Guest guest Posted June 26, 1999 Report Share Posted June 26, 1999 --- LymeDizzez@... wrote: > From: LymeDizzez@... > > Hi Everyone: OK, I saw a Lyme Literate Doctor today. > He walked in the room > and I told him my city had no idea what to do with > me and I hoped he was > truly Lyme Literate, LOL. Once he lowered his > eyebrow and I explained the > term, he grinned. After going through my medical > history, he was leaning > towards me having had a stroke or Multiple > Sclerosis. I handed him the > paperwork from all three (inept in my opinion) > doctor's notes and medical > test results and then he realized something. I had > face paralysis. Fuzzy > Brained only remembered face paralysis on one side > of my face. The medical > records showed I had face paralysis on both sides. > That was the clincher. I > > - I am so happy for you. Glad you finally found someone to listen and treat you. I know what you mean about tears in your eyes. I told my LLD I was so happy to finally have someone listen and believe me that I was going to hug him. He told me to wait until he made me better and then I would owe him 2. Am waiting for the day to give him those hugs. L(MI) > > <A HREF= " http://members.tripod.com/LymeDizzez/ " >Lyme > Disease and Me</A> > ICQ # 26791014 > Need a new FREE E-mail Address: www.phlexmail.net > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 1999 Report Share Posted June 26, 1999 Hi Deb. Good going Connie, MI Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 1999 Report Share Posted June 26, 1999 Hi . Hooray!!! Joan LI, NY Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2001 Report Share Posted April 17, 2001 Hi Clyde; I had my visit with my GI today as well. My ALTs went from 45 to 118, my ASTs went from 29 to 98. These lab numbers reflect only one month apart and a reduction of prednisone from 20mg to 15mg. When I have finished my antibiotics for the upper resp. infection and ear infection, my prednisone increases back to 20mg and my imuran increases to 200mg. This has been one crummy day (yesterday too). Sue AIH 12/98 Colorado C C McPherson wrote: I just got back from my hept visit. ALT and AST are up to 34 and 36, they were 22 and 26 :-( There is talk of either keeping my meds where they are or increase them, I was hoping for a reduction in prednisone, but it doesn't look that way now. The good news was that my liver has decreased in size, but I still have to go for monthly MRI's. I'll get the news on my meds tomorrow, after the blood work comes back (ALT, AST, and SMA). -Clyde -- =========================================================+ Help save a life, become an organ and tissue donor today.| =========================================================+ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2001 Report Share Posted April 18, 2001 Sue: I just got a call from my hept. my lft's from yesterday's blood work are ALT 178 and AST 75, the SMA (Smooth Muscle Antibody) came back positive :-( I have been increased to 30mg-3days and then 20mg until levels go down, I get more blood work in 10 days. I'm depressed, but I had normal lft's for a few months, I guess I should be happy about that. I also have to call my cardiologist and give him these numbers, he won't be happy because he may have to stop my heart medications. I have to agree, it's been one lousy week. Take Care -Clyde =========================================================+ Help save a life, become an organ and tissue donor today.| =========================================================+ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2001 Report Share Posted April 18, 2001 Clyde; Eeeu - I'll take my 20mg over 30! But, at least it is a short duration on 30 for you. I hate it at 20mg - I can't think clearly. It is a huge labor just to think out of the fog and then 'out of the box' for work! I've been at 20mg since December, except for one month at 15mg. Sue AIH 12/98 Colorado C C McPherson wrote: > Sue: > I just got a call from my hept. my lft's from yesterday's blood work > are > ALT 178 and AST 75, the SMA (Smooth Muscle Antibody) came back > positive > :-( I have been increased to 30mg-3days and then 20mg until levels > go > down, I get more blood work in 10 days. I'm depressed, but I had > normal > lft's for a few months, I guess I should be happy about that. I also > have to call my cardiologist and give him these numbers, he won't be > happy because he may have to stop my heart medications. I have to > agree, > it's been one lousy week. > > Take Care > -Clyde > =========================================================+ > Help save a life, become an organ and tissue donor today.| > =========================================================+ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2001 Report Share Posted April 18, 2001 Sue: Yea, at least it's only 3 days, but I remember the 20's weren't that good either. I remember working from home during those days, because I couldn't handle the " BS " at work on that much prednisone. I feel sorry for my wife, I hope she will still love me after the 30's and 20's. BTW: AFP is a specific test for hepatocellular carcinoma and some other cancers. I had the AFP and a boat load of other cancer marker tests when a doctor falsely DX'ed my AIH as lymphoma! They are probably checking you out because you are on imuran and since imuran hightens your risk slightly. -CLyde =========================================================+ Help save a life, become an organ and tissue donor today.| =========================================================+ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2001 Report Share Posted April 18, 2001 Sue: I hate to bug you again, but here is a reference to the AFP test if you are interested: http://www.aruplab.com/guides/clt/tests/clt_a26.htm -Clyde =========================================================+ Help save a life, become an organ and tissue donor today.| =========================================================+ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2001 Report Share Posted April 18, 2001 Thanks Clyde, I think they should have the results by tomorrow. I'll call and have it faxed to me. Your probably right, they are just checking it out. Especially since I've been on imuran for over a year now, and my dosage is high (200mg soon). The high level for my body weight is 165mg. Thanks for the web page. I read it and understand. I tried researching myself but kept on getting pages regarding pregnancies! Sue AIH 12/98 Colorado C C McPherson wrote: > Sue: > I hate to bug you again, but here is a reference to the AFP test if > you > are interested: > > http://www.aruplab.com/guides/clt/tests/clt_a26.htm > > -Clyde > =========================================================+ > Help save a life, become an organ and tissue donor today.| > =========================================================+ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2001 Report Share Posted April 18, 2001 Clyde, Sorry to hear about your labs-here's hoping that you have much better results in 10 days! Debbie OH > Sue: > I just got a call from my hept. my lft's from yesterday's blood work are > ALT 178 and AST 75, the SMA (Smooth Muscle Antibody) came back positive > :-( I have been increased to 30mg-3days and then 20mg until levels go > down, I get more blood work in 10 days. I'm depressed, but I had normal > lft's for a few months, I guess I should be happy about that. I also > have to call my cardiologist and give him these numbers, he won't be > happy because he may have to stop my heart medications. I have to agree, > it's been one lousy week. > > Take Care > -Clyde > =========================================================+ > Help save a life, become an organ and tissue donor today.| > =========================================================+ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2002 Report Share Posted February 26, 2002 Pam, My son started IVIG at age 2 1/2. It has helped so much. It was not fun, but it was something we could accomplish together. It really helped to buy him a couple of toy doctor kits and let him do IV's and blood tests on me. He played this a lot for a while and it seemed to help. I would indicate that the stick hurt (he pushed hard), but was over quickly and talk about how I needed to be really still to let the " nurse " wrap it up. My son had lots of IV's and blood work before Emla was available for him, but he loves the stuff now and uses it for IVIG. We read lots of books, watched tv when it was available, and played with a tape-recorder with a microphone. We ordered lunch, and tried popsicles or soda. He did the IVIG in the hospital for 8 months. Then, he was able to start taking the IVIG at home. We like that better. We rented videos and the nurse fed him bites of a special lunch of his choice. When he was a little older he started playing video games at home during the infusion with a rented game (a big treat for him). My son is now 14 years and has not used a port. We are picky about our nurse, some are not as successful as others at getting the IV started. Also, I think it really helps to have the same nurse. My child has a very close relationship with his current nurse. Hope this helps a little. Jan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2002 Report Share Posted February 27, 2002 Thanks, Jan for sharing your story. This is only our second treatment and the first treatment was not very smooth. They tried for 1.5 hours to get the IV into her hand. By the time we were done, the lady in the treatment room next door was crying! They did the infusion over 4 hours and Rebekah got a whopping migraine. The older kids became emotional timebombs after spending the day at the hospital. The treatment worked (a lot! Praise God), but knowing that tomorrow, we have to be there for a 6 hour infusion and thinking of the emotional fall out....I just feel overwhelmed. They promised to get a peds nurse this time for the IV. I suspect that they want to do the port for their convenience rather than Rebekah's convenience. However, I think that Rebekah would be happier if one of her hands wasn't strapped to a board for 6 hours! Pam wife to (15 years) mother to , 8, Hannah, 5, Rebekah, 2 and Leah (May 11th, 2001) Re: doctor's visit Pam, My son started IVIG at age 2 1/2. It has helped so much. It was not fun, but it was something we could accomplish together. It really helped to buy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2002 Report Share Posted February 27, 2002 Graham is almost 14 months now. He has been receiving IVIG since he was 4 months. We started out trying to access arms, legs, hands, feet, etc. but were usually unsuccessful. For about 3 months we used head veins but realized that one day that wouldn't be an option either. So we have had a port since I believe, August. For us it has been a life saver. We no longer have 2-3 people holding my son down while trying to access him. We simply apply Emla cream at home and when we arrive I hold him on my lap and he watches intently as they access him. NO tears, no problems! Take the time to weigh the pros and cons. It's not something to take lightly because you can run the risk of a blood infection. Kim, mom to Linz and Graham (Bruton's) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2002 Report Share Posted February 27, 2002 Graham is almost 14 months now. He has been receiving IVIG since he was 4 months. We started out trying to access arms, legs, hands, feet, etc. but were usually unsuccessful. For about 3 months we used head veins but realized that one day that wouldn't be an option either. So we have had a port since I believe, August. For us it has been a life saver. We no longer have 2-3 people holding my son down while trying to access him. We simply apply Emla cream at home and when we arrive I hold him on my lap and he watches intently as they access him. NO tears, no problems! Take the time to weigh the pros and cons. It's not something to take lightly because you can run the risk of a blood infection. Kim, mom to Linz and Graham (Bruton's) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2002 Report Share Posted February 27, 2002 Graham is almost 14 months now. He has been receiving IVIG since he was 4 months. We started out trying to access arms, legs, hands, feet, etc. but were usually unsuccessful. For about 3 months we used head veins but realized that one day that wouldn't be an option either. So we have had a port since I believe, August. For us it has been a life saver. We no longer have 2-3 people holding my son down while trying to access him. We simply apply Emla cream at home and when we arrive I hold him on my lap and he watches intently as they access him. NO tears, no problems! Take the time to weigh the pros and cons. It's not something to take lightly because you can run the risk of a blood infection. Kim, mom to Linz and Graham (Bruton's) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2002 Report Share Posted February 27, 2002 Graham is almost 14 months now. He has been receiving IVIG since he was 4 months. We started out trying to access arms, legs, hands, feet, etc. but were usually unsuccessful. For about 3 months we used head veins but realized that one day that wouldn't be an option either. So we have had a port since I believe, August. For us it has been a life saver. We no longer have 2-3 people holding my son down while trying to access him. We simply apply Emla cream at home and when we arrive I hold him on my lap and he watches intently as they access him. NO tears, no problems! Take the time to weigh the pros and cons. It's not something to take lightly because you can run the risk of a blood infection. Kim, mom to Linz and Graham (Bruton's) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2002 Report Share Posted February 27, 2002 Hi pam- I am a lurker- and don't write in too often. My son patrick, who just turned 4, has CVID, antibody deficiency, receives IVIG every three weeks and has since he was 5 months old. My opinion on the port- it has been a godsend for us. had his first port for 2 1/2 years and his second one is still going strong. It is great for his infusions but has also been a blessing on all of his inpatient hospitalizations for IV antibiotics as well as TPN feedings when needed. I do understand there is a chance for infection but feel all of his nurses use such sterile technique that the benefit far outweighs the possible problems. Also, when needed I can give certain IV antibiotics at home - Thats just my .02$! Hanrahan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2002 Report Share Posted February 27, 2002 Hi pam- I am a lurker- and don't write in too often. My son patrick, who just turned 4, has CVID, antibody deficiency, receives IVIG every three weeks and has since he was 5 months old. My opinion on the port- it has been a godsend for us. had his first port for 2 1/2 years and his second one is still going strong. It is great for his infusions but has also been a blessing on all of his inpatient hospitalizations for IV antibiotics as well as TPN feedings when needed. I do understand there is a chance for infection but feel all of his nurses use such sterile technique that the benefit far outweighs the possible problems. Also, when needed I can give certain IV antibiotics at home - Thats just my .02$! Hanrahan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2002 Report Share Posted February 27, 2002 Pam: I agree wholeheartedly with Ursula. When was first diagnosed at one year of age, they had a very bad prognosis for her. They felt she'd just get worse and worse, that they were practically CERTAIN it wasn't transient. Because she had multiple functional (antibody) deficits, they didn't believe she'd ever improve, that it wasn't a question of maturing. The immuno even said something odd and bizarre (when I asked if she'll have a normal life span) that basically she'll live until she dies of something. Or something cryptic like that. NICE! Well, proved them pretty wrong. Now her IgG is up to the low 500s, and her IgA that was completely ABSENT is somehow there now. They can't explain why, and we don't know if she still a little deficient in IgA but they think not. They consider her pretty normal except for her pneumococcal antibodies, which still stink and are a concern, but there's always hope. I know I spent a lot of tears and anxiety worrying about a future I could not predict. Don't let the docs do that to you... they don't know everything. Always hope. (mom to , 3yrs old, polysaccharide antibody def) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2002 Report Share Posted February 27, 2002 Pam: I agree wholeheartedly with Ursula. When was first diagnosed at one year of age, they had a very bad prognosis for her. They felt she'd just get worse and worse, that they were practically CERTAIN it wasn't transient. Because she had multiple functional (antibody) deficits, they didn't believe she'd ever improve, that it wasn't a question of maturing. The immuno even said something odd and bizarre (when I asked if she'll have a normal life span) that basically she'll live until she dies of something. Or something cryptic like that. NICE! Well, proved them pretty wrong. Now her IgG is up to the low 500s, and her IgA that was completely ABSENT is somehow there now. They can't explain why, and we don't know if she still a little deficient in IgA but they think not. They consider her pretty normal except for her pneumococcal antibodies, which still stink and are a concern, but there's always hope. I know I spent a lot of tears and anxiety worrying about a future I could not predict. Don't let the docs do that to you... they don't know everything. Always hope. (mom to , 3yrs old, polysaccharide antibody def) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2002 Report Share Posted February 27, 2002 Pam - Is it possible for anyone to help watch your other children while your at the hospital? Aren't the older ones in school while she's being infused? It would allow you to focus all your energy on Rebekah and also it would keep the others from being exposed to the hospital germs unnecessarily. Macey had a port for the first year of her infusions. When they trialed her off to see if she would mount any antibodies to various tests she lost the port to infections. It was a nice device to have but always a worry for possible infection or getting bumped. It's possible she may need another and it will be a hard decision to make. Also his opinion that she will only get worse over time. Was that without IVIG therapy or in general? That's a very dooms day approach to take to this disease. Not all PID's progress and some even resolve. Rebekah is still very young and there is always the possibility that it could resolve and function return. Technically she's still in that " transient " window of age. Keep your chin up, not all PID's are for life. Ursula Holleman Macey's mom (6 yr. old with CVID, asthma, sinus disease, GERD, Sensory Integration Disorder, Diabetes Insipidus, colonic inertia) http://maceyh.home.att.net / Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2002 Report Share Posted February 27, 2002 Pam - Is it possible for anyone to help watch your other children while your at the hospital? Aren't the older ones in school while she's being infused? It would allow you to focus all your energy on Rebekah and also it would keep the others from being exposed to the hospital germs unnecessarily. Macey had a port for the first year of her infusions. When they trialed her off to see if she would mount any antibodies to various tests she lost the port to infections. It was a nice device to have but always a worry for possible infection or getting bumped. It's possible she may need another and it will be a hard decision to make. Also his opinion that she will only get worse over time. Was that without IVIG therapy or in general? That's a very dooms day approach to take to this disease. Not all PID's progress and some even resolve. Rebekah is still very young and there is always the possibility that it could resolve and function return. Technically she's still in that " transient " window of age. Keep your chin up, not all PID's are for life. Ursula Holleman Macey's mom (6 yr. old with CVID, asthma, sinus disease, GERD, Sensory Integration Disorder, Diabetes Insipidus, colonic inertia) http://maceyh.home.att.net / Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2002 Report Share Posted February 28, 2002 In a message dated 2/27/02 5:50:34 PM Pacific Standard Time, uahollem@... writes: > Pam - Is it possible for anyone to help watch your other children while your > at the hospital? If this is not possible have you looked into the hospital services..........Ours has a hospital school on the third floor.......when Ive had to take my other kids they go up there and play on the computers or do school work if needed. Our hospital also has a " play room " set up for kids thats staffed.......you can drop the kids off while their sibbling is being treated.......its similar to a rec room...its also set up for the outpatient and in patient kids...........We go to a children's hospital Hope you can find some help le Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2002 Report Share Posted March 1, 2002 We homeschool, so my kids are always at home. I think Grandma might come to help for the next infusion. My dh is willing to take a day off from work, also. The port is looking better simply because she would have two hands free. They have her hand on a board and she spent 8 hours and 21 minutes yesterday (but who's counting) with only one hand. It got a bit tough to entertain her with only one hand! The infusion went much better. They got the needle in on the first try. But, the gammaguard wasn't in the pharmacy and they had to have someone drive it over. Then, they couldn't get it to dissolve. They didn't start the 6 hour infusion until 1.5 hours after they got the needle in. However, overall, Rebekah was less traumatized by the whole thing. But, she started getting headaches and body aches about 4 hours into the infusion. Her head still hurts today even though we are on prednisone. They gave her 10 grams at a max infusion rate of 46 mL/hour. Does that sound right for a 2 year old. About his pessimistic view of CVID, I just don't think he has ever treated a young PID kid before. He does lots of IVIG treatments, but I think that most of those patients are secondary ID kids who are on chemotherapy, not PID kids. We are getting a second opinion in 13 days (can you tell I'm excited about that?!?) Pam wife to (15 years) mother to , 8, Hannah, 5, Rebekah 2, and Leah (5-11-2001) Re: doctor's visit Pam - Is it possible for anyone to help watch your other children while your at the hospital? Also his opinion that she will only get worse over time. Was that without IVIG therapy or in general? That's a very dooms day approach to take to this disease. Not all PID's progress and some even Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2002 Report Share Posted March 1, 2002 We homeschool, so my kids are always at home. I think Grandma might come to help for the next infusion. My dh is willing to take a day off from work, also. The port is looking better simply because she would have two hands free. They have her hand on a board and she spent 8 hours and 21 minutes yesterday (but who's counting) with only one hand. It got a bit tough to entertain her with only one hand! The infusion went much better. They got the needle in on the first try. But, the gammaguard wasn't in the pharmacy and they had to have someone drive it over. Then, they couldn't get it to dissolve. They didn't start the 6 hour infusion until 1.5 hours after they got the needle in. However, overall, Rebekah was less traumatized by the whole thing. But, she started getting headaches and body aches about 4 hours into the infusion. Her head still hurts today even though we are on prednisone. They gave her 10 grams at a max infusion rate of 46 mL/hour. Does that sound right for a 2 year old. About his pessimistic view of CVID, I just don't think he has ever treated a young PID kid before. He does lots of IVIG treatments, but I think that most of those patients are secondary ID kids who are on chemotherapy, not PID kids. We are getting a second opinion in 13 days (can you tell I'm excited about that?!?) Pam wife to (15 years) mother to , 8, Hannah, 5, Rebekah 2, and Leah (5-11-2001) Re: doctor's visit Pam - Is it possible for anyone to help watch your other children while your at the hospital? Also his opinion that she will only get worse over time. Was that without IVIG therapy or in general? That's a very dooms day approach to take to this disease. Not all PID's progress and some even Quote Link to comment Share on other sites More sharing options...
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