derekliz

you know, I truly am glad that he is better.....I am, but, I wish he would use his public status to bring more awareness to his illness. I saw Dr. Oz in the beginnning of the segment and wish that they ABC would have followed up with a segment on Greg's orthostatic intolerance/dysautonomia. I know that he has set up a fund but don'tt know exactly has come out of that

liz

Glad to hear the wonderful news.......gives us all some hope

I had reactived epstein barr and did lots of research as the dr said antivirals would not work. I take olive leaf extract as well as red marine algae to keep the virus suppressed and it has worked. My levels went down to undetectable. The two meds are antivirals and help with the immune system but I know one of them can lower BP so read about it.

liz

Relax86.....it makes no sense to me either but this whole illness is a mystery....I am sure we can all agree on that. I feel so much better when my standing HR is below 90 especially when it is 60 when lying down. Hoping that going off the omeprazole (Prilosec) will get me back on track. Just took a reading and my hr was 75 standing....feeling better I hate it when dr's say that it cannot be a side effect even though it is listed as one. Luckily my POTS specialist does not discount my symptoms and feels that it can definately be contributing to the tachycardia

liz

well, when I started the Ivabradine, my standing HR went to the mid 70's to low 80's and I felt so much better. When in the 90's-100's, I feel horrible

Yes, it is weird how we are all so different!

I just read that the Omeprazole (generic for Prilosec) can cause tachycardia.....just started it 1 month ago. A few months ago I had to stop prevacid because it was raising my GGT (liver enzymes).

So I am going to stop the Omeprazole and see what happens.....it's all trial and error and I HATE that

liz

Well, I started Ivabradine on 5/27/12 5mg twice a day and was doing wonderful......no fatigue, no side effects but as of the last week, back to the way I was feeling before. HR has been up, not as high as before but still tachy most of the time while standing. Lying, I am ok, Typically about 60-65 but standing in the 90's to low 100's. Feeling fatigued and palpitations. Working with the nurse at my specialists office and she has emailed the MD as he was out of the office yesterday.

Anyone who is or was on Ivabradine have the same problem? Beta Blockers just made me so fatigued I would hate to go back on them and they were not helping as much as I would have thought. My BP was on the high end several times this past week and HR was anbout 75....I feel like a mess right now. So disappointed...thought I finally found something that was working perfectly

liz

Diamondcut...............I hate it that Ivabradine gave you that reaction! Are you 100% sure it was the medication? The BB's gave me such horrible fatigue and I still had tachycardia

liz

I started Ivabradine (Not FDA approved yet) on May 27th and it is working wonders!

Katybug and Relax86....your comment made me laugh but it reality....we just have to hope and pray we never have a heart attack or stroke!

I use it as well and love it

I was on Metoprolol Succinate 12.5 at bedtime and 25mg in the am. Made me very fatigued and my HR would still fluctuate quite a bit but manly stayed in the mid 90's while standing

liz

hopefully your doctor will try it. My doctor proposed that I try it...I had no idea it was eben out there. Good Luck!

gofl1......so far so good. I do seem tired but I am not sure that it is related to the medication. My number have been great...just have to get myself back on some kind of exercise routine...which I HATE!

Are you in the U.S. as well?

liz

@Rich...still working

@yogini...not approved in the US had to order it from Canada

I had an endometrial ablation done last month under anesthesia and my dr just conta ted my gyn and told him i needed 1 bag of lactated ringers before the procedure , 1 -2 liters during 1 after. Just plenty of fluids and electrolytes and i did great with the anesthesia. No fluctuations with bp or hr. Good luck! I have been wanting an augmentation too but am nervous because of the POTS...will inquire 1 day

Liz

That is standing HR....will check my lying HR later...been feeling too good to lie down . Keeping a log of all my #'s

Liz

Thanks! I am not sure how long it takes to start working but my hr has stayed in the 80's all day even after being in the heat and pool all day! I am going to keep my hopes up. Yogini, I am in the US (Atlanta). Medication was prescribed by my POTS md

Liz

I was taking 25mg Metoprolol Succinate in the am and 12.5 mg at nite. For the last 2 weeks, I lowered the dose to 12.5mg in a.m and 12.5 at bedtime.

My md said that I do not have to wean off the Metoprolol and just switch to the Ivabradine 5mg twice a day. Took my first dose this morning and while I am nervous, I am also hoping and praying that this medication will work.

Will post updates!

liz

Berberine was mentioned on Dr. Oz for weight loss but I came across this http://www.raysahelian.com/berberine.html and some other info which I don't quite understand.....maybe someone can explain

thx!

Liz

LindaJoy. I tried the supplements figuring I had nothing to lose. Maybe the virus ran it's course.or maybe the supplements worked.

I went to my local nutrition store and there is a lady there who knows kineseology (sp). She said that is what I needed so I bought them and came home and read about it.

The infectious disease md would not give me any antivirals. The dosage i take is below my signature. The results were from not the regular EBV panel but a Quantatative EBV DNA test which my dr ordered because she said sometimes the levels are elevated with chronic fatigue. Hope that helps!

Liz

I had reactivated EBV which was diagnosed with and EBV DNA test. I started olive leaf extract (pill form) and red marine algae and several months later tests came back negative. No side effects for me with the supplements.

Good luck!

Liz

I actually had anesthesia yesterday for an endometrial ablation and so far no problems.

They gave me 1 liter of lactated ringers before the procedure. Started another liter before and during then gave me 2 liters afterwords. Dr. said my BP.and HR were.completely normal before, during and after. No problems for me but then again I do not have a.severe case of POTs, very functional and no passing out. Just tachy and fatigue

Good luck!

Liz

thanks guys! I will read the related links and am going to forward my labs to my POTS Md. These labs were run by my GYN

My dr ran some labs for my pre-op and my Anion came back low at 5 range is 7-15....what is anion? Never have seen this on any of my labs

thanks

liz