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
So I have been crocheting, making jewelry and fairy garden miniatures (that's right!), and keeping my type-A mind occupied with other things like founding an organization to collect crochet/knit warm things for the homeless. I left all Facebook and other support groups, which has been wonderful. I'm in a few small ones with people I know, but my online experience is now filled with good friends, no drama, and a core group of lovely folks I can chat with when needed (Unicorn Rainbow Hobbit Sausage Power! You know who you are).
My three Etsy shops (shameless self promotion!):
Anyway - I went to all the appointments, made the rounds, and have been pushing through, never really feeling "chronically sick" in my head. I have healthy dreams. I am surfing, and snowboarding, and going to music festivals, and battling aliens (a lot!), and taking my kids out to do "normal" things. I stand up too fast constantly because in my mind I am still not sick. I accept and try to make the most of my situation, but have always felt in my gut that I will wake up well one day. It may not be true, but for whatever reason, it's in my head and I'm keeping it there.
I have been exhausted from all the sick stuff, and decided a long time ago I needed to not focus on or write about my health to maintain my sanity. I live with being very sick every day, and at this point it's been going on for so long, I'm just plain over it. I don't have "well days" any more, and haven't for a long time. I get a few "well hours" here and there, and then crash. It's now been 11 years of POTS and other "typical" chronic stuff in varying, but functional degrees, and the last 3 years of "sick as hell and homebound" - where I have spent over a year in the hospital, with nine months of that continuous.
So, here's a brief rundown: I am now in a power wheel chair because I can not push myself for more than 20-50 feet, my neuropathy has progressed alarmingly and dramatically with no explanation, and that crap hurts (or is numb!), my orthostatic issues have just gotten worse, and I have developed a bunch of new *mystery* neuro issues that landed me in the ER many times, including losing my vision, loss of use of various limbs, crazy pain and spasming issues, and with no answers after lots of testing and blank stares. My neutrophils and WBC count remain chronically high, I continue to battle blood clotting, found out I have a tiny aneurism in my carotid right behind MY FACE (but it's no big deal apparently), along with many wacky blood tests that come back for "non-specific inflammation or acute infection". LOTS of those results. All of them actually. Elevated C4, elevated sed rate, high IgE, wacky ALT and ALP, and many more things of that nature. My blood work shows that I have been battling something, just no one can figure out what. I continue to develop new food allergies - but they are not "true" allergies, and my GI symptoms are the worst they have been ever. My skin is seriously pissed off - I get rashes from the sun, flush constantly, have mystery hives and horrible dermatographism. I could keep going on, but you get the point. The list is long, but "non specific". Not sharing this as a woe-is-me pity party, because I don't want anyone's pity, but to give you context and in case anyone relates. The only nice thing, is there has been enough measurable weird stuff in my blood work that no one questions my sickness anymore, or implies it's anxiety. But that takes almost dying and deteriorating to this point. Nice!
I have had no answers from doctors, which I would have been ok with if I wasn't getting worse. If I was the way I was 3 years ago, and able to push through and function most days, I'd still be ignoring all but the emergent things (like blood clots and bad falls/faints). But I'm not. And the fact that there has been little to no urgency in helping me get better and doing whatever it damn well takes to find out what my body is obviously battling has left me feeling like the medical community as a whole is broken, and has failed me and my family time after time. I have had one or two doctors really make a truly valiant effort - but they hit a wall at a certain point, and have stopped trying and are just managing symptoms. All I hear from the over 20 specialists I now have locally, and at two other well regarded university hospital systems is, "something is wrong, but we don't know what and you need to go somewhere like the Mayo Clinic". Guess what? The Mayo Clinic is 14 hours away and I can't make an outpatient trip, and their neuro department recently rejected an outpatient appointment request anyways. I was told by their Internal Med people that I was "too sick for outpatient" and would need to be inpatient transferred. So my doctor tried the last time I was admitted in November during the port fiasco, but Mayo had no beds available, and won't take me as a direct admit because they are so full.
Well - screw that!
This is my health, my life that is passing by, my kids that don't get to have their Mommy outside the house with them, and even inside the house much of my time is spent recovering from a short burst of activity. My parents and husband basically devote most, if not all, of their energy to caring for me and my kids because I can't. AND THAT IS NOT OK. That is urgent, dammit, and if the doctors don't care enough, then I have to. Taking breaks is good - I highly recommend it to anyone that is burnt out, but then you have to get back on horse and keep searching. Again - the irony is that I did this final test on whim, while on a medical break, and it may well have changed everything!So here are the things I have been tested for and had ruled out, for those of you on this same quest to compare to (with links to conditions):
-No Primary Dysautonomias. Autonomic testing (QSART) shows I now have little to no sweat function in parts of my feet/calves/arms, and my last TTT was significantly worse than in 2012. I have patchy SFN all over my body.
-Autoimmune diseases ruled out, even though all the rheumy's I've seen say my body is inflamed, they just don't know what it causing it. I have had Raynaud's since I was a teen, and costochondritis (painful rib inflammation) since my early 20's, but that's it. My ANA's were slightly positive, but then negative again. And my C4 is high.
-MCAD testing came back negative, but again - some kind of inflammation or infection showed up, just not MCAD. We did the chilled testing panel recommended by Dr. Afrin. Only elevated IgE and C4. And WBCs, and ALP/ALT. The usual. But my allergies are crazy right now, so that is an ongoing mystery. I'm getting a full GI work up when I feel up to it and being tested for suspected eosinophilic gastroenteritis, which would explain a lot actually. Was told I have gastroparesis (duh), but it's mild/moderate and fluctuates.
-Cancers & blood diseases, as my neutrophils were alarming to everyone and I had to get a full work up with my hematologist, who told me it was secondary to an infectious or autoimmune process, and to go see other specialists, which I did
-Had a Labcorp Western Blot come back completely negative for Lyme, EBV(mono) come back for past infection and possible chronic (for doctors that believe in that), and the infectious doctor ordered some pretty fancy testing to see if these WBC's were hiding in a mystery cyst or internal injury somewhere, and the test came back normal. The basic infectious culture/labs came back normal.
-Went to see a wonderful geneticist group at UVA, and they did a panel for random unexplained fevers (which I get, along with a sore throat and swollen glands after activity), and it came back negative except for a single mutation for PAPA syndrome, which I don't have. But it's a gene associated with inflammation, but not obviously causal of anything. They told me the same thing - you have something inflammatory or infectious and need to see a clinician. They were very nice though.
-No EDS. Not even an issue to be tested for, I am completely un-bendy and have zero hallmarks of it, confirmed by geneticist.
-Was told my blood work and clinical stuff doesn't present for Mitochondrial disease by the geneticists as well.
-Had multiple MRI's over the past few years and no MS or central nervous system diseases, but have symptoms of them. My last C-spine looked good, except for possible increased spinal fluid, but my neuro was not concerned and said it looked like a lot, but not alarmingly so.
-I either have RSD/CRPS or possibly Erythromelalgia in my right arm and both hands after the port fiasco. That sucks.
-No Chiari or associated malformations.
-NOTHING. NOTHING. and more NOTHING. "Unspecified inflammation and signs of acute infection". That's it. I know I'm forgetting some of the tests, I have had so many, but that's the gist of it.
THEN.....dun dun dun.....
1. My blood work shows major, long term signs of infection and inflammation.
2. I worked professionally in tropical waters as a scuba diver and researcher while in grad school in the Keys, and was in numerous tanks with rescued dolphins, along with dissecting them (called a necropsy).
3. I had my firs tick bite at 12, and she personally pulled that sucker off my neck. This is in Northern Virginia, which is completely infested with Lyme disease. Funny enough, I came down with Mono not much later, and had no known exposure to it (I had not been kissing anyone or sharing drinks thank you very much).
4. I have been bitten numerous other times by ticks all over VA while playing sports and camping into my early 20's, when I moved here to VA Beach in 2000.
5. While in the Keys, I had some kind of mystery rash/infection from the water that landed me in the ER, and had my first POTS episode a few months later while back in the Keys.
6. She watched "Monsters Inside Me" on Animal Planet and was convinced I had some kind of parasite or infection. I kept saying, "no, no - I was tested, I saw an ID specialist" blah blah blah.
Well, I gave in and got the Igenex Lyme and Co-infection test just for the hell of it, to definitively put it to rest. I did a lot of reading. I knew there had been some controversy with the testing giving false positives, but learned that the articles by the New York times was retracted. I'm highly skeptical (not going to sugar coat it) of a lot of the treatments for Lyme I have read about and it all seemed a bit wacky to me.
Turns out they are a licensed, certified testing facility. Even in California and New York, the toughest states to be certified in. The test was actually cheaper out of pocket than most of the blood work I've had done over the last few years, and is partly covered by my insurance. So I took it. And guess what?
I have not just Lyme, but Bartonella henselae as well.
Why this is good, bad, and seriously interesting:
1. Bad: INSANE politics and controversy about Lyme disease, denial of the existence of "chronic" Lyme by the CDC and the panel of Infectious Disease docs that created the guidelines that the CDC follows. That panel is under investigation. On that panel, 9 out of 12 doctors had a financial stake in Lyme "patents" (you can patent organisms and DNA now, who'd have guessed) and vaccinations/treatments/etc... That is illegal. By law, panels of doctors cant have any vested interest in creating guidelines or financial ties that will affect the outcome. The CDC made an exception. Turns out they do this with many vaccinations as well. I suggest watching the award winning documentary "Under Our Skin" for a good overview of the political climate of Lyme.
2. Bad: Where to get credible info. Where to get credible testing. Where to get treatment!? Lyme doctors are hunted down by the CDC and state medical boards, so many are secretive and do not take insurance. Most infectious disease doctor deny the existence of chronic Lyme, but that is changing, because people are speaking up, finding treatment, and getting better with it. BUT - there are doctors out there that prey on desperate, chronically ill patients, which is true in any mystery illness world. BUT(again) - now there are also protected stated where doctors can treat Lyme without fear if they follow the State's guidelines.
3. Bad: There are no doctors within 4 hours of me that treat Lyme or will even talk to me about it. There is so much conflicting info out there! But I know people (multiple, many many people) who have treated their Lyme and gotten better. At this point, no one has any other suggestions, and after the hundreds of appointments and tests, and the thousands (more) of dollars it's cost, it's time to move forward with something, for me at least. If a doctor doesn't want to hear about, fine. They don't have to. I'm pretty much over the medical profession right now.
4. Bad: With Lyme and other infection treatment, many people get very sick once they start treatment before seeing improvements. This can last from weeks to months to years - it all depends on how sick you are, how infected you are, and everyone is just different and responds differently. This is the part that scares me. When you start trying to kill Lyme it releases toxins into your system, and can damage organs and cause seizures, and all kinds of stuff. Trying not to think about it. Bartonella does not cause Herx reactions thankfully, but Lyme does.
4. Good: I have a diagnosis! And there is the potential to get better. Like I mentioned, I know many people who treat their Lyme/Co-Infections and are better overall, and become functional again. It's kind of surreal. All the things that were in the running as causes of this before were life long, chronic debilitating conditions. And I have been sick for so long, I may have a few of those anyways. But the hope of seeing some improvement has me a bit numb and overwhelmed with hope at the same time.
5. Interesting: here is where I'm going to get geeky scientific on how this makes sense for my clinical presentation, history, and symptoms. I have been reading in depth about Bartonella henselae, on a cellular level involving the cytokine cascades and other farily amazing mechanisms of this organism. I'm just going to state what I've learned from my reading of medical journal articles and a very technical book by a well regarded doctor written for clinicians. Feel free to draw conclusions how ever you want, but for me, these pieces of info had major relevance in relationship to my POTS/OI, chronically high WBC, and many other symptoms.
- Bartonella infect endothelial cells - those are the cells lining the blood vessels. They actually stimulate the production of new endothelial cells, causing inflammation of the lining of the blood vessels. This lining controls what gets in and out of the vessels, as well as vasoconstriction and vasodilation. Hmmmmm.......
- Bartonella also hide in these pockets inside the cells called vacuoles.They hide from and adapt to your immune system (tricky bastards). They also release - simultaneously - a new bacteria load into the blood stream to infect any new endothelial cells and be available in the blood stream for critters that may come along and bite you/a mammal - thus continuing the bacterium's life cycle - EVERY 5 DAYS. Wowza.
- It's estimated that up to 25% of all mammalian populations carry Bartonella. With humans, it only presents symptoms and causes issues in the immune compromised - like a person with HIV/AIDS, or with other infections such as Lyme, or any immune compromising health condition.
- The two most affected mammal groups are deer and cetaceans (dolphins and whales). Guess who lived in tick infested deer land from 1985-2000? ME. And guess who was in tanks with dolphins multiple times for extended periods of time? ME. They are transmitted by all kinds of fleas, lice, ticks, etc...including water born species. ME. Scuba diving. A whole lot.
- Bartonella can cause cardiac, neurologic, liver, and all kinds of other issues/damage/symptoms.
- Bartonella is thought to be in 5-7% of the blood bank blood in the USA. This is especially troubling because the people receiving blood transfusions are sick, and susceptible to becoming sick from Bartonella. (random, but I found it troubling)
I hope this is helpful to someone! I'm meeting more and more people that are getting diagnosed, treated properly, and getting better with Lyme/Co-infections. They are getting their life back. If you have been bitten by anything and have POTS, please consider checking out the Igenex website and getting tested. Read up on the false negative/positive rates of other tests, and even the Igenex test. It was signed into law in my state of Virginia that doctors are required to inform patient that Lyme testing basically sucks. Which is crazy, as the fed only gives $25 million a year to Lyme research, when last year the CDC changed it's tune from 30,000 NEW people being infected to 300,000 NEW INFECTIONS. A YEAR. And rates are rising. That's a pretty big jump! I'm sure the promise of a money making vaccination on the horizon had nothing to do with it.
Anyway - here's info on the new law in VA:
"The bill Hugo helped sponsor will require any doctor’s office that orders a Lyme disease test to also inform that patient that the Centers for Disease Control and Prevention calls Lyme disease the sixth-fastest growing disease in the U.S.
The doctor or his office staff must also tell the patient that current lab testing for Lyme “can be problematic and standard laboratory tests often result in false negative and false positive results, and if done too early, you may not have produced enough antibodies to be considered positive.”
The doctor must advise patients that if they continue to have symptoms, they should check into re-testing or other treatment options." -Law Targets Lyme Disease
I was not told this. In fact, my ID doc told me people that went out and got tested and thought they had chronic Lyme were wacky and that it didn't exist. I sent him my results last week. We'll see what he says. I could keep writing, it's a huge complicated subject, but for now I'll get back to my yarn and jewelry making addictions :)
May the force be with you.
--Claire
*highkick*
This is so awesome Claire. May the force be with you! You so deserve a break and a treatment that works for you.
ReplyDeleteAs I was reading this. It brought back memories of long ago when I was a child and lived in Texas. I went on a camping trip with a friend and her family and of course we hiked thru the woods and found all sorts of dead deer, squirrles raccoons etc. I must have been about 10 or 11 i'm guessing. Well when I get home my mom helps me up pack starts throwing everything in the wash I get in the tub. Once in there and sitting down, I start screaming fro my moma. She came running and I am covered with these little black things all over my body.(ticks) She helps wash me and scrubs me as good as she could and takes me to the Air Base hospital in San Antonio. They confirmed they were ticks, I forget what type they were, but the two doctors told her to take me back home, but me back in a bath of olive oil and or vegatable , soak my hair with it and try to suffocate them. I thought my moma was going to scrub all the skin off my body. She kept me out of school if a remember for at least 3 days and continued to soak my head and me everyday to make sure there wasn't any hid anyway. Iam serious, they were in my ears, my private parts, under my arms everywhere.
So now your findings have me a little concerned. All of this happen about 40 years ago, but if I remember right, that is when I started fainted at the site of blood, when I would faint when I had pain at most any level. OMG, Could there be a connection?
Thanks Cindy! I have no clue - I just know what these bugs stay in your system and if you are immune compromised they can cause issues. Can't hurt to rule it out, especially if you had such an extreme exposure! xoxo
ReplyDeleteHello Claire, so happy that you found out your cause! I posted a comment a couple of days ago on the page on Hyperandrenergic POTS and Decoding as to whether or not you found the website that that is from but I never got a reply ~ would you please post me the link if you found it along with the symptom list for Hyper POTS? I have searched & searched but can't find it ~ any help is appreciated and thank you!
ReplyDeleteHey, my daughter just came back from two weeks at Mayo - she has POTS, but also had issues in her gut that were repaired beautifully by a combination of an antibiotic called Xifaxan, which had to be taken with a specific probiotic, Saccharomyces boulardii. Also very important is the low FODMAPS diet. Worth a try, anyway. My daughter had non-genetic mito issues, took massive doses of CoQ10, L-arginine, L-carnitine, Glycene, vitamin e, and had to have coffee enemas every day because when you take supplements, you detox, and that has to get cleaned from your liver or you can get even more sick. Coffee enemas do that. Cleared up after several months. Most important thing w/ POTS we are told is exercise, which is also the hardest when you are bedridden-sick. Best of luck to you, hope some of this info helps.
ReplyDeleteHow are things going with your treatment?
ReplyDeleteHi there! I see this was quite a few months ago and you may have found helpful treatment by now, but if not you could look into the doctors who trained with Dr. Shoemaker from survivingmold.com that treat biotoxins and lymes disease. I have just discovered my POTS (and everything else) has been caused by a biotoxin mold illness that my mother also had and is cured from. Good luck to you. :)
ReplyDeleteSorry for posting this here. Did a google search of your site and came up with no results matching the subject discussed below ... thought maybe it could be of use, if not to you then to some others who don't yet know why they have POTS.
ReplyDeleteAnyhoo, just wanted to share something that has greatly improved my POTS: megadoses of thiamine (B1), roughly 300 mg of TTFD and 500 mg of thiamine mononitrate daily (no known overdose level for thiamine exists). This seems to require additional magnesium and riboflavin to avoid "paradoxical" effects. I did not expect any improvement in my POTS -- was using it for its effects on the neurotransmitter acetylcholine -- but after a few days I noticed something was "different" while standing up, so I got my pulse oximeter out and, for the first time in over , my heart rate dropped below 90 while standing (in fact, it was down to the high 60's)!! I should note my POTS is not "severe", merely 55 lying down to 90-100 standing, and my main symptoms are moderate exercise intolerance, brain fog, weakness, and internal organ pain (liver / kidney) when I sit upright too long. It's not necessarily finding the cause, but I'll take what I can get.
I hope this might help someone else. You can also check out the work of Derrick Lonsdale, MD in particular regarding post-Gardasil (HPV vaccine) POTS. He has a few slightly outlandish ideas, but you can't argue with his amazing results.
Also, if you do see this, Claire, thanks for this blog. It has been partially responsible for me basically giving up on doctors, which, LOL, as silly as it sounds, has been the best thing for my health in years. Unlike you I don't have a family or any particular passion to keep me plugging along in spite of my health problems, so I might as well focus on fixing them, right?
-Steve