Here we go again...

[wonko]

I know it is part of healing, but it's not fun!

I have been doing really well lately, accomplishing much more at work, traveling (for work), pulling many long days and even an all-nighter for a deadline.  Stuff that even just a couple of weeks ago would seem impossible.  I'm almost four months into treatment (I think April 10th marks that point), and I thought maybe I was mostly done with this?

I had an LLMD appt. earlier this week.  They are thrilled with my progress, but still concerned by my residual symptoms.  We reviewed how my biggest reaction was to Bactrim, one of the 3 antibiotics  that I take.  They told me to double the dose, and that we'll consider adding/changing medications at my next visit in 2 months.

At first I didn't notice anything from the change in dose, but I just woke up and feel awful!  Drilling eye pain, stomach/abdominal pain, horrible stiffness, head "on fire," face and patches on legs tingling, and lots of my other usual suspects that have been relatively quiet lately.

Getting relief from symptoms, though a wonderful thing, makes it challenging to handle their reappearance.  I think both the body and mind try to very quickly forget the discomfort.  I'm sure this is not the sickest I've felt, but since I haven't felt this sick in several weeks, it seems particularly nasty.

When I first read about Herx reactions, I thought it sounded like science fiction.  And I guess I still underestimate this illness, I thought I was beyond this level.

At least it is the weekend (I work M-F), hopefully I can stay relatively comfortable until this settles down.

Well, this is more of a pity party than a question post.  I know it's the sort of thing I just need to get through and that there's no magic  fix.  I am lucky, my Herxes are usually <1 day.

[wonko]

Thanks everyone for listening and for sharing ways of looking at the situation.

Definitely the contrast of how much better I was feeling even just a few days ago with the Herx is part of why I felt hit pretty hard.  My LLMD told me in the beginning it'd take about a year to get well, but I keep expecting some huge shortcut and to be through the worst of it.  And of course, during the good times, it is only natural to try and dive head first back into life.  I know I can't catch up on how far behind I am, I've simply lost too much time.  But making any progress while I am in a position to do so helps my self-esteem.

Since I do have such obvious reactions to the treatment, it does help me believe that it is working.  And returning to a semi-normal state for a couple of weeks helps me believe that the "old me" is still in there underneath the illness.  I'm very lucky to have both the affirmation that I'm on the right track and that I'm able to recover.

I'm better today, but still knocked down.  I'm concerned about the work week, but will take it as it comes and do what I can.

[gorbybelle]

'wandering around in the darkness' - 'in limbo' - yes, that's what makes this illness worse - I think bad flares and/or Herx - can bring those feelings back - I feel most of us will agree 'anxiety' is one of the hardest things to conquer - take that out of the equation - and everything has a different perspective - sometimes letting go a little achieves a lot.

[SOONERMOM]

Unfortunately, those of us that have been "fighting" lyme for a while can completely relate to what you are saying.  I have often said that I wouldn't believe these stories if all this wouldn't have happened to me too.

It's a bummer to feel like you are almost better, almost normal again...and then get slammed back to reality.  It is scary to no longer be in control of your health.  The first really bad herx that I had terrified me.  I was SURE I was having a relapse, low grade fever even.

I realize that this disease is also a mental fight.  You have to keep on getting back up and struggling to regain what has been lost.  Some days it is just easier to deal with than others.

I am only working part time and WAS looking for a full time job a few months back..HAHA  pretty funny to me now.  That would have been a disaster.

I know there are people that have conquered this disease, and I intend to be one of them.  I am grateful to have  this forum to *vent* on in the meantime!

You are young and will probably get to that "promised land" before me!  I guess we can both at least say that we have had positive responses to abx and feel that we are on the right track. We aren't still stuck in some limbo-land hades, wandering around in the darkness, waiting for our next MRI & LP.......etc.

*Hang in There*

[JackieCalifornia]

Yeah, I did the same thing: when I was on meds and feeling better, I tried desperately to catch up on all the things I had not finished at work.  Sometimes it's the only way.  (Oddly enough, I feel lousy until about noon, moderately lousy till 3 pm, then great until midnight, and sometimes pull an all-nighter just because I can.  The bugs mess with my body clock.)

I also found that when I had been feeling really good and then had a Herx, it was particularly distressing, because (1) I was afraid I was going downhill again, (2) the contrast between feeling good and getting a Herx is a lot worse than feeling generally awful and getting a Herx.  And of course, Herxes specialize in producing anxiety.

D**n bugs.

My latest little bit of happiness:  lemon sherbet (sorbet to gorbybelle!).  Go figure.

[patsy10]

I have had years to get accustomed to these feelings (and it still bothers me a lot) but I can say at the beginning I was extremely anxious for a long time.  What you described was exactly how it was for me.  It was very frightening and anxiety producing.

[wonko]

I understand that my brush with normalcy, wonderful though brief, may sound like the trigger, and I don't doubt that it could be contributing.  But my big deadline was met Wed, and I continued to feel fine until I woke up in the middle of last night, hours after taking the higher dose of Bactrim.  The feeling and symptoms that were lit up were the same as when I first starting Bactrim, too.  It had been just long enough since I'd felt this lousy for it to really hit me hard, and the fallout is that I've been an unhappy camper both emotionally and physically.

I agree with gorbybelle that the anxiety of not knowing how long a Herx or flare it will last feeds into my emotions.  Earlier in my illness, I had an acute one month attack, followed by a near 100% remission.  When my second attack came on, I kept thinking it would stop, but it didn't.  Instead I gradually got sicker until finally getting a diagnosis and treatment.  

[gorbybelle]

what patsy10 said 'getting through the bad times because they do pass'  I guess at the start of this - the first flare - 'we' don't know that the intensity of pain etc; will pass - that's the reason for huge amount of anxiety - which I guess feeds the 'flare' ?

-just thinking out loud.

[patsy10]

Your work schedule is probably not helping matters but like me and others you probably have no choice.

I felt kind of like you regarding the herx being science fiction until it happened to me.  It's scary but I try to keep remembering that it means the medications are working.

I guess what gets me through the bad times is knowing it will pass.....

[gorbybelle]

pulling long days and all nighters !!  doesn' sound like a good idea to me.  I know when body feels 'normalish' it's like there is no reason to waste time pacing yourself - sounds like you are 'running' rather than 'walking faster' !

I realise the 'Herx' factor in how you are feeling is probably the culprit for symptoms reoccuring at present BUT you know better than many 'stressing your body' - not good.

I hope you manage a relaxed weekend and are feeling better very soon.

Big Hug from englisher!