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Quercetin, anyone?
Posted: 17 March 2012 07:39 PM   [ Ignore ]  
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Would love to hear stories if you’re on this…

Effects (good/bad)? Dosage? With or without Bromelain?

Jen

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~The goal is not to live forever but to leave something behind that will.~

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Posted: 17 March 2012 09:09 PM   [ Ignore ]   [ # 1 ]  
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JenniferWaters - 17 March 2012 07:39 PM

Would love to hear stories if you’re on this…

Effects (good/bad)? Dosage? With or without Bromelain?

Jen

Hi Jen, I tried this! I don’t remember the dose, honestly, but I took it without Bromelain. I couldn’t tell any difference, but sometimes I get impatient! I may give it another whirl (and Lutein, which I also couldn’t tell a difference). I realize that the effect may not be perceived, and a month or two may not be a fair trial. So, I’ll likely go back on. After all, I NEED more pills! HA!

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Dr.Diana, therapeutic optometrist disabled by EDS/POTS/ME/CFS for a decade, now recovered and practicing full-time at POTS Care cheese

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Posted: 18 March 2012 06:10 PM   [ Ignore ]   [ # 2 ]  
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We found our magic pill in enzymes.  They cut his fainting and seizure like episodes down by half.  Quercetin has helped!  Every histamine blocker we have added (over the counter) plus natural ones has brought Caleb a little more back to normal.  We still have some work to do but we have came a long way.

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Posted: 18 March 2012 06:32 PM   [ Ignore ]   [ # 3 ]  
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Thank you both! I’m super sensitive to meds but heard the Quercetin really doesn’t have many side effects (I’m sure I’ll have some!). I’m just worried because antihistamines bring down my heart rate and bp and affect my cognition. I love having so many symptoms! The pill that helps one symptom worsens another! Ah!

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Posted: 18 March 2012 07:00 PM   [ Ignore ]   [ # 4 ]  
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Hi Jen!

My son also reacts to almost everything too.  He has not reacted to his blood pressure medicines or his histamine blockers.  He is taking 500 mg. of quercetin a day plus 100 mg. of bromelain.  It also has Vitamin c in it.  He also does other enzymes.  Enzymes has been very important for him…

Caleb’s blood pressure goes as low as 69/35 and a heart rate that varies 30-200.  I was scared to start the dye free benedryl as I was afraid it would lower his blood pressure more but it didn’t.  It seems when you try to fix the problem…you don’t react to the medicine??

He has had seizures for 9 years…. seizure medicine never controlled his seizures and most of them he VIOLENTLY reacted too.  Since starting the blood pressure medicines plus the natural histamine/over the counter histamine blockers he is seizure free first time in 9 years.  Hmm…  I think we are finally on the right track.  I am praying one day my son can be able to live like a normal healthy child again.
Take care!

 

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Posted: 18 March 2012 07:30 PM   [ Ignore ]   [ # 5 ]  
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You are right about that, I believe. Fixing the problem should correct the sensitivity. I need to get my mast cells stabilized and my blood brain barrier somewhat ‘closed’. I’m hoping that will help my extreme reactions.

I’m so glad the Benadryl didn’t confirm your fear and that you are finally getting somewhere. Isn’t it WONDERFUL to have a spark of hope again? When I think I’m down to nothing, something comes out of nowhere and makes me realize I can’t give up yet. So happy for you.

Jen

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Posted: 19 March 2012 06:02 AM   [ Ignore ]   [ # 6 ]  
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Hi Jen!

I am so happy God led me to Dr. Diana’s site.  Dr. Diana and all of her information is giving me hope again.  The last 2 years has been a nightmare with my son.  His story is a very long one and I have known for 9 years his seizures were caused from something else.  Seizure medicine never controlled him in fact they made him 100% worse.  We quickly seen FOOD was his trigger.  His episodes were “eye twitching” and zoning out in the beginning and usually came after eating and nights would be worse if he ate the wrong foods.  No one knew he had seizures until Caleb hit puberty.

2 years ago at puberty, our lives changed quickly.  After getting on the Modified Adkins diet he did good for a couple of weeks and then things went really bad.  They had changed his seizure meds to Topamax which most seizure medicine made him 100% worse.  He was drinking at least a gallon of cream a week and meats (which is high histamine—especially the cream since it was pure right from a farm).  Now….I believe I know why things got horrible.  But….it lead me to the true reason….the mast cell connection.  He now has been diagnosis with POTS (fainting and vitals are real low)....and now waiting results from the histamine/mast cell labs.  I am just so scared that the labs won’t diagnosis him.  The medical world just doesn’t get it…  My son at his worst didn’t know his name….and if he talked it was “slow” like a stroke victim…  He hasn’t been in school now for almost 2 years.  He used to get A’s in Algebra in 6th grade and now struggles with simple math.  We now do home schooling (virtual) and he can only handle a hour a day (if that) of schooling.  I worry the most about his cognitive issues…he does off the wall things that I fear he could get hurt.  Praying we all get our answers soon!

Thank you Dr. Diana for this wonderful site!  I am telling everyone on my facebook support groups about you!  You are giving us hope again!

Also….now Caleb is seizure free first time in 9 years!!!!  Yes….seizures can be a symptom not the diagnosis…  I want to be able to help others families now….I am praying I have a chance to tell Caleb’s story so he can help others…

Have a great day!

 

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