Mystery Illness – My Old Notes

I have a really old laptop, you know, the ones that could be easily mistaken for a TV …. it’s huge! It doesn’t really work all that well .. so my husband and I just put it away and haven’t used it in 3 years.

I’ll get back to the computer story here in a minute, but I started a new herb two weeks ago and at only one drop it has been making me feel pretty icky. I haven’t left the house much lately because of my health and because we have been having glorious weather (by glorious I mean never ending snow) here in MN. Any folks down south want to take in a sick gal? my achy body needs warm weather!!!

But, I digress, let’s get back to the story …

I have been on a looking through old photos kick lately and decided to take my old laptop out and look through some of the old photos that are in it, as I was doing that I stumbled upon a file called Mystery Illness and I thought to myself “NO WAY”!! When my symptoms began 3 years ago, my primary then didn’t know what was going on with me, so I decided to type out dates, what I was doing then and what my symptoms were for him so he could help me figure what was going on with me. I thought I deleted the file years ago but apparently I didn’t!!

{Sigh} It brought back so many emotions … I remember where I was sitting when I was typing it, I remember the anxiety and the frustration, I remember my arms feeling so weak while my fingers tapped on the keyboard and tears of sadness and desperation silently rolled down my cheeks.

Here it is, copied from my old computer (I did remove the doctors names that were caring for me at that time):

September: Went to the ER for Severe lower left abdominal pain, diarrhea and nausea. Doctor diagnosed me with an Enterovirus.

Oct. 8: Went camping.

Oct. 12-13: Went to cabin.

Oct. 14: Went to Duluth – Woke up around 3:00am with upper left abdominal pain and nausea.

Oct. 15: Duluth – Woke up around 3:30am with excruciating upper left abdominal pain and nausea. I made myself vomit and the stomach pain went away.

Oct. 16: Felt sick and weak all day.

Oct. 17: I called to make an appointment for my stomach pain, but they insisted I go to urgent care/ER.

* Made a follow up that week with Dr. and she prescribed me medication for GERD.

* Symptoms did not get any better. On and off dizziness.

Oct. 29: Felt very sick all day. Stomach pain, nausea and headaches.

Oct. 30: Felt the same as the day before.

Oct. 31: Woke up with severe pressure in my head. Did not get any better after taking Ibuprofen or extra strength Tylenol.

* Went to Dr. that week and mentioned the pressure in my head. She looked in my ears and said I had fluid buildup in my ears and later prescribed me Tramadol.

* The following week, I was riding in the car with my husband one night and I noticed the street lights hurt my eyes so bad I had to put my head down.

* That same week, I was watching TV one night and I felt an odd sensation in my head, almost like a crawling feeling. It was very uncomfortable and weird.

* Made an appointment with Dr. that following week and he noticed my sinuses were very clogged. He prescribed me steroids and over the counter medication.

* Started steroids that Friday and felt instant relief with the pressure in my head.

* Saturday night – Right when I was about to lay my head down, I felt as if my scalp was burning. Since then, it has been painful to sleep on the left side of my head and on my back. Also, the left side of my scalp has been very sensitive to touch.

Symptoms:

Headaches – the pain varies from spot to spot. At time, pressure in my temples. Shooting pain on the left side of my head and the back left side of my head. Sometimes pain behind both ears.

Extreme nausea.

Some abdominal pain but not severe like it used to be.

Cooling/pain sensation on my left temple and left side of my neck.

Shooting pain in my spine.

Odd sensation back of the head and shoulders.

On and off twitching in my left eye, and left side of my lip.

Tingling and odd sensation in my left arm and left leg. (I noticed while carrying plates at my work, my left hand felt weak. It was hard for me to carry three plates at once, and I had been doing that just fine for the past year)

Pain in my left eye at times.

Pain in left jaw at times.

Tingling in my left cheek at times.

Very fatigued (towards the end of the night, I am very very tired. I almost feel like I am drunk)

* Something that has been really bothering me, and it might sound stupid but normally I am a very good speller, however, lately I noticed it takes me a little while longer to figure out how to spell a simple word.

I hate to mention I went camping (never sprayed any tick repellent or anything) in August of that year as well (a month before my symptoms started).

After I gave my Dr. these notes, he ran an ELISA test and sure enough a positive babesia (ding ding ding), but I was only treated for one week and then 50 more symptoms showed up after that!! I completely forgot I had some of these symptoms, so It is a good reminder to look back and see what has improved and what hasn’t!! This made me want to write down my current symptoms so I can look back a year or so from now and see what has improved and what hasn’t!!

Blessings & Love,

Aisha 🙂

Advertisements

Acupuncture: My Thoughts

Warning: I have been having major brain fog and I just feel like my brain hasn’t been functioning well lately (my husband would say “just lately??”), so if I misspell any words or if sentences don’t flow correctly, that is why!!! 

I have been meaning to write a post about acupuncture and what I thought of it, but I wanted to wait a while to see if it is or isn’t working for me.

I started Acupuncture sometime in November and I did notice little improvements right away but it took about a month to see major improvements. It was really great to see, because honestly, I did not believe in acupuncture at all prior to trying it, It just seemed too weird that poking people with tiny needles would help alleviate symptoms … but, it really does work!!!

It helped-

My mood, anxiety (this one was huge for me), pain, sleep (slept like a baby most days), balance, nerve issues, headaches and my legs felt stronger. 

Finding a good acupuncturist is HUGE. My acupuncturist is amazing, she has been doing it for 30 some years and she knows A LOT, not just with acupuncture but with herbals, supplements and nutrition. I saw her in January sometime and she dropped a bomb on me telling me she was going to Florida for a vacation for a few months and that another gal was going to replace her for those few months … my heart almost stopped!! She knew so much about me and my illness and knew just what I needed … I was really bummed out. 

I made an appointment with the new gal. First time was eh, okay … she only had two years experience and seemed very nervous around me, which made me extremely nervous. I thought I would give her a second try, maybe she needed to get used to me or something. The next appointment was pretty awful … I was lying on the bed and she put a needle in my wrist and she clearly hit a nerve with the needle because my hand stung soo bad (it’s a weird painful vibrating sensation) and I screamed so loud. She tried doing it again, but on the other wrist .. that one went in okay, but it still felt kinda weird. Same thing happened to my leg and she moved the location of that needle to the other leg. So I am lying there with 13 needles sticking out of my body and all of sudden my arms and legs were throbbing with horrible pain, shooting pain going up my leg and up my arm, involuntary thumb movement .. and I started to panic!!! I was alone in the room, she had just left to the room next door to me, which meant I was in the room for another 20 minutes!!!

I started bagging on the wall … nothing … I yelled out her name “RACHEL RACHEL” … nothing!! I finally got up with all needles sticking out of my body and walked out the room. My appointments are in a center where there is yoga, fitness, a hair salon and more … so outside the rooms people were roaming the halls and what not (why the heck didn’t anyone hear me when I was screaming bloody murder?). I walk out there with needles sticking out of my ears, face, head, arms, legs and feet … people were just staring at me like an alien had just walked out of the room. Rachel (the acupuncturist) was frazzled when she saw me … she rushed me back into the room and apologized and even offered to rub my legs and feet, but I just wanted to get the heck out of there!!

Sorry, that was a long story, but I just had to share!!

Anyway, find a good acupuncturist if you are considering trying it!!

I haven’t done acupuncture in 3 weeks now and I can definitely tell the difference, and unfortunately, I won’t be going back to it until March sometime!

The gist of this post is that I totally recommend acupuncture! However, If you just started treating Lyme and co’s, I would wait until you’re further into treatment and your nervous system is more calm!! 

Blessings & Love,

Aisha 🙂

 

 

 

10 Crazy Comments: Don’t Say These To A Lyme Patient

I was thinking the other day at some things people have said to me (doctors, nurses, friends, strangers and family members) over the past three years …. and you guys, they made me chuckle … loud!

IF THEY ONLY KNEW!!!!!!

So, here are some things that were said to me, and I am sure you can all relate to a few of them … or all of them!

1- But, you don’t look sick. 

I think we have all heard this one and it drives me crazy!!! I am not sure if it is a compliment or if they are hinting in a nice/weird way that I am not really sick because I am physically not showing any symptoms. I never know if I should say “thank you” or “oh, but I feel really rotten on the inside.” A friend of mine told me she saw a bumper sticker once that read “if I looked like I felt I’d scare your children”, and that pretty much sums it all up.

2- What is Babesia? is it a skin infection?

FYI, this came out of a nurses’ mouth!!! My response to her “very close actually, it is a malaria-like parasitic disease that infects the red blood cells … it almost put me in a wheel chair.” Complete silence on her end!!

3- Maybe you just need to get out of the house.

I mean, I don’t know about you, but I really really enjoy laying on the couch with my robe and pajama pants on all day, feeling utterly useless, my hair looking like I was electrocuted in my sleep, bags under my eyes and groaning because of how much pain I am in!! Trust me, if I COULD get out I WOULD!!!!

4- Maybe you need to exercise. 

Imagine having the flu, feeling hungover (for no apparent reason) and got hit by a huge semi! Yep, that’s what we feel like most days. If you want to avoid a bart-raged woman or man (and trust me, you do) do not tell them maybe they need to exercise!!

5- Are you drinking enough water?

This is not the flu guys!!!

6- Maybe if you get pregnant it will go away.

BAHAHAH! That is all I have to say to this one.

7- There’s no way you have Babesiosis, it is very very rare and most commonly found in animals. (ER doctor)

Well, that brings me so much comfort that this illness is being acknowledged in animals but not humans! Cool Beans!

9- You want to believe you have Lyme, but that’s not what you have.

I mean, having Lyme Disease is the “in thing” now a days, why would I not want to have it!?

10- Are you sure you are just not depressed?

“Father, I am bart-raging right now. Breath peace in me, Lord”

 

I know people have said some crazyyyy things to you, if you feel comfortable enough to share them here, I would love to hear them!! 🙂

Blessings & Love,

Aisha

 

GF Oatmeal Cookies

I know a lot of Lyme patients are on a strict diet.

For me, it can be incredibly frustrating trying to find recipes that are GF, sugar free, dairy free and at the same time ones that taste good! Let’s be real here, some GF foods/recipes out there are gross, y’all!! I bought GF pasta a while back and I was literally gagging while eating it. Thankfully, I found some awesome GF pasta that tastes great!

Anywho

I found this awesome GF, vegan, refined sugar free, soy and dairy free oatmeal cookies recipe … and they are sooo yummy!!! My husband is a picky eater and he devoured them! So, I thought I would share it with you all, since there are a lot of things out there that we can’t eat!

  • 1 1/2 cups uncooked GF rolled oats
  • 3/4 cups All-Purpose GF Flour
  • 1/4 tsp cinnamon
  • 1/4 tsp baking soda
  • pinch salt
  • 1/2 cup maple syrup
  • 1/4 cup Canola oil {I used coconut oil}
  • 1/4 tsp vanilla
  • 1 Tbsp ground flaxseed
  • About 3/4 of a medium banana
  • 1/2 cup raisins

Mix all ingredients really well {make sure there aren’t any banana chunks}. I used a spoon to transfer the cookie dough onto the baking sheet. Bake at 375 for 7-10 minutes, until they are a light golden brown color!

And Voila!

Hope y’all enjoy them!!!

Aish

The Walking Lymies

I got a glimpse of myself as I was walking by our bedroom mirror the other morning, and I was frazzled.

It was a bad morning!

I had the Lyme hangover (you, Lyme friends, know what I am talking about)… it felt like a big semi ran over my body 10 times the night before!

I woke up from bed and my hair looked like a I was rocking out hard in my sleep … it was everywhere. Beautiful (not really) fluffy bags under my eyes. Pale skin. Zits the size of a golf ball on my face (why on earth am I breaking out at the age of 28?!?) … I mean my husband couldn’t get any luckier! My golly he scored big time!

I knew I resembled someone when I saw myself in the mirror, but I couldn’t pin-point who it was!

And then it hit me ….

I looked like the walkers from The Walking Dead … the resemblance was uncanny!!

The hair .. identical. The Stance … identical. The walk … identical. Too bad we didn’t hear about the auditions for the part earlier on. We wouldn’t need all that makeup they put on their faces, we would just have to wake up from a herx and TADA … we look like walkers!!

Fellow Lymies, I think we found ourselves a job to pay for the copious amount of meds, herbals, supps, doc appointments and not to mention, therapy, because this illness makes you go totally crazy!!!

Watch out Hollywood, here comes The Walking Lymies!!!

 

 

 

 

 

 

What Did You Say?!

This has been my husbands favorite sentence all week.

My neurological issues scare me quite a bit, but this time I couldn’t help but laugh at some of the things I have been saying recently.

My sweet husband would look at me with a concerned/baffled/feel sorry for me face and I would just vomit out Lyme words that would make absolutely no sense!!

Here’s a quick story for you –

We have been having a hard time finding a Church here in our new hometown. So, Saturday night, we talked about watching Dr. Charles Stanley on TV Sunday morning. The following day, My husband was sitting on the couch, and as I was walking out of our bedroom I say … wait for it … wait for it … “Hey honey, did you want Dr. Charles Stanley for lunch?” … my husband, for the 100th time this week, says “what did you say?!?!”, we both look at each other quietly and burst into laughter. He then proceeds with “no no, Dr. Charles Stanley doesn’t really sound that good for lunch .. thanks though.”

I originally wanted to say “Hey honey, did you want to watch Dr. Charles Stanley this morning?”  I have no idea where the lunch part came from nor was I thinking about lunch, or anything that pertains to food for that matter!

I started feeling very ill Monday morning with extreme vertigo, AWFUL headaches, stomach issues and extreme fatigue. I thought I was herxing really bad, relapsing, or coming down with a nasty bug. A few days ago, both my husband and I smelt something funky in the basement. My husband calls for someone right away to come check it out, and come to find out, we had two gas leaks in our home – that’s the last thing my body needs right now! It was fixed that night, but I left and spent the night at my in-laws house and sure enough, the headaches and all that stuff went away the next day!!

Anyways, so I keep telling my husband my brain was being filled with toxic gas this past week and that is why I was saying all these weird words! 😉

I know how scary it can be with these neurological issues – memory loss, word retrieval and all that stuff – it can be extremely depressing and frightening, but sometime it is good to just laugh at it rather than dwell on it. For me, it feels like a small victory against this illness!

This might sound really strange to you all but sometimes (not in public or out loud .. I promise:)) I talk to the Lyme and Co’s (which by the way, I am certain they are somehow related to the devil … cousins or siblings … especially Babesia). Yesterday, for example, as I walked away from my hubby after our laughing attack, in my mind I said “I bet you didn’t see that coming, you nasty little things.” Other times, on days where I feel like this illness is trying really hard to get to me I would say to it “you have no control over my body or mind.” Our minds are sooo powerful, you guys …  it creates reality in a ‘sense’!! The way we think determines what we can and can’t see or do. We have a huge advantage over this rotten illness … let’s use it!

Last year I would have been bumming out big time for messing up my words as much as I have in the past week. I would have went on and on about me not sounding smart and it would have spiraled into a sobbing fest.

Let’s try these together –

If you can’t retain any information while you are conversing with someone, just say “wow, that is crazy” like I do 🙂

If you are driving and forget whether the turn signal goes down or up for left or right turns – it is okay – just put your hazard lights on. (this totally happened by the way)

On a serious note, no matter how weird we may sound or act … let’s add a little humor to it and laugh at ourselves! I am not going to let this illness win and neither are you!

Small victories, my friends … small victories!

“With enough small victories one can overcome impossible opposition and odds”

 

 

 

 

 

 

 

 

 

 

House, Health & Acupuncture

Yay! I survived the move!!

The past few months have been crazy busy, especially the past few weeks. We moved in to our home two Wednesday’s ago … we had to unpack, clean (my mother in law did most of it) & more unpacking … it felt like it was never ending and honestly, it still feels that way! I went up to Duluth two weekends ago because my sisters longtime boyfriend was planning a surprise proposal. Also, this past weekend my husband and I drove down to Rochester because both of us were in a wedding … so, yeah, it has been a little nuts lately!!

So, what is going on with my health?

Well, I am still on Takuna & A-bart. Now that life is slowing down a bit, I upped my Takuna dose to 2 drops and once I stop herxing from it I will add Quina (Microbial Defense) and Enula (for Babesia). My LLMD thinks I still have some Babesia in me – I treated babs (short cut for babesia) for a year with Mepron & Azithromycin, I was also on Minocycline (not sure if it hits babs or not), anyways, she thinks my treatment for babs wasn’t long enough and the meds weren’t enough. So, here I go again with babs treatment. To be honest with you, I am petrified to start Enula because I had the worst herxes from treating babs. The herxes were stroke like symptoms … VERY VERY scary. I was also the most depressed I had ever been when I was treating babesia … it was a very scary time in my life! I am praying that I will react differently this time around because a) they are herbals and b) I am hoping my babesia load is down, so I won’t herx as bad …. we shall see!!!

I started a sublingual b12 methylcobalamin a month ago because of the C677t gene mutation that I have, and I can say that I have noticed a bit of a difference in my energy. I am still looking for someone who is able to interpret my raw data from my 23andme results so I can figure out what supplements work for me and which ones don’t!

I did acupuncture for the first time last week. I had heard mixed reviews about getting acupuncture done while having Lyme and Co-infections, so, I wanted to experience it myself and see what it was all about.

It was strange … very very strange.

The acupuncturist touched spots on my feet, legs, stomach, arms, hands, head and ears and by doing that she could tell what was going on in my body!! It was crazy! My liver is good, my gallbladder is good, something is goofy with my spleen and my large intestine and of course my immune system is bad.

Prior to this, I filled out a symptom checklist and, no joke, I almost checked off every symptom on the list. She looked at it and said “yikes” and in my mind I said “lady, I feel so sorry for you because you have a handful.”

She put the needles in my feet, legs, hands, arms, ears and hands. Shockingly, they didn’t hurt, but they felt a little weird! Then, she put a hypothermia blanket on me and told me to nap for 20 minutes. I thought she was joking – how can someone nap looking like that?!?!

As she exited the room I had a giggling attack because I thought I looked ridiculous … oh, at what length some people (me) will go for their health!!!

I felt very odd the first 5 minutes into it. Heart palpitation, weird sensations in my body, vertigo – basically a lot of my symptoms were heightened. I was very tempted to exist the room and walk next door (to her office) and ask her to take the pins out of my body, but I thought that would make me look even more ridiculous. Fifteen minutes into it I became extremely sleepy and the sleepiness/fatigue/vertigo continued for several hours after my appointment, but after that I had an enormous amount of energy!

Since then, the ringing in my ears have diminished, my anxiety has been less this week & I feel happier! I see her again this Thursday … slightly dreading it because of how I felt the first 5 minutes, but, if it will help me get better, then it is definitely worth it!!

Blessings & Love,

Aisha 🙂

 

The Long Windy Road

Image

“But all along this hazardous, twisted road that doesn’t let you see very far ahead there are frequent signs that say, ‘the best is yet to come.’ And at the bottom right corner written with an unmistakable hand are the words, ‘as I live, says the Lord!’ ” John Piper

We will overcome, because He has overcome!!!

Blessings & Love,

Aish

Health Update – New Meds, New Doc …

I saw my new doctor almost a month ago … shame on me for not updating sooner!!

My hubby and I are in the process of building a home (should be done in a few weeks here :]) and we moved in with my in laws this past weekend. I had to start packing a few weeks before moving out because my body can’t handle doing it all at once, so, let’s just say I was REALLY busy!!

Anywho, my appointment went really good. My new doctor is great and I think she is going to be the one that will get me better! She has extensive knowledge in Lyme and Co’s, she knew about the gene mutation (c677t), she is great with nutrition. She knows a lot about supplements, naturals, and antibiotics (even though I want to stay away from antibiotic use for the time being). She is great!!

My treatment plan – I am to continue taking A-bart (2 drops in the day, 1 drop at night). She added Takuna (anti-bacterial, anti-fungal, anti-viral) 2 drops in the morning, just for now, and Bentonite Clay (2 capsules before bedtime). I am on a ton of supps – fish oil, magnesium, vitamin-c, b-12 (methycobalamin) my body can’t break down b12 because of my gene mutation so I take this kind of b12, Bioavailable Folate (quatrefolic) my body doesn’t make enough folic acid and doesn’t break it down either so I take this kind, vitamin D3 and some probiotics.

I didn’t start any of the new stuff until a week after my appointment because I felt pretty awful after coming back from Wisconsin. I was sleeping all day, felt super weak .. I just did not feel right. My mind was running wild with thoughts like “what if Lyme Disease is airborne now? especially since Lyme is endemic in WI” or “It was that mosquito that stung me … I probably have West Nile virus on top of all the other junk I have … great”. I went to the doctor and got some blood work done. My WBC were low and Lymphocytes were slightly elevated, the doctor said I probably had a viral infection going on. I was freaking out because last time my blood work was like this was when I had “flu like” symptoms at the beginning of my lyme journey. I emailed my primary (very very lyme friendly) four days later and told her what was going on and she put in an order for me to get my WBC and Lymphocytes rechecked. Thankfully, they were normal, but a few days after that I got a nasty cold and cough that lasted about a week (I guess there was a bad virus going on). I am better, but my gosh I felt really sick for a few weeks there. On top of that, I was herxing from starting the new meds … awful combo!!!

So here I am now, crossing my fingers all this works. She will be adding more things and upping the drops slowly down the road!!

I am constantly being reminded of God’s goodness. This time last year we were living with my brother-in-law and I seriously thought we were going to be living with him for years because of the circumstances we were in. Now, my wonderful/hard working husband and I are building our first home together. I am very very thankful!!

He is so good.

Blessings & love,

Aish 🙂

 

10 Crazy Things I Do Because of Lyme

I was thinking the other day how coo coo this illness has made me, and I couldn’t help but chuckle.

I don’t know if you all can relate or not, but here are some things I realized I have been doing since being ill with Lyme and Co’s … please don’t judge haha!

1- I carry a tick/mosquito repellent with me EVERYWHERE I go.

2- During spring and summer, I vacuum everyday, sometimes twice.

3- I am pretty sure I know how many moles I have on my body.

4- If my husband is anywhere near a woodsy area, I have him take his clothes off in the entry way and put his clothes in a bag so I can wash them, and he goes straight to the shower …. bless him 🙂

5- I write Lyme instead of lime on my grocery list.

6- I’m sorry, but Julia Roberts and all those actresses have nothing on Lyme patients. I could feel completely awful but still attend a family function and force myself to look and act as if I have nothing wrong with me … all with a smile on my face. We deserve an Oscar.

7- If I am conversing with someone and you hear me saying “that’s crazy” a lot … it is most likely because I am not a 100% listening to what they are are saying, because I am thinking about the 100 crazy symptoms that are going in my body, like “O crap, was that my heart that just skipped a beat? am I having a heart attack?” “Did my eye and face just twitch uncontrollably? Am I going to have bells palsy?”  … and trying my best not to fall off the chair!

8- I have a box of surgical masks in my cupboard for when I clean, because I can’t handle the smell of cleaning products. My husband and I live in an apartment and we have hard water which makes it harder to clean things. Well, one night we both tried to tackle the tub and we used almost every cleaning product we had. I had the mask on the entire time. I kept it on a little while longer and watched some TV with it, waiting for the smell to go away …  my husband could not stop laughing and he, of course, had to take a photo of me. I would post it on here, but it is kind of embarrassing!

9- I mix up my words soo much. I am not sure if it is funny or scary. For example, I was trying to explain where a store was to my husband and I said “It is next to Good Sporting Dick’s” instead of Dick’s Sporting Goods.

10- Once I have a yard. I will be that crazy neighbor walking in my backyard with stilts on … I think I need prayers haha!

I am sure there is more … but my Lyme brain froze! I am sure some of you can relate to these … I would love to hear some of the coo coo things you guys do because of this illness!! 🙂

 

Blessings & Love,

Aish