Redefining Lyme: Updates

It's Been a While

Tue, 09 Sep 2008 14:09:54 -0500

I haven't updated this blog for a while, so I thought I would write a short update on how I've been and what I've been up to.

I've had a few ups and downs, but on the whole I've been doing okay. I still have serious anxiety issues, and I still get fatigue and headaches from time to time, but only rarely these days am I restricted to my bed for more than a day or two, at a time. I have been exercising fairly regularly. Although I'm still not able to do a full workout, I'm happy with my progress.

I continue to run The Lyme Enigma and post, albeit minimally, at LymeNet Europe and am slowly working towards some kind of normalcy in my life. I think I'm well on my way.

A More Rational Approach to Morgellons

Thu, 10 Jul 2008 16:38:39 -0500

You saw it here first (sorry, members only): A More Rational Approach to Morgellons

About a Month off Cat's Claw

Tue, 24 Jun 2008 23:39:47 -0500

I didn't document the actual date I stopped, but I estimate that I have been off of the cat's claw for somewhere around a month. I am still unsure as to whether this experiment will prove a step in the right or the wrong direction as, very strangely, some symptoms have reappeared ... while others have waned or altogether disappeared.

My period started yesterday, and for the first time in several months I wasn't crushed with depression beforehand. I also have yet to get the pounding, life-stopping headache that comes every month or two, nor have I experienced the frozen neck. My nausea had greatly reduced, although it has notably reared its ugly head since PMS. (Hormones?) I am still able to exercise for more than a half hour without putting myself in bed for days at a time, although I am still only able to work out once or twice a week without "overdoing it."

On the flip side, the lymph node behind my left ear is swelling up again, although only at about half the size it used to. I am getting more spots than usual, although none of them are turning into rings or at all resembling "bull's eyes." I am regularly getting the "migraine aura" in my right eye, and I still am getting bouts of fatigue/pain ... although those bouts have been balanced out by a higher ratio of "good days," especially if I am well rested. My mind feels less sharp, unfortunately, but I am still sleeping. I noticed light night sweats the night before last; I have since worn my "hot flash pajamas" to bed, so I do not know if they recurred.

On some days the joint pain is better than usual, and on some days it is worse. I continue to get swelling in my knees. I am not currently experiencing any notable nerve pain, and my period is behaving amazingly "normal."

So, what does any of this mean? Wish I knew.... More soon.

The Last Week or So

Sat, 14 Jun 2008 13:53:06 -0500

I have been crushed down with fatigue. I stopped taking the cat's claw, for experimental reasons, and I'm really feeling it: waking up feeling like I need another full eight hours of sleep, heavy body, stiff, achy neck and back, foggy head, lots of migrating joint pains....

But I'm still not sure what I'm currently experiencing is "chronic Lyme" or "post-Lyme." I thought a closer look at the symptoms the cat's claw was keeping at bat might offer more insight into this, but I'm still honestly at a total loss.

We'll see what a difference another week or two makes....

So, it's been a while....

Wed, 04 Jun 2008 00:49:25 -0500

Where to begin? Lymeland has been taking up a lot of my time as of late ... products to debunk ... lies to expose. Luckily, I'm not alone in my position, and I think we've done a lot of good work as of late.

I am still sliding along this plateau I've been on for so many months now. No better; no worse, besides the increased gastro-paresis. My symptoms still cycle. I still have my bad weeks and I still have my decent weeks. Just the same, I am not well ... although I do believe this is about as good as it's going to get.

The motherboard on Keri's computer went out, hence the continued hiatus of "Odd Balls." Our apologies. Hopefully we will get another episode up sometime within this next century. I'll be sure to keep you posted, as I know you all have been holding your breath.... ;-)

Until next time....

Good and Bad

Mon, 21 Apr 2008 14:42:21 -0500

I have been doing well, at least compared to how I was feeling at the end of last month. I had a bad fatigue day yesterday, but I am quite certain that is because I did way too much housework the day before. Other than that, my only huge complaint is some joint pain (primarily my right wrist and my left shoulder, both pretty bad) and jaw pain (TMJ on the left, trigeminal neuralgia on the right ... wanna talk about PAIN?!), but it's that time of the month, it seems, when the "migrating pains" do their thing. I didn't sleep last night, either (just too physically uncomfortable), so I am also in quite the foul mood today....

Still no new Odd Balls episodes ... I'm hoping that will change this week. Keri and I are both massive flakes, if you haven't already figured that out. Hey, I'm a post-treatment Lymie and she's bi-polar ... we deserve a little slack, I think. ;-)

Doing Okay ... but Paying a High Price for It....

Sat, 05 Apr 2008 14:06:05 -0500

After a long bout of fatigue and all sorts of head stuff, I'm finally past the aftermath of that horrible vomiting episode I had. It really threw me for a loop. I had not been that sick in a long time.

I went about a two-week span in which I basically did not leave the house, invite anyone over, or talk to anyone on the phone. I blew off all of my friends and family, basically too tired, miserable, and moody to talk to anyone. It seems I pissed off a few people in the process.

To said people: please understand that I was in no shape to be talking to anyone, and my distance was not in any way personal. I actually went a little rabid for a few days, when I was at wit's end, and I hope you will believe me when I say you did not want to bear witness to any of that. I appreciate your respecting my wishes ... now, please do not add to my burden by punishing me for dealing with my pain and frustration in the best way I knew how....

It might be a while before there is another Odd Balls posted.... :-(

One Hell of a Month

Sun, 30 Mar 2008 15:37:40 -0500

Well, whatever flare I have been going through seemed to hit its peak a couple of days ago, although I am still pretty much stuck in bed. I got another stiff neck earlier this week, and then by Wednesday I was fighting severe nausea. I was able to keep the vomiting at bay until Thursday, at which time I also began to experience painful spasms throughout my abdomen. What I am pretty sure happened was the nerves in my stomach shut down Wednesday and my stomach didn't empty, causing a toxic soup to putrefy in my stomach. The muscles across the center of my abdomen were unresponsive, as if nonexistent, and cramping severely. It was really strange.

By about 4 am Friday morning, I couldn't take the pain any longer and had Hubby take me to the ER. I hate going to doctors, and I can't stand the ER, but I was at wit's end. I even eventually gave in to an injection of some kind of painkiller ... and anyone who knows me knows my intense aversion to painkillers. Given what I can potentially go through in any given month, it is important to me that I keep my pain tolerance up as high as possible. I had been going on days of breakthrough pain, however, and I just couldn't take it anymore.

What has me slightly concerned now is the fact that the doctor told me that my white blood count was well over 20,000 (normal is between 4000 and 10,000). There could be any number of causes to this. The doctor said excessive vomiting can cause high WBC's, but I looked it up and I could only find connections between vomiting and high red blood cell counts. I know I was severely dehydrated, as even after two bags of iv fluids I still couldn't wear my wedding band ... so maybe the doctor simply meant to say RBC when he said WBC. He was obviously confused on some level, as he said the cell counts are generally lower for women than men, and that also occurs in red, not white blood cell counts. I'm planning on following up with my general practitioner, so I guess we'll see if there is any real cause for concern soon enough.

For now, I feel like I'm drunk, even though I'm perfectly sober ... and my body feels heavy and sluggish when I get up and walk around. Relapse? Maybe. Autoimmune? Just as possible. Because I ran out of cat's claw? Always a possibility....

I'm just too tired to care right now.

Insomnia

Wed, 19 Mar 2008 14:16:39 -0500

I haven't slept well for the past two nights. I don't think I got more than an hour or two, if that. I haven't had more than one insomniac night for months ... this is the pits. My mind is not in a very good place right now. I'm very tired....

I ran out of cat's claw a couple of days ago ... maybe there's a connection? God, please don't let it be a relapse this soon....

Quick Update

Mon, 17 Mar 2008 17:22:14 -0500

I had a rough PMS, with a heavy bout of fatigue, but luckily I seemed to perk up after a few good doses of iron (via some added red meat to the diet), so I'm trying not to think too much of it. What does concern me, however, is the fact that I did have a few debilitating days of brain fog, which I had not experienced for months. I'm doing okay today, though. I'm still fatigued, but I'm not in bed and I'm thinking clearly enough....