How many experience dizziness?

[skarey]

Oh my!  The last week or so had been horrible! I'm not doing well at all!  I started my new meds last Sunday... and by Monday Evening I was having horrible muscle/joint pain, and the worst headache EVER.    Was thinking maybe a herx, but realized a day later it was the flu.  Was running low grade fever, achy, cough, and etc...  Well I stopped my abx, cause I didn't want to herx and have the flu... don't think I could handle it.  Well it's now Saturday and I'm feeling better flu wise, but I am SOOO stinkin dizzy and off balance and brain fog.    It's really starting to take it's toll on me and I'm finding it's making me depressed.  I can't function...  I dread getting up each morning cause the dizziness.  It's only bad when I'm moving... I feel like my brain is swishy.  I can't get anything done, and I feel overwhelmed.  I'm also really weak.... my legs shake when I go up or down the stairs and I feel I have NO energy.  I've had this before when I first got sick, and it's nerve wracking.  

I am totally at wits end right now, and am feeling extremely down because of it.    

Do you other lymies feel the horrible dizziness, weakness, and brain fog?   It worries me SO much.

Please any advice or suggestions are greatly needed.

Thanks.

[patsy10]

I'm not convinced your worsening isn't still from having the flu.

I have not had dizziness.  I have had ataxia though.

[skarey]

Tindamax...my LLMD originally prescribed this, but unfortunately it wasn't available through the base pharmacy (I'm getting my meds from the military clinic cause they are free).  So he prescribed Flagyl as an alternative.  I took flagyl about a week before I became symptomatic again (about 8 months ago) and had a weird reaction... anxiety, flushing, and just plain yucky feeling.  I quit taking it and a few days later my lyme symptoms were at full force.  I seriously wonder if it broke up some of those cysts and caused my lyme to become active again.

I'll give it a try... but if I can't tolerate it I'll just get the Tindamax from my LLMD office.

[wonko]

Since I recently started tindamax, I've been reading some about it's comparison with flagyl, as they are both supposed "cyst busters."  The general consensus I've read on the "big" Lyme site is that Tindamax is more tolerable than Flagyl.  If you have trouble with the Flagyl, you may want to ask your LLMD about Tindamax as an alternative.

I'm on my 6th day of Tindamax and I am definitely Herxing, but it's so far bearable, as I'm still able to work, etc.  My pain level is unfortunately higher, but I am eager to blast these bugs and willing to accept the discomfort for now.

Glad my comment about weakness made sense.  It's hard to explain how weak we can feel when it's not observable on exam.

[skarey]

I also don't think I have "true" weakness.  I always pass this easily on neuro exams.  It just feels like my body is SO fatigued and shaky.

[skarey]

Thank you Wonko.  I am wondering if having the flu did cause my symptoms to worsen.  However I've been having this horrible dizziness forever!  Luckily, it doesn't really haunt me while sitting still or driving.  Just when I'm walking or moving about.  Feel like I'm going to tip over or loose my balance.  

I had only took two doese of Azithromycin, and Amox and haven't started back up yet.  Will do so tomorrow.  I'm to take these two 4 days and then pulse in Flagyl the last 3 days of the week.  I'm nervous about the flagyl.  I've heard many mixed reviews with this abx.  I was taking Ceftin for 3 months and haven't been on anything for 2 weeks.  I think not being on anything may also be why I've had an increase in symptoms.  While on the Ceftin I didn't think I was making improvements, but now looking back I think I was feeling a bit better.  I was functioning better.  Hopefully this new line up will knock this **** down.  Don't know how much more I can handle.

Thanks for the help.

[wonko]

I'm sorry you are going through all of this.  Sounds like the flu might have set you back a ways, but I'm glad that you're getting over at least the flu part of your woes.

I can certainly related to feeling overwhelmed by disabling symptoms and slow positive response to treatment.  Depression comes with the territory, and I also found myself becoming extremely irritable.  I felt such a total lack of control that I'd get very upset over minor things like someone putting a dish back in the wrong cabinet.

Dizziness was never a primary symptom for me, though I had my share.  I'd drift while walking and often bump the walls, etc.  But while sitting, I didn't get it so it was livable.  I never had true weakness.  I was heavily fatigued and sometimes unable to get out of bed due to that, but I didn't actually lose the ability to move at all.  It just felt like it, if that makes sense.  I was definitely disabled by brain fog.  I never stopped working, just reduced to part time (and used a LOT of sick leave!).  I was hugely embarrassed professionally by how my thinking was affected by Lyme.

At times I doubted treatment would ever really work, but then what option did I have?  While my Lyme diagnosis may be controversial (I was never CDC positive), it's all I have, and clearly I was having some reaction to meds, even if it was mostly negative!

This fall I've been doing much, much better.  It was probably in part giving treatment enough time (it was about the 8 month mark when I turned this corner) and also trying different meds (I'd gone through 6 or so by that time?).  I am still symptomatic.  I still Herx and have days where I'm achy, foggy, and unhappy.  But I'm also getting back to my life.  I even recently resumed full time work status and have begun to apply for new positions (my position will expire in about a year).

Treatment is extremely challenging both physically and emotionally.  I know how the Herx's can cause you to think that it's all pointless, and I certainly got worse before  I bot better.  But I am getting better, and that is something I seriously doubt would happen were it not for my ongoing abx treatment.

Some meds are tougher than others, and I think a lot of that has to do with the individual.  But a change in the line up always causes me some grief.  I think you posted recently that you're on some new abx?  Right now, I'm on mino and zith, and also alternating factive and tindamax (which I just started this week and is stirring up some trouble).  So in addition to your flu, you may need to be patient while you adjust to your new regimen.  Hang in there!