Author Topic: Clues' case so far  (Read 7515 times)

Lihua

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Re: Clues' case so far
« Reply #40 on: April 01, 2022, 05:56:22 AM »
hope it can help you. I also plan to do this treatment. God bless you!
all Chinese can send me a personal message, I have a wechat group. There are doctors researching POIS in Guangzhou, Beijing, Harbin.

Clues

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Re: Clues' case so far
« Reply #41 on: April 02, 2022, 03:45:53 AM »
hope it can help you. I also plan to do this treatment. God bless you!

Thanks a lot Lihua! Best of luck to you as well!

LookingForACure

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Re: Clues' case so far
« Reply #42 on: April 29, 2022, 05:46:42 PM »
hope it can help you. I also plan to do this treatment. God bless you!

Thanks a lot Lihua! Best of luck to you as well!

Hey Clues, I'm curious if you have any updates about the result of your fmt.  I hope everything is going well and you didn't get too many side effects!

I've been following your case for a while cause we have similar symptoms and both suspect a gut connection. I've been bullish on fmt being a potential solution for me but am, like many, concerned about the potential for side effects and the cost-benefit ratio given that it's an unproven treatment. If/when I go through with it, I'll definitely share my notes in this thread.

Clues

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Re: Clues' case so far
« Reply #43 on: May 15, 2022, 02:50:09 AM »
Hey Clues, I'm curious if you have any updates about the result of your fmt.  I hope everything is going well and you didn't get too many side effects!

I've been following your case for a while cause we have similar symptoms and both suspect a gut connection. I've been bullish on fmt being a potential solution for me but am, like many, concerned about the potential for side effects and the cost-benefit ratio given that it's an unproven treatment. If/when I go through with it, I'll definitely share my notes in this thread.

Hey LookingForACure! No clear improvement yet, but it's only been about 1.5 months. According to my FMT doctor, it usually takes at least 2-3 months before symptoms diminish, if they even do. Up to 6 months is also not unusual he said, IIRC. I'm also trying acupuncture in the hopes of calming my autonomous nervous system down.

Will post results in a couple of months.

Muon

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Re: Clues' case so far
« Reply #44 on: May 15, 2022, 10:35:57 AM »
My father has Raynaud's disease, and struggles to keep his hands warm during Norwegian winter. Not sure if connected, but I also struggle with cold extremities and what feels like poor circulation. See symptom list above.

Stellate Ganglion Block for Treatment of Patient with Raynaud’s Syndrome

https://poiscenter.com/forums/index.php?topic=4098.0

Clues

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Re: Clues' case so far
« Reply #45 on: May 24, 2022, 12:12:01 PM »
Very interesting, thanks Muon.

Mushnikk

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Re: Clues' case so far
« Reply #46 on: May 24, 2022, 12:19:32 PM »
My father has Raynaud's disease, and struggles to keep his hands warm during Norwegian winter. Not sure if connected, but I also struggle with cold extremities and what feels like poor circulation. See symptom list above.

Stellate Ganglion Block for Treatment of Patient with Raynaud’s Syndrome

https://poiscenter.com/forums/index.php?topic=4098.0

Stellatum blockade is something I have recently been looking into. Could be a substantial intervention for POIS I think. I also helped quite a few long covid patients already.

Clues

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Re: Clues' case so far
« Reply #47 on: May 30, 2022, 11:59:33 AM »
Came across peripheral neuropathy the other day. Can't believe I haven't seen this before, it explains some of my otherwise unexplained symptoms so well.

I'm going to try supplementing with chelated magnesium and see if it does anything.

Magnesium deficiency due to chronic stress and gut issues -> peripheral neuropathy? Worth exploring in my case I think.
« Last Edit: May 30, 2022, 12:12:28 PM by Clues »

Muon

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Re: Clues' case so far
« Reply #48 on: May 30, 2022, 12:20:07 PM »
A Systematic Review of Pharmacologic and Rehabilitative Treatment of Small Fiber Neuropathies
https://www.mdpi.com/2075-4418/10/12/1022/htm

See table 1 and 2


Mushnikk

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Re: Clues' case so far
« Reply #49 on: May 30, 2022, 12:44:31 PM »
I actually think that Stellatum blockade is an intriguing Intervention for POIS. Will try it with an TENS machine.

demografx

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Re: Clues' case so far
« Reply #50 on: May 30, 2022, 04:41:49 PM »
I actually think that Stellatum blockade is an intriguing Intervention for POIS. Will try it with an TENS machine.
Interesting! This furthers an exploration area of ours that was unfortunately cut short.
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

Clues

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Re: Clues' case so far
« Reply #51 on: June 05, 2022, 01:29:41 PM »
Interesting review of literature on the role of magnesium in neurological disorders.

My weirdly chronically chapped hands seem to be responding positively to magnesium applied to the skin. Could it support the idea of a potential deficiency in stored magnesium even though my blood level is in the normal range?

Lihua

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Re: Clues' case so far
« Reply #52 on: June 08, 2022, 03:47:35 AM »
hello bros, any updates about fmt?
all Chinese can send me a personal message, I have a wechat group. There are doctors researching POIS in Guangzhou, Beijing, Harbin.

Progecitor

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Re: Clues' case so far
« Reply #53 on: July 13, 2022, 12:52:24 PM »
No problem BoneBroth. Here is the report in case anyone else wants to check it out.

Yeah my beta-glucuronidase is well above the reference range at 8111 U/g. The reference range is 368-6266 U/g. Thanks for the link on that, I'll have a look.

Btw I remember you suggested SIBO before as a thing I should check out. Maybe it's time to take that test as well. Curious how many false positives there are in SIBO testing, does anyone know?

Hi Clues!

If fmt doesn’t work out then you may want to test Calcium D-glucarate if you haven’t already.

Dysbiosis:
Conjugated estrogens can be re-activated in the intestines and returned to circulation via the action of beta-glucuronidase enzymes, which are produced by E. coli, Clostridum and Bacteroides; thus intestinal dysbiosis may increase a man’s circulating levels of active estrogens. This would be seen as a decrease in the testosterone : estradiol ratio.
Supplementation with Calcium D-glucarate supports proper elimination of estrogen by inhibiting beta-glucuronidase, an enzyme produced by colonic microflora (e.g., E.coli) that hydrolyzes glucuronide conjugates, thus returning estrogen into circulation.
https://lmreview.com/bio-identical-hormone-replacement-selecting-the-right-hormone-tests-for-your-male-patient/

At least one POISer found it useful:

Someone on the facebook group(?) claims that Calcium D Glucarate helps when having POIS + Gilbert's.
https://www.reddit.com/r/POIS/comments/pwkx0a/are_we_goin_to_find_the_cure_finaly/

I've never heard of this, but when I search for 'Gilbert' on forum quite some people seem to havt it. Interesting... at least from 23andme I think I don't have it (rs34983651 II)

From https://www.bulletproof.com/supplements/vitamins-minerals/calcium-d-glucarate/ :
1. LIVER DETOX
2. REMOVING EXCESS ESTROGEN
3. DECREASE LDL CHOLESTEROL

The cause is probably the senescence of sexual organs and resultant inducible SASP, which also acts as a kind of non-diabetic metabolic syndrome.

Clues

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Re: Clues' case so far
« Reply #54 on: August 19, 2022, 07:47:16 AM »
Sadly no change in my POIS symptoms four months after the treatment.

Did not seem to help my IBS noticeably either.

I?m currently working on my breathing. Been breathing shallowly for years, and this can really mess with your gut and nervous system apparently. Will report back.

Thanks for the tip Progecitor.