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Question for anyone taking NeuroProtek?

Discussion in 'Mast Cell Disorders/Mastocytosis' started by Gingergrrl, Oct 5, 2015.

  1. Gingergrrl

    Gingergrrl Senior Member

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    I was about to re-order NeuroProtek on Amazon (from Algonot) and noticed that there are now two versions. The original and now a "low phenol" or "LP" version. Can anyone explain to me what this means? @ahmo do you happen to know?
     
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  2. Ema

    Ema Senior Member

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    Phenols are a component of the quercetin and rutin. They are what help those substances to reduce histamine.

    But some children with autism lack the enzyme to break down phenols and so have a hard time tolerating them. So a formula with less quercetin and rutin is beneficial for those children.

    I doubt you have a deficiency in that enzyme and can use all the histamine inhibition you can get so I would not switch.
     
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  3. Gingergrrl

    Gingergrrl Senior Member

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    @Ema thank you and that is incredibly helpful!!!
     
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  4. justy

    justy Donate Advocate Demonstrate

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    @Gingergrrl - how are you getting on with the neuroprotek? im thinking of trying it...
     
  5. Gingergrrl

    Gingergrrl Senior Member

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    @justy I have been taking Neuro Protek since around May or June (the regular version, not the low phenol one) and it has been very good. I've never had any negative reactions to it and it is part of my total MCAS protocol of Zyrtec, Ketotefin, Quercetin, Neuro Protek and Daosin. It is hard to say which med has the greatest effect but for now I am not touching any of them b/c it is working. My rescue med is Atarax but have not had to take it in the last 1-2 weeks at all. I would recommend trying NP and nothing to lose IMO.
     
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  6. Dufresne

    Dufresne almost there...

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    I just finished experimenting with a bottle of NP, taking 6-8 gel-caps a day, and I didn't get anything out of it. The reason I tried it is I've pretty fast reactions to things, as in seconds sometimes. I don't know if the stuff is strong enough to work on its own, but then again I don't know if I have histamine/mast cell issues. I do know NP is really expensive at about $10/day (Canadian). And I believe they suggest taking it for up to three months to truly give it a try. That would only run $900. And the shipping for one bottle from Algonot in Florida was going to be something like $40. What is that? I ended up ordering from a Canadian distributor.
     
  7. Gingergrrl

    Gingergrrl Senior Member

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    @Dufresne I only take two capsules per day and it is less expensive buying directly through Algonot in the US (or on Amazon) so it's been okay for me price-wise. For me it is one of my maintenance meds for MCAS and as my symptoms are currently improving, I am not touching anything in my current regime!

    I started on IV Benadryl and Gastrochrom in the hospital so my current regime is much improved even though ideally I would love to some day not need to take it at all.

    If you suspect you might have MCAS, can you get tested for histamine, prostaglandins, tryptase, etc? My tests were high for 3-4 months before I even developed the symptoms but I had low grade/smoldering MCAS symptoms life long in hind-sight.
     
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  8. Dufresne

    Dufresne almost there...

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    You read my mind, I was just thinking of asking you what tests to run.

    My IgE has been quite elevated in the past despite not suffering the usual allergies. I'm not sure how this might fit in. I remember an "energy practitioner" telling me I didn't just have food sensitivities I had actual food allergy. To my knowledge I'm not at risk for anaphylaxis, and I've never gotten much out of antihistamines.

    You can probably tell I know little about this domain :whistle:
     
  9. Gingergrrl

    Gingergrrl Senior Member

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    @Dufresne I would start with blood tests for histamine, prostaglandins and tryptase (but tryptase is more to rule out actual mastocytosis.) There are also 24-hour urine tests that they can run.

    There is a great blog and site by Lisa Klimas that answers just about everything you wanted to know re: MCAS and is a good place to start. Plus the Masto Society (TMS for a cure.)

    My understanding is that it is not a true IgE mediated allergy and you could have allergies to specific foods or triggers without having MCAS.

    It doesn't sound like you have it from what you describe and was curious why you think you might?
     
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  10. justy

    justy Donate Advocate Demonstrate

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    @Gingergrrl - I have a bottle in the post right now. Am also starting ketotifen this week at 1mg at night as the itching is driving me insane. I have heard of people with MCAS and Lyme who take the ketotifen etc to stabilise mast cells while they treat and this is what I am going to attempt to do.

    The Neuroprotek was expensive - around 57 dollars plus shipping, but I would love to try and take more natural remedies as a year on antihistamines and H2 blockers hasn't done anything to reduce reactions.

    @Dufresne - just to be aware that ALL tests can be normal and you can still have MCAS - it really should be a clinical diagnosis. But its worth testing anyway as if levels high that firms the dx, if Tryptase high then that really means Mastocytosis - mine was normal so my dx is clinical - it's not easy to find a Dr that can dx MCAS - in the UK there are only two or three who can/will do this.
     
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  11. Dufresne

    Dufresne almost there...

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    I react to biotoxins, EMF, the process of eating (immediately), and when I'm in a pristine environment chemicals. Some have suggested that MCS is a mast cell issue. Dr Rea says in some cases it can be overcome by treating it. There was a speculative publication of whether EMF sensitivity might involve mast cells. And there are some who believe it may play a role in mold illness. I've such a variety of tissues that can become irritated by substances without antigens and what else can I think of that would cause such inflammation but degranulation of mast cells? And I thought it would be nice if there was an additional way of tackling my disease.

    What makes the biggest difference for me is mold avoidance and treating babesia. Shoemaker has stated he believes babesia produces a biotoxin, and I'm pretty sure he's right. I think this is what continues to keep my system sensitized; when I stun the bugger things start to return to normal.
     
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  12. Gingergrrl

    Gingergrrl Senior Member

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    @justy I think it is great that you are trying NP and Ketotefin. I take 2 mg of Ketotefin 2x/day (so 4 mg per day total) and have had no negative side effects from it. I truly credit it as the turning point and the med that started to improve my MCAS and allowed me to completely stop Benadryl and Gastrochrom. Several docs said you cannot get it in the US but my MCAS doc at first appt said that was untrue and you can get it only at compounding pharmacies, just not at regular ones. Am hoping it will work as well for you, too.

    This is completely true and you can be negative on all MCAS tests and still clinically be extremely ill and symptomatic. When I was tested at OMI in Dec 2014, my blood histamine was 3x higher than the upper limit but I had no symptoms. My doc was stunned b/c he had hardcore MCAS patients with normal blood tests and said it is very tough to capture. Then in March I had my first severe reaction to a yellow food dye and by May was having stage two anaphylaxis to anything I ingested except for water. In July my histamine and prostaglandins were still really high but my Tryptase has always been normal so I do not have mastocytosis vs. MCAS. Even in the US, there are very few docs who treat this disease and I was so lucky to get to see one right before he stopped taking new patients. Am so glad you got to see one as well.

    @Dufresne When you say you react immediately to the process of eating, what happens to you? Forgive me if you already explained this! I do not react to EMF but I do react to mold and strong smells. IMO it is all connected to mast cells.

    Mold avoidance and detox has been big for me as well even though I do not have babesia. I don't think most people recognize the role that mold can play in this illness.
     
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  13. Dufresne

    Dufresne almost there...

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    The EMF reaction is like any other sensitivity in that it can be aggravated by significant exposures. But like chemical and some food sensitivities there's no known mechanism by which the inflammation starts. Mast cells seems as good an explanation as any.

    It's interesting how these things fit together. There is no EMF sensitivity for me without biotoxins. Mostly removing mold from the situation has greatly improved things on this front and others. I expect eliminating babesia and the toxin it produces will take me to the point where I'd consider myself pretty healthy.

    I used to be able to fast and this would clear up most of my symptoms. The redness in my face and swelling under my eyes would clear. My nasal congestion would disappear, my brain fog would dissipate, and my EMF sensitivity would basically leave too. As would my fasciculations. Then within five minutes of swallowing food the whole complex would start again. However as I grew sicker fasting ceased to provide this relief.

    I can only guess at how eating and biotoxin inflammation are connected. Lots of people have speculated that all these sensitivities involve mast cell reactions, and it would be nice to know if this were the case. But I'd relinquish my curiosity if I could only make it stop. At this point all the symptoms I describe begin to lift as I stun babesia so I'm quite sure it's the aggravating factor regardless of the mechanism. It's now just a matter of figuring out how to deal with the bug. Luckily I've made a couple discoveries of late that should help me get there.
     
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  14. justy

    justy Donate Advocate Demonstrate

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    @Dufresne - I hope you continue to mnake progress. My Babs Fsh test was negative, but have been told there is a high false neagtve rate with testing. My Lyme dx is clinical as im no longer producing antibodies.
     
  15. Gingergrrl

    Gingergrrl Senior Member

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    This is of great interest to me, too, if you ever find out the answer! In my case, I felt my body & immune system could no longer fight the level of mold we were unknowingly breathing in at home and it sent my body into chaos which resulted in MCAS. I believe the mold was the final trigger that allowed me to get MCAS. That is my theory.
     

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