schamsjj

When my symptoms first started in March 2010 I went to a Lyme specialist and my Western Blot from Igenix came back positive. I started treating for many months and taking some off. In August I was diagnosed with pots at Mayo. They don't believe it's lyme but i really have nothing to lose. I am still currently using antibiotics. In the begining he also found I had very high levels of mycoplasma results that my regular doctors overlooked. The Mycoplasma is lower now. Some things have improved and some have gotten worse. I still have all of my pots symptoms but less of a high heart rate. Jared

Hi everyone, I was thinking of trying some allergy meds like allegra or clariten or anything else you all have tried. I have seen a lot of posts about ones that block h-1 and h-2 but i'm not sure which ones do that. I would like to try both at once. I have been taking benadryl at night to sleep sometimes just so you know. What would you suggest? Thank you, Jared

I had it done in the morning, I was kind of hoping this test would find something. but at least I ruled another thing out.

Whoops! The labs came back backwards and I posted them that way! Cortisol 12 baseline 21 30 min 26 60 min So hopefully this is normal since they doubled!

Hi everyone, I just got the results of my ACTH stimulation test and was wondering your thoughts. Results cortisol 21 ug/dl baseline 26 ug/dl after 30 min 12 ug/dl after 60 min The nurse said it looked fine, but everything I read on this states that the cortisol level should double from baseline. Do any of you have any knowledge of this?? Thank you! Jared

Thanks Rhino, Yea, I tried calling my federal loan place and the lady said there is no way unless you are never expected to get better period. I won't even waste my energy on it, it will take to much out of me. Thanks for the info, I might try to have it deffered for 3 years if interest won't accrue and see how that goes. Jared

Wow I didn't know how many people have this too! This was one of my first symptoms and was freaking me out. My legs would be burning when I was walking around, and a few days later I started getting extra veins showing. I think these are vericose veins, and I think it happened because the blood needed somewhere else to go. The start of this summer hurts my veins a lot to. I wrap my feet and legs up with medical gause that has velcro on it. It's way easier to take on and put off than those stockings.

Thanks everyone, Lizababy, I was looking into having my student loan discharged, but it says you have to be Totaly and Permanantly disabled with no expectations of getting better. I don't know if that would work out or if I should try. My doctor at Mayo would have to say sign it saying that I have no expectation of getting better. Has this worked for you or anyone else you know with pots? If there is a chance I will give it a try. Thank you! Jared

Hi Dani At least you are young and hopefully will eventually get better. I got it approved 1 month after my exam on my first try. So I think they had made some sort of a decision before the exam, but just wanted to check my mental health. I'm not sure though. Did yours start abrubtly, like after an infection of some sort? Jared

Hi dani, Thanks! I am 25 and have had it for over a year. That's good you don't have to have a mental exam lol! Hopefully your doc will be understanding, and just let him know all of your symptoms and how they can vary throughout the day. Just tell him what a whole day is like for you. I am honestly not sure at all what types of things he will test for but I hope for the best! Jared

Thank you everyone for the advice. I just wanted you all to know that I was approved and I can't believe it. I thought the process was going to be so hard and long. I wasn't even thinking of the possibility of any chance of it happening. The paper came in the mail saying I was approved but did not list exactly WHY I recieved it. Such as which of my symptoms counted towards it. But i guess they must have seen all of the different doctors I have seen in the past year and tests. The psych evaluation was the only thing they had me go to last about month ago. It was very weird and she asked really strange questions. My cognitive ablities are very slow and she gave me memorization tests. She gave me a weird look when I couldn't remember the capital of Italy. I could not believe I couldn't think of this! All in all i'm glad now because I have lots of student loans and can now at least continue making payments. I also can just focus on things that will help me get better. Thank you everyone who contributed! Jared

Thank you, these videos were VERY good.

Bump!

Hi everyone, I have had POTS for a year now and have applied for disability a while ago. Today I recieved a letter in the mail from the Social Security Disability center saying that I need further testing. They set me up with an appointment for a mental health exam on April 28th. Why would they need me to do this, I mean of course i'll say this is causing me anxiety. I don't want this test to determine my ability to obtain benefits. If any of you out there have ANY suggestions I would be very greatful! Thank you much, Jared

I just got a heart rate monitor and I noticed how much my heart rate really changes. It varies from 50-140. When I stand it always goes from 60-100 or 120. Sometimes even if I move a little or take a big breath it will go from 60 to 100 right away. Lately it has been going staying around 80 or 90 when i'm sitting up. The other day I tried taking a bike ride and it was constantly staying between 135 and 150. I go really slow and it still doesn't go down. My doctor said to keep exercising, but that just seems to be making my heart symptoms much worse. I also have been having really bad head pressure with throbbing in my ears at times. My doctor doesn't seem to care and says he doesn't know what that is. But i've been dealing with this for a year and he just says it's probably anxiety and some residual effects from some infection I had last year. What do any of you make of this? Thank you guys! PS I also have this intense pins and needles sensation all over my body for like a half hour once every few months. Jared