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» LymeNet Flash » Questions and Discussion » General Support » Dysautonomia; Adrenal - He invented his own surgical cure

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Author Topic: Dysautonomia; Adrenal - He invented his own surgical cure
Keebler
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"Even lying on the floor didn't feel like it was low enough," he said. . . ."

Amazing journey.

Key points, as I see them:

paraphrased, problem / solution: he figured out that his body was pumping too much adrenaline into his system - but neither typical doctors nor typical imaging would concur.

He would be on his own to figure this out.

Still, after pouring through old medical textbooks and much study, he knew what was happening

but he would have to figure out just how it was happening and what to do about it on his own in order to find and convince doctors to do a surgery he would invent himself.

He did. It worked.

Key terms:

Dysautonomia . . . then, specifically: adrenal medullary hyperplasia

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https://www.cnn.com/2019/07/27/health/doug-lindsay-invented-surgery-trnd/index.html

This college dropout was bedridden for 11 years. Then he invented a surgery and cured himself

By Ryan Prior, CNN - Sat July 27, 2019

Doug Lindsay was 21 and starting his senior year at Rockhurst University, a Jesuit college in Kansas City, Missouri, when his world imploded.

After his first day of classes, the biology major collapsed at home on the dining room table, the room spinning around him.

It was 1999. The symptoms soon became intense and untreatable.

His heart would race, he felt weak and he frequently got dizzy. Lindsay could walk only about 50 feet at a time and couldn't stand for more than a few minutes.

"Even lying on the floor didn't feel like it was low enough," he said. . . .

[Full article at link above]
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[ 07-28-2019, 10:45 AM: Message edited by: Keebler ]

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Keebler
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http://www.dysautonomiainternational.org/

DYSAUTONOMIA INTERNATIONAL

- a non-profit that seeks to improve the lives of individuals living with autonomic nervous system disorders through research, physician education, public awareness and patient empowerment programs.
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Keebler
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https://www.youtube.com/watch?v=w4s0uNy8Q2g

Operation: Adrenal Gland - Doug Lindsay

TEDx Talks - TEDxGatewayArchSalon

17:07 video - Published on Jun 29, 2018

key terms:

Adrenal; Autonomic Nervous System (ANS); Dysautonomia

Of note, while family members were also affected with this mystery disorder (detailed in the CNN article in first post),

his experience with these symptoms were triggered in college, after being ill with mono (mononucleosis) and he just never recovered. He mentions mono in the talk but I wanted to be sure that trigger is taken in.
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[ 07-27-2019, 12:07 PM: Message edited by: Keebler ]

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Keebler
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POTS / NMH

Many with lyme also note mono as the first trigger that knocked them flat never really recovering,

and then lyme, et al came along and redefined what exhaustion and "vertically challenged" means..

Many, during lyme & coinfections, tend to develop problems of low blood pressure with standing up - or staying up -

- or failed attempts at exercise or even exhaustion with mild exertion . . . and even the absolute inability to exert at all upon will - but not necessarily every minute, every time.

POTS (Postural orthostatic tachycardia syndrome)

or NMH (neurally mediated hypotension) -

both are similar to each other; both are dysautonomic issues.

Most LLMDs are aware and these appear in various lyme articles and conference presentations.

Often, when lyme and other tick-borne or chronic stealth infections (mycoplasma, Cpn, etc) are fully addressed, some certainly do regain their various nervous systems functions.

However, overwhelming sheer exhaustion is such a force to figure out and it's most often very complex for some people.

Adrenal support sometimes helps and, along with liver support, is a key factor in any lyme, coinfection protocol. However, that might - or might not - be enough.

This presentation and article seem to suggest that for anyone with any kind of autonomic nervous system issue, since there can be numerous ways that can go kaput and it might not be just what we think at first -

In addition to exploring with a good LLMD (when possible) about what might overlap &/or what might actually be separate from chronic stealth infection, it might also be a good idea to check out

http://www.dysautonomiainternational.org/

Dysautonomia International


Also to consider: For many with lyme and TBD or other chronic stealth infections, the HPA axis is really compromised and signals can go haywire for various reasons, starting with the intensity and toxicity of lyme itself.

That's, in the brain, the hypothalamus & pituitary . . . then atop the kidneys, the adrenal glands.

The adrenals take the signals from the H & P. So, often, when there is adrenal trouble the whole triangle has to be considered. And, of course, first nutrition, sleep, etc.

An HPA axis that is all messed up - and together with the hit to the autonomic nervous system from lyme, that whole hit certainly can then advance to involve various aspects of dysautonomia.

For some, even just getting enough salt can help with POTS or NMH can help, or may be the first step. I need at least 5 grams a day of a good sea salt (Redmond for me). It really matters a great deal so that I don't pass out like I used to.

Many of us don't get enough salt. The "guidelines" are not correct on that.

Electrolytes & the full mineral complement, too, (best from our diet) but this is getting too long.
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[ 07-28-2019, 11:19 AM: Message edited by: Keebler ]

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Keebler
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https://www.youtube.com/watch?v=o82qHMG_6ow

Doug Lindsay speaks at

Society for Participatory Medicine

20:26 video - Published on Oct 26, 2018


https://participatorymedicine.org/

Society for Participatory Medicine

Transforming the Culture of Patient Care

Bylaws - Excerpt:

1. The Society For Participatory Medicine, Inc. (the “Corporation”) shall exist

to promote the concept of participatory medicine by and among patients, caregivers and their medical teams

and to promote clinical transparency among patients and their physicians

through the exchange of information on a website of the Corporation, via conferences,

as well through the distribution of correspondence and other written materials; to advance the understanding of physicians

and other professionals in the importance of well-informed, empowered and engaged patients making informed decisions about their care and treatment;

to foster communication among medical, communication,

patient advocacy and public health subspecialties and the
exchange of a wide range of ideas related to participatory medicine;

to support informational and other research programs of the highest quality in participatory medicine; . . . .


https://participatorymedicine.org/epatients/

Blog
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MissVictoria
LymeNet Contributor
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I take himalayan salt tablets for POTS and I highly recommend them. My symptoms are 90% better when I take them.
Posts: 194 | From New Jersey | Registered: Jan 2015  |  IP: Logged | Report this post to a Moderator
   

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