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.