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Sallysblooms 05-18-2012 11:54 AM

Quote:

Grandma123. Did your PN symptoms start while on Levaquin or later? Because the half life of both cipro and levaquin is such that about 20 hours after your last dose it is out of your system. So, if during the course of taking it your nerves were damaged why would the symptoms be delayed, if indeed they were? Why wouldn't the PN be evident while on it or shortly thereafter?
If only it were simple. My doctors have spoken with me about all of this and they keep trying to find a better medication for next time I need it. Damage can happen later for sure. Not just with Levaquine, so many drugs have terrible effects later. I have read so much about it and spoken with doctors and pharmacists. Not rare at all.

It is important to me to learn from things that happened and do all I can to correct the damage and not repeat. VERY hard since so many meds cause these problems.

grandma123 05-18-2012 12:03 PM

Quote:

Originally Posted by helpmeron (Post 880627)
I think your a little off on your judgment. I am 32 years old, Healthy and fit. I actually had burning type pain while taking the medication. My bone head doctor told me to continue taking the meds because both of us didn't read the label that is on Levanquins warning sheet that reads if you experience any burning, tingling, or pain sensations to stop taking the meds immediately to prevent any irreversible nerve damage. I hear what you are saying but I don''t think you can compare Niacin, and Aspirin to a heavy antibiotic like Levaquin. Levaquin (fluoroquinolones) drugs actually cross your Brain Barrier.

I think you made my point. Your symptoms started while you were on the drug. All drugs have side effects and you can probably find every conceivable side effect and find at least one person who has experienced it with every conceivable drug. Making the direct correlation weeks or months later is a heavy lift, IMO.

Sallysblooms 05-18-2012 12:05 PM

That would be nice if it was the case most of the time. It is well known though. Sadly, the damage can take a while to show up.

grandma123 05-18-2012 12:05 PM

Quote:

Originally Posted by Sallysblooms (Post 880649)
If only it were simple. My doctors have spoken with me about all of this and they keep trying to find a better medication for next time I need it. Damage can happen later for sure. Not just with Levaquine, so many drugs have terrible effects later. I have read so much about it and spoken with doctors and pharmacists. Not rare at all.

It is important to me to learn from things that happened and do all I can to correct the damage and not repeat. VERY hard since so many meds cause these problems.

I hope you find the help and healing you are seeking. You are a very determined and educated person and that is so important. To be proactive. Good luck.

Sallysblooms 05-18-2012 12:37 PM

Quote:

Originally Posted by grandma123 (Post 880655)
I hope you find the help and healing you are seeking. You are a very determined and educated person and that is so important. To be proactive. Good luck.

Thank you. I have been studying for three years about POTS, since getting it. Autonomic Neuropathy and PN. That is how I got better and keep improving.

With my CFS, that was also important. It is up to us to do the work. I have good doctors, but many doctors know nothing about POTS or CFS.:confused:

grandma123 05-18-2012 12:39 PM

Quote:

Originally Posted by Sallysblooms (Post 880665)
Thank you. I have been studying for three years about POTS, since getting it. Autonomic Neuropathy and PN. That is how I got better and keep improving.

With my CFS, that was also important. It is up to us to do the work. I have good doctors, but many doctors know nothing about POTS or CFS.:confused:

I'm sorry - I'm sure you've explained your diagnoses before but what does POTs and CFS stand for and have you been diagnosed with Autonomic Neuropathy by what kind of doctor?

Sallysblooms 05-18-2012 01:03 PM

CFS is Chronic Fatigue Sydrome. I have had it 20 years, since I was young. It got out of hand because most doctors know nothing about it or supplements. I did find integrative doctors finally.

POTS is a form of Dysautonomia. VERY bad to have. Postural Orthostatic Tachycardia Sydrome. HIGH heart rate when sitting or standing, severe fatigue, nausea, digestion problems, dizzyness, horrendous lightheadedness. Just a few symptoms there. Many faint, but I have Pre Syncope so I know to be careful. I have notice when I will faint.

I have improved thank goodness from being in my wheelchair or bed at all times to being about to walk again.. I just cannot walk for a long time yet. The blood pools, will not stay in the brain and heart. As the nerves continue to heal, they are able to work with the blood vessels and muscles to keep blood up and fight gravity.

I keep track of my heart rate and blood pressure.

I took Levaquin for Diverticulitis three and a half years ago. A few months later I noticed I felt dizzy and faint, but it would go away. Then on my anniversary three years ago, every automatic thing in my body stopped working. Bp, heart rate etc. I had no relief. Ill 24 hours a day. No reg. doctors including cardio docs knew what was wrong.

My integrative doctor tested me and found it was Autonomic Neuropathy. I was too ill to travel to see him for months though. The Autonomic Neuropathy causes half of the POTS illnesses. Only one million or fewer people have this.

I also have PN, often comes wiith the Autonomic Neuropathy. That part is almost gone. You can get much better with POTS, but I have never heard of getting well.

I am thankful for supplements! And doctors that told me to also stop sugar and only eat good carbs for the nerve health also. :D

grandma123 05-18-2012 01:36 PM

Quote:

Originally Posted by Sallysblooms (Post 880676)
CFS is Chronic Fatigue Sydrome. I have had it 20 years, since I was young. It got out of hand because most doctors know nothing about it or supplements. I did find integrative doctors finally.

POTS is a form of Dysautonomia. VERY bad to have. Postural Orthostatic Tachycardia Sydrome. HIGH heart rate when sitting or standing, severe fatigue, nausea, digestion problems, dizzyness, horrendous lightheadedness. Just a few symptoms there. Many faint, but I have Pre Syncope so I know to be careful. I have notice when I will faint.

I have improved thank goodness from being in my wheelchair or bed at all times to being about to walk again.. I just cannot walk for a long time yet. The blood pools, will not stay in the brain and heart. As the nerves continue to heal, they are able to work with the blood vessels and muscles to keep blood up and fight gravity.

I keep track of my heart rate and blood pressure.

I took Levaquin for Diverticulitis three and a half years ago. A few months later I noticed I felt dizzy and faint, but it would go away. Then on my anniversary three years ago, every automatic thing in my body stopped working. Bp, heart rate etc. I had no relief. Ill 24 hours a day. No reg. doctors including cardio docs knew what was wrong.

My integrative doctor tested me and found it was Autonomic Neuropathy. I was too ill to travel to see him for months though. The Autonomic Neuropathy causes half of the POTS illnesses. Only one million or fewer people have this.

I also have PN, often comes wiith the Autonomic Neuropathy. That part is almost gone. You can get much better with POTS, but I have never heard of getting well.

I am thankful for supplements! And doctors that told me to also stop sugar and only eat good carbs for the nerve health also. :D

Wow! You certainly have been through a lot but seem to have found some things that have allowed you to progress. That's good. What are integrative doctors and where do you find them? Are the MD's? Are the symptoms of Autonomic Neuropathy similar to PN? Sorry if you have answered all these questions before.

I still remain skeptic of the "took this and then this happened weeks/months later therefore it was because I took this" mind of thought. But even if that were true, it is my understanding that ideopathic PN is permanent so regardless of what (if anything) caused it (since it is unknown, anyway) - the best one can hope for is to get the rest of their body healthy and hope the symptoms are helped.

echoes long ago 05-18-2012 03:32 PM

Quote:

Originally Posted by grandma123 (Post 880689)

But even if that were true, it is my understanding that ideopathic PN is permanent so regardless of what (if anything) caused it (since it is unknown, anyway) - the best one can hope for is to get the rest of their body healthy and hope the symptoms are helped.

ideopathic pn is not necessarily permanent, or not necessarily anything for that matter. its just cause unknown. there are a few potential causes that can be treated with vast improvement shown. there are people who have posted here, were ideopathic at some point and either later learned what their cause was, or never learned the cause but provided themselves with the tools their body needed to heal nerves and are today almost completely healed and living normal lives. dont give up before you even start.

Sallysblooms 05-18-2012 03:35 PM

Integrative MD's are what I have. They use regular medicine when needed. BUT, they know all kinds of other therapies, foods that are good, supplements to use. :D I have a cold right now and I am using supplements for that also. Yes, medical doctors for sure.

You can look online for doctors in your area or even ask reg. MD's if they know any. Like all doctors, some are a perfect fit and some might not be. Takes a while to find the right one.


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