Jun 30, 2011

My Saline Therapy Update

So I've been using my chest port for daily IV saline therapy for several months now.  Thankfully, I have not had any problems with the chest port.  My insurance company is still covering everything without any problems (thankfully!) and I am feeling better than I have in the whole year and a half I've been sick (thankfully!).  I still have plenty of "bad" days, but the symptoms on those bad days are caused by my neuropathy, not by my low blood volume.

Overall, I am so happy I discovered IV saline as a treatment for my POTS and I am really grateful for my doctor who let me try it.  I can't speak for her, but I think she is also happy to see the results of how much better I am doing since we started it earlier this year.

If you read my earlier posts on Saline Therapy, you may recall that my doctor and I have been able to objectively document a significant improvement of my low blood pressure and my tachycardia since I started getting 1 liter of .9% sodium chloride, 5% dextrose, saline per day.  Subjectively, I also notice that I am no longer getting those shaky/jittery/anxious sensations that seemed to riddle my mind and body whenever I was upright for more than a few moments in my pre-saline days.  Since the saline, I have fewer episodes of vertigo, lightheadedness, and severe breathing attacks.  I am able to be upright for much longer periods of time now, and I am even working my way into upright cardio exercise.  And perhaps most importantly, I have a vastly improved quality-of-life.

After experimenting with different amounts of fluid and different concentrations of salt and dextrose, my doctor and I settled on .9% sodium chloride, 5% dextrose - 1 liter per night.  When the gave me regular saline in the ER, without dextrose, it trigger a bad reaction in me, with severe shortness of breath and shakiness worse than a normal POTS attack.  I think, although it's just a semi-educated guess, that perhaps adding saline to my blood without any dextrose in it dilutes the blood, and that coupled with my low blood volume maybe leads to hypoglycemia.  Who knows, because they never tested my blood sugar when it happened in the ER, so it will just remain a guess.  No way am I letting anyone give me non-dextrose saline again.  Interestingly, I found another POTS patient online who also can't tolerate non-dextrose saline, but does well with 5% dextrose added.  My doctor also informs me that she has other patients who have bad reactions to non-dextrose saline, but they are fine when given a 5% dextrose saline.

I also use 5mL of pediatric Heparin (light blue vial and cap) to flush the port once a day, because the more concentrated adult Heparin (yellow vial and cap) was giving me instant headaches every time I used it.  If I only had to use it once a month, like people who use their ports for monthly chemo infusions and the like, I could probably deal with a once a month headache, but I use my port daily so I have to flush it daily.  Before my chest port, I had a PICC line in my arm and I did not flush it daily with Heparin, because no one told me I was supposed to do it everyday.  I though it was for the nurse to use once a week.  Oops!  I ended up getting clogs and other problems with the PICC line, probably because I wasn't using the Heparin.  I could easily blame the nurse I had at that time (interestingly, I don't think she works for the homecare company anymore), but I blame myself for not asking enough questions.   Now, if they ship me something I don't know about in my delivery box, I ask for the full details on what to do with it and the purpose of it is.

First, my doctor wrote a script for home saline therapy, and provide documentation as to why that was appropriate treatment for me.  We gave this to a local homecare nursing company, and they contacted the insurance company for prior authorization.  The insurance company did not raise any issues or problems, so we went ahead with it.

If you anticipate a problem form your insurer, your doctor may be able to get you a Daxor blood volume test, which uses a small amount of Iodine-131 as a radiotracer to determine your plasma, red blood cell and total blood volume.  In most POTS patients, it will be low, and this can be used to help justify the saline therapy to the insurer.  You may also want to document that you have attempted to drink 2-3 liters of electrolyte fluids a day, and increase your sodium intake to 5-10g per day, but that it hasn't resulted in a substantial improvement in your tachycardia or blood pressure in the upright position.  If you have seen a big improvement in your health with increased fluids and salt, then regular IV saline therapy may not be a good choice for you.

The homecare company usually delivers one week of supplies at a time.  They ship it to my house by private courier or Fed-Ex, and they will even ship it to me elsewhere if I go on vacation (if you count two weeks at Cleveland Clinic as a "vacation").  My deliveries include saline bags, IV tubing, C batteries, 5 mL heparin flushes, 10 mL saline flushes, alcohol wipes, Chlor-Prep (a sterile skin cleaner), a few extra clear bandages in case mine gets wet, and dressing/port needle change kits for the homecare nurse who comes once a week.  They also sent me non-latex gloves for the nurses and a small red "sharps" contained to dispose of the used chest port needles. They sometimes deliver blood collection tubes if my doctor ordered blood tests for me.  If you go to a regular outpatient lab, they probably aren't trained to draw blood from a chest port, so we let the home care nurse do it so I don't have to be stabbed in the arm over and over again (plus, they usually can't find a good vein anyways after one year+ of being a pin cushion).

I have to make sure they sent me enough for the week, because once in awhile they forget to stick something in the shipment - not good to be without essential supplies, especially the heparin which is used to prevent the port from causing blood clots.  

My nurse comes once a week to place a new Huber needle in my chest port, clean the skin near the port, evaluate it to make sure the port looks good, take my vitals (temp, BP, pulse & weight) and generally check up on me to make sure everything is going smoothly.  If I have any weird symptoms, they write it down and forward everything to my doctors office in a note.  The leave a copy of the report with me before the go.  I'm lucky enough that my home care nurses are willing to give me my weekly B12 injections as a friendly favor, even though it's not part of their job.  I tried doing it myself and having my husband do it, but we were both just too squeamish and it ended up hurting so bad and getting the red B12 liquid all over the place, so I just let the nurses do it.  I have the best nurses!

I have a small battery operated pump that resembles an old grey Nintendo Gameboy.  Each night just as I go to bed I attach a 1 liter saline bag to the tube, put the tube in the pump, program the pump to the flow rate I want that night (explained below), prime the tubing to get rid of the air bubbles, sterilize my port connection with alcohol wipes, flush my port with 10 mL of saline, hook my port connector up to the tubing and then I finally get the saline flowing into my vein.  The whole thing takes about 20 minutes to set up, so it can be kind of hard to do it if I wait until I am drop dead tired to set it up.  At first, the dim "whir whir whir" noise of the pump really annoyed me and made it hard for me to fall asleep, but now I am used to it.  It bugs my husband sometimes, so we figured out that if I put it under a few pillows or a thick blanket, we can't hear it anymore.  The faster the flow rate, the louder the pump.  We can't heart it at all on the 50mL/hour flow rate, but I usually have it set somewhere around 100-110 mL per hour.

My doctor has written my prescription for the saline so that I can change it from anywhere between 50mL/hr (which takes 20 hours to do a 1 liter bag) to 150 mL/hr (which takes about 6.5 hours to do a 1 liter bag).  This really makes it more convenient for me, because I can set the flow rate different each night, so that the infusion completes just about the time I am ready to get up for the day.  That way I don't have to wake up too early to turn it off if I go to bed early, and I don't have to walk around with it all morning waiting for it to finish if I go to bed late.  This is extra helpful because the pump makes a dreadfully loud "beep beep beep" alarm when the infusion is complete and it is not fun to be awakened by that.  Even though it's happened to me more than 20 times, I still think it's the smoke alarm every time I hear it and I jump out of bed in a frenzy.  Nothing like the fear of a blazing inferno consuming your bedroom to get your tachycardia going through the roof!  I have a vivid imagination.

If I need some extra saline during the day, or if I am too tired to hook it up at night, I can always do it during the day.  I have a cute little Stussy shoulder bag from back in the day that I wearing across my shoulder to carry the pump and saline bag, which probably weighs about 4 pounds (1 liter of saline weighs about 2.2 lbs and the pump, extra batteries and a few saline and heparin flushes I carry in the bag "just in case" weigh an extra pound or two).  I have gotten pretty good at hiding the IV tubing under my clothes so most of the time people won't even notice it if I'm walking around with it during the day. 

I have learned to take the port needle out myself and safely dispose of it in my "sharps" box.  The chest port needle and dressing has to be changed at least every 7 days, so after I do my 6th night of saline drip, in the morning I flush with 10mL of regular saline, 5mL of pediatric heparine and then I remove the needle and wipe the tiny wound from the needle with an alcohol swab. I give it about an hour to close itself up naturally, and then, if I'm feeling well enough, I head to the nearest pool or bay to do some aquatic exercise.  I get my chance for aquatic exercise only 1 day a week because it's too risky to swim with the needle in because getting the dressing or needle wet greatly increases the chance of infections.  Some people choose to put the needle in and pull it out several times a week, so they have more needle free days, but I don't have the courage to stab myself and my nurse only comes once a week, so I just leave it in for 7 days.  I know of some patients, including POTS patients, who have been trained to put their chest port needle in themselves using a mirror.  Sometimes this is because they just find it more convenient to do it themselves, rather than having to schedule weekly homecare appointments, but sadly, more often this is because their insurance company only allows for a limited number of home care visits per year, so they have to do it themselves.

Honestly, I don't know and it scares the heck out of me that I may be forced to stop the saline therapy before my body has healed enough to live comfortably without it.

I have read that most chest ports are designed to last for as long as 2000 needle insertions, although I am not sure that applies to people who leave one needle in place for a whole week.  Assuming and praying I don't have any infections/clots caused by the port, 2000 weeks would be 38 years.  I will be 70 in 38 years, and my doctors have promised me that I will get high blood pressure like everyone else in my old age so I won't have POTS anymore.  Funny, but not necessarily true since I've met women in their late 50s and late 60s with POTS. I have never heard of someone having a port that long.  The most I've heard about is 4-5 years, and if the person still required IV infusions, the doctors just removed the old port and inserted a new one.  Depending on the situation, the new port could go in the same spot or it can be moved to a new location.

In anticipation of someday not having to rely on IV saline, I have experimented with skipping one or two nights of saline at a time, or just giving myself half a liter, rather than a whole liter.  The most I skipped was two nights, and by the third morning, I was back to being a POTS zombie stuck laying down on the couch all day and having a hard time even walking to the bathroom without getting lightheaded and losing my vision.  I usually skip one night per week, the night just before my nurse comes in the morning to insert a new needle.  In the cooler weather, this seemed to be OK and I would just be a little more tachy and dizzy until I did my next liter that evening.  However, now that the summer weather has set in, I notice that skipping one night leaves me feeling pretty awful the next morning.  So now I am taking my needle out on the 7th morning, trying to squeeze my swimming in during that few hours of not having a needle, and having my nurse put in a new needle in the evening on the 7th day.  Frequently, the nurse scheduling does not work out, or there is a thunderstorm so I can't go in the pool or something else screws up my plans.  I am such a water person, having been practically raised at the beach, swimming and surfing in rumbing Atlantic Ocean waves since I was a toddler.  So the worst part of having this chest port to me is the limits is places on my swim time, but looking on the bright side, the summer before I had the chest port, I was so sick I couldn't even make it off the couch to get to a pool or beach - so once a week is better than never!

I just pray that my body is healed enough to cope without the IV saline by the time I have to take it out for good.  In fact, I hope that my body is healed way sooner than that!  Only time will tell.

While all of my treatment therapies so far have been aimed at giving me that extra boost needed to get myself healthy enough to tolerate exercise and other normal activities, I attribute my progress in large part to the Saline.  But since Saline is only part of my recovery, I will share with your what else I am taking in case any of it may be useful for other POTS patients to speak with their doctors about:
-.2mg of Flourinef because they found that I had low aldosterone levels;
-10 mg Singulair (we switched to a pill asthma med because the powder in my Advair disk was irritating my throat and lungs);
-10 meQ of prescription Potassium daily, because I had low potassium before the Flourinef and even worse since starting Flourinef because it causes you to excrete more potassium;
-Corvite, a prescription iron, Vit. C and B12 supplement from my hematologist to help support blood volume and to fix my low hemoglobin and iron levels he found;
-1000 mcg weekly injection of B12, to support nerve health and to provide me with a little extra energy boost;
-CoQ10-just started taking 200mg 3x daily because Cleveland Clinic found that I had low CoQ10 levels in my blood;
-Calcium "plus" bone supplement, because Flourinef can cause low magnesium and calcium levels and my blood tests for these minerals have been borderline low to low normal;
-400 IU of Vitamin E every other day - they never tested this one in my blood, but I figure if everything else is low, why not.  More antioxidants are always good, especially for neuropathy patients;
-Alpha Lipoic Acid-300 mg daily - there are some legit studies saying this helps slow down and may even repair neuropathy;
-Culturelle (lactobaccilus probiotic) - once daily in the morning to improve overall GI tract health and to ward off yeast infections, which Flourinef can sometimes trigger;
-A chewable acidolphilus and mixed pro-biotic/pre-biotic after brushing my teeth right before bed.  I found chewable cheap ones at Trader Joe's and CVS. GI health starts in your mouth, so I 'd rather have those probiotics thrive in my mouth at night than some nasty bad breath germs.  This also helps ward off thrush, which is an oral yeast infection that can be triggered by Flourinef.  It must be working because my tongue is as pink and healthy as a baby's;
-Genteal eye drop/gel - a few drops applied to each eye at night to prevent the severe dry eyes I was getting while sleeping.  It only helps a little bit.  I still have sandpaper eyes every morning.  The dry eye could be a sign of Sjorgen's Syndrome (pending biopsy to rule that one out) or nerve damage to my tear producing glands.
-20-30mmHg compression stockings, worn from the time I first get out of of bed until I go to sleep;
-as much fluids and "wet" foods as I can tolerate, and plenty of sea salt;
-as much upright time as I can tolerate, sitting and/or slow walking (standing in place really triggers my tachy, probably because of blood pooling in my legs so walking prevents that a little bit); and
-mild/moderate exercise everyday, like gentle weights, stretchy bands, yoga, stretching and forcing myself to have good posture even when it exhausts me.

Jun 15, 2011


So from all of the blogs I've read and the comments people send me, it seems like lots of POTSies have tested positive for Celiac Disease, which is an autoimmune condition in which your body produces harmful antibodies whenever you eat anything that contains gluten.  Gluten is a protein found in wheat, rye, barley and some other grains. These antibodies can attack your GI tract, and in some causes your thyroid and your nerves - amongst other regions of the body.

Other people test negative for Celiac Disease, but still see an improvement in their overall health when they switch to a low gluten or gluten free diet.  I am in this category of people.  I was having terrible GI symptoms for 9 months straight, and when I switched to a strict gluten free ("GF") diet, within a few days my GI symptoms started to improve and within 2 weeks I had more energy than I had in the previous 9 months. I have been on a GF diet for 9 months now, and I am continuing to feel better and have more energy, although I still have POTS.  My horrendous GI symptoms are almost totally gone.   I will never know for sure whether switching to a GF diet caused this improvement, but when you are as sick as I was (and I know most of your POTSies are super sick), you will try just about anything to feel better and get your life back.

There are numerous antibody tests to look for Celiac Disease. However, these antibody tests are not useful if you have already been eating a low gluten or gluten free diet.  There are also several Celiac genetic tests that can be run, and those still work whether you have been eating gluten or not.  No blood test is 100% accurate to confirm Celiac, and most doctors consider an intestinal biopsy to be the most accurate way to diagnose Celiac.

I am not going to try to write a dissertation on Celiac symptoms and diagnosis - there are many good websites out there on Celiac already.  I am going to give you a list of products I found very useful when I was getting use to my new GF diet.  I can seem hard to make the switch at first, but once you learn some tricks, you probably won't miss gluten products.  The only thing I really miss is semolina flour Italian bread, because there is no GF version of this - but someone will probably invent it soon!

First, you should take the time to learn what has gluten in it.  There are websites that can help you with this and if you have Celiac and you're not 100% sure, just don't eat it!  Your long term health is more important than that salad dressing with a mystery ingredient in it.  You will have to start reading ingredient labels on everything.  There are obvious gluten ingredients, like wheat and rye and barley, but then there are not so obvious things made from these products - like malt - which is made from barley and soy sauce, which is commonly made with wheat.

There are lots of brands that are labeled "gluten free" now, and there are also lots of things that are naturally gluten free and don't necessarily have a label on them (like most dairy, fruit, fish, meat, fish and poultry).  Be careful with packaged meat though, because lots of times they add spices and preservatives or marinades to packaged meats, so read the label to see if there are any gluten containing ingredients.  Same with dairy - sometimes yogurts and whip creams contain "natural flavors" or vanilla flavoring, and both of those may contain gluten - unless it says gluten free-don't risk it.

Here are the products I found to be helpful when I first switched to GF:

Bob's Red Mill All Purpose Baking Flour - this can be used like Wondra to thicken gravy, as a 1 for 1 exchange for regular flour when you bake cookies and cakes or whatever you use regular flour in.  I have bought lots of different Bob's Red Mill GF products, and I liked all of them so far.  Their cornbread mix is also yummy.

Bob's Red Mill Xantham Gum - a good clear thickener for gravy and soups, and I like to add 1 tsp. for every cup of flour when use the all purpose baking flour.  Gluten provides the chewy moistness to baked goods, so when you take the gluten out, you want sometime to replace that and Xantham Gum does the trick.

San Jay Gluten Free Tamari Sauce - most soy sauce has wheat in it, but this does not and it tastes just like regular soy sauce.  Technically, it's Tamari sauce, which is just high grade soy sauce.

Asian rice noodles and Mung Bean noodles (lots of iron in these!) - learn to love noodles - cold noodle salad with a tbsp. of peanut butter and a splash of your GF soy sauce and some fresh snap peas is so yummy.  Heat it up and throw in some soy marinated beef and you've got dinner.

Rice flour egg roll wraps - use these to make spring rolls, egg rolls or tex mex spinach roll ups like the ones at Chile's.  I have even stuffed them with beans, rice and cheese and eaten them like a burrito.

DeBoles gluten free corn pasta-any shape.  This is probably the closest tasting to "regular" pasta that I've had since I went GF.  It's so good, my family didn't even realize it was GF.  Also good because they are vitamin fortified.  Most GF flour products are not vitamin fortified, unless regular pastas, breads and flour containing products.

OrganicVille GF Mustard and Ketchup- most mustards and ketchupsGF if they have vinegar in them (until you have to time to research which products have GF vinegar and which do not).

Conte's Pasta Company (Vineland, NJ) - cheese and spinach raviolis, manicotti, stuffed shells, etc. - if you are lucky enough to see this in your local foodstore - buy as much as your freezer will hold!  I think you can order them online from the company directly too.  This also passes the "this doesn't taste gluten free" test.

Taco shells, tortilla chips and soft corn tortillas -lots of brands are GF because these are corn based products.  Just google the brand before you buy it.

Corn Polenta-great lightly fried and served with marinara sauce sauce when the rest of your family is eating regular pasta.

Rustic corn bread made without regular flour - if you feel to need for something bready, this is a good GF option.  Goes great with black bean soup, or make it with a little cinnamon and butter as more of a breakfast treat.

Mary's Gone Crackers - their quinoa and brown rice crackers are so yummy and super healthy for you.  They also made sea salt "sticks and twigs" which is like a nutty sesame seed flavored pretzel.  Note, I am not a far of their cookies, which seemed to dry to me.

Aleia's Oatmeal Raisin cookies-OMG!  These are better than any "regular" oatmeal raisin cookies you can get in the foodstore.  They taste like grandma's homeade straight out of the oven.  They can be pretty pricy ($9-10 per bag), but you get more cookies in them than most other cookie packages and they are so worth it for that once in blue moon sugary snack.

Snyders of Hanover-GF pretzels sticks.  These taste exactly like regular pretzel sticks.  Awesome!

Udi's-this GF company makes really good White Bread, Bagels and Muffins.  I am addicted to the chocolate chocolate chip muffins, which taste more like cupcakes to me than muffins (I indulge my tastebuds with GF icing on those sometimes).  The White Bread tastes just like regular white bread if you toast it, but it is a little on the dry side (like many GF baked goods) if you eat it fresh.  I keep the bagels and bread in the freezer and just toast them before I use them.  I also use leftovers of the bread and bagels to make my own toasted breadcrumbs or salad croutons.  Udi's always has $1 off coupons on their website, and you can print like 100 of them.

Glutino GF Crackers - these don't taste GF - they taste kind of like Ritz crackers.  The come in cheddar, herb and other flavors - all good!

Rice Chex-Chex removed the malt from these to make them gluten free, which is pretty cool.  Eat them for breakfast or use them as a base for your own zesty Chex mix snack.

Kozy Shack puddings - GLUTEN FREE and soooooo good!

Think Thin bars - these are GF energy bars that are packed with vitamins and they come in all sorts of indulgent flavors like brownie crunch, cookies and cream, peanut butter, etc.

I don't drink alcohol since it makes low blood pressure worse, but if you are a beer drinker, I hear there are several brands of gluten free beer.  Don't drink your regular beer because it almost certainly contains barley, which has gluten.

Trader Joe's has an online list of everything they know for sure is gluten free in their store, and they have started putting little G logos on their own brand products that are gluten free.

Whole Foods has lots of GF items, and they have started putting gluten free stickers on the shelves under some of their GF products, but not every product yet, at least in my local store.

Stop and Shop has a good gluten free section.

Ask your local foodstore to start carrying some GF items.  The more people who ask for these products, the more you will start to see them in stores.

And don't forget, even if you have no medical reason not to eat gluten, you will probably be eating healthier by skipping some of the white breads, pasta and sugary baked goods anyway.  There may be a reason so many people are being diagnosed with Celiac now. I think it's because America eats to much gluten!  Once you start looking, you realize it is in almost ALL processed food.  There is no such thing as Celiac in countries that don't eat all the processed foods like we do.

Happy GF eating!

Jun 8, 2011

POTS, Lyme and Mycoplasma Infections

So on the rare occasions that I have enough energy to do anything productive, I've been doing medical journal research and scouring POTS patient forums to try to figure out what caused my POTS and to try to find something that will help me get my quality of life back.

It's commonly accepted that many POTS patients have what is called post-viral POTS - that is, they developed POTS after a viral infection.  This is similar to people who develop Chronic Fatigue Syndrome (CFS) after a mononucleosis or Epstein Barr viral infection.  In fact, there are connections between CFS and POTS currently being studied by Dr. Julian Stewart at New York Medical College in Valhalla, NY.  This is the "best" kind of POTS to have, because patients with post-viral POTS are the ones most likely to recover over time.  One study found that about 50% of post-viral POTS patients had substantially recovered within 5 years of the onset of their symptoms.  And of the 50% that hadn't recovered, many had seen some improvement in their daily symptoms.

Early on in my illness, I tested positive for Epstein Barr virus (EBV), but not mono.  My Epstein Barr tests showed that I had a past infection, not a recent one.  Almost everyone over age 30 in the US would have the same test result, since most of us get exposed to Epstein Barr at some point in our younger lives.  EBV stays dormant in your body, and only rarely does it come back and cause symptoms.  So it is unlikely that an Epstein Barr infection caused my POTS.

I fell ill in early January 2010, and in late January 2010 I was tested by an infectious disease specialist for several "atypical pneumonias," including Mycoplasma pneumoniae.  There are about 100 species of Mycoplasma and they are the smallest free living agents of disease that can infect humans.  They are classified as bacteria, but they have no cell wall like almost all other bacteria.  Mycoplasmas act more like viruses than bacteria in many regards.  Most antibiotic medications destroy bacteria by attacking the cell wall of the bacteria, but this does not work with Mycoplasmas because they do not have cell walls.  This amorphous shape allows them to enter in the smallest places in your body, to pass through membranes that other bacteria cannot enter (like the blood brain barrier), and remain dormant for many years.

While viral infections are recognized by the medical community as a common trigger for POTS, I was curious if a bacterial infection could also trigger POTS, so I began researching this.  I came across a case study written by a team of doctors who treated a patient with POTS that they believed was triggered by a bacterial Mycoplasma pneumonia infection.

Then I found a newspaper article about a Professor of Cellular and Molecular Biology at the University of New Haven, Dr. Eva Sapi.  A few years ago Dr. Sapi came down with a serious illness after a tick bite, but she tested negative for Lyme Disease, which is caused by Borrelia burgorferi bacteria.  She decided to check out the ticks in her area of Connecticut, and low and behold, she found that those little buggers were carrying much more than just Lyme Disease.  She found that most of the ticks she tested harbored several species of Mycoplasma.  She also found other pathogens previously unknown to be transmitted by ticks.

I was bitten by about 20+ deer ticks, dog tick, a few lone star ticks and possibly chiggers (or juvenile ticks) at the NYS DEC mountain biking trails in Eastport, Long Island in September 2009.  The trails were badly overgrown because the State had cut funding from the DEC, so they could not longer afford to properly maintain the trails.  My husband and I got about 3 miles into the one way trail, and my bike chain broke because it got snagged by a large branch.  The trails were too overgrown to walk through and it was about another 6 miles to the end (with only and hour or two of daylight left), so we decided to carry my busted bike and bushwhack our way to an adjacent farm field.  Well, the farm field was DEC property too and it was totally overgrown with poison ivy and sticker bushes, so let's just say that was a really fun hike.  Hours later at dusk, with dozens of mosquito bites and ticks crawling all over us, we made it back to the car.  We spent a half-hour de-ticking ourselves in the parking lot and about a hour each in the shower getting those little rascals our of hair, the crooks of our toes, and even one in my belly button.  Gross!  As a precaution, we went to the local walk-in clinic and asked for a preventative dose of Doxycycline to try to avoid getting Lyme Disease.  They gave my husband and I two 800 mg Doxycycline pills to be taken for two days.  We went back to the doc about 8 weeks later for a follow up test to confirm that we did not have Lyme, and all was well.  I have been tested for Lyme and it's common co-infections (babesosis, bartonella, ehrlichiosis, etc.) many times by different doctors who assume their tests will come out different than the last 5 doctors who looked for these bugs.  Nothing has come back positive, except the Mycoplasma pneumoniae.  

I got a little cold in early November before I got really sick in January, but nothing serious.  I still went to work and went snowboarding in VT.  I also almost passed out at lunch with my boss in November too, which was kind of odd.  I felt like I had a fever when it happened, but I took some Tylenol and the fever feeling did not subside.  I went home early and fell asleep and then I felt fine the next day and returned to work.  Then all hell broke loose on January 2, 2010 when a full onslaught of autonomic symptoms appeared during a ski trip in Vermont.

Putting all of this information together, I have added a new theory to my list of theories on what may have caused my POTS and autonomic neuropathy.  My new theory is that I may have developed a Mycoplasma pneumoniae infection after being bitten by Mycoplasma carrying deer ticks in the summer of 2009, or perhaps I just picked up a Mycoplasma infection from a person I came into contact with.  The "minor cold" I had in November could have been a little walking pneumonia caused by the Mycoplasma pneumoniae infection (most people who are infected with Mycoplasma pneumoniae don't even know they have it - that's why they call it 'walking' pneumonia, because you can usually still go to work/school and feel just a little under the weather).  The feverish fainting episode in November may have also been caused by a Mycoplasma infection.  Most Mycoplasma pneumoniae infections are spread by coughing and then another person inhaling the bacteria into their lungs.  If I caught it by being bitten by a tick, it would have gone straight into my bloodstream and possibly could have passed through protective barriers and entered my nervous system - avoiding a major lung infection.  I had chest x-rays in January/February and they were always 'normal' showing no signs of infection (although one doctor out of many I saw said he through the x-rays showed a minor case of bronchitis).  I even asked the infectious disease expert who found the Mycoplasma infection if it could be infecting my nervous system, because even in January 2010 when I first got really sick, I was having lots of neurological symptoms and not much in terms of lung/respiratory problems.  He said it was possible, but rare.  I found a medical journal article stating that up to 7% of patients hospitalized with Mycoplasma pneumoniae infections have symptoms involving the Central Nervous System, and while the mechanism involved is not clear at this time, direct invasion of the nervous system, neurotoxin production and immune-mediated mechanisms have been proposed.   See also, http://www.ncbi.nlm.nih.gov/pubmed/16181677.

The good news is that Mycoplasma pneumoniae can usually be treated, or at least the symptoms relieved, by long term dosing of strong antibiotics like Tetracycline or Doxycyline, or a combination of several antibiotics over months and months, or maybe even a few years.

We are still not sure whether my Mycoplasma infection is the root cause of my autonomic neuropathy and POTS or if it has any relationship to my current illness at all.  That's why it's just a theory.  But interestingly, the infectious disease specialist I saw during the first month I was sick, in January 2010, thought I had Mycoplasma pneumoniae and gave me 7 days of Doxycycline to treat it.  I took it and actually felt much worse when I was on the antibiotics, but I toughed it out thinking it would be more important in the long run to kill the bacteria.  I later learned that I could have been experiencing a "Herx reaction" when I got so much sicker from the antibiotics.  A Herximer reaction occurs when a rapid dye off of a pathogen in response to antibiotic treatment results in a sudden release of toxins in the body, which can exacerbate symptoms and may actually cause serious health problems.   My infectious disease epert thought I had Mycoplasma because enough of my symptoms seemed to match the diagnostic criteria at the time, and because my lab work showed that I had extremely elevated IgG levels of the Mycoplasma pneumoniae antibody, and the fact that I may have had a Herx reaction from the antibiotics hey gave me only makes me more inclined to think he was correct.

Normally, elevated IgG antibodies indicate a past infection, because IgG is produced once your body has already been exposed to a pathogen.  IgM and some of the other Ig antibodies are usually indications of a current and active infection, but my IgM levels were within the normal range, although present.   When I asked the infectious disease expert about this at the time, he said that sometimes a person can develop very elevated IgG if they are exposed to a second infection of the Mycoplasma pneumoniae.  He said you may not develop IgM because your body has already "met" the Mycoplasma pneumoniae germ in the past and has developed IgG antibodies to fight it, and that's why my IgG antibodies were so high and IgM were within the normal range.  It sounded logical to me, and my symptoms seemed to align with a Mycoplasma infection with some neurological complication, so I suffered through the antibiotics.

A year later, I was still sick and I happened to be in the hospital.  I mentioned to another doctor about the Mycoplasma issue and about my prior IgM and IgG levels.  They told me that if I did have a Mycoplasma infection the year prior, 7 days of Doxycyline would not have been enough to properly treat it.  So they checked my Mycoplasma antibody levels again, and a year after the first time it was checked, essentially the same results came back.  My IgG was over 400, when it should be below 100 or non-existent.  I have discussed this issue with various doctors, and they all tell me something different when it comes to interpreting the IgG test results.  Some say it's an old infection, some say it could be active, some say they're not sure.  I don't know who to believe and I am not currently taking any antibiotics to treat it.

Even if I don't have an active Mycoplasma infection, I have learned that this bacteria can hide out in  your body long after you've been treated with antibiotics.   Even if there is no Mycoplasma at all in my body, perhaps I am still recovering from the damage it caused to my nervous system when it was active.  Like I said, this is just another theory.

To all of you POTSies out there, I want to hear from you if you have tested positive for Lyme or Mycoplasma pneumoniae (or were diagnosed with walking pneumonia), especially if this happened just prior to the onset of your POTS like symptoms.

Stay tuned to see if my Mycoplasma mystery is ever solved...