Find Your POTS cause: Lyme Literature Round Up

As I posted earlier, after 11 years of being sick, 3+ of those REALLY sick, like non functional I-can't-take-care-of-my-kids-or-leave-the-house-and-am-in-a-wheelchair-and-bed-sick, I finally found out I have Lyme disease AND the lovely Bartonella (and probably as few others I'm being tested for). I finally started reading about Lyme, and reading the journal articles and history of this battle. It is summed up (the history of the battle/controversy/disease process) incredibly well in the book, which you should seriously consider reading.


The author was a science writer and highly skeptical of "chronic Lyme" and presents both sides, in what I found to be a very balanced and well researched way:

Cure Unknown (Revised Edition): Inside the Lyme Epidemic.



I am a Pinterest Junky. Unfortunately, journal articles on Pubmed don't work with Pinterst. So I am linking to a bunch of info here on Lyme Disease, and including some pictures purely for pinning purposes. I HATE the site of bug/ticks/etc... so these will be silly pictures! After, you can read me conjecture about how this relates to POTS/chronic illness if you like.

I'm going to do this backwards. Here are the sources for what I will write:

1. Lyme Disease: Call for a “Manhattan Project” to Combat the Epidemic, Raphael B. Stricker and Lorraine Johnson

2.  Cameron D, Gaito A, Harris N, et al. (2004) Evidence-based guidelines for the management of Lyme disease. Expert Rev Anti-Infect Ther 21 Suppl: S1–13.

3. TickNET: A survey of testing practices for Lyme disease by large commercial laboratories –United States, 2008. Presented at the 13th International Conference on Lyme Borreliosis and other Tick-Borne Diseases, Boston, MA, August 19, 2013. Available: http://www.poughkeepsiejournal.com/assets/pdf/BK211782914.pdf.

4. Liegner K (2012) Valley views: Major initiative needed to fight tick-borne infections. Poughkeepsie Journal, August 21, 2012. Available: http://www.poughkeepsiejournal.com/article/20120822/OPINION04/308220005/Valley-Views-Major-initiative-needed-fight-tick-borne-infections.

5. Evaluation of in-vitro antibiotic susceptibility of different morphological forms of Borrelia burgdorferi, Infect Drug Resist. 2011; 4: 97–113.Published online 2011 May 3. Eva Sapi,^{1 et al}

Pin-able picture break! 

<sup>6. Study Suggests Lyme Disease May Be Transmitted Sexually, The Journal of Investigative Medicine 2014;62:280-281

7.</sup> Issues in the Diagnosis and Treatment of Lyme Disease, Open Neurol J. 2012; 6: 140–145. 

8. Lyme disease diagnosis and treatment: lessons from the AIDS epidemic. Minerva Med. 2010 Dec;101(6):419-25.

9. Postural orthostatic tachycardia syndrome following Lyme disease. Cardiol J. 2011;18(1):63-6.

10.Complex regional pain syndrome and lyme borreliosis: two different diseases? Infection. 2002
 Dec;30(6):396-9.

Another random picture break! Take that Pinterest!

11. Severe orthostatic hypotension in a diabetic patient may not be due to diabetic autonomic neuropathy. Clin Med. 2011 Jun;11(3):290-1. (LYME FOUND)

12. Review of evidence for immune evasion and persistent infection in Lyme disease. Int J Gen Med. 2013; 6: 291–306.**** Excellent

13. Borrelia burgdorferi aggrecanase activity: more evidence for persistent infection in Lyme disease, Front Cell Infect Microbiol. 2013; 3: 40. 

14. Counterpoint: Long-Term Antibiotic Therapy Improves Persistent Symptoms Associated with Lyme Disease, , Clin Infect Dis. 2007 Jul 15;45(2):149-57. Epub 2007 Jun 5

15. Borrelia burgdorferi, Host-Derived Proteases, and the Blood-Brain Barrier Infect. Immun. February 2005 vol. 73 no. 2 1014-1022 

I think 15 is enough for now. I chose those because they are solid articles/links and also link out to even more sources if needed.

Some other Lyme resources/thoughts in case you are tossing around the idea that your mystery POTS/chronic illness could be caused by Lyme, or may be worse because of Lyme:

1. In my not-so-humble and un-expert opinion, if you have been bitten by a tick or had a mystery rash without a tick (but please remember,only an estimated 30-50% of Lyme folks ever had a rash, you CAN STILL HAVE LYME WITH NO BULLS EYE RASH), and have any kind of chronic illness, get tested just to rule it out. This is a no brainer to me! Especially since it is treatable. I DON NOT think everyone has Lyme. I have, however, read the science behind it now, and am no expert, but this is a big DUH to me if you have no clear etiology to your illness. The testing is not expensive and it's one more thing to cross off the list.


By the way - I have no clue why blogger will not let me un-italicize my writing at this point. I officially give up - the rest of this post will be in italics.

The list of diseases and conditions cause by Lyme is huge, and here is a snippet based on published journal articles/reviews:

-MS (recent Mayo estimates are 30-% of all MS patients have Lyme, there is an interesting ongoing study of spinal fluid of MS patients currently)
-POTS
-Fibro
-CFS/ME
-Lupus and almost all autoimmune conditions, since auto-antiboodies can be produced as a result of Lyme, mimicking many things
-other secondary dysautonomias
-Arthritis
-Autism
-ADHD
-PANDAS
-Alzheimers  
-Mitochondrial Disease
-Mast Cell Diseases
-Endocrine diseases (Additions, Cushings, etc..)
-the list goes on.........! Lyme is called "the great imitator" for good reason.

Pinnable random picture: Unicorn rainbow IV fluids (thanks Dedee!):

2. Where to get tested:

~Igenex is said to have the best Western Blot, in terms of sensitivity. They are licenced and accredited and have all the other legit qualifications, even in the tough states such as NY and CA: http://www.igenex.com/Website/
~I have been told Stoney Brook has a good Western Blot as well, and is better received by skeptical doctors: http://medicine.stonybrookmedicine.edu/pathology/tick
~You can now get an actual culture done through Advanced Laboratories, though met with resistance from the CDC, even though the possible contamination issues have been debunked by scientists (I'll provide more info on that later): http://www.advanced-lab.com/


Part 2 of this will have snarky commentary and a review of these articles and an explanation in my unqualified terms about the current state of Lyme/Co-Infections. 

Happy reading/Pinning!  
-Claire 

Found My POTS Cause. Probably. But Finally.

This is going to be a long one, just warning you. It only took 11 years, but we have finally found what is most likely causing my POTS. *highkick!*

I have not written on here in a LOOOOONG time. Like really written. I just haven't had it in me. Most of you that have read through this blog know that my goal was to make sense of this POTS and dysautonomia junk, and encourage folks to find their cause - because 90% of POTS is secondary, and frankly, most doctors just brush it off as no big deal. There are only band-aide medications, you can't really get well unless the cause is found if you happen to fairly debilitated by it. And even then there is no guarantee - but SOMETHING is causing your POTS, and if it's someting serious, YOU NEED TO KNOW.

What's ironic about this timing is that after having a port removed the day before Thanksgiving

because it had gone horribly, terribly wrong (clots, nerve damage, clogged, blah blah blah, etc...), I decided to take a break. I rescheduled all my appointments well into 2014 to take a few months off, because I AM TIRED OF THIS CRAP. 2012 and 2013 were spent on a wild goose chase after an admission where the inpatient physical therapy program actually discharged me, citing that I obviously had an underlying medical condition that needed addressed, and they were alarmed at my blood work.

Dysautonomia Awareness Month 2013

In case you hadn't heard - it's unofficially Dysautonomia Awareness Month in October - which is this week! Here are a few links and graphics from Dysautonomia SOS you can share to spread the word:

Sized for Facebook and Instagram.

General flier.

Sized to be a profile pic on Facebook.

I love all my POTSies :)

Humor is the best weapon sometimes!

See? Humor. Win.

This is sized to be a Facebook header.

Happy October!!!! Let's spread the word homies!
---Claire

POST REWIND: Choose to be VISIBLE

First trip out in the new power chair.

I wrote this a little over a year ago and nothing has changed in my opinion of ditching the term "invisible illness". When I see your pictures - I see you are ill. If you are trying to "pretend" to look normal, you can't expect anyone to know you are sick, and that is fine. BUT- it's time to put the shame aside, start talking more, and educate people about what's wrong. Ditch the stigma. It starts with us. If we cling to this term, it continues to keep those illnesses invisible. And if you need to hide your illness (for work, kids, etc...) don't expect people will magically know you are sick. You can read more about my thoughts on this below.

Anniversaries, POTS Perspectives, Suggestions and Such

I have not written a post in a long time, since we have been furiously working on the Dysautonomia SOS website.  I also have been doing a few "normal" things and living life a bit.


BUT! Last month marks two big health anniversaries for me - it has now been 10 years since my first POTS episode in the Florida Keys, and 2 years since I became completely disabled by it. At least they both happened in the same month, right? So I can think about both, reflect, yadda yadda yadda, and move on. Having to do this twice would have been annoying.

So ten years. Did I think this would be going on for a decade? NOPE. But it has.

Unless you are super lucky and see an amazing doctor when you first get sick with this, like the one's on our Advisory Committee, when diagnosed, patients usually hear one of three things:

"Oh, POTS is no big deal, you'll grow out of it"

~or~

"I have no clue how to treat this, NEXT"

~or~

"It's just anxiety, take some Zoloft"

I have heard all of these. The only one that has been true is the second. I actually appreciate when a physician admits they don't know what to do with me, instead of making something up. Up until I was super-dooper sick two years ago, I heard all three regularly. It took me almost dying and being in the hospital for 9 months to be taken seriously.

And now, 2 years have passed. So what has changed? Well - since being released from the prison, I mean hospital - I definitely have improved. But not because of any new drugs. And not quickly. The things that jump started me getting up and moving a bit have been three fold:

It's here! Dysautonomia SOS's Website is FINALLY Here!

YAY! The Dysautonomia SOS site is up and running. 

Here are a few sneak peak pictures. I will be back blogging more actively now, looking forward to it!

Thanks to everyone that helped make this a success! 
--Claire

Find Others! Join The Dysautonomia Social Media Directory!

Let’s connect online! Add yourself to our interactive map and find others online and in your area. You can upload pictures, online contact info, blogs, websites, and more!
https://www.zeemaps.com/map?group=460425#

***Under “Additions” menu, click on either the simple or detailed add form. You can select to be added as a patient, spouse, parent, or family/friend.
THANKS!
https://www.zeemaps.com/map?group=460425#

POTS in the news!

Recently, there was a two part series about POTS that was very well written, and included the stories of the son of one of Dysautonomia SOS's volunteer's, and myself!

Here is a link to Part 1, which includes great info about POTS, and the story of John, a teen battling POTS with an amazing attitude:

Is it depression, anxiety or POTS? The first article of a two-part series

Local Life November 13, 2012 4 Comments and 1 Reaction

John Point

by Sue Ann Rybak
John Point, of Chestnut Hill, was a typical kid who loved hanging out with his friends on the basketball court.
But in the Summer of 2009 he started to have flu-like symptoms: aches, fatigue, headaches.
“John was on the cusp of turning 13 and had really started to grow a bunch,” Janet Point, his mother said.
At first his parents and the doctors thought he had mononucleosis. But after a battery of tests, including CAT scans, an electrocardiogram (EKG) and allergy tests, and a heavy dose of antibiotics, the doctors could find nothing wrong with him.
“Somewhere around the third or fourth test for mono, the doctor said, ‘Well maybe he’s just making this up,’” Janet said. “I thought, ‘I don’t think he has invented this.’”
“You just couldn’t get John out of bed in the morning using proper or improper motivational techniques,” said Steve Point, his father. “Yelling at him and dragging him out of bed didn’t work. But, he didn’t seem like he was so sick that he couldn’t get out of bed.”
Finally, desperate to find an answer, John’s Dad sent out emails to members of the Chestnut Hill Sports Club.
“There is a giant email address list that goes around and there are a number of physicians on the list,” Steve said. “So, I thought maybe someone can recommend a doctor at CHOP. (Children’s Hospital of Philadelphia), who specializes in weird diseases.”
Steve said someone recommended Dr. Mark Magnusson at CHOP, and he performed a “tilt-table test,” which is one of the techniques for detecting POTS (postural orthostatic tachycardia syndrome). During a tilt table test, a patient lies on a table that moves from a horizontal to a vertical position. Measurements of heart rate and blood pressure are taken while lying flat and then again at intervals while tilted upright. The optimal duration of tilt testing in patients suspected of having POTS is 40 minutes or until they faint, at which point the test is concluded.
It was February 2010 when Magnusson diagnosed John with POTS.
According to the National Institute of Neurological Disorders and Stroke, POTS is a condition in which an excessively reduced volume of blood returns to the heart after an individual stands up from a lying down position. The primary symptom is lightheadedness or fainting accompanied by a rapid increase in heartbeat of more than 30 beats a minute, or a heart rate that exceeds 120 beats a minute, within 10 minutes of rising.
READ MORE HERE

Here is Part 2 (featuring me!): 

POTS victim has hope despite limited activity

Local Life November 21, 2012 0 Comments and 1 Reaction

Claire Martin with her baby girl, Gabriella.

by Sue Ann Ryback
(The second of two articles)
Claire Martin, 34, founder of Dysautonomia SOS: Searching Out Solutions, knows first-hand the obstacles and challenges of living with POTS (postural orthostatic tachycardia syndrome).
The mother of two young children, Lukas, 4, and Gabriella, 14-months, Martin had her first POTS episode at 24 while studying marine biology in graduate school.
“I was setting up an underwater research site in the Keys,” Martin wrote in an email during her twelfth day in the hospital on Wednesday, Oct. 24, “when out of nowhere, I had an extreme bout of tachycardia and felt like I was going to faint for the first time.”
Martin’s primary symptoms at first were bouts of tachycardia, lightheadedness, and fainting.
In 2003, Martin was forced to drop out of graduate school because her symptoms increased in severity and frequency.
Martin, who was studying sponge ecology and growth rate studies in the Keys said, “I was having trouble functioning, and I definitely couldn’t scuba dive anymore to continue my research.”
Martin, who now lives in Virginia Beach, Va., said she was a very active child, teenager and young adult. While she doesn’t know the exact cause of her POTS, she suspects it could have been the result of a spinal fusion in 1999. But, she didn’t develop POTS symptoms until years later.
READ MORE HERE

_____________________________________________________________
We are very thankful to see POTS in the news, and especially for a reporter who takes the time to convey accurate information. While I don't see myself as a victim, more of a butt-kicker (so to speak), I am so grateful to have been featured in this!

I encourage you all to reach out to local newspapers! Dysautonomia SOS has a press guide that can help you have your loved one (or yourself) featured locally, and spread the word about POTS and Dysautonomia. This is a great tool for upcoming events, and to make this condition a household name. Contact us if you'd like help!

I'll be back writing more soon, we are in the final stages of editing the new website, which has been taking all of my energy. Love to you all!
Claire

Join the Social Media Dysautonomia Directory!

Hey folks!  Wondering where all those people are online that have dysautonomia? It can feel pretty lonely having a weird condition that no one has heard of, but supposedly a bunch of people actually have! We just have to find each other!

We created a directory you can register for, and include your various social media contact names and handles. You can include as much or as little as you like. We are dividing it up based on location. There will be a page in the new website devoted to this directory.

One of the goals of Dysautonomia SOS (and this blog) is to connect people, so they can share local resources and support. The online community can be a great resource for finding others.

To register, you can click THIS LINK, or fill out the form below:

Subscribe to our Social Media Dysautonomia Directory:

Welcome to the Social Media Dysautonomia Directory! Provide as much or as little info as you like, and find others online that deal with dysautonomia. We will not send emails or contact you with the info provided, this directory serves as a way to connect with people and find support online. As always, be careful to only list info you are comfortable having displayed publicly, and we are not responsible for any interaction on social media taking place. You can remove yourself from the directory anytime.

YOUR EMAIL ADDRESS WILL NOT BE DISPLAYED ON OUR WEBSITE.

* indicates required

Email Address *

Online Name *

City, State, Country

Website/Blog

Facebook Page/Profile

Twitter @ Name

Instagram Name

Tumblr Name

Other Social Media:

Diagnosis

_______________________________________________________

The Dysautonomia SOS website will be up and running in the next week! Blog posts will resume after that, I have been spending all my time/energy on the nonprofit website, but STOP POTS will remain active and full of the opinions I can't share on an official organization website. 

Oh, and the TWEET-A-THON is next weekend! DINET is on board as well, we are very excited to get #dysautonomia trending on Twitter! Here is a flier you can share where ever you want:

  

Love to you all, and thank you for the continued support!

Claire

POTS: The Basics

I'm re-upping this, as we are almost done with the new nonprofit website, and most of my new "material" will be headed over there.  This a POTS 101 type summary, hopefully easy to understand and useful :)  ---Claire

POTS: An Overview

Postural Tachycardia Syndrome

POTS: The Basics
Find links to in depth information and resources for POTSies at on our Dysautonomia SOS website (under construction).

POTS is short for Postural Orthostatic Tachycardia Syndrome.   It is referred to by some physicians and researchers as Postural Tachycardia Syndrome, or just Postural Tachycardia.  It is a type of Orthostatic Intolerance, and also a type of Dysautonomia.   Let’s break down what that name means:

Postural means relating to posture, or a change in position.

Orthostatic means relating to, or caused by erect posture (standing up).

Tachycardia refers to a rapid heart rate.

Syndrome means a collection of symptoms, and not a disease. Technically, a syndrome is defined as a group of signs and symptoms that occur together and characterize a particular abnormality.

So, POTS is a collection of symptoms that result from a heart rate increase when standing up.  When a person with POTS stands up, the heart pumps faster to help keep the blood pressure up, and try to help the blood in their body reach their brain and other vital organs.  The body of a person with POTS does not respond to gravity the same way a non-POTS person does. 


The majority of POTS patients are female, of child bearing age, and under 35.  There are thought to be anywhere from 500,000 to millions of people in the US with POTS and other forms of Orthostatic Intolerance.   There are no solid published statistics or data at this time, these are estimates from the major research centers that treat POTS.

October Is Global Dysautonomia Awareness Month!

And of course we now have tee shirts!  In men, women, and kids styles:

FIND YOUR POTS CAUSE: Mitochondrial Disease 101 (Guest Post by Hannah!)

Global Mito Awareness Week is September 16-22.  Mito can cause POTS symptoms, and other types of autonomic dysfunction.

"Mitochondrial cytopathies are a diverse group of inherited and acquired disorders that result in inadequate energy production. They can be caused by inheritable genetic mutations, acquired somatic mutations, exposure to toxins (including some prescription medications), and the aging process itself." (1)

 

I'm very excited to have an amazing POTSy teen that I met and have gotten to know a bit through Facebook offer to write about her probable POTS cause, Mitochondrial Disease. Her name is Hannah, and she just started her Freshman year at UNC Chapel Hill. She is one of the most well spoken and knowledgeable teens, let alone people, I have met - especially regarding her health conditions. She is always willing to answer questions and help others navigate a very confusing set of diseases.  She developed POTS as a young teen, but then her symptoms changed and became more severe, and she was given a tentative Mito diagnosis after numerous positive tests and working with both Mito and POTS specialists.  

MITOCHONDRIAL DISEASE 101

by Hannah

The mitochondria are the “power-plants” of the cell—they provide most of the energy a cell needs to function. There are mitochondria in every single cell except for red blood cells. Mitochondrial disease, or ‘mito’ is a genetic and generally progressive problem with the mitochondria. (There is also a concept of “mitochondrial dysfunction”, where there is no gene mutation but the mitochondria don’t work well because of some outside force, such as certain medications or diseases.) The spectrum of severity of mitochondrial disease varies widely, from a baby with Leigh’s Disease who passes away before his first birthday, to the very serious MNGIE, to a woman who gets excessively fatigued and weak as she ages.

Cells have multiple mitochondrian that power the cell through by converting ADP to ATP.

Hydration, Salt, and Peeing: The Renin-Angiotensin-Aldosterone System

I guess I should use the technical name for peeing in this title - urination - but it's a catchier to say pee.  Because that's what many of us POTS folks do (and various other forms of Dysautonomia), we pee A LOT.

Why is this?  And why the heck do we have to eat so much salt?  

Well, there is this thing called the

Renin-Angiotensin-Aldosterone System.

 

It's a big deal. It takes place mainly in your kidneys and adrenal cortex, and affects your blood pressure directly.  Lets break down the three components:

 

1. Renin is a protein (enzyme) released by special kidney cells when you have decreased salt (sodium levels) or low blood volume, and stimulates the formation of Angiotensin in blood and tissues. 

2. Angiotensin then undergoes a series of reactions that convert it to Angiotensin II (AII in the diagram below), which in turn stimulates the release of Aldosterone from the adrenal cortex. 

3. Aldosterone is the main mineralocorticoid (steroid hormones that balance electrolytes) hormone secreted by the adrenal cortex, the principal biological activity of which is the regulation of electrolyte and water balance by promoting the retention of sodium (and, therefore, of water) and the excretion of potassium.  In plain English - Aldosterone helps your kidneys retain salt, and therefor retain fluids, helping to keep blood volume and blood pressure up.

Here is a diagram of the entire system.  

Choose to be Chronically VISIBLE

Alrighty.  Time for an Op-ed.   It may tick some people off. 

I see much posting going on regarding INVISIBLE ILLNESS and spreading awareness by promoting the idea of an illness being invisible.  This term has always bothered me, as I have mentioned before on this blog.  It has the ring of victim/helplessness to me, and I tend to like things that are assertive, proponents for change, and action oriented.


I think the problem here is two fold:
1.  There is no invisible illness, JUST IGNORANCE.  What illness is truly visible?  There are very few compared to vast majority of illnesses, diseases, and conditions that people suffer in silence and try to hide - or that do not cause them to look deformed or like the traditional notion of "ill."  And that traditional notion of illness is what needs to change. By continuing to use the term invisible illness, we are separating ourselves from other people that "look sick," and in my opinion, making the problem worse. 

2.  People find their identity in the "invisible illness" movement, and use it as something to hide behind.  NOT EVERYONE.  I know that is probably not most people's conscious intention.  Many are looking to find a way to spread awareness, which I commend.  But is this how any of us want to be known?  As invisible?  Is this the best way to spread awareness? 

What society sees are deformities and stereotypes.  Not illness.  They see something out of the ordinary and recognize something is "not right" with that person.  This actually has nothing to do with if they are "ill" in some cases.   Is an amputee ill?  Maybe.  Or maybe they are missing a leg, but otherwise are perfectly healthy, and do triathlons.  This is a problem with society, not with those of us who are chronically ill, and we need to address those stereotypes if anything is going to change.   We need to speak about our conditions by NAMING THEM, and being visible, not promoting an image that quite frankly can be a bit whiny sounding at times.

Bye Bye Bella Flora: Parenting From A Bed; Grief, Guilt, & Gratefullnes...

A post from my personal blog:

Bye Bye Bella Flora: Parenting From A Bed; Grief, Guilt, & Gratefullnes...: My daughter is 11 months old today.  She is a  gorgeous, bright, happy baby - granted who doesn't sleep very well - but she is such a joy ...

Find Your POTS Cause: The Wide World of Mast Cells (Sourced)

The proposed relationship between POTS and MCAD.

MCAD and Mastocytosis are a confusing set of diseases and conditions.  What aren't  these days?   I'd like to post about a nice, simple, straight forward and easy to understand condition for once, but alas, MCAD is exactly the opposite.


 What are Mast Cells?

Mast cells are cells of the immune system that are found around blood vessels in the skin, gastrointestinal tract, respiratory tract, and genitourinary tract, and are highly associated with nerves. They release chemicals including histamine that are very irritating and cause itching, swelling, and fluid leakage from cells.

"Mast cells are known to be the primary responders in allergic reactions, orchestrating strong responses to minute amounts of allergens. Several recent observations indicate that they may also have a key role in coordinating the early phases of autoimmune diseases, particularly those involving auto-antibodies."

What is MCAD?
As desribed technically, "Mast cell activation disease comprises disorders characterized by accumulation of genetically altered mast cells and/or abnormal release of these cells' mediators, affecting functions in potentially every organ system, often without causing abnormalities in routine laboratory or radiologic testing. In most cases of mast cell activation disease, diagnosis is possible by relatively non-invasive investigation. Effective therapy often consists simply of antihistamines and mast cell membrane-stabilising compounds supplemented with medications targeted at specific symptoms and complications. Mast cell activation disease is now appreciated to likely be considerably prevalent and thus should be considered routinely in the differential diagnosis of patients with chronic multisystem polymorbidity or patients in whom a definitively diagnosed major illness does not well account for the entirety of the patient's presentation."

What does that mean?  In simpler terms - MCAD is a collection of hard to diagnose (because they often don't show up in standard blood work) conditions related to "mast cells behaving badly."  Mast cells are almost everywhere in the body.  When they break down, it is called degranulation, and in MCAD the mast cells do this in a seemingly random way; releasing histamine that the body reacts to, causing all kinds of skin reactions, anaphylaxis (throat closing/itching/blood pressure drops, etc...), and even causing heart rate fluctuations and shortness of breath in some.

MCAD is also called MCA, or MCAS (the "S" stands for syndrome), and the current definitions by the WHO (World Health Organization) are being debated.  Currently because of the WHO definitions of MCAD, it is very hard to get a solid diagnosis, and it is an under-diagnosed and misunderstood condition by many physicians. 

Pregnancy and POTS: Experiences & Resources PART 2

In PART 1 of this mini-series, we discussed my first (excellent) POTS pregnancy and the data published regarding having healthy children when you have POTS.  Now on to the tough part of this, as my second pregnancy was a nightmare.  So here's an oversimplified version of what happened, and I'm including some thoughts and links regarding medications at the end.

The Second (NIGHTMARE) POTS Pregnancy:

In December of 2010, I knew something was wrong.  I had been functioning most days for the last few years since my son was born, with fluctuating symptoms that I had been trying to hide from business related folks, and had given up fixing with doctors.  But they were tolerable - episodes of tachycardia, light-headedness, chronic pain and fatigue after working long hours, and severe hypoglycemia.

I was suddenly feeling like I was going drop, and spinning, and my heart rate was nuts.  I was also not retaining any fluids, no matter how much salt loading and drinking I did.  Then I found out I was pregnant right after Christmas, and everything changed.  Within a week, I was sick, bed bound, and knew something was severely wrong. The first week of January was my first trip to the ER after blacking out when I stood up too fast to grab my son (who decided climbing on a counter top was a good idea!), and I couldn't get my heart rate under control after, even laying flat.  This is also when a month+ of vertigo began.  Horrendous vertigo, like I had never before experienced.  

The month of January I was back and forth to the ER and was admitted multiple times.  Then in early Feb I was sent to a rehad/nursing center because I needed constant monitoring, continuous IV fluids, and had a PICC line placed.  Only once the IV fluids were upped did I start to see improvements with the vertigo.  Unfortunately, my PICC line was not cared for, and I developed massive blood clots along the line that were ignored by the staff at the nursing home.  We had to threaten legal action to get me medically released, as the doctor at that horrible place blew me off and thought I was having muscle pain - and was massaging Aspercreme into my clotted area (nice).

After coming home, my nurse was appalled at what I told her and saw the state of my PICC line and sent me to the ER.  We found out I had 5 DVT's and my jugular was completely clotted off. I hadn't been able to turn my neck for days, and they had been rubbing my clotted area at the nursing home, and the clots had broken off and started migrating to various dangerous locations.  I was admitted again to the hospital, but was still blown off when I complained of extreme chest pain and difficulty breathing, and told "it's just your POTS" and sent home after a week.  Well - it was not just my POTS - it was over a dozen bilateral pulmonary embolisms (PE's), plus a 2 cm clot in my right atrium.  Turns out they had sent me home on the wrong dose of Lovanox (a blood thinner) and ignored my OB doctors demands for my clotting factor to be tested.  If I had not kept going back to the ER and demanding they do something or I was going to pull out that stupid PICC line myself, I would have died, along with the baby.  Being pregnant, bed-bound, and having a PICC line is the trifecta of blot clotting risks.  Add to that the fact that they finally tested me for clotting factor conditions, and I came out positive for the Factor V Leiden gene, so basically I was a clot waiting to happen.  It took me almost dying to get the treatment I needed, and even after that - it was a 9 month struggle and fight with the hospital and doctors around here.  That's why I advise people to have a plan in place and a support network of good doctors familiar with your brand of POTS.

Volunteer Positions for Dysautonomia SOS!

We are on our way!  Very excited about the amazing team we have forming for Dysautonomia SOS, the new Non Profit serving VA, DC, MD and beyond.  A formal announcement will be coming soon, but we still need help!  If you or any family/friends are intersted in volunteering, please contact us at dysautonomiaSOS@gmail.com.  Together, we can make a HUGE difference!

Dysautonomia SOS Volunteer Project List

Dysautonomia SOS is a new Non-Profit organization forming to better serve the VA/DC/MD area’s dysautonomia patients, as well as providing materials for everyone online.  We need your help to get up and running, and start improving the lives and treatment options for patients. 

If you are interested in any of the following projects, please email Claire at dysautonomiaSOS@gmail.com.   Please use the exact project name to identify what you are interested in.  Feel free to tell us about yourself so we can get to know you as well.  Patients, family, caregivers, and friends are all welcome to volunteer!  Thanks for your interest and support in making this a success!

Physician Listing Coordinators:  Update the physician listings for VA, DC, and MD.  We will need the name, specialty, facility name (if applicable), phone, email, and full address. We are looking to list anyone who treats and has experience with dysautonomia, including primary care/internal medicine doctors.   If you would like to research a specific region, let us know.

Content Editors:   Review materials for the newsletter, web content, brochures, scientific write-ups, and any other content to check for grammar, punctuation, and content accuracy.   

Science Writers and Advisors:  Looking for anyone with a scientific or medical background to help write educational materials for a variety of projects, and review materials periodically.

Newsletter and Feature Contributors:  We will need contributions for our newsletter and web features on a regular basis. Everything from patient stories, to regular columns related to living with Dysautonomia.  Parenting kids with POS, caregiver stories, diagnosis stories, treatment options that have worked for you, etc…

Sponsorship Coordinators:  Collect and research local/regional potential sponsor information.  Anyone providing services that pertain to dysautonomia, or any personal contacts with businesses that would be willing to be a sponsor need to be compiled and eventually contacted.  If you would like to research a specific region only, let us know.

Events/Fundraising Coordinator:  Oversee and aid with local and regional events.  Find creative ways to fundraise for the organizations projects and research we are supporting. Professional event experience preferred.

Accountant/Bookkeeper:  Someone with NPO  to prepare our annual report and help with bookkeeping.

Regional Support Group and Event Hosts:  VA/DC/MD is a large region!  If you would like to host an event or support group in your area, let us know.  Whether it be a Skype meeting, in person, or an official event, we will need as many people as possible helping with this.  

Social Media Coordinator:   Make sure all social media accounts are up to date and the latest news is being shared about our organization in a professional manor.   

Media Blast Brigade:  We need lots of “Re-Tweeters” and “Re-Posters” of important news and announcements across social media.  If you would like to updated on any new happenings or announcements that you can share with your network, send us an email and we’ll keep you posted (so you can re-post!).  This is a VERY important part of our awareness campaign!

General Volunteers:  We will always need volunteers!  Want to be notified when new projects and positions come available?  There a ton in the works.  Email us and we’ll keep you updated!