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Saturday, October 29, 2011

Treatment hiatus

     I've have a very tough 4 or 5 months. My husband quit his job (where we had insurance) so he could stop traveling and keep a closer eye on me. So, not only did we lose insurance he also took a severe pay cut. Which means NO meds. No abx, no pain pills and no mood meds.

     In an act of desperation I talked my mother into moving 1,200 miles away from the only home she ever knew (and the rest of our family) to help take care of me and my kids. I feel bad about taking her away from them, but I need someone to help us. She has been a great help. Especially dealing with me without meds and will take anyone's head off for no reason.

     I have been so depressed lately that my primary Doc wanted to have me committed to a mental hospital. Honestly the only reason I didn't go was because I was afraid of having another HUGE bill we could never pay. I was also scared they wouldn't actually HELP me. It was interesting to open my front door to 5 police officers, 4 EMT's and a fire truck. Once I realized my Doc called them, I talked them out of bring me since I was home with Toryn alone.

     That day (this past Monday) I paid out of pocket for both of my mood meds. Normally my co pays are $10 each. They cost $32 together with The Florida Discount Drug Card. Without it, the bill would have been twice that. My vicodin was $43 down from $60 something. Who knew Flagyl and Cipro were so expensive? Not me!  Even if I did go on some of the abx my pharmacy offers for free, I still couldn't afford the anti-yeast rx's. That's why my treatment is on hold. It seems as if I can actually feel the bacteria getting stronger and increasing in numbers.
     I have reason to believe my husband has contracted lyme and or some co-infections. About 6 months ago my hubby commented on several rust colored freckles that had surfaced on his ankle. I noticed there were more on his body. So, I counted them. I believe there were about 30 at the time. Now there are well over 50 of these spots and he also has at least 100 tiny inflamed pink/red spots all over his body that have been there for a few months and are only multiplying. He's also covered in bruises. Along with things like headaches, loss of appetite, weight loss, tiredness, restless sleep and the newest one: tingling in his feet. We just can't afford for him to go to a Dr any more than we can afford for me to go to a Dr.

    Like I said, things are rough and have been for a while. I know things will get better eventually. I'm just not a patient person.

Tuesday, June 14, 2011

Forever and a day since a post

*sigh* I have soooooooooo much to say but when I start, nothing comes out. I'm so confused and scared by everything. I'm flustered by the thought of simply going outside to get the mail. I keep twitching and jumping. It feels as if some sort of animal is biting the back of my neck. I can't walk straight or even semi-normal because my feet are completely numb. Dr D. (my beloved pain management Doc) has successfully controlled my headaches. Instead of the daily pain of my headaches averaging a 4-6 it is now averaging 1-3. However the pain in my neck isn't improved.

I feel the overwhelming urge to cry. I'm not sad...really, I just want to cry. I'm confused and scared. I know I could go on IV if I simply ask my LLMD. Let me break it down....I'm a type A....I like to be in control. I need to know how things work and what the step by step process is. Let's just say if there was a GPS type device for treating lyme....I would have bought it by now. IV abx brings on so many variables. I'm allergic to many abx. As a baby (about 6 months I believe) I had a severe reaction penicillin. I also suffered an anaphylactic reaction to levaquin in May 2009. When I take abx I usually suffer from every side effect.  I fear that if I go on IV abx I won't be able to tell the difference between an allergic reaction, side effects and a herx.

There's too many unknowns, too many variables and not enough people to help.  I know I'm not alone. I have my lymies. I love every one of you and think of you every day! Even with you....I still feel alone. My husband is wonderful. If he becomes anymore supportive I'll have to throw out my bras. With all that, I still feel this is my disease alone to fight.

Sunday, September 26, 2010

Doxy day 5

Overall I feel like total crap.  All day I have been attacked by muscle spasms, headaches, being nauseous and extremely tired.   The spasms are much stronger and last longer than usual.  Once it's over that muscle is very tired and a little sore.  I'm overwhelmed with a need to shut my eyes.  I slept for several hours and woke up feeling drunk.  I just want to go back to bed but I need to eat eventhough I am no where near hungry.  I'm just tired.  Sorry for the short post.

Tuesday, September 21, 2010

I finally got a diagnosis!!

After suffering from countless symptoms for over 2 years I got my diagnosis today.  I guess I should start with some background.  In July on 2008 I noticed a new mole on my knee.  A few days later it was gone, a few more days later I had a (clear as day) Bulls-eye rash.  By the time I went to my doc the rash was mostly gone and she dxed it as Ring worm.  The best way I can describe my symptoms is it was the flu that never went away.  Neurological symptoms (tingling, numbness, headaches) soon followed.

My symptoms got worse so slowly and gradually it was hard to point out all of my symptoms, let along find out what was really wrong with me.  I have so many symptoms that I honestly can't list them all. (not for a lack of trying)  to give up before the war even took place.  Tomorrow I am starting doxy.  I have never taken it before, for anything.  My entire life I have been sensitive to many abx and severally allergic to 2 (Penn & levaquin). 

So, it's official.....I'm a Lymie.  An exclusive club that no one truly wants to join.  I don't pray, I'm not religious but last night I begged anyone who would listen (the stars) to please let me have Lyme.  Not unlike many Lymies I had to become proactive in my pursuit for a dx.  I had to pay out of pocket quite a bit of $ for an LLMD who doesn't accept insurance.  He's worth every penny!! 

I feel like I'm standing on the edge of a cliff kicking over some rocks, just staring at the bottom.  I'm scared and nervous of where Lyme will take me.  I have a million questions.  I'm overjoyed that I finally have a DX and treatment plan.  I feel extremely comfortable with my Dr and confident in his abilities.  A fellow Lyme patient of his (for 15 years now) just so happened to be in his office today and I had the pleasure of speaking with her.  She told me that Dr R saved her life and assured me that I was in the right place for the help I needed. 

I'm overwhelmed.  The most basic thing about me that anyone knows is that I like to be in control.  I like to know what's going to happen long before it takes place.  Now, nothing is certain, nothing is set in stone.  I don't like that.  I just hope the fear goes away...soon.