AJVDK

Get a good night sleep! Glad to hear you are back from the ER!

I just wanted to say hang in there. I also want to say that some of the doctor that talk about DX and don't do the testing take as face value. I been DX with more things, some I have not had. Please contiune seeking information and whats going on. Trust your body. I know I am one to talk, but don't focus on the DX focus on what makes you feel better, and what makes you feel better. I was told a few weeks ago to look at everything in a new lite. Don't fouse on the POTS and NCS fouse on what you are feeling know and have the doctor look at that. There truth to that I foces so much on POTS, and not even letting doctor get the hole picture. ( I know for me this was the best thing I could have done as I have been able to move on and focus on the hear and now, and work at treating the systoms I have now! I wish you the best. Let us know how things go!

WOW! I am happy for you! Thanks for letting us know the great news! Amy

I am so sorry to hear about you bad day! I hope you start feeling better soon.

Just like everyone else has said, I think you should try another doctor who will work you up again. Run the test over again. Maybe the can use your old test reslut to the new and see if there been changes. Please is you are feeling this badly, keep going to doctors, if you know somthing is wrong trust yourself! I wish you the best, and hope you will be able to get to the bottom of things!

Hello All, Well today went back to the doctor and he said after reviewing my medical records, and looking up all the information on Lyme?s. I was dx with Clinical Lymes. I am still going to LLMD in the middle of August, but my doctor started me on Doxycycile today. Have any of you taken this? Are there many side effects? Then the plan is things do not improve with my POTS, they are placing a PICC line in 4 weeks and will be doing Saline fluids, as meds have failed. I now have a full treatment plan but am very scared as to how everything is going to play out. It?s all the unknowing. The good thing is we got all my medical records, and There was a time in 1998 (I don?t remember this but it was in my records) I was seen several times as I keep getting a rash on my leg. ) So if this is true my POTS, NCS, Heart Problems, and Migraines, all came after the lyme?s. My doctor told me not get my hopes up as if that when I got the lyme?s and the treatment starts to work, I still may never be the same. The goal is it to get me up and moving around the house and to be able to spend my time with my family. I was told not to get hope to high as I still will have many of the problems. (Kind of a let done, but I need to know the truth!)

Wellbutrin was like speed to me. When I frist went on it I loved it i got much done. But then I would crash hard. In fact so bad ended up in hospital. I have a friend thought that it has worked great for depression. I am not sure about using it for antixy. I would talk to you doctor about the use of wellbutrin if you get an odd systems, or talk about the use if you are worried before you take it! Happy b-day to you little one!

Pam, I thanks for your post. I been doing alot of reading, and I made the choice to go see a LLMD. I made some calls today and am able to get into Dr. Crist in MO. Plus I was able to get in on August 14. I have never got in to see specialist this soon. I am hoping that we can find out whats going on, of rule lyme's out. I was talking to the the women form the office and it seem like many people get negivtive blood work, after we talked and explain everything I have been though, see said it's good I am making the appintment. So I guess we will with and see what happens!

I was taking clonidine and had some of the same problems, so I talked to my cardio, and I changed to the patch form. It been working so much better then the pill as it stays in you system, and yet there are no dips form taking a pill two times a day plus someday I never took the pills at the same time. The pacth os a seven day patch, so I only change it once a week. It so much beter for me. I am not sure if it would help or not, but it an idea for you. Amy

Ok my first set of blood work came back negitive for Lymes, so now I am going to do the western blot test. I was down as I thought, and was hoping this would be it. But the test I had taken was done localy. Any ideas to help would be great! Amy

Melissa, I am glad to here you are home. I wish you the best, and you will be in my thoughts, and prayers. I really hope this works for you. Keep up the HOPE! We need the sunfish around here! Again, glad you are home!

I feel under the heart section due to all my rthyem problems, and have the ekg's to back it up. But the social worked I had listed everything I had. So when my deinal came it talked about each one, and how it effect you. Beleive me if you have a problem list it as the more medical prooblems you have the better you are. Just make sure you have the medical records to back it up! Hopfully that help some. I know others have been doing this, and work on SSDI more then me, I hope so over them will also post for you. One thing that helped me to get though alot of it I contact one of the Iowa senters that sent me alot of information to help me. Just an idea!

Well here in Iowa when I appileid I listed everything. Like POTS, NCS, SVT, Ulcers, Depression, Pacemaker.......list goes on. Make sure if you list it the best thing you can do is have all the medical records to back in up. I spent so much time getting all my records, but it helps alot, ( as one of the reason I got deined was the doctor did have the right wording. So now this time my Lawyer is having that doctors write letters, along with the medical records that say why I can no longer work. SSDI wants to know why...... The bad thing I did was get a lawyer, as the first time I did my best, but there where things I missed. Many lawyer will not take the case thought untill you have been deined at leaset once. And then then bad thing is my lawyer get $5000.00 or 25% ( 25% will not go over $5000.00). I wish you the best luck, with your SSDI! Amy

I take 25 mg 3 times a day. If I take any more then that my b/p drop to low! I wish I could take more as ti would help with the rthyme problems.

Emily, I right now am waitning on the blood work right now. I just got mailed a western blot test, to have my doctor take the labs and mail. ( This is not the test I had done last week) I am waiting on a Call back from Dr. Martz office he is a LLMD in Colorado Springs. His name was givine to me by the LDA. After talking to a person form there office I really beleive this is whats going on. The bad thing is everything is out of pocket for lymes doctor and test? So right now I am working on all the money part. Thanks for the info! Amy

Have you taken you B/P? Lopressor can lower your B/P. That could be making you feel loopy. Dumb question for you, are you being see at the Cleveland Clinic. ( Just a question due to timing and med?) Amy

How many of you have a "Clinical Diagnosis" vs the "Serological Diagnosis? I am waiting for my blood work to come back right now, but been ready about how many people have lyme's and the lyme's may not show up on blood work. I guess I am just hoping my blood work comes back showing lymes. It just seems to fit so well with whats going on with me. I am getting to the point that I am having a hard time walking due to my muscels are so tight and I have so much pain. So days I use my wheel chair becasue of pain, and not because of the dizzyness. Then I am like does lymes casue POTS, and NCS? Can you have both lymes and POTS? For those with Chonic Lymes how much improvement have you seen with treatment? Sorry for all the questions just uptight about blood work, and wanting to know more about Lymes! Thank you! Amy

It's sad that the mediacal community seem to be in the dark when it comes to Dysautonomia, Hopufluuy in time, more reseach, and media attention that one day many will know more about Dysautonomia. Untill then its on us. You know telling others, righting letter to congress, doing anything to make it know there is a problem, that it real. Just like the fact that so many of have to fight so hard to get SSDI as they don't have a clue to what it is. ( I was told on my denial letter , to find a job it didn't had to been down in, OK it get that but I still may pass out, my heart may still face from doing other things of for just because I am having a bad day.) So many don't beleive that in changes you quality of life. Even the frist doctor that told me I had POTS, told be I would out grow it, and it wouldn't effect me that much. Look at me know. I am stuck in my house. I find it sad that this is the way the world see Dysautonomia. But lets hope in the last year then has been more in the news, and more articals published, lets hope over time more will understand what it is like to live with Dysautonomia!!!! Sorry about going on! Amy

Good luck when you go to the doctro next week. I hope you will find the mix of drug so that you are able to have a more stable feeling. Amy

Wow! The more I also find out about Lyme I think it could be a possablity for me also. I am uptight as I get me lyme test results on monday! I am hoping it is Lymes as maybe then I can get some treatment and things will get better. I grew up camping and on the river, and then in college I was a photography major and I was always taking pictures in the woods, and lakes trying to get the perfect shot. So who knows. I don't want to get my hows up. It's been so interesrting reading though. I never new lyme's could cause so much. Dizzy- Please let us know what you find out when you go! Emily- What treatment are you going to be doing? Did you have the western blot test? Ariella- Have you had the blood test done yet? Please let us know what you find out! Talk to you all later, Amy

Patricia, Thanks for the reply. I am still wanting to know to about the PT. My understanding is he said the PT order was too much for me. He said to do leg lifts, and things I can do in bed. I was doing PT for my neck/ headaches and he pulled me out, as he thinks there is somthing else going on. He told me to push myself around the house, but that he wanted somthing else other then the PT order from Cleveland at this point to help get me up and going again. He is more upset that he refered me to cleveland. I went out got the DX of POTS, low blood volume, and rapid blood flow, and then they send you home. There follow up has been really bad it took 3 1/2 week to get the 3 months of P.T. As for the meds they still havn't got back to him. So there alot going on. Thats why my family doctor want to refer me to Grubb, as he know for getting to the bottom of whats going on. ( But I worry the follow up is going to be the same as Grubb is busier then Cleveland.) Who know's let hope I will have a better day with my doctor appoitment in tuesday! I turst my family doctor, he turly wants things to improve. I just want to know if thet are not! Talk to you later! Amy

Nina, For BCBS to pay I need a referal for out of state. ( I need them to pay, but they way it looks we is in the network so it will be 80/20 which it nice) So even thought I need to wait for the referal, its ok to get the insurance to pay! But thanks for letting me know! Amy

Thanks for the support. I feel alittle better today. I got so much need sleep last night, and am trying to stay postive! I am going to tell the doctors to go ahead to get the referal to Dr. Grubb. At least then I have it if things do not get better! Amy

OK, today I was on a mission. I wrote a 6 page letter talking about SSDI, and the fact how hard it is go get approve having POTS/ NCS. I talked about what pots/ NCS is, web site for more information, and quality of life someone has, and so one. I went on and on. I mailed copies to President Bush, to the governor of Iowa. Then I emailed all the Senators, and state representives in Iowa. I am not planing on them doing anything, but I am just so mad at the system I thought I would try to to some good, and at least let my story be know, and also talk about how hard the SSDI process is, and the amount ot time it takes when you really need the money. That we as tax payes have paid into the system, so if one day we are unable to work that what the system is for, not alot of red tape. Anyways I am tried now, I thinkI am going to take a nap! Talk to you all later! Amy

I am taking procrit and it does help. The big thing for me is we are still not seeing a large inprovement in my hemocrit (Sp) going up I am sitting right now at 36.8 I have not had an injection in 2 weeks. I was getting 10,000 units weekly. I not waiting on a lyme's test to come back, and doctor waiting on reeral, but I am going to have my next shot on tuesday ad long as all my blood work comes back ok. ( Long story) As for florinet I was not able to stay on the med due to all the water I was retaining. It work i guess alittle to well in me, and my B/p did got up in fact my normal is around 90/60- 80/50 it when up to 154/94 they took me off of it. But there are many that have had good luck with it. THe big thing is that each person reacts to meds differently. I wish you the best!