Question On Mayo And Vanderbilt

[kayjay]

I do use probiotics. I've got to go get some more today, as I'm out. What is the brand you like?Issie

Is it ok to post here? I'm not sure so I'm going to send you a pm. Ok?

[corina]

Kayjay, you can mention the brand here, just not advertise!

[kayjay]

Kayjay, you can mention the brand here, just not advertise!

Thanks corina-

The best brand I have used so far was one that I purchased from Whole Foods. It's made by the company Flora. I think that one that calls for refrigeration works best for me. It also has pretty obvious dating on the bottle. My understanding is that probiotics lose efficacy over time.

[issie]

KayJay, The brand is Udo from what you told me. There are a few from that company and I'm not sure which one you are talking about.

Issie

[kayjay]

KayJay, The brand is Undo from what you told me. There are a few from that company and I'm not sure which one you are talking about.Issie

No -the company is Flora. The name is Udo's choice. The one I'm using is Super Bifido Plus Probiotic.

If you search "flora" you can find it.

Sorry I'm not familiar with undo I found it in the refrigerated portion of the suppliment isle in Whole Foods.

[issie]

Okay, will look for it.

Issie

[Gemma]

Hi Issie. I was reading your post where you mentioned something about low aldosterone. 2 times my blood results showed low aldosterone, but my cortisol is high all the time. I spoke to 2 different endocrinologists about it, but they do not seem to be concerned. They say that because my ACTH chalange test showed normal cortisol levels, then i am fine. But 3 times my morning cortisol was very elevated, almost double. They says its probably due to stress of giving blood, which i know is not the case, because i had blood drown so many times in the past 8 months that i dont even care when they stick a needle in there ( i am sure all of us here dont care anymore). Also my aldosterone is on a low side. One time it was 6, this last time it showed 7. I spoke to my primary doc and he is concerned with my adrenals, even though the 2 endo docs dont care for it. My primary says that they go by the book, and if its not too much out of range then they dont care. He says i need to focus on my adrenals, because he belives most of my symptoms are caused by it. Also he says that since flurinef makes me feel better and its a steroid mean that my adrenals are not functioning right. Does anyone can give me some info on what i am dealing here with. Also how do i get tested for mast cell disease? Thanks.

[Psalm 23]

Issie,

The Nephrologist I see is here in CA. He is really not that familiar with POTS and all its various associated problems. I was referred to him by my Rheumatologist because of the low gfrs and even though they are now normal I still have to follow up with him because of my past nephrectomy. My aldosterone and renin were within normal limits.

Your second paragraph regarding cellulose utilization and a particular gut bacteria is very interesting. I have the opposite problem as you do with regard to weight issues. I am on a losing trend again and trying to find a way to put it in reverse. I would try eating more complex carbs myself but I can't tolerate much of that type of food. Really many types of foods or very large quantities of food for that matter.

On a different note. Do you still eat at Loving Hut ? We still eat at ours but have discovered a somewhat healthier vegan restaurant called Native Foods Cafe. I'm so glad more of them are popping up. Maybe you have one in your area.

Kayjay,

I'm with you on the boring food bit. It really does get tiresome having to constantly think about what you eat and how well it will be tolerated and having to keep eliminating things. I went gluten free as well and have found it to be helpful. I will have to give your probiotic a try. Thank you.

Janet

[issie]

Hi Issie. I was reading your post where you mentioned something about low aldosterone. 2 times my blood results showed low aldosterone, but my cortisol is high all the time. I spoke to 2 different endocrinologists about it, but they do not seem to be concerned. They say that because my ACTH chalange test showed normal cortisol levels, then i am fine. But 3 times my morning cortisol was very elevated, almost double. They says its probably due to stress of giving blood, which i know is not the case, because i had blood drown so many times in the past 8 months that i dont even care when they stick a needle in there ( i am sure all of us here dont care anymore). Also my aldosterone is on a low side. One time it was 6, this last time it showed 7. I spoke to my primary doc and he is concerned with my adrenals, even though the 2 endo docs dont care for it. My primary says that they go by the book, and if its not too much out of range then they dont care. He says i need to focus on my adrenals, because he belives most of my symptoms are caused by it. Also he says that since flurinef makes me feel better and its a steroid mean that my adrenals are not functioning right. Does anyone can give me some info on what i am dealing here with. Also how do i get tested for mast cell disease? Thanks.

Did they check your renin levels? That could tell you whether or not there is a kidney issue. If it truly is your adrenals - addressing that probably would make you feel better. Few endo docs will address it if it is still within range. But, there are plenty of alternative type docs that will and mostly it's that type that do. If your primary is paying close attention to it - sounds like he is ready to try some things if needed. If you have high cortisol levels that's indicative of Cushings - do you have any other symptoms of that? Many of us that have been thought to have high cortisol levels - eveutually get low cortisol. My docs said that the adrenals will produce higher amounts until they can no longer do that and then things go low. I've heard of more POTS people using cortisol - rather than having high levels. Maybe, they have already gone from high to low ---if that is correct with what the docs have told me. There are many things that are in the "natural alternative" field that can help with this.

Do a search on the site for more info on MCAS. There is a lot of info on previous threads about that. It can appear similar to an adrenal surge when you have a mast cell degranulation. It's hard to tell if it's a NE release or mast cell.

[issie]

Issie,

The Nephrologist I see is here in CA. He is really not that familiar with POTS and all its various associated problems. I was referred to him by my Rheumatologist because of the low gfrs and even though they are now normal I still have to follow up with him because of my past nephrectomy. My aldosterone and renin were within normal limits.

Your second paragraph regarding cellulose utilization and a particular gut bacteria is very interesting. I have the opposite problem as you do with regard to weight issues. I am on a losing trend again and trying to find a way to put it in reverse. I would try eating more complex carbs myself but I can't tolerate much of that type of food. Really many types of foods or very large quantities of food for that matter.

On a different note. Do you still eat at Loving Hut ? We still eat at ours but have discovered a somewhat healthier vegan restaurant called Native Foods Cafe. I'm so glad more of them are popping up. Maybe you have one in your area.

Janet

Yeah, love the Loving Hut. We actually have two of them here. There are a bunch in CA. Each one is a franchise and depending on the ethenic type of person who owns it - determines the food. They are all different. We have one here that is Philipino and one Vietnamese. I like them both. I've found a bunch of different places that I can eat. I will Google to see if that one is here.

Yeah, maybe more carbs---make sure you stay whole foods though. I wonder if you could use a protein shake with fruit in it. To make sure I'm getting my protein - some days I use a pea protein powder and frozen fruit.

Issie

[Gemma]

Hi Issie. Thanks for reply. My renin was 1.88, which is within norms. But my aldosterone showed low on 2 blood tests and my cortisol is always high. I looked into Cushings syndrome, but it doesn't really fit with my symptoms. I would say addisons symptoms are more similar to what i am experiencing, but for that cortisol needs to be low and mine is high. My primary doctor wants to try some natural herbal treatment for this, some Chinese medicine. He said he will email me the info about it. I don't even know what to think anymore. I started feeling bad last december and still no real answers from doctors. I hope one day somebody will be able to tell e whats really going on with me. In the meantime i am finding all the info on this forum and thats how i get doctors to perform different tests for me. Thanks.

[Gemma]

Forgot to ask. So to be tested for Mast Cell disease, which doctor I would have to see? Thanks.

[issie]

Hi Issie. Thanks for reply. My renin was 1.88, which is within norms. But my aldosterone showed low on 2 blood tests and my cortisol is always high. I looked into Cushings syndrome, but it doesn't really fit with my symptoms. I would say addisons symptoms are more similar to what i am experiencing, but for that cortisol needs to be low and mine is high. My primary doctor wants to try some natural herbal treatment for this, some Chinese medicine. He said he will email me the info about it. I don't even know what to think anymore. I started feeling bad last december and still no real answers from doctors. I hope one day somebody will be able to tell e whats really going on with me. In the meantime i am finding all the info on this forum and thats how i get doctors to perform different tests for me. Thanks.

I think I'm one that had high cortisol for awhile and then it went low. I think the docs are right about how it goes. We are in hyperdrive and just somewhat burn out. I really like alternative meds. If he is familiar with Chinese med. that is a very good thing. I'd go with him. I'd like to know what he suggest to you. Be sure to PM me or write about it.

As for MCAS. The docs that mostly deal with it are immunologist, allergist and hematologist/oncologist. Depends on what you are looking for. Most of us have seen an allergy/immunologist. Dr. Afrin is the pro on this and if I could go see him that would be my choice of docs to see. Not sure where you live. There is a doc here at Mayo, AZ that is working with us too. Our neuro - Dr. Goodman is giving us treatment for it. He is working with a doc that was transferred here from MN - named Dr. Rank. I don't know him - I had seen Dr. Lewis - when I was there. But, the two of them - Dr. Rank and Goodman are working together on our behalf. Dr. Goodman is one of the well known POTS specialist and a very good doc for diagnoisis.

Issie

[Gemma]

I live in PA, philadelphia area. I am not sure if I have mast cell disease, but some symptoms are similar. I am very sensitive to most drugs. Can't take bata blockers at all, tried 2 and had really severe cough from it and also made me feel like zombie. I was never sensitive to meds before, but now i am sensitive to most. Also, I have developed this chronic cough a year ago and its not going away. Its just like a dry cough, feel like need to cough out air or something. It subsides when i go to sleep, but gets more severe while walking. I have been tested for asthma and don't have it. Ent and gastro docs thought its acid, so i am on nexium for past 2 month, but still cough. It subsided a little, but then this new neuro doc that i saw wanted me to try atanolol for chest pains and my cough returned and is not going away. I feel like its bronchospasms or something. I started with cough last August of 2012, then in december of 2012 got very sick. I thought i was dying. Since then still no answer of whats going on with me. Also in April i had a pulmonary ct scan with dye done and after that i started experiencing really bad symptoms of hypotension and elevated HR upon standing. I read online that people with mast cell disease, can react to dye like that. So i started wondering if thats what i have. Its been 4 month and i still have problems with my bp being very low and increase in hr. I wonder if ct scan caused it. Before ct scan i was fatigue, lightheaded, just feeling very sick overall, but after ct scan problems with hypotension and hr started. Well anyways thats my story . I sometimes get really scary when i have bad episodes with my cough. I do have albuterol for just in case situations, but i do mot have epi pen, and sometimes get very scary that i will get some really bad allergic reaction or something and will not be able to breath. I think i really want to be tested for it.

I will keep you updated with the info that my doctor recommends.

Thanks for your recommendations.

[issie]

Could you go see Dr. Afrin? He's in South Carolina. Talk to ChristyD - her son went there and still sees him. She can tell you more about him. There are some mast cell sites that you can also visit and get more of a feeling if you think this is it. Mast cells can affect breathing. Yes, we can have reactions to dye for sure. I've had a lot of those type of test and make sure I take allergy meds before I'm to go through something like that. We take H1 and H2's and that helps. Have you trialed that to see if it makes a difference? I use Zantac 1/2 and Allegra. Exercise can trigger a mast cell release.

One guy has had breathing problems as his main complaint and just found out he has sojourns. Have you been checked for that? He thinks there is more to it with him - but, the breathing is his biggest concern. His name is RichGotPOTS.

Issie

[Gemma]

What kind of meds do you take before you have ct scan done? My cardio doc wanted me to do ct scan of the heart for my chest pains, but i am afraid to have a reaction as before. Do i have to ask him for the meds before the test? Also, do you think that the dye from ct scan could have provoked my symptoms of hypotension and could i still have them after 4 month. I sometimes blame it on the ct scan but its been 4 month.

[issie]

.

[issie]

But, thinking about it more. I think a vaccine triggered my POTS. Maybe, it triggered something. My dad got Guillian Barre from a flu shot and there is lasting neurological damage from it.

Issie

[Gemma]

I also had vaccine done right before my symptoms got really severe, i had a T-Dap done for school.

[issie]

I also had vaccine done right before my symptoms got really severe, i had a T-Dap done for school.

More indications of vaccines triggering something.

Issie