Author Topic: Developed POIS after antibiotic use  (Read 87542 times)

Simon66

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Re: Developed POIS after antibiotic use
« Reply #340 on: January 29, 2021, 12:27:45 AM »
Hi Huser,

I'm no longer going to reply on this thread as it's really long but yeah it's possibly some kind of pathogen that gets triggered by the fluoroquinolone class of antibiotics.

I'm still not recovered 3 years after the Ciprofloxacin, I've learnt to change my diet and that minimises my symptoms. I'm now very intolerant to strange things like sea salt and coffee so I have to be careful what I eat.

My Cipro issues are located in very specific areas of my body, like only one leg has some burning sensation, one ear has tinnitus, one hand has lost some of the fat padding. My working theory is maybe it's a systemic candida infection, I'm still looking for a cure.
Disclaimer: Please research all supplements thoroughly and take them at your own risk. I am not responsible for any adverse reaction you may suffer.

Avoid all Fluoroquinolone antibiotics including Ciprofloxacin, Levaquin and Avelox.

Huser

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Re: Developed POIS after antibiotic use
« Reply #341 on: January 29, 2021, 01:29:41 PM »
If it helps I had painfull body for 5 years after eating Ciprofloxacin. So you are close to the finish :) And excersice helps! I've got job where I had to walk 10km per day and all symptomes desapered for 4 years. I was healty like never before. I cold have sex with no problems (every thirth day). I thought everything is behind me after my wife and I wanted to have a baby. I exgerated a little bit to much with the sex and everything came back. I have demaged my nerve system like Ciprofloxacin demaged it 11 years ago. Now I am on the same trip as you are, but I know I will get back on the track someday. I just jave to wait and excersice a lot.

Bacterias have nothing to do with your pain, belive me! I also thought so, but that is not true. Ciprofloxacin damages your nerves. You can read that on the paper you get with medications. It says PERIPHERAL NEUROPHATY. Nerves need blud to heal! And they get lot of blud with excercise! Try and you will see. And stop ejaculating this year  :)

Iwillbeatthis

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Re: Developed POIS after antibiotic use
« Reply #342 on: January 29, 2021, 03:08:56 PM »
I dodged a bullet a few years ago, my Gp prescribed me cipro for suspected prostate infection but luckily I researched it before I tried and saw the horror stories about it, so I never took it. Otherwise I think I would be in a much worse position with my health. It also made me doubt any future medication treatments the drs suggested.

Simon66

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Re: Developed POIS after antibiotic use
« Reply #343 on: February 24, 2021, 04:12:46 PM »
Have any of you guys used Alpha Lipoic Acid?

I took some Natrol 600mg (standard version, not the time release). About 4 days after the first dosage, I had crippling sinus headaches, fatigue and low mood. Luckily, I have learnt that 3 large glasses of orange juice greatly decreases the reaction.

Whatever Alpha Lipoic Acid does, I've never had a supplement stimulate my Chronic Fatigue symptoms like that.

so...

My latest working theory: Severe mitochondrial dysfunction (worsened by Ciprofloxacin), body producing extremely highly levels of mitochondrial antioxidants to cope with high oxidative stress. Orange Juice (containing vitamin C antioxidant) helps decrease oxidative stress.

Reasoning: Alpha Lipoic Acid is related to mitochondria. I also found I have extremely high levels of another mitochondrial antioxidant called Superoxide Dismutase. After taking the Ciprofloxacin, my body is unable to handle calcium supplements. Mitochondria are involved in calcium signalling.

I've heard from various sources that mitochondrial dysfunction can be treated by somehow rebuilding the fatty membrane around the mitochondria. I already tried some Bodybio Phosphatidylcholine which possibly made me worse. I'm looking at other options including some simple Soy Lecithin.

I'm not going to be spamming this thread with updates, just thought this was significant enough to share. I was really, really hoping not to have mitochondrial issues but the evidence is pointing in that direction.


If it helps I had painfull body for 5 years after eating Ciprofloxacin. So you are close to the finish :) And excersice helps! I've got job where I had to walk 10km per day and all symptomes desapered for 4 years. I was healty like never before. I cold have sex with no problems (every thirth day). I thought everything is behind me after my wife and I wanted to have a baby. I exgerated a little bit to much with the sex and everything came back. I have demaged my nerve system like Ciprofloxacin demaged it 11 years ago. Now I am on the same trip as you are, but I know I will get back on the track someday. I just jave to wait and excersice a lot.

Bacterias have nothing to do with your pain, belive me! I also thought so, but that is not true. Ciprofloxacin damages your nerves. You can read that on the paper you get with medications. It says PERIPHERAL NEUROPHATY. Nerves need blud to heal! And they get lot of blud with excercise! Try and you will see. And stop ejaculating this year  :)

@Huser A year ago, I did try pushing my body with cycling and unfortunately I got severe kidney pain on several occasions which could be a sign of Rhabdomyolysis. I don't really have many nerve issues but I understand the myelin sheath is much like the membranes surrounding mitochondria and oxidative stress can damage both. As I mentioned above, I will look for a source of fat that will rebuild possible damaged mitochondria and nerves, then hopefully I will be able to exercise without suffering further damage.
Disclaimer: Please research all supplements thoroughly and take them at your own risk. I am not responsible for any adverse reaction you may suffer.

Avoid all Fluoroquinolone antibiotics including Ciprofloxacin, Levaquin and Avelox.

Iwillbeatthis

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Re: Developed POIS after antibiotic use
« Reply #344 on: February 24, 2021, 05:24:39 PM »
Have any of you guys used Alpha Lipoic Acid?

I took some Natrol 600mg (standard version, not the time release). About 4 days after the first dosage, I had crippling sinus headaches, fatigue and low mood. Luckily, I have learnt that 3 large glasses of orange juice greatly decreases the reaction.

Whatever Alpha Lipoic Acid does, I've never had a supplement stimulate my Chronic Fatigue symptoms like that.

so...

My latest working theory: Severe mitochondrial dysfunction (worsened by Ciprofloxacin), body producing extremely highly levels of mitochondrial antioxidants to cope with high oxidative stress. Orange Juice (containing vitamin C antioxidant) helps decrease oxidative stress.

Reasoning: Alpha Lipoic Acid is related to mitochondria. I also found I have extremely high levels of another mitochondrial antioxidant called Superoxide Dismutase. After taking the Ciprofloxacin, my body is unable to handle calcium supplements. Mitochondria are involved in calcium signalling.

I've heard from various sources that mitochondrial dysfunction can be treated by somehow rebuilding the fatty membrane around the mitochondria. I already tried some Bodybio Phosphatidylcholine which possibly made me worse. I'm looking at other options including some simple Soy Lecithin.

I'm not going to be spamming this thread with updates, just thought this was significant enough to share. I was really, really hoping not to have mitochondrial issues but the evidence is pointing in that direction.


If it helps I had painfull body for 5 years after eating Ciprofloxacin. So you are close to the finish :) And excersice helps! I've got job where I had to walk 10km per day and all symptomes desapered for 4 years. I was healty like never before. I cold have sex with no problems (every thirth day). I thought everything is behind me after my wife and I wanted to have a baby. I exgerated a little bit to much with the sex and everything came back. I have demaged my nerve system like Ciprofloxacin demaged it 11 years ago. Now I am on the same trip as you are, but I know I will get back on the track someday. I just jave to wait and excersice a lot.

Bacterias have nothing to do with your pain, belive me! I also thought so, but that is not true. Ciprofloxacin damages your nerves. You can read that on the paper you get with medications. It says PERIPHERAL NEUROPHATY. Nerves need blud to heal! And they get lot of blud with excercise! Try and you will see. And stop ejaculating this year  :)

@Huser A year ago, I did try pushing my body with cycling and unfortunately I got severe kidney pain on several occasions which could be a sign of Rhabdomyolysis. I don't really have many nerve issues but I understand the myelin sheath is much like the membranes surrounding mitochondria and oxidative stress can damage both. As I mentioned above, I will look for a source of fat that will rebuild possible damaged mitochondria and nerves, then hopefully I will be able to exercise without suffering further damage.


Try sulforaphane it gets rid of oxidative stress very well for me, I have many problematic genes for super oxide so I also believe I have high levels as well. Sulforaphane turns on the NFR2 gene that combats oxidative stress. It's the only antioxidant that has strong evidence behind it in clinical studies for being beneficial to health. Make sure you have wasabi with it as it activates the sulforaphane.

When I wake up sometimes feeling brain dead with a very painful feeling in the sides of my head with brainfog and extreme autistic symptoms, sulforaphane is the only thing that gets rid of it, so it must be bad oxidative stess. And this kind of brain fog is very different to the  usual POIS neurological burning type of brainfog, the POIS one feels less severe in comparison.

Alpha Lipoic Acid didn't help me either.

Simon66

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Re: Developed POIS after antibiotic use
« Reply #345 on: February 24, 2021, 07:20:43 PM »

Try sulforaphane it gets rid of oxidative stress very well for me, I have many problematic genes for super oxide so I also believe I have high levels as well. Sulforaphane turns on the NFR2 gene that combats oxidative stress. It's the only antioxidant that has strong evidence behind it in clinical studies for being beneficial to health. Make sure you have wasabi with it as it activates the sulforaphane.

When I wake up sometimes feeling brain dead with a very painful feeling in the sides of my head with brainfog and extreme autistic symptoms, sulforaphane is the only thing that gets rid of it, so it must be bad oxidative stess. And this kind of brain fog is very different to the  usual POIS neurological burning type of brainfog, the POIS one feels less severe in comparison.

Alpha Lipoic Acid didn't help me either.

Thanks very much for the response, which product are you taking?

Coincidentally, I first read about sulforaphane only a couple of days ago because I was looking at investing in a company called Evgen Pharma who claim to have the patent for the only pure, synthetic form. It seems to have some anti-cancer properties.
Disclaimer: Please research all supplements thoroughly and take them at your own risk. I am not responsible for any adverse reaction you may suffer.

Avoid all Fluoroquinolone antibiotics including Ciprofloxacin, Levaquin and Avelox.

Iwillbeatthis

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Re: Developed POIS after antibiotic use
« Reply #346 on: February 24, 2021, 08:09:02 PM »

Thanks very much for the response, which product are you taking?


Well I tried two brands first I used https://ebay.us/ve9HK5 this is really cheap brand and it worked well. Then I read that most sulforaphane supplements contain little or no sulforaphane so I bought this expensive one called Prostaphane which has been used in clinical studies and has been confirmed to have sulforaphane inside. And I saw no difference with the expensive one infact I felt it was weaker than the cheap one. So I've ordered more of the cheap one 360 capsules for £20

A safe way to make sure sulforaphane is activated is to add wasabi. This is what I read in an article:

"I was re-reading old research and noted one researcher advocating putting Wasabi on your broccoli – the spicier the better apparently. Wasabi is Japanese horseradish and is widely available.  If it comes on a large bottle is likely fake wasabi - yes like they fake saffron, they fake wasabi.

Is it crazy to add wasabi to your broccoli capsules?

Look at what is in the expensive Avmacol supplement that they only sell in North America.

In the research they found that adding just 0.25% Daikon to frozen broccoli “brought it back to life” and sulforaphane was found in the person eating it.

If you are using gelatine capsules with broccoli powder you can open them and, using a pointed knife, add a small amount of wasabi, re-seal and then swallow.  There is no taste or smell of wasabi."

Simon66

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Re: Developed POIS after antibiotic use
« Reply #347 on: February 24, 2021, 09:38:57 PM »
Thanks, really helpful.

I was looking at supplements and surprised that one capsule only seems to have 1000mcg (1 milligram) of the sulforaphane ingredient. I wonder if eating the vegetables would be better.

Unfortunately, I seem to react very badly to eating Broccoli and Cauliflower since the Cipro, maybe it is the sulforaphane. As a first step, I'm going to eat brussel sprouts over the next few days and see what happens, I've been avoiding green vegetables due to the uptick in symptoms I experienced previously.

Will keep the wasabi and the supplements in mind, definitely a new avenue for me to investigate.

With regards to the Alpha Lipoic Acid, I get a very severe headache/fatigue syndrome if I take 600-1200mg per day. I possibly get some very good days after stopping but the discomfort while dosing is unbearable so I am reluctant to retry high dosages. My kidneys also ache while taking supplements, they are perhaps damaged from the Cipro.

I've found some posts on another forum that may point towards the need to decrease the dosage and detox slowly over several years:
https://forums.phoenixrising.me/threads/my-journey-to-heal-from-cfs-diary.57813/page-4#post-994059
https://forums.phoenixrising.me/threads/my-experiences-with-alpha-lipoic-acid-benefits-and-side-effects.5533/#post-118794

Would be interesting if my problems are from ineffective detoxification due to low Alpha Lipoic Acid production.
Disclaimer: Please research all supplements thoroughly and take them at your own risk. I am not responsible for any adverse reaction you may suffer.

Avoid all Fluoroquinolone antibiotics including Ciprofloxacin, Levaquin and Avelox.

Iwillbeatthis

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Re: Developed POIS after antibiotic use
« Reply #348 on: February 25, 2021, 03:48:00 AM »
Thanks, really helpful.

I was looking at supplements and surprised that one capsule only seems to have 1000mcg (1 milligram) of the sulforaphane ingredient. I wonder if eating the vegetables would be better.

Unfortunately, I seem to react very badly to eating Broccoli and Cauliflower since the Cipro, maybe it is the sulforaphane. As a first step, I'm going to eat brussel sprouts over the next few days and see what happens, I've been avoiding green vegetables due to the uptick in symptoms I experienced previously.

Will keep the wasabi and the supplements in mind, definitely a new avenue for me to investigate.

With regards to the Alpha Lipoic Acid, I get a very severe headache/fatigue syndrome if I take 600-1200mg per day. I possibly get some very good days after stopping but the discomfort while dosing is unbearable so I am reluctant to retry high dosages. My kidneys also ache while taking supplements, they are perhaps damaged from the Cipro.

I've found some posts on another forum that may point towards the need to decrease the dosage and detox slowly over several years:
https://forums.phoenixrising.me/threads/my-journey-to-heal-from-cfs-diary.57813/page-4#post-994059
https://forums.phoenixrising.me/threads/my-experiences-with-alpha-lipoic-acid-benefits-and-side-effects.5533/#post-118794

Would be interesting if my problems are from ineffective detoxification due to low Alpha Lipoic Acid production.

Yeah I also react very bad to broccoli if I eat for dinner they I wake up with oxidative stress brain dead feeling in the morning so I haven't eaten it for a year or two. The sulforaphane doesn't give me this reaction though I'm not sure why maybe there's something else in the broccoli I was reacting to.

BoneBroth

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Re: Developed POIS after antibiotic use
« Reply #349 on: February 25, 2021, 08:20:50 AM »
Both me and my dad experience gas when eating broccoli.

Huser

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Re: Developed POIS after antibiotic use
« Reply #350 on: February 27, 2021, 04:39:28 PM »
Hi Simon,

cycling is very bad excercise. It makes my symptomes even worse as sex. When cycling you are squizing body and all the nerves. Its worse as sitting.

Walking is the best excercise. Hiking in nature. Body is active and brain is resting!

BoneBroth

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Re: Developed POIS after antibiotic use
« Reply #351 on: February 28, 2021, 04:03:09 AM »
Cycling might also expose your testicles to pressure which might reduce testosterone production.
« Last Edit: March 17, 2021, 02:46:48 PM by BoneBroth »

Simon66

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Re: Developed POIS after antibiotic use
« Reply #352 on: March 23, 2021, 04:56:51 PM »
Been taking two different probiotics called L. Plantarum 299V (Jarrow IBS or Sanprobi IBS) and BioGaia Protectis drops. Also been taking some Allicin Max (called Allimax/Allimed in the US) which is a special garlic anti-microbial/anti-fungal.

Yesterday, I had pain in my left testicle, the motor nerve in my left arm and today I have pain in my brain and right knee. My mood today has been extremely good with low anxiety, this is very rare.

Every time an episode like this happens, my immediate feeling is that I've temporarily dislodged a very nasty pathogen from the tissues where it resides. The episode only lasts a few days and then I'll usually see some kind of rash appear on my skin.

I'm going to make it my life's work to figure out a regimen to fight this thing, the three supplements above are a good starting point. If anyone's done any research on the microbiome, you'll know that gut bacteria control the immune system. Pharma companies are now trialling gut bacteria to fight cancer and neurodegenerative disorders. I wonder if the lack of diversity in my microbiome is the cause of these lingering infections.

Drinking milk and orange juice daily may also play some part in overall health.
« Last Edit: March 23, 2021, 05:03:47 PM by Simon66 »
Disclaimer: Please research all supplements thoroughly and take them at your own risk. I am not responsible for any adverse reaction you may suffer.

Avoid all Fluoroquinolone antibiotics including Ciprofloxacin, Levaquin and Avelox.

Muon

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Re: Developed POIS after antibiotic use
« Reply #353 on: April 21, 2021, 07:54:52 AM »
I wonder if the lack of diversity in my microbiome is the cause of these lingering infections inflammation.

Smoldering Inflammation in Cardio-Immune-Metabolic Disorders


Simon66

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Re: Developed POIS after antibiotic use
« Reply #354 on: April 22, 2021, 09:05:00 PM »
I have a feeling that a lot of inflammation comes from a damaged mucosal lining of the gut.

Most of the immune system is in the lining of the gut where it needs to kill pathogens from our food. Without a strong mucosal lining, I imagine the immune system goes haywire.

I've had a flare of my issues recently and did not improve from taking probiotics, colostrum or Allicin. I'm currently focusing on rebuilding my gut mucosa, I think Lecithin could be the supplement needed so I've ordered some soy lecithin softgels which I tolerate well. For those allergic to soy, there is also sunflower lecithin.
Disclaimer: Please research all supplements thoroughly and take them at your own risk. I am not responsible for any adverse reaction you may suffer.

Avoid all Fluoroquinolone antibiotics including Ciprofloxacin, Levaquin and Avelox.

BoneBroth

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Re: Developed POIS after antibiotic use
« Reply #355 on: April 23, 2021, 02:34:05 AM »
Yes, all therapists I have visited has independantly concluded that my intestines are inflamed, has bacteria overgrowth and slow movements. I belive this is caused by the inflammation caused by POIS worsened by a comprimised liver function. When the liver is weak it does not produce enough bile which is essential for keeping bad bacterias and fungus away from the gut. Lecitin is one of the main ingredient in bile. I will now look into if there is a hepatitis involved, which I got indications of.

Simon66

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Re: Developed POIS after antibiotic use
« Reply #356 on: April 23, 2021, 08:48:24 PM »
Yes, all therapists I have visited has independantly concluded that my intestines are inflamed, has bacteria overgrowth and slow movements. I belive this is caused by the inflammation caused by POIS worsened by a comprimised liver function. When the liver is weak it does not produce enough bile which is essential for keeping bad bacterias and fungus away from the gut. Lecitin is one of the main ingredient in bile. I will now look into if there is a hepatitis involved, which I got indications of.

Thanks, very useful information.

I once took Milk Thistle powder for liver health so I will go back and retest it along with the lecithin.

I'm also going to be exploring some other leaky gut supplements like Marshmallow Root and Slippery Elm.
Disclaimer: Please research all supplements thoroughly and take them at your own risk. I am not responsible for any adverse reaction you may suffer.

Avoid all Fluoroquinolone antibiotics including Ciprofloxacin, Levaquin and Avelox.

BoneBroth

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Re: Developed POIS after antibiotic use
« Reply #357 on: April 24, 2021, 03:54:06 AM »
After I did a liver detox with milk tistle and two other herbs that I dont recall, my acne suddenly disapeared from my face. That made me think that the liver is involved. Probably many organs are involved but that helped the liver.

Muon

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Re: Developed POIS after antibiotic use
« Reply #358 on: May 04, 2021, 02:54:20 PM »
I'm no longer going to reply on this thread as it's really long but yeah it's possibly some kind of pathogen that gets triggered by the fluoroquinolone class of antibiotics.

I'm still not recovered 3 years after the Ciprofloxacin, I've learnt to change my diet and that minimises my symptoms. I'm now very intolerant to strange things like sea salt and coffee so I have to be careful what I eat.

My Cipro issues are located in very specific areas of my body, like only one leg has some burning sensation, one ear has tinnitus, one hand has lost some of the fat padding. My working theory is maybe it's a systemic candida infection, I'm still looking for a cure.

Unlocking the Non-IgE-Mediated Pseudo-Allergic Reaction Puzzle with Mas-Related G-Protein Coupled Receptor Member X2 (MRGPRX2)

Fluoroquinolone Antibiotics
"Fluoroquinolone antibiotics, such as ciprofloxacin, moxifloxacin, and norfloxacin, are commonly used broad-spectrum antibiotics [143,145]. In a recent case report, the authors reported an MRGPRX2-linked hypersensitivity reaction from a topical fluoroquinolone ophthalmic preparation [110]. Evidence has been reported on fluoroquinolone-induced MC activation via MRGPRX2 [72,111]. Ciprofloxacin increased MC degranulation and MRGPRX2-dependent Ca2+ release in a concentration-dependent manner [72]. Moreover, ex vivo stimulation of wild-type and MRGPRB2 mutant mice has demonstrated an MRGPRB2-dependent MC activation [72]. Contrary to this finding, one researcher found no activity of ciprofloxacin in an MRGPRX2-expressing stable cell line Ca2+ release assay up to a 100 ?M concentration [87]. Possible reasons may be the differences in the ciprofloxacin concentration used, application type, or study design. In another study, several fluoroquinolone antibiotics were tested for MRGPRX2 activation potential via in vitro and in vivo mouse models [111]. Fluoroquinolone antibiotics have shown a concentration-dependent MC degranulation, Ca2+ release and increased vascular permeability through an MRGPRX2-dependent mechanism [111]."

Simon66

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Re: Developed POIS after antibiotic use
« Reply #359 on: July 06, 2021, 02:58:27 AM »
I recently found that having frequent O (once daily) caused me to develop very severe flu symptoms. Several weeks later and the severe symptoms return every time I have an O. I know it's a flu virus because other members of my family got it but we all tested negative for Covid.

There's definitely an immune component to this illness. My working theory is still that this is a gut microbiome disorder at its core. There is a lot of scientific research showing the effects of gut bacteria on the immune system.

When I abstain from having an O, the flu symptoms resolve after a day or two. I guess I will abstain for a couple weeks and hope my body can fight off this virus, the symptoms are very severe.

Edit: I also just remembered that my sex drive has been non-existent since I got this flu virus. I probably should have listened to my body and abstained if there is no desire.
« Last Edit: July 06, 2021, 03:09:14 AM by Simon66 »
Disclaimer: Please research all supplements thoroughly and take them at your own risk. I am not responsible for any adverse reaction you may suffer.

Avoid all Fluoroquinolone antibiotics including Ciprofloxacin, Levaquin and Avelox.