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
Jen
9 years ago
Catherine, have you tried making bone broth soup?? it’s supposed to be very helpful with people who have leaking gut among other things.
Jen
9 years ago
Melanie, I know you said that you can’t take any supplements without having bad reactions but what about with natural whole foods like Douglas as Lisa mentioned. Maybe bone broth soup like I suggested to Catherine?
Jen, that’s great your walking has improved! I don’t know if my pain is worsening cuz of the weather, it never had before. My pain never seems to be in one particular area, it comes and goes. But mostly its in my heels, sides of ankles and tightness in calves.my hands and fingers are sore too, but so far I can still use them for everything. I wish there was some magical supplement to stop any more damage from being done. Oh, I did order mitoQ. Ruth has had great results with it and she recovered in less than a year:)
Jen
9 years ago
Melanie, here is one version.
Basic Bone Broth Recipe
* Depending upon your preference, take the carcass of a chicken or go out and buy the MARROW BONES and Knuckle Bones of Beef from the butcher. Everything MUST be Organic, Free Range, No Hormones, etc.
* Put them in a large stew pot or crock pot with water to cover at least 2 inches over the top of the contents.
* Bring to a boil.
* Turn down to simmer and leave it alone.
* Cook for 12 to 24 hours for Chicken Broth OR
24-72 hours for Beef Bone Broth.
* Pull all of the large pieces out with a slotted spoon, then strain all through a fine mesh strainer, a coffee filter or cheesecloth. Discard the chunks, compost them or feed them to a pet.
* Refrigerate for several hours and skim off the fat when it is cool
*You can refrigerate the broth for several days or freeze for several months. Freeze the broth in ice cube trays then transfer to zip loc bag for ease of use.
* Season as desired and use to make soups and stews, Miso Soup or use as a base to make rice or any other grain that requires water to make.
I go to a local farmer’s market and purchase grass fed/organic marrow bones and knuckle bones. I’ve also read somewhere that a little bit of apple cider vinegar helps to release most nutrients/minerals from the bones. I use like 1/2 a lemon from my backyard instead of the vinegar.
You can research bone broth soup on the internet as well. There are tons of information on it.
Jen
9 years ago
Melanie, I use about 5 pounds of bones and about 12 quarts of water.
Jen
9 years ago
Michael, my CRP level was <0.10 on 9/19/14 and <.02 on 10/30/14.
Jen
9 years ago
Michael, glad to hear that ur improving. How long have you been floxed?
Daniela
9 years ago
To C Pomfrett, I made a huge improvement when I cut out the rice in addition to grain, not just gluten. The digestive problems were gone and leaky gut seems to be key with me. I eat sweet potato, banana, plantain, soaked and softened almonds, avocado in place of any rice, noodles, grains. The first three years rice and yoghurt were my staples, and I was not improving. The very next day after I had plate of greens and a piece of meat on top and absolutely no diary or grains, my brain fog was gone. Soon after, the anxiety just dissolved, I literally felt it break up, like ice shattering and melting.
After 1 year with this new diet, I started getting obvious tendon issues and I think that was exposure to antibiotics in meat — I had been vegetarian all my life and now was eating meat, but didn’t know about all the antibiotics in meat. Do you know they inject even the eggs for organic chicken with antibiotics? The regulation for organic only starts after two days of life so they inject them on day 1.
I found that I do pretty well on cashews and almonds if they are soaked, and I am going to work on long soaking/cooking of certain beans, re Specific Carb Diet.
Anyhow, I am alone with a child and of course started all this with an illness. My ex actually said, No one told me I had to stay with someone who is sick (LOL). So if I can do it, you can too! I am not the person I was, but strangely a lot of new talents have emerged. Being positive doesn’t mean pardoning the pharma industry — it’s about making the best of what you have. Living well is the best revenge :)))
Daniela, I liked your comment above, that you are 5 years recovering and alone w a child. I am only one month floxed, and am a single mom of a 4 year old. I have no idea what’s going to happen to me…..but I hope my health doesn’t deteriorate to the point I can no longer take care of her. So far, I can still function normally, just way less energy and not as happy as I once was. I too am on the specific carb diet, and giving up coffee and alcohol is the hardest! I’m glad you experienced some recovery. Did you ever lose the ability to walk? That’s what I’m afraid of the most. I was standing over the stove making dinner tonight and my calves, ankles hurt so bad now: ( I hope this doesn’t get progressively worse !!
Jen
9 years ago
Tricia, have you tried icing the areas where you feel pain? maybe massaging them so loosen up the tightness? Sometimes massaging hurts my fingers and hand but it does make the calves, ankles and feet feel a little better.
Jen, no I haven’t tried icing but I definitely will. I got an amazing foot reflexology tonight. That took care of my foot pain but my calves and ankles are still sore. I feel like the tinman from wizard of oz before he got oiled:( thanks for the tip:) !
Jen
9 years ago
Tricia, you’re very welcome. I hope the icing works for you as it does for me. I’m glad to hear your feet are feeling better. 🙂 Can you describe the pain? I’m trying to compare it to mine. Hopefully through trial and error you can find the “oil” that works for you like the tinman.
I hope so too:)it seems like just from rrading most of these recovery stories, time is the only thing that really heals. Yes my foot pain, which is mostly in my heels and toes…. feels like what would be arthritis. Just an achy, dull feeling that radiates upward to my ankles and calves. Do your arms and hands hurt? Mine really do! On Friday i had no joint pain and felt almost 100percent normal. Now I feel like last 2 days I’m back to square one. So yes, definitely one foot forward, two steps back
Jen
9 years ago
Tricia, yes time seems to be a big factor but it scares me some of the relapses etc. My pain is like yours too but I also have stinging like sensation as well…in my joints and other areas possible tendon? my fingers, wrist, inner elbow hurst as well. My knees sometimes get that stinging electric shock like feelings. The first month I also had severe back, upper shoulder, neck pain but that’s gone. In the last few days I’ve noticed my ears feel really hot…inside as well where I feel like I may have a fever but when I check my temperature it’s pretty normal. Sigh… But Tricia, if you had a really good day on Friday that seems like a really good sign. You start with one good day and it turns into two and so on! Keeping my fingers crossed for you! 🙂
Thanks Jen…I’m keeping my fingers crossed for you also!! Just today I noticed tingly sensations too in my legs, hands and feet. I’m also a lot more fatigued then I was before I was floxed. What terrifies me is some people experience loss of hair, teeth, vision, and skin problems from loss of collagen. I can’t even imagine what I’d do if that happened !! I’m trying to just take one day at a time…
Jen
9 years ago
Patience is such a difficult thing…but yes, one day at a time…
Jen
9 years ago
Had a fitful night…woke up in the middle of the night with really bad pain in left knee. In hindsight I regret taking the medrol pack and the second round of prednisone which I stopped after 9 days. About 5 wks after this whole nightmare started I was seeing slow improvement but I believed the rheumatologist knew what he was talking about when he told me I had “viral arthritis”… Doctors don’t know everything! I’m really afraid that taking the steroids has further damaged my condition. Why didn’t I listen to my body? It was healing…very slowly but surely. I had a husband telling my I was trying to be my own doctor through my internet findings…ironically a father who is a retired pharmacist who thinks medicine is a cure for everything…trusted doctors who are supposed to be experts… sorry for this rant…just needed a safe place to vent.
Angie
9 years ago
Hello Lisa and everyone.
Lisa and all have anyone taken iron supplementation without any problems. I am anemic and have been way before being flocked. My Doc prescribed Integra Plus capsules. It consists of iron folic acid vitamin b complex and biotin. I’m trying to get hemoglobin and hemocrit up.
Catherine, have you tried making bone broth soup?? it’s supposed to be very helpful with people who have leaking gut among other things.
Melanie, I know you said that you can’t take any supplements without having bad reactions but what about with natural whole foods like Douglas as Lisa mentioned. Maybe bone broth soup like I suggested to Catherine?
Jen, that’s great your walking has improved! I don’t know if my pain is worsening cuz of the weather, it never had before. My pain never seems to be in one particular area, it comes and goes. But mostly its in my heels, sides of ankles and tightness in calves.my hands and fingers are sore too, but so far I can still use them for everything. I wish there was some magical supplement to stop any more damage from being done. Oh, I did order mitoQ. Ruth has had great results with it and she recovered in less than a year:)
Melanie, here is one version.
Basic Bone Broth Recipe
* Depending upon your preference, take the carcass of a chicken or go out and buy the MARROW BONES and Knuckle Bones of Beef from the butcher. Everything MUST be Organic, Free Range, No Hormones, etc.
* Put them in a large stew pot or crock pot with water to cover at least 2 inches over the top of the contents.
* Bring to a boil.
* Turn down to simmer and leave it alone.
* Cook for 12 to 24 hours for Chicken Broth OR
24-72 hours for Beef Bone Broth.
* Pull all of the large pieces out with a slotted spoon, then strain all through a fine mesh strainer, a coffee filter or cheesecloth. Discard the chunks, compost them or feed them to a pet.
* Refrigerate for several hours and skim off the fat when it is cool
*You can refrigerate the broth for several days or freeze for several months. Freeze the broth in ice cube trays then transfer to zip loc bag for ease of use.
* Season as desired and use to make soups and stews, Miso Soup or use as a base to make rice or any other grain that requires water to make.
Read more: http://www.easy-immune-health.com/essential-bone-broth.html#ixzz3KlBzM0jk
I go to a local farmer’s market and purchase grass fed/organic marrow bones and knuckle bones. I’ve also read somewhere that a little bit of apple cider vinegar helps to release most nutrients/minerals from the bones. I use like 1/2 a lemon from my backyard instead of the vinegar.
You can research bone broth soup on the internet as well. There are tons of information on it.
Melanie, I use about 5 pounds of bones and about 12 quarts of water.
Michael, my CRP level was <0.10 on 9/19/14 and <.02 on 10/30/14.
Michael, glad to hear that ur improving. How long have you been floxed?
To C Pomfrett, I made a huge improvement when I cut out the rice in addition to grain, not just gluten. The digestive problems were gone and leaky gut seems to be key with me. I eat sweet potato, banana, plantain, soaked and softened almonds, avocado in place of any rice, noodles, grains. The first three years rice and yoghurt were my staples, and I was not improving. The very next day after I had plate of greens and a piece of meat on top and absolutely no diary or grains, my brain fog was gone. Soon after, the anxiety just dissolved, I literally felt it break up, like ice shattering and melting.
After 1 year with this new diet, I started getting obvious tendon issues and I think that was exposure to antibiotics in meat — I had been vegetarian all my life and now was eating meat, but didn’t know about all the antibiotics in meat. Do you know they inject even the eggs for organic chicken with antibiotics? The regulation for organic only starts after two days of life so they inject them on day 1.
I found that I do pretty well on cashews and almonds if they are soaked, and I am going to work on long soaking/cooking of certain beans, re Specific Carb Diet.
Another thing I realised was mal de débarquement syndrome, which is rocking vertigo. If I drive I feel better, but when I stop I feel worse. If you have that also, you might want to avoid driving/riding in a car as much as possible. It’s like a backlash, and it increases that horrible feeling of depersonalisation, especially in a grocery store with rows and shelves.
Anyhow, I am alone with a child and of course started all this with an illness. My ex actually said, No one told me I had to stay with someone who is sick (LOL). So if I can do it, you can too! I am not the person I was, but strangely a lot of new talents have emerged. Being positive doesn’t mean pardoning the pharma industry — it’s about making the best of what you have. Living well is the best revenge :)))
Daniela, I liked your comment above, that you are 5 years recovering and alone w a child. I am only one month floxed, and am a single mom of a 4 year old. I have no idea what’s going to happen to me…..but I hope my health doesn’t deteriorate to the point I can no longer take care of her. So far, I can still function normally, just way less energy and not as happy as I once was. I too am on the specific carb diet, and giving up coffee and alcohol is the hardest! I’m glad you experienced some recovery. Did you ever lose the ability to walk? That’s what I’m afraid of the most. I was standing over the stove making dinner tonight and my calves, ankles hurt so bad now: ( I hope this doesn’t get progressively worse !!
Tricia, have you tried icing the areas where you feel pain? maybe massaging them so loosen up the tightness? Sometimes massaging hurts my fingers and hand but it does make the calves, ankles and feet feel a little better.
Jen, no I haven’t tried icing but I definitely will. I got an amazing foot reflexology tonight. That took care of my foot pain but my calves and ankles are still sore. I feel like the tinman from wizard of oz before he got oiled:( thanks for the tip:) !
Tricia, you’re very welcome. I hope the icing works for you as it does for me. I’m glad to hear your feet are feeling better. 🙂 Can you describe the pain? I’m trying to compare it to mine. Hopefully through trial and error you can find the “oil” that works for you like the tinman.
Melanie, bon appetit!
I hope so too:)it seems like just from rrading most of these recovery stories, time is the only thing that really heals. Yes my foot pain, which is mostly in my heels and toes…. feels like what would be arthritis. Just an achy, dull feeling that radiates upward to my ankles and calves. Do your arms and hands hurt? Mine really do! On Friday i had no joint pain and felt almost 100percent normal. Now I feel like last 2 days I’m back to square one. So yes, definitely one foot forward, two steps back
Tricia, yes time seems to be a big factor but it scares me some of the relapses etc. My pain is like yours too but I also have stinging like sensation as well…in my joints and other areas possible tendon? my fingers, wrist, inner elbow hurst as well. My knees sometimes get that stinging electric shock like feelings. The first month I also had severe back, upper shoulder, neck pain but that’s gone. In the last few days I’ve noticed my ears feel really hot…inside as well where I feel like I may have a fever but when I check my temperature it’s pretty normal. Sigh… But Tricia, if you had a really good day on Friday that seems like a really good sign. You start with one good day and it turns into two and so on! Keeping my fingers crossed for you! 🙂
Thanks Jen…I’m keeping my fingers crossed for you also!! Just today I noticed tingly sensations too in my legs, hands and feet. I’m also a lot more fatigued then I was before I was floxed. What terrifies me is some people experience loss of hair, teeth, vision, and skin problems from loss of collagen. I can’t even imagine what I’d do if that happened !! I’m trying to just take one day at a time…
Patience is such a difficult thing…but yes, one day at a time…
Had a fitful night…woke up in the middle of the night with really bad pain in left knee. In hindsight I regret taking the medrol pack and the second round of prednisone which I stopped after 9 days. About 5 wks after this whole nightmare started I was seeing slow improvement but I believed the rheumatologist knew what he was talking about when he told me I had “viral arthritis”… Doctors don’t know everything! I’m really afraid that taking the steroids has further damaged my condition. Why didn’t I listen to my body? It was healing…very slowly but surely. I had a husband telling my I was trying to be my own doctor through my internet findings…ironically a father who is a retired pharmacist who thinks medicine is a cure for everything…trusted doctors who are supposed to be experts… sorry for this rant…just needed a safe place to vent.
Hello Lisa and everyone.
Lisa and all have anyone taken iron supplementation without any problems. I am anemic and have been way before being flocked. My Doc prescribed Integra Plus capsules. It consists of iron folic acid vitamin b complex and biotin. I’m trying to get hemoglobin and hemocrit up.
http://www.dailymail.co.uk/health/article-2858968/Teenager-skin-burnt-inside-Girl-19-left-fighting-life-suffering-horrific-reaction-epilepsy-medication-birthday.html