Wednesday, May 28, 2014

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:

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:

4. Liegner K (2012) Valley views: Major initiative needed to fight tick-borne infections. Poughkeepsie Journal, August 21, 2012. Available:

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! 

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

7. 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

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. 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)
-Lupus and almost all autoimmune conditions, since auto-antiboodies can be produced as a result of Lyme, mimicking many things
-other secondary dysautonomias
-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:
~I have been told Stoney Brook has a good Western Blot as well, and is better received by skeptical doctors:
~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):

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!  

Sunday, January 19, 2014

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.

Monday, September 30, 2013

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!

Wednesday, September 11, 2013


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.

Tuesday, April 16, 2013

Taking a break...

Peace out homies (for a bit)
As you may have noticed, have not been posting here much. This has never been a narative blog, I've tried to keep it science based. That takes a lot of work, and for now, my limited energy and time spent of that type of writing will be devoted to Dysautonomia SOS.

Dysautonomia SOS is a nonprofit, with a board of directors, medical advosors, the works! I feel like I can affect more change via that platform at this point. My health has been declining unfortunately, with no treatment successes beyond IV fluids, so I have to pick and choose where my spoons go.

I'm going to leave STOP POTS up as a resource, BUT WILL NOT ANSWERING EMAIL. If you need support, please head to the Dysautonomia SOS page and contact via that website, or look through the many resources there. Much of what is on this blog (especially the "Find your POTS Cause stuff) is being formally rewritten for the nonprofit and will be up in the coming months.

Thank you for understanding! I hope this page continues to be of help to others!

Friday, January 18, 2013

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"


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


"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:

Monday, December 3, 2012

Tuesday, November 27, 2012

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!

***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.

Friday, November 23, 2012

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

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.

Here is Part 2 (featuring me!): 

POTS victim has hope despite limited activity

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.

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!

Friday, October 26, 2012

Dysautonomia Awareness Month Wrap Up Events!

Well, only a few days are left in the first ever Dysautonomia Awareness Month!  There is still a lot going on, we will end the month with a bang. Here is a quick break down of 2 cool remaining events.