Medication Induced Setback Support

[[Ho...]]

I'm in month 7 of a setback and still fighting every day, Muddlefoot. How are you doing?

 

I know that you were struggling quite a bit. Any improvement?

[[So...]]

Hey muddlefoot ,

 

Im in th same boat you are on . Was healed for about one year and got a huge setback after a antibiotic course . Obsessive intrusive thoughts , high anxiety , nerve issues , fear , dr dp , etc at their peak ... Feeling so low ...how are you now ?

[[wa...]]

Every time I think I might be getting somewhere, I get bad again. Tonight is a bad one.

 

On a side note I quit smoking cigarettes 5 weeks ago. That has compounded things and has added another layer withdrawal symptoms of its own.

 

How are you muddle? And everyone else?

[[wa...]]

Hey muddlefoot ,

 

Im in th same boat you are on . Was healed for about one year and got a huge setback after a antibiotic course . Obsessive intrusive thoughts , high anxiety , nerve issues , fear , dr dp , etc at their peak ... Feeling so low ...how are you now ?

 

Sorry to hear that. Unfortunately it’s not uncommon for antibiotics to do that. When you were healed for a year could you tolerate other medicines or other things that affect the cns? Did you still have sensitivities? Did the symptoms develop while taking the antibiotics or after?

[[So...]]

Hi waiting12 ,

 

I did not take any medicine (except few antacids and paraveatamol) for a year , first time  I did a course and I got hit badly . Stress can exite cns and that may be also a case , but i got hit after first dose of the antibiotic . How are you now ?

[[wa...]]

Hi waiting12 ,

 

I did not take any medicine (except few antacids and paraveatamol) for a year , first time  I did a course and I got hit badly . Stress can exite cns and that may be also a case , but i got hit after first dose of the antibiotic . How are you now ?

 

First dose did me in as well. How many doses did you end up taking?

[[Kl...]]

Hello:  Following

 

I'v been looking for information about the acute stage as this is where I am and I can understand why people in this stage aren't joyfully popping on the computer to report their stories. Ironicially, I  Found more needed information as I have been AB'd twice in 7 years leading to debilitating symptoms   I see I have so many things in common with you all like the wisdom tooth Buddie. 

 

I commend you all for your fortitude and positive spirits.  I'm dealing with my situation alone so I'll be following and when I can, I will try to give back support.

 

I wish you all long enjoyable windows.

 

Klonkar

[[Mu...]]

Hey guys.

It's been 6 months now, and while there have been small improvements, I am still pretty much dealing with akathisia, muscle and cognitive issues, fatigue, weakness, food sensitivities, anxiety and depression, etc daily to some degree. 😭😭😭 The stress intolerance at this point is absolutely ridiculous as well and triggers my symptoms like crazy. I am very tired.

[[Kl...]]

Hello Buddies.

 

I'm in acute after a progressively slower taper.  Just wanted to post some postitive stuff.  I'm 28 days out!!

 

I didn't expect to have any windows at this stage since i'm old as dirt, a 17 year C 2 mg a day user, been acutely AB'd twice, and have been mostly couch bound for

months.

 

But, two days after I tapered off I actually had a  pretty good half day window and actually went for a walk.  Then the tuff times hit and I've been laid up since.  Four days ago I was able to go meet relatives and go for a short walk with them, visit my daughter in a local wine tasting room and actually laugh and talk a little. Then

the next day was the worst day in months which I actually expected. Two more days of the worst pain I have had in 5 months.  Again expected.

 

Yesterday my symptoms just changed.  Don't need to say what they were but they changed.  My worst symptom was a 2 instead of  a 10 and I felt symptoms like

"air starvation" that I had no  idea what Buddies were talking  My attitude was better but the thought of food was repulsive.  New Sxs.

 

Today I am still 70% better.  Actually went to work at my apartment and cut off some limbs of a mulberry bush turned tree.  Felt great to be outside and work.

 

A buddy reminded me to try  heat on my stiff muscles in my head and neck and that sparked a thought about hydrotherapy.  I've used this with showers  and hot  and

cold packs forever so I thought I'd share.  I think this is one thing I do that stimulates my healing and improves my overall mental healing....without drugs or herbs. 

 

https://www.naturaltherapypages.com.au/article/hydrotherapy

 

You can decide if its right for you.

 

Great to  be on here again and wishing you all prayers and positive thoughts.

 

Klonkar

 

 

 

[[wa...]]

Hey guys.

It's been 6 months now, and while there have been small improvements, I am still pretty much dealing with akathisia, muscle and cognitive issues, fatigue, weakness, food sensitivities, anxiety and depression, etc daily to some degree. 😭😭😭 The stress intolerance at this point is absolutely ridiculous as well and triggers my symptoms like crazy. I am very tired.

 

Hang in there girl. It’s really good you’ve seen improvements! You’re on the up and up. I can fully relate. I’ve had horrendous muscle stuff come out of nowhere a couple months ago as well. Every thing else too. I’ve also seen slow improvements, but have been in a worse than normal  wave for weeks. God I’m so sick of this! Every time I think I’m finally getting somewhere it’s right back to suffering... still no full windows. What foods are you having sensitivities to?

[[Kl...]]

Dear Waiting:

 

I hope you can report this contraindication with the benzo and amoxicillin to the FDA.  It's a hassle but we have to get the word out.

 

I hope relief comes to you soon.

 

Klonkar

[[Lu...]]

Hi there everyone, l am still here after 5months from taking the AB and steroids, l have been having windows the last one lasted a week just gone back into a wave the windows are good but l just wish the waves would stop.Wishing you all a speedy recovery Love Kat

 

Hi, just wondering for how long did you take the steroids? Because 10 days of steroids, caused me a terrible set back, now 3 months since then, my main symptoms still here, severe insomnia and anxiety is the worst, and didn't have it until the steroids (use to sleep 8 hours even 3 months after I jumped) what were your symptoms?

[[wa...]]

Dear Waiting:

 

I hope you can report this contraindication with the benzo and amoxicillin to the FDA.  It's a hassle but we have to get the word out.

 

I hope relief comes to you soon.

 

Klonkar

 

Hi, thanks. I was cold turkeyed off of an ssri in 2015 which set me up for severe adverse reactions to ssris later on in 2016 with akathisia + other severe  symptoms. I was 20 months into recovery from that when I had the awful  amoxicillin reaction. I am more of a severe kindling case. I don’t know how or where to report that. My cns has been fried. Any time I take a medicine I end up in a worse and longer hell than before. Limited Benzo use but Ativan did make my situation worse at the end of 2016. Not sure what drug to report because I’ve had like 10 of these akathisia + 100 symptoms reactions (amoxicillin floxing being the worst)— just hoping and waiting to recover. Do I report them all? Or is this just all because of ssri cold turkey withdrawal?

 

Hope you feel better soon too!

[[Kl...]]

Hi Waiting.  Thanks for your explanation.  I'm hoping you can share your experience re the amoxicillin reaction that might be associated with SSRI or clonazepam/benzo use. It sounds like you have paid more than your dues for taking these meds.  I am so sorry that you have experienced these awful symptoms. You are not alone.

 

I will pull up a link tomorrow because its late now and you can,  if you have the energy. tell your story.  You definitely have a story I'm sure the FDA, insurance companies, pharmaceutical companies and doctors should hear. 

 

God bless and take care.  I'll pray for your recovery and that one day you'll get some answers as to why this is happening to you.

 

Klonkar

[[Kl...]]

 

Here is a link to report the severe symptoms experienced when taking a benzo and an antibiotic together. 

 

https://www.fda.gov/media/85598/download

 

Thanks for getting the word out.

 

Klonkar

[[Ka...]]

Hi Guy's,l haven’t been on here in awhile, for some reason it triggered me,well l would like to be telling you all that l am much better because l know l am ahead of some of you, l am now nearly 11 months since my setback and haven’t had any woods just easing of symptoms, they started to get easier on a regular basis but sadly l got worse last week with the fear and anxiety and the most awful head pressure. I have heard on here that setbacks last for about a year and l am nearly there but l am afraid to hope but saying that my last setback lasted a year and ended quite quickly.Love to Waiting, muddlefoot and southern star please let me know how you are doing Love Katxxx

[[Ti...]]

Hi all,

 

Can I join this group please as antibiotics (amoxicillin) for what I now think was a fake uti, have me begging for mercy in such a horrific setback. It’s been 6 months nearly. I cannot believe this can happen. Not that I was ok before, but was functioning to a degree. It’s caused so much added suffering, akathisia,  the muscles stuff is horrific, panic and fear like never before, so much. I just cry and sob. It helps to find others, but so horrible for you.

[[Kl...]]

I can only respond to my episode of amoxicicillin use while taking 2 mg clonazepam daily for several years.  Many of the severe symptoms

went away within a few months leaving balance issues and some of the same issues I have experienced again in the last few months of withdrawal and through the days post jumping off the C.  I feel like most of my symptoms did not resolve because i continued taking the C for years not knowing I was actually in tolerance withdrawal mode.  The headache, a skin rash and other symptoms hung on but I was able to

play a lot  of tennis, work physically on my rentals, maintain a relationship and generally carry on with life.  The lingering symptoms were

definitely annoying and perplexing.

 

On the up side, it's been 45 days since I jumped and have had 3 days in a row where I was able to go for short walks.  One day recently

I did a big grocery shop, went for a pedicure and then went to see the Avengers.  This was a huge day for me and while I certainly didn't feel

100%, I'll graciously take 75%. 

 

I am definitely holding on to the fact that my brain is an amazing organ and it holds all of the knowledge to repair itself.  Acceptance of

the symptoms today and hope for better days in the future are mantras that have worked before.  I know I will get better and better.

 

God be with you all and prayers for your continued healing.

 

Klonkar

[[Ti...]]

Can it really get better after amoxicillin? My whole cns and brain is fried. It’s done something awful and I’m not coping. It’s agony 😭

[[wa...]]

Can it really get better after amoxicillin? My whole cns and brain is fried. It’s done something awful and I’m not coping. It’s agony 😭

 

You and me both, TH. I’ve been super bad lately. I still can’t wrap my head around amoxicillin doing this when I’ve taken it so many times before. Worst thing I’ve been through. I hear it absolutely gets better and goes away though.

[[Kl...]]

Amoxicillin should be listed right next to fluorquinoline drugs.  It is surely the drug from hell. 

 

I did get progressively better but it took a long time.  I don't know if I would be completely healed if I had quit taking

the Klonopin I was on at the time. 

 

I guess I will find out.  It's been 2 months since I rolled off the K.  I've had the toughest day I've ever had and that

followed by the best day I've ever had.  The fact that I felt somewhat normal on a single part day is really encouraging to me. 

 

I have only to be positive and will pray for all of my friends with these debilitating side effects.

 

Hugs and love,

 

k

[[Ti...]]

Can it really get better after amoxicillin? My whole cns and brain is fried. It’s done something awful and I’m not coping. It’s agony 😭

 

You and me both, TH. I’ve been super bad lately. I still can’t wrap my head around amoxicillin doing this when I’ve taken it so many times before. Worst thing I’ve been through. I hear it absolutely gets better and goes away though.

 

 

 

I’m so so sorry this happened to you too, like isn’t this hard enough. I hope and pray it’s gors away for us soon. Unbelievable. I hadn’t taken an antibiotic for years and years prior to this and never had an issue.  The sensitivity is awful. Thanks for replying, never in my life have I battled such hell. 🤗

[Guest [so...]]

Hell doesn't adequately describe the horror of an AB setback. I had mine from a penicillin at 9 months off and it took me until 16 months to get over it,  then i seemed to improve quite quickly and at 18 months felt 90% healed however,  I'm back in another setback from deciding to leave my husband, i think these ABs seriously reinjure our cns and I'm terrified of ever needing another one, I'm sure my cns will be fragile for life due to these evil poisons.

[[Kl...]]

To all you friends that have been AB'd before:  I was ab'd twice in the last 7 years of long term K use.  I have been couch bound for months, getting up for essentials

of life. 

 

Today and yesterday I had to push myself but got out the door and have worked scrubbing an apartment for four hours each day and today climbed a 20 foot extension ladder and washed windows.  Set the ladder as well.  Well this might not seem like much of an accomplishment but it's the first time since I rolled off the K and for 6 months I've been able to work.  I'm 69 and female and I just want to give you hope.  I am not 100% or maybe not even 75% but I am healing.  I wish it didn't take so much time.

 

I've kept a log of how I've felt every day since Christmas and it's incredible how we I can't  remember pain but I haven't kept that log for anyone but myself.

I'm hoping you all are having decreasing symptoms, too.

 

God bless and cheers to bright shiny windows.

[[at...]]

Hi all, 

 

Wanted to share my experience with doxycycline.  Two weeks ago I completed an 8-day course of doxy.  Things started to go bad at day 2.  I had to complete the course as I had bloody cough and nasal discharge from a severe case of sinusitis/URTI.  So here I am in agony from a acute symptoms again.

 

I was healing nicely from a massive setback from steroids (one shot, took me almost a year to get windows).  As soon as the first windows appeared, I had to take the doxy. And I am in hell again.  I have odd few hours where I feel OK, only to be slammed shortly after.

 

Like everyone else, this is taking everything I have, especially my sanity.

 

(Hi Waiting12, I am Survivor1 from that other place)

 

The sad thing is that I can't seem to get stable enough to ever taper the last drug I am on - Trazodone.

 

Aargh!