Jenn202

I also use it when I get into a real slump and cannot get out... Especially when I come down with a flu bug... I have a standing order for it from a Home infusion company. It is such a relief to know I have this now. I used to have to fight and beg for an IV...sit in the ER for hours on end. It makes me feel much more secure to know that it is at my disposal when I need it now. And it absolutely helps get my volume up.... Like Kitsakatsa I use Sodium chloride IV.... I need the salts in it.

Persephone - I sent you a private message... I will be speaking to Dom this week. and will ask her whatever you want. I know she was very happy with the workup , and the hospital staff...she said it was extremely helpful and she came back with a lot of answers.

Hi Persephone - My friend Dominique went to see Dr Mathius..is this who you are going to see? She spent a week there and went through a very thourough bunch of tests. She said they were really nice and knowledgeable... She has to go back now for the rest of it..I guess they do the tests first and give a diagnoses, then you go back to review the tests and discuss treatment. I will ask her more about it when I speak to her if you like. From what I know it was a positive experience for her and she got many answers.

I agree with Amy - You really need professional help... We can give support on this site but we are not qualified to deal with anxiety disorder. What you are going through is very common... and yes many people with anxiety disorder turn to alcohol or drugs to stop the feelings of anxiety which is why you need professional help. Please go today..

Hi Susan - I have a Home infusion company set up for when I need IV saline. I get it when I am sick with a cold or flu since this seems to be when I am at my worst.... It always helps. I have had some "episodes" as well without being ill when I got IV saline... For me it makes a huge difference. When I saw Dr Grubb last month he said it was common for people tp have IV saline.. It helps get your volume up when you cant do it yourself. Hope this helps

I just wanted to add that many times from overdrinking and flushing so many electrolites out of you, you can actually alter your Vassopressin Level in your pituitary.. This is the antidiretic hormone that controls your thrist mechanism and is able to tell you whether you are adequately hydrated. It could give you symptoms similar to Diabetes Insipidus. I agree a 24 hour urine sodium test is important and also to have your electolites checked regularly....

Hi Linda - I agree with Miriam... Contact a Home infusion company. All they need is an order from one of your Dr's, and they can come to the house when you need it and set you up... All you do is make a phone call. They teach you how to set up the IV yourself, and run it..... ALso you do not need a Dr in state , it can be any Dr you are seeing from what my home infusion company has said. I hope you feel better

Yes you can absolutely drink too much water... I ended up in the hospital from doing it. People with dysautonomia have to be especially careful b/c plain water flushes your system out and with it can flush your electrolites as well...then it becomes a vicious cycle of drinking to fill the void and then flushing what you need. It can be dangerous.... I have learned to only drink water with electrolite solution in it such as electromix, and take salt tablets on a regular basis... As well as watch the amount of fluid I take in. Its amazing that drinking too much can be as bad at times as drinking too little..so I think there has to be a balance, and I think we all have different needs when it comes to liquid intake.... I hope this helps some

Hi James - Anxiety disorder is a very common affliction...so dont feel alone....many many people suffer from this. I actually have had it myself, but have been able to get it under control with therapy and meds.... As well as some alternative thing such as meditation etc..... Its hard to live life when you have a constant tape playing in your head 24/7 of what if's.... Please seek counseling.... It is very important to talk about your issues and get help for them.... As well as medication.... You do not have to live the way you are...

Hi Shayden - I just wanted to add that I drink a daily protien drink .... Its made by Jay Robb.. I get it at WHole Foods Market or Wild Oats.. you can also order it online.. it is a really yummy drink you can get chocolate or vanilla, and you can buy it in either egg white protien or soy protein, whichever you prefer. It has 24 grams of protien perserving and all the animo acids... I drink it every morning with some rice milk and ice in a blender.. its like having a milk shake.. It also gives me energy.

Thanks Merrill and Emily for the hot weather tips! Have you guys tried the toeless ones? I saw them online but wasnt sure if they worked as well. I guess I will have to muddle through and wear them when needed this summer..... It really is such an amazing difference with them on.... I can enjoy so much more... I'm glad I found them

Gena - I wear mine in the house on days where I feel I need them....I have been wearing them everytime I go and about for the day..... I see such a diference when they are on, and if I find I'm going into a spell , they help tremendously. I just dont know what to do once the weather is warmer and I need to wear capris or shorts... I get VERY hot in the summer so I cant imagine wearing the hose in heat..... Any suggestions?

When I forst started becomming ill I lost a trememdous amount of weight. I was 5'5 and down to 90 lbs, my bones showed through but I was eating everything in site...I was so hungry! As I have been treating the cause of my ANS ( Lyme) and feeling better I was able to excersise again and put on muscle mass which has brought me up to 106lbs.... I feel I look much better... Now I wax and wane from never feeling full to feeling too full and not being able to eat,,,, Does anyone experience this?

Gena - I fit your "profile" exactly! I use the jobst thigh highs 20/30 compression. They stay up for me and work well. I bought the Ames Walker brand at first b/c they were much cheaper just to test them out and make sure they fit ok. But I really like the Jobst hose...they are very comfortable and I have worn them in mnay situations for a long time and feel good the whole time.

Mary - I am am sorry that your little girl is going through so much... I will keep her in my prayers... Please stay strong...we are all thinking of you both.

Hi erestine - I just recently bought a pair for a trip a month ago... I never had a clue how mich they would help until I put them on! For me there is a huge difference when I have my support hose on.... I have so much more energy and I feel the blood going back up to where it should be! I have 2 pair of Jobst hose ...these are very comfortable. I manage with the thigh highs although I know some people on this biard prefer the higher ones. I also have 2 pair of Ames Walker...they are cheaper and are fine on, but the Jobst are still more comfortable. Ameswalker.com has many different brands .

Steph - I will be sending you lots of good vibes tomorrow...!! I hope all goes well and that this will be your last surgery. I also hope that you make a quick recovery..... Take good care of yourself and rest up over the weekend

I'm so happy for you Persophone!! Your right, life is too short, and you have to grab every moment you can.... If I decline an invitation or feel I am "too Sick" to do something I was truly looking forward to, the sadness of not doing it takes over any problems that actually going would have done to me. We have to remember its not just our physical bodies, but our spirit that needs to be healed. With that comes health. I have to say no matter how bad I feel, if I decide to go, I always end up feeling better than if I stayed home wallowing. Take it easy this week, rest up and be happy that you made it!! Also dont beat yourself up if you have some "recovery" days......

JLB : I think there are pros and cons to being online and having access to so much info that is out there.... Some info is great, some just alarming..... I have learned not to take everything said about POTS or any other problem I have too seriously...the truth is that anyone could drop at any time from anything, and living life to the fullest without these fears is the best thing you can do for yourself.... Please do not think I am dismissing your concerns....I truly am not... But years ago when I first had access to the Net and was reading all the horrific things about Lyme Disease I used to have a panic attack on a daily basis about never getting better... I stopped going online and reading about all the what if's and I got better or functional.... Now I only go to supportive sites such as this. Take Care of youeself and please know you will be ok.

Hi Kathy - I just wanted to add that when you take acidophillus you need to take it at least 2 hours after you take the abx or else it is ineffective.. I usually take mine at night after I have taken all my abx for the day. Also I am nto sure if you can take pennicillans but I know I have taken Augmentin for my respiratory infections and it has helped a lot and is very tolerable to me. I hope you feel better soon, anjoy the weekend

Hi Kathy - Having Lyme Disease and being on Long term antibiotics for it, I can attest to the fact that they can cause an increase of symptoms from it. Unfortunately I think there are times when its nessesary to take abx...if you have a bacterial infection then you need abx to clear it up. Also Zithro is pretty strong and can knock a healthy person for a loop. It also does a number on your stomache and acts long term in your system ( up to a month) Are you taking acidophillus capsules to replenish the good bacteria in your gut? If not definetly get some. I am sure if its the abx causing your symtoms then once you finish the prescription you will return to "normal" I hope you feel better

CONGRATULATIONS!! What an accomplishment! I am so happy for you BTW: What ddi you get your degree in?

I cant believe you posted about Tiger Balm...!! I am having trouble with it also and was not sure why... My husband has a bad back and has been using it , I have had to kick him out at night b.c I cannot sleep, I am not sure if its the smell or another reason since it smells a lot like peppermint. ???

Hi Dayna - I hate the "you look great line" I am leaving in an hour for a hair appt, and my hairdresser never ceases to tell me I look really great and not sick at all! I agree with Ariella - Only my close relatives know the ENTIRE thing. I dont feel I owe the world an explanation for myself, nor do I feel the need to educate them on my condition. If people persist I say I had Lyme disease that caused Neurological problems and leave it at that.... If I really do not want to talk about it I say its very complex and too difficult to quicly explain. I have realized that most healthy people do not know how to react or know what to say to someone who has a chronic illness never mind one that is unknown to many...

Oh No! We missed the travelocity info... I wish we knew Thank you anyway... we booked a flight for $360 per person ( cheapest we found) and the Radisson is offering patient rates at $129 a night...which I find really steep!!