AJVDK

I think its great you are seeing a coulser. ( I see one to, and it helps!) The other thing is also try to stay postive, and look at things in a brighter light. Things could be much worse. Tell yourself I am going to make it though this. I have found that it makes it much easier to get thought things. Learn to laugh, and smile. Learn to see the good in why you are going though this illness. I find one positive thing is I use to work so much I missed everything with my son. Now we are best friends. I get a "do over" at rising my son, and for that I am greatful. My illness has tought me to slow down and enjoy life everyday, and enjoy little things now.

Nina, thanks for letting us know. My thoughts and prayers are with Mary's family.

Hello All, I thought I would let you know that I am having to have surgery again in the am. I am having to have my old cenral line pulled and a new one place. Get this my luck is so bad that when my doctor was removing the stiches around the line, he poked a hole in the line. So I now have to have a new one placed. So please say a prayer or keep the surgey in your thoughts, I am having the worset luck anymore! Talk to you all later! Amy

End of summer is coming, and fall is on its way. What better way to end the summer, and start the fall, then by getting a new t-shirt. For only $15.00 you can get a Dinet t-shirt, All profits are going to help support Dinet with its upcoming documentary. Also it?s a great way to let others learn about Dysautonomia. Also you can make donations to dinet for the upcoming documentary at http://www.dinet.org/how_you_can_help.htm?3de33fe0 Please, if you can make a donation, every bit helps. If every member donated $1.00, we would already have a big start on the project. (We have 1142 members on the forum x $1.00= $1142.00) Also don?t forget this holiday week end (Labor Day US) to say ?thank you? to everyone working hard to keep dinet running, from Michelle, keeping Dinet going every day, year after year (GO MICHELLE!). To our AWSOME MODERATORS, Mighty Mouse, Sunfish, Rachel and Flop. Also big thank you needs to go out to everyone that helps behind the scenes, from making the newsletters, to mailing brochures, to the ?meet other programs?, ?faces of dinet program? and our Medical Advisors! TO ALL OF YOU THANK YOU! Have a great Labor Day Weekend!

Mine is also in the 96 range. Getting sick for me is 99-100. When I had the infection last time my "fever" was only 101.3 I guess you know your body the best. If you think its high for you , you could all the doctofs office and see what they think! How you start feeling better soon!

I am not sure how to answer the question, but I wanted to let you know I was thinking of you! Hope thing will get better for you!

Thanks evreryone. I am sure hoping for better days ahead! I finally al at least up an moving. I am really sore and am not lasting long but at least I am moving around.! Again thanks for the support! Amy

Hey All, Sorry I not been around much. But I have been having a hard time lately. Also sorry for the delay with any of the t-shirts over the last two weeks as I was unable to fill orders. But I am back to filling and shipping out the T-shirts yeah! So don?t forget to get your dinet t-shirt! Well the reason I been so down is as many of you know not only do I have POTS, and NCS, but I also have Lyme disease. Well this month I under went a scope of my tummy and found out I had 4 ulcers, one being a bleeding ulcer, I had to have surgery and have my Port removed due to a problem, and a central line place to receive my abx, and fluids. Then to top it off I just found out, I have a co-infection with the Lyme disease called Babesia. So I am starting new meds for that, but am having problems handling it. So that?s been my month and while I not been around. I am hoping though now that the doctor know what?s going on that I can get the treatment and finally start feeling better. That would be really nice. Hope you all are doing well! Take Care, Amy

Congrarts! I am so happy for you! I am still fighting mine. I am two years in, and waiting for my appeal. I am not going to give up. I am hopping to see it approved one day! I am so happy for you, I bet that was one great day!

Hello All, I thought I would drop a line and say hello, and let you all know I am going to be having surgery today at 7:00 am. I am getting a PORT place. They are unable to get veins in my arms anymore, and I have one though 7 PICC lines so they said it?s time for a port. I am a little uptight about it. I talk to the doctors about my worries?. Like infection is the big one but they (all my doctors) believe it the best option as I need long term ABX, and fluids. I am hoping that in time I will no longer need the ABX for the lyme, and that I will be able to get it removed. So now I am going to have 4 boobs??. (That what I feel like my 2, plus my pacer, and now my port.) Due to me being down lately and now having surgery there may be a delay in the t-shirt orders. I hopefully once I get this port places, and am able to get the meds I need, and get though all the POTS Stuff that goes along with surgery that I will be up and around again early next week! Hope you all have a great 4th of July!

Nina, I am glad you are up and getting around. I hope you start feeling better soon. Thinking about you, and sending ((((((hugs from Iowa))))))).

Nina, I will be keeping you and your step father in my thoughts and prayers. I wish there was more i can say, I will be praying for you both. Sending ((((((HUGS))))))) from Iowa!

Hello, I been on IV fluids and ABX. for over the last eight months. I can say IV fluids do help, But I would like to say, from my own experince is that only do them when nothing else works. I been sick for over 10 years, I have NCS, POTS, and Lyme. I tried so many treatment, and am having to use fliuds to help with my blood prussure, after my last heart abltion, and pacer place I begain to have a hard time keeping my blood prussure up, so going to Mayo, Cleveland, and seeing many doctors in the area, trying everything from loading salt, to meds, to compression stockings........ After trying all these things then I was left with trying fliuds. I also have a alot of problems with nause..... so I have a hard time keeping fliuds to begain with. That being said if you need them,I would first try the ER, or in a doctor office, or infustion center. I would try to adviod a PICC, central line, port if you can. If you can stay with a PeripherallyIV line and have no problems getting an vein. I would go for that. Also one thing to think about is IV fluids cost alot, and you need alot of follow up care. For me I have a nurse come on to my house three time a week (when I first started it was just once a week, I begain to have problems with my PICC, for the ABX, plus I can not handle tapes..... so I had to go to a clothe dressing. Also I am not trying to scare you but I want you to have the hole picture. PICC, cost alot, Mine have been $3,500- 4,000 each. You then have the follow up care to think about, supplies ( like pump, pole, tubing, ect.). You need to make sure your insuracne company will cover it. Mine did as I tired verything else, and been to so many doctors. Plus my cardio was the DR. to order my first PICC, after that is been up to my lyme doctor, and my PCP for the orders. But all the doctor know whats going on with the care. They next thing is saftey. There is a high risk of infection. You need to think about your quality of life, and weight out the risk of infection, sepsis, Bleeding. I am not trying to scare you, I just want you to see the whole picture. Do you have an ANS doctor to talk it over with? I hope others can give there imput. I turly beleive fliuds work, but i think if you can get away with just using them on a as needed bases at an ER, or infusion center, I think it would be better, but that just my option after going though it. Here's a little info on lines: (http://en.wikipedia.org/wiki/Intravenous) Peripheral IV lines This is the most common intravenous access method in both hospitals and paramedic services. A peripheral IV line consists of a short catheter (a few centimeters long) inserted through the skin into a peripheral vein, any vein that is not in the chest or abdomen. Arm and hand veins are typically used although leg and foot veins are occasionally used. On infants the scalp veins are sometimes used. Part of the catheter remains outside the skin, with a hub that can be connected to a syringe or an intravenous infusion line, or capped with a bung between treatments. The caliber of cannulae is commonly indicated in gauge, with 14 being a very large cannula (used in resuscitation settings) and 24-26 the smallest. The most common sizes are 16-gauge (midsize line used for blood donation and transfusion), 18- and 20-gauge (all-purpose line for infusions and blood draws), and 22-gauge (all-purpose pediatric line). 12 and 14-gauge peripheral lines actually deliver equivalent volumes of fluid faster than central lines, accounting for their popularity in emergency medicine; these lines are frequently called "widebores" or "trauma lines." Blood can be drawn from a peripheral IV if necessary, but only if it is in a relatively large vein and only if the IV is newly inserted. Blood draws are typically taken with specialized IV access sets known as phlebotomy kits, and once the draw is complete, the needle is removed and the site is not used again. If a patient needs frequent venous access, the veins may scar and narrow, making any future access extremely difficult or impossible; this situation is known as a "blown vein," and the person attempting to obtain the access must find a new access site proximal to the "blown" area. Originally, a peripheral IV was simply a needle that was taped in place and connected to tubing rather than to a syringe; this system is still used for blood donation sets, as the IV access will only be needed for a few minutes and the donor may not move while the needle is in place. Today, hospitals use a safer system in which the catheter is a flexible plastic tube that originally contains a needle to allow it to pierce the skin; the needle is then removed and discarded, while the soft catheter stays in the vein. The external portion of the catheter, which is usually taped in place or secured with a self-adhesive dressing, consists of an inch or so of flexible tubing and a locking hub. For centrally placed IV lines sets and flushes contain a small amount of the anticoagulant heparin to keep the line from clotting off, and frequently are called "heparin locks" or "hep-locks." Heparin is no longer recommended as a locking solution for peripheral IVs however. Saline is the solution of choice for a "vac lock." A peripheral IV cannot be left in the vein indefinitely, because of the risk of insertion-site infection leading to phlebitis, cellulitis and bacteremia. Hospital policies usually dictate that every peripheral IV be replaced (at a different location) every three to four days to avoid this complication. [edit] Central IV lines Central IV lines flow through a catheter with its tip within a large vein, usually the superior vena cava or inferior vena cava, or within the right atrium of the heart. This has several advantages over a peripheral IV: It can deliver fluids and medications that would be overly irritating to peripheral veins because of their concentration or chemical composition. These include some chemotherapy drugs and total parenteral nutrition. Medications reach the heart immediately, and are quickly distributed to the rest of the body. There is room for multiple parallel compartments (lumens) within the catheter, so that multiple medications can be delivered at once even if they would not be chemically compatible within a single tube. Caregivers can measure central venous pressure and other physiological variables through the line. Central IV lines carry risks of bleeding, bacteremia, and gas embolism (see Risks below). There are several types of central IVs, depending on the route that the catheter takes from the outside of the body to the vein. [edit] Peripherally inserted central catheter PICC lines are used when intravenous access is required over a prolonged period of time, as in the case of long chemotherapy regimens, extended antibiotic therapy, or total parenteral nutrition. The PICC line is inserted into a peripheral vein under ultrasound guidance, usually in the arm, and then carefully advanced upward until the catheter is in the superior vena cava or the right atrium. This is usually done by feel and estimation; an X-ray then verifies that the tip is in the right place. A PICC may have two parallel compartments, each with its own external connector (double-lumen), or a single tube and connector (single-lumen). From the outside, a single-lumen PICC resembles a peripheral IV, except that the tubing is slightly wider. The insertion site must be covered by a larger sterile dressing than would be required for a peripheral IV, due to the higher risk of infection if bacteria travel up the catheter. However, a PICC poses less of a systemic infection risk than other central IVs, because bacteria would have to travel up the entire length of the narrow catheter before spreading through the bloodstream. The chief advantage of a PICC over other types of central lines is that it is easy to insert, poses a relatively low risk of bleeding, is externally unobtrusive, and can be left in place for months to years for patients who require extended treatment. The chief disadvantage is that it must travel through a relatively small peripheral vein and is therefore limited in diameter, and also somewhat vulnerable to occlusion or damage from movement or squeezing of the arm. [edit] Central venous lines There are several types of catheters that take a more direct route into central veins. These are collectively called central venous lines. In the simplest type of central venous access, a catheter is inserted into a subclavian, internal jugular, or (less commonly) a femoral vein and advanced toward the heart until it reaches the superior vena cava or right atrium. Because all of these veins are larger than peripheral veins, central lines can deliver a higher volume of fluid and can have multiple lumens. Another type of central line, called a Hickman line or Broviac catheter, is inserted into the target vein and then "tunneled" under the skin to emerge a short distance away. This reduces the risk of infection, since bacteria from the skin surface are not able to travel directly into the vein; these catheters are also made of materials that resist infection and clotting. [edit] Implantable ports A port (often referred to by brand names such as Port-a-Cath or MediPort) is a central venous line that does not have an external connector; instead, it has a small reservoir implanted under the skin. Medication is administered intermittently by placing a small needle through the skin into the reservoir. Ports cause less inconvenience and have a lower risk of infection than PICCs, and are therefore commonly used for patients on long-term intermittent treatment.

Sorry to hear about your appointment at CC. The one thing I can say is I had to fly out to CC for test and to see the DR. there. IT set me back alot of money also. They one good thing for me is I got a DX finally. The bad thing was that there was no real follow up, and it more of DX place, find out whats going on with you, but I felt more like it was up to my local doctors to fix it. I even left with orders one was for Cardio Rehab, but due to the orders being out of state I was never able to get it done back home. I was upset that I finally now whats wrong but still have to fight to find treatment. In fact two years later, I am still fighting all the POTS sutff, now more then ever after starting the lyme treatment, and I still seem to be fighting a losing battle when it come to treatment. The only thing I have in my favor is my family doctor keep trying new things and is not will to give up on me. Although some times the way I feel, I feel like giving up with oushing to get better. I somtimes thing maybe I sould just give in and learn this is my life. But to me ay 28, I should not be stuckk in most of the time, havn't been able to work in almost 2 years, I have no life. I don't want to give up hope! I just wish that these doctor would understand, when we go for another option, for help, that we really ned it and that we really want to get better, not just say you have POTS. Again, I am really sorry to hear about your appointment keep your head up. (((((((HUGS))))))) form Iowa!

I just wanted to drop a line and say I am sorry to hear about your vist to the ER. I hate going to the ER. I think is always odd the they no nothing about POTS, but after not being about to get your heart rate done, or b/p up ( I had both happen) that they say it must be your POTS, send you home and say follow up with your doctor. I alway have thought..... would they do the same thing if I never told them I had POTS. I somtime get fustarted that there is not more they can do to make us feel better.

Hey All, Well I have not be around much, I been having a hard time lately. I was hoping by now, with all the lyme treatment that I might start seeing some improvement, but I am not seeing much. In fact last month I got DX with arthritis caused from the lyme. So they started me in physical therapy for the arthritis. PT has been going slow, and after I seem to be in more pain then before going. Although I know I need to go as I want to be able to walk, and use my hands. One day a few weeks ago I woke up and all my fingure where curved in and would not open, my hands looked like claws ( I was scared they where going to stay like that, over time working with them they have gotten some better, but I am afraid that they are going to go back like that.) Also I find myself wanting to know what when I wake up is going to be in pain or not going to work. I try to keep telling myself things could be worse? I try telling myself that I am lucky that POTS, and even Lyme is more of a long term illness so I am lucky for that?? Do you ever find it hard to stay positive? Also I have been having a hard time with migraines again, and vomiting and nausea. Which is making it a hard with the POTS as my b/p is going low, and then I have to do more IV saline as I can?t keep anything down. Plus they can?t give me much more for pain meds as my b/p is too low, plus to top it off I can?t take my BB when it?s this low also. So I have to try to deal with the pain, and my heart racing. So I am hoping things are going to finally come out of all of this. They starting me on a med today to help with the nausea, and it have helped some. I finally was able to get to the computer tonight! Yeah! So I am hoping this will start improving. If anyone has any ideas of anything that has helped you with migraines, please let me know. ( I can?t take many of the migraine meds at I have had problems with my heart with many of them, so right now I am fours to ride them out, and when my b/p is high enough they will allow me to receive a pain shot.) Also for those this arthritis, as good ideas to help with the pain. The one thing I have found that has helped is sitting in a whirl pool tub, but I can?t handle it very long, and I get dizzy, so I am trying to look of other things, I have two large heating pads that I use also. I was hoping that there may be some good ideas out there! Thanks for listing! Hope you all are doing well and thanks for all the support!

Sara, I wanted to drop a line and say welcome to the forum, I am gald you found us. When I first found out I had POTS I was finally happy I was able to have a name for eveything going on, the down side was that I never heard of it or had any of my family. I was so happy when I foud this site 2 years ago. It has been a saving grace for me to know others form here, and even made great friends. THe support I have found here has been great. I hope you find a treatment that will work for you, so that you will be able to follow your dream, and not have to slow down! Thanks for sharing with us!

Sorry to hear about all your problems. The one thing I will say, is never give up on finding treatment to help you feel better. I tried many meds, and different treatments. I gone for a 2nd, and 3rd option, at Mayo, and the clevelvand clinic. I afound that each place you find new information, and differnent treatment ideas. I think it would be a good idea for a 2nd option, a new look at your records, and running new test may find a new idea, or find somthing else that could help you. One thing that is nice is there are many drugs that can help out there. Right now I am on a combo of IV fliuds, procrit, bb, and starting to seem some improvements. The this I can say is its somtimes a slow go to find the right meds, kind of trail and error, but I beleive it worth it to find the best quailty of life eaxh of us can have. I am trying to find the right mix along with my lyme treatment so that I can one day return to work! Hope you start feeling better soon!

BB have helped me alot. They help me with my racing heart, but the down side for me is they lower my bp alot. So I have found that taking smaller amonts thought the day is much better then taking a large amount once a day. It was a trail and error thing for me.

Wow! Thanks for giving us the info. It made me stop and think about my treatment, I would like to know more about the effect when lyme is involed in your heart as I had alot of problems that are heart, and nero. So I am going to talk to my LLMD. My nero question the treatment, but my EP is for it, also and agrees with my LLMD so I am like in a rock in a hard place, but it sure makes you think the line about quality of life, that very upsetting...... as I don't want to stay this way. I had lyme 8-10 years it what they beleive. I been treated now on abx for 3 months, and only made a small improvment. Now you find yourself asking I had a postive lyme test, and I have POTS/NCS but do I have somthimg else..... or is this my life now. I don't want to settle on the fact I will not work again at 28. I can't. At this point my doctor will not let me work. I find it hard to get out of bed most days. I even have to use oxygen at nights, and when I drop to low. Theres got to be some improvement! Sorry for going on. But lyme is so misunderstood, and everyone beleive different things. Again thanks for posting the artical!

Hey all, This is a very hard topic for me as I am sick with chroic lyme. They belive I have had it for 8-10 years. I had postive blood test, and I on IV abx with now. I am the first one to say I am worried about the out come. But at this opint being sick this long I felt I had no choice and am doing what the LLMD belives I should. I have a good LLMD and is well know. ON nice this is they are looking at the POTS/ NCS also when treating. I think abx treatment needs to be weighed out. And for me my quality of life was gone. They believe the heart problems I have are due to the lymes, I had 2 surgeies, and pacemaker placed, after the pacer was placed I only got sick as they didn't know I had POTS, I had problems with my galbladder, had to have it remove, I am in so much joint pain I can hardly handle it. They found lessions on my brain, and I have one mass, which right now they are just wacthing. I am to they point if this will help, why not. I have nothing to lose. I quality of life is nothing. I have not worked in 17 months, I gave up my dream job, I spend most of time in bed with 2 heating pads on my joints, and I have to use oxygen on they real bad days. I felt it was my last option. If this can improvme my life at all I felt I had nothing to lose. I know that it should be a person to person chose, and you need to really think about the rick, but for me and my family, I feel it the best chosie. Just my thoughts on the subject! Talk to you all later

I wanted to drop a line and say "Welcome". I am gald you found the forum!

Sorry to hear about how bad you are feeling. I think you should really talk to your doctor. It may be the med. I know I had problems with Cymbalta. I was put on it to help with POTS, and it never did. I fact I was more depressed on it the off, which is kind of odd as it an anti-depressant. Hope you start feeling better soon, and get back to Oxford! Please keep us posted!

Congrats on being able to work from home! Thats great I am happy for you!

Hello! I just wanted to drop a line and say "Welcome" I am gald you found us! I found out I had POTS also a Mayo in MN. I went on for a second option at the Cleveland Clinic I got the same. I had to give up work also when I was 26. I have not worked in 16 months. I miss it alot. I find that still don't have that many good day, but also I think we learn to cope, to the new life. I am still trying to find my "quality of life" the only problem is I think I push and want more then its going to be. I am still trying to find the right meds, and treatment. I also have lymes, so the treatment for that has caused some problems this the POTS. I wish you the best, and hope you find a great support system here. Again Welcome!