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mark
10 years ago
debs? what fluoroquins did you take? and did you only have a reaction the last time? are you able to walk now?
Andrew
10 years ago
I am scheduled for dental surgery tomorrow and I am sure I will be prescribed penicillin or amoxicillin. I am feeling better since I was floxed in February so I don’t want to risk a major relapse. Anyone have any thoughts?
Andrew
10 years ago
Thanks Laura – my question is really about the antibiotics the dentist will likely prescribe.
Mike
10 years ago
Hey Debs or anyone else that can answer this for me…. My symptoms have been extremely delayed from when I took Cipro in Jan of 2012. I had severe forearm tendonitis when I first took cipro. I stopped taking it when I developed right shoulder pain and a funny feeling in my achiles. When I stopped Cipro I looked up info on the internet and it scared me to death. I thought I was out of the woods because I didn’t have any issues until a little over a year later!…. then a whole slew of side effects. My main complaint is tendons and joints.. I am now 2 and 1/2 years out and I’m not getting better…. I’m getting worse. All of the recovery stories I’ve seen deal with an immediate reaction. Does anyone ever recover from a severe delayed reaction like this? I can’t find any accounts to give me some hope!!!!!!
Lane
10 years ago
Dear Fellow floxies,
I’d like to recommend 2 books I’ve read recently that may interest the community:
“Diagnosis and Treatment of Chronic Fatigue Syndrome: it’s mitchondria, not hypochondria!” by Dr. Sarah MyHill
“The Wahls Protocol: How I beat Progressive MS Using Paleo Principles and Functional Medicine” by Dr. Terry Wahls
Both books (available on Amazon) directly address the health of our mitochondria and supporting/restoring proper function. Dr. MyHill has a more systematic approch to diagnosing mitochondrial disfunction, but Dr. Wahls has a better treatment (protocol) for restoring health in my opinion. I agree with Lisa that is cause of our ills is in the mitochondria; these are best (science-based) books I’ve found that really offer some explanation and proven approaches to restoring mitochondrial health.
Cheers,
Lane
Suzanne
10 years ago
I took cipro three years ago and had no side effects but I was given cipro a few days ago for possible uti. I only took two of them because they made me feel so sick and weird in my head. I have has anxiety problems for years before taking antibiotics. I am scared. Do you think the two cipro I took will cause a lot of damage? Please help.
Mike
10 years ago
Lane,
After this severe delayed reaction to Cipro, I realized that I have had Levaquin a few times in my past. I also remember periods of bad knee pain and floaters which might have been related to when I took FQ’s in the past. I have autonomic dysfunction. I developed it in my late 20’s. I went to Vanderbuilt autonomic dysfunction center a few years back and was diagnosed with NCS (neurocardiogenic syncope). Not sure if there is a link…. I’ve wondered though.
‘B’ asked me to post some supplements that I think have helped me so far.
Vitamin B complex – I think the nerves in my legs got damaged which caused muscle atrophy and weakness. B vitamins are supposed to help nerves regenerate. It feels like my leg strength started to come back last week.
COQ10 – Good antioxidant and helps mitochondria.
Whey protein – I always used whey protein, but I switched to a bioactive whey protein because it it supposed to boost glutathione.
Creatine – Provides ATP for mitochondria and increases muscle strength.
Beta Alanine – Increases muscle endurance (causes tingling – usually on the face)
Magnesium – Gel, liquid, and epsom salt baths.
Antioxidants – milk thistle, grapeseed, vitamin c. I took a bunch initially, but when they’re finished I’m only going to take maybe 1 or 2.
Probiotics – Had some gastro problems earlier and have to make sure nutrients are absorbed.
I also eat blueberries and kefir everyday for antioxidants and probiotics.
Recently I added in Joint-V (MSM, glucosamine, chondroitin, and hyaluronic acid) and Swanson Joint Health (Fortigel). When Joint-V is finished I’m going to take Mercola Joint Support, NOW Glucosamine, chondroitin and MSM, and Swanson Joint Health.
I moved close to some good bike trails in Feb. Still upset I took a bunch of advil since it is not something I would do normally, but I never had a serious injury so I was open to suggestions. I would’ve been biking up in the mountains several times a week. I was able to go on a 20km bike ride on Sunday.
B
10 years ago
As said earlier, I will report to you guys once I see some long term result. Here is
Report : I am feeling a little bit better in the past 30 days. Still cannot walk/stand for long, but the pain level droped down to 0~2 (maximum is level 10) as long as no walking/standing.
Here is the tips that I followed, given by my acupuncture:
Take (To do list):
1, Krill Oil Omega 3
2, Turmeric
3, Vitamin B6
4, Magnesium
5, CoQ10
6, Multi-vitamins & Multi-Minerals
7, I also get acupuncture every week. (This really depends on your acupuncturist . He/she might or might not be good at your specific case. As we all know, every floxie is different)
Do not take much (Not to do list):
1, Avoid beef, dairy, cheese
2, Avoid orange
3, Do not eat more than 2 fruits per day
4, Do not take much of these: green tea, tofu (or yellow beans product), sour/acid food
Do not know which tip helped me, or maybe nothing helped me but time.
They do not seem to “solve” the problem, but they probably relieved the pain.
If I have to pick up some of them that I believe helping, they would be
—magnesium
—turmeric
Hope this may help you guys.
B
B
10 years ago
It is frustrating that people judge me when I park on the handicap parking, even though I have handicap parking sign on my windshield. They think I am cheating.
I tried my best to not yell at them. Must contral anger.
Again, we must understand that they do not understand.
That is, floxie.
Amy
10 years ago
Lane, the nerve conduction test didn’t worsen any symptoms did they?
Many of you have inquired about homeopathic treatments. I have never known how to answer your inquiries because I haven’t tried them. Here is what a fellow Floxie said about her experience with HomeoLevaquin:
“In the wake of Bob’s passing, I wanted to post an update on my homeopathy treatment that I started in the end of April and hopefully give others some hope for healing. I began taking HomeoLevaquin the beginning of May, and for the first month, I was a wreck. Every single one of my symptoms went nuts. The really interesting thing was though, my symptoms started with my newest symptoms first. I didn’t think about this until I read a bit more on homeopathy remedies. First off, if you start a remedy and your symptoms don’t go nuts, than the remedy isn’t working and you need a new one. Secondly, the reason the symptoms start appearing in order of the newest first is that the remedy digs at the superficial things first and the deeper it goes (the longer you take it) it digs farther into your tissue and organs and removes the original Levaquin in that order. So here’s where the hope comes in. I have accepted the fact that I will always have a bit of permanent damage from the Levaquin. Things such as some joint issues here and there, a bit of peripheral neuropathy, etc… What I CAN tell all of you (and I’m aware that there are many of you that think this mode of treatment is insane) is that in my 3rd month of my treatment, I am feeling better than I have in a year and a half. My symptoms stopped completely after the first month, I now have my old energy and spunk back, my sex drive came back in overdrive (I lost ALL interest in sex after being floxed), my brain fog is GONE, and I feel like ME again! I don’t feel like an 80yo anymore! I can’t even type this without crying because I don’t want there to be a relapse and that this is only temporary. I’m also crying because I really hope some of you seek out a homeopath and try this. My husband can’t believe the change in me over the past month. He saw it immediately. He said I’m “Ann again”… We CAN DEFEAT these drugs guys. We can! We can LIVE again! Even if this feel good period I’m having is temporary, I know I’m on the right path now. I will continue to post updates in a few months. All I can do is urge you guys to give this treatment some serious thought. And I’m also sending love and hugs to all of you. I think we’re all sad after Bob’s passing.”
Al
10 years ago
Hi Lisa. I was just wondering if you think that getting the poison entirely out of your system is the path to full recovery? Sorry if this has been asked before. Thank you.
Amy
10 years ago
How long did most everyone mental symptoms last? It’s starting to worry me even more. I do really well one day then if I wake up in pain I am instantly depressed. Does anyone else go through this? I’m starting to think I have something more mentally. Hope someone can help ease my mind! With every new pain my mental state declines again. I am 5 months out and just want my happy self back. 🙁 Starting to feel like this is a permanent mental state!
Lane
10 years ago
Hi Lisa,
Have you heard of anyone that has used or achieved any success in healing from low level lazer therapy (LLLT)?
Thank you!
Michael Teeter
10 years ago
Amy,
When anyone experiences extreme pain and lack of mobility it is easy to be depressed.
On top of that the meds that floxed you go to your brain. I had severe depression. Give yourself some time to heal and surround yourself with positive thoughts and people.
And remember Lisa’s advice is golden!
Hang in there
Michael T
jimmy
10 years ago
hi everyone, has anyone been to the dentist since floxing or know what can or shouldn’t be done? for example, i’ve heard epinephrine is not a good idea and can cause us problems? I’m told that my dentist (doing a root canal!) can use prilocaine/citanest…has anyone used this for a filling or root canal? any problems for us floxies? what about doing teeth X-rays?
thanks!
Al
10 years ago
Thank you so much for that helpful and informative post Lisa. You are doing an amazing job being such a strong support system for so many people who are suffering from this. Blessings.
Krystle
10 years ago
Hello! This site has been so helpful for me! After suffering some side effects from being floxed from levaquin, it has given me some positive thoughts in getting better! I was on day 5 of 15 of 750mg for a serious URI and I started to have sore calf muscles. Sore calf muscles went to feeling like my calves were being ripped in two. It was excruciating and I was having a hard time walking, let alone stand. It has been three days now since my last pill and I’m noticing a slight improvement in my legs. I was terrified at the side effects when I read them online while trying to figure out what was going on with my body. My doctor has apologized up and down, and I understand that although this drug is very dangerous it has also helped so many without these effects. He is human and luckily has been willing and knows that he needs to help me get better now! I have been on cipro in the past for ecolli that I had gotten on a missions trip and it didn’t have a single side effect on me, so this definitely hit me out of left field. I haven’t had any other side effects other than the terrible calf pain, and I am thankful for that! My walking is extremely slowed and luckily I work for a doctors office and get to sit down all day! I am praying and believing for a full recovery and understand that time is my biggest hope! Thank you again for this site, it has helped over the last couple of days as I’ve coped with the fear of not waking normal for awhile! I’ve decided now that I will keep focused on getting better and won’t even think about not walking or running the same again! 🙂
Peter
10 years ago
So it’s been a few weeks over a year since I first took levaquin for what the doctor thought was inflammation of my lung and I have to say the symptoms continue to come. My initial symptoms included massive burning of my face, neck, and chest, vibrating ankles, foggines, headaches, migraines, heart palpitations, blurry vision, receding skin under nails, brittle nails, see through white on my nails,etc. Over the course of this year, I have seen no improvement and actually seen it get worse. In December they got worse, with extreme shortness of breath, an ulcer (or so the ENT says) in my nose that has caused between 0% and 20% passage of air through one nostril and 50% at best from the other (they switch percents daily). This makes breathing a struggle. This turned into extreme cold hands and absolutely blue fingers in March. Then to numb arms/fingers in April and extreme itching on my legs a few days ago (june). I’ve had relapses of the burning of the face in the sense that it burned from start (June 2013) til Jan 2014 and then was ok until May 2014, when it has restarted. I took 7 pills of levaquin and noticed symptoms immediately in my ankles, but was told to keep taking it. I even tried to get him to prescribe a different medicine, but he would not. I’ve had every test done under the sun with no doctors believing me. I’ve been to doctors, the ENT, foot doctors, a sports medicine doctor, a neurologist, a cardiologist, an immune doctor, the ER multiple times, to 5 different cities. I’ve had blood work, multiple MRIs on my entire spine and brain, xrays on my chest for the original problem, been adjusted, given flonase twice now (Originally and in Dec for ulcer that is still there), given an antibiotic for the ulcer, had a cat scan, and much more. I was also given a steroid one week after the original levaquin ended, which I’ve read is bad.
All and all, each day is worse than the last. I’ve been overwhelmed by people claiming this or that helps. I’ve tried magnesium and milk thistle per the foot doctor’s help (she’s the only one who believed me and heard of this medicine), but come up empty. I don’t see changing my entire life as beating this, like some claim. That’s not being healthy or normal. I’m overwhelmed by all the theories on what might help and can’t go buy a million vitamins just to hope. I need answers, but an week past thinking I will ever beat this. I’ve come to believe it will either be the cause of my death down the road or at least shorten my life span. I need hope. I need something that will reduce my symptoms, not add to them. The last time I counted back in October, I had over 40 symptoms, I’m closer to 50 now. I can’t even remember most without my paper because so many are part of my life now, the norm.
Does anyone have something that did work or help? I’m not asking for “keep a positive attitude”, I’m asking for anything that helped end any of your symptoms or severely reduced its occurrence.
debs? what fluoroquins did you take? and did you only have a reaction the last time? are you able to walk now?
I am scheduled for dental surgery tomorrow and I am sure I will be prescribed penicillin or amoxicillin. I am feeling better since I was floxed in February so I don’t want to risk a major relapse. Anyone have any thoughts?
Thanks Laura – my question is really about the antibiotics the dentist will likely prescribe.
Hey Debs or anyone else that can answer this for me…. My symptoms have been extremely delayed from when I took Cipro in Jan of 2012. I had severe forearm tendonitis when I first took cipro. I stopped taking it when I developed right shoulder pain and a funny feeling in my achiles. When I stopped Cipro I looked up info on the internet and it scared me to death. I thought I was out of the woods because I didn’t have any issues until a little over a year later!…. then a whole slew of side effects. My main complaint is tendons and joints.. I am now 2 and 1/2 years out and I’m not getting better…. I’m getting worse. All of the recovery stories I’ve seen deal with an immediate reaction. Does anyone ever recover from a severe delayed reaction like this? I can’t find any accounts to give me some hope!!!!!!
Dear Fellow floxies,
I’d like to recommend 2 books I’ve read recently that may interest the community:
“Diagnosis and Treatment of Chronic Fatigue Syndrome: it’s mitchondria, not hypochondria!” by Dr. Sarah MyHill
“The Wahls Protocol: How I beat Progressive MS Using Paleo Principles and Functional Medicine” by Dr. Terry Wahls
Both books (available on Amazon) directly address the health of our mitochondria and supporting/restoring proper function. Dr. MyHill has a more systematic approch to diagnosing mitochondrial disfunction, but Dr. Wahls has a better treatment (protocol) for restoring health in my opinion. I agree with Lisa that is cause of our ills is in the mitochondria; these are best (science-based) books I’ve found that really offer some explanation and proven approaches to restoring mitochondrial health.
Cheers,
Lane
I took cipro three years ago and had no side effects but I was given cipro a few days ago for possible uti. I only took two of them because they made me feel so sick and weird in my head. I have has anxiety problems for years before taking antibiotics. I am scared. Do you think the two cipro I took will cause a lot of damage? Please help.
Lane,
After this severe delayed reaction to Cipro, I realized that I have had Levaquin a few times in my past. I also remember periods of bad knee pain and floaters which might have been related to when I took FQ’s in the past. I have autonomic dysfunction. I developed it in my late 20’s. I went to Vanderbuilt autonomic dysfunction center a few years back and was diagnosed with NCS (neurocardiogenic syncope). Not sure if there is a link…. I’ve wondered though.
‘B’ asked me to post some supplements that I think have helped me so far.
Vitamin B complex – I think the nerves in my legs got damaged which caused muscle atrophy and weakness. B vitamins are supposed to help nerves regenerate. It feels like my leg strength started to come back last week.
COQ10 – Good antioxidant and helps mitochondria.
Whey protein – I always used whey protein, but I switched to a bioactive whey protein because it it supposed to boost glutathione.
Creatine – Provides ATP for mitochondria and increases muscle strength.
Beta Alanine – Increases muscle endurance (causes tingling – usually on the face)
Magnesium – Gel, liquid, and epsom salt baths.
Antioxidants – milk thistle, grapeseed, vitamin c. I took a bunch initially, but when they’re finished I’m only going to take maybe 1 or 2.
Probiotics – Had some gastro problems earlier and have to make sure nutrients are absorbed.
I also eat blueberries and kefir everyday for antioxidants and probiotics.
Recently I added in Joint-V (MSM, glucosamine, chondroitin, and hyaluronic acid) and Swanson Joint Health (Fortigel). When Joint-V is finished I’m going to take Mercola Joint Support, NOW Glucosamine, chondroitin and MSM, and Swanson Joint Health.
I moved close to some good bike trails in Feb. Still upset I took a bunch of advil since it is not something I would do normally, but I never had a serious injury so I was open to suggestions. I would’ve been biking up in the mountains several times a week. I was able to go on a 20km bike ride on Sunday.
As said earlier, I will report to you guys once I see some long term result. Here is
Report : I am feeling a little bit better in the past 30 days. Still cannot walk/stand for long, but the pain level droped down to 0~2 (maximum is level 10) as long as no walking/standing.
Here is the tips that I followed, given by my acupuncture:
Take (To do list):
1, Krill Oil Omega 3
2, Turmeric
3, Vitamin B6
4, Magnesium
5, CoQ10
6, Multi-vitamins & Multi-Minerals
7, I also get acupuncture every week. (This really depends on your acupuncturist . He/she might or might not be good at your specific case. As we all know, every floxie is different)
Do not take much (Not to do list):
1, Avoid beef, dairy, cheese
2, Avoid orange
3, Do not eat more than 2 fruits per day
4, Do not take much of these: green tea, tofu (or yellow beans product), sour/acid food
Do not know which tip helped me, or maybe nothing helped me but time.
They do not seem to “solve” the problem, but they probably relieved the pain.
If I have to pick up some of them that I believe helping, they would be
—magnesium
—turmeric
Hope this may help you guys.
B
It is frustrating that people judge me when I park on the handicap parking, even though I have handicap parking sign on my windshield. They think I am cheating.
I tried my best to not yell at them. Must contral anger.
Again, we must understand that they do not understand.
That is, floxie.
Lane, the nerve conduction test didn’t worsen any symptoms did they?
Many of you have inquired about homeopathic treatments. I have never known how to answer your inquiries because I haven’t tried them. Here is what a fellow Floxie said about her experience with HomeoLevaquin:
“In the wake of Bob’s passing, I wanted to post an update on my homeopathy treatment that I started in the end of April and hopefully give others some hope for healing. I began taking HomeoLevaquin the beginning of May, and for the first month, I was a wreck. Every single one of my symptoms went nuts. The really interesting thing was though, my symptoms started with my newest symptoms first. I didn’t think about this until I read a bit more on homeopathy remedies. First off, if you start a remedy and your symptoms don’t go nuts, than the remedy isn’t working and you need a new one. Secondly, the reason the symptoms start appearing in order of the newest first is that the remedy digs at the superficial things first and the deeper it goes (the longer you take it) it digs farther into your tissue and organs and removes the original Levaquin in that order. So here’s where the hope comes in. I have accepted the fact that I will always have a bit of permanent damage from the Levaquin. Things such as some joint issues here and there, a bit of peripheral neuropathy, etc… What I CAN tell all of you (and I’m aware that there are many of you that think this mode of treatment is insane) is that in my 3rd month of my treatment, I am feeling better than I have in a year and a half. My symptoms stopped completely after the first month, I now have my old energy and spunk back, my sex drive came back in overdrive (I lost ALL interest in sex after being floxed), my brain fog is GONE, and I feel like ME again! I don’t feel like an 80yo anymore! I can’t even type this without crying because I don’t want there to be a relapse and that this is only temporary. I’m also crying because I really hope some of you seek out a homeopath and try this. My husband can’t believe the change in me over the past month. He saw it immediately. He said I’m “Ann again”… We CAN DEFEAT these drugs guys. We can! We can LIVE again! Even if this feel good period I’m having is temporary, I know I’m on the right path now. I will continue to post updates in a few months. All I can do is urge you guys to give this treatment some serious thought. And I’m also sending love and hugs to all of you. I think we’re all sad after Bob’s passing.”
Hi Lisa. I was just wondering if you think that getting the poison entirely out of your system is the path to full recovery? Sorry if this has been asked before. Thank you.
How long did most everyone mental symptoms last? It’s starting to worry me even more. I do really well one day then if I wake up in pain I am instantly depressed. Does anyone else go through this? I’m starting to think I have something more mentally. Hope someone can help ease my mind! With every new pain my mental state declines again. I am 5 months out and just want my happy self back. 🙁 Starting to feel like this is a permanent mental state!
Hi Lisa,
Have you heard of anyone that has used or achieved any success in healing from low level lazer therapy (LLLT)?
Thank you!
Amy,
When anyone experiences extreme pain and lack of mobility it is easy to be depressed.
On top of that the meds that floxed you go to your brain. I had severe depression. Give yourself some time to heal and surround yourself with positive thoughts and people.
And remember Lisa’s advice is golden!
Hang in there
Michael T
hi everyone, has anyone been to the dentist since floxing or know what can or shouldn’t be done? for example, i’ve heard epinephrine is not a good idea and can cause us problems? I’m told that my dentist (doing a root canal!) can use prilocaine/citanest…has anyone used this for a filling or root canal? any problems for us floxies? what about doing teeth X-rays?
thanks!
Thank you so much for that helpful and informative post Lisa. You are doing an amazing job being such a strong support system for so many people who are suffering from this. Blessings.
Hello! This site has been so helpful for me! After suffering some side effects from being floxed from levaquin, it has given me some positive thoughts in getting better! I was on day 5 of 15 of 750mg for a serious URI and I started to have sore calf muscles. Sore calf muscles went to feeling like my calves were being ripped in two. It was excruciating and I was having a hard time walking, let alone stand. It has been three days now since my last pill and I’m noticing a slight improvement in my legs. I was terrified at the side effects when I read them online while trying to figure out what was going on with my body. My doctor has apologized up and down, and I understand that although this drug is very dangerous it has also helped so many without these effects. He is human and luckily has been willing and knows that he needs to help me get better now! I have been on cipro in the past for ecolli that I had gotten on a missions trip and it didn’t have a single side effect on me, so this definitely hit me out of left field. I haven’t had any other side effects other than the terrible calf pain, and I am thankful for that! My walking is extremely slowed and luckily I work for a doctors office and get to sit down all day! I am praying and believing for a full recovery and understand that time is my biggest hope! Thank you again for this site, it has helped over the last couple of days as I’ve coped with the fear of not waking normal for awhile! I’ve decided now that I will keep focused on getting better and won’t even think about not walking or running the same again! 🙂
So it’s been a few weeks over a year since I first took levaquin for what the doctor thought was inflammation of my lung and I have to say the symptoms continue to come. My initial symptoms included massive burning of my face, neck, and chest, vibrating ankles, foggines, headaches, migraines, heart palpitations, blurry vision, receding skin under nails, brittle nails, see through white on my nails,etc. Over the course of this year, I have seen no improvement and actually seen it get worse. In December they got worse, with extreme shortness of breath, an ulcer (or so the ENT says) in my nose that has caused between 0% and 20% passage of air through one nostril and 50% at best from the other (they switch percents daily). This makes breathing a struggle. This turned into extreme cold hands and absolutely blue fingers in March. Then to numb arms/fingers in April and extreme itching on my legs a few days ago (june). I’ve had relapses of the burning of the face in the sense that it burned from start (June 2013) til Jan 2014 and then was ok until May 2014, when it has restarted. I took 7 pills of levaquin and noticed symptoms immediately in my ankles, but was told to keep taking it. I even tried to get him to prescribe a different medicine, but he would not. I’ve had every test done under the sun with no doctors believing me. I’ve been to doctors, the ENT, foot doctors, a sports medicine doctor, a neurologist, a cardiologist, an immune doctor, the ER multiple times, to 5 different cities. I’ve had blood work, multiple MRIs on my entire spine and brain, xrays on my chest for the original problem, been adjusted, given flonase twice now (Originally and in Dec for ulcer that is still there), given an antibiotic for the ulcer, had a cat scan, and much more. I was also given a steroid one week after the original levaquin ended, which I’ve read is bad.
All and all, each day is worse than the last. I’ve been overwhelmed by people claiming this or that helps. I’ve tried magnesium and milk thistle per the foot doctor’s help (she’s the only one who believed me and heard of this medicine), but come up empty. I don’t see changing my entire life as beating this, like some claim. That’s not being healthy or normal. I’m overwhelmed by all the theories on what might help and can’t go buy a million vitamins just to hope. I need answers, but an week past thinking I will ever beat this. I’ve come to believe it will either be the cause of my death down the road or at least shorten my life span. I need hope. I need something that will reduce my symptoms, not add to them. The last time I counted back in October, I had over 40 symptoms, I’m closer to 50 now. I can’t even remember most without my paper because so many are part of my life now, the norm.
Does anyone have something that did work or help? I’m not asking for “keep a positive attitude”, I’m asking for anything that helped end any of your symptoms or severely reduced its occurrence.