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drugged: multiple drugs

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drugged
16 hours ago, Rhiannon said:

 

All those tiny steps add up over time!

 

Thanks Rhiannon!  You've been an inspiration for me.  

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drugged

Started nitrofurantoin (Macrobid) 100 mg b.i.d. yesterday morning.  UTI specific symptoms are starting to ease but struggling with stomach upset, muscle pain ~7-8, malaise, etc.  Part side effects of the antibiotic, part effects of my immune system fighting the infection?  I took yesterday "off" from my routine, I think I'll take a second "sick" day today.  Maybe just a wee bit of yoga and some meditation.  

 

Interestingly, I didn't use any Mg/MSM butter yesterday since I wasn't doing much and I noticed my muscles felt tighter and a bit more achy.  Could be infection/antibiotic or could it be less Mg?  I'll have to experiment on myself after I'm done with the Macrobid.  It's kind of nice being able to decide for myself if I want to be a guinea pig as opposed to being an involuntary one for pharmaceutical companies and psychiatrists.  

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drugged

In December 2019 I finally got my diazepam prescription settled so I didn't have to worry about doing a rapid taper off of that so that one is covered.  Now, as of the first of the new year my insurance will only pay for one week of tramadol at a time.  I filled it the first week and was able to get a refill for the second week but I don't know if I can keep doing that indefinitely.  This is crazy.  I've been on the same dose of tramadol for seven years.  I've had times when I could take much less than prescribed and I've never needed to increase the dose to get the same level of pain relief.  This is chronic pain, it's not going away in a few days or weeks.  I do hope that it fades away once I'm off the AD(s) but that's a long time into the future.  Pregabalin didn't help with the pain and gave me intolerable side effects.  My body won't tolerate TCAs or SSRIs.  Acetaminophen doesn't relieve the muscle pain and I can't take NSAIDs.  Aaaaaaaarrgh!  I hate this uncertainty.

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drugged

Floxed?

 

I suffer from recurrent UTIs.  The first UTI I was just a year old.  Since my teens they've averaged between one to four every year.  Starting in the 2000's the go-to antibiotic was cipro, so for at least 10 - 15 years I took courses of cipro at least once a year.  I began to have problems with recurrent foot pain and then I developed chronic tendinitis in both elbows that wasn't due to any activity I was engaged in.  Now I have chronic pain and weakness in my upper body coupled with recurrent dysesthesias.  Seven years ago I was told I had fibromyalgia.  I suspect I've been floxed in addition to being polymedicated.  

 

I'm currently taking nitrofurantion for a bladder infection and I'm not tolerating it very well.  Muscle pain and malaise have been significantly worse.  I don't tolerate cephalosporins or sulfonamides, fluoroquinolones are out, now it looks like nitrofurantoin is also no go.  Amoxicillin apparently can cause many of the same problems as FQs.  I'm really at a loss as too what is (relatively) safe in term of antibiotics and I don't see any reduction of bladder infections in my future.  I also no longer trust doctors to know what pharmaceuticals are safe for me.  

 

 

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drugged

I'm looking for trustworthy sources of information about long term damage from fluoquinolones.  Are there any tests designed to identify mitochondrial damage or actual damage to tendons and other connective tissues?  

 

I probably need to be checked for an aortic aneurysm.  They run in my family (my mother died from an aortic aneurysm and a first cousin had a massive aneurysm repaired) and taking cipro is also a risk factor.  

 

I would appreciate being pointed toward reliable sources of information whether it websites or books.

Thanks

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Shep
2 hours ago, drugged said:

I'm looking for trustworthy sources of information about long term damage from fluoquinolones.  Are there any tests designed to identify mitochondrial damage or actual damage to tendons and other connective tissues?  

 

Here are some articles you may find helpful (and there are a lot more out there):

 

Hidden Dangers of Fluoroquinolone Antibiotics in the Benzodiazepine-Dependent Population

 

Floxie Hope.com - Fluoroquinolones links and resources

 

When antibiotics turn toxic

 

That last link has a discussion on mitochondrial damage, including: "One problem is that there is still no reliable biomarker that researchers can use to test for mitochondrial damage in people, tying cell-line research to clinical experience. Nor is it known precisely how the fluoroquinolones are damaging human cells."

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Rhiannon

It's no replacement for an antibiotic when you need one,  but a friend who gets frequent UTIs turned me on to D-mannose (as a dietary supplement, over the counter) and it's helped me get rid of a couple of UTIs before they got to the point where I needed antibiotics. You might already know about it, I just thought I'd mention it since I only learned about it a year or two ago.

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drugged
13 hours ago, Rhiannon said:

It's no replacement for an antibiotic when you need one,  but a friend who gets frequent UTIs turned me on to D-mannose (as a dietary supplement, over the counter) and it's helped me get rid of a couple of UTIs before they got to the point where I needed antibiotics. You might already know about it, I just thought I'd mention it since I only learned about it a year or two ago.

I think I've seen it mentioned but I don't know anything about it in terms of UTIs.  I'll read up about it though.  Thanks.

Actually, I was wondering which antibiotics would be safer for me to take should I have to go that route again.  Aside from probably being floxed, there is the issue of taking antibiotics while in AD withdrawal.  At this point, the only antibiotic I can think of that I haven't had an adverse reaction to is amoxicillin.  

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drugged

Thanks @Shep.  I'd read the Nature article but will check out the others.

 

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drugged

Slowly returning to WD normal after the UTI/antibiotic episode.  Not 100% but slowly, very slowly, moving in that direction.  Today I'm trying my mini-workout/walk routine that I was doing prior to the infection.  

 

Researching fluoroquinolone damage and what I might try to maybe ease the damage, I'm seeing that antioxidants and mineral supplements might be helpful especially coenzyme Q.  I'm debating between a cucurmin-piperine supplement and a CoQ10 supplement or both.  Working on improving my diet, too.  Also getting at a pre/probiotic supplement and going to start D-mannose for prophylaxis.  Any thoughts or advice will be appreciated.

 

Back when I was doing a lot of running and working out, I often wondered if I had defective or inefficient mitochondria in my muscle cells.  I can't remember now what exactly I was experiencing that made me think that.  After the pain bomb exploded I went to physical therapy and the PT asked me if I had been diagnosed with any connective tissue disorders.  I hadn't been so I didn't think much about it.  Being in constant physical pain I tend not to think about things as much as maybe I should.  If i was/am floxed and it seems likely then those things suddenly make sense.  How that fits in with tapering and withdrawal now I guess I'll find out.  

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drugged

January 23, 2020:  added D-mannose 500mg/day and and a probiotic.  Planning to add a tendon support supplement in a few days to see if that helps with the upper body pain and the elbow tendonosis.  I suspect some of the upper body pain and weakness is actual connective tissue damage from all the dozens of times I took cipro for infections. 

 

I used to make vegetable beef soup using a big knuckle bone with lots of cartilage and marrow and bean soup using smoked pork hocks.  Always use chicken leg quarters to make the broth for chicken soups.  The cartilage and marrow make for excellent tasting broth and, my theory at least, provide us with elements essential for connective tissue health.  I can't find the beef knuckle bones any longer - the trend unfortunately seems to be toward completely boneless supermarket meats, I may have to look elsewhere in the future.  

 

I'm gradually making other dietary changes, additions mostly; cherries (frozen), broccoli and brussel sprouts, more carrots, eggs, etc.  Having spent periods of time living with local families in southern Mexico I acquired a taste for Mexican papaya and discovered my GI tract is much happier when it's a regular part of my diet.  Finding it in Arizona was easy, not sure about here in Iowa but I'm going to look ...  

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drugged

Really struggling to get my mind around the idea that there may well be permanent damage to my connective tissues, mitochondria, and CNS due to repeated exposures to fluoroquinolone antibiotics in addition to all the problems linked to my drug cocktail.  Talk about donating your body to science.  I should get a golden parachute from the pharmaceutical industry.  

 

Aside from that I've been experiencing an increased need for sleep, sleeping 9 or more hours, falling asleep reading in the evening or when I meditate.  I haven't changed anything drug-wise except as noted above ( D-mannose and probiotic).  This extra fatigue has come on since having the UTI.  

 

After a few days off because of the infection, I'm getting back to light exercise.  I alternate days when I do a 30 minute strength and flexibility routine and walking.  Right now trying to do both on the same day is a stretch as I'm spending a bit more time cooking also.  The strength and flexibility days definitely generate more pain than the walking but not so much that I can't function.  

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Shep
20 hours ago, drugged said:

Really struggling to get my mind around the idea that there may well be permanent damage to my connective tissues, mitochondria, and CNS due to repeated exposures to fluoroquinolone antibiotics in addition to all the problems linked to my drug cocktail. 

 

We really don't know the full extent of the damage, but from what you're writing, especially about exercise, you're increasing the power of neuroplasticity to do as much healing as possible. 

 

The increased need for sleep may just be the body's way of forcing you to rest and let even more healing happen. 

 

The brain/body really is remarkable in the way it heals as much as possible, as long as we listen to our symptoms and learn from them. 

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drugged
23 hours ago, drugged said:

Aside from that I've been experiencing an increased need for sleep, sleeping 9 or more hours, falling asleep reading in the evening or when I meditate.  I haven't changed anything drug-wise except as noted above ( D-mannose and probiotic).  This extra fatigue has come on since having the UTI. 

Of course, as soon as I mention sleeping more I have a night of waking up several times and getting up at 2 am.  🙄

 

I think you're probably right Shep, about needing the extra sleep.  I have a bad habit of comparing the exercise I'm able to do now with what I could do before my body quit working so it doesn't seem like I've done enough to need extra sleep.  I suppose it's taking my body longer to recover from the infection and the GI upset the antibiotic caused also.  

 

Been going through the literature on possible mechanisms of damage from fluoroquinolones and, aside from the obvious damage to connective tissue, it sounds like they damage the mitochondria.  One paper mentioned using a supplement to support the mitochondria (essentially coenzyme Q) while patients were taking the antibiotics seemed to help (sorry don't remember the details) so that's one possible experiment.  Collagen supplements, might help, it's hard to say without trying them for several months.  Last but not least by any means, continuing to taper off the pysch drugs.  Healing is bound to be slow as long as I continue to ingest poisons.  

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Shep
22 hours ago, drugged said:

Last but not least by any means, continuing to taper off the pysch drugs.  Healing is bound to be slow as long as I continue to ingest poisons.  

 

I'm glad you're doing the research on this, but you may want to see how well you feel after a slow and careful taper, and then perhaps look into supplements such as coenzyme Q (and anything else you find of value). Unfortunately, withdrawal makes any experiment risky and unpredictable and you may find that you come out the other side of withdrawal feeling so much better, you aren't in the category of those who are harmed long term. 

 

Do you drink bone broth? That may be something that's gentle enough during withdrawal that could help. 

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drugged
25 minutes ago, Shep said:

Do you drink bone broth? That may be something that's gentle enough during withdrawal that could help.

Not exactly.  We eat a lot of homemade soups and I always use bone-in meats to make the broth for the soup, knuckle bones if I can find them.  The cartilage and marrow make the broth very rich and nourishing.  

 

I can see where the CoQ might be too activating but would a plain collagen peptide supplement be over-the-top?  Among other things I've noticed my skin and nails seem not as healthy, as if I'm lacking something in my diet.  

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Rhiannon
On 1/25/2020 at 6:46 AM, drugged said:

I used to make vegetable beef soup using a big knuckle bone with lots of cartilage and marrow and bean soup using smoked pork hocks.  Always use chicken leg quarters to make the broth for chicken soups.  The cartilage and marrow make for excellent tasting broth and, my theory at least, provide us with elements essential for connective tissue health.  I can't find the beef knuckle bones any longer - the trend unfortunately seems to be toward completely boneless supermarket meats, I may have to look elsewhere in the future.  

 

I'm gradually making other dietary changes, additions mostly; cherries (frozen), broccoli and brussel sprouts, more carrots, eggs, etc.  Having spent periods of time living with local families in southern Mexico I acquired a taste for Mexican papaya and discovered my GI tract is much happier when it's a regular part of my diet.  Finding it in Arizona was easy, not sure about here in Iowa but I'm going to look ...  

 

There may be a Mexican mercado somewhere in your area. We have several of them here, in an agricultural area that has historically depended heavily on migrant labor.  I'm not familiar with Iowa though. They might be more likely to have the bones and the papaya both. They're fun to visit anyway just to see all the new and different products and they generally have other produce that the mainstream-American stores don't have, too.

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drugged
18 hours ago, Rhiannon said:
On 1/25/2020 at 8:46 AM, drugged said:

 

 

There may be a Mexican mercado somewhere in your area. We have several of them here, in an agricultural area that has historically depended heavily on migrant labor.  I'm not familiar with Iowa though. They might be more likely to have the bones and the papaya both. They're fun to visit anyway just to see all the new and different products and they generally have other produce that the mainstream-American stores don't have, too

I haven't been able to find any mercados near where I'm living now but there were two supermercados near where we lived in Arizona and various carnicerías (butcher shops).  The regular supermarkets carried lots of Mexican products, too. Here in Iowa we have meat lockers that cater to folks who raise their own livestock and to hunters.  Most of them sell retail also.  They start with the whole animal so you can usually get any part you want.  

 

I'm looking forward to getting back to AZ and shopping at my favorite mercado.  Amazing variety of vegetables and fruits, spices, interesting medicinal herbs, and always inexpensive.  Tucson, just up the road, has every kind of ethnic market you can think of, every kind of ethnic restaurant, too.  We're heading back this summer so not too long to wait.  

 

 

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drugged

Just checking in.  I cut the venlafaxine by 7.5 mg a few days early because I'd just come to the end of the loose beads I had rather than open another capsule.  So far not noticing any major increase in WD symptoms, maybe a bit more irritability.  

 

After adding the D-mannose and the probiotic (which has prebiotics in it also) I had a week or so of GI bloating, fullness, and irregularity but that seems to be resolving now.

 

Added a collagen peptide supplement a week ago but only taking one-third of the recommended dose to be cautious - no fallout from that.  

 

I have a powdered Mg++ supplement that I can mix with the water I drink during the day - I take a Mg++ 250 mg supplement in the evening.  

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Rhiannon
On 1/31/2020 at 5:21 AM, drugged said:

I haven't been able to find any mercados near where I'm living now but there were two supermercados near where we lived in Arizona and various carnicerías (butcher shops).  The regular supermarkets carried lots of Mexican products, too. Here in Iowa we have meat lockers that cater to folks who raise their own livestock and to hunters.  Most of them sell retail also.  They start with the whole animal so you can usually get any part you want.  

 

I'm looking forward to getting back to AZ and shopping at my favorite mercado.  Amazing variety of vegetables and fruits, spices, interesting medicinal herbs, and always inexpensive.  Tucson, just up the road, has every kind of ethnic market you can think of, every kind of ethnic restaurant, too.  We're heading back this summer so not too long to wait.  

 

 

 

I've never been to Tucson but I've heard great things about it! The closest I got was when I lived in Silver City for a year before moving up here to the PNW.  Lots of people did their big-city shopping in Tucson, it was a couple of hours away.

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drugged

@Rhiannon - Silver City is gorgeous.  We considered living there.

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Rhiannon

Yes, it's a little jewel of a town. And the weather is great--four seasons, all of them pretty comfortable. Although I guess the summers are probably getting hotter now.

 

 

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drugged

The entire desert southwest is staying hot more of the year and getting drier.  Silver City is at a higher elevation though so it should still be pleasant.  

 

We lived about 20 miles south of Tucson at a slightly higher elevation, not enough to make a huge difference but it was nice being that close to a large metro area while not having to put up with the traffic and the noise from the air force base.  We were also close enough to Mexico that we could cross the border to get dental work done, too.  

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drugged

Just dropping in to say everything is pretty much the same.  I gave myself a birthday "gift" on the 12th of experimenting with cutting the trazodone.  I get 100mg tabs that I have to split so I had some smaller pieces.  Just guessing that they're 40mg.  So far no new or increased symptoms.  I'm thinking of holding the AD at 75mg and tapering completely off the trazodone then going back and finishing the AD taper.  We'll see how it goes.

 

Still working at getting some semi-regular exercise and eating healthier.  Some weeks are better than others.  I've been kind of down lately - that always makes it harder to be good to myself.  I'm expecting a bump in the road when we change to daylight "savings" time.  The 'spring ahead' always hits me hard.  Another thing to look forward to on returning to Arizona, no time changes.  

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Rhiannon
6 hours ago, drugged said:

Just dropping in to say everything is pretty much the same.  I gave myself a birthday "gift" on the 12th of experimenting with cutting the trazodone.  I get 100mg tabs that I have to split so I had some smaller pieces.  Just guessing that they're 40mg.  So far no new or increased symptoms.  I'm thinking of holding the AD at 75mg and tapering completely off the trazodone then going back and finishing the AD taper.  We'll see how it goes.

 

Still working at getting some semi-regular exercise and eating healthier.  Some weeks are better than others.  I've been kind of down lately - that always makes it harder to be good to myself.  I'm expecting a bump in the road when we change to daylight "savings" time.  The 'spring ahead' always hits me hard.  Another thing to look forward to on returning to Arizona, no time changes.  

 

I sure wish we would just get rid of the whole Daylight Savings thing in the whole country. I don't know one person who thinks it's anything but a hassle. Seems like something we could get bipartisan agreement on even in this  dysfunctional family of a country.

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JackieDecides
4 hours ago, Rhiannon said:

I sure wish we would just get rid of the whole Daylight Savings thing in the whole country. I don't know one person who thinks it's anything but a hassle. Seems like something we could get bipartisan agreement on even in this  dysfunctional family of a country.

wow, is this true. NOBODY likes it, why do we still have it?! 

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drugged
11 hours ago, JackieDecides said:

wow, is this true. NOBODY likes it, why do we still have it?! 

Nobody likes changing back and forth but I think there's some disagreement on whether to go to DST all year or to do away with it.  Being a morning person I wish we would do away with it.  After living almost 20 years in a state that doesn't have it I had forgotten how incredibly disruptive it is to the body's biorhythms.   

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drugged

Just realized this morning that when I pick up a book I was reading before bed the night before I'm able to remember what was happening when I put the book down.  It's been a long time since I could say that.  

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