Floxed

[Cheffo]

I am a long time follower of John Sarno, Steve Ozanich, etc. and a firm believer in TMS. I am looking to discuss this issue with people who have had this experience or who are knowledgeable about it. I don't have the right to tell people who can post or not, but that is my preference. Ill briefly tell the story and then talk about the TMS part.

I took Levaquin not long ago. After a few days I started to get tendon damage symptoms. I didn't know what was going on. At first it was my Achilles tendon on the right foot, I thought I must have injured it going up some stairs but that seemed odd. It was red and swollen with tendonitis. While researching how to fix tendonitis I came across information that tendon problems (bad ones, and more) can be caused by the class of anti-biotics knows as flouroquinolones. I wondered if that was what I was taking, and it was. In the US those are usually Cipro and Levaquin, but there are others.

Then I got the damage in my left foot. Then it spread to other places. Right now I can barely walk. My first symptoms were between and three and four weeks ago. If you go on line and look this up its' very scary, people in very bad shape. I am in rather bad shape right now. I was even having those "dark thought" if you know what I mean and they still come and go. Chronic pain, cant walk, its terrifying.

The scariest part is that they don't know how long it will take to heal or if you will ever heal. So there is not much choice to go on the support groups, doctors have no cure. I am on a support group on Reddit, they are supposedly much more positive than the Facebook group so I stay there.

This "floxing" as it is called - because you took a "flux" antibiotic - is very real and debilitating imo. Most people seem to mostly heal, but take a very long time. The quicker cases are in months, many (m0st) take years - it seems average is between one and two years. Some take up to four years and some just go on and on. Many, maybe most, dont ever quite get to 100 percent but seem OK with 70 to 90 percent.

So I have been almost disabled overnight but I am in what they consider the acute stage. That would be describe as the first three or six months. After that most people improve, however slowly, but not all, and some only start to improve after a year even more. Symptoms vary with people but they are are mostly related to the tendons, but because this is the only antibiotic group that passes the blood brain barrier many have neurological symptoms as well and pscyological.

TMS

OK so in my despair I have have been worried, obviously, about things. Primarily, will I be in a painful immobile state a long time and will I possibly have this forever.

I was wondering about the long-haulers, the long-term people. Why are they not healing? Now there are a lot of factors here. Age, how many pills you took, prior health, etc. But still, could it be that some people - the people that have had it for five or ten years and still have not healed, could things have morphed into TMS at some point.

And THEN I read a post from one of the members of this group. This person had it for two years, had most symptoms gone but one foot still hurt. He finally said the heck with it. He said I am just going to "go ham" on this foot, as he phrased it. and he went to the gym and stopped his foot onto the ground hard. The pain went away and he was gone for good.

I though, my God, that is very close to Sarno right there. He told his brain that he is done with the pain and it listened.

Now I think this condition is very real, I have it. Its a nightmare beyond anything ever in my life. Hell.

Having said that, isn't that enough to cause enough anger to fuel TMS and to keep it going?
TMS is so common, the cases that go on and on for years, can't we at least suspect TMS?
Apparently there is SOME healing mechanisms going on somewhere, so if one basically never heals, doesn't that bring TMS into the picture as a possibility?

Any hope would help. It's hard enough thinking I might be messed up for six months to two years or so. It's almost unbearable to think it won't ever heal. Perhaps the long haulers are part, mostly, or all TSM. I mean they are the minority to begin with, it would be nice to know that its even a smaller minority than that, and also perhaps some of those long haulers can avail themselves of TMS theory.

Thank you

 

[miffybunny]

I wrote to Dr. Schubiner about this issue on behalf of my client and he confirmed that these "post- fluoroquinolone syndrome' and "post finasteride" syndromes are totally made up. He asserted that there is "absolutely no ongoing harm or disability to these medications, even if they took them for a long time." You already know this all tms, so don't fall into the trap of the fear mongering propaganda. Our beliefs are very powerful so choose wisely.

 

[Cheffo]

Y

I wrote to Dr. Schubiner about this issue on behalf of my client and he confirmed that these "post- fluoroquinolone syndrome' and "post finasteride" syndromes are totally made up. He asserted that there is "absolutely no ongoing harm or disability to these medications, even if they took them for a long time." You already know this all tms, so don't fall into the trap of the fear mongering propaganda. Our beliefs are very powerful so choose wisely.

Yes, “the reign of pain is mainly in the brain”, Dr. Shubiner.

I have chased TMS all over, I think this one would take a Wizard level TMS rating to beat. I don’t know about the acute phase of this, it does not look or feel like it. My tendon has physical damage I could see. I mean tearing a tendon, hmm. Lots of people have very specific and damaging symptoms with this, sometimes deadly, that’s usually not TMS. Because tendons are in eyes many get permanent eye damage, mostly floaters in visual field but permanently, also detached retinas. And heart damage.

These types of symptoms seem way beyond TMS. And the people I read about seemed mostly good/great lives not going through divorces etc like Steve Ozanich says. My life was ok. And I did not know about the Achilles tendon thing until after, so it could not have been in my unconscious, or unlikely.

These symptoms are so powerful and so specific. Look, these drugs are not like penicillin, that’s just bread mold. These are powerful synthetic drugs literally designed to kill. The companies literally acknowledge that, and the FDA also hence the black box warnings.

Shubiner is smart and awesome and I am sure you are too, but I don’t think my brain is capable of this level deception. And it does not seem to match up with typical theory imo. I hurt in tendons I never heard of or knew I had.

So at present, I still think I have been poisoned, if you will. It feels like I have been chemically injured, all due respect to you and the good doctor. It’s been bad, I have been thinking “those thought” if you know what I mean. Very tough time. I am almost disabled, like I said if it’s TMS it’s beyond me.

Having said that, I do think TMS can keep the situation going, like I said. I certainly hope I’m wrong, and you are correct.

 

[miffybunny]

It's common for people to sustain a real injury or side effect from a drug, along with actual physiological changes, but what happens is the brain takes the baton and maintains the "chronicity". Very often people get medicalized , are given confusing and contradictory messages of danger from specialists or online message boards, or google, or well meaning friends, which just adds fuel to the fire. They find themselves in a morass of fear and "what if" questions, which serves to perpetuate the tms strategy. The more these signals and pathways get reinforced, the more they alter a person's physiology over time. Having painted that dire picture, however, the good news is that most if not all of this can be reversed. The body is a self repair organism and those drugs are long out of your system. It's quite possible that the only emotion at play here is plain old fear. I think your best bet is to make an appointment with Dr. Schubiner or Dr. Stracks so that they can dispel your fears and answer all of your questions. The solution is clarity imo.

 

[Cheffo]

Thank you. This is such a powerful message. Fear can take over. I think, as you said, the initial shock or injury may be "real", but then the healing mechanisms ought to take over.

Perhaps TMS plays even a more prominent role, as Dr. Shubiner thinks - who I am to rule that out, TMS has been a mind blowing theory from the start. Such profound things it can do. It's good to hear that perspective as well. I will try to keep my mind open to TMS with floxing, whether on the level of generation of symptoms or maintaining them, I will keep those arrows in my quiver, Thanks again.

 

[momar]

I wrote to Dr. Schubiner about this issue on behalf of my client and he confirmed that these "post- fluoroquinolone syndrome' and "post finasteride" syndromes are totally made up. He asserted that there is "absolutely no ongoing harm or disability to these medications, even if they took them for a long time." You already know this all tms, so don't fall into the trap of the fear mongering propaganda. Our beliefs are very powerful so choose wisely.

hi bunny

you said you wrote to Dr H Shubiner to ask for your client who was floxxed - did they get a full healing ? how did all that go ?

 

[miffybunny]

hi bunny

you said you wrote to Dr H Shubiner to ask for your client who was floxxed - did they get a full healing ? how did all that go ?

Unfortunately the client was not ready to "buy in" fully to the mind body approach and I never heard back from them. The truth still stands though. There is their subjective view, and there's objective truth so focus on that and you will get better guaranteed.

 

[momar]

t

Unfortunately the client was not ready to "buy in" fully to the mind body approach and I never heard back from them. The truth still stands though. There is their subjective view, and there's objective truth so focus on that and you will get better guaranteed.

thanks for your reply

i think i have dealt with this or similar. - sick with bacteria and needed treatment - then uring treatment i developed terrible joint pains - now i am trying to work on how to heal from this - what might be the first few steps ? i am not in fear of the pain today / i am meeting my needs as best i can and reducing stress

 

[mikeinlondon]

Interesting, I took Clarithromycin (antibiotic), Amoxicillin (antibiotic) and Omeprazole (PPI) last autumn. These aren't flox type anti-biotics but they are very strong. On last day of treatment my life changed. I started to experience severe sensations when sitting. I still experience this. I've had blood tests, MRI's (hips/legs/pelvis/brain), physical checks and nothing could be found (this would check for structural damage, nerve autoimmune, bone cancers). I concluded the sensations can only be TMS. The sensations are so severe that it could only be brought about by structural damage, bone cancer or Mind-Body. What else could it be? The brain is generating pain but there's no tissue damage.

 

[Diana-M]

Interesting, I took Clarithromycin (antibiotic), Amoxicillin (antibiotic) and Omeprazole (PPI) last autumn. These aren't flox type anti-biotics but they are very strong. On last day of treatment my life changed. I started to experience severe sensations when sitting. I still experience this. I've had blood tests, MRI's (hips/legs/pelvis/brain), physical checks and nothing could be found (this would check for structural damage, nerve autoimmune, bone cancers). I concluded the sensations can only be TMS. The sensations are so severe that it could only be brought about by structural damage, bone cancer or Mind-Body. What else could it be? The brain is generating pain but there's no tissue damage.

I’ve noticed that people with health anxiety (including people who are afraid of medication or afraid of potential side effects of medication) tend to get their TMS right around the time of using a medication or getting off of it. The brain knows how to scare you and the best timing to do it. As long as it can keep you in doubt even a little bit, it can hold you hostage. One of the best ways to fight is with an evidence sheet.

 

[Rusty Red]

Levaquin is one of the only antibiotics I can take thanks to a host of antibiotic allergies (though those were as a child, who knows what would happen now). I don't think I ever knew about this, but I knew it was pretty hardcore and not one you want to take regularly. I've seen so many of those sue your doctor ads for drugs you took, it's hard to know what is real and what is fear mongering these days.

I'd still take it, for the record, if I had a bacterial infection that required it.

 

[mikeinlondon]

You know what’s crazy? I drank a little Goat Milk Keifer late last year. Never drank it prior but heard it’s good for your gut. It’s just Keifer you can buy at a health food store! I then read some fear mongering posts on Reddit that it could increase anxiety. Within 24 hrs my anxiety went thru the roof and I began to have difficulties breathing that has persisted to today. Crazy. It’s just Keifer. I can’t think of any possible reason other than a mind to body symptom. I now have a fear of drinking Kefir! That’s classical conditioning at its finest. Nothing makes sense other than TMS for these sorts of experiences.

 

[mikeinlondon]

I’ve noticed that people with health anxiety (including people who are afraid of medication or afraid of potential side effects of medication) tend to get their TMS right around the time of using a medication or getting off of it. The brain knows how to scare you and the best timing to do it. As long as it can keep you in doubt even a little bit, it can hold you hostage. One of the best ways to fight is with an evidence sheet.

Or just some Keifer!

 

[Rusty Red]

You know what’s crazy? I drank a little Goat Milk Keifer late last year. Never drank it prior but heard it’s good for your gut. It’s just Keifer you can buy at a health food store! I then read some fear mongering posts on Reddit that it could increase anxiety. Within 24 hrs my anxiety went thru the roof and I began to have difficulties breathing that has persisted to today. Crazy. It’s just Keifer. I can’t think of any possible reason other than a mind to body symptom. I now have a fear of drinking Kefir! That’s classical conditioning at its finest. Nothing makes sense other than TMS for these sorts of experiences.

That was me with creatine. I started taking it several years ago to help with my lifting and then read it causes anxiety in some people who already have it, and guess what? Never took it again.

 

[NewBeginning]

You know what’s crazy? I drank a little Goat Milk Keifer late last year. Never drank it prior but heard it’s good for your gut. It’s just Keifer you can buy at a health food store! I then read some fear mongering posts on Reddit that it could increase anxiety. Within 24 hrs my anxiety went thru the roof and I began to have difficulties breathing that has persisted to today. Crazy. It’s just Keifer. I can’t think of any possible reason other than a mind to body symptom. I now have a fear of drinking Kefir! That’s classical conditioning at its finest. Nothing makes sense other than TMS for these sorts of experiences.

Oh wow, @mikeinlondon - this has been such a big part of how all of this for me not only got started but keeps trying to continue - particularly with all sorts of different foods, but supplements as well.
Adds on a ridiculous whole other layer of anxiety.
The funny thing is I followed all the BEST practices for all of it to a T for years without wavering and that didn't matter -- there's always some contradiction or something someone mentions about oxalates or whatever the latest "watch out for..." trend is. Meanwhile, I just revisited this series on Food History (one of the Great Courses) and am reminded of how the trends and ideas about "what causes what" change throughout time and so much based on beliefs and what is going on in a culture/society.

Just this morning, as I started researching something related to a particular food finally came to the "F THIS!"
This is my personal rebellion - ha ha - no more checking everything -- instead taking time to remember to trust that my body has more wisdom than some random post about something that doesn't even tie in to the research data (and while I am at it, no more checking the f'ing app to see what the UV is to determine if I can go out in the sun! ha ha) I've lived a large part of my life without all this data and there was a whole lot less anxiety then.
I have all the basics about nutrition, and sunlight for that matter (probably knew more intuitively when I was 10!). Saving my curiosity about research for other areas!

So, yeah - limiting aspects of classical conditioning be gone... the Era of RE-WILDING begins. ha ha

 

[momar]

Interesting, I took Clarithromycin (antibiotic), Amoxicillin (antibiotic) and Omeprazole (PPI) last autumn. These aren't flox type anti-biotics but they are very strong. On last day of treatment my life changed. I started to experience severe sensations when sitting. I still experience this. I've had blood tests, MRI's (hips/legs/pelvis/brain), physical checks and nothing could be found (this would check for structural damage, nerve autoimmune, bone cancers). I concluded the sensations can only be TMS. The sensations are so severe that it could only be brought about by structural damage, bone cancer or Mind-Body. What else could it be? The brain is generating pain but there's no tissue damage.

have you tried mind body work at all to heal ?? I took Clarithromycin - which yes I couldnt find anything online really to say it does the same as the fluox type - but possibly ! or jsut less severe issues - we can heal - our bodiesknow what to do if we just support them the best we can

 

[Cactusflower]

Yesterday I posted an excellent interview with a TMS doctor who explains a variety of symptoms - things which are related to "floxing" eg. people who take vaccines and have reactions to them - often days or weeks (months) after the vaccine, etc. When she looks back on the patients history she finds they have often had other TMS symptoms, mystery illness, related symptoms they are currently experiencing or anxiety that they were previously unaware of. She also explains what to do about it. Here's a link to the interview:

https://www.tmswiki.org/forum/threads/what-is-the-work-pain-pt-interview-with-dr-kennedy.29849/ (What is "THE WORK" - Pain PT interview with Dr. Kennedy)

 

[Baseball65]

"post- fluoroquinolone syndrome' and "post finasteride" syndromes are totally made up.

Yeah. I asked about that before I was prescribed one of the floura-quina-whatever-anines.

Doctor almost LOL'd.....said the only reason they have to say that is based on the original testing...
You and I know that if two people in the study had TMS it's mass projecting it out to the world...like a negative symbiosis.
I took it. I worked out while I was on it and even ran. Because I knew I was sensitive to suggestion I really made sure I was in touch with ANGER and Fear as much as I could be and did my morning TMS work a little more thoroughly

and ......drumroll...nothing. Cipro..same deal.

 

[Cheffo]

Levaquin is one of the only antibiotics I can take thanks to a host of antibiotic allergies (though those were as a child, who knows what would happen now). I don't think I ever knew about this, but I knew it was pretty hardcore and not one you want to take regularly. I've seen so many of those sue your doctor ads for drugs you took, it's hard to know what is real and what is fear mongering these days.

I'd still take it, for the record, if I had a bacterial infection that required it.

this is a completely different thin TMS. The drug company literally admit that it can disable you. That’s why it has a black box warning. And now it is impossible to sue them because they put the warning on it, but the problem is the doctors don’t usually read the warning and people just trust their doctor

also believe it or not, the generic version does not need to even have a warning and most people get the generic version. they have approved a disability code for this disease. The FDA has acknowledged This drug can be completely disabling for decades.

I am 100% on board with Sarno and it dramatically Helped me you can even saysaved me (Sorry about the random capitalizations. I am using voice to text)

I was never suicidal, but I am going to Switzerland to end things and this is in no way a cry for help. In fact, I am not even depressed. I’m just completely crippled.

This differs from TMS in so many ways. First of all with TMS you generally get something you know about like back pain or neck, pain or allergies. This was giving me symptoms like Achilles tendinosis on both feet and I had never heard of anything like this.

my luck I read something about this connection so I looked at the bottle to see if I had taken that type of medicine and I did. Other weird symptoms would come not think I had heard of. Unlike my old TMS, these never ever stop even for a second, There was no correlation to stress or anything like that.

Another thing was that this was finally a good time of my life where I was financially free, not rich, but I had a small business I enjoyed and had plenty of time to take walks and exercise and just got a dog. I do not have any traumatic thing like a break up or financial problems, I was Peaceful with low stress and a few friends and hobbies. I had even just found out that I was very talented at playing the drums at age 56 and had time to purchase drums and the leisure to play them.

And I wasn’t even bored like Retirement I still had to work, but I enjoyed my business. It was a little stressful, but just enough to keep it interesting.

My typical TMS I guess was moderate to sometimes moderately severe. Usually TMS, you cannot see physical signs like my Achilles tendons you could see my ankles and one leg had a lump on the muscle and still has it. I know it’s possible perhaps in severe cases to have things you could see Steve Ozanictz had some pretty severe things but a lump that is there and never goes away for over a year is not typical.

also, I really never had the most severe TMS. I was never abused as a child for example and interestingly, I had just started speaking a little more to my brother.
But again, we weren’t speaking a lot just a little more and I was also speaking a little more to my daughter. These were nothing dramatic, just slight improvements, but everything was slightly or moderately improving in my life.

it was definitely the best I had experienced and I could finally use my decades of wisdom and many mistakes and some tragic bad luck in the past to finally be stabilized and my job even involved helping people so that was nice too. I was renting rooms and I was doing well enough where if someone needed a place but couldn’t pay for a few weeks I was able to give them free rent rent until they got a job. I could do this a few weeks not for months or years, but people were very appreciative.

I was also listening to Eckhart Tole and learning to live in the moment. This drug induces, the worst torture imaginable, especially in the more severe cases. I don’t know of anyone where TMS has helped this. They have taken scans of the attendance and shown that the tenants have been damaged. They no longer have the same even lines. with TMS you can’t see actual damage to the tendons the theory is that oxygen Is temporarily cut off, but whatever the mechanism it’s not mechanical damage like this.

Believe me, no one is more disappointed than me that TMS Theorycannot fix this. I literally cannot take care of myself whatsoever. I never had TMS even remotely like this.

John Sno never said that if you drink Drano, your stomach pain is TMS in that situation. I have spoken to many people and read hundreds of accounts and there is no correlation between this disorder and anything related to TMS such as divorce or financial problems.
I am an anxious person with TMS personality but many people with this are nothing like that. Some friends with this are very young and had no anxiety no health problems just randomly crippled after the drug.

Having said that if any top TMS person wants to call me that’s fine. I was convinced in the past that all fibromyalgia and Chronic fatigue aee TMS but now I would attribute some to TMS and some to this drug category, possibly Some other drugs.

with mind induced pain, which is very common sono is incredible, miraculous. But this drug it is not an allergic reaction. It is abut this drug it is not an allergic reaction. It is a powerful poison And he is designed to kill, but unfortunately, when it goes wrong, it attacks the wrong things it attacks the host. The main theory is that it kills mitochondria by the truckload when it goes wrong and that has widespread effects and mitochondria are not easily replaced, and they are critical.

 

[mikeinlondon]

Hang on a minute. Lets look at this sensibly. Sarno et. al. always said rule out structural issues. You are right about the black box warning. Fluoroquinolones, including LEVAQUIN , are associated with an increased risk of tendinitis and tendon rupture in all ages. So, I guess my question is, have you checked for structural issues i.e. have you had scans that confirm that you have inflammation and/or rupturing of your tendons? If you did have scans and they show damage then you may have a point. If you had scans that confirm no damage to your tendons then I would say it's likely TMS and your language i.e. powerful poison/designed to kill is adding fuel to the fire i.e. increasing your fear and putting your brain in severe danger mode thus increasing TMS symptoms. So, have you had the scans to confirm you indeed have damage?

Is the pain of Achilles tendinosis so bad that you'd want to end your life? There must be something else going on here. Have you been formally diagnosed with this condition? Have you tried any drugs for pain relief?