Days 6 & 7 of Treatment

Well...how do I describe the feeling of relief and simultaneous defeat when your herxheimer reactions decrease but your overall health still sucks?  Well, it sucks.  For now, I think the absolute worst is over.  The first 5 days were pretty severe pain, and at times crippling and debilitating.  I was beside myself not knowing how long I could deal and how long it would go on.

Yesterday and today were less severe, but are still much worse than I was before I started treatment.  Before treatment, different parts of my body would hurt at different times, for periods in a day.  Now, most of my body hurts all day, and more acutely.  But, I am relieved that I am no longer bedridden.  

My knees remain the biggest victim so far.  Interestingly enough, I can trace the beginning of my lyme infection to when I was 13 and my knees were the first thing to go.  I was hastily diagnosed as having PFS, or Patella Femoral Syndrome, and given steroid shots in my knees because they hurt so badly.  So, now that my knees are the worst pain in my body, I theorize that this proves the lyme has been there the longest and is deeply imbedded in the joints and tissues there.

Other odd parts of my body that never hurt acutely before are hurting now.  Different joints in my fingers, my elbows, and parts of my toes.  Other more familiar pains are in my hips and back and neck and ankles, but all more acutely than usual.

I tried to slow down the ibrofen because I worry about what is happening to my insides at the pace of 3200-4000 mg a day, but I paid the price in its absence.  I wish there was something else I could take to alternate, but the Plaquenil prohibits any tylonel.  

I attended a lyme support group meeting tonight, which is actually a little depressing.  While I enjoy being around those who are in the same boat, I also feel more hopeless when I hear everyone's stories.  I feel bad for saying it, since I have a need to tell my story too, but hearing and/or reading stories about people's experiences with lyme devastates me, depletes me even.  Even stories of recovery offer little in the way of guidance since no two people respond the same way to treatment.  I guess I am in a negative place right now.

Day 5 of Treatment

So yesterday was horrendous and left me exhausted, especially with the lack of sleep.  Predominately it was pain in every part from the waist down, particularly in my knees.  I could barely walk.  I couldn't be comfortable lying down, so I couldn't take a nap.  I took 4000 mg of ibrofen throughout the day and I don't dare imagine how incapacitated I would have been without it.  I think I would have had to go to the hospital.  Honestly.

Today, in comparison, was not as horrifyingly painful, but it was rough nonetheless.  I took a walk in the morning, and then was pathetic for the rest of the day.  I feel exhausted.  I feel like I have been hit by a truck.  I feel like the pain will never end.  I feel like I am completely alone, despite the support of friends and family.  Unless someone can cure me and make all this nasty shit go away tomorrow, there is nothing anyone can do to help.  There is nothing I can do to help.  I am uncomfortable in my own skin.  I feel like my body is a prison.  

I cried a lot today.  I guess you could call it a pity party.  I guess you could call it being unable to cope.  I guess you could say that after only 5 days I have reached a point where I don't see how I can manage this anymore; where the lack of a light at the end of the tunnel is consuming my every thought.  I watched Under Our Skin again to see if there was something I missed, anything.  What I saw was the same stuff I have been obsessing over reading online.  What I saw was a bunch of people like me in a whole lot of pain, feeling angry and betrayed, and sad about losing their lives to this disease.  And I cried.  

I feel that I am grappling really hard to come to peace with all this.  I don't know that someone can.  In all honesty, I kind of hoped that when I started treatment I wouldn't have any Herxheimer reactions and I wouldn't have lyme disease after all.  I fear the possibility that this is forever; that I can never go back.  That what I have lost is gone for good, and that who I am now is the limit of my future potential, physically, intellectually, and otherwise.  I am totally beside myself. 

Days 2,3, & 4 of Treatment

So on day 2 of treatment I gave my doctor's office a call to see if there was something stronger I could take for the pain.  They told me to take 800 mg of ibrofen every 6 hours.  This has helped a great deal.  Sometimes it is more like 4-5 hours, depending on how bad I feel, but continuing on a schedule without breaks has made a big difference.

I have been waking up every morning at 3 or 4 am however and am unable to go back to sleep because I am so uncomfortable.  Yesterday I realized that this might be when the ibrofen wears off, so when I woke up at 3am last night I took another 800 mg of it.  I got another hour or two, but was pretty uncomfortable anyway.  I think it might be partly from laying still for so long and the joints get stiff or something.

Strangely enough after taking the ibrofen last night, I woke up with severe pain in my right knee and hip, as well as my neck and right hand and right elbow.  This is weird, because yesterday my left side was hurting more.  I am not sure why one side of the body hurts more at one time than the other.

Other than the "herx" reactions, I guess the side effects from the medication so far are minimal, which is something to be grateful for considering what those side effects are.  Overall, I am incredibly exhausted, sore, and achy, punctuated with bouts of throbbing in different parts of my body.  Some parts last for a few minutes and others last for a few hours.  I don't know what that means either.

I took an epsom salt bath today and am going to try to rest a little bit for most of the day.  I am thinking of watching "Under Our Skin" again (GREAT MOVIE) to see if there are any things in there that might help me that I missed when I watched it the first time.  If you haven't seen the film yet, you should.  It is very disturbing and illuminating and relevant to all of us.

Day 1 of Treatment

So Last night was technically my first day of treatment, but since it was only half the dosage, I guess I could count today as the first official day of treatment.

After considering the possibility of having to wear long sleeve shirts and pants all summer on Doxycycline due to the severe photo sensitivity as a side effect, I decided to go a different route and forgo being miserable during the one season of the year that I am enthusiastic about.

I am on 1,000 mg of Biaxin a day with 400 mg of Plaquenil along with a Magnesium supplement and 60 billion probiotics.  Last night, I felt a little caffeinated for a lack of a better word, and counted my pulse at 85, which supposedly is still normal for an adult.  I would just describe how I felt as "strange".

This morning I woke up with the best of intentions, but shortly after I took my dose with food, I started to deteriorate quickly.  I had read that it was helpful to the antibiotics working to go to the gym and to sit in the sauna, so that is what I set out to do.  Unfortunately, I felt so horrible that I realized I had better buy some epsom salts (also recommended to help remove toxins) and head home before I fell down and couldn't get home.  For some reason my eyes felt extremely heavy and puffy, I think because I was so exhausted even after 9 hours of sleep.

I would liken how I felt today as very similar to having the flu, just a little different in ways I can't quite pinpoint.  I could feel every single bone, joint, fiber, and muscle today.  It felt like every part of me hurt at least once.  It was kind of like a lot of my bad days all rolled up into one.  I also felt more mentally slow than usual and found I had a hard time talking on the phone more than usual.  I would describe the difficulty I have with speaking to be like Aphasia, which commonly affects people who have strokes.  I struggle to find the words I am trying to say, and often they come out all jumbled or I repeat them a bunch of times without meaning to, or I stutter.  

I took an epsom salt bath for about 15 minutes and then took a couple hour nap.  I felt a little better when I ate dinner, but now I am feeling hit by a bus again and wondering how many days will be like this.  I am considering calling the doctor for pain killers but am nervous about overloading my liver too much since the medications I am on already require me to get my liver checked frequently.

The only other side effect I can tell so far from the medication is a funny sort of metallic taste in my mouth.  Thankfully, I haven't had to deal with the baldness, loss of vision, or hallucinations so far, but I won't count my chickens before they hatch.  You should google Biaxin and Plaquenil if you are considering taking them.  A lot of people with Lyme say they get good benefits from that combination, but a lot of people also complain of very disruptive side effects.

Hopefully tomorrow will be better.  I have a friend coming to visit and we are planning to go to the beach.  I will, as I have always tried, not give up on living life because of how terrible I feel.  Sadly enough, I have almost gotten used to feeling like a bucket of rusty nails, its really the thought of this lengthy treatment that really concerns me the most.    

Perfect Imitations

I have Lyme Disease. I have had it for a long time without knowing it, possibly for 13 years. Known as the "Great Imitator", Lyme has taken hostage my life with a series of near perfect "imitations". Looking back, I am angry. I am angry that despite the long laundry list of problems I have had, I have been told by medical professionals that I "have nothing to worry about." I am angry that I have been made to feel that I should accept this way of life. That I am unworthy of further consideration or investigation. That maybe I am just a huge fuck up and it is all my own fault. I am angry that I have spent 13 years struggling with various emotional, physical, and mental problems and feeling like this was just my lot in life. I am tired of feeling like this body of mine is not long for this world, that it is not a body worth inhabiting, that it is a body filled with bacteria that is killing its host; stealing bits and pieces of the only respite I had left, my brain. I am angry that this disease has been allowed to steal my ability to speak, spell, put words to paper, and remember things, and still, the controversy and politics continue.

Nearly a decade and a half have been stolen from me. My life has been written by the spirochetes inside me. I may never be well. Every moment I wonder what I could have been, who I could be, what I could have accomplished if I had had a fair shake; if I had, quite simply, just been healthy. I live with that regret, that grief, every moment.

What do I have to worry about?