RockiesGirl

Sending you prayers, hugs and support!! We appreciate all of the posts and info from you as well. Glad you are going to the Doc...Keep us in the loop and keep a stiff upper lip ;o)

Did you also receive your IGG, IGM & IGA results? if so, where are you both at?

Just reviewing my blood history when I saw this post. My C Reactive Protein is Low at <0.05. Not sure why if yours is high and mine is low....we are both Dysautonomic? Yes this will be an interesting thread.

Good Day to all; I am currently working on the Dinet Doctor list for the US. If you have a good Doc that you have been seeing for POTS or Dysautonomia could you please PM me? Please include location, phone and other relevant information. I will be contacting their office to confirm info., get some more info, see if they are accepting new patients and what their specialty is etc. and last but not least see if they would like to be posted on our list. Thanks in advance for your input!! Hope today is a Good day

Thanks for posting

Rama- Before all of your symptoms did you ever dive/scuba dive? I didn't know I had POTS, went diving and it really Exacerbated my symptoms. As for flying, they haven't cleared me to fly yet.

Has anyone else experienced a splitting headache that will not go away after TTT testing. For some reason this time my B/P went really high and they lowered the table at 144/132. IT was as awful an experience as the last time but I have this persistant headache. Anyone else?

This is A Happy Post Thanks for letting us know

I don't know that I had an infection, but lots and lots of the Big D off and on for months. My Doc said that rather than testing and waiting for results etc. let's just try this. She did order the test anyway, but there were no significant results and the Meds. seemed to help, regardless. Not sure why. Coconut oil sounds like a good idea....I have found Coconut anything to be helpful. Coconut Water really really helps with dehydration, has less fat etc. than Gatorade and is more natural. It is a a little more exprensive but it helps me right way

Has anyone else tried the antibiotic XIFAXAN (Rifaximin)? I noticed that a lot of my GI symptoms/gas went away after this Med. It was very hard for me to take, but I managed to get thru half the prescription before I had to stop. It really seemed to help.... although it was super expensive. Thank God for my Insurance!! Just a suggestion

Just trying to offer some words of encouragement Hope everything goes well, you get some answers and 'find out which parts are malfunctioning' I PMed you as well. Take care!!!!

Very Interesting Indeed! You know it is going to take A LOT of evidence to turn/prove something that they have thought for a number of years. Kinda like us.... "Do you think you might be depressed?" "Have you tried to calm down during these episodes?" Etc. Thanks for Posting!!!

I PMed you about this. Hope it helps!!

I wish I could offer some advise But know that at least we are 'hearing' you and noticing. Keep searching for an answer & know you have support ;o)

Hello Lette from Ireland Glad you have found us but sad it is under unfortunate circumstances. Unfortunately though, I don't think anyone would find us unless they were going through the same syptoms etc. I am working on the DOC list for website. Would you be willing to consult about the Docs you've had success with in Ireland? I live in Colorado...used to love to hike, ski and be in nature. Trying to get back there but the body isn't too keen on the process I was just diagnosed in January finally. How are your Meds working for you? I have never been to Ireland. Have you traveled to CO? Just wanted to drop a Hello to you!! Take care, Michelle G

Glad you found us Sorry to hear that you have been through so much. I too live in CO and am going to see what has been told to me as the only Automomic Specialist in CO. If you want some info., I would be happy to supply. But please know that my appt. is in 9 days after 3 months of waiting ;o) so I have no opinions yet.

I started noticing hair loss upon every 'stay' in the hospital....I think it was stress. Again, there was more hair loss after starting Toprol XL but I was soon switched to Bystolic that seems to be reacting better with my body and not as much hair loss is evident. I recently started on a regiment of Hair Essentials for Hair Growth. I only take 2 tabs a day (the recommended is 3), but my body handles 2 better and my hair seems to be getting better If you would like more info. let me know. I'm sorry this is happening to you as well. My hair has always been something I was proud of....it is so difficult when it is lost. Hopefully, we are on the road to getting it back

I am usually fine in the morning...a little groggy and it takes a little bit to me started. That being said I sometimes wake in the night covered in sweat and difficulty breathing. The symtoms You are desribing usually start for me between 3-4.....heart racing, actually hurts, freezing cold, sometimes so tired I can't function, everything is foggy including my vision sometimes. As the day wears on they progress & either I take a nap, try to push through it or it remains like this until I take my Meds and go to bed. But this doesn't happen religiously there are those rare days, I feel ok too.

I was just wondering what time of day each individuals symptoms usually appear? I personally have noticed a lot of posts that mornings are bad for a lot of people. I am bad after 3-4ish usually. Just trying to gauge.... Hope everyone is enjoying a little of spring

Great Ideas Syd!!! Now if we could ALL put our heads together?? Welcome and I for one appreciated the Post!!

I already sent an email and hoping to hear back. I am up for volunteering my time as well. Probably not the President position, but maybe if we could spread the work load around we might be able to keep things afloat. Also, I have no idea if the $$ being dontaed are actually getting to Dinet. I donated $ a few weeks back and confirmed it was taken out of my account, but never heard anything from the site?? I notice a lot of people have 'Supporter' in their profile information??? I purposely did not donate as much as I would have if I knew for sure the $ were going to 'our' cause. I think with the amount of wonderful, intelligent, helpful & insightful people on the site....we can keep it up and running!!!!! Where there is a will, there is a way.

Would it be possible to also add a thread of where these facilities/hospitals are located?? ie which Mayo Clinic etc. Much appreciated!!!

Yeah... long periods of bed rest....!!!

I did not receive any paperwork except on the Diagnosis sheet when I left the hospital it said "low immunoglobulin levels" Follow up with your Primary Care Physician and monitor. I have been trying to get my records but it is like trying to move a mountain. If you don't mind me asking?? Are you satisfied/impressed/would recommed the Mayo Clinic in AZ? I am in CO and there do not seem to be very many docs out here that deal with this. As I said before, I go to a new Doc in May but it doesn't sound like they have these sub-specialists. Don't get me wrong, I am still going to pursue and ask... But again, THANKS SO very much for your posts!!!

Thanks so very much for all of your replies. Sorry it has taken me a bit to get back with you. I didn't toggle the topic correctly ;o) Anyway, when I was in the hospital this past January the doctor said my immunoglobin levels were very low and he was the most concerned about this aspect. I told this to my cardiologist but he did not seem concerned. Maybe I need to see someone else?? Any more insight you might be able to share would be very helpful PLEASE!!! I am going to another Heart and Neurovascular center next month and would like to be armed with as much information as possible. If I do not see results from this it is off to the Mayo in Scottsdale. Thanks again everyone for your Posts They are very much appreciated!!!