Guest guest Posted October 18, 2001 Report Share Posted October 18, 2001 , I have learned alot this summer about different diseases and infections because I wanted to make sure I would know what the doctors were talking about. Strep if left untreated can get into the joints and cause arthritis induced by bacteria. Our new doctor has told me on several occassions that we need to get Terah well and then make sure the doctors are fully aware of the mistake they made. Tonya ________________________________________________________________ Sent via the EV1 webmail system at mail.ev1.net Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2001 Report Share Posted October 21, 2001 Tonya, Our daughter has had JRA for about 21/2 years now. Hers is a result of a strep infection that went haywire. I am so glad that your daughter is not going to have to deal with it too. Amy & Alyssa good news > Date: Thu, 18 Oct 2001 02:55:38 -0000 > > My daughter Terah was diagnosed with systemic JRA in June > of this year.Of course this was devastating to us and > changed our lives. I always complained and voiced my concerns > that despite all the medication she has been taking she was > not improving at all but actually getting worse. I often told > her doctors that after her doses of MTX and her Enbrel shots > she would actually get worse but they kept telling me it was > the disease. After 6 weeks of IV solymedrol treatments 2x a week > I could no longer agree with her doctor on her treatment. > She would only feel good for about a day after her treatments > and then she would be very ill again. She has not hardly been > able to walk or get off the couch since June and due to the > solymedrol she has gained alot of weight. She also had a IV port > surgically placed in her chest so that we would not have to > find new places for IV's. To make a long painful story short > I consulted a new doctor who ran some in depth blood tests and > sent them to some labs in California and this whole time > she has been suffering from a strep infection that got out of > control since it has not been treated. Her WBC was 26,000 and due to > the MTX her hemoglobin was 8.3 I cringe to think what would > of happened if I would of stayed with her doctor at Texas > Childrens Hospital. I just can't imagine how so many doctors > missed a strep infection and diagnosed her with JRA. When she > first became ill it took them almost 10 days before they tested > her for strep by a throat culture and she was already on antibiotics > when they tested her I guess that is why it was negative, but they > never did a blood test to test for strep. I hope no damage has been > done for her with all the unnecessary medications but only time will > tell. I want to thank the group for always being there for us. > Tonya > > > > > _________________________________________________________________ > Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp > > > > For links to websites about arthritis and JRA, visit: > http://www.geocities.com/Heartland/Village/8414/Links.html > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2001 Report Share Posted December 19, 2001 what great news!!!!!! neva __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2002 Report Share Posted February 25, 2002 Neil, hi, sorry if i haven't followed this thread, but what situation are you confronted with, and what treatment have you been using?? great news, thanks for sharing! . Neil Jensen wrote: > I just got back from the VA Hospital. The results of my blood tests > were soooo good, i just had to tell someone right away. Hemoglobin - > Normal, Liver Function - Normal, CEA markers - 0.8, White Cell count > slightly high, which is exactly what a lot of the stuff i've been > taking to stimulate the immune system is supposed to do. There is no > discernable rectal blood whatsoever! A rectal exam found a small > growth, possibly a hemorrhoid, near where the tumor used to be. > > The Nurse Practitioner who i have been seeing at the VA said that " It > looks like you're doing exactly the right thing, keep on doing it. " > Yessssss! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2002 Report Share Posted February 25, 2002 Cheers, keep up the good work and whatever you're doing, don't stop. Eileen [ ] Good news I just got back from the VA Hospital. The results of my blood tests were soooo good, i just had to tell someone right away. Hemoglobin - Normal, Liver Function - Normal, CEA markers - 0.8, White Cell count slightly high, which is exactly what a lot of the stuff i've been taking to stimulate the immune system is supposed to do. There is no discernable rectal blood whatsoever! A rectal exam found a small growth, possibly a hemorrhoid, near where the tumor used to be. The Nurse Practitioner who i have been seeing at the VA said that " It looks like you're doing exactly the right thing, keep on doing it. " Yessssss! -- -- Neil Jensen: neil@... The WWW VL: Sumeria http://www.sumeria.net/ " The welfare of humanity is always the alibi of tyrants. " -- Albert Camus Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2002 Report Share Posted February 25, 2002 Hi Neil, This is fantastic! I'm so happy for you! :-) This is a great report. Be sure to update your web page. Kind regards, Trudy From: Neil Jensen <neil@s...> Date: Mon Feb 25, 2002 4:17 pm Subject: Good news I just got back from the VA Hospital. The results of my blood tests were soooo good, i just had to tell someone right away. Hemoglobin - Normal, Liver Function - Normal, CEA markers - 0.8, White Cell count slightly high, which is exactly what a lot of the stuff i've been taking to stimulate the immune system is supposed to do. There is no discernable rectal blood whatsoever! A rectal exam found a small growth, possibly a hemorrhoid, near where the tumor used to be. The Nurse Practitioner who i have been seeing at the VA said that " It looks like you're doing exactly the right thing, keep on doing it. " Yessssss! -- -- Neil Jensen: neil@s... The WWW VL: Sumeria http://www.sumeria.net/ " The welfare of humanity is always the alibi of tyrants. " -- Albert Camus Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2002 Report Share Posted February 25, 2002 Hi Trudy, i just updated it. Heck, it's the first news -- good or bad -- i've had to report in a couple of weeks. BTW, i just found out that anything less than 3.0 is considered normal. For smokers -- i only smoke several cigarettes a day -- anything below 4.0 is considered to be normal. I realize that CEA markers are not useful in diagnosing cancer. They are, however, useful in monitoring confirmed cases of colorectal cancer. The NP was surprised, as was i, that they have not been checking these markers up until now. The result is that there is nothing to compare these results with. I suppose that's the VA for ya. I have another appointment to have them checked again on April 2. >Hi Neil, > >This is fantastic! I'm so happy for you! :-) This is a great >report. Be sure to update your web page. > >Kind regards, >Trudy > -- -- Neil Jensen: neil@... The WWW VL: Sumeria http://www.sumeria.net/ HIV plus a terminal illness will kill ya. http://www.sumeria.net/aids/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2002 Report Share Posted February 25, 2002 Hi Neil, It is not just the VA that is negligent when it comes to testing. ....you should see my medical records. Be sure to let us know what happens with your April 2nd appointment. Kind regards, Trudy Message: 19 Date: Mon, 25 Feb 2002 17:56:36 -0700 From: Neil Jensen <neil@...> Subject: Re: Good news Hi Trudy, i just updated it. Heck, it's the first news -- good or bad -- i've had to report in a couple of weeks. BTW, i just found out that anything less than 3.0 is considered normal. For smokers -- i only smoke several cigarettes a day -- anything below 4.0 is considered to be normal. I realize that CEA markers are not useful in diagnosing cancer. They are, however, useful in monitoring confirmed cases of colorectal cancer. The NP was surprised, as was i, that they have not been checking these markers up until now. The result is that there is nothing to compare these results with. I suppose that's the VA for ya. I have another appointment to have them checked again on April 2. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2002 Report Share Posted February 27, 2002 Fantastic!I am so happy for you! Thanks for the little ray of sunshine on this cold winter day! Keep up the good work. >From: " Sovereign57 " <sovereign57@...> >Reply- >< > >Subject: Re: [ ] Good news >Date: Mon, 25 Feb 2002 19:04:40 -0500 > > > >Cheers, keep up the good work and whatever you're doing, don't stop. > >Eileen > [ ] Good news > > > I just got back from the VA Hospital. The results of my blood tests > were soooo good, i just had to tell someone right away. Hemoglobin - > Normal, Liver Function - Normal, CEA markers - 0.8, White Cell count > slightly high, which is exactly what a lot of the stuff i've been > taking to stimulate the immune system is supposed to do. There is no > discernable rectal blood whatsoever! A rectal exam found a small > growth, possibly a hemorrhoid, near where the tumor used to be. > > The Nurse Practitioner who i have been seeing at the VA said that " It > looks like you're doing exactly the right thing, keep on doing it. " > Yessssss! > -- > -- > Neil Jensen: neil@... > The WWW VL: Sumeria http://www.sumeria.net/ > " The welfare of humanity is always the alibi of tyrants. " > -- Albert Camus > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2002 Report Share Posted June 18, 2002 Great News Lori. Glad is doing so well. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2002 Report Share Posted June 18, 2002 Hi Great to hear about s blood results what ever it is you are doing it's woking. Keep it up. Hugs Jeanette UK LANDJDUNCAN@... wrote: Hi EveryoneWe have just received the best news ever from 's Dr. all of her blood work came back normal, this is the first time in 2 yrs. We are so excited. The Urso must have been exactly what she needed. Thanks again to everyone for your constant support and advice.Lori ('s Mom) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2002 Report Share Posted June 19, 2002 Congratulations! Is off medicine or is she still taking it? What does the URSO do? [ ] Good News Hi EveryoneWe have just received the best news ever from 's Dr. all of her blood work came back normal, this is the first time in 2 yrs. We are so excited. The Urso must have been exactly what she needed. Thanks again to everyone for your constant support and advice.Lori ('s Mom) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2002 Report Share Posted July 1, 2002 Hi Lori, Sorry that it's taken so long to reply, but that is excellent news about 's results. Helen (UK) > Hi Everyone > > We have just received the best news ever from 's Dr. all of her blood > work came back normal, this is the first time in 2 yrs. We are so excited. > The Urso must have been exactly what she needed. > > Thanks again to everyone for your constant support and advice. > > Lori ('s Mom) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2002 Report Share Posted July 12, 2002 Just out of curiosity, why won't your insurance pay for this? [ ] Good News I was really worried about my Dr appointment today. I was going to have to try to get my Dr to order a different Rhogam shot for me. When I explained why I wanted the different brand he acted like he didn't know what thimerosal was or autism (he asked what autism does). He was open to it though. He asked if I knew what I needed so I told him the exact one and he prescribed it for me. My insurance will not pay for it but i will come up with the money for it. The Bayer Rho is $112.97. But it will be worth it to continue in my effort to stay safe. I was worried he might try to convince me to use what they had. I just wanted to share that it turned out really well. Christi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2002 Report Share Posted July 12, 2002 congratulations! it really helps to educate ourselves. karen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2002 Report Share Posted July 18, 2002 That's great news . I hope you do great. Sharon --- M B <bestofmarys57@...> wrote: > > Hi Gang ~~ > > I had my appointment with the Specialty Hep C > Clinic. Due to results from my lab work, they don't > feel that I am in need of treatment at this time. > The abdominal ultrasound and liver enzymes were > normal and no other areas were out of balance. My > viral load is at 3.9 million but without anything > else outta whack they are not overly concerned at > this point. > > They said that a liver biopsy is optional but not > required. If my curiosity gets the better of me, I > can do one. They only are recommending that I do a > liver panel again in 6 months and then again 6 > months after that. If they both come back within > normal ranges, then they would only need to be > checked every year thereafter. At this time, I > think I'll hold up on the biopsy until such point > that my liver enzymes become elevated. > > They also are not recommending any medication > changes either. This was a great area of concern > for me and has really put my mind at ease. > > So I guess I couldn't ask for anything better right > now. nbsps taken a lot of pressure off my mind. I > guess I just have to keep on eye on things and wait > and see what happens. If everything progresses at a > slow rate, then maybe there will be better > treatments with less side effects when my turn for > treatment comes around. > > Thanks for being here and being supportive. & nnbsp > Regards, > > > > --------------------------------- > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2002 Report Share Posted July 19, 2002 Thank you very much for the well wishes. I certainly feel reprieved. Good luck to you too. Sharon Zeis <szeis_1@...> wrote: That's great news . I hope you do great. Sharon--- M B <bestofmarys57@...> wrote:> > Hi Gang ~~> > I had my appointment with the Specialty Hep C> Clinic. Due to results from my lab work, they don't> feel that I am in need of treatment at this time. > The abdominal ultrasound and liver enzymes were> normal and no other areas were out of balance. My> viral load is at 3.9 million but without anything> else outta whack they are not overly concerned at> this point.> > They said that a liver biopsy is optional but not> required. If my curiosity gets the better of me, I> can do one. They only are recommending that I do a> liver panel again in 6 months and then again 6> months after that. If they both come back within> normal ranges, then they would only need to be> checked every year thereafter. At this time, I> think I'll hold up on the biopsy until such point> that my liver enzymes become elevated.> > They also are not recommending any medication> changes either. This was a great area of concern> for me and has really put my mind at ease.> > So I guess I couldn't ask for anything better right> now. nbsps taken a lot of pressure off my mind. I> guess I just have to keep on eye on things and wait> and see what happens. If everything progresses at a> slow rate, then maybe there will be better> treatments with less side effects when my turn for> treatment comes around.> > Thanks for being here and being supportive. & nnbsp> Regards, > > > > ---------------------------------> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2002 Report Share Posted July 25, 2002 Hey folks....I posted this message out to the group on July 17 and may have had a post from Sharon in reponse but no other input. This was surprising after all your previous supportive efforts. It was also at a time when several mentioned they were experincing being bounced. So there's the chance that it didn't even reach some. So though I would just resend it and ask for some feedback from you guys on whether you would do the liver biopsy at this time. Thanks so much, M B <bestofmarys57@...> wrote: Hi Gang ~~ I had my appointment with the Specialty Hep C Clinic. Due to results from my lab work, they don't feel that I am in need of treatment at this time. The abdominal ultrasound and liver enzymes were normal and no other areas were out of balance. My viral load is at 3.9 million but without anything else outta whack they are not overly concerned at this point. They said that a liver biopsy is optional but not required. If my curiosity gets the better of me, I can do one. They only are recommending that I do a liver panel again in 6 months and then again 6 months after that. If they both come back within normal ranges, then they would only need to be checked every year thereafter. At this time, I think I'll hold up on the biopsy until such point that my liver enzymes become elevated unless ya'll can recommend otherwise. They also are not recommending any medication changes either. This was a great area of concern for me and has really put my mind at ease. So I guess I couldn't ask for anything better right now. It has taken a lot of pressure off my mind. I guess I just have to keep on eye on things and wait and see what happens. If everything progresses at a slow rate, then maybe there will be better treatments with less side effects when my turn for treatment comes around. Thanks for being here and being supportive. Regards, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2002 Report Share Posted July 25, 2002 , I thought I sent a reply. I do remember the post, but maybe I sleeped up. So I am sorry that I didn't get it sent. With a viral load that high & my Doctor was not consernd. I would be seeking another Doctor. The only way for sure they can tell how much damage is done to the liver is a biopsy. The sooner you can start some kind of treatment the better off you will be. Again I'm sorry I didn't reply. Terry M B <bestofmarys57@...> wrote: Hey folks....I posted this message out to the group on July 17 and may have had a post from Sharon in reponse but no other input. This was surprising after all your previous supportive efforts. It was also at a time when several mentioned they were experincing being bounced. So there's the chance that it didn't even reach some. So though I would just resend it and ask for some feedback from you guys on whether you would do the liver biopsy at this time. Thanks so much, M B <bestofmarys57@...> wrote: Hi Gang ~~ I had my appointment with the Specialty Hep C Clinic. Due to results from my lab work, they don't feel that I am in need of treatment at this time. The abdominal ultrasound and liver enzymes were normal and no other areas were out of balance. My viral load is at 3.9 million but without anything else outta whack they are not overly concerned at this point. They said that a liver biopsy is optional but not required. If my curiosity gets the better of me, I can do one. They only are recommending that I do a liver panel again in 6 months and then again 6 months after that. If they both come back within normal ranges, then they would only need to be checked every year thereafter. At this time, I think I'll hold up on the biopsy until such point that my liver enzymes become elevated unless ya'll can recommend otherwise. They also are not recommending any medication changes either. This was a great area of concern for me and has really put my mind at ease. So I guess I couldn't ask for anything better right now. It has taken a lot of pressure off my mind. I guess I just have to keep on eye on things and wait and see what happens. If everything progresses at a slow rate, then maybe there will be better treatments with less side effects when my turn for treatment comes around. Thanks for being here and being supportive. Regards, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2002 Report Share Posted July 25, 2002 Hi, , Sorry if I didn't respond to your query. I guess I just have to keep on eye on things and wait and see what happens. If everything progresses at a slow rate, then maybe there will be better treatments with less side effects when my turn for treatment comes around I think you've made the right decision, to wait and see. It sounds like your are in good hands medically. However, it might be worth getting a second opinion to Pluto your mind at ease. Regards, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2002 Report Share Posted July 25, 2002 Hi , As Terry said I would question the fact that you do have a viral load of over 3 million and told it is ok to not do any treatment. The purpose of the treatment is to try to get the viral load to be undetectable and put the virus in a remission.. I agree with Terry that you should tell your family about the Hep C. Family support is very important in your battle to fight the dragon. If you really feel that you don't want to burden your family, then maybe you could tell your brothers who already have the disease. Hang in there .... We are all here for you. I have been back and forth and missed a lot of mail. BTW: Welcome to the group!! ;o Happy Vacation to you and Terry and -dz- who is planning to go and just got back.... LOL... Hi Gang... Missed you all..... Angel Hugs, Diane May Rainbow Dreams Color Your World With Love, Hope, Peace & Unity Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2002 Report Share Posted July 25, 2002 Sorry yall I had PC problems...I'm finally back though!! I'll write more later..I'm also on the phone..REAL BUSY right this minute but thought I"d say hi to ya!!!!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2002 Report Share Posted July 25, 2002 It sounded like you had made up your mind about waiting on the liver biopsy. To the best of my knowledge the liver biopsy is the only true way to measure what, if any, damage your liver has sustained. People with high virile loads and high enzyme levels sometimes exhibit little liver damage and vice versa. I would feel more comfortable having the biopsy done. -dz- M B <bestofmarys57@...> wrote: Hi Gang ~~ I had my appointment with the Specialty Hep C Clinic. Due to results from my lab work, they don't feel that I am in need of treatment at this time. The abdominal ultrasound and liver enzymes were normal and no other areas were out of balance. My viral load is at 3.9 million but without anything else outta whack they are not overly concerned at this point. They said that a liver biopsy is optional but not required. If my curiosity gets the better of me, I can do one. They only are recommending that I do a liver panel again in 6 months and then again 6 months after that. If they both come back within normal ranges, then they would only need to be checked every year thereafter. At this time, I think I'll hold up on the biopsy until such point that my liver enzymes become elevated unless ya'll can recommend otherwise. They also are not recommending any medication changes either. This was a great area of concern for me and has really put my mind at ease. So I guess I couldn't ask for anything better right now. It has taken a lot of pressure off my mind. I guess I just have to keep on eye on things and wait and see what happens. If everything progresses at a slow rate, then maybe there will be better treatments with less side effects when my turn for treatment comes around. Thanks for being here and being supportive. Regards, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2002 Report Share Posted July 25, 2002 Diane, I have been missing you also. Does anyone know what's up with Jan, I haven't seen a post from her in over a week. Terry diane214@... wrote: Hi , As Terry said I would question the fact that you do have a viral loadof over 3 million and told it is ok to not do any treatment. Thepurpose of the treatment is to try to get the viral load to beundetectable and put the virus in a remission.. I agree with Terry thatyou should tell your family about the Hep C. Family support is veryimportant in your battle to fight the dragon. If you really feel thatyou don't want to burden your family, then maybe you could tell yourbrothers who already have the disease. Hang in there .... We areall here for you. I have been back and forth and missed a lot of mail.BTW: Welcome to the group!! ;o Happy Vacation to you and Terry and -dz-who is planning to go and just got back.... LOL... Hi Gang... Missed youall..... Angel Hugs, DianeMay Rainbow Dreams Color Your World With Love, Hope, Peace & Unity Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2002 Report Share Posted July 25, 2002 I was wondering the same thing. I hope she's OK. Are you out there Jan? Sharon --- Terry Long <pawpawto3@...> wrote: > > Diane, I have been missing you also. Does anyone > know what's up with Jan, I haven't seen a post from > her in over a week. > Terry > diane214@... wrote: Hi , > As Terry said I would question the fact that you > do have a viral load > of over 3 million and told it is ok to not do any > treatment. The > purpose of the treatment is to try to get the viral > load to be > undetectable and put the virus in a remission.. I > agree with Terry that > you should tell your family about the Hep C. Family > support is very > important in your battle to fight the dragon. If you > really feel that > you don't want to burden your family, then maybe you > could tell your > brothers who already have the disease. Hang in > there .... We are > all here for you. I have been back and forth and > missed a lot of mail. > BTW: Welcome to the group!! ;o Happy Vacation to you > and Terry and -dz- > who is planning to go and just got back.... LOL... > Hi Gang... Missed you > all..... > > Angel Hugs, > Diane > > May Rainbow Dreams Color Your World With Love, Hope, > Peace & Unity > > > > > Quote Link to comment Share on other sites More sharing options...
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