Birdlady

Well the honeymoon is over as they say. Today was just awful as far as heart rates go. Oh well at least I had a little break and felt normal for a few days!

@Mack's Mom Thanks for sharing your story! I really do appreciate it and I hope I wasn't putting you on the defense. That was not my intent! I just really find this extremely interesting. My husband was sharing a story with me about some man that was improved after a very long course of antiB's too. I agree that we can't ignore this! I'm so glad that both you and your son are feeling improvement on the antiB's. Good luck to both of you!! @Dizzy The thing is, I really don't get sick like ever. UTI's are really the only thing I get and I get maybe 1 or 2 a year at most. My husband is always amazed by this because I have so many things that are supposed to weaken my immune system (POTS, adrenal insufficiency, EBV). As a kid I got sick all the time with strep throat and then it was like a switch went off around age 10 or 11 and I rarely got sick after that. My doctor told me if I got strep throat 1 more time, that he'd take my tonsils out...I never got it again I just looked at a list of high oxalate foods and the only thing I eat on there regularly are potatoes. The last time they think I had a stone (which they couldn't see on any scans) was back in 2003. I believe it had something to do with the fact that I got food poisoning like 2-3 days prior to that from a hamburger (all of my co-workers got sick too). It was a weird chain of events which is why I didn't get help sooner. It could have just been a really nasty kidney infection. I think my immune system is working too well. I have had autoimmune problems in the past. Well I have 2 more days of antibiotics and we'll see what happens after that.

If it is an infection, then why not use one of those really powerful ones for a few weeks. I wonder if large doses of Vitamin C IV's would be of any benefit too.

The tingling sensations were so awful for me that I just had to stop it. I also felt completely out of my mind on it for some reason. I was only on 5mg and every day I couldn't wait for it finally get out of my system... Edit: Since you are taking a lot of florinef, do you get your potassium levels checked often? It will really throw those out of balance, which can cause problems of their own.

What sort of suggestions are you looking for? I was there 2 weeks ago and it was a mixed bag. You can read about my experience here. I was pretty disappointed with their attitudes. None of the doctors seemed to have any concern for me. The women performing the tilt table test were very very nice though. Just be prepared to be interrogated and asked the most ridiculous questions.

I had no scans done on the kidneys/bladder. I had a kidney stone before many many years ago now and the pain was terrible like a 10 on that pain scale LOL. That was a completely different type of pain than what I was having a few days ago though. Typically your back aches soo terrible no matter what position you sit, stand or lay in. I just had terrible burning at the end of urination that literally brought tears to my eyes (sorry if TMI). I found a CRP level from 2007 and it was non-detectable at <0.2. I also found a ESR from late 2008 which was 3 (0-20). None of those are really showing any type of inflammation in my body and that was before my adrenal insufficiency was being treated, so I was a total wreck! I know that sometimes when your body has been under attack for so long, that your immune markers actually stop showing up on lab results. You can also have a deficiency in the immunoglobins, which will cause all of your antibody results to come back low/negative. I've never had the serum quantitative immunoglobins (IgG, IgM, IgA) checked. Again today, I felt really good. Went for another walk late in the evening as it was storming most of the day here. My heart is still a little elevated (I'm certainly not cured lol), but seriously I feel pretty normal! It's absolutely unbelievable and incredible at the same time. Nothing has changed (except antibiotics) and I'm not even on my beta blocker right now! I guess I should mention this to my doctor and see if she has any ideas or suggestions. I'm still waiting on my report from Cleveland Clinic for the first round of tests I had done there. I'm getting impatient!

I've had a few kidney infections before (years ago now) so I know the warning signs. I actually had flank pain last night, but I have been doing so much more around the house and exercise that I think it really is just a muscle. And this might sound crazy but I sometimes my adrenals actually hurt too (I have adrenal insufficiency). I took more HC yesterday because I was soo active! I've retested my urine and it is completely clear now according to the test strips I have at my house. It is the exact same dipsticks they use at doctor's offices. I'm keeping a watchful eye on everything. I actually called the clinic yesterday to ask them if I should go on something stronger. She said I should see my PCP to get retested (just like you said), but since I have strips at my house I feel like it would be a waste I guess? I will definitely see if my PCP would be willing to run some of these tests on me. Looking at my past labs she ran a CMV which was negative. I get copies of all labs run because I find docs miss things A LOT. Before I was treated my neutrophils were low, eosinophils and lymphs were always high, yet I was always told "your labs are normal". Eosinophils are within range now, but I also went on a restricted diet due to some food sensitivities. My overall lymph %'s are always at the very top or above range. I guess that means something is going on and I should have things checked out. One doctor told me that all of my problems were from the EBV, but her solution was to take like 15 different herbs and basically to "get rest". I am sorry but that's just a bunch of bologna! I am all for natural supplements, but I think she was trying to get $$ out of me. I'm not going to take $300 worth of supplements. These were the latest EBV labs I had done last September. EBV Antigen D AB IGG - <0.9 (negative) EBV VCA IGM - <.90 (negative) EBV VCA IGG - 4.53 (high) EBV EBNA EGG- >5.00 (high) On the report it says this suggests a past infection. Thanks for the response. I guess even though I never get sick I should probably have all of this checked out just to make sure. Maybe I never get sick because my immune system is on overdrive.

Wow thank you Tracey for the explanation on why this could be happening!! Yep I am on macrobid, but only have a few days left on it. I'm curious to see what happens to me after I run out. I've never had any sort of infection markers run, so I really have NO idea if I have lyme or some other "hidden" virus/infection lurking in my body. I never ever get sick, so part of me thinks no? Do you have any suggestions on what I should have run? I really never went down that route before because I just don't get sick very often. Last time I was really ill with a flu was about 3 years ago... I came off my beta blocker a little over 2 weeks ago so I could have the tests run at Cleveland clinic. I had been trying to stay off of them to see what my body would do and it wasn't very pleasant at all until I started the antibiotics and I felt like a new person.

We had a small discussion about this in the thread here, but it is probably better to post in here so we don't hijack the thread further lol I think the study was rather disappointing to be honest.

I have test strips in my house and there were extremely large amounts of blood, nitrites and wbc's. I was in serious pain the night before and couldn't sleep at all since I was up peeing every 5 minutes. They didn't culture because it was just so obvious from the dipstick. I was literally peeing red blood (Sorry TMI). I am still on florinef, but I am not on DDAVP. I think that DDAVP is the med that does what you are talking about. Somedays if I took it and I didn't really need it, my bladder would feel odd like it wasn't getting enough liquids to flush through. I just think that with DDAVP, you go less so you are more likely to not flush out the bladder completely. That's just my unprofessional opinion though! I got epstein barr virus just around the same time as my POTS started. That was 10 years ago, but I don't ever remember feeling this good on an antibiotic.

I had been doing pretty awful lately. I went to Cleveland Clinic 2 weeks ago and miserably failed the tilt table test. My HR's on the tilt were nearly 150 for most of the test. Summer is usually when I just want to crawl in a ball...The heat makes all of my symptoms 1000X worse. I know a lot of you can identify with this. Well a few days ago I noticed that I was feeling different. I thought to myself that I was actually feeling better, but I didn't want to say anything or jinx it... I thought to myself that it was a little odd as I've changed absolutely nothing...except 1 thing. I got a horrible bladder infection late Sunday night. I had some left over antibiotic and took it. Saw the doc the next day and got some more and have been on it now for nearly 6 days. For some unknown reason, the antibiotic is helping my POTS. Can anyone explain this to me or has anyone else had this happen? I am sort of excited about this because today I laid in the sun for about an hour, then I rode 1.5 miles on my recumbent bike and went for a nice walk at the park. This is absolutely insane for me! I am not the type of person to have placebo effects, so I know I'm not imaging this. My standing HR's are way down right now. From 160's to about 104!! Does this point to some type of hidden infection or something? This is truly weird!!

I agree. I felt like this study was supposed to be "mind blowing", "absolutely amazing", rah-rah-rah! lol And, now that I read the little abstract, I'm not really understanding what all of the build up was for. Do you think it was seriously just fabricated by this doctor and his team? After I read the study, I looked at my echocardiogram and my heart isn't small at all. In fact, it is definitely on the higher end of normal now. I'll just keep doing what I'm doing as this study hasn't changed a thing for me...

Here's a link. Not that groundbreaking in my opinion...I guess if your POTS isn't severe, then the 9 bpm decrease would be good. I'd need about a 45 bpm decrease in my standing heart rates to no longer meet the POTS criteria. http://content.onlinejacc.org/cgi/content/...ract/55/25/2858 Am I being too harsh? What do you guys think?

I gotta ask if you've ever had your parathyroid checked. I mentioned this in the other thread but am not sure if you saw it?

If your calcium has always been within normal range you are probably safe, but without testing PTH you just don't know. That website I linked has seen a few cases where calcium was like 10.2 (which is 'normal') and the patient had hyperparathyroid. I noticed labcorp recently lowered their calcium lab ranges, so obviously they had reason to believe that a calcium of 10.2+ isn't safe. At this link, if you scroll down to the chart he created with normal blood calcium levels, you'll have a better understanding of what I'm trying to explain! http://www.parathyroid.com/diagnosis.htm I've had a few calcium levels in the 10's so I checked mine since taking vitamin d makes me feel so terrible even though I'm really deficient. My PTH was appropriately low for those calcium levels, so I'm good.

It has sucrolose in it which I personally avoid. Artificial sweeteners give me a nasty migraine and make me feel weird.

Everyone is on this vitamin D kick these days, but it is important to rule out hyperparathyroid before you start taking large doses of vitamin D. Why? Because if you have hyperparathyroid and take vitamin D you are actually interfering with your body's defense mechanism, which can be dangerous in some cases. Our bodies use vitamin D to absorb calcium. With a hyperparathyroid, your body actually LOWERS vitamin D in the body to stop absorbing calcium which it is taking from your bones. Calcium levels should never be high, ever! So if you have low vitamin D and a highish calcium level in your blood, then you should never take vitamin D before accessing your parathyroid function. This website explains it really well here. http://www.parathyroid.com/low-vitamin-d.htm

^ Couldn't have said it any better!

I don't want to single you out here, but this is where I am much different. I will NEVER accept this as my life because this is not who I am. A few years ago the hair on the left side of my head had completely fallen out and I went to a forum to get some ideas on what to do about it. They said the same thing as you, to accept the fact that your hair is gone forever. No that wasn't an option for me and I left the group not long after that. Well I started researching and eventually I found the cause of my hair loss and it's all grown back. If I had just accepted it, then I'd probably be wearing a wig now.

Heat intolerance is bad for me too, but I can be tachying away on a cold but HUMID day. The humidity is a huge factor for me. Like yesterday, it was about 65 F degrees, rainy and cloudy but since it was nearly 100% humidity I was a wreck. Today it is roughly 74 F degrees but the humidity is lower at 66% so I don't feel quite so terrible. Now if I sat in the sun I'd be miserable, so I'm smart enough not to do that. We'll see how I feel as the day goes on. I just woke up a few minutes ago... I wear short sleeved shirts year round regardless of the temperature outside. I can't risk overheating even in the winter. Some times stores over pump the heat and that's not a good situation for me. This way if that happens I can take my coat off and I don't have to worry about a long sleeved shirt keeping me from cooling down quickly. I suffer constantly from the heat because we do not have air conditioning in our house. We have a few window units, but they don't cool nearly as good as what a whole house air conditioning system would. It's not uncommon for the indoor temp to be HIGHER than the outside temp. This might sound crazy but just eating or drinking something really hot can set me off!

Checking your adrenal function is absolutely important. I just don't want people to think it's a magical cure. The yahoo groups and forums that discuss adrenal fatigue told me that I'd be better once I was put on HC/florinef, but that has not happened. My HR's are actually getting worse these days. SO...While I think it's a good thing to rule out, I don't want to put this idea out there that it's a guaranteed fix!! @TrainBoysMomRocks My saliva results were scary too! It was no wonder I never wanted to get up in the morning. lol

The answer that I despise more than anything..."I've never seen or heard that before". This response would be okay if they were ADMITTING that they didn't know, but when they say that they are actually inferring that since they've never heard or seen it, that it can't be true!! Right...because you are this all-knowing being. Give me a break. If I've never seen a red car before, it doesn't mean red cars don't exist!

Here's what you can have done. A PCP won't be able to order all of these though. These need done at 8am, fasting. If you smoke, you'll likely raise both of these levels since smoking raises cortisol. AM Cortisol ACTH CBG (cortisol binding globulin) This way you can calculate your free cortisol. ACTH stimulation test with a baseline ACTH (this will need ordered by an endo most likely) 4X saliva cortisol test (you can self-order these online, but mainstream doctors won't like these) The problem with all of these tests is that the results are open for interpretation. The lab ranges are way too large. For instance, Labcorp where I had my AM cortisol tested says that anything in between 4.3-22.4 is "Normal". I can tell you if your AM cortisol is 4.3 that is NOT normal at all. That's the problem with endocrine disorders. You need to find a doctor who doesn't just look for the "H" or the "L" next to the lab numbers. Another thing...There are a lot of medications out there that will make total cortisol levels appear to be normal. I don't have a list of those meds handy, but they are common ones like Metformin and Lipitor. Good luck...getting an addison dx is quite difficult even if you have it...

Unless you saw the actual numbers of your stim test, I would be cautious in accepting the "normal". What sticks out to me is that you said your baseline was very low and then your adrenals made a ton of cortisol at the end. That is consistent with secondary adrenal insufficiency and most endos don't understand or know how to diagnose those cases.

For me I got POTS before the illness and trauma, which doesn't make sense at all. My timeline is like this: Summer 2000--Severe Heat intolerance during summer band camp fall 2000---diagnosed with EBV fall 2000---became anorexic To this day I cannot figure this out at all..WHY did it happen in THAT order. At least I could make sense of it if it happened after I stopped eating or after I got EBV. Sigh!