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Thanks alot Linda, i really hope your light sensitivity gets better for you. This is really a life changing experience and i wish you plenty of healing. I know someday we will recover from this.
Did anyone find the cure for muscle twitches? Got them after taking Cipro :((
joanneg
8 years ago
Hi Everyone,
UPDATE on my parathyroid surgery.
Immediately, like the same day after the surgery I felt 100% cured of every symptom, I felt NORMAL.
Then, half way through the third day, I started to shake, my body and my brain felt like it was vibrating. So I called the Florida dr. because I thought it could be low calcium which can happen after this type of surgery. And they sent me that day for blood work on my calcium and my pth. My calcium was 9.5 and my pth was 31 which is very good.
The dr. in Florida said that it didn’t sound like parathyroid issues, he said it sounded more like hypothyroid issues, and he said sometimes if you have thyroid issues this surgery can flare it up. So he sent me for thyroid blood work.
I haven’t received the results yet, but I was anxious to let you all know what was going on, and I’ll post again when I do get the results.
I’m sooo discouraged because I thought this was finally resolved!
Tom Marsella
8 years ago
The PROPOFOL side effect was a year ago following my Avelox flox in 2013. Only need the sleeping agents like Demerol, etc. for colonoscopy, as always in past. They didn’t tell me about the PROPOFOL. It’s used to speed up recovery time so Docs can do more colonoscopies. Killed Joan Rivers.
Slowly improving daily, but my SENIOR OLYMPIC track days are behind me. Have had great results with a proprietary herbal blend. Using supplements and exercise. Acupuncture working well for PN. I think at age 75 I’m getting old, for recently while walking by a cemetery two guys chased me with a shovel…lol. Have lost loads of respect for the medical “practice”. I keep praying. Trying times give us a time to try.
Daniel L
8 years ago
Hey guys,
Heading out for a surf session tomorrow.
I got my wetsuit laid out, my board is waxed and everything is ready to go.
It’s lake surfing so the water temp will be 4ºC (39F). ???? ❄ !
If the go-pro gets any decent footage I might post it here.
Frank B
8 years ago
Hi everyone,I’ve been a lurker for quite some time.I was first floxed back in 2009.
I was giving a five day course of Cipro for a food born illness.Three weeks later the symptoms started.I was at work moving students desks(I’m a custodian for a school district)when I felt this strange sensation in my forearms.I felt like my tendons were being pulled apart.My arms actually felt tight,they felt itchy as well.I told my supervisor I wasn’t feeling well and I needed to go home.That night while lying in bed trying to cope with the pain,my whole body suddenly started to feel like it was on fire.Within an hour I felt like a was losing my mind.From July of 2009 to 2011 I experienced almost every symptom that this poison is known to cause.Nerve,tendon,mind,etc.In 2011 I started to get better and by 2012 I felt normal for a while.Then in 2013 I was given Bactrim for a groin infection.Within two hours of taking it,I experienced a full blown relapse that I am still dealing with today.From 2013 to now has been
a rough ride.This is such a frustrating condition.The dieting the searching for answers,I’m so tired.I’m sorry to be posting this here because it is supposed to be a place of hope.But I really am tired.I can’t explain the feeling, its on a deep spiritual or mental level.I feel like giving up.
I can’t stand being in pain anymore.I have actually written out my suicide letter to my family.
My family…
I am unmarried but have three wonderful sisters and niblings who I love more than anything.They are the only reason I stay in this life,they give me strength to get out of bed.They have been so loving and helpful through this whole ordeal.I feel trapped in this world.I must endure this suffering because I don’t want to hurt them.This year what I have been experiencing is a few weeks of relief,followed by a few weeks of symptoms.Just recently I went a month without symptoms,just when I think I’m in the clear,I’m back again.My latest offending substance to cause a return of symptoms-baking soda.Are you kidding me! Yes,one half teaspoon in water for indigestion,completely destroyed me.I am also now dealing with foot pain caused by plantar fasciitis and fibroma.I have been prescribed Mobic and Lyrica which I am afraid to take.A few months ago I got a call back from my doctor concerning a blood test which showed my calcium level to be eleven.Next week I go back to have more tests regarding that.It’s late,I’m rambling,sorry.Anyway I would like to thank you all for your posts that I have been reading for a long time now,and especially Lisa for the site,and the podcast which I listen to at work(can’t believe I still manage to go to work.)It really keeps me going.Lisa you’ve kept me going.So if you are ever in a school and see a custodian with head phones on pushing a broom and crying-it’s probably me…
K
8 years ago
Hi,
seven weeks out from a single tablet of Cipro and still suffering new effects.
The latest is a permanently red face and neck with itching which has been developing over the past three weeks, tied in with my other symptoms I am suspecting either High Estrogen or Low Testosterone as a result of the Cipro jacking my liver – going to see an endocrinologist in a couple of days.
Needless to say LFT and Thyroid tests have come back clear.
Anyone else (especially males) suffered from this and did it resolve over time?
Thanks,
K
K
8 years ago
Just read about Cipro and Mast cell activation so my diagnosis may not be relevant, the question still stands though for anyone that has experienced a red face post-cipro……
K
8 years ago
thanks Lisa, I am also booked in to see a medical herbalist next week so will check it our with her……I guess the duration of the symptoms is variable from person to person…….
I recently obtained a blood test result with some abnormal readings, specifically the following two results:
WBC (White Blood Cells)… Result: 3.6 … Normal Range: 4.0-11.0 (x E9/L) … LOW
Neutrophils… Result: 1.7 … Normal Range: 2.0-7.5 x (E9/L) … LOW
I’ve read up on both low WBC counts and low Neutrophils but was wondering if anybody had more information on these two results and any concerns regarding them.
As I understand it, low WBC counts open me up to all kinds of infections since WBCs act as front-line defenders. Also, I’ve come to know that low Neutrophils levels can cause Neutropenia. Does anyone know why these levels would drop below the norm? Since the antibiotics, I’ve also had my Vitamin D and Vitamin B12 levels fall below the normal range and currently my calcium and PTH readings are as follows:
Calcium Ionized… Result: 1.23 … Normal Range: 1.12-1.31 (mmol/L)
PTH (Parathyroid Hormone)… Result: 4.1 … Normal Range: 1.6-6.9 (pmol/L)
Are these readings considered high normal?
Other readings that are close to out of range include Albumin which reads 49 with normal range being 35-50 and Serum Proteins which reads <1 with normal range being <8 mg/L.
Also, Lymphocytes, Monocytes, Eosinophils, Basophils and Erythrocyte Sedimentation Rate are all bordering on LOW normal.
Has anyone ever had a nerve conduction test? I’m supposed to meet a neurologist next week ….I have insurance so not worried about the cost. I do have intermittent muscle weakness, stinging sensation in feet,etc but my question is: is it really beneficial to know if I actually have nerve damage?? Mentally it will only make me worse, and I’m definitely not taking lyrica or any other pharmie recommended. I’m really scared and thinking about just cancelling the appt altogether.
Has anyone had this experience??
Frank B
8 years ago
Thank you,Lisa and Joanne for responding to my post.Very lovely and moving
quote.I think you two may be on to something regarding the parathyroid.I’m now thinking
that maybe my intolerance to Vitamin D and calcium supplements are connected somehow.
My Vit D levels have been low/borderline for a few years now(18-20) If I take Vit D for
more than three weeks I will have to walk with a cane.Forget about calcium.I live
in Long Island,NY by the way.
Many return hugs.
FB
Ryan L
8 years ago
I wanted to share something I came across recently while trying to find ways to improve my tendon health. I read a blog about how a weight lifter who suffered with tendonosis in both arms for years found a way to cure it by simply taking a Vitamin E capsule with mixed tocopherols. Basically, he poked a hole into the capsule and then applied it topically. He describes everything he did in the link below:
Well, I’ve been trying this for the past few days, and I do believe it is starting to make a positive difference. I’m not pain free, but my tendons (arms, wrists, and achilles) appear to be hurting less. For those interested in trying this, below is a link to the brand of capsules I’m using. There may be better versions out there, but this one has great reviews and only costs $11.29 for 100 capsules. It would probably be good to take this orally as well, but I’m one of those whose digestive system doesn’t agree with the most popular supplements.
Hi guys – I need hope. Anyone on here have a major relapse from stress and recover? I am a year out and was almost healed but I am back to the VERY beginning (CNS is shot, pain growing daily etc) due to extreme stress. I fear I have 5 months of this without improvement like the first time or worse I don’t improve again. Let me know if you relapsed and recovered anyone…
Raito
8 years ago
Do you think, since FQ toxicity CNS effects are very similar to the ones of benzodiazepines withdrawal (GABA-A receptors inability to bind GABA properly, for instance), hyperexctation and so on, asking for help in a benzodiazepine detoxing clininc may be helpful?
Cindy Jones
8 years ago
I haven’t any personal experience of a detox clinic either.
Just an UPDATE on my progress since parathyroid surgery.
Three days after surgery I started to shake in my brain and body, and eventually a lot of my flox symptoms came back. The dr. from florida sent me for blood labs on calcium, pth, and thyroid. The calcium and pth were good, but the thyroid was 2.0 which is hyperthyroid.
The dr explained that this kind of surgery can upset the thyroid and that it could just eventually go back to normal function, but he wanted me to see my endo which I have an appointment for May 11th.
I seriously think, like Linda, that this was a reaction to the drugs used in surgery and they flared up my fq symptoms.
Anyhow, 4 days ago I couldn’t stand my brain vibrating any more so I took 2mgs of some old diazepam/valuim that I had, and it helped tremendously that day and it never came back!!
(I only took the diazepam 1 time because I’m scared to death of all these meds)
I don’t know if that was just coincidence and just time helped idk I’m just glad it stopped.
I still have some flox symptoms, but everything is way better than before surgery, and since the day I stopped shaking the remaining flox symptoms seem to be getting a little better each day.
I will keep posting as things change.
I pray God helps you all find your healing soon.
P.S. Cindy and Frank B.
I would encourage you both to take care of your high calcium ASAP!! I’m soooo glad I did.
I’m a newly floxed (about five weeks ago) struggling with insomnia. The only relief I can get at the moment is benzos (Klonopin, depending on the period, 0.8 mg – 2 mg every day). I can’t go ahead this way for ever and I’m scared I’m making thing worse. But without benzos I can’t sleep at all. I just stay there in the bed, waiting for a sleepiness that won’t come. I’m seeing my psychiatrist tomorrow hoping he will give me some different sleeping pills.
At the moment total insomnia is my only symptom!
Thanks alot Linda, i really hope your light sensitivity gets better for you. This is really a life changing experience and i wish you plenty of healing. I know someday we will recover from this.
Did anyone find the cure for muscle twitches? Got them after taking Cipro :((
Hi Everyone,
UPDATE on my parathyroid surgery.
Immediately, like the same day after the surgery I felt 100% cured of every symptom, I felt NORMAL.
Then, half way through the third day, I started to shake, my body and my brain felt like it was vibrating. So I called the Florida dr. because I thought it could be low calcium which can happen after this type of surgery. And they sent me that day for blood work on my calcium and my pth. My calcium was 9.5 and my pth was 31 which is very good.
The dr. in Florida said that it didn’t sound like parathyroid issues, he said it sounded more like hypothyroid issues, and he said sometimes if you have thyroid issues this surgery can flare it up. So he sent me for thyroid blood work.
I haven’t received the results yet, but I was anxious to let you all know what was going on, and I’ll post again when I do get the results.
I’m sooo discouraged because I thought this was finally resolved!
The PROPOFOL side effect was a year ago following my Avelox flox in 2013. Only need the sleeping agents like Demerol, etc. for colonoscopy, as always in past. They didn’t tell me about the PROPOFOL. It’s used to speed up recovery time so Docs can do more colonoscopies. Killed Joan Rivers.
Slowly improving daily, but my SENIOR OLYMPIC track days are behind me. Have had great results with a proprietary herbal blend. Using supplements and exercise. Acupuncture working well for PN. I think at age 75 I’m getting old, for recently while walking by a cemetery two guys chased me with a shovel…lol. Have lost loads of respect for the medical “practice”. I keep praying. Trying times give us a time to try.
Hey guys,
Heading out for a surf session tomorrow.
I got my wetsuit laid out, my board is waxed and everything is ready to go.
It’s lake surfing so the water temp will be 4ºC (39F). ???? ❄ !
If the go-pro gets any decent footage I might post it here.
Hi everyone,I’ve been a lurker for quite some time.I was first floxed back in 2009.
I was giving a five day course of Cipro for a food born illness.Three weeks later the symptoms started.I was at work moving students desks(I’m a custodian for a school district)when I felt this strange sensation in my forearms.I felt like my tendons were being pulled apart.My arms actually felt tight,they felt itchy as well.I told my supervisor I wasn’t feeling well and I needed to go home.That night while lying in bed trying to cope with the pain,my whole body suddenly started to feel like it was on fire.Within an hour I felt like a was losing my mind.From July of 2009 to 2011 I experienced almost every symptom that this poison is known to cause.Nerve,tendon,mind,etc.In 2011 I started to get better and by 2012 I felt normal for a while.Then in 2013 I was given Bactrim for a groin infection.Within two hours of taking it,I experienced a full blown relapse that I am still dealing with today.From 2013 to now has been
a rough ride.This is such a frustrating condition.The dieting the searching for answers,I’m so tired.I’m sorry to be posting this here because it is supposed to be a place of hope.But I really am tired.I can’t explain the feeling, its on a deep spiritual or mental level.I feel like giving up.
I can’t stand being in pain anymore.I have actually written out my suicide letter to my family.
My family…
I am unmarried but have three wonderful sisters and niblings who I love more than anything.They are the only reason I stay in this life,they give me strength to get out of bed.They have been so loving and helpful through this whole ordeal.I feel trapped in this world.I must endure this suffering because I don’t want to hurt them.This year what I have been experiencing is a few weeks of relief,followed by a few weeks of symptoms.Just recently I went a month without symptoms,just when I think I’m in the clear,I’m back again.My latest offending substance to cause a return of symptoms-baking soda.Are you kidding me! Yes,one half teaspoon in water for indigestion,completely destroyed me.I am also now dealing with foot pain caused by plantar fasciitis and fibroma.I have been prescribed Mobic and Lyrica which I am afraid to take.A few months ago I got a call back from my doctor concerning a blood test which showed my calcium level to be eleven.Next week I go back to have more tests regarding that.It’s late,I’m rambling,sorry.Anyway I would like to thank you all for your posts that I have been reading for a long time now,and especially Lisa for the site,and the podcast which I listen to at work(can’t believe I still manage to go to work.)It really keeps me going.Lisa you’ve kept me going.So if you are ever in a school and see a custodian with head phones on pushing a broom and crying-it’s probably me…
Hi,
seven weeks out from a single tablet of Cipro and still suffering new effects.
The latest is a permanently red face and neck with itching which has been developing over the past three weeks, tied in with my other symptoms I am suspecting either High Estrogen or Low Testosterone as a result of the Cipro jacking my liver – going to see an endocrinologist in a couple of days.
Needless to say LFT and Thyroid tests have come back clear.
Anyone else (especially males) suffered from this and did it resolve over time?
Thanks,
K
Just read about Cipro and Mast cell activation so my diagnosis may not be relevant, the question still stands though for anyone that has experienced a red face post-cipro……
thanks Lisa, I am also booked in to see a medical herbalist next week so will check it our with her……I guess the duration of the symptoms is variable from person to person…….
This is beautiful – https://www.psychologytoday.com/blog/turning-straw-gold/201604/when-you-re-chronically-ill-giving-versus-giving-in
Hey everyone,
I’m wondering if someone can help me out.
I recently obtained a blood test result with some abnormal readings, specifically the following two results:
WBC (White Blood Cells)… Result: 3.6 … Normal Range: 4.0-11.0 (x E9/L) … LOW
Neutrophils… Result: 1.7 … Normal Range: 2.0-7.5 x (E9/L) … LOW
I’ve read up on both low WBC counts and low Neutrophils but was wondering if anybody had more information on these two results and any concerns regarding them.
As I understand it, low WBC counts open me up to all kinds of infections since WBCs act as front-line defenders. Also, I’ve come to know that low Neutrophils levels can cause Neutropenia. Does anyone know why these levels would drop below the norm? Since the antibiotics, I’ve also had my Vitamin D and Vitamin B12 levels fall below the normal range and currently my calcium and PTH readings are as follows:
Calcium Ionized… Result: 1.23 … Normal Range: 1.12-1.31 (mmol/L)
PTH (Parathyroid Hormone)… Result: 4.1 … Normal Range: 1.6-6.9 (pmol/L)
Are these readings considered high normal?
Other readings that are close to out of range include Albumin which reads 49 with normal range being 35-50 and Serum Proteins which reads <1 with normal range being <8 mg/L.
Also, Lymphocytes, Monocytes, Eosinophils, Basophils and Erythrocyte Sedimentation Rate are all bordering on LOW normal.
Anyone?
Has anyone ever had a nerve conduction test? I’m supposed to meet a neurologist next week ….I have insurance so not worried about the cost. I do have intermittent muscle weakness, stinging sensation in feet,etc but my question is: is it really beneficial to know if I actually have nerve damage?? Mentally it will only make me worse, and I’m definitely not taking lyrica or any other pharmie recommended. I’m really scared and thinking about just cancelling the appt altogether.
Has anyone had this experience??
Thank you,Lisa and Joanne for responding to my post.Very lovely and moving
quote.I think you two may be on to something regarding the parathyroid.I’m now thinking
that maybe my intolerance to Vitamin D and calcium supplements are connected somehow.
My Vit D levels have been low/borderline for a few years now(18-20) If I take Vit D for
more than three weeks I will have to walk with a cane.Forget about calcium.I live
in Long Island,NY by the way.
Many return hugs.
FB
I wanted to share something I came across recently while trying to find ways to improve my tendon health. I read a blog about how a weight lifter who suffered with tendonosis in both arms for years found a way to cure it by simply taking a Vitamin E capsule with mixed tocopherols. Basically, he poked a hole into the capsule and then applied it topically. He describes everything he did in the link below:
http://forum.bodybuilding.com/showthread.php?t=6092201
Well, I’ve been trying this for the past few days, and I do believe it is starting to make a positive difference. I’m not pain free, but my tendons (arms, wrists, and achilles) appear to be hurting less. For those interested in trying this, below is a link to the brand of capsules I’m using. There may be better versions out there, but this one has great reviews and only costs $11.29 for 100 capsules. It would probably be good to take this orally as well, but I’m one of those whose digestive system doesn’t agree with the most popular supplements.
http://www.amazon.com/Solgar-Vitamin-400-100-softgels/dp/B00012NJJG/ref=sr_1_1_s_it?s=hpc&ie=UTF8&qid=1461781187&sr=1-1&keywords=Solgar+-+Vitamin+E%2C+400+IU%2C+100+softgels
Hi guys – I need hope. Anyone on here have a major relapse from stress and recover? I am a year out and was almost healed but I am back to the VERY beginning (CNS is shot, pain growing daily etc) due to extreme stress. I fear I have 5 months of this without improvement like the first time or worse I don’t improve again. Let me know if you relapsed and recovered anyone…
Do you think, since FQ toxicity CNS effects are very similar to the ones of benzodiazepines withdrawal (GABA-A receptors inability to bind GABA properly, for instance), hyperexctation and so on, asking for help in a benzodiazepine detoxing clininc may be helpful?
I haven’t any personal experience of a detox clinic either.
https://mail.google.com/mail/u/0/#inbox/1546bbd03a3b7027
Newsletter from Daily Health.
Hi Everyone,
Just an UPDATE on my progress since parathyroid surgery.
Three days after surgery I started to shake in my brain and body, and eventually a lot of my flox symptoms came back. The dr. from florida sent me for blood labs on calcium, pth, and thyroid. The calcium and pth were good, but the thyroid was 2.0 which is hyperthyroid.
The dr explained that this kind of surgery can upset the thyroid and that it could just eventually go back to normal function, but he wanted me to see my endo which I have an appointment for May 11th.
I seriously think, like Linda, that this was a reaction to the drugs used in surgery and they flared up my fq symptoms.
Anyhow, 4 days ago I couldn’t stand my brain vibrating any more so I took 2mgs of some old diazepam/valuim that I had, and it helped tremendously that day and it never came back!!
(I only took the diazepam 1 time because I’m scared to death of all these meds)
I don’t know if that was just coincidence and just time helped idk I’m just glad it stopped.
I still have some flox symptoms, but everything is way better than before surgery, and since the day I stopped shaking the remaining flox symptoms seem to be getting a little better each day.
I will keep posting as things change.
I pray God helps you all find your healing soon.
P.S. Cindy and Frank B.
I would encourage you both to take care of your high calcium ASAP!! I’m soooo glad I did.
I’m a newly floxed (about five weeks ago) struggling with insomnia. The only relief I can get at the moment is benzos (Klonopin, depending on the period, 0.8 mg – 2 mg every day). I can’t go ahead this way for ever and I’m scared I’m making thing worse. But without benzos I can’t sleep at all. I just stay there in the bed, waiting for a sleepiness that won’t come. I’m seeing my psychiatrist tomorrow hoping he will give me some different sleeping pills.
At the moment total insomnia is my only symptom!