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Dave
9 years ago
Hi what has worked for people here with nerve pain?
MK
9 years ago
Hi everyone. It’s been 2 weeks and my symptoms have stayed the same, not better or worse. How do you deal with the anxiety? Every morning I wake up terrified that it will be the day that things get a lot worse. If that’s going to happen I wish I could just enjoy this time when my symptoms are simply “annoying” and not really affecting how I live. But I can’t think about anything else. I already had anxiety and depression before this.
Jason
9 years ago
Hi Dave, Josie & MK. Please click the “Older comments” button at bottom of page and search through and read the last 4 to 6 pages or so and you will see LOTS of advice on all these issues and much much more. To find something specific just use the web browsers “search page” feature and for example search each page for “anxiety” or “nerve” or “PN” or “balance” to find all the discussions directly relating to that on each page. I highly recommend reading the full pages though when you get a chance, there is a lot of advice on a lot of things shared and also try to read some of the stories on this site for even more suggestions.
Here is one excellent link for Anxiety with a lot of great tips on how to deal with it:
Nevermind if you have GAD or not, these are great for anxiety of all types in my opinion. Rene will likely come along with more suggestions for all, and again if not for anxiety as she would point out you need to avoid all things MSG, Glutamate and the plethora of hidden sources as well, do some googling on this to find all the names it hides under and avoid. This drug damages Gabba receptors which throws off Gaba/Glutamate balance which regulate a great many things including anxiety, there are a bunch of natural supplements that can help with this balance and with anxiety, please see older comments (a couple of top of my head are Gaba itself, L-Theanine, Bacopa, Valerian Root and/or Melatonin before bed, Also with anxiety you need to avoid caffeine like the plague, yes chocolate and other sources too, and limit sugar.
One other thing, it sounds cliche and it’s very easy to say rather than do but its just very true and critical that “worrying” about things with anxiety, will only make the anxiety worse (I know I suffered anxiety myself for a few years). Focus on and read positive stories of healing, concrete things you CAN do and do not bother with the worse case scenario type posts or thinking, you can only do what can, just make sure you are doing that, anything else is out of your control you just can not worry about it. As long as you are being proactive (which in this case means you have a lot of reading to do) you are doing all you can. If you have faith all the better, as faith is a huge way to deal with fear and fear=anxiety, so strengthen your faith if you have it, pray, and along with being proactive put yourself in his care. Whether someone has faith or not, the Serenity prayer (which can be adapted for someone not having faith) is an extremely value tool for anxiety and much more. “God grant me the serenity to accept the things I cannot change; courage to change the things I can; and wisdom to know the difference.” This alone can help heal anxiety for many people, in the case of Floxies just make sure you are doing what you can.
I’ve posted a few times on the critical importance of diet on this page and have not mentioned WATER, of which the Human Adult Body is about 60-70% water, so again obviously of critical importance. The link above only sheds light on one reason not to drink tap, bottled, or not properly heavily filtered water. Along with drugs, there is a pile of chemicals “purposely” put in the water, nevermind all those there are also there and NOT reported on from chem trails, mining, industry in general, acid rain, oh the list goes on huge.
So even if someone’s water is not Fluorinated (which to me and in my opinion to a Floxie is the worst one since we’ve been poisoned with Fluoride by taking Cipro drug), there are numerous other toxic chemicals in your water that you REALLY should not be ingesting. Here is the list I acquired from my own sad water supply in the City of Toronto (Google these to see just how nasty they are, I have not drank tap water for 20 years as I found out about this back then):
Aluminum Sulphate, Chlorine Gas, Citric Acid, Liquid Oxygen (yay something good), Sodium Bisulfite, Sodium Hydroxide, Sodium Hypoclorite, Sulphic Acid, Anionic polymer, Cationic Polymer, and of course Hydrofluoric acid. Further down the line people have it even worse as they Chloraminate the water by adding Ammonia (extra nasty)
Now in regards to the Fluoridated water specifically which of course makes it extra toxic:
“Fluorosilicic acid (H2SiF6) is commonly used for water fluoridation. This is a toxic liquid by-product, acquired by scrubbing the chimney stacks of phosphate fertilizer manufacture. Hydrofluoric acid is a contact poison with greater hazards than many strong acids. It reacts with calcium and magnesium in the blood. Its more toxic than lead and just less so than Arsenic.” This drug robs your body of Magnesium, the Fluoride in the drug is likely the main reason.
Hopefully someone does not need more convincing than that on the importance of Water. How much can ingesting chemicals, drugs, fluoride and God knows what else on a daily basis, where you body is 65% Water, affect your health? How much can it affect a Floxie, especially if your water has the God forsaken Fluoride toxic waste in it? (I am of the opinion a Floxie’s journey can definitely be lengthened and have suffered my own relapses due to Fluoride in water). Do you really want to find out and chance it?
So what to do then? In my opinion from a lot of research someone should be drinking either Reverse Osmosis Water or Mineral Water from a confirmed good source. If you go the RO route, know that RO water is very acidic (meaning on the acidic/alkaline scale) and completely void of almost everything, which includes good minerals. What I do, and what I recommend is some minerals should be added back into the water before drinking, this kills 2 birds, the water becomes balanced on the alkaline scale (or you can tip it to alkaline) and you are now getting some important minerals as well, which is how water used to be for thousands of years, mineral-rich and a lot more pure. You can easily and cheaply make Magnesium Bicarbonate Water as well, which for a Floxie has extra benefits, I do this and then add some Potassium and others to it (search older pages for my posts how easily make this) There is some who swear drinking RO water can actually strip your body of minerals (and just as many who oppose the theory), I am unsure if this has ever been verified by a valid study but there is some logic in the theory.
tricia
9 years ago
I just happened to read through “flouroquinolone wall of pain victim and survivors stories” , although most of the stories were pretty gloomy. Does anyone happen to know if any of those particular folks who were having a hard time eventually improved???
Sarah
9 years ago
I think I might have a UTI. Last time, I was prescribed Cipro. I took a pill, did my research and decided to lie that I’d had a bad reaction to it, and they switched me to something else though I don’t remember what it was. I’m doing fine now, but I’m not willing to take any chances. Anyway, do any of you have experience with safe antibiotics for UTI? I’d normally let it run its course, but it’s been almost a week and I’m feeling crappier and crappier. Last thing I need is to end up in the hospital with a kidney infection and get a fluoroquinolone IV. Bleh. I know Bactrim is popular but I’ve also read some pretty awful things about that one, though if it’s all I have I’ll take it.
Linda Livingston
9 years ago
Jason—I love the blacklist although sometimes I really wish they would tone down the gore factor. James spader is amazing. But one evening they showed a young man walking (I believe on a college campus) with someone following behind. He suddenly stopped, started convulsing, blood came pouring out of his eyes, and all I could think was “he got floxed!”
J
9 years ago
Question for anyone: I have been supplementing with magnesium (all kinds but mainly ionic) and ancient minerals spray for 18 months now and my levels are still too low. Anyone experience this? Also was taking sublingual methyl B12 and apparently my B12 is too high now which my Dr says is unusual as most excrete B12. (I have 1 copy mthfr and methylation issues we are addressing. My folate is too high which he says means I’m storing it and not using it) ) I have dangetously low ferritin as well (5) which I have read can lead to pain – but I have NO fatigue. My insomnia is better and sleep us back to normal for me (was never great sleeper!). The good news is the other numbers (liver , etc.) have all normalized again . My Dr does not do infusions and so I’m wondering if that is necessary at this point? Did anyone experience inability to get magnesium up and/or b12 and/or ferritin issues? I have improved tremendously except for pain twitching and tingling in legs and feet . Also my Dr uses something called Field Control Therapy. Has anyone ever heard of this? It’s odd to say the least but so is half the stuff I’ve tried! I am using the rebuilder for nerves but so far not sure it’s helping . Also some Active Release massage in legs which actually helps for a few minutes . I just want this last piece to be gone!!
Jason
9 years ago
Hi J. Not sure on the B12 and Folate issues, I am just getting into this end of things.
If you are low on MAG, see my post about 20 up or so on Magnesium Bicarbonate, which helps the MAG get directly into the cells. How much Oil are you using also? You are using Oil and not Lotion correct? The “twitching” and pain (I had no nerve tingling or pain thankfully, my pain was in tendons and muscles) in legs were two of my worst symptoms and the MAG is what helped me the most, that and actually detoxing the junk out (through exercise, sauna, massage and supplements mainly). I am now pain, symptom and finally it seems damage free after just 6 months, yesterday I had a very aggressive deep tissue massage in legs, this gave me a relapse before however now I have no effect, the junk is gone. I was taking many different forms of MAG as well, that without the Oil & Water, were adding up to 500-600 daily IIRC. You can work up to a LOT of sprays if necessary, which for you it sounds like it is, Rene is kind of the expert on this here, but I was using like 20 sprays on each leg and even 5 on each arm when things were bad (sometimes I would wake up more tired/slightly dizzy if I used a ton).
Are you Anemic? My wife is, and her Ferritin has also been dangerously low for way too long (she was not supplementing, big mistake, Doctor’s did not advise her properly) She found out she basically needs to supplement daily, and has to take a strong iron on empty stomach with orange juice to help with absorption. Low iron is extremely hard on the entire body and something that needs to be rectified asap with anyone that has this condition (organs are starved for oxygen, etc).
Jan
9 years ago
SM, How are you doing? wondered if the vitamin C IV was helping you?
F
9 years ago
Anybody hear of Lark Lands Phd. A nutrition expert that has worked mostly with the HIV community to develop diet and supplement protocols to improve quality of life. She has a neuropathy protocol developed for drug induced Neuropathy and mitochondrial damage from the HIV drugs. They seem to have similar effects of oxidative stress and mitochondrial damage as the FQ’s. I am doing a telephone conference with her this Friday.
F
9 years ago
She has worked with clients with FQ toxicity before with some success. She VERY familiar with FQ toxicity Syndrome.
J
9 years ago
Yes F please post. Thanks !!
SM
9 years ago
Today I went for my first massage in 17 days after going weekly since early
March. She just works on my lower body and has discovered more tender spots than I ever knew I had. Slowly, she has worked out a lot of discomfort. Like I said, I’ve been off 17 days and today was rough. She said my feet and calf muscles felt crunchy. And it more more than usual too. So that gets me to wondering, what’s going on in my body that allows it to tighten up so quickly? Magnesium seems like a strong candidate. Low magnesium in the cells (which I have) can cause muscles to tighten and neves to misfire. Additionally, the constant muse tightening may even compress vessels and nerves and further worsen things. Crazy thing is I’ve been supplementing mag for 5 months now- orally and transdrmally. Thoughts?
rich
9 years ago
one of my last symptoms is twitching calves… sitting in chair they just pump all day long
rich
9 years ago
fantastic info …will have a good few reads
F
9 years ago
You guys are killin’ me here! Do I have to get a Phd in microbiology to recover from this nightmare?
F
9 years ago
Thank you Linda, Jason and SM. I actually do realize this. I am just still reeling from how much my life has been changed from this. I did find a caring ND who was not familiar with floxing but totally open to it and is wanting to rule out all the other possible causes of my PN. I have had a urinalysis for heavy metals.and we are working on a good detox program. I actually have a background in Health care and am all too familiar with the shortcomings of the system.The Canadian system, that is. So Jason you know what I’m talking about.
F
9 years ago
Thanks guys, Nerve damage does heal very slowly if it heals at all. That’s a bitter pill. I have just finished a course of IV Glutathione, twice a week for a month. Not sure if it did anything. At least the PN seems to have stopped progressing…I think?
Daniela
9 years ago
Has anyone who has been floxed for many years experienced a reverse order of healing?
Hi what has worked for people here with nerve pain?
Hi everyone. It’s been 2 weeks and my symptoms have stayed the same, not better or worse. How do you deal with the anxiety? Every morning I wake up terrified that it will be the day that things get a lot worse. If that’s going to happen I wish I could just enjoy this time when my symptoms are simply “annoying” and not really affecting how I live. But I can’t think about anything else. I already had anxiety and depression before this.
Hi Dave, Josie & MK. Please click the “Older comments” button at bottom of page and search through and read the last 4 to 6 pages or so and you will see LOTS of advice on all these issues and much much more. To find something specific just use the web browsers “search page” feature and for example search each page for “anxiety” or “nerve” or “PN” or “balance” to find all the discussions directly relating to that on each page. I highly recommend reading the full pages though when you get a chance, there is a lot of advice on a lot of things shared and also try to read some of the stories on this site for even more suggestions.
Here is one excellent link for Anxiety with a lot of great tips on how to deal with it:
http://www.helpguide.org/articles/anxiety/generalized-anxiety-disorder-gad.htm
Nevermind if you have GAD or not, these are great for anxiety of all types in my opinion. Rene will likely come along with more suggestions for all, and again if not for anxiety as she would point out you need to avoid all things MSG, Glutamate and the plethora of hidden sources as well, do some googling on this to find all the names it hides under and avoid. This drug damages Gabba receptors which throws off Gaba/Glutamate balance which regulate a great many things including anxiety, there are a bunch of natural supplements that can help with this balance and with anxiety, please see older comments (a couple of top of my head are Gaba itself, L-Theanine, Bacopa, Valerian Root and/or Melatonin before bed, Also with anxiety you need to avoid caffeine like the plague, yes chocolate and other sources too, and limit sugar.
One other thing, it sounds cliche and it’s very easy to say rather than do but its just very true and critical that “worrying” about things with anxiety, will only make the anxiety worse (I know I suffered anxiety myself for a few years). Focus on and read positive stories of healing, concrete things you CAN do and do not bother with the worse case scenario type posts or thinking, you can only do what can, just make sure you are doing that, anything else is out of your control you just can not worry about it. As long as you are being proactive (which in this case means you have a lot of reading to do) you are doing all you can. If you have faith all the better, as faith is a huge way to deal with fear and fear=anxiety, so strengthen your faith if you have it, pray, and along with being proactive put yourself in his care. Whether someone has faith or not, the Serenity prayer (which can be adapted for someone not having faith) is an extremely value tool for anxiety and much more. “God grant me the serenity to accept the things I cannot change; courage to change the things I can; and wisdom to know the difference.” This alone can help heal anxiety for many people, in the case of Floxies just make sure you are doing what you can.
https://ca.news.yahoo.com/blogs/dailybrew/are-there-drugs-in-our-drinking-water-new-study-215824275.html
I’ve posted a few times on the critical importance of diet on this page and have not mentioned WATER, of which the Human Adult Body is about 60-70% water, so again obviously of critical importance. The link above only sheds light on one reason not to drink tap, bottled, or not properly heavily filtered water. Along with drugs, there is a pile of chemicals “purposely” put in the water, nevermind all those there are also there and NOT reported on from chem trails, mining, industry in general, acid rain, oh the list goes on huge.
So even if someone’s water is not Fluorinated (which to me and in my opinion to a Floxie is the worst one since we’ve been poisoned with Fluoride by taking Cipro drug), there are numerous other toxic chemicals in your water that you REALLY should not be ingesting. Here is the list I acquired from my own sad water supply in the City of Toronto (Google these to see just how nasty they are, I have not drank tap water for 20 years as I found out about this back then):
Aluminum Sulphate, Chlorine Gas, Citric Acid, Liquid Oxygen (yay something good), Sodium Bisulfite, Sodium Hydroxide, Sodium Hypoclorite, Sulphic Acid, Anionic polymer, Cationic Polymer, and of course Hydrofluoric acid. Further down the line people have it even worse as they Chloraminate the water by adding Ammonia (extra nasty)
Now in regards to the Fluoridated water specifically which of course makes it extra toxic:
“Fluorosilicic acid (H2SiF6) is commonly used for water fluoridation. This is a toxic liquid by-product, acquired by scrubbing the chimney stacks of phosphate fertilizer manufacture. Hydrofluoric acid is a contact poison with greater hazards than many strong acids. It reacts with calcium and magnesium in the blood. Its more toxic than lead and just less so than Arsenic.” This drug robs your body of Magnesium, the Fluoride in the drug is likely the main reason.
Hopefully someone does not need more convincing than that on the importance of Water. How much can ingesting chemicals, drugs, fluoride and God knows what else on a daily basis, where you body is 65% Water, affect your health? How much can it affect a Floxie, especially if your water has the God forsaken Fluoride toxic waste in it? (I am of the opinion a Floxie’s journey can definitely be lengthened and have suffered my own relapses due to Fluoride in water). Do you really want to find out and chance it?
So what to do then? In my opinion from a lot of research someone should be drinking either Reverse Osmosis Water or Mineral Water from a confirmed good source. If you go the RO route, know that RO water is very acidic (meaning on the acidic/alkaline scale) and completely void of almost everything, which includes good minerals. What I do, and what I recommend is some minerals should be added back into the water before drinking, this kills 2 birds, the water becomes balanced on the alkaline scale (or you can tip it to alkaline) and you are now getting some important minerals as well, which is how water used to be for thousands of years, mineral-rich and a lot more pure. You can easily and cheaply make Magnesium Bicarbonate Water as well, which for a Floxie has extra benefits, I do this and then add some Potassium and others to it (search older pages for my posts how easily make this) There is some who swear drinking RO water can actually strip your body of minerals (and just as many who oppose the theory), I am unsure if this has ever been verified by a valid study but there is some logic in the theory.
I just happened to read through “flouroquinolone wall of pain victim and survivors stories” , although most of the stories were pretty gloomy. Does anyone happen to know if any of those particular folks who were having a hard time eventually improved???
I think I might have a UTI. Last time, I was prescribed Cipro. I took a pill, did my research and decided to lie that I’d had a bad reaction to it, and they switched me to something else though I don’t remember what it was. I’m doing fine now, but I’m not willing to take any chances. Anyway, do any of you have experience with safe antibiotics for UTI? I’d normally let it run its course, but it’s been almost a week and I’m feeling crappier and crappier. Last thing I need is to end up in the hospital with a kidney infection and get a fluoroquinolone IV. Bleh. I know Bactrim is popular but I’ve also read some pretty awful things about that one, though if it’s all I have I’ll take it.
Jason—I love the blacklist although sometimes I really wish they would tone down the gore factor. James spader is amazing. But one evening they showed a young man walking (I believe on a college campus) with someone following behind. He suddenly stopped, started convulsing, blood came pouring out of his eyes, and all I could think was “he got floxed!”
Question for anyone: I have been supplementing with magnesium (all kinds but mainly ionic) and ancient minerals spray for 18 months now and my levels are still too low. Anyone experience this? Also was taking sublingual methyl B12 and apparently my B12 is too high now which my Dr says is unusual as most excrete B12. (I have 1 copy mthfr and methylation issues we are addressing. My folate is too high which he says means I’m storing it and not using it) ) I have dangetously low ferritin as well (5) which I have read can lead to pain – but I have NO fatigue. My insomnia is better and sleep us back to normal for me (was never great sleeper!). The good news is the other numbers (liver , etc.) have all normalized again . My Dr does not do infusions and so I’m wondering if that is necessary at this point? Did anyone experience inability to get magnesium up and/or b12 and/or ferritin issues? I have improved tremendously except for pain twitching and tingling in legs and feet . Also my Dr uses something called Field Control Therapy. Has anyone ever heard of this? It’s odd to say the least but so is half the stuff I’ve tried! I am using the rebuilder for nerves but so far not sure it’s helping . Also some Active Release massage in legs which actually helps for a few minutes . I just want this last piece to be gone!!
Hi J. Not sure on the B12 and Folate issues, I am just getting into this end of things.
If you are low on MAG, see my post about 20 up or so on Magnesium Bicarbonate, which helps the MAG get directly into the cells. How much Oil are you using also? You are using Oil and not Lotion correct? The “twitching” and pain (I had no nerve tingling or pain thankfully, my pain was in tendons and muscles) in legs were two of my worst symptoms and the MAG is what helped me the most, that and actually detoxing the junk out (through exercise, sauna, massage and supplements mainly). I am now pain, symptom and finally it seems damage free after just 6 months, yesterday I had a very aggressive deep tissue massage in legs, this gave me a relapse before however now I have no effect, the junk is gone. I was taking many different forms of MAG as well, that without the Oil & Water, were adding up to 500-600 daily IIRC. You can work up to a LOT of sprays if necessary, which for you it sounds like it is, Rene is kind of the expert on this here, but I was using like 20 sprays on each leg and even 5 on each arm when things were bad (sometimes I would wake up more tired/slightly dizzy if I used a ton).
Are you Anemic? My wife is, and her Ferritin has also been dangerously low for way too long (she was not supplementing, big mistake, Doctor’s did not advise her properly) She found out she basically needs to supplement daily, and has to take a strong iron on empty stomach with orange juice to help with absorption. Low iron is extremely hard on the entire body and something that needs to be rectified asap with anyone that has this condition (organs are starved for oxygen, etc).
SM, How are you doing? wondered if the vitamin C IV was helping you?
Anybody hear of Lark Lands Phd. A nutrition expert that has worked mostly with the HIV community to develop diet and supplement protocols to improve quality of life. She has a neuropathy protocol developed for drug induced Neuropathy and mitochondrial damage from the HIV drugs. They seem to have similar effects of oxidative stress and mitochondrial damage as the FQ’s. I am doing a telephone conference with her this Friday.
She has worked with clients with FQ toxicity before with some success. She VERY familiar with FQ toxicity Syndrome.
Yes F please post. Thanks !!
Today I went for my first massage in 17 days after going weekly since early
March. She just works on my lower body and has discovered more tender spots than I ever knew I had. Slowly, she has worked out a lot of discomfort. Like I said, I’ve been off 17 days and today was rough. She said my feet and calf muscles felt crunchy. And it more more than usual too. So that gets me to wondering, what’s going on in my body that allows it to tighten up so quickly? Magnesium seems like a strong candidate. Low magnesium in the cells (which I have) can cause muscles to tighten and neves to misfire. Additionally, the constant muse tightening may even compress vessels and nerves and further worsen things. Crazy thing is I’ve been supplementing mag for 5 months now- orally and transdrmally. Thoughts?
one of my last symptoms is twitching calves… sitting in chair they just pump all day long
fantastic info …will have a good few reads
You guys are killin’ me here! Do I have to get a Phd in microbiology to recover from this nightmare?
Thank you Linda, Jason and SM. I actually do realize this. I am just still reeling from how much my life has been changed from this. I did find a caring ND who was not familiar with floxing but totally open to it and is wanting to rule out all the other possible causes of my PN. I have had a urinalysis for heavy metals.and we are working on a good detox program. I actually have a background in Health care and am all too familiar with the shortcomings of the system.The Canadian system, that is. So Jason you know what I’m talking about.
Thanks guys, Nerve damage does heal very slowly if it heals at all. That’s a bitter pill. I have just finished a course of IV Glutathione, twice a week for a month. Not sure if it did anything. At least the PN seems to have stopped progressing…I think?
Has anyone who has been floxed for many years experienced a reverse order of healing?