Deep Down in the #LymeDisease Wasteland

They said it would probably “get worse before it gets better”, but I never could have imagined just how bad “worse” could be – and “better” doesn’t seem to be available right now. It has been nearly a month since my last post here, which I wrote as my neurological problems were getting bad and scaring me, I have wanted to talk to you all again and let you know how things were going but I’ve been unable to because brain infection. It is shocking and terrifying to me how badly I’ve deteriorated since my last post, and it is hard to write, but I will try to do this anyway so please bear with me and please the forgive typos, bad grammar, incoherency, and grumpiness that may show up here.

My doctor had wanted me to go on IV antibiotics, “the big guns”, but because he is 50 miles away and I am cash poor and physically weak, it isn’t something I can do right now as it would require that i drive 100 miles round trip every single day for at least a month (but probably much longer because I have been ill for so very long) to get daily infusions, so when I went to my last visit they put me on a powerful oral antibiotic that can get at the infection in my brain (most drugs cannot cross the blood-brain barrier which is the body’s way of protecting the brain from medicines that could wreck stuff up in there, which is why severe late stage Lyme patients are given IV meds which can cross the barrier, Ceftin is an oral antibiotic that is very similar to what they use in IV treatment and it can cross that barrier into the brain but not as well as IV meds and not nearly as quickly as IV drugs can). So my medicines now include the Ceftin to kill the borrelia that we hope can help my poor brain, along with the icky yellow gloppy Mepron and Zithromax for the Babesia, and the anti-fungals, a bit of pain medication, and something to help take the edge off the horrible anxiety attacks that I’ve been getting due to certain places in my brain that are under attack and how these diseases screw up the adrenal gland.

Just a few days after I started the new medication, at the end of January, my husband came home from work and went straight to bed because he didn’t feel well. An hour later he was violently ill and this continued throughout the night and all through the next day – and then it happened to me, and then my children. We had all come down with the dread new nasty strain of norovirus. Husband was violently ill for 48 hours and then very weak and run down for 2 more days after that, but because he got sick first, thankfully he was able to get out of bed to help my little boy when HE started throwing up, because I was completely incapacitated and either in bed feeling like death or in the other bathroom fearing that death was imminent (because I was choking on what would not stop coming out and struggled to gasp for breaths), and then my little girl started throwing up as well. The violent sickness ravaged me for 3 solid days & nights, but on the 3rd day I was able to start helping with the kids who were so very sick. My son got better after about 2 days, but my daughter was sick for a full week and of course missed a full week of school, and my husband missed a full week of work (and there was no sick pay because he has been at his current job for less than a year so there is an entire paycheck lost). It was a horrible week. While stricken with the norovirus I had to abruptly go off ALL of the medicines I had been taking to fight my tick diseases and manage my symptoms, and the pain resulting from that was so bad that while I was afraid I might die, I also began to think I would welcome an end to the explosions of pain happening in my neck, my back, my head, and from the insides of all of my bones. When the virus finally finished with me, I was told to wait for my insides to settle before going back on my meds and then gradually add them back, saving the Ceftin for last because it is hard on stomach. The pain was so awful that I started taking whatever I didn’t have to eat with as soon as I could, but I have only been back on everything for about a week now.

The Monday after we all had norovirus, my husband woke up at 4am with really bad pain in his abdomen. He had a temperature of 94 degrees and looked awful. The pain kept getting worse and he was so pale, I was really frightened so I called hubby’s mom and asked her to take him to the ER at 6am since my daughter was still sick and I needed to be here to take care of the kids and also because I was in no shape to drive him anywhere and was probably still contagious anyway. He spent the day at the hospital and was told that his gallbladder had gone bad and they wanted to operate right away to take it out. Husband was feeling better by the time the doctor got around to seeing him, so he declined the surgery and came home, and I did what I could to find out about his condition and learned that fatty food can make it worse so I’ve been trying to get leaner food for him even though it is more expensive to do so.

Going off of all my meds really set me back badly and my brain symptoms got really bad, I have trouble talking out loud because I lose words for things and I lose my train of thought mid-sentence. I forget all kinds of stuff, and it is not just annoying but unnerving. I feel stupid, just completely dumb and useless, and very very sad and afraid because I’ve lost so much of myself, and it is so hard to even compete a thought before I forget what I was trying to think of. Of course that doesn’t help the anxiety or my terrible mood and I’ve got headaches that just totally flatten me. The brain drain doesn’t end there either, something has gone wrong up there that has made it really hard to walk; my balance is all screwed up and I can only take teeny tiny steps which makes it take freaking forever just to get across a room and exhausts me and makes my feet hurt a lot. There was an ad to raise awareness of an unrelated brain problem some years ago, and the way it looks when I try to walk now kinda resembles the sick man in the video, only my steps are smaller and slower. Maybe you’ve seen this ad, it used to be on a lot (I can’t embed this one so follow the link to You Tube if you want to see):

Normal Pressure Hydrocephalus

These damned tick diseases wreck a person up more than most people can even guess when it has gone un/misdiagnosed and un/mistreated for a long time like mine has. It shouldn’t be this way, but it is, and more and more people are going to end up ruined like me if something doesn’t change soon. Watch Under Our Skin to get a better understanding of what this sickness does and why few doctors bother to do right by infected people before it gets so bad:



I am in so much pain all of the time, I can barely stand it. My neck, my back, my bones, my hands, wrists, shins, feet, all ache and then there is the pain from inside of my bones and now I have this sensation of someone trying to drive railroad spikes through the soft insteps at the bottoms of my feet and these really messed up charlie horse like muscle spasms in those soft parts of my feet that are so bad you can actually SEE the lumpy muscle knots very clearly when these attacks happen, and they happen many times a day. It sucks.

I was advised that on the Ceftin that I’d probably feel worse before I felt better (IF it works and I ever get to that “better” stage – if it does not work than the last option will be IV antibiotics or giving up and God only knows what will happen then), but I had no idea it would be this bad, maybe it wouldn’t be so bad if I hadn’t spent that week off of everything while throwing up my guts, but all I can do is wait around and hope that “better” will come soon and that it doesn’t get any worse than it already is. It is taking me forever to write this, I started this post 5 hours ago but have to keep taking breaks because I can’t concentrate and I am tired and I hurt. I miss blogging, I miss blogging about stuff that is unrelated to my illness. I miss having interesting things to say, and I miss my brain. I need it back.

Everything else is going wrong too, all at once.

My children’s insurance company took the premium payment that I’d sent to cover January, but I found out, when I had to take my kid to the doctor for an earache, that they’d cancelled my children’s insurance (but they didn’t give back the money they took) without bothering to tell me so I got stuck with a bill for $178 (that I have no money to pay) for a ten minute doctor visit for my kid and they said that there was a form which needed to be filled out to keep the insurance that I never got. So I have to apply all over again and give them more money and wait for them to turn it on and hope no medical emergencies happen with my kids before they have insurance again.

My car’s inspection is due but it can’t pass inspection because my tires are in bad shape (two tires in particular have slow leaks which requires them to have air put in every few days because they go flat) and I cannot afford the new tires that I need to pass inspection, and my registration is due for renewal in March and I have no idea how I will cover that, either. Without the car I am trapped here unless my husband is home with the other vehicle which means I can’t go anywhere or do anything and it’s going to be another obstacle in between me and my own medical care and of course there’s also a problem if something happens that means I need to get my daughter from school early or if there’s an emergency that I need to drive somewhere I will risk getting a ticket that I won’t be able to pay.

It has been incredibly cold here and all the heating oil we’d gotten at the beginning of this year ran out last week, I had enough to buy 20 gallons more so we could have hot water, but I’m using electric heaters to try to keep warm in an effort to make the oil last a little longer, but it is so damned cold here that the little space heaters can’t keep up and they are running up the electric bill, which is also due very soon. And because when it rains, it pours, the bill for my internet and phone service is past due and I will be losing both in just a few days barring a miracle. It’s true what they say, one missed paycheck can really lead to a total financial catastrophe for a family in this miserable economy, and the prices for every damned thing continue to skyrocket. And the paychecks my husband has gotten since the new year began are smaller, thanks to all of that fiscal cliff idiocy of our tyrannical ruling class overlords. A pox on them all. Thanks, leftists and low information voters, I hope you are feeling some of this pain too!

I’ve now spent about 7 hours on & off trying to let you know what’s going on, but I am sure there are things I’ve forgotten but if I included it it would just look like more whining from me because I am in a very bad place right now in my head and in my body, and as much as I wish it were otherwise, I just don’t have anything positive to say other than the fact that I love you all and I am so grateful to you for being here for me because I don’t know what I’d do if I didn’t have caring friends inside of my computer, and also, my kids are wonderful and brave little people who make me proud every day to be their mommy, and our pets are very cute and a great comfort to us all.

I apologize for all the whining and if this is a rambling mess, but this is my life right now. Prayers would be greatly appreciated, as would good luck wishes for the new medicine to start making me better some time soon. I was told that it would be at least a few weeks before it would start to make a difference, if it works, and that it’s a slow process, maybe it’s helping some already because as miserable as I am, I could at least get on here and type some even if it took half the day, and if i am late taking a dose I start feeling all kinds of bad head pain so that may be a sign that it IS actually doing some stuff in there. I go back to the specialist next week, if I am able to overcome all the obstacles that stand between me and my ability to get there, and if they think this medicine is starting to work I will probably be on it for a while and hopefully have better news to report, and I am hoping that maybe they’ll have some ideas to help manage some of the miserable symptoms that make me physically and mentally very uncomfortable. Well, my head hurts, my hands hurt, my eyes hurt,and my neck hurts, so I guess that’s all I have to say for now. If my head fog clears some I will try to get back to doing some blog posts about something other than this damnable illness some time soon so hopefully there will be more interesting things happening here aside from the great stuff my co-bloggers put up. Well, I’ll try to do that IF I manage to keep my internet, which i don’t know if I’ll be able to do. I hate living like this, I really do.

Lines from an old Nine Inch Nails song that I can identify with:

And all the world’s weight is on my back and I don’t even know why.
And what I used to think was me is just a fading memory.


I miss me, I hope she can be brought back.


UPDATE February 26, 2013 10:50 AM:

Thank you to friends who’ve prayed and helped! I am still here, and so are my utilities, and the house is warm. I still haven’t been able to take care of the car, but that’s a worry for another day because today my husband is in surgery to have his gallbladder removed. I had to stay home to get the older child off to school and to care for our younger one, so at this moment I am waiting by the phone for news of my husband as he has been in surgery for over an hour now. Please keep my family in your prayers.

Husband had continued to get gallbladder attacks throughout last week and missed more work, so I had to find him a doctor and then go all “fire breathing Zilla” on some doctor’s office staff who tried to tell us that husband would need to wait for nearly a month just for a CONSULT appointment with a surgeon for the surgery that they had insisted he needed immediately, and eventually a surgeon was found. The surgery is supposed to be fairly simple, but because his job is very physically intense he will miss at least another week of work and he does not have sick pay coverage so there will be more missed paychecks and more worries – but I can’t really think too much about that now, all I want is for the phone to ring with news that he has gotten through his surgery OK. Please pray for him.

In my own medical nightmare news, the new medicine appears to be finally working because my head is clearing and I can move around better, but then I got a flare up of the so called “flu like symptoms” that accompanied some of my prior acute Lyme infections, and those symptoms for me are like a sinus infection combined with bronchitis and hives. I’m still dealing with that, but this annoyance is infinitely preferable over the neurological horror so I am grateful.

Thank you to friends who linked to or blogged about this post: Sally and Sam, The E-Blast, ConMom, LadyRaven’s Whiskey in a Jar, Grumpy Opinions, Hogewash, and, Goldfish and Clowns.


UPDATE II February 26, 2013 12:04 PM:

I just got word that my husband is out of surgery and that the operation “went well”. Nobody can see him yet though while they wait for him to wake up to see how he really is, so it will probably be a few hours before I know anything else. Thank you for prayers. Once I know that he will be OK I can resume worrying about how we are going to deal with new medical bills amidst a lack of paychecks, but for now I will just say Thank You to God for getting my husband through his surgery.



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