For over a decade this page has been dedicated to enabling the conversation for floxies to talk with one another. Sign up and subscribe to get all the latest comments.
When you login first time using a Social Login button, we collect your account public profile information shared by Social Login provider, based on your privacy settings. We also get your email address to automatically create an account for you in our website. Once your account is created, you'll be logged-in to this account.
DisagreeAgree
I allow to create an account
When you login first time using a Social Login button, we collect your account public profile information shared by Social Login provider, based on your privacy settings. We also get your email address to automatically create an account for you in our website. Once your account is created, you'll be logged-in to this account.
DisagreeAgree
26.5K Comments
Inline Feedbacks
View all comments
Andrea
6 years ago
Thanks guys for your opinion
Barbara Arnold
6 years ago
Hi Guys,
I wanted to let you all know some good news. I went to my Doctor this morning for the results of my 6 month blood tests and while I was there I asked him if he had read the information I had given him about the EMA and other information about fluroquinolones. ( I had been bombarding him with information for the last 2 years now) He told me he was very interested and that he has a colleague in the University here and another in the UK who are looking into fluroquinolones. But most importantly he will NEVER prescribe them again. On hearing this I went to the local pharmacy and asked them if they had read the latest info I had given them. They told me they totally agree with me, but also the prescription rate for this poison had GREATLY reduced. This is a real step forward. I’m hoping the EMA will recommend they must not be used unless it’s a life or death situation, then I can sort the few Doctors left in the health centre that still need convincing by giving them a new directive from the EMA. The pharmacist said it’s the Spanish Government that allows fluroquinolones to be prescribed but if the EMA votes against them in June, this will to a long way towards them not being prescribed. I know in spite of the FDA warning it’s still dished out, but it would really help our argument against if we as individuals armed ourselves with the new directive and give it to EVERY Doctor we come across. I am praying it will happen with the EMA as I will take massive pleasure in taking it to my local hospital, where I was treated with contempt, along with MORE EVIDENCE to show them how disgustingly they behaved towards me.
Don’t think for one moment that every small action us floxies take make no difference, because the Pharmacist told me, it was because of all the bombarding of evidence I gave them and the Health Centre, that the prescription rate has really gone down.. I live in a little pond, but the ripples have spread.
I feel so much better about this, and has gone from my frustration with NO ONE listening to at last little acorns are growing.
Hey we haven’t talked in awhile. I thought this was worth bringing up because I haven’t seen this quote shared before.
There’s a rheumatologist/immunologist named Jonathan Edwards who occasionally posts on the web on researchgate and ME/CFS forums. He has views that would probably be considered “controversial” in his profession, but I’m not in a position to debate him on them.
Here’s something he posted regarding MMP enzymes in rheumatoid arthritis.
https://www.researchgate.net/post/Whats_the_composition_of_synovial_fluid
”
For a long time it has been popular dogma that collagenases and other proteases degrade cartilage in inflammation in joints. However, if you think about it this does not make sense. Many patients with RA have inflammation in joints for months without any loss of cartilage. Even if the collagenase in the fluid was 98% inhibited the cartilage should be all gone after this time. Uninhibited collagenase will destroy cartilage in an hour or so. So the collagenase must be effectively 100% inhibited. Yet during some episodes of inflammation cartilage can be destroyed in a few days. The only solution to this problem I could find after thinking about it for decades was that type II collagen in live cartilage is totally protected, both from collagenase attack, and in fact from mechanical wear, by a constant extrusion of hyaluronan and small proteoglycans from its surface – much in the way that the skin of fish and dolphins constantly extrudes mucins to lubricate and provide a barrier against attack. However, if the chondrocytes die there will be no extrusion of macromolecules so the surface collagen will be directly available to attack. When I first became interested in joint pathology I looked at hundreds of slides of RA joints in the Path library at St Bart’s Hospital in London and one thing that struck me was that whenever there was cartilage invasion or resorption the underlying chondrocytes were dead (absent). So that made sense.
”
If we apply this to fluoroquinolone toxicity it matches up: https://www.ncbi.nlm.nih.gov/pubmed/10663387
”
Human chondrocytes cultivated in CFX-supplemented medium (10, 40, 80 and 160 microg/ml) or Mg(2+)-free medium showed decreased ability to adhere to growth support, cell shape changes, and alterations in actin and vimentin cytoskeleton in a concentration dependent manner. Attachment of human chondrocytes to collagen type II coated cover slips was reduced to 90% in CFX group and 75% in Mg(2+)-free group on day 1. This effect even increased after 4 days of culture in the respective medium (32% in CFX and 58% in Mg(2+)-free group). We concluded that Mg(2+) deficiency is exerted via integrins, resulting in decreased ability to attach to extracellular matrix proteins and cytoskeletal changes.
”
Ciprofloxacin starts killing away the chondrocytes, leaving the type II collagen vulnerable to attack by MMP enzymes, over just a few days.
I think Naproxen and glucocorticoids can also increase them but I don’t have the studies on hand.
So it’s a dual effect and basically a perfect storm.
Ronna
6 years ago
Can anyone tell me what symptoms they have with the GI tract after being floxed. I’m trying to figure out if I have a GI problem or it’s from being floxed. I tested negative for SIBO, but still no sense of hunger for 17 months, weight loss and constant bleaching even after drinking water. I have also developed rapid gastric emptying for no reason. Any comments would be appreciated as I am struggling with this issue every day.
Don Mowers
6 years ago
Just some information. While surfing the web this online lab test site came up. It is a US organization so of little benefit to floxies outside the US.
Here it is: https://www.ultalabtests.com/Quest
It appears to be an online branch of Sonora Quest laboratories.
What impresses me is that they say they will do the RBC magnesium blood test for $29.00 I will be referred to a local Sonora Quest lab to have my blood drawn.
Others appear to want from $49 to $59 for the same test.
As I have said before. Do your own research and make up your own mind.
Just a note. I had my RBC magnesium test done through RequestAtest at a cost of $59.
I was sent to Sonora Quest labs for the blood draw and on the paperwork I see that my blood was sent to a Sonora Quest lab in California for the analysis.
The same Sonora lab that drew my blood for RequestAtest quoted me $145 if I was a walk in paying customer.
Geees!!!! What a rip off the medical community is!!!
Ronna
6 years ago
Did you gain your weight back? Did you ever loose your sense of hunger? Has that returned?
Thank you Don, that is what I have discovered. Keep my mind busy, I have difficulty sitting still so I am always moving, cleaning house rearranging things, hence no weight gain. Now trying to read or watch movies. My body just can’t sit still, and when I do, your right, my illness is the main focus. Thinking of going back to work part time to keep my mind busy. Wondering if I can do it. Thanks for your input.
Ronna
6 years ago
Yes, I am doing much better than you were. I don’t know how your doing it. It’s unimaginable! It has been 17 months for me, my hair fell out too, my food sensativities have improved and the ringing in my ears comes and goes now. Gut issues and head pressure are my biggest problems. Fortunately for me I only have dry eye now. In the beginning my right eye always filled up with blood for no reason. It’s been a year since this occurred. My extremities are always stiff. It I keep moving. I could not sleep either, MD gave me remeron 7.5mg for sleep and weight gain. It works some, but I would like to get off it, when I try too much anxiety. I recently found a ND to work with, he has given me CBD oil to wean myself off the remeron. He has 3 others like me so he is very interested in helping. I have had 2 IVs so far and have felt better after each one. Going for another tomorrow. I think I’m on the right tract now. I live in Tampa, Florida and would like to meet up with someone in my area so we could support each other. Thank you all for being there for me.
Ronna
6 years ago
Tomorrow I will get a Meyers IV with a push of Glutathione. I had it once before and the next day a white creamy liquid was on my lips like lipstick. I figured that was the poison coming out of me as my lips have been so very dry. See what tomorrow brings. I will try to wean myself from the remeron once I get a healthy weight. Your plan is good. ND gave me CBD oil to use at night. Doesnt seem to do anything. I’m surprised they would give you such a chemical for your body. I do not smoke, I think they give that for people trying to quit smoking to reduce anxiety. It doesnt touch the relentless anxiety this disease has.
Ronna
6 years ago
What kind of oregano oil do you use and how do you use it. I’ve read a little about it, but not sure what to use and how. Any info would be appreciated ????
Ronna
6 years ago
What is a carrier oil? Is it once a day, everyday?
Ronna
6 years ago
When do you take it besides illness like the flu?
Andrea
6 years ago
Hey Guys. Any info on Lorazepam (ativan) do you think that taking it for a couple of days would be hazardous?
Ronna
6 years ago
My doctor gave it to me in the beginning, to take 0.5 mg three times a day. It really helped me with the relentless anxiety. Now that the anxiety has subsided some, I only take it once a day in the morning, which is my worst time. I can’t get off of it. I’m now trying to wean myself off slowing, but it’s difficult. But it sure helped when I needed it. How bad is your anxiety?
Daniela
6 years ago
Many people on Floxie Hope for years have had a lot of problems using those kinds of pharmaceuticals, Andrea. You might be sensitive to them and then it’s too late.
I try to remember that anxiety and insomnia, which is my body crying about what happened, are also energy. You can redirect that energy. I never think suppressing is a good thing. After all the work with diet and the other modalities, it’s not worth the risk to take any more pharma.
Try any Youtube meditation. Meditating can be more restful than sleep. It can be very comforting as well.
Thanks everyone for the infos and opinions. I was thinking about Lorazepam because I hate to fly, and since I have to go to London I was thinking about something to help me with that issue. Anyway, I remember using it in the past, when I had to fly, and it never gave me much problems, but as Daniela pointed out, it’s probably not worth the risk. I don’t know…
Thanks guys for your opinion
Hi Guys,
I wanted to let you all know some good news. I went to my Doctor this morning for the results of my 6 month blood tests and while I was there I asked him if he had read the information I had given him about the EMA and other information about fluroquinolones. ( I had been bombarding him with information for the last 2 years now) He told me he was very interested and that he has a colleague in the University here and another in the UK who are looking into fluroquinolones. But most importantly he will NEVER prescribe them again. On hearing this I went to the local pharmacy and asked them if they had read the latest info I had given them. They told me they totally agree with me, but also the prescription rate for this poison had GREATLY reduced. This is a real step forward. I’m hoping the EMA will recommend they must not be used unless it’s a life or death situation, then I can sort the few Doctors left in the health centre that still need convincing by giving them a new directive from the EMA. The pharmacist said it’s the Spanish Government that allows fluroquinolones to be prescribed but if the EMA votes against them in June, this will to a long way towards them not being prescribed. I know in spite of the FDA warning it’s still dished out, but it would really help our argument against if we as individuals armed ourselves with the new directive and give it to EVERY Doctor we come across. I am praying it will happen with the EMA as I will take massive pleasure in taking it to my local hospital, where I was treated with contempt, along with MORE EVIDENCE to show them how disgustingly they behaved towards me.
Don’t think for one moment that every small action us floxies take make no difference, because the Pharmacist told me, it was because of all the bombarding of evidence I gave them and the Health Centre, that the prescription rate has really gone down.. I live in a little pond, but the ripples have spread.
I feel so much better about this, and has gone from my frustration with NO ONE listening to at last little acorns are growing.
ooops…that was supposed to be body, not bottom!
Another Mercola article about fluoride (fluoride awareness week):
https://articles.mercola.com/sites/articles/archive/2018/05/26/lawsuit-that-could-end-water-fluoridation.aspx?utm_source=dnl&utm_medium=email&utm_content=art1&utm_campaign=20180526Z2_NB&et_cid=DM208721&et_rid=316224642
@Lisa
Hey we haven’t talked in awhile. I thought this was worth bringing up because I haven’t seen this quote shared before.
There’s a rheumatologist/immunologist named Jonathan Edwards who occasionally posts on the web on researchgate and ME/CFS forums. He has views that would probably be considered “controversial” in his profession, but I’m not in a position to debate him on them.
Here’s something he posted regarding MMP enzymes in rheumatoid arthritis.
https://www.researchgate.net/post/Whats_the_composition_of_synovial_fluid
”
For a long time it has been popular dogma that collagenases and other proteases degrade cartilage in inflammation in joints. However, if you think about it this does not make sense. Many patients with RA have inflammation in joints for months without any loss of cartilage. Even if the collagenase in the fluid was 98% inhibited the cartilage should be all gone after this time. Uninhibited collagenase will destroy cartilage in an hour or so. So the collagenase must be effectively 100% inhibited. Yet during some episodes of inflammation cartilage can be destroyed in a few days. The only solution to this problem I could find after thinking about it for decades was that type II collagen in live cartilage is totally protected, both from collagenase attack, and in fact from mechanical wear, by a constant extrusion of hyaluronan and small proteoglycans from its surface – much in the way that the skin of fish and dolphins constantly extrudes mucins to lubricate and provide a barrier against attack. However, if the chondrocytes die there will be no extrusion of macromolecules so the surface collagen will be directly available to attack. When I first became interested in joint pathology I looked at hundreds of slides of RA joints in the Path library at St Bart’s Hospital in London and one thing that struck me was that whenever there was cartilage invasion or resorption the underlying chondrocytes were dead (absent). So that made sense.
”
If we apply this to fluoroquinolone toxicity it matches up:
https://www.ncbi.nlm.nih.gov/pubmed/10663387
”
Human chondrocytes cultivated in CFX-supplemented medium (10, 40, 80 and 160 microg/ml) or Mg(2+)-free medium showed decreased ability to adhere to growth support, cell shape changes, and alterations in actin and vimentin cytoskeleton in a concentration dependent manner. Attachment of human chondrocytes to collagen type II coated cover slips was reduced to 90% in CFX group and 75% in Mg(2+)-free group on day 1. This effect even increased after 4 days of culture in the respective medium (32% in CFX and 58% in Mg(2+)-free group). We concluded that Mg(2+) deficiency is exerted via integrins, resulting in decreased ability to attach to extracellular matrix proteins and cytoskeletal changes.
”
Ciprofloxacin starts killing away the chondrocytes, leaving the type II collagen vulnerable to attack by MMP enzymes, over just a few days.
Then we have the studies showing Cipro increases MMP expression:
https://www.ncbi.nlm.nih.gov/pubmed/12428247
https://www.ncbi.nlm.nih.gov/pubmed/20602464
Finally, we also know that Ibuprofen increases MMP expression:
https://www.ncbi.nlm.nih.gov/pubmed/19847888
I think Naproxen and glucocorticoids can also increase them but I don’t have the studies on hand.
So it’s a dual effect and basically a perfect storm.
Can anyone tell me what symptoms they have with the GI tract after being floxed. I’m trying to figure out if I have a GI problem or it’s from being floxed. I tested negative for SIBO, but still no sense of hunger for 17 months, weight loss and constant bleaching even after drinking water. I have also developed rapid gastric emptying for no reason. Any comments would be appreciated as I am struggling with this issue every day.
Just some information. While surfing the web this online lab test site came up. It is a US organization so of little benefit to floxies outside the US.
Here it is: https://www.ultalabtests.com/Quest
It appears to be an online branch of Sonora Quest laboratories.
What impresses me is that they say they will do the RBC magnesium blood test for $29.00 I will be referred to a local Sonora Quest lab to have my blood drawn.
Others appear to want from $49 to $59 for the same test.
As I have said before. Do your own research and make up your own mind.
Just a note. I had my RBC magnesium test done through RequestAtest at a cost of $59.
I was sent to Sonora Quest labs for the blood draw and on the paperwork I see that my blood was sent to a Sonora Quest lab in California for the analysis.
The same Sonora lab that drew my blood for RequestAtest quoted me $145 if I was a walk in paying customer.
Geees!!!! What a rip off the medical community is!!!
Did you gain your weight back? Did you ever loose your sense of hunger? Has that returned?
Since we’re all concerned with damaged mitochondria, this was of interest. Mercola mentions several different potential helpful elements. Btw, I actually got IVs of NAD+. This is also used now for helping to detox those coming off of drugs. It is very expensive, and you have to do so many hours of it at least several days in a row. Did it do anything? No way to tell really. But I would try some of these other things. https://products.mercola.com/mitomix-ketogenic-blend/?utm_source=dnl&utm_medium=email&utm_content=dpe&utm_campaign=20180528Z1_UCM&et_cid=DM210476&et_rid=317854770
Thank you Don, that is what I have discovered. Keep my mind busy, I have difficulty sitting still so I am always moving, cleaning house rearranging things, hence no weight gain. Now trying to read or watch movies. My body just can’t sit still, and when I do, your right, my illness is the main focus. Thinking of going back to work part time to keep my mind busy. Wondering if I can do it. Thanks for your input.
Yes, I am doing much better than you were. I don’t know how your doing it. It’s unimaginable! It has been 17 months for me, my hair fell out too, my food sensativities have improved and the ringing in my ears comes and goes now. Gut issues and head pressure are my biggest problems. Fortunately for me I only have dry eye now. In the beginning my right eye always filled up with blood for no reason. It’s been a year since this occurred. My extremities are always stiff. It I keep moving. I could not sleep either, MD gave me remeron 7.5mg for sleep and weight gain. It works some, but I would like to get off it, when I try too much anxiety. I recently found a ND to work with, he has given me CBD oil to wean myself off the remeron. He has 3 others like me so he is very interested in helping. I have had 2 IVs so far and have felt better after each one. Going for another tomorrow. I think I’m on the right tract now. I live in Tampa, Florida and would like to meet up with someone in my area so we could support each other. Thank you all for being there for me.
Tomorrow I will get a Meyers IV with a push of Glutathione. I had it once before and the next day a white creamy liquid was on my lips like lipstick. I figured that was the poison coming out of me as my lips have been so very dry. See what tomorrow brings. I will try to wean myself from the remeron once I get a healthy weight. Your plan is good. ND gave me CBD oil to use at night. Doesnt seem to do anything. I’m surprised they would give you such a chemical for your body. I do not smoke, I think they give that for people trying to quit smoking to reduce anxiety. It doesnt touch the relentless anxiety this disease has.
What kind of oregano oil do you use and how do you use it. I’ve read a little about it, but not sure what to use and how. Any info would be appreciated ????
What is a carrier oil? Is it once a day, everyday?
When do you take it besides illness like the flu?
Hey Guys. Any info on Lorazepam (ativan) do you think that taking it for a couple of days would be hazardous?
My doctor gave it to me in the beginning, to take 0.5 mg three times a day. It really helped me with the relentless anxiety. Now that the anxiety has subsided some, I only take it once a day in the morning, which is my worst time. I can’t get off of it. I’m now trying to wean myself off slowing, but it’s difficult. But it sure helped when I needed it. How bad is your anxiety?
Many people on Floxie Hope for years have had a lot of problems using those kinds of pharmaceuticals, Andrea. You might be sensitive to them and then it’s too late.
I try to remember that anxiety and insomnia, which is my body crying about what happened, are also energy. You can redirect that energy. I never think suppressing is a good thing. After all the work with diet and the other modalities, it’s not worth the risk to take any more pharma.
Try any Youtube meditation. Meditating can be more restful than sleep. It can be very comforting as well.
Interesting article about sweating out toxins:
https://articles.mercola.com/sites/articles/archive/2018/05/30/sweating-out-toxins.aspx?utm_source=dnl&utm_medium=email&utm_content=art2&utm_campaign=20180530Z2_NB&et_cid=DM210469&et_rid=319665656
Thanks everyone for the infos and opinions. I was thinking about Lorazepam because I hate to fly, and since I have to go to London I was thinking about something to help me with that issue. Anyway, I remember using it in the past, when I had to fly, and it never gave me much problems, but as Daniela pointed out, it’s probably not worth the risk. I don’t know…