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Hello, I am also on of the ones that have both Lymes, and Pots. I am On IV Rochphin right now for the Lymes. I am gettign treated with the POTS with meds and IV fliuds. One thing I found is its been a long road in treating the Lymes and POTS. I am also in Beta BLocked I take it three times (lower dose to help with the lower b/p) Do you have a LLMD. THe one I have said there are a few Lyme/ POTS people on his office, one nice thing about that os that hes treated them before. Also the one thing I found is that some Cardio doctor don't know about POTS, I had to go though a few doctors before finding one that new about it. The one thing I am finding is it kind of trail and error. Right now I having a hard time with the abx. I am hoping things imprive soon. I am just going to keep fighting untill I beat this. I wish you luck in finding whats all going on. Amy

Nina- Thats nice that your doctor thought it was pretty cool!

Help Support Dinet! Summer is coming and what better way to break in the summer 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 know 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 1084 members on the forum x $1.00= $1084.00) Thank you for your time! Amy P.S. - Also if you have any great T-shirt Stories please let us know!

Anyone have any good ideas to help with joint pain. I am having alot of problems woth joint pain. I am taking 3-4 baths a day just to soak in the tub. I am on pain meds, but don't want to go any higher does. Also any good ideas to help when mirgaines come on. I hide in the basement, and use ice, I used heat, rice packs.... the bad thing is I end up finding the only thing that I found to break them right now is shots. My nero has me on a med right now buts it now doing anything, so I thought if there anything that has helped you all I could give it a try. Thanks for any imput!

I just wanted to drop a line and let you know I was thinking about you. I am sorry its been so bad latly with the doctor. I will say don't give up. I was ready too, after I got sepisis in Jan. I felt like I was out of options, and I finally tired on last time, and I finally got some answers... when I found out I had lymes..... It may not be lymes for you but hang in there and hopfully they will find whats going on with you. Now I am on a treatment plan, and things are slow, but at least I finally gor a game plan, and the doctors are working on the ans stuff and the lymes, and I at least feel like I am keeping my head above water now! I hope things will get better for you, and that with these appointments coming up that you fnd some anwsers. Take Care!

Angela, Hello and Welcome! There are alot of great people here who have been a great support for me over the last two years. I hope you find that here too! Sorry I am just getting to this post I been down that last few days. I would agree about the meds. It's kind of trail and error. If you feel it not working I would let the doctor know. I can say when I went OH, to a POTS doctor, they but me on a timed Midodrine 6 times a day. I think I was like 6, 9, 12, 3, 6, 9 (9 was the last as I was going to bed) but it worked the best. Before that I was on it 3 times a day. The doctors also had to play trail and error with the dosing. One thing I will say is keep pushing to find the meds, to get you the right place. Don't let POTS define your life, Let your life define what your POTS will be. It's easy said then done. I had to give up working due to POTS, NCS, Lymes, but I fighting to make sure I find a quality of life that I want. It been a long battle for me, but thats ok I keep telling myself at the end of this it going to make me a better person. Plus it make me slow down and enjoy my life, and spend time finally with family and friends, and mostly my son. Before I got sick I worked 60 plus hours a week, and then even came home and then would do paper work, I never spent anything with my husband and son. Now I can. So I try to find the postive in this hole thing. Beleive me I have my bad days, But I am trying to stay postive. Hope things start improving, and gald you are able to get back to work! Take care!

This is just a thought, but I problems with the pill form of clonidne, But the patch worked great for me. I was able to handle the patch much better. Just a idea for you. One nice thing to about the patch is it last for 7 days also so it less pills to take. (I did better with sleeping on the patch) There was on night when I was on the pill, (i also had a pain pill, and my heart med that night) but I thought all the picture on my walls came to life and I was freaking out I woke my husband up the was telling him, I stopped taking Clonide after about 3 month and I felt did better off of it. I would talk to you doctor, and tell him/her everything. Hopfully your doctor will understand and can find whats going to be best for you! Good luck

Thanks everyone! IT's been a long day with health stuff, but it means so much for all of you to wish me a Happy B-day! Thank you sooooo much! Amy

Wow, what a day! Are the going to do anything about the heart attack you had? At least now you also have some answers, like when it happen. I hope the stocking will help you. Wanting to let you know I am thinking about you, and I am glad you got to come home! Hospitals are no fun! Take care!

I just wanted to drop a line and say I am thinking about you! I hope thing keep getting better for you!

Thanks for all the info you all added. I am really having a hard time with this, as my quality of life is so bad, and we did a test run last month with out a PICC, and I got so sick, so my health care proviers all feel, along with me that at that time I needed to have the abx, and fluids. We have tried in the last 3 years every med out there and nothing works, it even to the point that there may be more wrong then we think. I am just to the point I can't handle anymore test. The reason I got to the point of picc, port, or stoping was there are some many people in my health care telling me all different things. The only thing they all agree is that I need the fliuds, and abx. I was the one that was to the point of stoping as I am sick of the infections. Sick of worry about everything I get hot, and cold feeling and dizzy asking myself is this an a infection coming on again or is this just me. And my body just seem to reject the picc's. The proplem is at this time the risk out ways anything at all. Is hard as there is so much on the line, but I also beleive there has to be quality of life, or its really hard to go on. I know I am on a very fine line, and I am also going to get a 2nd option, to see what they think. I know so times you need somone not so close to see if there is somthing we are missing. But the thing is when I got the infection the first time and was in the hospital for 7 days, the took me off of the fliuds to try so test it in the hospital , and I passrd out on thrm also, it comes to a point of safty for me also. They agreed and they where the one to place my second line. This was also a 2nd cardio, and nero doctor. Thats why this is so hard is the done side of stoping. I do think that is I could go to a differnt, med and do the four days on 2-3 days off, as some lyme people do and do a normal line, that that could be safer, but they have so much problems getting my veins we are now done to my legs, and neck for that, but if that what could be safer then it an idea. I am going to talk to my doctors. Again that you all for the input, and hopfully you all see why this is so hard for me. I just don't know what to do, at this point my picc line is holding out, but not for long, so I am hoping I will find whats right for my safty, and for the quality of life! Talk to you all later!

Dizzy, I wanted to let you know that I would not change my son for anything. Due to my health problems he was born 8 weeks early, but hes doing great now, and is 5 years old. There are days when I am unable to watch him, and take care of him. Lucky my husband family helps out alot. When I am donw they take him to school, and take them there house to play. I use to be really down about it, but really it great for him, he get the best of both worlds, he get to spend time with all these people, plus my son is what keeps me going on bad days, it lets me know why I keep fighting. FOr a while he thought about adption since my husband was. Right now its now the right thing for us, but maybe one day we will. I wish you the best!

I wanted to drop a line and say good luck with your MRI! Let us know how it goes!

I think what we are going to do right now is I talked to my doctor today, and we are going to baby this PICC along that I have no, unless the bloodcultures come back bad, (get those friday) Then when this line goes bad we are going to go with another PICC, as I need the abx. We pulled a PICC about due to infection last month, and left in out 4 days, I got so sick, I was passing out, headaces, jointpain, neck pain, everything came right back from the lymes, plus I was so dehydate (sp?) They doctor had me do extra fliuds, just to get back to a base line. I am not sure if the lymes, pots, ncs, low blood volume, or what is causing all the problems. Lois- My cardio was the first one to but my PICC in at we where out of otions, it was the same doctor that but my pacer in. I am vert worried about getting my pacer area infected. The on good thing is the are drawing bloomd all the time making sure I an not geting an infection, as they are very worried also, but right now we have nothing better to try. I am not sure what to due, I thought about going back to Mayo, or Cleveland, but I am not sure I would learn anything new. I guess that where I am at. I really want to get better. Thanks for all the support!

PICC, PORT, or just give up and wait a while? Ok, my PICC is going, my doctor is trying to baby my PICC along put it's not going to last much longer. My home health nurse/team think it would be best for me to go the port route. My doctor is still trying to think about whats best as I have a pacer, and I had so many infections already. I am to the point of just stopping the the IV abx for the lymes..... I know that I can handle the oral with all my ulcers..... I even trying to think what would happen it I just stopped treating the lymes, as I have felt so much worse since we start the treatment. I am in late stage lyme, but I really still think what if this is somthing else also. As for the POTS, and NCS, I am still having passing out spells, I am starting to have more heart racing then I have in the past, and my b/p is still very low. I am having jont pain, and migraines, all the time. Also I am on IV saline 4 times a week. Does any one have and ideas? I was in the ER last night as the pain in my arm is so bad where my PICC is, iright now there is no blood return, so they said they need to TPA the line, but right not as red as the site is the are just waiting on the blood culters to come back. I will here on them soon! Sorry I am just worried, and not sure what to do!!!!!

My pacer was placed in 2004 and I still have a nasty scare too. Now the one thing I rember my doctor that the pacer should not move around in your chest. I would see is you could get seen as you don't want to pull on the leads in your chest. Do you have 2 leads? I how everything is ok with your pacer!

Hello All, Well I have not been around much as I am just not up to it. I am having a really hard time at fighting, and feel lately like I am losing the battle. As some of you know I have been having a hard time with my PICC. I am on number #4 this year already. The doctors, nurses, all keep saying they never seen anything like it, they are thinking now my system is just so weak that my body just can?t fight. I now have cloth dressings as I broken out, and my arm is so beaten up that was the last option, although they didn?t want to do this as I had Sepsis three times already this year. So I am now having a home health nurse come to the house three times a week, to changes the dressing. I feel like I al losing the fight. I am in so much pain, from Joint pain, and headaches, due to trying to treat the lymes, the pain patches, and pain shots seem not to even be working. As for the POTS, I feel like I am going to pass out every time I stand, my b/p is always too low, today even after the fluids, my b/p only got to 98/67, and my heart rate laying down in bed was 110?s- 120?s. (At least I am not pacing for once!) I been to the doctor?s and there is little and of them are saying anymore. They are already talking about when I get sepsis this time they want to put a port it. I am to the point is it worth it? Although two days with out fluids and I am unable to do anything and with in 3 days I would be in the hospital. As for the lymes, I am not sure if it even worth treating. I just feel worse all the time, which I know is a good thing as it means the meds are working, but, what about a quality of life. I even thought about going off the IV abx, but I have ulcers, and I can not handle the pills I take now, and before the abx tore my stomach up. I couldn't sleep tonight, and finally though I could handle getting to the computer for a few mins. Sorry for venting, I just know here you could understand. I hope you all are doing well!

Thanks for the post. I have a st. jude pacer. I am hoping it never comes up on the recall list. Also thanks for letting us know. I have not looked for recall since that last big recall about a year ago!

I sorry I am just adding in now, but I also last month just found out that I have a vit. d problem. I scored a 9 when it sould be 25 or above. My Lymes doctor wanted me to be above a 35. I am taking 4,000 units a day. So far I have not notcied much, but I am hoping over time it will. I am having the blood worked check again next month so we will see. I have also notice that there was alot of people on here that do have vit. D problems, so I am thinking it one more thing that may go along with dysautonomia too.

I havn't been around the last few weeks that much, I saw the post today! I am so gald to see you are back. I hope you keep getting better! Welcome back!

I been there I been Denied twice waiting for my appeal now. I am not sure if I will ever get it. Its odd though. I am hooked up to IV up to 8 hours a day, and use oxygen when needed, in and out of the hopsital, and yet I can work too. I wish I knew where? Keep your hand up and keep fighting. I am never giving up if I have to go all the way to thee fed. courts I will it not fair the way they handle the claims. Hope you have a better day today!

I understand I been though more of those you said, the dumbest one I got was the borderline. I hate that word. No though really I understand ut's like if a doctor can't find what's wrong with you in 5 mim. you are crasy, or depressed, as they could never just not have an anwsers to why you are sick...... sorry I could go on and on....... Hope you doggie come home soon and will be back up and playing soon!

OK, I just was tested for a hypercoagulable disorder and I got the results in the mail today. This is a few line from the letter: " Therefore there is really no evidence of hypercoagulable syndome. Interstingly, your vitamin D level was terrible."...... the letter goes on to say I need to start taking Vitamin D3 4000 units a day. Does that seem alot. It also says the Vitamin D effect the immune system, and maintaing proper cell growth, regulation of certain functions in the nervous, and bone metabolism. Has anyone else had a vitamin D problem? If so does 4000 units a day sound right for a does to take a day? Did you seem an improvment in your health after starting taking Vitamin D? Thats for any info!

I am being tested right now for a cogaltion disorder (sp?) My hands and feet are always Ice cold in fact my LLMD it having my do testing as he things I had a blood disorder as to how clod there are. In the am when I get up my figernail and most of my hole foot will be purple.

Dayna , I am so happy for you, that you trip was great, and wow that is great see dreams come ture, you got a week of being "normal" or life with out the illness. I hope things contiune to be the good for you! Take care!