personal journey with lyme disease

Relapses, bulging disks and doctors – OH MY Part 3 September 27, 2013

Filed under: Uncategorized — iammorethanlyme @ 5:13 pm
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Feeling totally dis-empowered now by the eight days of waiting for a doctor to help me with my back, I went to their website to send an email and their computers are still being upgraded.  Wait, what’s that..Contact Us and when I clicked on it, there was the phone number and a title “We Value Your Opinion” with a box to type in.  Hmmm, should I, dare I, what the heck.  My first line was, “I wish you valued your patients.”  Subtle, of course not. I went on to detail as in as few words as I could what had transpired this past week.  I ended with, “Please tell me what I did wrong.”  Then I added my name, phone number and email address.

I thought that this would not be seen for a while and started to get angry at myself for sending it.  Apparently I had done something wrong.  Why would any doctor that you have a very good relationship with let you suffer as I have for the past week?  As I mentally beat myself up, I decided to call my Lyme doctor as I have been waiting to be rescheduled and had to leave a voice mail.

No more than 10 minutes later, the phone rings and it is my PCP’s assistant telling me that a note for physical therapy had been faxed to the number I had provided.  Could someone have possibly read that email already?  Probably coincidence, right?  My phone rings again; it is my Lyme doctor’s office.  The news is not as good.  She is still out on medical leave and will be back soon on a part-time basis.  I am concerned as I know she was being treated for Lyme when we met, but it is none of my business to ask.  When is my appointment?  Monday, NOVEMBER 4th at 9:30 in the morning.  That will be four months from the last time I saw her and I have not been well since the last visit.

Time for more mental notes to self; “Why should I be upset?”, “It’s not her fault she is ill.” “It’s almost October already, so I’ll be fine till November.”  This is me and my brain.  The same brain that had me convinced I might as well give up the idea of physical therapy and suck it up.  Unfortunately, this is not due to Lyme, this is the way I am wired.  I MUST have done something wrong to have these things happen to me.  It is easier to turn the feelings inward.  At least that is what I tell myself well knowing it is costing me a lot actually.


Relapses are the pits September 24, 2013

Filed under: Uncategorized — iammorethanlyme @ 5:58 pm
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I having been missing from life in general for the past few months.  I have run from social media rather than reach out to the friends I have made the last few years.  I have had the pleasure of entering “peri” menopause for the past six months, which has just added to the party in my body.  Holy hot flashes, anxiety like nothing I experienced before and more fatigue!  Ain’t that peachy.  The hardest thing for me is the emotional roller coaster.  I had pretty much kept it together through this heinous journey called Lyme, but WHOA, thanks menopause for making me cry because I threw out an uneaten ear of corn on the cob…are you kidding me?

I didn’t shed a tear through spinal taps, EMGs, nerve conduction tests, autonomic nervous system tests and the daily pain of chronic lyme.  An ear of corn?? I didn’t even want it.  Dave has been unfailing in his sympathy as he watches my brain flip a switch and off I go to another personality.  He has had to endure the fact that I have found the best way to get out of my foul moods is to scare the piss out of him.  I laugh till I cry while I usually hear a deep breath and something creative from his lips, like, “blow me”.

I do this all the while knowing that he has been dealing with atypical migraines for over six months that require medication and physical therapy.  I do this while he is in the throws of quarter-end at work and is currently working 12 hour days till the end of the month.  I do this because I am afraid of what I might do or say if I let the bad mood “out”.  Dave graciously accepts this behavior.

Lyme brain is what we lymies refer to as the reason why we act the way we do at times.  There is confusion, short-term memory loss, cognitive issues and a list to long for right now.  Menopause brain is a whole different creature.  If you combine the two, you get me, a person who is looking for things I haven’t lost yet.  A person who wants to do something productive, but can’t get out of her own way.  It is a good day if a laundry gets done from washer to being put away.  It is a good day if I make dinner.  It is a super day if I do more than one thing. 

I had a five week period of pure happiness mid-April till mid-May when my Bartonella was being destroyed by IV Rifampin.  I was up by 6 in the morning and out the door for a walk; something I had not done in over eight years. Then my PICC line started to leak and I had to get a new one in my other arm.  The new PICC line caused an unending skin infection that caused me to have a nurse visit every few days to do a dressing change as my infection was just weeping through the insertion site of the PICC line.  Between the leaking line and the skin infection, I was feeling worse mentally and physically.  Then Big Pharma had to add to the misery by putting IV Rifampin 600mg on backorder.  How dare they?  I don’t know how they sleep at night knowing that people are suffering because you don’t feel you are making enough profit when a drug is generic.  The backorder wasn’t for a month or two – it is until January 2014.  So we made the decision to remove the PICC line as I had the skin infection and the drug wasn’t available.

This happens with many people that are sick with many diseases.  The government and big pharmaceutical companies are in bed together.  The corruption is disgusting.  Lyme is a whole different animal in the fact that it is still not recognized as a disease.  We are lied to by the government, CDC, IDSA, and doctors who refuse to name this as a disease.  That would require insurance companies to cover it.  This would allow doctors who believe in Lyme and it’s co-infections to adequately treat patients without the fear of being taken to court.  This would make treatment local and not make us drive to another state for treatment.  The cost is not just in money, but in the stress the trip takes on the Lymie and, in my case, the fact that I am unable to drive (yet) and depend on other people to help me.  I have wonderful people!

Oh, look, off on a rant I go.  Not really a rant as I don’t have it in me lately.  So to wrap up this odd attempt at blogging again, let’s just say that I don’t have the mental ability right now to read all the incredible information that is put on Facebook by people dedicated to fighting with everything they have to bring Lyme to the forefront of the news, where it belongs.  I plan on re-entering that part of my life.  I want to contribute; I want to be there with information and support for other people suffering with the endless disease.  I did do that for a long time.  Right now I need quiet.  I need to stop all these voices running around in my head telling me what I should be doing and making me feel bad all the time.  I need my friends who might read this to know that I am keeping you in my prayers and hoping you are fighting as hard as I am.  Thank you.


With Lyme, all you can do is try March 8, 2013

Filed under: Uncategorized — iammorethanlyme @ 6:28 pm
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I will blog a lot about Lyme as I have been housebound for over 7 years with Late Stage Chronic Lyme and underlying MS (which are basically the same thing once you read enough about the diseases.)  This is just about me, my Lyme and the snow the past two days.

Where I live in Massachusetts, we have been blessed with almost another two feet of snow that the weathermen did not see coming. Four to eight inches was the best estimate.  WRONG.  This storm is still hanging around 36 hours after it started.  Not blizzard conditions, no power loss, just a lot of wet, heavy snow to shovel.  How would I know that, you ask?  Well, let me tell you………..

Yesterday, Dave shoveled before he went to work at 7 am.  I am home as I have mentioned before with my ancient dog, Madge.  Madge is not shy about using the kitchen floor, in the middle of the night, to pee – lovely, I know, but she’s 15 1/2.  The rest of the time she needs to go outside.  By 10 am, Madge needed to go out.  I went to the back door and could barely push the storm door open as the snow was blowing in at the back of the house.  Madge weighs maybe 12 pounds, so as tempted as I was to toss her out into the snow, I knew I could not.  I grabbed my dusty snow boots, snow jacket, grabbed a shovel from the front steps and started digging my way out the back onto the wooden deck and Madge followed behind me waiting to get down the stairs.  Stairs are not my friend, wet wooden steps are just begging for me to fall down them.  I cautiously cleared the steps to make a passage for the dog.  There was pure joy as she relieved her full bladder and happily ran back in.  No worse for the wear, I headed to the front steps to see what I could do to get the lazy ass mailman to stop and deliver my mail.  I don’t like my stairs, no one likes the stairs to this house as they are awkwardly spaced in length, width and height and could cause an injury if you misstep.

I cleared as much as I could before I started hearing my heartbeat in my ears and could feel some rumbling in my chest when I drew a breath.  This was in less that half and hour!  In I came and as I was taking off my boots, I heard that mailman (bastard) drive right by!  Just like putting salt on a wound.  I sipped water, took deep, slow breaths and had a cool cloth for all the sweat that was now pouring off me – YEAH, DETOX.  My brain is yelling at me that I know better than to do any type of cardio work as last time I did, I ended up relapsing and am still coming back from that a year later.  When Dave came home, I played it down like it was no big deal, I didn’t do much, etc.  He worries enough.

Yep, there is more.  Today dawns with an unexpected dumping of overnight snow and Dave is out there again trying to shovel out to go to work.  He was concerned about his Dad, who lives close by, as at 85 he still goes out to shovel.  I knew Dave would drive by the house as he headed to work and sure enough his Dad was out there with a shovel.  Dave came home as the driving was lousy and he redressed in the snow clothes I had thrown in the dryer and headed over to his Dad’s house.

While he was gone, the snow continued to pile up here at a rapid rate and again the back door was blocked.  Okay, I can do this.  I will just go slowly.  I will wear gloves this time.  I will put the house phone and my cell phone in my coat pockets.  Out I go, with Madge right behind me.  This snow was heavier, throwing it over the railing was difficult.  Using my right side more as my PICC line is in my left arm was causing pain in my lower back.  I didn’t clear the steps this time, just pushed the snow down so it was like a slide.  This was fine with Madge and she was right back in the house.  Hmmmm – should I?

I decide to go back to the front steps again as I was expecting medication in the mail and the jerk didn’t stop yesterday.  I had heard the mail truck making it’s run down the opposite side of the street, so out I went.  I could only go so far on one set of steps, but the ones that run right along the front of the house, I cleared all the way down.  I am just going to go back up them when I hear the truck coming and then I see it passing by – WTF?  I hollered, “HEY, gotta any mail for me?”  He stopped, backed up and said that they are not supposed to stop if the stairs aren’t cleared.  I said, “I’m not supposed to shovel because I am disabled, but I am looking for medication that was supposed to come in the mail yesterday.”  He checks and lo and behold, there is my medication.  Did I say he was a lazy ass.  I grab my mail and medication and head into the house feeling successful.  Now inside, I am dizzy, wheezing and my heart is pounding.  I repeated yesterday’s process to calm down.  After a good five minutes, I check my heart rate and it’s 148 – that’s like an aerobics class.  Great, Kath, just great.  Am I trying to set myself back?  Absolutely not!  I am trying to do what I thought I needed to do for me.  So I accomplished that as I got my medication I needed, but now my back hurts and my forearms are tight.  I joke that at least I still have muscle somewhere, but the heating pad is calling me.  Dave comes home about 15 minutes later and says, “you are beet red – did you just come in?”.  Yes, yes I did. He worries enough.

Lyme will be with me always and I am just trying to do what needs to be done when I have to and sometimes I will pay a price for it.  Hopefully, muscle fatigue and a little pain is the worst of it this time.


A blog a day? March 6, 2013

Filed under: Uncategorized — iammorethanlyme @ 6:34 pm
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Wow, so much for saying it shouldn’t be hard to spend 15 minutes writing a blog each day – it’s after 6 now, I have no idea what is for dinner (and I really don’t care) and here I am.

I have started a new schedule in the morning of using a portable infrared sauna for 15 minutes every other day to detox.  Most people I know do this at night and then shower and say they sleep well.  Well, not me – I would sweat ALL night and I have enough sleep issues as it is now.  Monday, the first day I used the sauna, I did not sweat at all while I was in it.  I sweat when it reaches 65 degrees out – what is going on?  Then I showered and then I started sweating….for the next two hours.  OK, so I’m slow to the process. ( I have also added homemade smoothies to help detox as my other meal besides dinner.)  I was tempted to try it again on Tuesday, but realized that I could be making a big mistake as I am still titrating the Rifampin and herxing from that medication.  I did not need to send my body into a spiral when I only have the fabulous 15 year old Cairn terrier, Madge, to help me.

I woke up today, dry brushed my skin while the sauna was heating up, grabbed my Kindle to watch EPIC FAILS on youtube and in I went.  OM What the heck?!? I was sweating before I even turned the Kindle on!  Yes, that’s what’s supposed to happen.  Uh-oh, I forgot about my PICC line and what if that gets wet? That would mean a nurse visit and dressing change.  Luckily, just the tubular gauze that covers the dressing just got damp.  Now to the shower where I continued to sweat.  Now to get dressed…..and sweat.  Dry my hair – I don’t think so.  After about 2 hours and my IV and being on Facebook, the sweating stopped.  Then I got cold. Shivering cold. Ridiculously cold.  I went to my recliner, turned the heat on and wrapped up in a blanket AND fell asleep.  That isn’t what I wanted either, but I certainly don’t want to be doing that every other night when Dave is home and I actually have company (sorry, Madge, you just want me for treats).

Noon and I haven’t had a bunch of pills or anything to eat.  Smoothie and pills away!  I get through some paperwork and make a few phone calls and Amy shows up for the highlight of my past 6 weeks; going for a haircut.  Yep, love seeing Amy, but need that haircut, need to get out of the house and see my friend, Jen and feel better about myself.  I’m a simple girl, no need to try and cover my whites as they are well earned and look like highlights.  Now I won’t mind sweating so much as my hair won’t be sticking to my face and neck.  It’s those little things in life that mean so much to me.  It’s what makes me able to get back in that sauna come Friday and sweat the toxins out of me.  Oh, Lyme and your friends, you have picked on the wrong person!  Till tomorrow, goodnight!


Time to get back to blogging March 5, 2013

Filed under: Uncategorized — iammorethanlyme @ 8:21 am
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Hello to anyone who follows my blog and please accept my apologies for the last few months of not blogging.  I really need to spend just 15 minutes a day to write something, so this is day 1 and here I go:

I have had the great fortune to reconnect with friends that I have not seen or talked to since school days.  One of these friends, Cindy, is just the same as I remember her in her mannerisms, voice and eye contact.  She is brilliant, funny and truly listens when you talk.  I decided to start my blog with Cindy because we have been going for coffee here and there and she has been very interested in my Chronic Lyme as I have been in her agoraphobia and anxiety.  She is a consistent writer and blogger and is so very open and honest about her life and struggles which makes her very brave to me.

Cindy also complimented me one day and it stopped me in my tracks as I usually respond to compliments with sarcasm or self-deprecating remarks.  This is what Cindy said, ” You are so gracious in your illness.”  My mouth opened to make a quick retort and my mind took over and I said “Thank you, what a lovely thing to say.”  That statement comes back to me over and over and the meaning of what she said does not lessen, it grows.  Is there anything more lovely that someone could hear who struggles just to get out of the house and do something as simple as go for coffee and chat. Cindy has no problem coming over to pick me up, doesn’t mind when I have to cancel due to medication issues and understands that I’m good for 1 1/2 to 2 hours and then she brings me home.

Am I gracious in my illness?  I believe that I have always tried to be as nobody in my family or friend circle had anything to do with my contracting Lyme.  They have been there every step of the way watching me suffer during the years of bad doctors, then good doctors with medication that makes me sick as I try so hard to rid myself of as much of Lyme and it’s co-infections.  They take me to appointments, they wait with me, they speak up for me, they comfort me, they understand when I don’t want company and when I just need it quiet as my mind is making enough noise on it’s own.  My husband, Dave, my sister, Donna, and my oldest daughter, Amy are always giving their time to take me places.  They, along with my friends, also just take me out to get out of the house!  I know if I am in a bad place, I have learned to just say I am and that I don’t mean to be short with anyone, I just can’t put on an “act” at that moment.  Otherwise, I like to smile and laugh and not let this disease become who I am.  Yes, I talk about Lyme a lot and how I am feeling as Dave needs to know.  I talk about it if friends ask.  I post a lot on Facebook to Lyme groups but also on my home page as I am trying to get as much information out to the public as I can.  When I apologize for not talking, Dave says that I do not need to apologize as I am the one going through the pain that he sees etched on my face.  He says it is just hard to watch.  I believe him as I don’t know how I would be if I had to watch someone I love go through this process!

So, whether I am gracious in my illness is in the eye of the beholder, I guess.  I do know that Cindy’s comment has left an indelible imprint on my heart and I am happy to be able to recall those words when I need it.  Thank you, Cindy.


New Round of Lyme Medications December 11, 2012

Filed under: Uncategorized — iammorethanlyme @ 7:34 am
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December 9, 2012

Yesterday I started on two new intravenous medications; 500mg of Zithromax and 500mg of Flagyl.  As this was the first time having these drugs by IV, a nurse visit was necessary as was taking each medication separately to watch for any reactions.  This required a nurse visit of at least three hours and she was not coming until 2pm.  This was already going to cause a disturbance in my other medications and supplements, never mind my nap!  Three hours with a nurse I had not met was causing me some anxiety.  Not that I mind someone needing to be here, in fact I am very grateful that someone is willing to give up a good portion of a Saturday to sit with me, but just a generalized anxiety.

As I now had the morning free, Dave went in search of Christmas decorations, missing stockings (yes, I still do stockings as they are fun), and we came across my Mom’s holiday decorations.  Last year we just packed everything up when she died in November and didn’t have any time to think about them.  I went through the box and picked out a handful of ornaments that had meaning to me and even found one that my daughter, Amy, made when she was probably 4 or 5.  I know she will like to have this one.  Then Dave comes out of the room with a small fiber optic light tree and I almost said “trash it”, but instead had him plug it in.  It is now in my front window and it made me happy to have it on all day yesterday in the dreariness.  My Mom is definitely around me all the time now!

Now I am still trying to get my medications in and eat lunch so that I am not starving during the nurse visit.  I tried to nap, but it was too early.  Dave decides to run a few errands just before the nurse is to arrive so that it will be easy for her to park in our crazy shaped driveway.

Pam shows up about 10 minutes early and I like her immediately.  She has taken the time to print out information on the medications for me and goes over them so we both know what we are watching out for in the way of reactions.  Now she hooks up the first IV – 500mg of Zithromax and gives me some great tips as she is doing it.  I am supposed to let her know of any issues, such as headache, dizziness and any of the more dangerous side effects.  It is a slow running IV and I keep turning up the speed of the drip.  Yes, I had a headache and was dizzy, but it passed.

Dave returns from his outing with a few bags and is happy to announce the savings he received on some holiday trays and pans because I have so many points earned at my pharmacy, we get most anything at almost half-price!  He is very comfortable with Pam also as he is chatting away while making “Crabbies” and Tollhouse bars for a party that he is going to later.  I was laughing as he was so funny and relaxed while toiling away in the kitchen.  My how the years of my Lyme have changed things!  He also kept refilling my water and asking Pam if there was anything she wanted.  I loved that he would ask me questions just to make sure he made his treats right and he cleaned up as he went along.  This man that I have known since I was 12 still surprises me and has opened up so much because of my illness.

It takes two hours to finish the Zithromax IV drip and I am feeling pretty tired.  Pam wants to know if I want to move to a different seat, but I say no.  She unhooks the Zithromax and starts the 500mg IV of Flagyl.  This one should only take an hour.  Now my eyes are starting to close and Pam insists I move to the recliner in the living room for comfort and to close my eyes.  I am being treated like royalty!  The minute I get settled in the recliner with my legs up and the heat on, I must have dozed off as the IV is done!  I have survived this medication without incidence and am extremely happy.  It is now 5:30pm, so it has been a 3 ½ hour visit that passed quickly and actually was enjoyable between Pam and Dave.  Pam actually shakes both our hands and tells us she couldn’t have enjoyed a Saturday visit more.  That was such a lovely thing to hear after a long day.

Dave gets me settled and makes sure I feel alright, insists that I call him if anything changes and gets his treats together and heads out to the party.  I know I can call him, my sister, Donna or my daughters, Amy and Meg, if I am not feeling well.  I am happy that Dave gets to go out and enjoy time away from me.  He is either working, here with me, running errands, doing things for other people and I just want him to realize that I know how important it is for him to do something for himself.  I also know that I am going to be a slug on the couch for the night watching whatever I want to on TV.

I have two more days of both medications and then I just do the IV Zithromax from Tuesday to Friday.  I know that I will more than likely “herx” within 48-72 hours and am prepared for the discomfort.  This is part of the process of kicking Lyme and co-infections.  But I will not worry about it ahead of time as that is a waste of time. Kathi



Juicers, supplements and myofascial massage, OH MY July 3, 2012

Filed under: Uncategorized — iammorethanlyme @ 7:18 pm
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Well, here I am deciding for myself what I am going to do and see what changes I notice.  I finally have my heart palpitations under control with the help of one little pill and have an upcoming echocardiogram to check my heart to be sure there is no damage from Lyme.

I have been taking Alinia (anti-parasitic) since June and then started Propax with NT Factor to help repair my damaged cells.  There are 5 capsules in each packet and you are supposed to take two – three a day with food.  At $60 for 60 packets, I am taking them twice a day.

I bought an inexpensive juicer that doesn’t handle lemongrass, but I don’t think I care much about that.  I made my first fresh juice today out of kale, granny smith apple, strawberries and blueberries.  I made a mess due to the blueberries, but the juice was good.  It only made 12 oz. so if I am going to all the trouble of the cleanup afterwards, I am going to try and fill the 48 oz. cup it comes with and store the leftovers.

I also had my husband pick up items so I can use the blender to make breakfast smoothies as I always seem to skip breakfast.  Almond milk, non-fat yogurt, coconut water with any of the fruits and veggies should be just delicious 🙂

I am almost ready to try the gym again or plead with the physical therapist to work with me, but last night I had an hour long myofascial massage with some Reiki mixed in.  The massage therapist was aware I have Lyme and I explained about cramping and spasms and then just laid on the table and let myself go somewhere else.  That hour flew by!  Then 3 hours later the side effects kicked in with light-headedness and a headache starting at the back of my neck.  I started to feel beat up so I knew toxins were being released.  I went to bed happy and woke up needing to use my Craft-Matic control to raise the bed to sitting position so I could get out of the bed – ugh!  Still, I was happy as this meant my body was responding to the massage.  My next few massages will just be for 1/2 hour as we “peel away the onion layers” without overdoing it.

So do I think I know if what I am doing is better that taking antibiotics?  Right now it seems like it and I’m sure my stomach is happy with the decision.  I guess I will know more when I get the specialty blood work drawn in a few weeks before I see my neuro-lyme doctor.  Then when I see her I will get to have the new Bartonella test done and I am very excited about that and I am going to ask her to test me for brucellosis.

Sorry there was no humor, just an update, but it’s 8 pm here and I felt the need to post something as it’s been too long again.  I wish I was as good at remembering to blog as the bloggers I follow!  Happy 4th and let’s see what the weather brings for the day.  Kath