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.

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:

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.

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.

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. 

Non-Profit Organization Update: How To Get Involved

I have mentioned on this blog before that I am co-founding a new Non- Profit.  Some things have changed that I wanted to disclose and update you all on.

HISTORY OF THIS PROJECT:
Back in November or so, I had started putting together thoughts and ideas for a new Non-Profit Organization (NPO) that would help improve the situation across Virginia, the DC area, and MD.  I had big ideas about how to help people avoid what I have gone though for the last 10 years, but knew I could not do it alone, especially from a bed on a laptop.  Part of my vision was uniting all the bloggers and organizations into one happy Dysautonomia awareness family, because everything seems very disjointed and fractured.  Well, Team Fight POTS was birthed out of that, and it has been great to work with other bloggers and activists, and hopefully we have helped people along the way.  Unfortunately, after reaching out to a few non-profits, not many actual organizations are willing to work together it turns out.  Bloggers and frustrated patients, yes - organizations, no.  So I decided I would start my own.


I began with this blog, and Team Fight POTS came shortly after, and in the process met a few folks with the same idea.  Originally we tried to work with an existing NPO, but eventually decided to work together on a completely new NPO, Dysautonomia International, which I have mentioned on here before.   

Unfortunately, after lots of hard work and many hours, I resigned and am no longer working with the group Dysautonomia International for a variety of reasons. We have some irresolvable differing issues and ideas about how to best achieve our goals, and I actually am going back to focusing on VA, DC, and MD.  The situation here for dysautonomia patients is BAD, and there is a massive lack of resources and public knowledge.  That needs to change.  That can not be done with a blog alone.

We already have an amazing group of people to get things started (or continued, actually), and we are filing paperwork and finalizing our web content and team.  More details will follow as they evolve.  My goal has always been to educate educate educate - and empower patients to improve their lives.  


So the new non-profit will be called.....drum roll please........

Dysautonomia SOS: Searching Out Solutions 

The NPO will focus on improving local resources, but will also provide (many free) materials for anyone anywhere with dysautonomia.  Our focus will be on the Orthostatic Intolerance disorders: POTS, NMS/NMH, OI, and OH.  We will provide basic info on the others.  We have BIG PLANS for our region, and helping patients get the treatment they deserve, access to the resources they need, increasing awareness, and raising funds for research.   AND FINDING YOUR POTS CAUSE! We hope to work in conjunction with a nationally focused NPO, and we'll see what happens, and few things are in the works.

We have a great group of volunteers and medical advisers, but are looking for more help.  We are 100% volunteer run, and applying for 501(c)(3) tax exempt status.  We are laying out clear cut ideas and goals so that everyone that volunteers knows where we stand and what we want to achieve.  They include (but are in no way limited to):

• Focusing on POTS, Syncopal disorders (NMS/NMH, OI, OH), Autonomic Neuropathy, and finding the underlying causes of these disorders.   Providing information of the other forms of dysautonomia and links to resources,
• Empowering and educating patients, caregivers, medical professionals, and the public by providing credible, medically reviewed educational materials and solutions for everyday life, available for FREE to everyone online,

• Providing free brochures and access to these materials in doctor’s offices, hospitals, schools, and other applicable public places across the VA/DC/MD region (you will be able to order these materials to print and distribute in your own region outside VA/DC/MD as well), thus increasing public awareness, decreasing diagnosis time, and improving treatment options for dysautonomia patients,

• Funding research, fellowships, new autonomic equipment, and projects that directly impact and improve the lives of patients in VA/DC/MD, &

• Working together with the medical community , other organizations, and public to provide support and improve the quality of the lives of dysautonomia patients in our region and around the world.

If you are interested in volunteering, even a small amount of time - please email me for a list of positions and needs we have right now, or if you want to receive updates and info on volunteering as it becomes available.  And you don't have to be in VA/DC/MD or know about Dysauutonmia to get involved!   I still hope to work with the other organizations out there, I really feel like we are such a large patient population, and we need to unite to get things done, especially regarding awareness and research.

This may be wishful thinking, but who knows?

If you would like to apply to be on our Medical Advisory Committee or Board, please email Claire at dysautonomiaSOS@gmail.com.  Volunteers do not need to be located in VA/DC/MD, as we will be providing services that aim to help and are available to EVERYONE.  

Thanks!
Claire

Fainting: The Final Frontier ( and Neurally Mediated Syncope)

Fainting. 
The final frontier. 
These are the voyages of the vertically impared, set out to reach new heights of embarassment - flashing panties and falling where no one has fallen before. 

(Dooo-do-do-do-duh-duh-dum dhuuuduum!) <----That was Star Trek Next Generation music/refernece for those of you that happen to not be nerds.

So lets talk fainting.  I have been writing furiously for the new Non-Profit I am helping co-found (Dysautonomia International - website coming soon!), and by far the most difficult subject to summarize into a consise, easy to understand format was syncope and NMS (neurally mediated syncope).

So, here is a brief run down on fainting and fainting related dysautonomia disorders.

Syncope = Fainting = Passing out.  This means you have lost consciousness, or have come close and have gotten horizontal in time to prevent the actual faint, otherwise known as "pre-syncope."  This happens because there is not enough blood in your brain.  Many perfectly healthy peeople faint during their life time, and it is a one or two time event - and they have no other health issues causing it or as a result.  Or - it can be a sign of something serious.  There are many types of fainting, the most common being vasovagal, or reflex fainting.

Save the Drama for Your Mama (and the Grinch)

I am fairly new to the Facebook online support community for Dysautonomia and POTS.

This has nothing to do with this post. But I like it.

I have been a member of DINET for years, but stayed away when I was feeling well - it had become depressing and was scaring me that I would end up like others on the forum (ironic, since I now am!).  But the forum was always kind, safe, supportive, and closely monitored - and I feel the people on there are super nice and not the types to attack others who have differing views.  Nothing has changed, if you are looking for smart people to help you navigate resources and deal with dysautonomia, you should check out the forum.  I became active again (it had been so long I had to re-register!) while half dead after all my pulmonary embolisms and in the hospital in early 2011.  I'm glad I did, and I still am on there a few times a week reading and sometimes posting, because it is such a great place to find support.

After getting out the hospital last fall and becoming a Twitter fanatic, and realizing that I was not going to be out running marathons any time soon, I found a whole support network of tweeps as well.   This is another valuable resource for chronically ill of any kind, just pick your disease and search it, and loads of people and tweets come up.  I use #POTS, #Dysautonmia, #spoonie, and #chronicallyawesome the most.

Finding Your Cause: The Project (need your help!)

I am on a "Find your POTS cause" crusade, which I think actually applies to Dysautonomia in general as well.  I have a plan for compiling a large printable sourced guide that you (and I!) can hopefully use to try and navigate the diagnosis process and make it a bit easier.


So this will be a multi- part process, and I need your help!

• Part 1 was explaining the need for this, exploring the definition(s) of POTS, and getting a starting point collection of known causes of POTS together with medical journal sources and citations, and I have received awesome feedback with suggestions for additions to the post: What Is Causing Your POTS? And Why It IS A BIG DEAL: A Printable, Sourced Guide

 

• Part 2 will involve adding the appropriate testing for all the causes listed in part 1, and separating this into a new printable guide.  If you are up to helping on this, please contact me!
  
  
  
  

• Part 3 will involve personal stories of people living with these diseases, causes, and issues related to POTS.  I'd like to feature a brief (or long if you prefer) write up on a persons journey to getting their cause diagnosis.   PLEASE CONTACT ME TO IF YOU'D LIKE YOUR STORY FEATURED!  Stories of success and hope are needed as well! 

   

  Thanks everyone, and much of this will hopefully transition over to the new Non Profit I am founding, Dysautonomia SOS.   More details on that coming soon.  Lots of work going on behind the scenes, very exciting stuff!

  ---Claire

 

Hopeful Dysautonomia Video from Lette!

This is Lette from Irish Dysautonomia....and I LOVE THIS VIDEO!  There is hope for everyone, and some very wise advise in this video, watch the whole thing if you are up for it!





I have had periods of remission as well; and know that food, physical activity, and not becoming depressed by living on the support group boards are all important factors in improving quality of life. Remissions and recovery DO HAPPEN! What has helped me currently in my yucky state of full on POTS/Dysautonomia is trying to help others empower and educate themselves (and myself), and finding BALANCE. Wishing you all a HOPEFUL day! --Claire

What Is Causing Your POTS? And Why It IS A BIG DEAL: A Printable, Sourced Guide.

Many of us hear by our doctors that POTS is "no big deal." 

Or they just plain have no clue what it is.  

Or, "you just have POTS."

Why do they think this?  Why don't they know what it is?  If an estimated million people have it, and even more have dysautonomia in some form, why don't they know?

As  patients (and hopefully the caregivers that see how sick we can be on a day to day basis), we know how big of a deal it is.  We know what a struggle POTS is, and how unpredictable and disabling it can be, even if it is generally mild and flares occasionally.   So why is this the view by so many in the medical profession, and why is it so unheard of?   I have been contemplating and compiling this list for a while now, and in light of the people we have lost recently in the POTS community, I thought this may be useful for those of us trying to find the cause of our POTS.  Also to explore why it is a big deal, even if POTS per say will not kill you, and why, in my opinion, it is absolutely necessary to find out what is causing your POTS.  Not only to rule out the really dangerous stuff, but to avoid the medication merry-go-round, as I like to call it.