Friday, October 24, 2014

Why Lyme?

This post is about what led me to finally suspect and pursue Lyme as a reason for my issues.



1.  History of tick bites- at first I blew this off because really, who HASN'T been bitten by a tick? I never remembered the "bulls eye" rash (officially called an erythema migrans) commonly associated with  Lyme, but many patients never get this rash or don't notice it if it's on the back or in the hair.  I distinctly remember a bite about 4 years ago, because it left a red itchy spot on my stomach for about a month.  I don't remember the tick, how I got it out, how big it was, etc.  The other major bite I know of was when I was a toddler. I had one on my head, and a month or more later my parents took me to the doctor for swollen lymph nodes in my neck.  They asked if I'd been bitten by a tick, and when my parents said yes, the swelling was attributed to the bite.  My LLNP (lyme literate nurse practitioner) who is treating me believes, and I agree, that this was the bite that initially infected me.  There would be no reason for swollen lymph nodes weeks later if my immune system wasn't trying to fight something off.  Of course there's no way to know for sure, especially since the tiny deer ticks in the nymph stage are what most commonly transmit Borrelia borgdorferi (the bacteria that causes Lyme) so often you don't ever see a tick or know you were bitten. Also it is now coming to be believed that Lyme can be transmitted via other biting insects like mosquitoes and spiders. It can also be transmitted in utero and has been identified in breastmilk (meaning we'll likely be testing the kids at some point, and facing treatment decisions there if things show up questionable).

2. Symptoms that don't match testing- I had so many symptoms of other diseases, like thoracic outlet syndrome, MS, lupus, arthritis, neuropathy, but the testing was all negative. That's a hallmark of Lyme. It mimics other inflammatory and autoimmune conditions.  I even had surgery for alleged carpal and cubital tunnel syndromes on my right arm that, not surprisingly, didn't help at all.  In fact, my surgeon told me that my symptoms were much worse than what the nerve tests showed they should be but he recommended surgery anyway.  I now wonder if that arm EMG/NCV showed any abnormality at all.  I sort of doubt it.  My fingertips are all numb, my arms and hands go to sleep all the time and they hurt to some degree almost constantly.  Writing, typing, texting, and even holding a cell phone to talk are painful, but all tests are normal.  The tingling/buzzing feelings throughout my body, and most noticeably in my feet, made me immediately suspicious of MS and I was grateful to be seen by a top MS neurologist at UAMS last fall within weeks of noticing the symptoms.  After a workup and MRIs, MS was ruled out.  It would literally feel as if I were stepping on and off of a vibrating cell phone, very bizarre sensations.  I flew to Chicago to a peripheral nerve center to see another neurologist who repeated the EMG/NCV on my arms and legs, again normal.  He said if it was a neuropathy, it was small fiber because that doesn't show up on those tests.  My ANA was elevated, that's antinuclear antibody, and basically means there's something wacky going on in my immune system. The positive ANA earned me a visit to a rheumatologist to rule out things like lupus, and testing for it and other autoimmune diseases was negative.

3. Online wisdom - now I know you can't believe everything, or even most, of what you read online. But as I was searching and searching, reading through forums on a myriad of diseases it seems that the people who most matched my symptoms ended up with a Lyme diagnosis.  Every time I would post my list and get feedback, it would be suggested to test for Lyme.

4. A bit of divine intervention - I have some eclectic spiritual beliefs that aren't relevant here, but I've received what I believe to be a bit of otherworldly guidance on a few occasions along this journey.  The first time I really knew in my gut that Lyme was probably my issue was one day a few months ago.  I was in Barnes and Noble and grabbed a book called "Why Can't I get Better."  At this point, I'm pursuing the neuropathy, trying to figure out what is causing it and how to stop it from progressing.  All I know is it doesn't fit the typical presentation of anything the  neurologists I've seen are familiar with.  Symptomatically it seems most like small fiber neuropathy, but the fact that it was patchy and widespread didn't fit the usual causes.  At that point I had ruled out large fiber neuropathies and was trying to figure out what could cause an atypical presentation of small fiber.  I grabbed a latte and sat down with this book by Dr. Horowitz.  At the time, I had no idea he was a cutting edge Lyme doctor.  I just opened  to a random page in the middle of the book and the first sentence my eyes landed on was "Lyme disease can cause small fiber neuropathy." Light bulb moment right there.

5. History of Herx reactions-  A "herx" is a nickname for the Jarisch-Herxheimer reaction commonly associated with spirochetal infections like syphilis and Lyme. It is thought to be the result of the release of endotoxins that occurs when the bacteria are killed.  It can present as a worsening of current symptoms, fever, chills, and general flu-like symptoms.  My first experience with this was on our honeymoon.  I ate lots of Mexican food in Cabo, drank margaritas at the swim up bar...then got a deep tissue massage.  It made me SO ill.  We cancelled our dinner reservations that night, as I lay in bed with what I thought was the flu.  It was gone the next morning.  I now realize that the massage likely moved things around and increased circulation to the infected tissues, bringing more immune cells in to kill the bacteria, resulting in die-off and endotoxin release causing me to feel sick.  The second instance was this summer.  I did a 10 day First Fitness Nutrition Cleanse (and this lets me know it works!).  Days 1-7 I ate super clean, drank tons of water, and took the pills and drank the tea.  Likely my body was working well and killing bugs like crazy with that support.  Day 8 I drank 3 beers and ate junk food, and within hours I spiked a 101 F fever, couldn't stand to have my skin touched and was achy from head to toe.  I had to have my mom come up and help with the kids the next day because I had "the flu" again.  It lasted 24 hours.  At the time I thought it was so strange to have a 1 day viral like illness in the middle of the summer.  I now know it was a herx. When I drank alcohol instead of water, and ate processed food, it overloaded my body's ability to detox and those endotoxins made me sick. To be honest, I always thought "cleanses" and "detoxing" were woo-woo money making schemes, but at least for me, they actually do something and are necessary for proper functioning.

6. Western Blot - I could write an entire post on navigating the world of Lyme disease testing, but I'll keep it simple here.  A western blot blood test indicated that my blood had antibodies to Borrelia burgdorferi, both IgM indicating an active or new infection and IgG indicating a chronic or old infection.  The test cannot tell you "Yes, these crazy symptoms are a result of the fact that you have this bacteria in your blood. Treatment will cure you." That's why Lyme's a bitch.  It's a clinical diagnosis, meaning you look at the big picture.  The test plus the symptoms plus the response to treatment.

So I very strongly suspected Lyme based on the above, but a huge part of me thought that was crazy.  I called a few lyme literate doctors (LLMD) and they couldn't see me for 3-5 months, so I made an appointment with this nurse practitioner in Collierville.  She discovered she had Lyme at age 30, and her mom and child also have it.  I love that she has both professional and personal experience with it.  I don't know if I'll stick with her as my provider long term (chronic Lyme treatment can take years), but I left my appointment satisfied, which is more than I can say from any other medical appointment thus far.




Thursday, October 23, 2014

Mystery Diagnosis (aka What the Heck is Wrong with Me??)




Wow where to start with this one?  For the last year or so, basically since Fletcher was born, I've been dealing with an increasing number of seemingly random health complaints.  I've seen 4 neurologists in two states, 2 primary care physicians, 1 gynecologist, 1 rheumatologist, 2 physical therapists, 1 optometrist (love you KR) 1 chiropractor and 1 myofascial release massage therapist.  1 had 2 MRIs, 3 EMG/NCV where they stick needles into your muscles and make you flex and shock you with electrodes (so painful not even Anastasia Steele would be into it).  I've given more blood than you can imagine.  I've done funny looking stretches and exercises that entertained my coworkers. It's been a second job that takes your money instead of earning a paycheck.  

Out of all those educated minds, can you guess who was able to finally diagnose me?  Was it the rheumatologist who told me "everyone has pain, I think that you are perhaps just more aware of it" than others?  NOPE!  What about the neurologist who said "If you have a problem, then I have a problem and I know I don't so you're fine.  Go home and rest well."  NOPE!  Or maybe it was another neurologist who said "I don't know, maybe it's fibromyalgia" here's some antidepressants.  NOPE!  Who was this brilliant diagnostician?  Yep it was me, a googling pro and semi-savvy researcher.  There's definitely some contempt there for a few of these doctors that I need to let go of, but I'm not quite ready yet.  My chiro and massage therapist are fantastic and helpful, but they weren't able to fix my issues and all the doctors had to offer were shrugged shoulders, Xanax and antidepressants.

The more I read and looked up, and the more things that were ruled out, I was basically left with one thing that I felt must be it.  So I ordered a special blood test with the help of my chiropractor, mailed my blood to California and waited. The results, combined with my symptoms, confirmed my suspicions.  I found a specialist, and yesterday was my appointment. I sat down and compiled a master symptom list that is embarrassingly long, but it is what it is.  She looked over it, listened to my story,  looked at my lab results, and said yes you have it. So what is this mysterious it???? Well first, here's the symptom list.  Maybe someone someday will read it and see themselves in it and it will help them on their journey to diagnosis.  

Symptom list

  • hand, wrist, arm pain
  • numb fingertips, decreased sensation in feet, numb nose,
  • tingling and buzzing sensations (feet, legs, scalp, face)
  • rib pain
  • bouts of burning and hypersensitive skin on upper body
  • waking up at night with racing heart, feels like a panic attack
  • rocking sensation, like body is gently rocking to pulse
  • internal vibrations like floor or bed is shaking
  • eye pain when moving eyeballs around and up
  • marked increase in eye floaters
  • right side hairline sweating while eating
  • itching at night (head, arms, torso)
  • occasional spacey feeling, like I’m floating or in a bubble, disconnect from surroundings
  • frequently feel achy throughout body (legs, hips, low back, feet)
  • hands and feet often cold and have become more intolerant of cold temps
  • creaky popping joints, especially shoulders and neck
  • easy bruising
  • heart palpitations
  • ears ringing or hearing pulse in ears
  • muscle twitches
  • ANA elevated (1:320)
  • anemia
  • low vitamin D levels despite supplementation and lots of sunshine
  • miscarriages


And the mystery diagnosis is........ 









I now think I've probably had this since I was a child, and it eventually overpowered my immune system's ability to keep it in check with the hormonal/physical/emotional stress of the postpartum period.  I'm working with my lyme literate provider to do some further testing and come up with a treatment plan.  Stay tuned!

Saturday, October 11, 2014

Boozy Beany Bacon Chili


Rich hunts and I needed a good recipe to use up some of the deer meat we had in the freezer.  I found a venison chili recipe on allrecipes.com that formed the base of this recipe.  It is a family favorite, and Lucy often asks for her deer chili.     This isn't your traditional chili flavor, but we adore it.  Don't worry about the wine with little ones, the alcohol cooks off while leaving a great flavor.

Boozy Beany Bacon Chili

1/2 large red onion, chopped
4 cloves minced garlic
3 Tbs maple syrup
1 1/2 cups red wine (like a cab)
4 Tbs red wine vinegar
6 oz can tomato paste
4 cups chicken or beef broth
2 tsp cumin
1 Tbs chili powder
2 tsp chipotle chili powder (optional)
1/2 tsp cayenne (optional)
1 tsp smoked paprika (optional)
salt to taste 
12 slices bacon
1- 1.5 lb ground meat (we use venison usually)
1 can black beans, rinsed and drained
1 can chili beans
1 can ranch style beans

Cook bacon and reserve about 1 TBS grease.  Set bacon aside and crumble when cool.  Brown ground meat in bacon grease.  Cook onion and garlic. I usually just do the ground meat, onion and garlic together in the skillet.

Add your cooked ground meat, onion, garlic mix to a large stockpot or Dutch oven.  Add the maple syrup, wine, vinegar, tomato paste, broth, spices, crumbled bacon and beans.  Heat over high til it gets bubbly, then turn down and simmer until the liquid has reduced to the thickness of chili you prefer.  I usually simmer for at least 45 minutes.  

Serve with your favorite chili fixings.  We like shredded cheese and fritos.  This can easily be made a day or more in advanced, as it tastes better after the flavors have had time to meld.  

The optional spices can make this pretty spicy so adjust accordingly to taste.

Tuesday, October 7, 2014

Hey I put some new shoes on and suddenly everything's right

Well maybe not everything, but close enough for today. This is me committing to the Little Rock half marathon 2015. For real this time.

The last year has had it's challenges and exercise has fallen way off even the back burner, and it is time to get back out there.

Wednesday, October 1, 2014

Combating Cold and Flu Season with Elderberry Syrup and Gummies

Elderberries have been shown to have antiviral and antibacterial properties, and to enhance our immune systems.  Here's a link to an abstract for one study, and another one.  There's quite a bit of info out there if you're the researching type.

Elderberry syrup can be purchased at most health food stores, some pharmacies and online.  However, it's super easy to make at home and Lucy thinks it's fun to help make "medicine."

I use the recipe from Wellness Mama, although I usually increase the spices a bit and always try to use fresh ginger.    You want to make sure and use local, raw honey, not the kind you buy in the cute bear at the grocery store.  Here's what you need- honey, dried elderberries (I like these), cinnamon, cloves (whole or powdered is fine), and fresh ginger.  If you're making gummies, you need a good quality gelatin like this one from Great Lakes.  A mold is fun but not necessary. You could always pour it into a jelly roll pan or baking dish and cut into squares.


You boil the elderberries and spices in the about 4 cups of water, and then reduce heat and simmer for about an hour.


Then you strain out the solids, make sure and smush the solids in the strainer to get all the liquid out.


Pour into a jar (reserving 1 cup if you want to go on to make gummies)


Take 1/2 - 1 tsp daily for kids, and 1 Tbs daily for adults. Increase that to every couple hours during an active infection.



If you're making gummies, use the cup of reserved syrup and follow the rest of Wellness Mama's directions.  I just poured the syrup, water and gelatin all into a bowl and whisked. It had a few clumps I had to pick out but otherwise worked well.  Put the mold on a cookie sheet, chill an hour or so and you've got germ-fighting candy!






Monday, September 22, 2014

Today I should be

 25 weeks pregnant, but I had a miscarriage at 8 weeks in May. Today I should be 8 weeks pregnant, but I had a miscarriage 2 weeks ago.

It seems that pregnancy loss is right up there with politics and religion on the list of things you don't talk about. But that is wrong. For any mother, or father, who has lost a potential baby it deserves to be spoken about. 

My two lost little ones each have a story, & I will tell them soon. But for today it is enough to acknowledge that they existed,  however briefly. 


I wish I had the ultrasound picture from this most recent little Nugget,  but the ultrasound tech did not offer and I didnt ask.  


My keepsakes from our May Nugget. 


I don't write this post so that anyone will feel sorry for me. I write this so that any other woman who is going through this or has experienced it will know that it is OK and not something to be ashamed of.  I am okay. I have beautiful family and a blessed life. I am strong and have a wonderful husband by my side. And Baby Morris #3? Time will tell.

Friday, September 19, 2014

From Vegan to Beef Heart

All the credit for the title goes to my friend Kendra. She was picking at me when I posted a pic of a beef heart on my Facebook.  



So as you may remember, I was vegetarian and actually almost completely vegan for awhile.  I had several reasons - concern for animal welfare, environmental impact of factory farming, health, and it was cheaper to boot.   This ended when I was pregnant with Fletcher.  With Lucy, I had a pretty strong aversion to meat, but with Fletcher I craved it.  I addressed my animal welfare and environmental concerns, as well as health concerns, by sourcing most our meat from local farmers.  I feel much better about eating a pig that I saw happily hanging out a few days earlier on the farmer's Facebook page.

After Fletcher was born, I started having some concerning health symptoms, as well as a worsening of some previously mild ones.  It's a long saga and I still have no diagnosis or competent help from my doctors, but I'll save that for another day.  My frustration with my care and my concern about my health sent me straight to the University of Google to earn my degree in What's Wrong With Me with a minor in How Can I Fix It.

Enter the Paleo Approach, and more specifically the Autoimmune Protocol, commonly known as AIP.  This book is intense.  I am not a total dummy, but I really had to focus and get my mind in study mode to read it.  The science is sound, and the author is brilliant.

  So what is it?  It's a very strict elimination diet based on the premise that autoimmune disease is largely impacted by the health of our digestive systems, and that what we eat or don't eat can exacerbate or ameliorate symptoms.   Basically you follow the plan until you feel better, then you slowly start reintroducing foods and see how you do with them.  I have put off doing this for a year, but in that year I've spent hours researching it and preparing in case I did end up needing to try it.  The reason I am hesitant is because my gut is great.  I don't suffer from GI issues, so it's hard to get on board with the train of thought that my gut could be causing or contributing to my overall health.  I'm finally ready to give it a shot.  Other than being difficult, it can't hurt and could potentially help.  Plus I'm never one to shy away from a challenge.  I've been following the plan about 85% all month, but in the next few weeks I'll be jumping in with both feet for a 100% compliant period of probably 60-90 days.

So the sad part (aka what I won't be eating)-
-nuts
-seeds and seed based spices
-beans/legumes/soy
-grains
-sweeteners
-dairy
-alcohol
-chocolate
-processed foods
-eggs
-nightshades (peppers, potatoes, tomatoes, eggplants)
-vegetable oils (can have olive, coconut, palm oil)

Yeah, I know.  I'm not doing this for fun. I'm mourning the loss, at least temporarily, of pretty much everything "normal" and tasty to eat.

So what does that leave?  Lots of local pastured meat, seafood, vegetables, some fruit, and......that's pretty much it. Thankfully there are several cookbooks and lots of great AIP blogs for creative recipe ideas.  And where does the beef heart come in?  This plan calls for eating organ meat and offal (oh the irony of that term),  I have made burgers using beef heart.  And you know what? They were rich and delicious! I'm sure Rich wishes he had a normal southern wife that cooked him chicken spaghetti, ritz cracker chicken and the like but he's stuck with me.  Insert evil cackle here as I think about the beef tongue and oxtail in the freezer.

I'll keep you posted when I actually start the plan fully.  I plan to blog about what I'm eating and if it is making any difference.  Because if I feel the same after a few months of eating this way, you can bet your caboose I'll be back on the chocolate and tomatoes.   I'm skeptical, but hopeful.