Echinacea

[PattiL]

As I was searching Echinacea, I saw that a few of you have had trouble taking it and some of you have taken it w/o any problems. Is there a specific reason why it would bother someone with POTS? How about Vitamin C. We thought they might help kick start her immune system Anyway, seems like chrissy's POTS doesn't care for it much, or at least we're blaming it on that.

Chrissy just went to an allergist/immunologist again at the recommendation of her ENT Dr. He's so *&^%&*(( arrogant! Her ENT Doc suggested she get her immune system checked again since she's still having 'sinus infection symptoms' w/o having a sinus infection. We also mentioned Mast Cell Activation Disorder and he proceeded to tell us that he's never heard of it AND that it was pretty ridiculous that we even think that she has any type of mast cell disorder. He had the attitude of the 'how dare we question his knowledge'. Anyway, he ordered the blood test and 24 hr. urine test to pacify us and shut us up. My feeling was to just get the test results and go to another Doc at the Cleveland Clinic who specializes in Mast Cell. We see him at the end of September. Chrissy has many of the symptoms of the disorder, but of course, 'there's NO way she could have this', especially, since 'I've never heard of it!

ARGH

PATTI

[Megan]

Sorry for such a frustrating visit!

I've never had an issue with vitamin C. Hope actually get some stuff figured out with that stupid doctor!

Meg

[Rachel]

So sorry about the frustrating doctor experience. I hope that the doctor at the Cleveland Clinic is helpful.

I've heard that Echinacea is supposed to boost your immune system (though I'm not sure how conclusive testing has been). If someone has dysautonomia caused caused by an auto-immune condition, then they wouldn't want their immune system boosted. Some people also have allergies to this herb, so you have to be careful about that too. If Chrissy's POTS flared up after having Echinacea, then I'd discontinue the herb until you can speak with a doctor about it.

I hope you can find out what is going on.

Rachel

[firewatcher]

If Chrissy is having "sinus infection symptoms" without a positive skin test for allergens, it is probably vasomotor rhinitis (another lovely ANS issue!) I just talked to my allergist about it: If she reacts, like I do, to strong smells, or cold air, etc. It is Vasomotor rhinitis and not allergic rhinitis. My allergist says I have both, and a CT scan showed 3 separate sinus infections that I did not feel symptoms for. I was checked for MAST cell disorder too, but unless an episode happens during the 24 hour urine collection, it will probably come back negative. My general practice doc mentioned a possible vitamin D deficiency that he wants to test for, apparently if you are hyper-immune in your reactions (like I have to my allergy shots,) you may be short of vitamin D. I have not had that test yet, and after some really bad reactions to "natural supplements" I don't just take anything anymore without consulting him first. Good luck, and let us know how Cleveland goes.

[Bella127]

firewatcher,

I actually was recently diagnosed with vasomotor rhinitis by my ENT! I'm definitely sensitive to smells, smoke, irritants etc., and it seems I always have a sinus infection. Or the symptoms of one - although I DO have greenish/yellow (infected) mucus almost every time -sorry for being so descriptive...love these symptoms!- making me believe it IS an infection? anyone have thoughts on that?

Plus, every time I go to my primary, she tells me it's an infection, and hands out the antibiotics. I know they're not good for me to be on all the time, and it's hard for me to believe I'm actually getting real sinus infections without there something being wrong with my immune system (the allergist did the blood test to be sure, although the blood test from a year and a half ago showed my immune system was fine). Every 4-6 weeks I keep getting these "infections", and am back at the primary or my ENT. So basically by the time I get over one, another one is started! I looked into fungal sinusitis as a cause, because of the overuse of antibiotics (antibiotics create an environment fo the fungus to grow, creating another infection, which you think you need antibiotics for, etc... creates a vicious cycle), but the doc said he would have found that out when he did sinus surgery on me last year.

When I went to my ENT during what I thought was a sinus infection this last time, he did say he thought it was something upper respiratory, because I was coughing really bad (they did an x-ray to check for pneumonia), lots of mucus, congestion, etc. He had diagnosed me with vasomotor rhinitis a couple months ago, but aside from that I think I get a mix of the vasomotor symptoms AND infections.

What do you take for it? My ENT prescribed Astelin, and I do a saline nasal rinse every day. I can breathe a little better with both, but am still having all of the symptoms; I feel congested, my eyes burn, I feel weak as if I'm about the get the flu, etc. I've been like this ever since getting POTS.

And I did try to tell this allergist that I went to recently that if I don't have an episode within the 24 hours, then I most likely won't test positive for anything to do with MCAD...but of course he said he has "never heard of MCAD", and that I need to "stop going on the internet and reading what all the crazies post about their mast cell disorders and trying to fit my symptoms into what they're saying (those on the mast cell forums)"

What a jerk! So I'm sure I didn't have an "episode" during this urine test, which is why I am not looking forward to going back to him for the results -- I don't want to hear "I told you so" and have to sit there while he makes me feel like an idiot for coming in (which is basically what he was trying to get at last time - "You have none of these symptoms. So what, you get dizzy once in a while?" Grrrr!).

Thanks for bringing up the vasomotor rhinitis - I'm thinking it must be a bigger picture in all of this "sinus infection" nonsense than I thought. So you get sinus infections intermittently with the vasomotor? If you get sinus infections often, what does your doc say about it (or is it attributed to the allergic rhinitis)? And as far as Vitamin D deficiency, is that something that's taken care of with a vitamin? I do take a multivitamin every day.

We threw that Echinacea AWAY - no more of that! How horrible. I had vertigo (felt like I got a new prescription for my glasses - depth perception was off, etc.), bad headache, sweating, made the heat yesterday even worse. Overall my symptoms just got really bad. I didn't even THINK to check how it would react with POTS and my other medications! (I'll blame it on my brain fog ) A friend of mine takes it before she feels that she's getting sick, and she NEVER gets sick. I've been so frustrated with these sinus issues that I'm desperate to fix it any way I can.

I'm kind of at the end of my rope with this sinus stuff...it's really getting in the way of me being able to do much of anything. I'm finishing my last year of my BA online now, but it just makes me feel so uncertain about the future - how will I be able to work full time (or at ALL) if I can't manage these symptoms? I also want to work with children, which is another concern, because if I'm always getting sick with something, I'm also always CATCHING whatever anyone else has (and we all know kids are little petri dishes swimming with viruses, etc.). I worked at a preschool briefly last year (4 weeks) and had to quit because I got sick twice from the kids who had colds, was out for a couple weeks, came back and it happened again. I just couldn't do it. Meanwhile everyone else at my work didn't get anything- which makes me think it's my immune stuff, but my immune system is supposedly ok (as of last year, but should know the updated results in a couple weeks).

I always feel as though I'm getting a flu, so I just don't remember feeling "normal"...always run down, etc. It's so tiring, and I feel my POTS would be (ALMOST) manageable if I didn't have this sinus stuff knocking me down/exacerbating my symptoms!

Thank for the replies! We'll let all of you know how the appointment goes with the other doc...I have a good feeling about him. Hopefully he doesn't dismiss any of these sinus/MCAD issues!

Chrissy

[delphicdragon]

I take Echinacea Zinc Lozenges (from Halls) for when I get a cold for two reasons. 1) It seems to help, or at least I think so and 2) Menthol gives me such a stomach ache. I've not had problems with the herb, but I wanted to share that if you are Echinacea regularly, you need to take a break every 6-8 weeks. Also, if you are allergic to a lot of outdoorsy type things it might be a good idea to NOT take it.

Never heard of low Vitamin D causing super-sensitive allergic reactions. I have low Vitamin D (need to be restested to see if the supplements are helping) and only have super-sensitive reactions to mosquitoes (and that artificial butter coloring that has now been banned). Should look into that.

Sara