lymed out

my quest to getting these suckas out!

Humaworm Parasite Cleanse {Day 1~7}


1-7

That whole Spinal Tap and Blood Patch ordeal set me back a few weeks, but cheers to another round of human guinea pig starring ME. Here is the scoop:

  • To read up on what all this Humaworm stuff is about, read my previous post.
  • After 1.5 years of taking Lyme meds, I am on a 30 day antibiotic break ok’d by my Lyme Doc.  
  • With Humaworm, you take it 12 hours apart. 1/2 before breakfast and 1/2 before dinner on an empty stomach so that the buggers eat the herbs and die. Make sure you drink at least 8 cups of water all day to flush out toxins and to avoid constipation.
  • I also forced got Husband to take it with me, however he started 2 days after me.
  • I am not paid to write this post nor review it. Visit Humaworm for more info and see what types of herbs they pack into this tiny little capsule.

OUR STATS:

ME: I am a 38 year old female, 5 foot 1 and about 114 pounds. Have been in Lyme treatment for 1.5 years after 2 years of mysterious symptoms. Am currently at about 90-95% recovery.
HUSBAND: He is a 39 year old male 5 foot 11 about 210 pounds. History of asthma, seasonal allergies, shellfish allergy and sinus and nasal issues. He says that he normally breathes through one nostril at a time. Had surgery for deviated septum in 2002. Has an iron clad stomach and can pound down any food related competition involving burgers. However early in Jan 2013, he went to Haiti for business and most likely brought back a friend because he was sick for a week (despite the $350 vaccinations). To sum it up, he said it felt like a samurai sword was going through his stomach. Other than that, no major health issues.


Day 1
Me: 
Normal BM in the am however I don’t think that the Humaworm worked into my system then. Did some errands and then in the afternoon felt very sick to my stomach. It could be the herx that I am going through from my acupuncture detox the last week because I have been on a steady herx now for about 4 days and today was the worse. In and out I felt like vomiting, then I was hungry, then I felt barfy. It’s hard to distinguish but I am guessing it’s herx symptoms. At about 4 pm, had a headache and needed to lie down.

Day 2
Me: 
Had 3 BM’s in the morning, (ya I know! not normal for me!) Much better today however very gassy. Like I swallowed a box of air. Was scared I couldn’t make it to this thing I had to do, but I persevered and went which is about 50km from my house with no emergency washroom trips that I was anticipating. A little bit dizzy and drunk but who knows if it’s from Lyme.

Day 3
Me:
Some vertigo is coming back, but different type of vertigo. I don’t get the heartburn that alot of people complain about. I have drinking water like crazy and I didn’t have a BM today and I am quite scared because “they” say that you should have 3 BM’s a day while on Humaworm. I don’t see how that is physically possible since I don’t eat alot, but if you are backed up, then you should do an enema and there’s no way I am going to try that. I will stick with my sauna detoxes and water. I also had in and out bits of nausea, and some weird tingling in legs. Not sure if this is the Humworm, or the fact that I have now been off meds for 3 days or if it’s Lyme related. This peeing thing is working my last nerve. As soon as I go and finish, I go do whatever I have to do, then have to go again. This is worse than pregnancy urination.

Husband Day 1: He had a headache coming on before he woke up, then took the 2 pills at 7 am, then the headache got progressively worse and at 2:30pm he was couch bound for about 3 hours leaving me to entertain 6 year old. Is it related to Humaworm? I don’t know. Does it work that fast on Day 1? Does that mean he is really toxic? He has never done a cleanse before.

Day 4
Me:
I was all concerned last night because on Day 3, I didn’t have a BM, so I was googling until 11:30pm about this, and this, and this, and wondering how on earth I’m going to execute it and what would happen if 6 year old accidentally walks into the bathroom and starts questioning why I’m lying on the floor with a tube shoved up my butt. Good news is that I did have a small BM in this morning at 6:45am, although it was kind of forced due to my paranoia. I got 6 year old to school at 7:15am and went back to bed for half hour. Then had the urge to go to the loo. I was ecstatic! I was set and ready to see creepy critters, but there was nothing out of the ordinary. After my shower I felt very good, just some minor vertigo again. Went out and did errands.

Husband Day 2: Poor guy didn’t get off the couch from the day before. He went straight to bed with that massive headache and didn’t wake up until 7:00am this morning. He must have take 8 tylenols. He still doesn’t believe that the Humaworm can work that fast. But again, he’s never had a headache that landed him in bed for 16 hours. He also said his mouth felt like a garbage truck. This is definitely a Humaworm thing because it makes your tongue feel rotten. He went about his day, did some meetings at work, called me on the way home saying the headache is coming back, came home at about 5:00pm and went to bed. Our friends wanted to see a movie with them but I said “No can do, Husband is in bed fatigued and headached“. I was asked what happened. I said “A worm is mighty pissed!!!“. I kept asking him if he wanted to go to the ER and he looked really sly and said “Why they are going to ask me what I am taking, and I am going to say that I bought these herbal pills online. Then they might go ahead and do a spinal tap.” I wasn’t amused. The night dose, he halfed the dose to only 1 pill.

Day 5
Me: 
I had a normal BM in the morning and I think I saw something but I was so grossed out, I didn’t look further. I’ve been feeling a bit of tremors and body vibrations again. I am still on full dose.
Husband Day 3:
He took 1 pill instead of 2 this morning. Headache is still probably about a 2/10. We debated why he has been hit hard, and I had hardly anything happen yet. I think it’s because I have been in some type of treatment for 1.5 years and maybe my bacteria load is down? It was a PA day, so 6 year old was home, we took him to play some glow in the dark mini golf and then saw Cloudy with a Chance of Meatballs 2 in the afternoon, I felt nauseous for about an hour, Husband’s headache was ramping up but tolerable. Evening dose for him was again 1 pill.

Day 6
Me:
Nothing out of the ordinary. Same thing.
Husband Day 4:
Is still at half a dose. Headache is still a 2/10.

Day 7
Me: Today, we had a very busy day starting off at 9 am. Church then his whole fam came over for Thanksgiving dinner. I am trying to still take my supplements, but I have kind of let that slide. It was a draining day and at about 9pm, I felt kind of sick. I drank maybe 2 glasses of water all day which maybe why.
Husband Day 5: 
Still at half dose. He is scared to up to full dose. You can safely say that he now has had a headache without any relief since beginning. I told him that I don’t think he can stay at half dose for the 30 days, that would kinda defeat the purpose. I was scared that he would only upset his worms and then they would become resistant. He wasn’t understanding why the worms liked his head and I told him that I think that they go for the weakest part of your body. (I am only saying this because I remember my Holistic Lyme guy saying that Lyme attacks your weakest link). Which makes sense because he has bad allergies and sinus issues. Anyway, I emailed Humaworm about the half dose and am waiting for a response.
*UPDATE* Humaworm’s Response – “… the 60 days should be effective. Just takes longer. Perhaps, after two weeks, on off days he can increase the dose to see if it is better… I am so sorry that he has experienced the headaches…. “

SUMMARY OF WEEK 1

ME: I went head on at full dose the whole week. I have been having these tingly sensations. Like detox tingly sensations that seems like pathways are being opened. The other times I have experienced this is the first time I did this Liver Cleanse 4 years ago (Pre-Lyme) to get rid of gallstones. It’s a good sensation, almost like feeling as if blood is going to places that were blocked or something. I also feel this when the acupuncture helps open up pathways. I also notice that about half an hour after the pills, I feel dizzy. I also realize now that it has been 7 days being off all Lyme meds and nothing unusual has happened. I get the minor symptoms, body vibrations, some nausea and the vertigo. If you are concerned about doing everyday stuff, you can, Humaworm doesn’t have you chained to the toilet (as I thought). You can still go shopping, go to school, go to work. As for the poop stuff, I didn’t notice any major thing going on.

HUSBAND: He has never done a real detox ever, he ate rather poorly (I think) for most of his life and is well known for his love of burgers and all things bacon and meat. His die off was pretty severe, which really only consisted of bad headache, and some gassiness, but enough for him to go down to half a dose. Not sure when he will go back up to the right dosage but I say to wait until the headaches clear and then go back up. The problem in his situation is that he has to work and sometimes it is labour intensive.

Bottom line: This Humaworm thing is POTENT.

David Suzuki’s The Nature of Things + lymeSAVERS Bursary Fund


I have 2 bits of important news to share with you.

Lyme featured on David Suzuki’s The Nature of Things.

Click here to view this documentary – currently available in Canada Only.
http://www.cbc.ca/player/Shows/ID/2411526805/


lymeSAVERS Bursary

The second bit of important news is that my friend Kevin over at Lyme Savers has put up the Bursary Application for Lyme. The Foundation awards bursaries to eligible persons ranging between 3 and 60 years of age at the time of application. It is the goal and hope of the lymeSAVERS Foundation that through these bursaries Canadian Lyme patients can receive proper treatment and medications in their fight against Lyme disease.

Be sure to check it out!

There are absolutely no words for the title of this post.


Actually there are 2 other possible titles.

#$%@#$%^&

OR

!@#$#%$%^^^%$%^%$%^%^#$%

But then it would have definitely hit your spam folder. So, after my Friday night which didn’t go as planned, my Saturday, Sunday, Monday, Tuesday, Wednesday, and Thursday, didn’t go as planned either.

As you all know, I got a Spinal Tap/Lumbar Puncture a couple Friday’s ago. This was because I got a sudden headache on top of 3 weeks of unexplained burning sensations in my head. Mind you, I have had weird sensations like tingling and shooting pains, but never burning. My last head MRI and CT Scan was in March 2012 so I had this vision of a tumour growing in there since last year and decided to get it checked out. I was “talked into” getting the spinal because the headache was “sudden”. To rule out an aneurysm or meningitis. Which of course, it did.

When I wrote you last, I was beginning to get a headache, but I didn’t know what type of headache it would manifest into.

Yes. I was one of those that got the spinal headache.

What is a Spinal Tap
They inject a needle into your spine and take out Cerebral Spinal Fluid to rule out stuff like Meningitis and other bad things.

What is a Spinal Tap Headache
According to the Headache Classification Committee of the International Headache Society, headache after a lumbar puncture is defined as “bilateral headaches that develop within 7 days after a lumbar puncture and disappears within 14 days. The headache worsens within 15 min of resuming the upright position, disappears or improves within 30 min of resuming the recumbent position”. This definition helps to avoid confusion with migraine or simple headache after lumbar puncture. SOURCE

What this actually means
That the spinal fluid is leaking from the hole where they inserted the longass needle to take out your spinal fluid. This creates a passage for the spinal fluid to leak out, changing the fluid pressure around the brain and spinal cord. You get an excruciating headache when you are upright, like even sitting. It relieves instantly the minute you lie down on your back. This makes it literally impossible to do anything simple, you know, like eating, showering and walking.

What a Spinal Headache feels like
I read somewhere that only 30% of people get this. Then I read somewhere else that it is 50%. Then somewhere else 70%. There are no words to describe this headache. Kinda like there’s no way to describe The Matrix, you just have to experience it for yourself. But here is my attempt:


A Spinal Headache is one that makes you feel like you got trashed all night, woke up on the street, accidentally got hit by a mac truck, dragged 2 blocks, then some guy from an alley decided it would be fun to come and smash your head with a mallet continuously for 120 hours. In comparison, a migraine would feel like butterflies dancing in the sky.


To sum it up, this is a little drawing I did on my iPad while I was in horizontal position for most of the week.

photo

What they say to do
To relieve symptoms, take caffeine pills, or drink 100 bottles of Mountain Dew, or Coke, or anything that has caffeine in it. This “should” help with the symptoms. Did it help me? NO.

What they can do to actually get rid of the headache
A Blood Patch. They take blood from your arm and inject it back into your spine (not in the spine, but the area outside of it). The blood will then clot and form a “plug” that will plug up the hole. Almost like temporarily sealing a punctured tire. Your body will naturally seal that hole anyway, but this is a temporary reliever. The headache is usually INSTANTLY RELIEVED. Why isn’t this the first line of defence? Because it’s invasive and there small risks like Meningitis, infection, what not.

My concerns
Because I have Lyme, by taking my own blood and putting it back into my spine, will I cause even bigger problems? I asked my LLMD. She said that Lyme is all over our body, so nothing new to the spine. I asked Dr. Marty Ross on his online webinar. His response:

“I don’t know the answer to your question because we have never had any research done for the infection of the spinal cord. Having said that, to be honest, if you already have Lyme in you, it’s probably floated throughout your whole body and blood system and therefore gotten into the brain and your spinal system as well. So the likelihood is that it’s there and isn’t necessarily causing you any lesions on your spinal cord or your brain. I’m not sure if you take your own blood and if you are going to introduce more infection into that area, but again, there is no research done in this area.”

I did more research on Lyme and spinal blood patches, nothing came up really, but I did come across HIV Patients who got the same thing done. They were monitored for about 1.5 years after the blood patches and they seemed to do well after that.

Anyway, here are the events that unfolded. Sit down because it’s long.


Saturday – where I left you from my last post

Sunday – woke up, hmmm feel good! Sat down and ate breakfast. hmmmm not so hot. OMG I have to lie down. Like right now. Husband and Child, I don’t think I can make it to Church with you! Spent the rest of the day lying down. Tried to shower but had to do a countdown before the headache came in.

Monday – woke up, ok good, maybe it’s going away. 15 minutes later. Ok maybe not. OMG, help me! husband is working, child is at school. Thank goodness for moms. Spent the remaining day lying down and trying not to puke from headache. Barely ate, appetite totally gone. Google is not a good friend at this point.

Tuesday – Our 13th Anniversary. Husband has a huge event for work, probably the hugest event of the year. I really wish he was home today.
6:45 AM – Mom, please take me to the ER, I need to get this damned blood patch or I think I will literally die later today.
6:45 AM – Probably the fastest shower I ever had in my life.
7:10 AM– Wolfed down breakfast.
7:15 AM – Saw Child off on school bus.
7:30 AM – Mom dropped me off at the ER.  She was sick herself from a bad cough and didn’t want to be in the hospital and infect everyone.
7:45 AM – Explained to Triage Nurse about spinal tap and spinal headache. Brought me into another room. Head is exploding at this point.
8:15 AM – Another nurse comes in and asks me the same questions.
9:30 AM – Doctor comes in and asks me the same damned questions. UM OK, are you all not reading your clipboards? or are you writing stuff to look busy but not really writing anything at all? Doc assess situation and tells me he will page the Anaesthesiologist (who is the only one that can do the Blood Patch). In the meantime, he will give me a pain killer shot in my bum. “Um these aren’t steroids right?” It’s called Toradol, a non steroidal anti-inflammatory pain killer. I am not convinced.
9:45 AM – Nurse comes and gives me this shot in my bum along with another shot of something else. Again, I am assured these aren’t steroids. I wasn’t feeling very good about this.
9:50 AM – Nurse now draws blood. They need to make sure my blood is good for the blood patch. If you are on blood thinners, a blood patch will not work on you.
10:00 AM – Please go back into the waiting room and wait for our call. It will take an hour to get your blood results.
10:30 AM – Ok. Headache is now killing me, can’t lie down, have to put my head back on upright chairs with 100 sick people around me.
10:35 AM – UM, stomach not feeling too hot. Infact, it’s starting to get upset. Run into the bathroom.
10:45 AM – OMG what’s wrong with me! Bathroom time again!! Must have been those damned shots!!!

At this point, I have never felt so sick and disgusting and wanted to crawl out of my own skin. I had no car to drive home, nor could I drive home, my stupid phone battery was already at 30% by 11:00 AM after being charged all night (thank you iPhone you suck). I called my mom to please come back and sit with me. I really needed some moral support. And the bum shots did nothing for me by the way. All they gave me was an upset stomach.

11:15 AM – Mom comes and sits with me although paranoid about her coughing.
11:45 AM – OK WHAT IS GOING ON
11:50 AM – “Hi Nurse, do you have a bed or something I can lie on, my brain is literally going to fall out.” “Absolutely not dear, we have none.”
12:00 PM – I was nearly at the point of lying on the floor.
12:30 PM – I find the ER doc and ask him what the hell is going on and he says “Oh, yes, I paged the Anaesthesiologist, however he is back to back in surgeries until 5 PM. And there is only one Anaesthesiologist in the hospital. You can come back at 5PM at which time he will be on call. But even then, we can’t guarantee that he will be available. He suggests that now you go and get some caffeine pills from the Pharmacy” CAFFEINE PILLS SMASHEEN PILLS!!!!!!!!!!!!!!
12:31 PM – I am now ready to go find a meat cleaver to chop off my head.

My mom drives us home, I was so exhausted and in so much pain, I passed out in the car. When we got home, I literally walked in and laid on the floor by the door.

12:45 – I call Husband crying and delirious.
12:47 – 4:30 PM
– Passed out on the couch.
4:30 PM – Mom takes Child (who’s now home from school), to his swim lessons.
5:00 PM – I hear the door opening in the midst of sleeping. OMG is that a burglar!? It can’t be Mom and Child, they are still at the pool? I see a figure, a dark figure approaching. OMG, is that our neighbour? or is that Child who grew 25 years? Am I hallucinating?

It was my husband who came home early!!! OMG! Thank the Lord!!! I was literally crying. I have never been so happy to see him in my life.

He came home at my distressed call, despite the huge event he has been working on for 6 months. He assured me he had all his guys ready to take over for him. I was relieved. Besides it was also our 13th anniversary. He asked me how I was doing, and came over with our anniversary gift. I was like “NO!!! NOT NOW! NOT WHEN I FEELING LIKE THIS!!”

6:00 PM – My awesome cousin stops by with some soup for me and I was feeling pretty good now, but 15 minutes in upright position clearly confirmed I was wrong.
7:00 PM – Husband, please take me back to the ER.
7:30 PM – Hi Ho, Hi Ho, it’s back to the ER we go.

photo

8:00 PM – See the Triage Nurse for what seemed to be the 100th time. Explained again.
8:30 PM – Go inside to that other room. Encounter the same ER doc in the hallway who did the original Spinal Tap on me last Friday. “Hi!!! I’m back!”
9:00 PM – ER doc finally comes into the room. “Ok young lady, what happened now!” He knew what was coming. He said by the way I walked in smiling, that I looked fine. My husband piped in “She holds her pain well, she went to 6 cm without uttering a peep during labour”. I threw on the theatrics at this point. I wasn’t leaving the hospital without a blood patch. The ER doc tells me that the Anaesthesiologist will probably not do it. I said “WHY! You told me you would do it last Friday!”. He says, normally people with Spinal headaches can’t walk and are vomiting all over the place. But he pages the Anaesthesiologist again and asks me what pain relievers I want. Tylenol 3 or Percocet. I asked what the difference was. He explained once he had Percocets and when the pain wore off, the Percocets made him dance on a bed. I decided to take the two Tyelonol 3’s.
9:15 PM – OMG headache is gone. Thank you Tylenol 3. But now I had this severed stabbing pain in my stomach from them. UGH!!!!!!!!!! SERIOUSLY???!
9:30 PM – “Ok young lady! we convinced the Anaesthesiologist to do the blood patch!” oh thank the stars.
11:30 PM – Anaesthesiologist enters the room. I wanted to kiss him. He asks me if I was the same girl that was waiting for him in the morning. I said yes, but went home. I explained that I have a 6 year old, I can’t work, I can’t cook I can’t sit up for more than 10 minutes without wanting to puke. He looks sympathetic.
11:45 PM – He gets 2 nurses, and starts to gather all the medical stuff and starts explaining the whole blood patch procedure. I’m like Yes, I know all this already, what do you think I’ve been doing for 4 days lying on my back? There’s something called Google. Infact, I am pretty confident I can do this procedure myself. I mention then about the Lyme. He asks if it’s a blood-borne infection, because there is concern about injecting infectious blood back into your spine. I said I think so? He said that Lyme is usually considered an acute infection, but in my case (1.5 years of treatment) that is is chronic and should be ok. At this point, I didn’t care.
11:55 PM – I am now hunched over, ready to have the long needle inserted again. Then he rushes to my arm and draws blood there. The he rushes back to my spine and injects it there. I could feel pressure, lots of it. It was 20cc’s of blood.
12:00 AM – All done. Lie down for 3 hours on my back. This time, I. DID. NOT. MOVE. A. MUSCLE.
12:05 AM – Husband sleeps in the car outside.
1:30 AM – Nurse comes in to check on me. All good.
3:00 AM – Nurse wakes me up, husband comes and gets me. We go home. Nightmare over.

Wednesday – Feel so much better. Lingering headache but not Spinal headache. Difference? If you lie down and still have a headache, it’s not a Spinal Headache. Just a regular old headache which I now view as a blessing. Was lying down pretty much all day again to make sure the blood patch didn’t dislodge.

Thursday – Oh so much better, still minor headache. Still laying down.

Friday – Took it easy. Was able to work for a little bit and sit at my desk. When I get up, I get about 3 seconds of spinal headache. Then it goes away.

Saturday – Still took it easy. Did some laundry but made sure not to lift anything heavy. Started getting this weird pain in lower back right by bum… when I get up, it really hurts. Maybe this will go away.

After That until Today – Getting better each day. Had an acupuncture session about 1.5 weeks later. I told her what went down and to be mindful of that area and the acupuncture needles. She says “OMG, spinals are very invasive! And normally acupuncture needles don’t even go near that area, so don’t worry”.

Acupuncture Update: She said my head and neck area are releasing very well. I told her about the lower back and bum spasms when I get up from a seated position (probably due to the whole Spinal Tap ordeal). It’s now painful enough to cause me to stop what I am doing and start the labour breathing to get through it after I stand up. Then it passes. She said the reason for the nausea and all that stuff is because everything is located in the head area. This is where all the signals are and my head is very bad, but she is very happy at my progress.


LESSON + TIPS ABOUT SPINAL TAPS AND HEADACHES

  • You don’t need to get a spinal tap to get the headache. Usually this is also for moms who do C-Sections because they go into your spine. This makes sense as every time I went back to the ER, they asked me if I just had a baby.
  • The blood patch isn’t that painful. At least for me it wasn’t. The staff at the hospital were really good and I didn’t have a terrible experience with them. The Anaesthesiologist assured me over and over that they are very good at what they do. And he was right. (BUT, I wish they gave me better instructions about laying flat).
  • If they use smaller gauge needles, you may not get the spinal headache.
  • After you get your spinal tap, make sure you LIE DOWN FOR 24-48 HOURS. Actually, make that 36 hours  – a week to be safe. I am seriously not kidding. I would rather take a week off work then to go through that torture. They neglected to enforce this rule on me. Because I was up in 30 minutes eating, running to my car, and moving furniture. DO NOT, I REPEAT DO NOT DO THIS.
  • Drink lots of fluid, like water and caffeine to replenish the fluid while the hole is healing. This didn’t help me at all, but it may help you.
  • For a visual on the headache, if you have ever watched Mission Impossible 3 when Tom Cruise was trying not to let that bomb explode in his head. That kind of pain. Yes.

This has got to be the absolute WORST experience of my life. It was mentally and physically draining. I would equally compare this to the first time I was sick with Lyme, except with this, I knew what was wrong but the real stress was getting them to perform the blood patch as well as knowing you may be injecting spirochetes back into your system.

Thank you to all my friends and family who stuck with me, listened to me complain, and to God, who I must have talked his ear off that whole week. He is my source of hope and peace and I really wouldn’t have gotten through this week without HIM.

One thing I forgot to mention: They never figured out why I had the burning sensation. UGH!!! I am scheduled for a head MRI in November and then to see a Neurologist as well. I complained to them that they sent me to see a 1 star rated Neurologist and she chuckled and booked me in to see another one instead. YAY.

This Friday night did not go as planned.


Last night, I was contemplating on going to this event. The event was a 90210 theme party for a huge national charity and they secured a headliner to do the show. I was looking forward to “potentially” going (because everything with me is “potential”) and also because 90210 was my favourite show ever. To make a long story short, I didn’t go. Because I went somewhere else.

photoContrary to popular belief, this wasn’t a text to my husband, it was a text to another male friend. The actual text to my husband went something like this.

Me: Hey I am going to the ER.
Husband: Really? That’s awesome. I just met the band, can you bring my black Pumas, they are by the door.
Me: Did you hear what I just said. Do you even care?
Husband: What?

Then my cell phone rings. “I didn’t see your first text! I thought you were coming to the event!”

UGHHH. Husbands.

Ok backtracking, earlier on at about 4:30 pm, I was playing with my son doing this playdoh stuff. I hate playdoh.

Then all of a sudden, out of nowhere, I get this excruciating headache that went from a 0-10 in about 5 seconds. Now under normal circumstances, I would think nothing of it. But the past couple of weeks, I have been experiencing these weird head symptoms. It’s burning, and tingling, like you were sitting in the sun too much and getting a sunburn. Except it’s inside your head and appears in different spots, ALL DAY.

I asked my Acupuncturist on Thursday if she sees this with her patients. She said no and that it doesn’t hurt to get it checked out. So anyway, after this headache comes on, I start panicking and I do something that makes the situation worse. I go to Google. Convinced that I am now dying of some type of brain tumor, I text my cousin to help me babysit. She already has plans that night. I then text my bff who thankfully was able to come.

I get to the ER with my phone and charger in hand. This will be a long night. I see the biatch triage nurse and the conversation goes like this.

7:00 PM

BTN (Biatch Triage Nurse): What are you here for.
Me: I have been getting these weird head symptoms like burning, shooting pain. It’s not localized, it’s everywhere and goes to my face. Then today, I experienced a massive headache that spontaneously came out of nowhere.
BTN: How long has this been going on.
Me: About 2 weeks.
BTN: This is an EMERGENCY ROOM. You should have went to see your doctor, who would have went through the right protocol follow ups.

OK WHAT? And you don’t consider burning and tingling pain in your head with a sudden onset of a massive headache to be an emergency?

7:30 – The doctor comes in. He jumps into the chair like a little 5 year old. It made me smile. He was the same ER doc that diagnosed my son with a pnemonia 2 years ago. I remembered that I liked him.

Doc: What’s up!?
Me: Hi, I have been having weird head symptoms like burning and tingling and I want to make sure that I am not dying of a brain tumor.
Doc: Ok, we will get a CT Scan and a Lumbar Puncture (Spinal Tap)!
Me: Awesome! But do I really need a Spinal Tap? Is that like an Epidural? I had one when I was pregnant and I remember thinking it wasn’t too hot.
Doc: Well, let’s take a look at the CT and we can go from there.

7:45 – CT Scan
8:30 – Doc comes back and tells me that the CT came out clear. I do not have a brain tumor. I can pass GO. I can collect my $200. However the CT scan is only 96% positive. There is that other 4% which the Lumbar Puncture will cover. An MRI would have done both jobs, however their MRI machine wasn’t available and the Lumbar Puncture was the “cheap and old” way to do it. GREAT!
8:35 – The signal is very crappy at the hospital and I am trying frantically to google Lumbar Puncture. No success.

photo 1Why do they always paint the walls a vomit yellow?

9:30 – Lumbar Puncture time. A male nurse comes and tells me to change. Everything off except the bottoms. The doc comes back in and tells me what he is going to do. He explains to me that he has to rule out an aneurysm. Now I know that ain’t no joke. A very close friend of ours had died of an aneurysm when he was 28. The doc continues to explain that I needed this done because I said the headache was sudden and that is their protocol. There could have been a ruptured blood vessel, however he doubts it because we are sitting there cracking jokes. BUT there is a chance that if it is ruptured, that was a small rupture and the bigger one might come later.

He puts a wheeling tray in front of me with a pillow on top of it so I can use it to hunch my back and bend over. The nurse prepares all the stuff and the doc inspects my spine. “Wow, you have a nice physique! This is going to be easy!” I was flattered.

He located the spot right, put the numbing needle in, I was still bracing myself for the big needle, but by then it was over. “That was the fastest Spinal I’ve ever done! I should win a medal!” he screamed.

So then I’m instructed to lie down on my back until the results come. Here is where it gets interesting. I learn that the side effects of a Lumbar Puncture is a huge massive headache. WONDERFUL NEWS! Now, if the headache doesn’t resolve on it’s own, as in if no Tylenol, Advil, or whatever can touch it, then to come back in 2 days where they will do a blood patch. This means that they will take blood from your arm and re-insert it back into your spine. EVEN MORE WONDERFUL!

At 11:30pm, I finally get the results. All the 4 vials of my CSF were good. I can go home. In the meantime, he has me scheduled for an outpatient MRI because he likes to “cover all his bases” and a referral to a Neurologist. Did I tell you that I love this doc?

At this point, I was feeling pretty good, until I had to walk to my car in the pitch black. I was scared I was going to be mugged, because I parked really far (to avoid paying the parking fees) and getting to my car involved walking beside a forest on a street with no streetlights in the middle of a not so hot town. I called my friend while running to my car and by the time I got home, my head was splitting like someone had cracked it. I started feeling nauseous.

photo 2

So I get home and I ask my friend to take a look at my back. I asked if they had put anything on there. She’s like “Um, there’s a huge patch on it, what do you think!?” I was like “Really? I can’t feel a damn thing.” Then I went to bed in exhasution.

This morning, I was feeling good, had some breakfast, then started moving furniture. Yes. don’t ask. That’s what I do. The headache came on in a split second and I had to lie back down. I get back on google and before I was convinced I was dying again, I threw my laptop across the room. I layed in horizontal position nearly all day while my husband and 6 year old waited on me hand and foot.

Later on, bored, I went on google again and decided to go check out this Neurologist.

photo

Why am I so lucky?

Here’s what I think is truly happening to me. I think the Acupuncture treatments are opening up something in my head. The Acupuncturist told me on Thursday that my GI is ok, but my head is severely congested and it will be very challenging to balance it all out.

By the way, I mentioned NOTHING of Lyme while in the ER.

After you read this post, you will drive yourself to the nut house.


Sept 11 was my 4th LLMD appointment. I see her every 6 months. She is a 5.5 hour drive from me. We left at 8:30 pm because my husband had to work. At about 2:00 am when we crossed the border into the USA, this happened.

photo 1

No, that is not the eye of Terminator, that is a cop. He said we were doing a 65 in a 35 zone. I am not sure what this means because I speak in kilometres. Moreover, it was 2 am, pitch black, country road, no signs anywhere. We played the foreigners game and he let us go.

We arrive at the hotel at 2:30 am. 6 year old loves staying at hotels and woke us up at 6:30 am because he was all excited. YAY.

I twiddled my thumbs until 10:15 am because my appointment was at 10:30 am. I later found out that my appointment was actually 10:00. I wasn’t aware the new policy that you have a PRE-appointment with a nurse. YAY.

It’s a 2 minute drive from the hotel to my doctors office, so that was the only thing easy about this day. I can sum up the appointment into 2 sentences.

I basically told her that I need something that will kick me in the pants for the last and final time and drive these mother !@#$%$^^ out of my body so that I can live in peace and lead a normal life. She is having me stay on the same treatment (Alinia, Artemesinin, Bab2)  but will adding 2 other antibiotics into the mix. Namely Malarone (never taken it) and Zithromax (which I was on last year).

Here is where it gets fun.

First of all, I will have to go and get Alinia AGAIN. I simply have no words. Here are my Alinia adventures here, here, here, and here.

Now my Malarone adventure beings here.

I leave her office with the 3 prescriptions in hand. Alinia, Zithromax, and Malarone. The receptionist gave me some discount cards which can be used at pharmacies.

Mission: Acquire the 140 pills of Malarone.

DRIVE TO TARGET
They don’t have Alinia, they don’t have Zithromax, but they do have Malarone (only 49 pills).

DRIVE BACK TO HOTEL TO PICK UP HUSBAND AND CHILD AND CHECK OUT

DRIVE TO WALGREENS
They have Alinia, they have Zithromax, they have Malarone. YAY
Pharmacist: Maam, your total for all these will be $5,490
Me: UM, Hang on, let me clean the wax out of my ears. COME AGAIN????
It turns out the Alinia was $4000.
Me: NO THANK YOU SIR! I will go back to my computer and buy it online and go through customs and curse all day. BUT I will take the Malarone and Zithromax for the cheap price of $900.
Pharmacist:  Great! Let me check if we have them in stock
Me: UGHHH
Pharmacist: Oh, sorry we only have 72 pills of Malarone.
Me: Target has 49. Can you guys somehow make it so that I can get this?
Pharmacist: Yes, here’s the RX number, go and call Target and give them this and we will transfer them the files. Come back in 25 minutes and pick up your meds.
Me: Great. Thanks

I call Target. No answer. I get back in the car with Husband and Child and say to hell with it, we are driving back to Target. But wait! Lets check out Kmart and Walmart first.

DRIVE TO KMART
Me: Hi how much Malarone do you have in stock?
Pharmacist: 8 pills and we don’t have the generic.
Me: Thank you. Bye

DRIVE TO WALMART
Me: Hi how much Malarone do you have in stock?
Rep: Honey you are in the wrong line, you have to go over there.
Me: OMG SOMEONE SHOOT ME PLEASE?
Pharmacist: we have 15 pills
Me: Thank you. Bye

DRIVE BACK TO TARGET
Me: Hi, I was just here and went to Walgreens. They have 72. Can I get the other 49 from you?
Pharmacist: No sorry we don’t that.
Me: Walgreens says you can. Here’s the RX number
Pharmacist: Oh ok, then. Come back by 1:30, because we close for lunch and won’t open until 2:00 PM.
I look at my watch. It’s 1:12.

AT THIS POINT, I AM READY TO COMMIT MURDER.
If my math is correct, my presciption for Malarone is 140. Target has 49, Walgreens has 72 which only equals 121. LIGHTBULB! Walmart has 15!

DRIVE BACK TO WALMART
ME: Hi again. (with a super fake smile). Can I please get the 15 Malarone pills you have? Here is the RX number. Thank you and goodbye.

DRIVE BACK TO WALGREENS
Made it! Picked up the 72 pills
Husband: OMG YOU FINALLY HAVE SOMETHING IN YOUR HAND!
Child: MOMMY! WE HAVE BEEN DRIVING IN CIRCLES FOR 2 HOURS, IM HUNGRY WAAAAAA!

DRIVE BACK TO TARGET AT 1:29 pm
Made it! Picked up the 49 pills

DRIVE BACK TO WALMART
Made it! Picked up the 15 pills

Still short 4 pills. Do you think I care? HELL NO!!!!!!! And here’s the cost of this week’s episode of the Amazing Race.

WALGREENS
Zithromax: $612.43 (with discount)$ 497.37 = $3.55 / pill
Malarone: $444.69 (with discount) $238.57 = $3.31 / pill

WALMART
Malarone: $87.08 (NO discount) = $5.80 / pill

TARGET
Malarone: $359.27 (NO discount) = $7.33 / pill

Total Spent on Doc and Meds: 1618.59
Hotel: $80
Food: $50
Gas: $120
Sanity: Priceless

Now, can someone please send me a medal?

Now look what I gone and did.


Something is screwy with WordPress. I originally wrote this 6 days ago, but wondered why it was like crickets over here… I usually get some type of response or likes and so I went back to login and it says it’s in draft mode? UGH. So here it is.

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That last herx I had wasn’t pretty, it lasted for about 10 days and left me pretty much feeling like pure crud. So to celebrate the awesomeness of it all, I went and purchased this.

humaworm

I did my research. I read alot on curezone.com, fished through alot of testimonials, emailed back and forth with the Humaworm client rep for about a week. And finally decided Hey, Why Not. What’s the worst that could happen? I purchased 2 sets, one for my hubs and one for me so we can hold hands and go through this together while we ride off into the sunset.

Many say that we de-worm our pets, but never ourselves. And to that I would like to say, “Hmmm….yes, that’s true, but we also don’t frolick outside 18/7, bathe once a month and lick our own butts.” However, they do have a point.

Now my only concern with this Humaworm thing is that you can’t take Probiotics. I guess because it cancels each other out. I will need to speak to my doc about this because I will probably go on a one month med hiatus.

I found a rather humorous blog of a guy who did the Humaworm parasite cleanse and wrote about each day. READ IT HERE. Nothing to be scared about. I am confident that whatever this Humaworm does to me, it will not come near to the trip I took to Hades last year flying first class.

NOW

So as far as now, I am still alive and feeling pretty bloody fantastic. I have been relatively symptoms free for about 2 weeks. However am battling some pretty bad headaches. Now I remember that my good old LLMD said to me once “You will feel pretty gross and stuff and then all of a sudden, you will just feel better.” Now the emphasis on the “better” was something like an “a-ha moment“, something like the picture below. I am referring to that split second when the music goes “ahhhh..” kind of angelic like. I am hoping this feeling will stay.

simpsons

JAPANESE ACUPUNCTURE

So my mom told me to go with her to see this Japanese Acupuncturist. My mom had been seeing her for about 3 months and she cured her of numbness and tingling in her arm that was bothering her for months. So I went last week and told this Japanese lady of my story and in her cute little Japanese accent, she described to me that Lyme is just a label that Westerners use. In fact, most diagnosis’s are labels.

What acupuncture does is balance out your body so that it repairs your immune system so that it can help you fight whatever is messing with you. She said my digestive system is very weak. The 1 hour session consisted of much prodding on my abdomen and pushing on alot of organs. I have done acupuncture before but it was never like this! I am usually used to the acupuncturist sticking 4 needles in me and then leaving me to die in the room for 30 minutes. Kidding. No seriously, she was basically in the room with me for that entire hour going around the table that I was lying on. 30 minutes I was lying on my back (you had to disrobe and lie under sheets) and she would be inserting needles, taking them out, applying acupressure in a certain spot etc. Then the other 30 minutes was lying on my stomach. And the whole rigmarole was then focussed on my back. At one point, I smelled incense and I think she was burning the needles. I did a little more research and found out it is called Moxibustion.

The whole experience was very calming and I will be seeing her again in 2 days and then probably once a month. However, later that day I had a headache the size of Texas. Anyway, I am sure this was a huge toxin release, but I am very excited to continue this treatment. Read more on the difference between Japanese and traditional Chinese Acupuncture here.

Update: So I went and saw her again, and told her about my headaches and electrical shocks in my head. She was like Hmmmm… She went about and did her treatment and then at the end said my head was very “puffy” and “soft”. It is supposed to be hard and she made me feel the base of her skull. My head being soft meant it was congested. I remember the last time, I felt this kind of release, like water pouring over my head, like blood was being let in or something and some type of pathway was opened up….

UPCOMING POSTS:

  • LLMD Visit is in 2 days
  • My next series of posts will probably be about the Humaworm (Starting Sept 16, 2013). I will most likely do a 30 day diary.

OMG, I’m now 18 months into treatment and feeling worse.


Sorry for the title. I vowed in my entire existence that these words would never come out of my mouth let alone my keyboard. I have become my own worst enemy. I am a hypocrite. I am sorry.

Truth is, the past few weeks have kind of put me through the ringer. Yes, I know this is something that you don’t want to hear, especially the newbies. But don’t fret, this soon shall pass.

Most of my symptoms came after eating at Boston Pizza. I have made a promise to myself I would never eat there again. Reason being the last 2 times I ate there, 1) I found a dead fly in my spaghetti 2) I had the worst heart burn and gallbladder pain for 3 days. Rivaled the same pain as I did BEFORE I removed my gallbladder. Go figure.

Then Aunt Flo came to say hi 3 days after and then all hell broke loose. I thought I would recover after she left but nope. It is lingering! Last night wasn’t too hot. So what is it for me? I feel sick. Like I ate something rotten. My head feels spinny like I got drugged and forced to drink a bottle of vodka. My appetite is kind of gone. I crashed a bit hard last night and this morning couldn’t get out of bed until 9:30 am. My poor 6 year old wouldn’t have made it to camp if my husband wasn’t home to drive him.

So anyhow, this is where I am at. I am toying with the idea of purchasing this: HUMAWORM. They have a pretty informational website. I have read very good reviews, complete with pictures of toilet adventures of people digging through poop for evidence. If you have tried this, please comment, would love to hear your results, but don’t necessarily want to see your poop.

I see my lovely doc in a month and can’t wait to see what she has for me next. I’m being sarcastic. I seriously thought that I would be done and over this crap by end of this year. I am not too sure given the festivities that happened the past couple of weeks.

It’s good to have friends out there who know what you are going through. Kevin, (we see the same doc), gently pushed me to send an email to her. Here it is.

————————————-

“Hope all is well! I have a some concerns. I am on the Alinia/Artemisinin treatment and on full doses of everything. I couldn’t handle the vegan diet, so am eating meat. I have been doing excellent the past several months and my highest peak was 95%. But in the past 3 weeks or so, I seem to have regressed I would say back down to 75-80%, now having my first lyme symptoms which is freaking me a bit out. The biggies are nausea, loss of appetite, dizziness and vertigo and some minor fatigue. But enough for me sometimes to crash hard. These have been re-occuring symptoms but again the past few weeks/days have gotten severe. What do you make of this? What should I do? I see you in Sept 11. Should I wait until then to assess?

Response:

“This may be herx. Make sure to do detox/homeopathic detox/herx treatment. If you need to lower the doses of the supplements. Let me know if it still is a problem.”

————————————-

My question is, how can your herx be WORSE 6 months into a treatment regimen? Isn’t it supposed to get better? Just sayin’.

Today I also did the usual monthly blood work. Blah. My levels have been pretty steady the past few months. Ok so that’s it. Nothing else. I am hoping my next post will not be talking about poop. But if I decide to purchase the Humaworm, it may very well be. Stay tuned.

It’s the most wonderful time of the year.


So, I ran out of my Alinia and had to go get a refill now across the Niagara border. YAWN. BORING. We decided to make it an adventure and stay the night. Little 6 year old buddy doesn’t recollect ever seeing the falls even though we brought him there 2 years ago. Kids and their memories huh? GEEZ. You would think they would remember seeing something significant like 6 million cubic feet of water falling ever minute.

The truth shall set you free.

We felt like we were in the twilight zone. We literally breezed through the border crossing into the US. No lineups.

Border Patrol Guy: What is the nature of your business.
Me: Picking up medication.
Border Patrol Guy: How long will you be in the United States.
Me: About 10 minutes.
Border Patrol Guy What is this medication for.
Me: Lyme Disease.
Border Patrol Guy: (Pauses) I don’t even know what that is. But here you go (hands us back passports)
Me: Great. Thanks. (Douchebag)

10 minutes later, we come back but are now stuck in 25 minute border traffic.

Border Patrol Gal: What is the nature of your business.
Me: Picking up medication.
Border Patrol Gal: How long have you be in the United States.
Me: About 10 minutes.
Border Patrol Gal What is this medication for.
Me: Lyme Disease.
Border Patrol Gal: Why aren’t you allowed to get it in Canada?
Me: I don’t know, ask the Government
Border Patrol Gal: How much was it?
Me: About $50
Border Patrol Gal: Can I see your paper work?
Me: Yes, here you go. (prescription from LLMD, invoice for $50 for the meds, delivery notice to the mailbox)
Border Patrol Gal: Thank you, you are free to go. Have a nice day.
Me: Thanks!

So lesson learned. Don’t lie, don’t act skittish, don’t stress, just tell the truth. Have your paper work. Then all is golden.

There will no photos of border crossing, or stupid alinia pill shots, or traffic. Just some amazing shots I took of our little one day vacation over by the Falls. Of the 33 years that I have been living in Toronto, this was the first time that we did “Journey Behind the Falls“, a self guided tour where you are literally right beside the falls. When I say literally, I mean like you go down an elevator, put on a plastic rain coat and get soaked from just standing.

photo(5)

photo

photo(2)

photo(3)

photo(4)

This is a picture of the hallway at the Sheraton. I walked this by myself at 12:00 am and literally freaked myself out.

photo(1)

In other news, this appeared in our local paper. Kevin, our local celebrity from “Lyme Savers” was also mentioned. Way to go Kevin!

04

Last on my list of news, I downloaded a totally useless iPad game called “PLAGUE” INC.” for 99 cents. It allows you to create a disease and infect people all over the world. The goal is to see how fast you can make it go global. I named the disease “EMYL”, which is LYME backwards. It’s such a dumb mindless game and I really could have spent that 99 cents elsewhere like perhaps throwing it in the gutter, but I really paid for it so I can take these nice screenshots for you. See what I do for you?

Now I’m not totally sure why my iPad looks yellow here, because it’s actually white. But this game is stupid and I have already deleted it.

01 02

03

Update my myself

I am not sure what to make of myself. For about a month or so, I have been operating on a low steady herx of about a 1 on the scale. I am not sure if the A-Bart is doing its job, or if I have just plateaued. I feel like I need that extra push to get me through that golden gate of 100%. It feels like I am near though. I have been semi symptom free now for maybe several days, but little symptoms come and go. I see the doctor beginning of September so we shall see what the future holds.

This stuff is kinda nasty.


a-bart

Hmmm. What to write. What to write.

Well, I started A-Bart 3 days ago. It tastes pretty gross. Apparently it’s very potent and even one drop of it can send you into some fit of despair. As says my doc. She advised me to start one drop in 4 TBSP of water and work my way up to 5 drops 2x a day. Or even start at half a drop. Hmm. If you can tell me how to do half a drop out of an eyedropper, please let me know.

I have been progressively getting better however the last 2 weeks, I have been feeling a bit wierdo. Like symptoms from way back are popping up. It’s almost like things are happening in reverse. I read somewhere that as you get better, the first symptoms that appeared will be the last symptoms to go. Does this make sense? So for me here’s my latest annoyances.

  • It feels like I am regurgitating food. Like there is pieces of food stuck in my throat. I know. Gross right? This was one of my very first symptoms that prompted me to see a GI doc and drink this nasty chalky liquid stuff while teeter tottering on a table. And they came to the conclusion that I had Acid Reflux.
  • This trembling that cannot be seen by anyone but me. I asked my husband if he saw my head shaking and he’s like “huh?”. “Oh you mean like old people?”. I said yes. So I tried to sit very still for 60 seconds while he watched my head. He couldn’t see it.
  • Sometimes when I’m at a height of a flare, I feel really nauseous. Like even the sound of my 6 old running up the stairs will make the nauseousness worse. I tried to explain it to my husband and God bless his soul, but he was as confused as a homeless man on house arrest (I couldn’t even come up with that joke, I had to google it). Ok seriously, does that make sense? I said it’s like when a person has a migraine and even a pin dropping would make their migraine worse. Like over-sensitivity to lights. But instead over-sensitivity of sound that makes you wanna barf. Yes? No? OK. I give up.

Here are 2 video’s of Kevin from Lymesavers.ca when he and Dr. Murakami appeared on a local TV Show. I met him at a coffee shop a couple of weeks ago and we spent an hour discussing the sordidness of Lyme. I swear that my story is EXACTLY the same as his. If you put my body on that couch talking to that woman (who BTW needs to find a new profession), I would have said the exact same thing. WORD FOR WORD.

ks

dr.m

Last but not least, this is a bit of old news, but my secret guilty pleasure is watching The Real Housewives of Beverly Hills. One of the housewives on there who is married to the musician David Foster recently found out she had Lyme. She realized that while filming the show, things were not right and finally at the season finale reunion (you know with all the shouting back and forth), she knew that when she couldn’t defend herself properly with all the other women, that something was very wrong. Lyme had infected her brain resulting in Neuroborreliosis. Anyway, here’s her story. And I hope she can bring Lyme to light with her celebrity.

Lyme Awareness Poster for you to Share


What I really should have been doing was work, but my brain was telling me to design this poster. I was thinking more like an infographic, however I wasn’t in the mood to draw stick figures of doctors poking and prodding while scratching their heads, so instead, I opted to use just words.

Hope you enjoy and please feel free to share with everybody and anybody who will listen.

icon_pdf If you want a high res PDF of this file to print and stick over all the trees in your neighbourhood, click here. The dimensions are 8.5 x 17.

lymedout

Thanks to Paula over at The Lyme Maze for helping me proof read this with her sharp eye capabilities.

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