Lyme Disease is the New AIDS

Great article and infographics on Lyme.

Lindsey's Lyme Life

I want to share with you guys a piece I wrote on Facebook back in May, for Lyme Disease Awareness Month.  This is the second year I did the “Take A Bite Out of Lyme” challenge and instead of just biting a lime and sharing a fact about Lyme Disease, I decided I needed to ramp it up a bit :)

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Still Alive!

It’s been ages (over a year) since I last posted. I just haven’t felt like writing/talking. I’m still taking lots of meds. I’ve done various 3-month regimens of meds – mostly 2 weeks on, 2 weeks off with labs (blood work) done after the meds. My labs are always coming back clean – no problems with the abx side affects. I visit the doc every 3 months. I don’t feel like I’m getting any better, but I’m not getting worse. It’s ups and downs, though I never really feel normal/great. I’m sick and tired of being sick and tired. I’m now taking one set of ABX for a week, a different set for the following week, then 2 weeks of no ABX (recovery). Plus, of course, a bajillion other pills and supplements. (Have I mentioned Mepron SUCKS?)

During my absence from blogging, I started a new job that I’ve now been at for over a year. It’s a much lower stress job. Nobody there knows I’m sick, though one co-worker caught me taking my ~30 or so pills during lunch one day. I just told him I had some medical issues. At my last job, they knew I had Lyme and they treated me differently once it was known (part of the reason I left). At this job, I’m trying to keep it quiet. I don’t really enjoy this new job a lot, but it pays well and is relatively low stress. I’d like to get a new job, but I’m not sure changing jobs and/or taking on more responsibilities (stress) is a good idea.

I still have anxiety issues (and I’m on meds for it) – some days worse than others, but even very mildly stressful things cause me problems (and didn’t before the Lyme). I have shortness of breath occasionally, am fatigued/low energy half the time, anxiety problems fairly often, joint stiffness, and I just generally feel sick most of the time. I guess that’s better than it was. It’s hard to even name my symptoms now because I’m so used to them.

I’ve pretty much gotten used to my life now – this is my new normal… which sucks and is kinda sad really. I’ve kind of lost hope that I’ll ever get fully better. Maybe that’s the truth and it’s better to accept it now. I’ll still take my meds and follow the doctor’s advice and hope it helps, but it just doesn’t feel like I’ll ever be “normal ” again. Of course, that’s easy to write today when I took Mepron this morning and feel awful right now.

Oh – I’m still on a gluten-free, low sugar, low caffeine diet, which also sucks.

There was a great quote in the movie “Whiskey Tango Foxtrot”: “embrace the suck and move the f*** forward”. I think that will be my new mantra.

I’ll try and post from now on, at the very least, after the doc visits.

April 2015 update

I went to my second visit with the new doc earlier this month. They put me on this regimen for 14 weeks – two weeks on, one week off for 2 cycles, then 2 weeks on and 2 weeks off for 2 cycles. This regimen includes Mepron, more Artemesin (but only MWF, not daily), and Flagyl. I’m in the second week of the first cycle and these meds (or the herx or whatever) are rough.

  • Extreme nausea. All day long I feel like I’m going to throw up (but never do). I went to bed last night feeling that way and woke up to it this morning). At points it’s so bad I can’t focus on anything else.
  • Bad headaches – like my head is in a vise.
  • Face feels hot/flushed – doesn’t hurt or anything – just weird.
  • General flu-like feeling.

I’m not sure I’ve felt this bad so consistently before. Even my off days (meds are MWF) are bad, but the weekend wasn’t horrible. Thursday and Friday I get to take Flagyl with the others too.

The doc told me to focus more on detoxing: drinking lots of lemon water and green tea, saunas, epsom salt baths, etc. I’m trying but it doesn’t seem to help much. I just want to crawl in bed and sleep it off… if only it were that easy.

March 2015 update

Not a lot of new things to report. I still feel “sick” almost all of the time, but I have a few more bouts of semi-normalness. I’m dealing with it better than before, but every now and then it overwhelms me. I don’t want to be sick any more. Fatigue/stamina seems better, which is good. I’m not winded any more just going up and down the stairs at home at least. So, I think I am getting better, slowly.

The antibiotics still make me feel sick. Flagyl’s not as bad as I thought it would be. The big thing I’m dealing with now is “anxiety”. It happens most mornings and nights and sometimes during the day. I wake up with anxiety and any little noise in the morning startles me and makes my heart race (but once I’m out of bed it subsides). It makes me feel rundown during the day with chest tightness, headache, etc. I’m pretty sure it’s caused by stress – it spikes when I have any little stress at all, but it happens even with no stress (or I think I have no stress). I think the lyme just magnifies the effect of stress on my body. I’ve never had a problem dealing with stress before lyme. I’m dealing with it, but it sucks. Next doctor visit is April 2. Maybe they’ll have some advice or something to help. I probably need to start doing yoga or meditation or relaxation techniques or something.

February 2015 update

Still alive and fighting. I just finished my first three weeks of the new treatment of pulsing antibiotics… 2 weeks on, 1 week off. Also still taking LOTS of supplements. Today was day 1 of the second three weeks. It wasn’t as bad as I expected. I can still function through it mostly. I only had to take one day off of work during it because I felt so bad. The Flagyl wasn’t as bad as I expected either. Yesterday (I had been off antibiotics for a week) was the best I have felt in over a month. I pretty much averaged a 5/10 for how I felt the whole time, with a dip to 4 for the really bad days and the last couple were sixes then a 7. Hurray for seven!

Bloodwork came back ok… my EBV test shows elevated values which means it can trigger mono symptoms and could be the cause of some of my fatigue issues. Doc just said get plenty of rest and fluids, which I am trying to do already.

So now I’m just plugging along with my new 3 week regimen and trying to stay in good spirits as best I can. Long road ahead.

January 2015 update

My December 24 doctor visit went very well. We decided to change doctors and stick with them. Lots more vitamins and supplements were added (18 different pills a day which equals 50 pills and that doesn’t count antibiotics). Right now I’m in week two of an antibiotic layoff… no antibiotics for two weeks to start with a clean slate. This Sunday I start pulsing antibiotics, meaning every other day for some, only Thursday/Friday for another, etc., and every 3rd week is no antibiotics. I need to setup a calendar to keep track of all of it.

They also changed my diet so it’s not as hardcore: totally gluten-free, avoid sugar (but I don’t have to totally eliminate it), and I can have one small cup of coffee per day. Still not great, but much better than the previous diet.

I’m doing ok, pretty much the usual. During this antibiotic layoff I now get fatigued very easily (up and down a flight of stairs at home and I’m fatigued) and some brain fog. I still get anxiety/palpitations morning and night, and stiff neck/shoulders throughout the day. No biggie. It’s funny how you get used to the “new normal”. We’ll see what happens when I start the new antibiotic regimen. Flagyl was added which I hear can be a butt-kicker. I’m hoping the herxing won’t be too bad.

Current med schedule

After my doctor visit on 12/10, my meds changed a little. I stopped Rifabutin, and start Rifampin and Cefdinir. I also have to start drinking Skratch (instead of the Propel I was drinking) so I ordered that from Amazon and it should be here tomorrow. Here’s what it looks like currently:

As needed: Burbur detox, ½ dropper
Atemesinin: 3 weeks on, 1 week off
Daily: 2 Skratch electrolyte drinks

Morning
1 Cefdinir (300mg)
5 KingChlorella (5x200mg)
1 Smilax/Sarsparilla (1x450mg)
1 Coq10 (1x100mg)
2 Perque Adreno Suppress Guard
1 Alpha Lipoic Acid (1x300mg)
3 D3 (3x2000UI)
2 Omega3 fish oil (2x980mg)
1 Men’s Multivitamin
3 Folic Acid (3x80mcg = 2.4mg)
2 Artemesinin (2x200mg)
1 Methylated B12 (1x5000mcg)

Noon
1 Probiotic (Theralac)

Evening
1 Cefdinir (300mg)
1 Rifampin (300mg)
1 Zithromax (1x500mg)
5 KingChlorella (5x200mg)
1 Smilax/Sarsparilla (1x450mg)
2 Artemesinin (2x200mg)
1 Alpha Lipoic Acid (1x300mg)

Bed
1 Gabapentin (400mg)