Big flare-up after the most "normal" weeks I've had...

[wonko]

This isn't really a question, more of a status update.

I recently enjoyed some of my best consecutive weeks since I got sick years ago.  I was still symptomatic, but I had the stamina and mental clarity to get through a few big pushes at work.  It felt good to not feel on a daily basis that my illness was greatly impacting my abilities.  

Through all of this I have also been on a more aggressive round of antibiotics for the last couple of months, pulsing factive, tindamax, and zith.  

Anyway, after soaring through so much I did hit the wall and have been literally bed ridden for the past couple days.  It always amazes me that I can go in between such extremes in so little time!  I've been hurting all over, feeling both burning sensations in my skin as well as deep aching muscle pain and drilling pain in my bones.  I've been sleeping in short shifts and waking up feeling exhausted, with strong buzzing/tingling sensations all over my body.  My legs have been twitchy as well, along with a couple whole body jerks here and there.  My brain is "foggy" and I can't do anything requiring concentration.  I've had eye pain, visual disturbances, and uncomfortable cranial pressure.

I also have a huge breakout all over my back and chest of both small red dots and larger zit-like lesions.  I've had this breakout for a few weeks, since around when I changed abx, but it went into "overdrive" and is now very prominent.  At least it is in places mostly covered, even by summer clothes.

I think I'm starting to come out of this lull, which ain't shabby since it's only been a few days.  I know early in treatment, any Herx or flare would take me about a month to clear.  I'm hopefully I'll be back at work on Monday after missing 1/2 of Wed, all of Thurs and Fri.  I did some gentle exercise this AM as I felt very lethargic from being prone for two days straight.  I may even venture outside today, as I haven't left my house since Wednesday.

I do feel like I'm still making progress but it is certainly a physical and emotional challenge to endure these pitfalls.  I quickly start to doubt myself and become very critical of myself when this happens, as if I should have some how been able to prevent it.

I'm glad I have the weekend to try and ease back into the swing of life and hope I'll be back on track for next week.  Again, that's a super short recovery time compared to what I used to endure.  So while this event has been rough, at least I can note that in comparison I'm doing way better than a couple of years ago.

Hope everyone has a good weekend.
  

[Ness78]

Hi Wonko, your story always helps me a lot.  Thanks. Did I recall you saying that you only have a little bit of arthritic problems?

[wonko]

I noticed that you both asked about heat, so a few more ramblings from me:  (Lots of brain fog today...)

I certainly have experienced heat intolerance with my illness.  This first became a problem for me in early '08.  That's when I started to notice that if I took a hot shower, my paresthias (tingling sensations, etc) would enhance, and sometimes even spread to different places on my body.  I was undiagnosed then, and thus not getting treatment, and the heat intolerance got worse with time.

It got to the point where some days, if I got too hot (from any source, shower or environmental) I would become overwhelmingly fatigued and nauseous.  There were several occasions during this time when something as simple as getting too hot from being outdoors, or letting the shower get too hot for even moments (usually as a result of me wanting a nice hot shower to relax...) would render me bed ridden for the rest of the day.  Getting into a hot car in the summer was Not Fun!

So if my whole body got too warm, I was in a lot of discomfort, with extra tingling, buzzing, leg jerks, fatigue, etc.  But it was also the case that if just part of me was exposed to heat, that part would be affected.  Like washing my hand in hot water left them (extra) tingly for several minutes.  While cooking, steam to the face would enhance the tingling in my face.  

All of this was very concerning as heat intolerance is often associated with things like MS.  But I can speak from experience that I had a lot of trouble from this, and it was related to my infections.

Now, my heat intolerance is MUCH improved, as the recent heat waves have demonstrated.  It is a wonderful sign to me that this problem is mostly resolved.  Heat can't leave me bed-ridden anymore, and while it can still stir up my paresthesias, it does so to a lesser extent.

I'm not medically trained, but my "feeling" is that once the nerves get so irritated and jangled from Lyme/co, it can take a long time to recover.  In addition to my issues with heat, I also used to experience a lot of heightened sensitivity to light, smells, and sound, which as also improved.  I think that before my nervous system was very overwhelmed by the effects of the infections, but over time I'm slowly healing and returning to a more normal baseline.  Of course, when I Herx some of this stuff comes back, but it's still not as bad as it was before treatment.
  

[wonko]

Thanks everyone for attending my pity party!

I'm still on the mend, I think I initially underestimated the magnitude of this Herx/flare.

I've been off all abx for just about a week now, trying to give myself a bit of a break and some time to recover.

I had a phone consult with my LLMD this week and he thinks this was a Herx and wants me to stay off all abx just a bit longer, and then to move on to a different combination.  So no more tindamax and factive for now, instead next I'll be trying omnicef, and zith will remain in the mix.

I also recently had a big round of bloodwork and testing done, some of which was told to me over the phone but I have an in-person visit soon when I'll get all of the details.  From what I could glean over the phone, my recent Igenex western blot came back NEGATIVE, which is good news.  My c-reactive protein and SED rate, both inflammation markers, remain elevated but are on a downward trend.  I think a couple other things were slightly abnormal, but nothing serious and all closer to normal than in previous testing.

I also had a blood sugar test (don't know the name) that is supposed to reflect an average of the past three months, and thankfully that was in excellent range.  As I'm overweight, that is always a big relief; I really don't want to develop diabetes on top of everything else.

The results of my adrenal testing were qualitatively described to me, but I don't have the numbers.  Apparently my cortisol levels are not that bad in the AM, dip below normal at noon, but then are very high at midnight.  I'm not sure what that all means, but I'm sure it will be discussed more at my appt.  For now I'm still to take my small dose of cortisol during the day.

Overall it seems my labs support what I think/feel, which is that I'm getting better over time.  (My LLMD again reminded me that this is not a race.)  He thinks that I may be clear of Lyme itself, but still firmly believes that co-organisms are affecting my health, because I continue to have Bart-like symptoms and always Herx the most to Bart-targeting abx.

This past week I had to push through lots of fatigue and was guilty of putting on a "show" instead of actually being that productive.  Quite humbling to overall have so much of my life back on some days but to still be so susceptible to these events.

But yes, onward and upward!  Again, hope all are having a good, restful weekend.  

[Ness78]

I guess the bad part about feeling so good is its equal opposite.  I like what Binx67 said...'this too shall pass'.  Have you been on aggressive treatment from the beginning? I seem to recall you saying you were on moderate treatment...I could be wrong.

Also, does the heat effect you? My legs feel wonky when it's really hot.  I get the MS panic!  

Are you feeling any better?

[carrie235]

Hi Wonko,

I'm sorry to hear that you had not been feeling well.  It sure sounds like a herx to me and maybe that can be a good thing meaning you are killing a lot of the bugs...??

Take care and feel better soon!

Carrie

[illinwithoutacause]

i am sorry to read about this recent flare you are experiencing.  is there any correlation to the heat wave?

i hope you continue to improve and that you are back on your feet really soon.  i know this type of set back can be incredibly discouraging, but it seems like you have a good perspective on things.  the time it takes to bounce back is shorter and that is really significant.  this too shall pass and i have my fingers crossed that you have a multitude of good days coming your way very soon.

blessings to you,
binx

[ally123582]

I feel the exact same way right now.  I was having a period of doing well and this week, all of a sudden, I crashed.  I think it might have to do with stopping Flagyl, but I'm hoping to get on another antibiotic (in addition to the Omnicef) this week after I call my doc.  I'm trying to stay positive and think good days will be back soon, but it's hard to get through this just when you think it might be all over with.  Hope you have a better week at work!

[ree427]

I am sure you will be back to yourself soon. Keep up the positive attitude!

[JackieCalifornia]

Sorry to hear about the rough patch, but as you note, the good news is that you had a string of strong days, followed by a bad but not horrific backslide.  Overall, a dip in an upward trend.  YAY!!!