feel your pain. I have been there!! It is so frustrating - vent all that you need to. I was lucky and found a good rheumy. He won't say he believes in implant illness but he doesn't discredit it either. What about the Lupus? Where did that go? He decided this all on labs he barely even looked at that you brought in? Sounds like a big jerk and that you are right to fire his ass. I hope you can find a better doctor - that is ridiculous! Hugs, Lynn When the tests come back positive> > > > > > > > Most of the time I work at having a positive attitude and being> > > > "strong". I really try not to whine too much. It sounds mean> somehow,> > > > but I am sometimes envious of those who have all the tests andthey> > > > come back "negative" to a variety of diseases. I feel selfish too> > > > because I know that my health right now is better than someothers.> > > > I have had many tests and symptoms that all indicate lupus. I have> > > > been diagnosed as having lupus. This is difficult for me because I> > > > begin to wonder if I will really be able to reverse all of this.> Every> > > > new symptom or old symptoms flaring up get me down. > > > > Lately, I have been battling with depression because of this. I> don't> > > > do well feeling powerless over a disease. > > > > I know others have been diagnosed with diseases and are takingmeds> > > > for them. Do you deal with depression? > > > > Have there been others here with all the blood tests and lupus> markers> > > > and symptoms that have recovered from this disease?> > > > As I've said before, maybe I can reduce the effects of thedisease. > > > > It is depressing though to think that I might not be able to> make this> > > > all go away.> > > > > > > > > > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 27, 2007 Report Share Posted November 27, 2007 Lynn, Thanks... yes, it felt good to fire his ass.... He says I have Lupus too. Lupus first then sjogren's as a secondary autoimmune disease.... who knows... > > > > > > > > > > , > > > > > > > > > > I am on the same page with you!! I feel envious of those with the > > > > auto-immune symptoms but negative tests. > > > > > > > > > > I have a positive ANA. I think mine was 1:180 in December and > 1:320 > > > > in March - either way it is positive! I fear mine won't be reversed > > > > either. Especially with all my joint pains and skin issues. After > > > > hearing about your skin biopsy, I feel my sores in my hairline would > > > > test the same. They don't heal!! Also, my costochondritis has flared > > > > back up lately and I see plueritic chest pain is another symptom of > > > > Lupus. > > > > > > > > > > The Lupus diagnosis scares the crap out of me. I don't want to be > > > > disabled!! I want kids. I know it can be controlled by early > > > > detection and medication but then I hear how bad the medications are > > > > and side effects. > > > > > > > > > > I have a follow-up with my rheumatologist in December. I pray that > > > > my ANA is perfectly normal and not up even higher. If it is up, > I may > > > > ask about the medications. I want to at least know my options. > > > > > > > > > > Hang in there and know I am here. I understand how you feel > > > > and I don't feel it is selfish. I feel the same way. Just think, we > > > > could have something worse. At least the prognosis for Lupus is good > > > > and they are doing research on it all the time. > > > > > > > > > > Hugs and prayers, > > > > > > > > > > Lynn > > > > > > > > > > > > > > > > > > > > When the tests come back positive > > > > > > > > > > Most of the time I work at having a positive attitude and being > > > > > " strong " . I really try not to whine too much. It sounds mean > > somehow, > > > > > but I am sometimes envious of those who have all the tests and > they > > > > > come back " negative " to a variety of diseases. I feel selfish too > > > > > because I know that my health right now is better than some > others. > > > > > I have had many tests and symptoms that all indicate lupus. I have > > > > > been diagnosed as having lupus. This is difficult for me because I > > > > > begin to wonder if I will really be able to reverse all of this. > > Every > > > > > new symptom or old symptoms flaring up get me down. > > > > > Lately, I have been battling with depression because of this. I > > don't > > > > > do well feeling powerless over a disease. > > > > > I know others have been diagnosed with diseases and are taking > meds > > > > > for them. Do you deal with depression? > > > > > Have there been others here with all the blood tests and lupus > > markers > > > > > and symptoms that have recovered from this disease? > > > > > As I've said before, maybe I can reduce the effects of the > disease. > > > > > It is depressing though to think that I might not be able to > > make this > > > > > all go away. > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 27, 2007 Report Share Posted November 27, 2007 , I just don't believe he had enough time with you to give that diagnosis! It doesn't sound right. I am so sorry because I know how just the words can mess with our minds. Hang in there, keep detoxing and eating right. I think you and I can both defy the odds and reverse this auto-immune crap. Love, Lynn When the tests come back positive> > > > > > > > > > Most of the time I work at having a positive attitude and being> > > > > "strong". I really try not to whine too much. It sounds mean> > somehow,> > > > > but I am sometimes envious of those who have all the tests and> they> > > > > come back "negative" to a variety of diseases. I feelselfish too> > > > > because I know that my health right now is better than some> others.> > > > > I have had many tests and symptoms that all indicate lupus.I have> > > > > been diagnosed as having lupus. This is difficult for mebecause I> > > > > begin to wonder if I will really be able to reverse all of this.> > Every> > > > > new symptom or old symptoms flaring up get me down. > > > > > Lately, I have been battling with depression because of this. I> > don't> > > > > do well feeling powerless over a disease. > > > > > I know others have been diagnosed with diseases and are taking> meds> > > > > for them. Do you deal with depression? > > > > > Have there been others here with all the blood tests and lupus> > markers> > > > > and symptoms that have recovered from this disease?> > > > > As I've said before, maybe I can reduce the effects of the> disease. > > > > > It is depressing though to think that I might not be able to> > make this> > > > > all go away.> > > > > > > > > > > > > > >> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 27, 2007 Report Share Posted November 27, 2007 , Thousands of implant women have been dx'd with Lupus . . . Sjogrens goes with it. . . The good news is that it's one of the dx's that disappear as a woman heals. There's some parts of the testing for it that aren't quite true. (I don't know what they are.) . . . so they called it "lupus-like". Don't take this diagnosis seriously until you've had more time to recover. You don't need the stress. Hugs, Rogene Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 27, 2007 Report Share Posted November 27, 2007 Rogene, It really doesn't matter to me what the diagnosis is, as long as I can get better... which I believe I can. Thanks, > > , > > Thousands of implant women have been dx'd with Lupus . . . Sjogrens goes with it. . . > > The good news is that it's one of the dx's that disappear as a woman heals. There's some parts of the testing for it that aren't quite true. (I don't know what they are.) . . . so they called it " lupus-like " . > > Don't take this diagnosis seriously until you've had more time to recover. You don't need the stress. > > Hugs, > > Rogene > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2007 Report Share Posted November 28, 2007 ,Write all your questions down . . . Hand them to the doc . . . and ask that he answer each of them . . . Take a tape recorder with you . . . lay it on the table . . . let him know you want answers, that you are going to get better and you intend to do everything possible to do so.Hugs,Rogene Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2007 Report Share Posted November 28, 2007 I am writing everything down. I hope he has some time. I pulled out my written list of questions with my rhumatologist on Monday and he totally blew off every question I asked. I was so angry. I won't be going back to him again. I hope this doctor is better. He has been pretty good about listening so far. > > , > > Write all your questions down . . . Hand them to the doc . . . and ask that he answer each of them . . . > > Take a tape recorder with you . . . lay it on the table . . . let him know you want answers, that you are going to get better and you intend to do everything possible to do so. > > Hugs, > > Rogene > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2007 Report Share Posted November 28, 2007 ,If you'll let his desk know, they can schedule some extra time for you . . . Hugs,Rogene Re: Tests I am writing everything down. I hope he has some time. I pulled out my written list of questions with my rhumatologist on Monday and he totally blew off every question I asked. I was so angry. I won't be going back to him again. I hope this doctor is better. He has been pretty good about listening so far. > > , > > Write all your questions down . . . Hand them to the doc . . . and ask that he answer each of them . . . > > Take a tape recorder with you . . . lay it on the table . . . let him know you want answers, that you are going to get better and you intend to do everything possible to do so. > > Hugs, > > Rogene > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2008 Report Share Posted April 15, 2008 You order the 'kit' from NPTech Services and they send you a list of BMI hospitals where you can get your blood drawn. I think this is about £11. You might be able to get the nurse at your surgery to do this though. Some nurses at surgeries charge, some do it for nothing. Luv - Sheila Tests Hello,can someone tell me what I have to do to get a blood test done privately please.I believe you order it and they send you a blood bottle, but where do you go to have the blood taken? And does that cost too?Any help much appreciated xx No virus found in this incoming message.Checked by AVG. Version: 7.5.519 / Virus Database: 269.22.13/1375 - Release Date: 12/04/2008 11:32 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2008 Report Share Posted April 15, 2008 NPTech do the blood tests. Look in the files section and you will see where they are and what they charge. They send all the instructions etc. You use their envelope again by the way. The first time I chucked it and then realised that inside one of the containers is a label to stick back on the envelope. They send you a list of BMI hospitals which they have an arrangement with for a fixed charge, but if you are not near one of those hospitals, your nearest private one should do it for you. I go to my local private one as the extra cost that they charge would go on extra petrol for getting to a BMI hospital anyway. Sometimes there is a bit of a problem because they expect you to be referred by a doctor but be very insistent and you should be able to get it done. Lilian can someone tell me what I have to do to get a blood test done privately please. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2008 Report Share Posted June 13, 2008 > > Bee my tests came back normal!!!!! yay !! but i need to do a > throat thing were they stick something down it and u must be put under > i dont want to so i might not do it , i bet it is normal too ... but > everyone keeps telling me i might have allergies ??? do u think i > should do an allergy test or no .. ur advice is greatly appricated > there was an allergy parasite test that was 1 point above the norm but > he said it was in normal range i dont know what a parasite allergy > test is .... other than that everything was normal this was at a reg > doctors office .. no athritis was found ... do u know how i can check > my throat without a camera and drugs?? they said they might be able to > just use novah caine??? thanks u had throat problems too right , > spitcher muscle he said it sounds like mine might be that ????? hmmm > did u do a test and how did they do it thanks love lilly:) ==>That's fabulous Lilly! I suspected it would come back normal. Candida overgrowth occurs in the throat, voice box, etc. so it can inferfere with functioning of the spinchter muscle too. Your arthritis tests would be negative because it is caused mostly by candida toxins. Yes, I had throat problems too, but where I had great difficulty swallowing. I had an awful sore throat, and thrush treatments helped. I haven't heard of a parasite allergy test. I was tested for parasites when I had candida, but it was a stool test. It came back negative. Novacaine is usually used for dental procedures; it is applied locally and it numbs the area. It probably isn't as toxic as other drugs. No allergy tests are accurate for many reasons - see these articles: http://www.healingnaturallybybee.com/articles/menu4_1.php Lilly, I recommend you do the thrush treatments: http://www.healingnaturallybybee.com/articles/treat18.php Luv & Hugs, Bee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2008 Report Share Posted June 13, 2008 yup i have the same problem !! hard to shallow like its blocked i have to sometimes mush my food or it super small peices or i choke and cant shallow but im not in pain as i got rid of the sore throat a week ago , i bet its the same thing u had!!!! thanks bee love lilly able to > > just use novah caine??? thanks u had throat problems too right , > > spitcher muscle he said it sounds like mine might be that ????? hmmm > > did u do a test and how did they do it thanks love lilly:) > > ==>That's fabulous Lilly! I suspected it would come back normal. > Candida overgrowth occurs in the throat, voice box, etc. so it can > inferfere with functioning of the spinchter muscle too. Your arthritis > tests would be negative because it is caused mostly by candida toxins. > > Yes, I had throat problems too, but where I had great difficulty > swallowing. I had an awful sore throat, and thrush treatments helped. > > I haven't heard of a parasite allergy test. I was tested for parasites > when I had candida, but it was a stool test. It came back negative. > > Novacaine is usually used for dental procedures; it is applied locally > and it numbs the area. It probably isn't as toxic as other drugs. > > No allergy tests are accurate for many reasons - see these articles: > http://www.healingnaturallybybee.com/articles/menu4_1.php > > Lilly, I recommend you do the thrush treatments: > http://www.healingnaturallybybee.com/articles/treat18.php > > Luv & Hugs, Bee > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2008 Report Share Posted June 26, 2008 : I remember you stating that you didn't get the prognostics tests as you didn't care to know. In my opinion you have made the right choice. I just had my more complete prognostics faxed to me yesterday. I previously had the flow which showed cd38 at 1% and zap 70 negative. Those are both good indicaters. But at a recent visit my Doc and I decided to see about the other stuff. Those are the results that I had faxed to me yesterday. I now have spent the last two days trying to figure out what they mean. First and kind of important is that I am mutated. That tells me based on my recent research that I could live 25 years after being diagnosed. My diagnosis was missed for a couple of years, but if it had been caught early, I would have about 18 years left based on being mutated. I also saw that I have a 13q deletion. That is also a great prognostic. So at this point, I have Zap70 Negative, cd38 negative, am mutated, and have 13q deletion. These are four positive signs. This means I will be around a long time. But wait, I missed the p53 deletion. So I might not be around to finish this email. It was almost funny to get to this point. Just when I was feeling good about the tests, I see the p53 deletion. Per the experts, a p53 deletion is very bad and 7 or 8 years of life after diagnosis is likely. Okay I say, being an optimist, I will average it all out and still maybe have a few years left. Then I made the mistake of reading further and seeing that the worst prognostic you have is the one driving the bus. In other words if the p53 says you have 8 years and the mutated status says you have 25, the p53 wins and there is no averaging allowed. This all kind of makes me want to get extended loan terms on anything I purhase. But having said all this. I was officially DX May 1, 2003. Completed six rounds of RF 7/05. My counts had been going up in the last several months and I was headed toward second treatment eventually but I changed my egcg regimen and my ALC dropped over 20%, from 110K to 86K. And what is most important is that CLL has not been an issue in my life. Other than mentally as I am demonstrating by posting this message. But in reality even though I have the dreaded 53p deletion, I have not been deprived of any part of my life since being DX. Even with p53 deletion, I have not been limited in any way. My point is hat we are all different. If somebody reading this has a bad prognostic, it may not mean much. , I started this post to suggest that you made the right decision in not getting the prognostics and am approaching writing a short story as I have another glass of wine. Reading today that we lost Harvey was a little rough. I think it makes a person appreciate how lucky we are to have " you " , the quiet guy who just runs this thing. Then of course Dr.Furmann who is a true hero in my opinion. , I just hope that I eventually get to meet people like you, Dr. Furman, Dr. Hamblin, , Harvey, and so many others who truly give so much to others in the next place that we all wind up. I feel confident that all the names I mentioned will be there. But hopefully not real soon. Dave Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2008 Report Share Posted June 26, 2008 Dave, I believe I recently read something by Terry Hamblin that they are finding that the dreaded 11q and 17p deletions do not behave the same in mutated people. So, the p53 may NOT be the bad marker it would be if you were unmutated. Your clinical behavior, of maybe having had this for 7 years, would indicate your are not following the aggressive course associated with that marker. I think you should, maybe, look into or write Dr. Hamblin on this matter, and/or forget about it since you clearly did not die yet. Helene Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2008 Report Share Posted June 26, 2008 I have not gone deep into this so I do not really know but I thought if you have p53 you are not treated with fluradabine, in fact the protocol I am following HDMP and Campath was designed for people with p53. regards Chonette Quote Link to comment Share on other sites More sharing options...
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