Jenn202

Hi Amy - I'm with Gena - If you do decide that you want to give lessening the sugars a try, I'll do it too.... I have been eating lots of bad things lately and need a kick to get me started up again.. let me know

Hi Amy - When your body has a problem with candida overload it will crave sugary foods like crazy b/c Its the only way candida can survive in the body and florish. It can also mimic many POTS symptoms such as fatigue, irritability and dizzyness which is why it makes it so important to make sure if you do have a problem to get it ubder control to your best extent. Candida/yeast thrive on all sugars, even artificial, fruit sugars, yeast containing products such as condiments, white products, or any processed foods. Eliminating these things can help get it under control. I know it doesnt sound easy and At first you can have strong sugar cravings b/c your body goes through a period of Die off of toxins...but after a week or so it gets better. But the reward for me has been very worth it. I have been on this diet on and off for about 8 years..whenever I stray from it all my symptoms get worse... Although there are times in the last 8 years I need a break to enjoy some foods ....Lately I have been "guilty" of not eating like I should. I also take a good acidophillus supplement to replace good bacteria in the gut. I also take diflucan occasionally to help clear my system. There are also lots of natural antifungals as well such as grapefruit seed extract. I hope some of this info can help. I am sure ohers will have some good advise as well. Take Care

Hi Tearose! I am SO happy you are ok....What an ordeal! Typical Dr's... Sometimes I wonder if they are even listening to us when we speak..... But Thank God it all went for the best ...... I'm keeping you in my thoughts... get lots of rest and take good care of yourself

Thank you Merrill and EMily! I ended up ordering a pair from Ames Walker.... I thought I would go with the less expensive for now until I can talk to my Dr and see if he can write out a prescription. Emily I am glad you like I Ames Walker. I will let you know how my first experience with wearing hose goes!! LOL

Hi Radha! Have you ever looked into online education? I know that there are many types out there...and you dont have to get your whole degree...you can just take some classes or earn a certificate. I know there are several that do not have semester hours and are self paced which means you can take your time and do it when you feel up to it. Take Care

Hi julie - I know exactly where your lump is ..a little above where the indent to your windpipe is...... ANd every time you swallow you feel it and it seems like you cant breath although you are getting air... Its a weird sensation, like a pressure, and mine would get sore too...I have had it for years.... It was one of my original symptoms.... I was later diagnosed with Lyme disease, and now most recently the autonomic dysfunction. I have to say after the zovirax it has gone away..... I hope your Dr can help you find answers..good luck and feel better!

Julia - Have you been tested for active HHV6 Virus? This is the herpes ( chicken pox virus) most of ther population has this virus but it usually lays dormant in most people after exposure, and only comes out as a cankor or cold dore once in a while during a cold or stress, and for some not at all. If your system is compromised , then it can remain active in cycles... I have been suffering with cankor sores, swollen glands, lump in the throat for years , and with it I get feverish, and sick feeling. My Lyme Dr tested me and I came back positive for active infection..... He said that this virus when flared causes not only cankor sores in your mouth , but in your throat even in your stomach lining etc.... And in turn your glands swell and you feel sick. Thus the lump feeling in your throat etc..... He put me on Zovirax, and since then my flares have been much much less....like right now I have a virus and I only had a small flare. Just a thought. Feel Better!

I was one of the people that did not do well on florinef...but I also know some people that take it and it has helped tremendously. I think unless you try it you wont know which catagory you fit into.... Could you start with a very small dose? I started with 1/4 tablet every other day......

Hi Danelle - I always have trouble reaching good levels of Potassium.... I only drink electrolite drinks full of potassium. potassium supplements, and eat potassium rish foods like banannas, and even with all that I just barely have a "normal" potassium level..... I have muscle cramping on and off and when I do I have to load up even more on it as well as sodium. I think electrolite imbalance is fairly typical with autonomic dysfunction. I just posted about Low Sodium.... I am sure others will also share there experience.

Hi Persephone - I am not from the UK, but my friend is. She just spent a week in the hospital under Dr Mathias's care....she said it was well worth it...he did extensive testing, and she came back with some answers as to why certain things were happening... She said he was very thourough, knowledgeable and kind. I hope that helps some. If you like I can ask her some more questions about him for you. Let me know.

Thank you Merrill! Yes I just saw the Ames walker ones..they are one of the lowest price.....I wonder if I should go for the cheap ones to see how I do with them? I am 5'5 about 107lbs....slender build....small bone structure.....I'm not sure if that helps but I do have trouble with sizes .....and I never wear hose of any kind so this is foreign territory! Thank you so much for all your help

Miriam - Do you mean to make sure my sodium is below 177? Having your kidneys shut down is very scary.... I am nervous this could happen... WHat shuld I look for? Sorry for so many questions today... I appreciate everyone's time in helping me!

Thank you everyone : Miriam : I looked on QVC but did not see support hose...did you remember the name if them? Also Is 20/30 the norm to wear?? It seems so confusing when I get on the sites LOL

hi Miriam - Yes I have at home IV..I go through an IV infusion company...its so nice to have them b/c I need to fluids when I get a bug, or my slats go too low....So much better than the ER or Hospital stay! I had a nephrologist last time I was in the hospital tell me I was harming myself by gettng so many IV's and that I didnt need any of this...I just had to stop drinking and stop taking so much salt ...!!!!!! My husband almost punched him.... The sheer ignorance of these Dr's ! Anyway, thank you for the info

Merrill - I am going to check these out! Do you have to be fitted for them? I hate anything around my waist either.... I hate hose of any type to begin with so I would imagine I could only deal with a thigh high at the most...... Are there different sizes, tyoes of compression that I need to know about? I am so glad you get so much relief from them! Thank you so much for sharing and for the tip about insurance

Thank you again Katherine! My DR wanted to try me on Zoloft but I was nervous to take it b/c I had a horrible experience years ago with Prozac.... I kept passing out on it and was bedridden..so SSRI's are a bad memory for me, but maybe they might work differently now. It could of been back then I was not properly diagnosed..I had undiagnised/untreated Lyme Disease at that time also.... Thanks for sharing what helped you. I;m so glad to hear that you are functional now even though you are weaned off of many of your meds...thats wonderful to hear and gives me some hope!

I have seen many online but there seem to be tons to choose from. Which is the brand/type that works best for all of you? Are they uncomfortable? Hot? Can you get them without having to wear a full stocking? Thanks!!

Good Morning Beth, Tearose, Katherine , and Radha.... Thanks for your input. It seems I have not tried many of the things you guys have mentioned..... I know the florinef was completely intolerable..I was on it for almost 4 weeks and each time I took it the whole room spun for hours on end....until the drug got out of my system..it never got better..this was with 1/4 of a pill...... Katherine would you mind telling me what SSRI helped you the most with sodium retention? I excerise daily and have for years... It has helped me so much.....I have never lost muscle tone, and I think it has helped me get through the rough times so much easier.....Muscle tone is so important to maintain. I am so glad that you have found walking so beneficial! I know when I get done with my resistence training and stretching I feel improved as far as circulation, strength and overall sense of well being. I hope Mayo clinic or Dr Grubb will be able to direct me to some of these meds you guys have brought up. Radha - IV lines are always at risk for infection, but so is everything that is invasive to a certain extent. I have had more Iv lines in me than I can count and have never had one problem..... The people who are at risk for infection are the ones who do not take care of thier lines....... But its really not a probelm at all Tearose - I take lost of potassium and MAgnesium every day ...I add it to everything I drink, plus take supplements.... I guess my body has a hard time retaining it...espiecially when I have the episodes where I urinate large quanitites.... I feel me best when I have a little water bloating in me. GO figure! Thank you guys for all your help... ! I am defiently armed with new knowledge for my Dr visits!!

Hello - I drink 1 or 2 protein shakes a day....they really help. As well as the excersise...not overdoing it though... I have a total Gym and I have been doing resistence training for 8 years...it has kept me tone and strong even when I was at my worst..I also have a mini trampoline.... I use it a few minutes here and there in a day.... its supposedly great at stimulating your Lymph system and gettng things moving. I HOpe you find a combo of things that will boost you a bit!

Hi Danelle - I know how scary it is to not feel well, and then to not have anybody there when you are ill.... I agree with what the others said.... The ER is never a place for us, unless it is a dire emergeny...remember you are going to go down there sit or lay on a stretcher for hours on end until you see a Dr that then will not have ever heard of POTS and think you have anxiety....also you are exposing yourself to tons of germs in there...... Thats what I always try and tell myself when I am feeling really ill and contemplating going back to the ER...I just relive my past ER experiences Hang in there... try to distract yourself.... getting some fresh air is a great idea..even if its raining today go out anyway.... its fresh oxegen and it can do wonders..... Can you rent a good movie ? It will pass.... I hope it passes really soon.

Hi Katherine - Just saw your post. ITs so strange that I have high BP with the low salt...... I hope it is not a permanent problem too... Right now I take lots of salt and electrolite drinks...I take a low dose xanax that is my lifesaver every day....and thats about it. Although I did just post my ANS Dr wanted me to try Inderal... Did your low sodium just get better? WHere there any meds that helped? Thank you

Hi Gena and Miriam - Actually my ANS Dr wanted to put me on inderal. I didnt know it had a different effect than normal beta blockers... I react so sensitive to meds that I asked to be on Lopressor b/c I had taken that years ago, and my Dr said it was comprable to Inderal? Anyway, I havent tried it yet..I wonder if I should try the inderal? Is there any article that explains this drug and how it us used for dysautonomia? Thanks so much!! Gena - Yes I had an extensive kidney work up when I was hospitalized last year....Thank God my kidneys do the job needed...... I would definetly see a Nephrologist if you have not already to rule in or out that part. And yes I have days of excessive urination...large quanitites at a time...and then some days where I do not urinate more than a "normal" person. Its so crazy! I think I have stopped trying to figure it out every day, but I feel like I am some science project sometimes! LOL

Thanks guys Yes I have tried florinef but cannot tolerate it.....and I run a high BP many times, so Licorice root is not the best candidate..... I wish there was some more I could do ...I hate to have to rely on IV forvever....

hi Guys - I have a new question this week. I was wondering how many of you have trouble keeping your sodium levels up? I have chronic low sodium...and my body is always in a balancing act trying to keep me regulated..... I have to take at least 8 gram salt tabs a day plus heavily salt food, and even then sometimes it will not work... I can feel my sodium dropping bc I get very pale, weak, shaky etc...usually chicken broth and HEAVY salt will reverse some of this. I now have a respiratory virus and feel horrible....having trouble with the hydration and cannot keep salts in check.... I usually need some bags of IV fluid when I get sick b/c my body just cannot get properly evened out itself... I'm just wondering if I am the only one who gets like this, or gets it to this extent... I know many of you have said you have the flu.... Are you able to hydrate on your own....? Thank again!!

Hi Dayna - I am on Loestrin which is one of the lowest dose estrogen pills on the market. I have been on it 8 years, and I love it. It has really helped me with my Period and the flares that come with it..... In the beginning I felt sick on it, fatigues, naseua, and just general not feeling well...it took me 3 - 5 months to really adjust...and even longer before my body was totally used to it, but for me it proved to be so worth it... I have shorter periods, I can predict exactly when I will have it, and when to expect a flare... And my flares are lessened during my period. I dont want to tell you to ride it out of you are so ill on it...I know we are all different. Definetely keep your dr informed. Maybe you can try it for 2 months and if NO improvement than maybe its just not the thing for you. Good Luck