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» LymeNet Flash » Questions and Discussion » General Support » POTS: patient's illustrative account "finding new normal"

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Author Topic: POTS: patient's illustrative account "finding new normal"
Keebler
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By the time I added some of my own study notes, this has turned into a

DYSAUTONOMIA - Informational Links Set

------------------------------------------------------

https://www.thelily.com/a-chronic-illness-upended-my-life-im-still-trying-to-find-a-new-normal/

A chronic illness upended my life. I’m still trying to find a new normal.

Should I talk about my diagnosis on a first date? Tell my friends if I’m feeling particularly awful?

Story by Aviva Loeb, illustrations by Katie Wheeler

- The Lily / Editor's Pick: published by The Washington Post - August 11, 2019

. . . "Finally . . . diagnosis: Postural Orthostatic Tachycardia Syndrome (POTS), which causes . . . blood vessels to expand more than they should.". . . .
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[ 08-11-2019, 02:51 PM: Message edited by: Keebler ]

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Keebler
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POTS - and the similar NMH (neural mediated hypotension) - often affects many who deal with lyme and other tick-borne &/or other chronic stealth infections such as Cpn, EBV, Mycoplasmas, etc.

For myself (and many others) exercise intolerance is involved in the range of symptoms, too.

Although, not everyone with POTS or NMH will have these kinds infections, they could be one underlying cause &/or trigger of symptoms that often go undiagnosed &, often, treatment for infection(s) can help resolve some aspects of dysautonomia such as POTS / MNH.

For myself, Sea Salt (I take up to 5 grams a day), magnesium, and adrenal support have helped me decrease the most annoying NMH symptom:

Vasovagal syncope - I had to wear clothes the same color as dirty sidewalks when I passed out so often but the matter of injuries finally curtailed my ability to even go out at all.

A "Tilt Table Test" helped with diagnosis though that was many years ago. And, for myself, inner/middle ear (vestibular) issues added complexity.

Also something that affects many with lyme, et al. And many Rx can trigger vestibular matters, too, due partly to ototoxicity and other side-effects.

Cross Search: "drug name" "Neil G. Bauman" ototoxic

I do not know what the current POTS / NMH tests are - but for those with lyme, et al be sure to consult your LLMD or LL ND for there is so much more to this and

diagnostics -- for anything else -- diagnostic or expert referrals best made through a thoroughly "lyme literate" doctor.
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Keebler
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http://www.dysautonomiainternational.org/page.php?ID=34

DYSAUTONOMIA International

great chart - and lots of good text

What is dysautonomia?

Dysautonomia is an umbrella term used to describe several different medical conditions that cause a malfunction of the Autonomic Nervous System.

The Autonomic Nervous System controls the "automatic" functions of the body that we do not consciously think about, such as heart rate, blood pressure, digestion, dilation and constriction of the pupils of the eye, kidney function, and temperature control.

People living with various forms of dysautonomia have trouble regulating these systems, which can result in lightheadedness, fainting, unstable blood pressure, abnormal heart rates, malnutrition, . . . .
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[ 08-11-2019, 02:36 PM: Message edited by: Keebler ]

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Keebler
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http://thenaturalhealthblogger.com/2015/10/22/8-natural-methods-for-balancing-the-autonomic-nervous-system/

Natural Methods for Balancing the Autonomic Nervous System

Excerpts:

. . . 7. Nervine & Adaptogenic Herbs . . . .

. . . 8. Diet, Nutrition & Micro-Nutrient Deficiencies . . . .

in comments (though always go back to the original source of any comment to verify, expand context):

Dr Lawrence Wilson talks a bit about parasympathetic dominance in his article on the autonomic nervous system. . . .

- here is the link to the source in case it helps –

http://www.drlwilson.com/articles/AUTONOMIC%20HEALTH.htm
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Keebler
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https://www.drlam.com/blog/pots-disease/10843/

Impact of POTS Disease (Postural Orthostatic Tachycardia Syndrome) on Adrenal Fatigue

By: Dr. Michael Lam, MD, MPH; Justin Lam, ABAAHP, FMNM; Dorine Lam, RDN, MS, MPH
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Keebler
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https://www.youtube.com/watch?v=omSle_qAJJo

Dysautonomia, an invisible illness . . . Patient perspective on dysautonomia.

3-minute video - Sep 9, 2015


https://www.youtube.com/watch?v=faScrmgKcWg

Postural Orthostatic Tachycardia Syndrome (POTS),
Dysautonomia, and the Autonomic Nervous System

Description, Physiology, Etiology, and Management

Carrie Burdzinski, M.S. - 2-hr. video - May 15, 2013


https://www.youtube.com/watch?v=0d4H7xd_F1I

Autonomic Dysfunction - JUGULAR DYSAUTONOMIA (formerly known as CCSVI)

Michael Arata MD

15-minute lecture - Feb 16, 2013
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Keebler
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https://www.youtube.com/watch?v=xVfi2hbg69g

Understanding Dysautonomia and POTS

By York Cardiology (in England)

9:42 video - Nov 24, 2017
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TX Lyme Mom
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You're going to love this website, Keebler. It's located in the DFW area and is run by a OD who suffers from POTS herself. Her office is near the DFW airport, and desperate patients fly in from everywhere to this POTS clinic.
https://potscare.com/about-us/

There's a ton of in-depth information and related resources about POTS on this website, so do plan to spend plenty of time here so that you won't overlook anything of importance to your personal situation.

PS -- I must confess that I haven't had sufficient time yet to look at all your links, Keebler, but I wanted to post this link for you ASAP and then I'll come back again to study the rest of your special topic more thoroughly later, when time permits.

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Keebler
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TX Lyme Mom,

Thanks a bunch. Can't read much today but will be sure to check back on this. Your note is very encouraging - just to know an OT exists like that. Sure not like any medical person I ever encountered. Looking forward to checking out the link.

And, I assure you, I will study all the stuff there. Even if I can't go anywhere, there are often things I can learn to do right here on my own.
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Lymetoo
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The Trifecta:

EDS, Mast Cell Disease, POTS

If you have one of these, look for the other two.

--------------------
 -
oops!
--Lymetutu--
Opinions, not medical advice!

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TX Lyme Mom
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Keebler,
I forgot to give you the link to her companion website, which is just a fantastic, if not even better, than her first website link given in my previous message above.
http://prettyill.com/resources/view/high_intracranial_pressure_dont_miss_this_easy_to_treat_cause

Remember, this person healed herself, using the tools of her trade as an OD (doctor of optometry). If she can achieve a state of normal wellness and can maintain it, then it's encouraging to believe that you can do so too by learning from her example on her website.

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Keebler
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TX Lyme Mom,

Thanks for the companion link. I still am not quite alert enough to immerse myself in any degree of critical thinking right now -
later, I hope.

Still, I'm so grateful to have these. Thanks, again.
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Keebler
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TX Lyme Mom,

Really appreciate the links now that I've had some time to go over them. the last one, about intracranial pressure -- and how low iron can be one cause.

Wonderful page, that is.

I just started eating liver last week. I found a place that has grass-fed and grass-finished / pastured beef and organ meats.

Can't say I'm lifting up the couch to vacuum (or even the vacuum to vacuum . . . but the iron connection is important with my history of severe anemia over many decades on and off -

- though for those new to lyme, be aware that babesia can also cause anemia.

I think the best way is not iron supplements but liver.

Stinging Nettle LEAF, is a supplement that worked so much better for me than iron pills ever did, though.

Now, I want to get my nutrients through nutrient dense foods, mostly pastured ruminant animals & organs.
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TX Lyme Mom
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Keebler,
Floradix with iron and herbs is a liquid formula which was recommended to our daughter by her doctor when she tested anemic several years ago. There is a special gluten-free formula if you need that version of it. Just one 17 oz. bottle was enough to get her iron level back up into the normal range again.

https://www.amazon.com/Salus-Haus-Floradix-Iron-Herbs-17/dp/B0010EI0CA?th=1

I can't remember the cause of why she had gotten so run down because it's been too long ago, but just a bad season of colds and flu and sinus infections can be enough to trigger mild anemia, especially when one's appetite is affected so that you quit eating well.

This liquid form of iron doesn't have any unpleasant side effects, as do many other forms of supplemental iron pills. It was a cost-effective and easy way for her to start feeling better again rather quickly.

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Keebler
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TX Lyme Mom,

Thanks for the reminder of FLORADIX. Yes, it's wonderful. I'd forgotten about it. I used it years ago and felt so much better.

As you point out, this liquid form is much better tolerated than pills mostly due to the sources used and the easier absorption. Important, too, that you note the need to get a GLUTEN FREE version as many of their formulas include wheat.

Beef (other ruminant) liver is still a very important source - with a different kind of iron and other nutrients, too, but it's hard to find.

The source I just found, from Dr. Berg's videos, I got an order two weeks ago and it's all very well done.

https://grasslandbeef.com/

Grassland Meats / US Wellness in Canton, MO. -
Grass-Fed & Finished / pastured meats, etc.

look up both liver, various kinds offered

& liverwurst . . . & braunschweiger (it's milder).

No sugar or additives. Just a few mild spices.
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