Weekly Update

After changing the dressing twice a week for weeks – using Bactroban under the dressing for the last 3 or 4 dressing changes – my arm is really starting to look better. I’m hoping that by Friday, we can restart trying to use the Grip-Lok so that I feel more comfortable at night sleeping.  I’m just terrified I’m going to rip out my PICC line in my sleep so I wake up more often than normal.

This is “week 4” of my treatment plan.  This is heavy detox week.  Although it has the potential to make me feel better, it also has the potential to make me feel worse and because I didn’t “take care” of my body yesterday by attending a work training – today has been pretty bad.  I’m overtly exhausted.  I woke up with a sore throat, cough, stuffy and runny nose – and I was sneezing.  I “catch” things very quickly.  If I’m going to catch something, generally it is within the first 24 hours of being exposed.  Sometimes it’s even faster than that.  Then if I don’t realize that I’m coming down with a little something, it turns into a big something.   To prepare my body, I took my “magical” Bio Chlor Dox drops before I even went into the training.  I hoped that would be enough to keep my body from turning against me.

So when I woke up this morning with those symptoms including a low grade temp, I recognized it immediately.  I went to my handy dandy drops and typically I can take 5 drops in the morning and 5 drops in the evening at onset of symptoms and be good, but after my normal 5 drops dose I still felt pretty horrible.  So two hours later I took 5 more drops.  Now the thing is I *can* take 10 drops 3 times daily, but because the drops can give a herx reaction – I chose a lower dose.  It’s easier for my body and still has somewhat the same effect.  I’ll probably take 5 more drops at lunch and then 5 drops at dinner and 5 drops at bed.  The most I’ve taken in one day of these drops in ages.  But I can tell if I don’t nip this in the bud  at the start that I will get pneumonia, bronchitis, ear infections, sinus infection or a combination of the above.

My body aches – it’s not the “flu” aches – but a “herx/detox” ache.   I’m just ready to scream in many ways because a day of “normal” caused me to have major problems today (and likely the rest of the week).  I was hoping that I’d realize how much progress I’d made by attending the training, but alas instead I learned that I’m still not ready and will likely be saying, “I’m sorry I can’t” for a while to come.

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Rough 24 hours

* This post may be too gross for some readers.  It involves vomit.  I will put *** right before the “vomit” paragraph if anyone wants to skip over it.

This road is anything but simple.  When I began IV antibiotics, I knew I would get sick.  I knew I would get a lot sicker and tried to prepare myself for the herx reaction.  Each IV that went into my body made me react harder.  What does that mean?  The first IV I did – it gave me extra twitches and overall I didn’t feel well – but if I wanted to I could have been on the computer, watched tv or whatever I wanted.  The first week of treatment – through the first 30 minutes, I was pretty much able to do whatever I wanted – I even cooked some lunch during the first 30 minutes of treatment.  Then I had to rest on the couch and was able to watch TV.

Fast forward to this week – I began on Sunday with one IV (Rocephin) and I started IV Cipro on Monday.  IV Cipro is done about every 12  hours and the IV Rocephin is done once per day.  By my third IV on Monday, I was pretty out of it.  I didn’t get on the computer at all during this IV and it was tough to even watch tv.  Tuesday – within the first 10 minutes on each IV I was under the covers tremoring.  Yesterday morning, I woke up feeling awful.   I didn’t even want to attach to an IV, but I did it anyway.  I had a tough tough go of it.  I began my Rocephin at 1:15 – and 1/2 way through I felt so faint that I thought I was going to pass out.  It was difficult to walk even to the bathroom and my strength was so weak that it was difficult to pull up my pants.  So at that point I called my husband and asked if he could come home from work to work at home – and slowed down my drip rate.  I was hoping that once I deattached that I would begin to feel better, but it didn’t really happen.  I was “burning up” – and had the shakes – and was extremely light headed and had this terrible taste in my mouth.  It was pure awful.  I fell asleep at 6:15 and slept soundly for 3 hours.  I missed my 7pm IV Cipro, but thought it might be best to skip it anyway and hoped I’d feel better in the morning.  Well, I still didn’t feel great and at this point my IV had been disconnected for some time.  I shot off a quick email to my nurse and went back to bed.

*** if grossness bothers you, you may want to skip this next part. ***

As I rested, I began to drool.  I couldn’t control the drooling.  I couldn’t swallow the drool – so I just wiped it off with a hand towel.  I knew there was nothing better I could do.  As the time ticked away, I began to feel worse and worse.  I realized I had to go to the bathroom so I gently got up and made my way to the toilet.  As soon as I sat, I realized that it was going to be coming out of both ends.  I don’t know how long this went on, but it seemed like an eternity.  It got everywhere including my feet.  I can’t stand having wet feet – so feet with vomit on it – OH MY- I was so disgusted by the feeling and I was so sick I could only wipe my feet off on the pajama bottoms I took off.  Fortunately, I didn’t see it – or just the sight and smell would have made me regurgitate some more.

**** the grossness has ended.

I crawled back to bed.  I was too weak to walk.  I took my temp and it was 99.5.  My normal temp is in the 97 range.  I had been keeping a check on it and it had been staying in the 98 range which is fine – but the 99.5 range makes me feel so sick even if I’m not going through a herxheimer reaction.  I rested awake for a while until I finally dozed off.  I woke up this morning hoping I’d feel a lot better, but my throat hurt (from the gross episode) and I was still very light headed.  So I decided to skip the 7am IV dose because I was going to the doctor for a dressing change anyway.  I wanted to let them know what happened.  By the time I got to my Lyme doctor’s office, I was feeling so weak.  After my dressing change – the arm looks better, but still not healed yet – I took them up on the offer to have a lactated ringer in the office instead of waiting until I got home.  I hooked myself up and I knew I was dehydrated because of the speed of the drip.  Wide open when I’m not dehydrated, it takes about 2 hours for the bag to go in.  At his office, it took a little over an hour.  Half way through the Lactated Ringer, I was feeling much better.  They took my blood pressure and it was lower than it normally is – so my best guess is that I was dehydrated & a little low on pressure – and that caused the severe light headedness.

I am feeling much better now.  My temp got up to 100, but now it’s down to 98.7.  That’s much more manageable feeling.   It’s time for my next IV dose.  I am terrified, but I have a few things in my back pocket to hopefully reduce the herx reaction this go around.

This is a song I listen to when I’m feeling rough and need a little pick-me-up.

Week 2 so far

This is what I call the tough IV week.  Last week was more tough oral antibiotics, but this week is tougher with the IV.  I began IV Cipro this morning.  It kicked my butt.  I had major twitching episodes.  It also caused some serious nausea.  Fortunately I took some precautionary medicines before I went in for my first dose.  I now know I need 2 tabs of Zofran before the Cipro infusion.  As I sat in the green chair resting as comfortable as you can in a chair, I just tried to imagine I was somewhere else doing anything else.  It didn’t help much.

My picc line arm looked a bit better.  It was still irritated, but the blistery bumps weren’t distended.  It was only a little bit oozy.  We did another dressing with sterile gauze under it.  I’ll go back on Thursday and hopeful they’ll be even more dried up.

 

Week one of IV Antibiotics

So finally I began something that I’ve been preparing for mentally for the last two years – really I’ve been prepping for it mentally for almost 7 years.  It was my first week of IV Rocephin.  On Monday morning, I spent it at my doctor’s office.  You see the first dose needs to be administered so that someone is there just in case something happens.  Fortunately, nothing happened.  Although, I noticed within 5 minutes that my legs were twitching.  That’s been my top symptom increase this week.  The twitching.  Sometimes it’s my leg, sometimes it’s my arm and sometimes even my butt cheek twitches.  I can go for hours and not have a single twitch and then my body goes into twitch mode. I’m not talking about Twitch from So You Think You Can Dance either.

Other symptoms that have been my top problems this week –

 

  • Brain Fog.  On Monday, I had unbelievable brain fog.  It was as if my brain was in slow motion.  My husband would make a statement and it seemed l ike forever before I could get out the words, “Can you say that again?”  I didn’t understand what he was saying – and it was difficult for me to get out a sentence.  It was extremely frustrating.  Everything seemed to be going 100MPH and I was tooting along at 1mph.
  • Headaches.  I’ve had a headache almost every day, but on Tuesday it was extremely bad.   However, I discovered the joy that is Peppermint Oil a few weeks ago.  So on Tuesday, I smelled like peppermint candy.  It helped quite a bit.
  • Neck pain – On Thursday & Friday, it hurt to move my neck in any direction.  I haven’t had a lymphatic massage since right before my picc line was inserted – and I think my neck can tell it.  It’s really quite painful.
  • Joint Pain – All of my joints have seen an increase in pain, but the three things that hurt the worst – were my finger, knee & ankle joints.
  • Numb feet & legs – I haven’t had “numb” legs in a while.  It’s been so long that I can’t remember when the last time I had numbness as a symptom that was noticeable over other symptoms.  They used to be so numb that I couldn’t feel the vibrations on a baby bouncy seat with my feet.  I’m not sure if they’re that numb yet, but it was a surprise when this symptom reared its ugly head this week.
  • Feeling weak & tired – my whole body has just felt exhausted – not “tired” like sleepy – but heavy.

 

I’ve been on a lot of oral medications this week, including biofilm busters.   The further in the week – the higher the symptom ranking.  I have other symptoms, but those are the ones that bothered me the most.  I also had nausea & vomiting, but those really are related to the medicines directly.  I’ve been blessed with an anti-nausea medicine and it’s helped in some regards.  It’s not been a complete miracle worker, but at least I’m not walking around thinking I’m going to vomit every second of the day.  In addition, I’ve had bad diarrhea.   It’s all medication related.  If you were on this many antibiotics, you’d have it too.

I start IV Cipro on Monday.  I have a feeling that my symptoms are going to take a second round of increases.  Who knows what will rear its ugly head?

 

January 2014 Follow Up

I was supposed to have my follow up today (a snow day here in NC btw – it snowed last night and the ground is blanketed with whiteness this morning).  However, last Wednesday they called and asked if I could come in on Monday instead.   They had a cancellation and knew that I prefer to come to follow ups earlier rather than later.  I took them up on their offer (and thank goodness I did because my hubby was able to go with me to this very important appointment).

Typically I am at the office for about 2 to 2 and 1/2 hours, but on this particular day – I was there 3 and 1/2 hours and then went to the pharmacy to put in my prescriptions.  I won’t give specifics on the oral medications that I’ll be on, but after my follow up – my doctor worked on my treatment plan while I was still in the office with his staff.  He came out and announced that I would begin treatment on Monday – (my birthday!!!).  I will be on 2 IV antibiotics (Rocephin & Cipro) plus some other oral antibiotics.  We’re concerned about Lyme Disease, but even more concerned for Bartonella & Babesia – and one of hte staff is concerned about Mycoplasma so I will be doing an herbal remedy specifically for Mycoplasma.  For those that don’t know – Mycoplasma species have been identified in ticks.  These are smaller than bacteria – and invade human cells & disrupt the immune system.  Some symptoms include fatigue, musculoskeletal symptoms and cognitive problems.  All of these symptoms I have in spades.  It can also be treated with antibiotics, so between the herbal & antibiotic therapy, I should be sweeping these little guys away!

 

Each week of treatment will vary just slightly, but the first two weeks of treatment are going to kick my back side.  I joke that it’s a slap, backslap, gut punch, repeat.  Am I worried?  You betcha! But, it’s only because I always worry when I start new medications and there are a lot of new medications to start on Monday.

What is the plan?  Basically –

  • Kill the bugs
  • Dissolve the Biofilm
  • Detox the body of dead bugs

In addition, I have several deficiency’s that we’re going to try to take care of.  Some are ongoing issues such as Vitamin D and others are newly popped up deficiency’s – Once I get my head wrapped around it all, I might post a better idea of what I’ll be doing.

To be honest, this has been a long time coming.  I’ve tired a lot of things since March of 2007  and now it’s time to pull out the big guns from one of the most well known Lyme Physician in the US.   I’m so blessed that my Lyme Physician keeps learning new things every time I see him so that he always has something interesting to tell me.   Right now, there is not one person in his office that I’m not fond of – (one person I’m leary of for my particular case, but I do like her a lot!)  They always take such great care of me.  I’ll see them twice next week and twice the week after, then it should go back down to once per week while I’m on the PICC line.

 

 

 

 

 

 

 

 

 

IVs at home

There are two wonderful parts of having a picc line.

  • No needle sticks.
  • IVs at home.

I’ve decided that my first PICC line was a dud.  The first go around I had nothing but problems.  It took me well over  a week to get any sleep. I never felt comfortable doing anything with the PICC line arm.  Simply getting dressed was a chore.  This time was so much different. I’ve slept pretty well all week.  The first night I slept 2 hours straight.  I woke up for a few minutes to adjust my body, then fell back to sleep for another couple of hours.  So on and so forth for the rest of the night.  The second night was much of the same.  However, the third night I slept for 5 straight hours.  I woke up in pain and needed to get some pain reliever.  However when I finally fell back to sleep, I slept another solid 5 hours.  I even had some dreams.  Thursday night I slept pretty much straight through the night.  I am even able to adjust when I do wake up to sleep on my PICC line side.  Last time I never could do that.   I even forgot last night when getting undressed that I had it in and lifted my arm up too high – Ooops. That was painful.

On Wednesday, I went in for an IV and teaching at the doctor’s office and also to pick up my first IV bag for home.  It was a simple Lactated Ringer.   So on Thursday evening, I had my first IV at home since 2009.  It took a good minute to remember all of the instructions of how to prime the line, but we did and got attached easily.  It’s going to take me a while to get the “new” drip rate dial.  The last time, I had a dial with numbers.  It was very easy to adjust the drip rate so it wasn’t too fast or too slow.  This one just has a knob – up for faster and down for slower.  The first part of the IV went way too slow so I sped it up – and it went in way too fast.  I didn’t “feel” it – but just based on time.  I knew it should take 2 hours at least.  It wound up taking 1 hour and 45 minutes, which meant the last 3/4 of hte bag went in way too fast.  45 minutes for 3/4 of the bag – and an hour for the first 1/4.  Oops.  No big deal.  I know for next time.

On Friday, I went back for another teaching.  This teaching bag would be mine to take home to do.  The bag on Wednesday had 25 grams of Ascorbic Acid.  I’ve done these many times.  The bag on Friday had 50 grams of Ascorbic Acid.  I’ve not done one of those bags since 2009.   The first half of the bag went well.  I was a bit hot & cold, but overall felt okay.  Then the 2nd half hit.  I kept having to pee – which indicated I was very hydrated.  These bags make me really thirsty so I drank about 40 ounces during a 2 hour period.   I typically pee about 3 times during the bag of 25, but during the bag of 50 I probably went 5 or 6 times.   The bag of 50 made me so tired that I fell asleep watching a tv show. After I was disconnected, I went to be d and fell straight to sleep.  However,  I was so well hydrated that I woke up once an hour needing to pee for the first four hours.

The IVs at home are so much  more convienent.  First – I don’t have to drive an hour (30 minutes there and 30 minutes back).  The drive there is always fine, but the drive back I am always a little exhausted.  I also can get a comfortable spot on the couch with my blankets and television.  OR I could get online and message with my friends.  The first 1/4 of last night’s bag I chatted with friends, but then I got really exhausted and got on the couch.  If I need to go to the bathroom, there is always room for me to go.  At my doctor’s office, there are 3 bathrooms.  However it seems that anytime I need to go, both bathrooms up front are occupied and I have to walk by pole all the way to the back bathroom.   It’s a “balancing” act to stand from the chairs – put the blanket and whatever else into the chair.  Then wobble through the IV room if there are others there – and check bathroom 1, check bathroom 2 and then finally walk all the way down the end of the  hall to bathroom 3.   Then wobble back down the hall, through the IV, picking up all the stuff and managing to get back into place – and realizing you have to go again.   It’s really not that bad when there are only 2 or 3 people getting IVs, but when the room is full – it’s much more difficult.

Yesterday – I moved my blanket, stood up and walked straight to the bathroom without wobbling over anyone or anything.  It was a quick walk to the nearest bathroom 6 times.   I get another IV today.  Then tomorrow I get a break on Sunday and start again on Monday.  I absolutely love my LLMD’s office.  I love just about everyone in the office.  Those that I don’t love, I do like!  They take such great care of me.  I may grumble every now and then, they may screw up every now and again – but I know they absolutely care about me and want me to get well. It’s difficult to be sick, but it’s so much easier when you’re not feeling well to be greeted with smiles & hugs.