AJVDK

I just wanted to say Hello and Welcome! I am gald you found us all. I think you will find this is a great place to find support, and friendships with others that are just like you and knwo whats it like to live with the illnes. Welcome

Donna, Glad to hear from you. I hope things start improving for you soon! Question for you, I have problems with low b/p too, one thing that has helped me for the pain, and b/p was going to a pain patch as its more steady, and no big drops in b/p like when you take pills you have peeks all the time. JUst an idea, it was a trail and error thing with my doctors in me, plus I hate feeling "high" so this is more even it releives the pain, but I done fill high, plus you only have to change it every three days! Look forward to hearing more from you soon! Take care!

Melissa, My first PICC I ended up getting sepsis was in the hospital 7 days in Jan. They said I had an infection in my body that spead to my PICC, so that why that one got removed. No this one I will get the finall results teusday. I am wanting to see what the reports will say. I am Hoping this being #3 "will work line a charm"... but they are not holding there breath. I may need to talk to you about dressing covers, I had gone though many kinds all ready. Poohbear, I have always had a power PICC with 2 lumen, and I have a stat lock. I also agree that you should olny use a picc/port.... as a loas option. Between the fliuds for the POTS to keep me going, and my abx for the lymes it keeps me going. Plus they can no longer get blood from me, it fact this new line didn't even go in the easy, and mines a cut done. Pooh did the port work better for you? I am very worried about having to have a port, as I already having the problem with infection, and having my pacemaker, but my doctor all fill the benfits out way the risk as it comes donw to my quality of life. Thank you all for the support. I am hoping this week will be better!

Thanks! I enjoyed reading this!

I am still looking for the right med. Right now I am getting shots of nubain, and vistaril. Sometimes it works and sometimes it doesn't. Topmax put me into the er, my heart was racing way to fast. I hope you find the right med. I know how fustrating it is not to be able to find a med that works! Wishing more pain free days your way.

Hey All, I thought I would drop a line and say hello! Give you all an update how things are going with the Lyme/pots treatment. Well this week started off really bad! On Monday my arm was really red all around my PICC line. So I called my doctor office and they wanted to see me. So I went it and they said it was a reaction to the tape holing the PICC to my arm, and that I needed to have my home health nurse come out today and redress my arm. So I called and she came out. She agrees about my arm. When she when to draw back blood on my line there was no blood return, so I needed to go to the hospital to have TPA put in the line. (No I am getting worried as this is the 2nd time already in 14 days that I have had to have TPA.) So Tuesday is I when to the hospital, but ?? I ended up having to have the PICC remove as it had yellow/brown color stuff coming out of where the PICC is. So they pulled the PICC, and placed a new one so that I can still receive my meds. They are now talking that if this PICC goes bad too, that they are going to place a port instead. I am not sure what I am going to do. But they all agree I am still going to need the fluid and Abx. As for the Lymes treatment I am doing IV abx every 12 hours. I started a pain patch to help with all the joint pain, it is helping some. The big problem not is that I am getting really dizzy again, and the POTS stuff is getting worse. So it like you treat the one and the other gets worse. I am hoping as time goes on things will get better. So that was my week, I am hoping next week will get better! Thanks for listing!

Hello! I wanted to say Welcome! I am gald you found us. After reading your post the one thing I would like to say is if you didn't like the doctor, and felt he didn't listen to your problems and needs.... please look into finding another doctor. I have gone thought a few doctors to find one that really is going to listen to me and help me. Again Welcome to the forum you will meet alot of great people here!

Happy B-day Roselover! Hope you have a great day!

For me the tachy was more of a bother, then anything, unless it got over 170-180, then I would feel chest pain if it when on for a while. For be the bad was the Brady. I couldn't breath, and it felt like someone was sitting on my chest. I passed out while driving back in 2004 due to Brady, I no longer have to worry about it as I am not paced ( or should say my rate never goes below 70) so for that I am happy. I still get tachy for time to time but I can deak with that. If it is causing you pain, breathing problems, or even just scares you, please have a doctor take a look. Also if its the meds, is there anything they can do to stop you from crashing so bad? PLease let us know after you talk to the doctor! Hang in there!

Hello, I been on Procirt since May, and the only side effect I had was headaches the first few times, But I still to this day question if it was the procrit or somthing else. The doctor side it was one of the side effects and dropped it a few months later I was dx with mirgains so that why I still am not sure it was the med. The only problem I had was learning to give myself the shot. I give myself a shot now every friday. (I was paying a $20.00 co-pay for going to the office to have a nurse give me the shot so I thought I could save $80.00 a month by giving meself the injection. Now it nothing at all. Do you now how much you are starting at? The best thing about this drug for me is it gave me back color in my face, I have always been white as gost, and I now have some color. ( I finally am getting 36-40 for a hematocrit! Yah!) I hope you are able to see improvment with the drug also. Also I am sure they will talk to you about it but it took agood 4-6 weeks before I really begain to see the changes. Good Luck with Procrit, and I am glad your insuance is allowing you to get it!

Jacquie, Sorry to hear your pain in you arm is not getting any better. I feel so bad for you. Sometimes ER are the worse place to end up when you having somthing off as they don't know how to treat you, so they blame the meds, blame you, to saying theres nothing wrong...... Are you still going to follow up with your doctot in the am? If you do plaes let us know how it goes. Also how long have you been on the midodrine? The only side effect I ever had was I got a high b/p eneded up in the ER, and I had goose bumps... but everone if different. I would like to see what you reg. doctor has to say! Try to see some rest, and take care of yourself. ((((((HUG)))))) Hope you feel better soon! Amy

Hello, I wanted to say I hope you have a great time. I was there in the sping of 2005. What I can say is drink plenty of water, and take lot or breaks, and rest when you can so you don't over do it, as its better to be down a hour or tow then make yourself sick for a few days of the trip. A wheel chair would be a great idea, plus you can attch all you bags to it! Have a great trip, When you get back you will have to tell us all about it!

Sorry to hear about you side effects to the IVIG. I never had IVIG's, but I can understand your feelings as I am there with my IV abx treatments. Have you talked to the doctor? The one thing I have learned with all mine is you have to look at all the pro and cons, and what your body can handle, and make a dision what is best you you and your body! I am send you a ((((((Hug))))))) and hoping you start feeling better soon!

Good luck with all the interviews this week. I hope one of these will work out for you! Keep us posted!

Right now I am not using mine life I should. But really I been so sick I am just stuck in the house. I am hoping this spring I can get out more. Last year was the frist year in a few years that I was able to get out and camp again, go on nature trails the hole deal. I have a power chair, and a manual wheel chair. It gave me more of a normal life, even when I am not doing well. If I feel good enough to walk though, and no racing heart rate, and my b/p is not to low, and I feel up to it I do try to walk.

Lina, My temp is always low between 95.6-96.6. The only time it gows up at all is if I am really sick. I am not sure if this is a POTS thing or not, but it will be interrestiong to see what others say!

Congrats! I am so happy for you! Thanks for letting us know about your great day! Looking forward to keep hearing you succeeding in the future. It's so nice to hear good news! WAY TO GO! Amy

Pat, They best thing that has helped my is Procrit. It took over 3 month of getting the injection weekly. But my HCT is now finally 36-40 now it stays around there, which for me is great. Also the compression stocking 20-30 grade helped alot. Also for about 6 months timed midodrine worked great, (then for some reason my b/p started going to high so I had to stop, but for the 6 months it worked great.) Hope this helps! Take care! Amy

Emily and Pam, I am so gald to have you guys on the broad. I feel so dumb when It comes to Lymes. What is the plaquenil used for? How you you all keep going and stay positive being in pain so much. My doctor keeps me with pain pill to get thought the pain, but is there anything better? Is there anything you can do to keep the pain down? I feel bad always asking so much, but I am still so new to all this. Emily and Pam hold long have you been treating the lymes? are you see any improvment with the POTS? You both a are great! Amy

Dizzy, I just wanted to say I agree with Emily. I found out last month that I had Lyme. The LLMD beleive I have had in for about 9-10 years. He thinks from all my medical records, and when I got sick that I got it in 97. THis whole time no one ever thought lymes. It was on this board that someone said somthing about it this last summer and I went to my PCP. That test came back negiative also. By my doctor thought it fit and tried my on doxy. Then if Feb I finally got in to the LLMD were I found out I had chronic Lyme. Emily is right many of the doctor will not take insuance so you can go to about anyone you want. I was able to find a doctor who took me without a referal. I am gald I went as I finally have some answers. I hope you get the PCP to get you the referal! Good Luck!

tearose, Thanks for the support. I had my hubby get a lottery ticket, my lucks got to turn around sometime!

Hey All, It?s been one really bad week. It started with a clot in my PICC line, (after 2 rounds of TPA, the line opened up), Then after leaving the infusion center, I was off to get a shot for my migraine at my doctors office. By this time I got there, they had already heard about all the problems with the clot as they where called for both orders of the TPA. The one nurse says to me ?you know if you didn?t have bad luck, you wouldn?t have luck at all? the truth is I feel that way. Since I got the sepsis last month, from there on, nothings been going right. I know that an infection like that takes a toll on your body, but I just don?t feel right. Then with starting the abx for the Lymes, I am just not sure if it was too much. At least the LLMD finally called and, lowered the does on the abx on Wednesday. Thursday I started getting a really bad pain on my left lower side, so I made an appointment with my doctor on Friday. Only the office was closed due to all the snow we got here in Iowa. So they called me Friday am to say they where closed, and called in more pain meds for me to help me get thought the weekend with this new side pain, and the headaches. I have an appointment on Monday, so hopefully I can get some answers then. I really want them to look into the fact that treating the Lymes is making the POTS worse, and look at the whole picture, and try to find a medium with the POTS/ Lyme systems. Then to top things off my husband backed his truck up into a pole. So now we are waiting to have the truck fixed. Hopefully it will not take long, but with all the ice, and snow all the body shops are full. I am hoping things will start getting better! Thanks for letting me vent.

Dizzy, I wish I knew the answers to that. It fact on Wed. they had to lower my amount of abx, as I was getting to sick from them also. So now I am only at 1/2 they does they want. I have notice that I have chest pain, joint pain, heachaches, dizzy the hole deal. The question is is it Lymes, or POTS or both. Due you think for you its more the Lymes or the POTS? IT's odd how the POTS systoms get worse on abx. Who knows! I am send you (((((((HUGS)))))))) hope you are feeling better soon! Hang in there!