Herx on!

I started my 200mg of Doxycycline for the treatment of Lyme Disease officially as of this past Saturday, November 16th.  Now keep in mind that i am a total baby and never had to really learn to swallow a pill up until now. But for some reason the impending doom of my failing health seemed to be a good enough motivator to grow a pair and go ahead and do it.

So here we are. I am an adult who can swallow pills.. YAY. And no one officially cares because i should have been doing this a long time ago.. 

So these past few days have been quite wonderful. So as i have mentioned in previous posts i am familiar with the Jarisch-Herxheimer reaction. To describe what this reaction is correctly i think it is best to refer to Lemon & Lyme's Blog post: 

"Chronic Lyme patients have to deal with the Jarisch-Herxheimer Reaction from antibiotics. The reaction is named after Adolf Jarisch and Karl Herxheimer who published descriptions of the reaction in 1895 and 1902, respectively (Rull).

For short, it's often referred to as "the JHR," "herxing," or "a herx." Not all patients will herx, it depends on the level of infection and the type of treatment, among other factors, but it's something to be aware of before beginning treatment. If not expecting it, a herx can be a terrifying and incredibly disorienting experience....Herxing occurs when dead or dying bacteria release large amounts of toxins into blood and tissues at an alarming rate. "This provokes a sudden and exaggerated inflammatory response" ("Herxheimer..."). Essentially, the body is attempting to eliminate the released toxins much faster than it is able to ("A Body...").The bacteria can also drill into the white blood cells and live inside. Killing these particular bacteria also results in the death of the host cell. The immune system releases the massive inflammatory response, and this will "cause a rise in symptoms in the area in which the bacteria are being killed"". 

Okay so i realize that wasn't the smallest passage. I am all too familiar with this from having manual lymph node drainage massages for a little over the past year or so. Personally when i Herx it feels like something like this:

When in actuality it looks more like this:

Fevers

Hot Sweats

Nausea 

Muscle Pain

Joint Pain

Headaches

Hypersensitivity to Light

Hypersensitivity to Sound

Hypersensitivity to Smells

Anxiety

Depression

Paranoia 

Muscle Weakness/Fatigue 

Mental Exhaustion

Cognitive Problems

Trouble Reading

Slowed Motor Function

Vertigo

Short Term Memory Loss

Tachycardia 

Heart Palpitations

Bloating

Bathroom Problems (Diarrhea -Constipation) 

Hallucinations

SOUND LIKE FUN YET?

The hardest part of all of this is that i look completely normal when the majority of this is happening. Which makes all of this that much harder constantly reminding people that although i may look well.. its not all what it seems.

Invisible diseases take their toll mentally, physically, psychologically. 

I am beat down, tired, nauseous, and tired tired tired... and to believe this is only the beginning of the beginning.

3/21 days down...

New Diagnosis New Life?

When someone has told me that they had an experience that "literally changed their life", i always found that hard to believe. I find that most events in my life that could have been considered that were always made into memories that occupied shelf space in the library of my brain while i putted through life. Occasionally looking back and reflecting. 

This past Friday was surely an exception and an experience that completely changed the way i look at the world and life in general. Its in my professional opinion that having the feeling of dying will do that to you.

I was admitted into Mass General Hospital after being out at a show and having heart complications. 

I was with one of my best friends and her two friends seeing Mackelmore and Ryan Lewis at the TD Garden. That day was no different than any other. I worked in the morning, took a nap, ate food and then was off to get ready to pick up my friend and head into boston to get our tickets for the show. 

When i got there i was relaxed, excited and relieved. I had a really rough work week and it was nice to finally catch up with a good friend and be at a show. I have always found my happy place to be at a show or in nature and usually a show is more accessible. 

We saw the two opening acts and then halfway through Mackelmore's set (right after he played Thrift Shop) my friend noticed i wasn't moving around. The whole night i was dancing and wiggling (i swear i can't NOT dance when i hear music). Now this is where my memories get really fuzzy so this is my knowledge of what happened hearing it from my friend. 

I stopped moving around and stood there really taken back and she said that if she didn't know me better i would have looked overwhelmed by the crowds and claustrophobic. She kept asking me if i was alright and i responded multiple times saying "i feel weird, i feel sick, something isn't right". She said "okay do you want to sit down" and i said yes and bolted out of the general admission area, through the bleachers into the hallway. A little back drop here... i am almost 5'10" and my friend is 5 foot nothing so when i walk fast or run this poor girl is booking it to keep up with me.. and when i panic i run REAL fast. Anyways so i get to the hallway and sit down and my body is shaking pretty violently. Not to the point where i think it was a seizure but something for sure was not right. I wasn't really responding to any questions they were asking and i don't even remember anyone asking me anything. The EMTs arrived and starting poking and prodding asking my friend questions, asking me questions and i start to come out of whatever it was. I felt like my heart was going to explode. It was beating so fast and hard that i literally thought it was going to jump straight out of my chest. 

A week prior to this i consulted with a cardiologist because i was having episodes of heart fluttering or feeling as if it had completely stopped. Now anyone who has had any issues with their heart can understand what i mean by i was scared for my life. Now having body aches and pains, stomach problems, orthopedic issues i can all handle but when there is something wrong with an organ that determines whether you live or die by its normal function.. thats a whole other story right there. 

Once again this part is pretty fuzzy but they gave me aspirin to take after taking some vitals and i couldn't even fully control my arm and the pills flung off the wall behind me. We tried again and finally got them in my mouth. I was taken by the stretcher to the ambulance and off to MGH we went. 

Side note: Why are ER nurses either the nicest people you have ever met or condescending bitches? I mean yes i am aware i got a heart monitor to watch for these episodes and NO i didn't use it. Oh i don't know when you're not fully conscious would you have been able to reach into your bag and do that? I don't think so either.

After seeing three doctors a slue of nurses and attendants i was taken for EKGs, chest x-rays, blood work and more blood work (they mixed up the tubes the first time around and conveniently forgot to mention this to me until i asked to leave three hours later...). They gave me a blood thinner and did another EKG and then put me on an IV drip. I sat there waiting for answers for hours. After a while i felt fine and wanted to go home. And if you have ever had to tell a nurse that you wont wait for them.. well thats a whole other level of sass right there. So my friend and i had left now it being the following morning. TO HAVE MY KEYS LOCKED IN MY CAR. My friends friend drove my car from TD Garden to MGH so we could pick it up after (which i am very appreciative of) but he didn't know my car is from the dinosaur ages and doesn't work normally. So after calling security to come open my car and several failed attempts later, it was finally unlocked and we were on the way home.

Later on that day i woke up at 3 or so after that shitty night i had and my chest was beyond sore. I was calling my cardiologist and primary care HOPING they weren't closed for Veterans day so i could see them ASAP to get some sort of answers from these tests. Nothing.. noting nothing nothing. 

Test after test didn't catch anything and i felt like shit and i was scared out of my mind. 

My primary took some blood and i pushed him to test me for Lymes disease because one of my friends has it and has simular issues and they were already going to run some other tests since the blood thinner and IV fluids would have messed up my previous results. 

and on Thursday i got the news. I have borrellia burgdoeferi (Lyme Disease), ehrlichiosis and babesia microti. 

So now to play the game good news bad news. 

Good: This may be a possible answer to all of my health issues

Bad: This may just be another empty diagnosis and treatment that leads to nothing changing.

Good: This may be the cause to the heart problems and after being treated it could all go away.

Bad: The medication is known to be super aggressive and make people very ill before seeing any improvement. (If you want to read about the special sort of hell i am going to put my body through over the next few weeks/months/year(s) please read this  )

Good:This is treatable and curable but it will take years for all side effects to go away.

Bad: Caught this years after i would have been infected so the complications and treatment are significantly higher.

Bad: Treatments by Lyme specialists are extremely expensive and not covered by insurance past the prescribed medication.

Well it seems i have more bad things to say about this diagnosis than good but i am pretty optimistic that this will make a change in the way i feel and the way my body behaves. 

For the time being i am taking it one day at a time and seeing how it goes. 

I start my first day of medication today (Saturday, November 16th, 2013) so i will be sure to keep everyone updated on that.

Hampton trip...

So i just realized that i never even told you guys about what happened in Hampton! I'm not sure how this one got missed...

Well basically what happened is C and i signed up to volunteer at the spartan race up in Amesbury sometime in august. We got stuck in a ton of traffic on the way up and by the time we got to park we were beyond late for our assignment. There was a huge screw up on the spartan race's park by lack of direction with the volunteers and then we had decided to head up to hampton and make it a beach day and then go back the following day to help break everything down.

We really had an amazing day just hanging out by the water, laying back and relaxing. We ended the day buying some fireworks and setting them off by the beach. Before we left to head back on the 90 minute drive home, we decided to stop and get something to eat. 

I saw a place i have been before and decided it was a good idea to stop there. We stopped at Ceal's clam shack. (Now mind you i have learned now that it is never a smart idea to eat at a shack/stand with food intolerances and allergies but unfortunately this lesson i had to apparently learn the hard way.) I almost squealed with excitement when i saw a little sign that said that they had Udi's gluten free rolls. When i went to order i told the woman i was allergic to gluten and she seemed to understand and put in our order. 

I was so excited that i even took a picture.. oh the irony

My plain hamburger on a udi's roll popped out of the other order window a few minutes later and i woofed that thing down like i haven't eaten in days. Within about five minutes my stomach started to get really upset. I knew something wasn't right...

So C started driving us back and i could feel my stomach starting to wrench and twist around. WHICH FEELS AWESOME. This was seriously the worst episode i have had in the past year by far. I was sitting in his car and with each passing moment i could feel myself getting more and more sick.

Sweating, fevering from hot to cold, hot to cold.

Feeling my stomach twist and turn.

And to be honest and a tad graphic i didn't know if i was going to straight up shit myself or throw up.

The poor guy kept asking if he needed to pull over. No no...

Now keep in mind we were still doing that hang out dating sort of thing then. And lets get real no one ever wants to go into explicit detail of what their body does to "evacuate" food when you are intolerant/allergic to it.

Anyways i don't really remember much except for sitting in his car crying with my hand over my face and repeatedly apologizing for having that happen and being completely mortified. We finally got to my house and i was completely delirious at this point. Rushed into the house and pretty sure i told him i would grab all of my stuff later.

C being the super nice guy that he is sent me a text shortly after making sure that i was okay.  A few weeks after this thats when he told me that was the day that he knew he really cared about me.

Needless to say i did not end up returning the following day. I was feeling the effects for about ten days after it happened. Sick to my stomach for the following three and bloating  weight gain and brain fog for the rest.

I followed up by calling the restaurant and letting them know what had happened. I wasn't mad (although i had every right to) i was more concerned that someone with a more severe allergy could have landed in the hospital. The manager was very kind and assured me that she would be re-educating her employees on food safety. 


Moral of the story/lessons learned:

1. NEVER EAT FROM A CLAM SHACK AGAIN

2. C is a keeper.

3.Finding places to eat out is becoming increasingly impossible with my ever growing food intolerances.

4. If at any time you are not sure about the safety of your food DO NOT hesitate to talk to the waitress, manager or chef.

I was feeling pretty good during the day and made this little thing in the sand. looks pretty neat eh?

September 25th 2013

So i don't even know where to being without ranting. Its been a long month full of lots of changes and new beginnings. 

So the good, the bad and the nasty.

The Good:

I have been seeing an amazing guy for a little while now who i can officially call my boyfriend. We'll call him "C" (out of respect for his privacy and i'm pretty sure he doesn't even read this blog...). He is amazingly supportive, a genuinely good guy and for some reason or another can put up with me and all of my health woes. FINALLY NOT SINGLE. Better yet that feeling of being 100% comfortable with someone and knowing that you completely support you. Nothing can really touch that feeling right now.

Oh and remember back when i got glutened in Hampton? Oh ya that was C in the car driving. That was 90 minutes of pure horror on my behalf sitting in that car mortified of having that episode with him being around. Well at the very least he knows full willingly what he got himself into haha. 

C and i got to spend a nice weekend up in Vermont at the Spartan race at Killington Mountain. I was so happy to have a stress free weekend away. I was really proud of my progress with my arm strength because for the first time i was able to do the monkey bars all by myself (saving my 30 burpees! yay!!) 

I have become an unstoppable trivia force and am seriously considering packing my bags and traveling around winning trivia everywhere i go. Just kidding. But seriously i have been winning trivia every tuesday for a while now and finally won some money on scratch tickets ($105 total!) plus i won a winter classic hoodie and tee shirt last week. winner winner.

I have stopped losing weight but i am super happy with the visual progress i have seen in my body from continuing to work out. (far left early Sept, middle is two weeks ago and far right is the day after the spartan race)


Lastly finally getting a grip on what foods i can have without dying. Close to coming to a point where i get what my diet is. Dessert hacks! I attempted to make "ice cream" from bananas. Well it didn't blend as well as i hoped and i added some almond milk and soon enough it ended up looking more like a frosty from wendy's than ice cream. Either way it was delicious and totally agreed with my tummy!

Frozen bananas, nutella, non dairy enjoy life chocolate chips and slivered almonds!

The Bad:

My stomach problems have only been getting worse. With every weekly trip to the doctors comes more medications, more diagnosis, more bills, more tests..more more more.

After seeing Karen (my naturopath) this past week i actually took a day off work today because i was sick. Sometimes after she does the manual lymph node drainage a day or two later i feel like death. Correction every time she does it this happens. It just gets worse like it is today when there are bugs going around. 

The Ugly:

As of this past week i was officially diagnosed as having celiac disease. Now this is a bittersweet diagnosis because i'm very glad to know whats wrong so i can make corrective changes to my life to get better. But on the other hand my tests for sensitivities and allergies are getting worse. Either that or i had an incorrect reading previously. Either way it makes me pretty concerned. 

Sick girl supplies at it finest 

After i get the lymph node drainage massage from Karen i get pretty sick unfortunately. Whats happening is that my body is physically releasing all of the toxins and sickness that was being held into my system. So basically it sucks more times than others when its flu season because otherwise i don't get sick it just comes full force all at once. So here i am home sick from work today writing this post. At least i'm being productive?.. ish?

Silly faces can heal your soul sometimes..maybe not but i enjoy making a goofy face anyways

Now don't get me wrong  over the past few months my attitude towards my health issues have greatly changed. I feel as if i have become more positive and confident in my decisions regarding my health. I have a great support system of friends who unfortunately share similar issues, a great boyfriend and a mom who is trying to understand. Surrounding yourself with good and understanding people is really the best advice i can give to anyone in a similar position.                                                                         

 I feel very optimistic for the future and even with my new diagnosis comes more life changes. This is all a process of learning and growing and i am more than thankful for everyday and for the people who are in my life. 

Nothing but love love love.

Until next time....
  

"Resetting your system"

Hello hello!


I was speaking with a friend about doing another "reset" of my diet since things have been declining recently. So i usually do a one of these following diets to help my system take a break.

GAPS (Gut and Psychology Syndrome)- This diet is primarily  used to help tame the symptoms of such psychological disorders like ADHD, ADD, Dyslexia, Autism, Depression, Anxiety and Schizophrenia.  As we all know because of the link between the neurological auto immune responses this diet in turn can help calm a lot of aggravation in your system.
GAPS diet is more than just a dietary change. In GAPS it is recommended to make certain lifestyle changes and add certain vitamins and supplements into your system (most of which is you have candidia or Leaky Gut you are already on).

GAPS requires that you DO NOT CONSUME the follow foods:

NO-NO FOODS:

• Added Sugars (agave, aspartame, corn syrup, nutra-sweet, dextrose or any sugar/sucrose of any kind)
• Dairy Products (cheese (goat or cow), Acidophilus milk, cottage cheese, cream or whey/casein/lactose)
• Junk foods (hot dogs, ice cream, soda, tapioca etc.)
• Grains (cereals, bulgur, couscous, buckwheat, wheatgerm, pasta, rye, rice, etc.)
• Beans (chick peas, black eyed beans etc.)
• Randoms (white potatoes, okra, pectin, sago, sherry, starch, turkey loaf etc.)

Click here for a full list of GAPS foods

For the most part those foods are common sense to avoid. I find that i no matter what always stay away from gluten and all dairy products because i have such a severe reaction. 

For the approved GAPS foods the basic rule it to get it as fresh and organic as possible to be able to get the most nutrients from your foods. 

YES FOODS:

• Berries (all kinds)
• Almonds
• Butter/Ghee
• Coconut (fresh, Shredded, dry no additives)
• Herbal Teas
• Lentils
• Gin, vodka (occasionally) 
• Lamb, Goose, Duck
• Fresh homemade yogurt

(See link above for full list)

Dr. Feingold's Diet-  So this elimination diet was designed specifically for children with ADHD. He believes that having synthetic additives in the diet that it can cause serious learning, behavioral and health effects for those who are sensitive. This diet specifically eliminates salicylates, added food dyes/colorings, aspartame and preservatives from the diet. (AKA. if it comes in a box more than likely you can't have it).

So Simple if it isn't fresh or have a ton of ingredients on the back of the box DON'T EAT IT.

FODMAPS (Fermentable Oligo-, Di and Mono-Saccharides, and Polyols)- Is an abbreviation for a collection of short chain carbohydrates found in many common foods. This diet is used to treat those with Irritable Bowel Syndrome (IBS/IBD) but has been found useful with those with conditions that leave their stomach sensitive. The idea is to eliminate these carbohydrates from the diet to relieve the amount of gas and liquid that collects in the small and large intestine which then leads to distention. 

This diet does not encourage eliminating major groups of food but rather the foods that can cause the most upset. Click here for a printable for the list of FODMAPS.

AIP (Auto Immune Protocol)- This diet is designed specifically to deal with Leaky Gut. This diet in my opinion is spot on for treating the aggravating factors for my stomach. I although (like a bad girl) do not follow AIP along with Paleo 100% of the time. I personally love my eggs in the morning and my tequila to end my week. I do however not do this every week and i refer to the AIP when my stomach needs a "reset". Now keep in mind that this is in conjunction with the Paleo diet so that means ghee= good (gluten/dairy/grains/added sugars are all a no as well). My favorite book Practical Paleo by Diane Sanfilippo goes into great detail in the auto immune section about why these are to be avoided. 

NO NO FOODS:

• Eggs
• Nuts
• Seeds (cocoa, coffee, seed-based spices as well)
• Nightshades (Potatoes, tomatoes, eggplants, sweet and hot peppers & spices derived from peppers.
• Alcohol
• NSAIDS (like aspirin or ibuprofen)

I find that unfortunately for the most part this is all a guessing game in figuring out what works best for you and your body.

As always email me with any questions or comment below if you have any experience with any of these diets! 

That last post was me being a negative Nancy so i'm going to try and pull things around this time haha. So things sadly have not improved much since i last wrote. 

I spoke to a few of my friends regarding my new symptoms (in which all either have AI disorders or stomach issues unknown). Recently i find that there is a disconnect from my head and my body. I know this sounds weird and bare with me while i try to explain myself the best i can. I feel as if there is no connection between the two. Any incident that happens with one does not effect the other as if they are two separate entities. Another new thing thats been happening is i feel an out of body experience and almost feel like i'm watching things happen as if i'm on auto-pilot. Anyone else out there feel that way? Not that i don't feel like i can control what i am doing in the moment just that i'm removed from the situation.

Anyways i am slowly working down my list of foods to something a bit more concrete. One saving grace is that my organic lemonade from whole foods and espalon blanco tequila makes me very happy!

I recently tried out this margarita mix with the lemonade and tequila and it was quite delicious!

So i think i am FINALLY over the carbs "hump". I feel like i no longer crave that entenmanns raspberry danish or those coffee cake slices when i go to Panera. I means its really all about the small victories anyways right?

But i do find that because of the allergies and diet that its been hard to regulate my blood sugar and i find myself crashing. For the time being there is no developments in that area sadly. So i carry about little unjunked candy bars and jolly ranchers for when i start to dip a little too low. 

So i think i am finally over losing weight now too. Its been a month and my weight is slowly creeping up. For the first time in a long time i am totally okay with this. I started to take my weight lifting a little less intense and eat more protein immediately after i work out so i don't miss the anabolic window. Theres no complaints on that because i found a Luna protein bar thats GLUTEN FREE and not to mention freakin delicious!

Lastly i went on a spur of the moment adventure with a friend to Mystic Seaport last week and got the chance to spend a day outside kayaking and checking out some cool old building in the sea port. 

We went out to eat at this amazing Vegan/Vegetarian restaurant called Kate's Cafe. I literally can't say enough. I spent the whole meal freaking out that i could literally have anything on their menu. All dairy/gluten free and whatever was made with soy was clearly labeled  I don't think people really understand how amazing it is when i go somewhere and this happened. But i seriously ate like it was my last meal. It was gluten free foccia bread, sweet potato fries, roasted red peppers and portabello mushrooms. 

PHENOMENAL. 

Oh and lastly how could i have forgotten? I signed up for a 100 mile virtual race challenge from Dirt in Your Skirt a while back. You run 100 miles from Memorial day to Labor Day. Well i did it and got a fancy belt buckle/medal to add to my growing pile!

Till next time :)

Not so Happy Birthday to Me :(

Hello everyone! First off today is my birthday and i wish i had better news to share about whats been going on. I wish i could say that i haven't been writing was because i've been so busy being happy and healthy elsewhere but sadly that is not the truth. 

All my AIP/Paleo peeps can feel me on this one..

The past couple months i have been getting worse. I gained a few pounds (165 to 168) and my health seems to be drastically declining. My sleeping patterns have become really erratic or non existent. My adrenal glands are way overactive and stressed and my thyroid is being lethargic. My sugar levels have been insanely low, along with my magnesium, calcium, iron and zinc all being in a funk. She also thinks that i may have a gene mutation called MTHFR (Methylenetetrahydrofolate Reductase) that would account for my thyroid being funky and having serious adrenal gland issues. I have been to two of my doctors over the past week and lets just say i'm tired of hearing bad news. I was in such a good mood for a long time. Happy with the insane progress i have made and the changes seemed to really be paying off in all aspects of my life.  

About three weeks ago i started to notice my sleep was getting really bad. I was consistently waking up late for work and it was clearly impacting my energy levels throughout the day when i was sleeping a shoddy four hours a night (more if i was lucky). I was going to the gym every day after work after working 12 hours three days a week and two four hour days. I feel like any time i find things start to go well my body has other plans. Can we all remember that like two seconds i had abs? That was pretty cool..

The apple cider vinegar that i was taking (which is UH-mazing for de-bloating) was now giving me sever migraines  I am now on all sorts of new medications! YAY. (i will post names and pictures later i just don't have them on me right now). Lastly i have upped my medications for the enzymes and probiotics to double aka (3 or 4 pills of enzymes every time i eat-depending on how heavy or large my meal is; 1/2 tsp probiotics twice a day).

So now here i am. On my 22nd birthday, slowly slipping back from all the progress i worked so hard for. So forgive me for bitching a bit because i am pissed. It has taken me a very long time to "come to terms" with the fact that my body does whatever it wants, whenever it wants without consulting me...and it sucks. So i'm a little bitter and pissed off today. And god forbid i actually would be able to drown my sorrows in some german chocolate cake or half baked froyo because we all know that would end in me rolling around on the ground swearing and crying.

Thank you Leaky Gut for proving that i am your bitch.

Happy birthday right?