Fourth Month of Treatment - Feeling Very Fatigued, Brain Fog, Moody, Achy

[Hope75]

Has anyone had crushing fatigue?  I am having that now and for the past two weeks.  I feel terrible, even though I go to bed and get about 6-7hrs sleep (with the help of Pamelor and Nortryptiline).  My joints ache, my elbow hurts and I have tinnitus again.  I have had a 1.5 week long allergy attack that made me miss work for one day.  I now feel like I am slipping back into fatigue, which I believe I had about 1.5-2.0 years ago.  I remember my legs feeling heavy and I feel like I've just gotten up from maybe 2hrs of sleep.

I don't know if this is herxing.  My new regimen is Mepron, Doxy, Sulfameth/Trimethoprom, Flagyl and Artmisinin.  The pulsing schedule is to take all the meds on M, W, F and Flagyl on Th, F for two weeks, then off two weeks, then on etc.  My first round/2wks of this regimen didn't make me feel this way, I don't think?  I need to keep better journals:(  
I feel very much on the edge of sleep, and that doesn't help at my job.  If I were to lay down, I probably coudln't sleep anyway.  Ugh, just a yucky week for me.  

[Hope75]

PS....I agree it's probably some herxing.  I thought this regimen was doing nothing - turns out I'm wrong.  Thanks for the input guys, it's very appreciated.  

FightBackHarder - I've been there, feeling alone, but you are very welcome here and will not be alone here - I assure you!

[Hope75]

I am on those meds M, W, F and for 2 weeks on, 2 weeks off.  I am getting labs once a month for liver function etc.  I am on alot of antibiotics, but not every day and off for two week stretches.  

I have to run, but I hope that was a quick answer to those questions:)

[Jena906]

my dr titrated me from doxy for 3 months. To adding ceftin for another 4 months. Then stopped the doxy, stayed on ceftin, did high dose tindamax for three days, and stopped ceftin 2 weeks later. DONE

I think the bugs are too.  now trying to figure out the healing part.  Getting my body back to where it was before lyme.

[JackieCalifornia]

Um, what probiotics are you taking?  Acidophilus?

[FightBackHarder]

I am the same exact way.. copies copies copies!! From the last 4 months I've compiled everything into a binder just to keep everything organized.  

I think my LLMD wants frequent tests because right now I'm on doxycycline, zithromax, tindamax, and cholestyramine for rx's and b-6, magnesium complex, MSM, liposomal glutathione, primrose oil, and the omegas for supplements.  Not to metion all the probiotics as well, which I know don't affect my organs in a negative way.

But is this not a lot compared to others going thru this?! I don't have anyone I can relate to besides everyone on here so I really have no idea what I'm up against here.  

[JackieCalifornia]

Labs report to the MD, not to the patient.  Which is why I always get copies of ALL lab results from the MD at my next appointment.  I have copies of things my MD can't seem to find in my file.  :(  

I like your MD for getting monthly tests for your liver and kidney functions.

[FightBackHarder]

I have to get my blood drawn for liver and kidney function once a month for the next 6 months while on all the medications my LLMD has me on right now.  I've taken one, but I never heard results back. Is that something they would call me about, or just send the doctor?

[JackieCalifornia]

Wonko mentions getting regular blood tests done to monitor any problems developing from treatment.

I wonder and worry about that issue too.  My LLMD wants blood drawn a month before my every-three-months appointments, which seems like a very long time to me between tests with no one watching what's going on.

How often do others get their blood drawn to monitor treatment reactions?  Just curious.

[wonko]

My fatigue was (and can still be) disabling.  It is distinct from ordinary tiredness, and like you say it does not make it easy to sleep, just makes it hard to be up and productive.

Even as I started to make overall improvement, my fatigue persisted and I think it was even worse after many months of treatment than it was early on.

I agree with the above that you are on a big load of medications.  I've topped out at 3 at a time, not counting anti-fungals and anti-inflammatories.  Are you taking anything like milk thistle to help with liver function, and are you getting regular blood work?  

Have you taken any breaks from treatment lately?  Though I think it's often necessary to push through, once in awhile I have benefited from pausing treatment to give my body a chance to recoup from the strain of so many meds and their aftermath.

Hang in there, hopefully this stir in symptoms is a sign that you're getting closer to the bottom of this all.

[FightBackHarder]

omgosh thank you for catching that!! its 4 WEEKS.

[JackieCalifornia]

Did you mean to say Lyme gestation is every 4 weeks,  or 4 months?  I know it's loooong, but 4 months seems overly so.

[FightBackHarder]

it most likely is herxing. when i saw my llmd last in feb she told me that after months i could still be herxing the bugs outta my system which is why sometimes i felt i was actually going backwards in progress.  lymes gestation period is every 4 months and sure enough every month for about 1-1.5 weeks i feel as horrible as i did when i first started.  ive noticed this about 3 months in a row now so when i start to feel extra tired and can barely get outta bed, severe arthritic pain, constants headahces, nausea, etc. i kno its because the lymes is trying to reproduce and the meds are now having to kill more bugs so i just tell myself this is not all for nothing. i push thru those horrendous weeks and sure enough it starts to ease up as more bugs get outta your system.

[JackieCalifornia]

Hope, it sounds like it might be a Herx.  That's a huge load of medications you are on.  The most I ever took was two at once:

-- Mepron/atovaquone and Zithromax/azithromycin to treat babesiosis; then

-- Biaxin/clarithromycin and Omnicef/cefdinir for Lyme; then

-- Zithromax/azithromycin and Flagyl/metronidazole for Lyme (I had a reaction to Biaxin and Omnicef and was switched to this)

My LLMD doesn't pulse meds, tho, so it's a totally different approach...he does 'scorched earth' approach.

However, it sounds like you're Herxing.  What does your MD say?  Can he let you start slower and work up?