Author Topic: Interesting article  (Read 4634 times)

mwatto

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Interesting article
« on: September 18, 2021, 02:00:58 am »
https://geneticsmr.com/articles/8157
Plenty natural compounds that work on this pathway such as: resveratrol, quercetin, curcumin, genistein and berberine and boswellia
Michele
20 x19x14mm Cystic AN diagnosed Feb 2019. CK.
Mri 2019 shrinking: 18x17x13 mm.
Mri 2020 - no cysts visible stable.
MRI 2021 stable no change
MRI 2022 stable no change.
MRI 2023 Further reduction 12x12x10mm!! Hearing 85%
MRI 2024: No change AN or hearing

judyette

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Re: Interesting article
« Reply #1 on: September 18, 2021, 02:00:19 pm »
Thank You Michele!  Very interesting indeed.  I downloaded both the full article and the abstract, and will read it more thoroughly.  I'm so glad they are doing this sort of research. 

judyette

notaclone13

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Re: Interesting article
« Reply #2 on: September 20, 2021, 11:35:13 pm »
Thanks for posting this Michele. Hope you’re doing well.

SP

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Re: Interesting article
« Reply #3 on: September 29, 2021, 11:02:27 pm »
Great article Michele! hope you're doing well.

Stella
My AN Story – Sydney to Stanford CK
2.3 x 2.2  June 2022@7yrs
2.9 x 2.9  May 2020@5yrs
2.9 cm  Mar 2019@4yrs
2.9 cm  Aug 2018@3yrs
3.1 cm  Aug 2017@2yrs
3.2 cm  Aug 2016@1yr
3.2x3.0x2.5cm AN; CK Aug 2015

mwatto

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Re: Interesting article
« Reply #4 on: November 10, 2021, 08:06:08 pm »
Hi Stella and Notaclone I am doing great.
 I have finally recovered from almost 6 weeks of issues after first P vaxx which left me with tinnitus, earache (really bad) almost trigeminal pain in ear and behind eye and well a few other things like pins and needles, eyes blurring. I was so worried it was causing AN swelling...and too scared to have the next one. Anyways I feel ok now - a neck physio really helped as did a heap of supplements. I joined a forum with many others with exactly same symptoms which helped me to realize that was not the AN probably. Today I feel a lot better. I have been taking fucoidam which Prof Maruto told me he had studied for AN. Also boswellia and bromelain. And melatonin as always as it also works on the PAK-1 pathway which drives the AN growth (according to Maruto who studied it for 30 years). My tinnitus has dampened right down, no more blurring eyes or earache (thank God) and I am feeling almost back to normal again. Now for the second jab ahahaha! No hearing or balance issues tho on my forum re tinnitus and hearing loss after vxx many have had that. My hearing and balance seem ok.
Michele
20 x19x14mm Cystic AN diagnosed Feb 2019. CK.
Mri 2019 shrinking: 18x17x13 mm.
Mri 2020 - no cysts visible stable.
MRI 2021 stable no change
MRI 2022 stable no change.
MRI 2023 Further reduction 12x12x10mm!! Hearing 85%
MRI 2024: No change AN or hearing

SP

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Re: Interesting article
« Reply #5 on: November 11, 2021, 02:24:22 am »
Hi Michele,

It sounds like its been truly challenging for you, I am so glad you're feeling better. So concerning to hear of the cascade of effects on your body. Can you share the forum your referenced? I'm curious to understand scope of potential side effects here.

Good to hear from you !

Stella
My AN Story – Sydney to Stanford CK
2.3 x 2.2  June 2022@7yrs
2.9 x 2.9  May 2020@5yrs
2.9 cm  Mar 2019@4yrs
2.9 cm  Aug 2018@3yrs
3.1 cm  Aug 2017@2yrs
3.2 cm  Aug 2016@1yr
3.2x3.0x2.5cm AN; CK Aug 2015

KH19380

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Re: Interesting article
« Reply #6 on: February 03, 2022, 06:02:15 pm »
In no way is any of this medical advice I am only sharing my experience.

The poster is correct. There are numerous natural compounds that are effective for AN and many many other diseases. My journey began a year ago. I am a 46-year-old male, 200 lbs with no history of cancer, bloodwork is all clean as a whistle. Ordinarily, I eat organic foods, limit alcohol and sugar and work out 3X a week.

Last January 2021 I was diagnosed with a very small AN in my right ear in the auditory canal. I do know the standards of care we get are not the only way. Planet earth and all of its compounds are too amazing and diverse for that nonsense. The major issue with many of these compounds is getting dosages that are pharmacologically relevant for the condition you are treating (are you getting enough?) and BIOAVAILABILITY. "Ok I took 1000mg but it is only 5% bioavailable and I need a full 1000mg daily for it to be effective--but one bottle of 90 caps is $100 bucks and I have to take 80 caps a day" sort of problem.

My research led me to a compound called Sulforaphane--found in cruciferous vegetables like Broccoli, Cabbage, Brussel sprouts. Pretty amazing compound AND 70% bioavailable. Until just last year it was only available from one company in France that holds the patent for pure stable sulforaphane. You can get it through your diet but that's a lot of cabbage...and toilet paper. Also once you cook it loses potency. In vegetables, it is made up of two chemicals (glucoraphanin and myrosinase) that once ingested together turn into the compound sulforaphane. The supplement, however, bypasses all the hassle and it is in the pure form already. Once taken it enters the bloodstream and passes the blood-brain barrier.

I found the company in the US and reached out to their CEO so I could get a discount and order larger quantities. For a period of one year, I took roughly 60mg (70% bioavailable + 10mg per capsule= 8 caps per day) this is what I read on PubMed and after some math figured this would be the proper dose. After eating a full meal I would take the entire dose (it upsets the stomach if empty). Another feature of this amazing compound is my blood pressure is spot on 110/60 (was prehypertension). I smoked (quit) for 25 years and drank alcohol moderately up until a few years ago (lifestyle change/new business).

1 year later:
I am happy to report I received my results today: As it reads: "No abnormal enhancement or mass is noted in either internal auditory canal.

The tumor has left the building, I have zero personal clinical data-no fancy charts but beyond not holding a cell phone to my head anymore this is the only change in lifestyle. I DID start taking another compound recently, HONOKIOL, which is only 5% bioavailable (remember that whole 80 caps a day thing) and has amazing potential against cancers and tumors. I take 6 caps a day for about the last two months. Not sure if it had any effect.

Best to all.

mwatto

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Re: Interesting article
« Reply #7 on: March 17, 2022, 08:21:53 pm »
Thats fantastic news for you! I juice broccoli every day with other veg. Just a quick question- did it affect your thyroid in any way? I also take other compounds that target the PAK-1 pathway (ginger, bromelain, boswellia, lemon balm tincture, fucoidan)...PM me anytime to chat on and thank you for your response to my post.
« Last Edit: March 17, 2022, 08:30:23 pm by mwatto »
Michele
20 x19x14mm Cystic AN diagnosed Feb 2019. CK.
Mri 2019 shrinking: 18x17x13 mm.
Mri 2020 - no cysts visible stable.
MRI 2021 stable no change
MRI 2022 stable no change.
MRI 2023 Further reduction 12x12x10mm!! Hearing 85%
MRI 2024: No change AN or hearing

SP

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Re: Interesting article
« Reply #8 on: March 17, 2022, 09:27:18 pm »
Hi KH19380 -- that is an awesome result!

Can you share the details of which Sulforaphane you took?

So great that you are on a healing path.

Stella
My AN Story – Sydney to Stanford CK
2.3 x 2.2  June 2022@7yrs
2.9 x 2.9  May 2020@5yrs
2.9 cm  Mar 2019@4yrs
2.9 cm  Aug 2018@3yrs
3.1 cm  Aug 2017@2yrs
3.2 cm  Aug 2016@1yr
3.2x3.0x2.5cm AN; CK Aug 2015

skier

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Re: Interesting article
« Reply #9 on: March 18, 2022, 08:15:25 am »
Thanks to everyone on this thread. I am starting to have faith in the Sulforaphane supplement, based on research and my own experience.

See also: https://www.nature.com/articles/srep36215

"SFN (sulforaphane) may therefore represent a potential chemotherapeutic agent for the treatment of VS."

Read the whole article, if interested. See a product with Broccoli seed extract, that you can easily find on Amazon. Look for a very well-researched serious looking brand and you will find it. It has the dose level mentioned by KH19380.

While waiting to form a treatment plan, and while waiting for my first 6-mo MRI that is to follow up my first MRI, I have been taking broccoli seed extract daily. Anecdotally, I have seen a marked reduction in two problematic areas of symptoms. I am encouraged.

I don't know yet whether the broccoli regimen will defeat my Acoustic Neuroma, but there is scientific research that leads us to be hopeful. And it clearly is safe to try. And, so I try.

Best,
Skier

« Last Edit: March 20, 2022, 04:56:44 pm by skier »

donjehle

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Re: Interesting article
« Reply #10 on: March 18, 2022, 08:45:53 am »
That's a very interesting article.  Thanks for sharing it, skier!
Burning Tongue, Loss of Hearing & Balance, and Tinnitus led to MRI. Very small AN found on 11/23/2021
While watching and waiting, lost significant hearing. WRS now at 12% (down from 100%). Was fitted with CROS system on 3/7/22.  Stable MRI on 7/29/22
No treatment yet.

mwatto

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Re: Interesting article
« Reply #11 on: March 19, 2022, 08:05:14 pm »
Thank you for responding! Yes I agree I think that broccoli seed extract way to go. Also look into fucoidan, bromelain, maybe pomegranate extract (uridin). I tried out propolis also (Bio 30) but that tasted awful! So did black seed oil. I work on neuro inflammation every day so this involves various food /herb related supplements such as boswellia, lemon balm tincture, melatonin. Also D3/k2. I also use antihistamines which are antiviral. I just keep working on inflammation basically... ongoing.
Michele
20 x19x14mm Cystic AN diagnosed Feb 2019. CK.
Mri 2019 shrinking: 18x17x13 mm.
Mri 2020 - no cysts visible stable.
MRI 2021 stable no change
MRI 2022 stable no change.
MRI 2023 Further reduction 12x12x10mm!! Hearing 85%
MRI 2024: No change AN or hearing

Clover131

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Re: Interesting article
« Reply #12 on: March 30, 2022, 06:44:19 am »
Michelle- I also could not stand the taste of the Bio30. I buy empty capsules and put the liquid in the capsules to swallow. 

mwatto

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Re: Interesting article
« Reply #13 on: April 03, 2022, 07:11:20 pm »
Yes the Bio 30 am not sure about- on the NF2 website I read insufficient evidence. I am taking the fucoidan, sulfurophane and I drink hibiscus tea. For an anxiety I already take lemon balm tincture which also works on the pAK-1 pathway. It also helps with the stabbing ear pain I get - in fact its been very effective for nerve pain!
Michele
20 x19x14mm Cystic AN diagnosed Feb 2019. CK.
Mri 2019 shrinking: 18x17x13 mm.
Mri 2020 - no cysts visible stable.
MRI 2021 stable no change
MRI 2022 stable no change.
MRI 2023 Further reduction 12x12x10mm!! Hearing 85%
MRI 2024: No change AN or hearing