Still enduring a major increase in symptoms

[wonko]

A couple of weeks ago I posted about a significant Herx/flare-up that can on after some of my best weeks since becoming ill and also after a few weeks pulsing factive, tindamax, and zith.

There were a few time when I thought I was coming out of this stupor, but unfortunately I'm still in the midst of it and not functioning well.  My LLMD, with whom I had a phone consult, suggested I stop all abx for a bit.  I tried this, and after a full week off of everything I was feeling even worse.  Then one morning I woke up and my face was super bright red across my forehead, cheeks, and nose.  It stayed that way all day, with folks asking if I had a sunburn.  It scared me, as I thought it could be a sign of bacterial activity, so I decided to resume abx.

I've been back on abx for about 4-5 days now, and the last few days I've experienced excruciatingly heavy fatigue.  I wake up feeling more tired than when I went to bed and feeling weighted down.  My limbs feel very unnaturally heavy, it is disturbing.  I also have plenty of paresthesias and burning muscle pain, and have a lot of vivid, violent dreams.

I just want to get back to where I was a month ago!  It is emotionally very taxing to have my returned abilities taken away again so suddenly.  I'm also coming up on a lot of professional obligations and I'm concerned about not being able to perform adequately to meet them.  

I'm going to pause the abx again and hope that this time my symptoms clear up and that I can find my baseline again...Until then, it looks like the pity party is yet again at my place!

[wonko]

Thanks all for the supportive remarks.  Going between improved back to worthless in such short time really scares me.  It causes those creeping concerns of "ok, what else do I have or what else might be contributing to my illness?" to come up, and that makes me feel helpless.  I know that I've been testing for everything under the sun, and my LLMD regularly orders very complete blood work to monitor my health, but I still always feel like there is more to this all, or that perhaps I have developed secondary vague issues of autoimmunity.  I'll probably never know.

As happy as I am during my good stretches, it's devastating to me when I get sick and I start to question how realistic my career/life goals are.  There's one thing to be said for ambition, but I worry sometimes that I'm kidding myself.  We hear over and over that stress is bad for chronic illness, and I'm not sure I'm well enough to handle the situations in which I place myself.  I feel like the continued incident of these flares are dark clouds on the horizon, and while I usually ignore them I do at time question my own judgement!

Hope all have a good weekend.

[wonko]

This is actually my second time on tindamax.  First time was in Dec. '09 (about 1 year into treatment) and it knocked me down really hard then.  This second time was rough, but light in comparison.  I assume you're asking because of the recent buzz surrounding Sapi's research?  I'm not sure what to think about that since so far there have been no animal studies, it's all just in the dish.  Plus, my latest igenex western blot shows NO LYME, so at this point whatever I'm dealing with is most likely bart/BLO.

It's hard to pin point which symptoms were stirred up by the tindamax.  Basically, my systemic inflammation spiked so all of my symptoms were worse.  Fatigue and brain fog are the most disabling for me, since those are what prevent me from being able to do my job.

[illinwithoutacause]

i am so sorry this is happening to you, wonko.  it's so cruel, especially since you were feeling, dare i say, *well* just a few weeks back.  i have my fingers and toes crossed that you get back to baseline very, very soon.

please keep us posted.
xoxox
binx

[Ness78]

I am sorry to hear you are feeling so crappy.  It *****.  The rollercoaster of getting a diagnosis for a brain disease is continued with the ups and downs of the treatment process.  Keep on keeping on.  Imagine a day where you turn a corner and stay there.  I am cheering for you. :)

[ewford]

How's the Tindamax coming along?   How long have you been using it?