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Lukasz
5 years ago
ASKING FOR YOUR PRAYERS:
My sister-in-law’s condition has taken a turn for the worse and we’re concerned for her life. Her limbs are extremely swelled up and her face is now starting to swell up once again. Her lips in particular are in bad shape. She has been taken to 3 different hospitals in Toronto and surrounding area and all 3 hospitals have sent her home after administrating steroids, EpiPen, Benadryl or all of the above. Nothing has worked to bring down the severe ADR and we’re now extremely worried as this has been going on since Christmas.
They are now on their way here and will be making another trip to a local hospital, 4th in as many days. If I could please ask for your prayers during this difficult time. My sister-in-law helped me a lot during my darkest hours and days by opening her house to me when I was experiencing psychosis and countless other symptoms from Clarithromycin and Ciprofloxacin. I am forever indebted to her and my brother for their support.
If anyone has any advice/suggestions at this point in time I would be glad to hear them.
Andrea
5 years ago
This is terrible Lukasz. There isn’t much I can do or suggest right now. Sorry, but the condition of your sister in law seems to be very tragic, and I really don’t know what to say.
The only thing I can suggest is to keep in mind WHY she is in this situation right now. Because of her suspected sinusitis??? Of course not. She’s in this situation becasue of the wrong and unnecessary treatment she received from the doctors. Like most of us. There’s plenty of information out there on how dangerous these drugs are. How they shouldn’t be prescribed for “suspected” infections and how they shouldn’t be used with other drugs like NSAIDs or steroids. This is just so wrong.
Tell them (your sister in law and family) to keep the prescription and the box and start thinking about a lawsuit.
Sorry, I understand I should be minding by own business, expecially in a situation like this, but this is unacceptable. Please keep us updated. Best wishes.
Andrea.
Andrea
5 years ago
Bob, I suffer from chronic pelvic pain. I was considering ozone injection or instillation for this problem. I’ve found a doctor here in Italy that use this kind of treatment. But I a bit concerned about the side effects. If not done correctly ozone could be very toxic. The last thing I want is to get sick again while finding a way to get better. Can you tell more about your experience with it? Thanks.
It would be a shame to not copy and paste this analysis of far to many of the doctors in the medical world. It is an amusingly accurate assessment. Read it and have a laugh. We must give credit to Erik Johnson. A blogger from another web site.
EPIDEMIC OF MENTAL ILLNESS IN DOCTORS
The emergence of Medically Unexplained Illnesses has revealed an epidemic of behavioral problems and personality disorders in doctors.
Patients expressing unfamiliar complaints to their physicians often induce the “It’s All In Your Head” (AIYH) or the “That’s Impossible” response in doctors suffering from these behavioral problems and personality disorders.
Physicians fixated upon the metaphysical belief system of “If we don’t know about it, then it doesn’t exist” are suffering from a mental defect or psychological condition known as “Doctors with Unexplained Medical Beliefs”: D.U.M.B.
DUMB doctors are comprised of subgroups characterized by opportunists who are feigning to be DUMB for monetary gain: “Medicalingering” or of those doctors who are not in possession of sufficient information to render an intelligent diagnosis: “Factlessitious Disorder”.
Physicians who are suffering from DUMB disorder place an inordinate emphasis on theories of psychological causality for virtually any unfamiliar complaints that are presented, and manifest a distinctive lack of observational skills when confronted with obvious abnormalities. Doctors who exhibit obsessive preoccupation with psychosocial etiologies should be regarded with extreme caution: “Psychosomatization Fixation Disorder” or “Psychologizing” is a distinctive characteristic of mental illness, and should be considered a warning sign that the individual is not rational and may in fact be dangerously DUMB.
DUMB disorder may be concomitant but should not be confused with “Signs of Thoroughly Unmistakable Physician Intelligence Deficiency” : “S.T.U.P.I.D.”,
as a STUPID physician is uniformly incompetent, while a DUMB doctor is only mentally paralyzed into “psychologizing” by unfamiliar symptoms and complaints.
An immediate investigation is warranted to assess the prevalence of DUMB and STUPID doctors, and to determine the detrimental impact that physicians suffering from these mental defects are having on their patients and the health care system.
Antony
5 years ago
Thoughts on vaccinations after floxing? I have been worried about meningitis since my friend got it a few years ago and nearly died, and a lot of people who get it lose their limbs, and I found out there is a vaccination for certain types of meningitis, but I’m worried about any sort of vaccination since I was floxed. Just not sure what to do and would like to hear others thoughts.
L
5 years ago
well this is interesting, Lisa. I can’t find the thread on gut / elimination issues, but I was searching for an alternative to ketotifen oral (prescribed for my possible mast cell activation syndrome). I don’t like the idea of any pharmaceuticals, but this was the only thing the mast cell specialist had to offer. The problem is, it is no longer sold in the US. (I suspect it has to do with big pharma’s greed. A) not enough money for them and B) it is useful for asthma, but they would rather you take their expensive steroid inhalers.) Anyhow, to get it here, you have to buy it at a compounding pharmacy, and it isn’t cheap. IT is costing me around $60 a month. That’s on top of the hundreds I spend on other supplements. But this is what I found that was interesting and I thought of you. http://www.collegepharmacy.com/images/download/Woeller_Ketotifen_Protocol.pdf
Lukasz
5 years ago
Nothing like closing out the year by having the scum at the social services office stop your monthly financial support. Not only am I completely broke, in debt and unable to pay rent, now I have no money for food. I hope these people find themselves in my shoes one day. Happy 2019.
Andrea
5 years ago
Happy new year everyone.
I’ve took some probiotics a couple of weeks ago and after a few days they gave me a lot of bloating. Even if I stopped, it’s been a few days, the bloating still bothers me. I’m so disappointed.
I started taking them not because I had GI problems, actually I’ve never experienced GI problems since being floxed, but more for prevention, and now I’m experiencing this??
Any suggestion on what to do?
hopeless
5 years ago
how come there is no forum for FQ toxicity? seems like we should have something like that. i know there are groups but no forum. also benzo withdrawal is very similar to FQ toxicity, wonder whats going on there
If we had a forum as well, where people could talk about treatments that worked for them could that help? The storys section does that here too, but to bounce ideas off one another i think a forum could be ok
There would be different sections for different symptoms maybe one would be ‘neurologica’ others would be ‘immune’ etc. other sections talking about ‘treatments’ and so on
Lisa does great work and we should all be thankful for that, and this amazing site. I still think a more standard forum could be useful, where people bounce ideas more off eachother, and share all their testing and so on. I am probably to ill to do something like this, but maybe i know others that can. I also feel like there isint much activity with fq community in some aspects. even on facebook i dont see many people posting much, maybe people are to sick and or given up hope? or got better and dont want to come around anymore
DP
5 years ago
Has anyone tried 4Life Transfer Factor® Tri-Factor® Formula? I am keen to explore and would like to know if anyone has any experience
Just a general question. Do your symptoms change in intensity from day to day and even during the day? I am getting quite a bit better (85% of normal) but in my last relapse one of my old symptoms (gone for over 2 years) returned. This is a weird sensation of cold/tingling in my legs and a bit in my arms. It is only on the dorsal surface of my arm and legs – BTW. At the same time I have more traditional peripheral neuropathy in my feet that is a burning / pain, but this has never completely gone away.
For both symptoms I notice that the intensity of the symptoms changes from day to day and even during the day sometimes. The neuorpathy in my feet sometimes becomes very very minor for a week or more only to creep back in and then about every 5 to 6 months will intensify for a week or two. On days when it is in the low pain zone which is most common it will cycle even during the day being worse early in the day and getting better as the day progresses most days though it can flip. Today for example started out pretty bad but by the time I am writing this at 2:00 local time my feet are completely normal – no pain at all.
The leg tingle is more consistent, but it too gets less as the day progresses and has periods where its intensity increases for a few days then recedes. Putting a blanket on my legs will make the symptoms nearly go away as will wearing shorts, so it is some kind of weird sensory thing, but I don’t understand how the two could both have the same action. Winter in the U.S. so shorts are not an option other than at the gym.
I can’t find any correlation to my actions, environment, or diet causing the fulctuations. It is not a matter of varying my supplementation or anything else I can find. Also the two are independent of one another – for example right now feet are not an issue at all but legs are having a bad day. Weird!
For anybody with suggestions my primary treatment is Vitamin D, Mg including twice weekly Epsom salt baths and B complex vitamins – good quality methylated version as I am C677T MTHFR. All my levels for these nutrients were good last time checked, though B6 was a bit high and it is time to repeat Mg. Wondering if it might be low iron – I was low in iron when first floxed but built it back up without supplementing and when last checked 18 months ago it was okay.
Thanks for letting me vent. If not for the new/returning symptoms with this recent relapse I might have been writing a recovery story by now and it is really hard to get so close only to have the finish line moved on me again!!
L
5 years ago
Also, (this is from a post from Lisa) here are possible symptoms of MCAD (pretty much everything but the kitchen sink) skin lesions or sores, skin rash, spots, redness, hives, persistent fatigue, itching, flushing & severe sweating, joint, bone pain, headaches, tachycardia (racing heartrate), eyes tearing/dry, eye pain, persistent body/tissue pain, difficulty exercising, vertigo, episodes of low body temperature, unexplained Vitamin B12 deficiency, scents/odors/chemical reactions, difficult menses (females), numbness & tingling in face and extremities, skin feels on fire, unexplained anxiety, sudden drops in blood pressure, fainting, persistent diarrhea, vomiting, unexplained weight loss, cognitive impairment, sinus problems, chest pain, vision problems, hair loss, mouth sores, nausea, swelling & inflammation, odd reactions to insect stings, anesthesia difficulties, anemia, thyroid problems, decreased bone density, unexplained weakness, shortness of breath, sunlight sensitivity, temperature (hot/cold) sensitivity, difficulty with foods, drinks, anaphylactoid reactions, anaphylaxis, gastrointestinal pain, bloating, unexplained medication reactions, enlarged liver/spleen, liver/spleen/bladder/kidney pain, enlarged lymph nodes, frequent urination, recurring infections, neuropathic pain, constipation, iron deficiency, unexplained bruising, bleeding, malabsorption, intermittent tinnitus or hearing problems.
ciprovictim
5 years ago
@Barbara
how did you feel after the first ozone treatment? Did you have reflox symptoms?
Andrea
5 years ago
Has anyone ever tried Colloidal Magnesium?
hopeless
5 years ago
that is the one thing that perplexed me the most about this condition. the way it cycles and wax and wanes in crazy ways, i have dozens of symptoms that do this, MCAS does this alot too. it seems as if for some it can cycle for a lifetime
ASKING FOR YOUR PRAYERS:
My sister-in-law’s condition has taken a turn for the worse and we’re concerned for her life. Her limbs are extremely swelled up and her face is now starting to swell up once again. Her lips in particular are in bad shape. She has been taken to 3 different hospitals in Toronto and surrounding area and all 3 hospitals have sent her home after administrating steroids, EpiPen, Benadryl or all of the above. Nothing has worked to bring down the severe ADR and we’re now extremely worried as this has been going on since Christmas.
They are now on their way here and will be making another trip to a local hospital, 4th in as many days. If I could please ask for your prayers during this difficult time. My sister-in-law helped me a lot during my darkest hours and days by opening her house to me when I was experiencing psychosis and countless other symptoms from Clarithromycin and Ciprofloxacin. I am forever indebted to her and my brother for their support.
If anyone has any advice/suggestions at this point in time I would be glad to hear them.
This is terrible Lukasz. There isn’t much I can do or suggest right now. Sorry, but the condition of your sister in law seems to be very tragic, and I really don’t know what to say.
The only thing I can suggest is to keep in mind WHY she is in this situation right now. Because of her suspected sinusitis??? Of course not. She’s in this situation becasue of the wrong and unnecessary treatment she received from the doctors. Like most of us. There’s plenty of information out there on how dangerous these drugs are. How they shouldn’t be prescribed for “suspected” infections and how they shouldn’t be used with other drugs like NSAIDs or steroids. This is just so wrong.
Tell them (your sister in law and family) to keep the prescription and the box and start thinking about a lawsuit.
Sorry, I understand I should be minding by own business, expecially in a situation like this, but this is unacceptable. Please keep us updated. Best wishes.
Andrea.
Bob, I suffer from chronic pelvic pain. I was considering ozone injection or instillation for this problem. I’ve found a doctor here in Italy that use this kind of treatment. But I a bit concerned about the side effects. If not done correctly ozone could be very toxic. The last thing I want is to get sick again while finding a way to get better. Can you tell more about your experience with it? Thanks.
No explanation needed. … http://www.myquinstory.info/fluoroquinolone-use-emergency-room-go-e-r-get-floxed/?fbclid=IwAR1nTYK_Vsau0meWCgaygBZpKc9LNGdK5s__mgCZp2Nel5COIJF-Vw0AEtY
Excellent discussion of “gas lighting” doctors, the entire pharmaceutical industry, and let us not forget the FDA.
https://www.hormonesmatter.com/musings-heretic-patient-floxed-fed/?fbclid=IwAR2mZi5ghGuNwgOt522zjQrALVsUoLb9ciET-yEw7sEXoqlRQxtIAENZudg
It would be a shame to not copy and paste this analysis of far to many of the doctors in the medical world. It is an amusingly accurate assessment. Read it and have a laugh. We must give credit to Erik Johnson. A blogger from another web site.
EPIDEMIC OF MENTAL ILLNESS IN DOCTORS
The emergence of Medically Unexplained Illnesses has revealed an epidemic of behavioral problems and personality disorders in doctors.
Patients expressing unfamiliar complaints to their physicians often induce the “It’s All In Your Head” (AIYH) or the “That’s Impossible” response in doctors suffering from these behavioral problems and personality disorders.
Physicians fixated upon the metaphysical belief system of “If we don’t know about it, then it doesn’t exist” are suffering from a mental defect or psychological condition known as “Doctors with Unexplained Medical Beliefs”: D.U.M.B.
DUMB doctors are comprised of subgroups characterized by opportunists who are feigning to be DUMB for monetary gain: “Medicalingering” or of those doctors who are not in possession of sufficient information to render an intelligent diagnosis: “Factlessitious Disorder”.
Physicians who are suffering from DUMB disorder place an inordinate emphasis on theories of psychological causality for virtually any unfamiliar complaints that are presented, and manifest a distinctive lack of observational skills when confronted with obvious abnormalities. Doctors who exhibit obsessive preoccupation with psychosocial etiologies should be regarded with extreme caution: “Psychosomatization Fixation Disorder” or “Psychologizing” is a distinctive characteristic of mental illness, and should be considered a warning sign that the individual is not rational and may in fact be dangerously DUMB.
DUMB disorder may be concomitant but should not be confused with “Signs of Thoroughly Unmistakable Physician Intelligence Deficiency” : “S.T.U.P.I.D.”,
as a STUPID physician is uniformly incompetent, while a DUMB doctor is only mentally paralyzed into “psychologizing” by unfamiliar symptoms and complaints.
An immediate investigation is warranted to assess the prevalence of DUMB and STUPID doctors, and to determine the detrimental impact that physicians suffering from these mental defects are having on their patients and the health care system.
Thoughts on vaccinations after floxing? I have been worried about meningitis since my friend got it a few years ago and nearly died, and a lot of people who get it lose their limbs, and I found out there is a vaccination for certain types of meningitis, but I’m worried about any sort of vaccination since I was floxed. Just not sure what to do and would like to hear others thoughts.
well this is interesting, Lisa. I can’t find the thread on gut / elimination issues, but I was searching for an alternative to ketotifen oral (prescribed for my possible mast cell activation syndrome). I don’t like the idea of any pharmaceuticals, but this was the only thing the mast cell specialist had to offer. The problem is, it is no longer sold in the US. (I suspect it has to do with big pharma’s greed. A) not enough money for them and B) it is useful for asthma, but they would rather you take their expensive steroid inhalers.) Anyhow, to get it here, you have to buy it at a compounding pharmacy, and it isn’t cheap. IT is costing me around $60 a month. That’s on top of the hundreds I spend on other supplements. But this is what I found that was interesting and I thought of you. http://www.collegepharmacy.com/images/download/Woeller_Ketotifen_Protocol.pdf
Nothing like closing out the year by having the scum at the social services office stop your monthly financial support. Not only am I completely broke, in debt and unable to pay rent, now I have no money for food. I hope these people find themselves in my shoes one day. Happy 2019.
Happy new year everyone.
I’ve took some probiotics a couple of weeks ago and after a few days they gave me a lot of bloating. Even if I stopped, it’s been a few days, the bloating still bothers me. I’m so disappointed.
I started taking them not because I had GI problems, actually I’ve never experienced GI problems since being floxed, but more for prevention, and now I’m experiencing this??
Any suggestion on what to do?
how come there is no forum for FQ toxicity? seems like we should have something like that. i know there are groups but no forum. also benzo withdrawal is very similar to FQ toxicity, wonder whats going on there
i mean more of a forum where there are different sections something like this http://www.benzobuddies.org/forum/index.php
If we had a forum as well, where people could talk about treatments that worked for them could that help? The storys section does that here too, but to bounce ideas off one another i think a forum could be ok
There would be different sections for different symptoms maybe one would be ‘neurologica’ others would be ‘immune’ etc. other sections talking about ‘treatments’ and so on
Lisa does great work and we should all be thankful for that, and this amazing site. I still think a more standard forum could be useful, where people bounce ideas more off eachother, and share all their testing and so on. I am probably to ill to do something like this, but maybe i know others that can. I also feel like there isint much activity with fq community in some aspects. even on facebook i dont see many people posting much, maybe people are to sick and or given up hope? or got better and dont want to come around anymore
Has anyone tried 4Life Transfer Factor® Tri-Factor® Formula? I am keen to explore and would like to know if anyone has any experience
the jackcruse one is for floxing?
when i think of forum i think of something like this https://forums.phoenixrising.me/index.php
maybe if we had even 100 people, with all our symptoms and test results across the board we could find things similar
only forum i found is https://fluorchinolone-forum.de/ but i dont speak german, and that site was a link from here
Hi everyone,
Just a general question. Do your symptoms change in intensity from day to day and even during the day? I am getting quite a bit better (85% of normal) but in my last relapse one of my old symptoms (gone for over 2 years) returned. This is a weird sensation of cold/tingling in my legs and a bit in my arms. It is only on the dorsal surface of my arm and legs – BTW. At the same time I have more traditional peripheral neuropathy in my feet that is a burning / pain, but this has never completely gone away.
For both symptoms I notice that the intensity of the symptoms changes from day to day and even during the day sometimes. The neuorpathy in my feet sometimes becomes very very minor for a week or more only to creep back in and then about every 5 to 6 months will intensify for a week or two. On days when it is in the low pain zone which is most common it will cycle even during the day being worse early in the day and getting better as the day progresses most days though it can flip. Today for example started out pretty bad but by the time I am writing this at 2:00 local time my feet are completely normal – no pain at all.
The leg tingle is more consistent, but it too gets less as the day progresses and has periods where its intensity increases for a few days then recedes. Putting a blanket on my legs will make the symptoms nearly go away as will wearing shorts, so it is some kind of weird sensory thing, but I don’t understand how the two could both have the same action. Winter in the U.S. so shorts are not an option other than at the gym.
I can’t find any correlation to my actions, environment, or diet causing the fulctuations. It is not a matter of varying my supplementation or anything else I can find. Also the two are independent of one another – for example right now feet are not an issue at all but legs are having a bad day. Weird!
For anybody with suggestions my primary treatment is Vitamin D, Mg including twice weekly Epsom salt baths and B complex vitamins – good quality methylated version as I am C677T MTHFR. All my levels for these nutrients were good last time checked, though B6 was a bit high and it is time to repeat Mg. Wondering if it might be low iron – I was low in iron when first floxed but built it back up without supplementing and when last checked 18 months ago it was okay.
Thanks for letting me vent. If not for the new/returning symptoms with this recent relapse I might have been writing a recovery story by now and it is really hard to get so close only to have the finish line moved on me again!!
Also, (this is from a post from Lisa) here are possible symptoms of MCAD (pretty much everything but the kitchen sink) skin lesions or sores, skin rash, spots, redness, hives, persistent fatigue, itching, flushing & severe sweating, joint, bone pain, headaches, tachycardia (racing heartrate), eyes tearing/dry, eye pain, persistent body/tissue pain, difficulty exercising, vertigo, episodes of low body temperature, unexplained Vitamin B12 deficiency, scents/odors/chemical reactions, difficult menses (females), numbness & tingling in face and extremities, skin feels on fire, unexplained anxiety, sudden drops in blood pressure, fainting, persistent diarrhea, vomiting, unexplained weight loss, cognitive impairment, sinus problems, chest pain, vision problems, hair loss, mouth sores, nausea, swelling & inflammation, odd reactions to insect stings, anesthesia difficulties, anemia, thyroid problems, decreased bone density, unexplained weakness, shortness of breath, sunlight sensitivity, temperature (hot/cold) sensitivity, difficulty with foods, drinks, anaphylactoid reactions, anaphylaxis, gastrointestinal pain, bloating, unexplained medication reactions, enlarged liver/spleen, liver/spleen/bladder/kidney pain, enlarged lymph nodes, frequent urination, recurring infections, neuropathic pain, constipation, iron deficiency, unexplained bruising, bleeding, malabsorption, intermittent tinnitus or hearing problems.
@Barbara
how did you feel after the first ozone treatment? Did you have reflox symptoms?
Has anyone ever tried Colloidal Magnesium?
that is the one thing that perplexed me the most about this condition. the way it cycles and wax and wanes in crazy ways, i have dozens of symptoms that do this, MCAS does this alot too. it seems as if for some it can cycle for a lifetime