COVID vaccines and neuropathy

Posted by cue @cue, Feb 15, 2021

I am 85 with small fiber neuropathy that is getting worse. My neurologist thought it would be a good idea for me to wait with the covid vaccine and not be first in line to see how it affected other people with neuropathy. Probably because it is a new technology. Has anyone had a problem with neuropathy after receiving the vaccine? If so, which vaccine?

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@dhamil

Thank you. I believe trying to maintain a positive outlook is very beneficial and I found walking is too.
The yoga nidra meditation sounds like a good thing for me to try. Would you mind sharing a link to the one you do? I wish you continued good health.

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You’re welcome. Yes, staying positive is very important. I needed to believe that I was healing. The video that I used was Lizzy Hill 20 Minute Yoga Nidra. You can access it through YouTube. I hope it will be something you can use. All the best to you.

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Interesting medical video. Sounds all too familiar to me.


Long COVID:
* Fatigue
* Depression
* Memory Problems

Adverse Reactions to Vax:
* Brain fog
* Cognitive issues
* Memory
* Transverse Myelitis

Lucky me. I have all of the above.

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@detc

I developed peripheral neuropathy in December 2021 after my first Moderna booster at the end of October 2021. At the time of onset, I could barely walk. As of early October 2022, I was walking and hiking three miles a day and was completely off of Gabapentin. On Thursday, I had an EMG test. The results were better than I could have imagined. My nerves are completely healed. The health of my nerves is excellent. I’m truly grateful for this turnaround. I feel very blessed to have come through this experience, back to my former good health. My doctor believes that my neuropathy was likely caused by an extreme inflammatory response to an overreaction of my immune system to my first booster. She has suggested a short term prescription for steroids if I have any future, immune response overreactions to medical conditions or at the first sense of a recurrence of any tingling or numbness. The suppression of the immune response by the steroids might keep my immune system from attacking my nerves again. The sole reason that I’m posting this is to let people know, that in some cases, healing is possible. I realize that everyone is different and that not everyone will come through this the way I have, but when I read of the frustration and desperation from so many similar cases, I hope that maybe this will help someone to feel a little better. To feel that there might be hope for resolution to their situation. I was extremely fortunate to have a wonderful doctor who heard me, believed me, and has done all that she can to see me through to this day. She gave me hope from the day I met her. We have a plan in place for any future problems. Knowing that and having such good results from the EMG gives me peace of mind. I wish that for all of you.

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Who is your doctor and is she/he taking new patients?

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Her name is Dr. Barbara Merriman at the Cleveland Clinic in Cleveland, Ohio. She is taking new patients. She is a neurologist.

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@summerrose

Hi, and sorry for my english, it's not my mother tongue.
I was floxed with Cipro nearly four years ago, and my tendons have never returned the same.
After my first Pfizer shot, I've had a bad neuropathy on both hands and fingers (never experienced before) and I thought it could be connected with the flox. Perhaps something in my floxed cells is not working as it should do.
The neuropathy is not over (4 weeks have passed): I'm taking some supplements and the pain is better, but my hands are still suffering.
Wednesday I'll have my second Pfizer shot and I'm concerned...

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I was given Cipro and Falgyl intravenously and then pills after I was hospitalized with a gastrointestinal bleed after a colonoscopy. I have never been "normal" since. I just stumbled upon the "floxed" malady of FQAD.

I am in terrible pain in my muscles and tendons, fatigued, I can't sleep, have gastrointestinal issues, facial pain and my "merry -go-round" of doctors are baffled because they have not caught up with the entire FQAD train wreck.

Just now starting to seek help. I feel your pain!

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@jboett

Has anyone that has experienced long term effects from ciprofloxin leading to the FQAD Syndrome had increase of peripheral neuropathy pain or more incidents of brain fog , hallucinations after COVID vaccine ? I have been living with FQAD since multiple uses of ciprofloxin for kidney stone surgeries from 2007-2013 both via pills and IV. Also due to being Floxed instead of my tendon rupturing in my ankle etc I had an emergency retina detachment surgery in 2014 to save my vision . As part of the antibiotics given for left eye surgery I was given oflaxin which caused hallucinations , heart palipitations etc. Needless to say I had a lot of this drug which now I am paying for later in life . Constant neuropathy pain left extremities , mood swings and frequent brain fog episodes . I believe my dna markers have been affected so much coupled with more intense neuropathy pain after Pfizer vaccine , perhaps the FQ impacts and proteins in COViD immune model are not liking each other. It would be nice to know if anyone with FQAD are experiencing similar experiences .

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I feel your pain. This is my story-

Hello ! I am Mary and am 76 years old. This is the part of my story that focuses on the possibility of fluoroquinolone-associated disability (FQAD) and my chronic pain.

Prior to a medical event in August of 2019, I lived an active life that included traveling, hiking, gardening, attending outdoor music festivals, hosting events, and extensively interacting with my husband, children & grandchildren.

Today, I am lucky to walk 50 yards to the mailbox and back. I suffer from body wide pain in muscles & tendons & trigger points. The debilitating pain moves around depending on what simple activity I might have engaged in but there is a general focus in my intercostal nerve network, neck, lower back, legs and feet. I have gastrointestinal discomfort. I have swollen and aching sinuses. I am dizzy. I am profoundly fatigued.

I no longer shop, drive, or participate in any trips and planned activities. I mostly turn out the lights and sit on the sofa.

I have spent 4 years on the “medical merry-go-round” visiting specialist after specialist with no clear-cut diagnosis much less a successful treatment plan. I could list the medical focus areas if that helps the dialog.

This is the short version of an extensive medical history and treatments as I want to start a dialog about the possibility that all my un-diagnosed medical issues over the last 4 years are associated with fluoroquinolone-associated disability (FQAD)

In August of 2019, I was hospitalized with a gastrointestinal bleed following a routine colonoscopy.
During the hospital stay I received :

• ciprofloxacin (generic for CIPRO) IVPB 400 mg [36899745]
o from 7/31/2019 – 8/3/2019
o 400 mg delivered every 12 hours for 60 minutes

• metroNIDAZOLE in NaCl (generic for FLAGYL) premix IVPB 500 mg [36899746]
o from 7/31/2019 – 8/3/2019
o 500 mg delivered every 6 hours for 60 minutes.

After discharge I received:

• ciprofloxacin 500mg tablet
o Commonly known as: generic for CIPRO
o 1 tablet (500 mg total) by mouth 2 (two) times a day for 7 days.

• metroNIDAZOLE 250mg tablet Commonly known as: generic for FLAGYL
o 1 tablet (250 mg total) by mouth 3 (three) times a day for 7 days.

I never really recovered from that trip to the hospital. The symptoms just get more varied and more intense. There are no flares & remissions just ongoing chronic distress. I stumbled upon the findings of FQAD and am interested in what others have to say,

Could FQAD be the “behind the curtain” root-cause of my torment and just have not surfaced in my search for help?

Thanks for reading my story and I look forward to your responses.

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@mlm666

I feel your pain. This is my story-

Hello ! I am Mary and am 76 years old. This is the part of my story that focuses on the possibility of fluoroquinolone-associated disability (FQAD) and my chronic pain.

Prior to a medical event in August of 2019, I lived an active life that included traveling, hiking, gardening, attending outdoor music festivals, hosting events, and extensively interacting with my husband, children & grandchildren.

Today, I am lucky to walk 50 yards to the mailbox and back. I suffer from body wide pain in muscles & tendons & trigger points. The debilitating pain moves around depending on what simple activity I might have engaged in but there is a general focus in my intercostal nerve network, neck, lower back, legs and feet. I have gastrointestinal discomfort. I have swollen and aching sinuses. I am dizzy. I am profoundly fatigued.

I no longer shop, drive, or participate in any trips and planned activities. I mostly turn out the lights and sit on the sofa.

I have spent 4 years on the “medical merry-go-round” visiting specialist after specialist with no clear-cut diagnosis much less a successful treatment plan. I could list the medical focus areas if that helps the dialog.

This is the short version of an extensive medical history and treatments as I want to start a dialog about the possibility that all my un-diagnosed medical issues over the last 4 years are associated with fluoroquinolone-associated disability (FQAD)

In August of 2019, I was hospitalized with a gastrointestinal bleed following a routine colonoscopy.
During the hospital stay I received :

• ciprofloxacin (generic for CIPRO) IVPB 400 mg [36899745]
o from 7/31/2019 – 8/3/2019
o 400 mg delivered every 12 hours for 60 minutes

• metroNIDAZOLE in NaCl (generic for FLAGYL) premix IVPB 500 mg [36899746]
o from 7/31/2019 – 8/3/2019
o 500 mg delivered every 6 hours for 60 minutes.

After discharge I received:

• ciprofloxacin 500mg tablet
o Commonly known as: generic for CIPRO
o 1 tablet (500 mg total) by mouth 2 (two) times a day for 7 days.

• metroNIDAZOLE 250mg tablet Commonly known as: generic for FLAGYL
o 1 tablet (250 mg total) by mouth 3 (three) times a day for 7 days.

I never really recovered from that trip to the hospital. The symptoms just get more varied and more intense. There are no flares & remissions just ongoing chronic distress. I stumbled upon the findings of FQAD and am interested in what others have to say,

Could FQAD be the “behind the curtain” root-cause of my torment and just have not surfaced in my search for help?

Thanks for reading my story and I look forward to your responses.

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Sorry to hear about your situation. I am 64 years old male having similar conditions plus small fiber neuropathy. Have tried all kinds of therapies and remedies with no positive outcome. Although my neuropathy has been labelled as "ideopethic" I am convinced that it is induced by cipro which was prescribed to me by a physician for a minor UTI issue in 2017. I used to run 20 kilometers every day prior to being floxed but today I can hardly walk from my bed to bath room. My quality of life is zero. There is a Facebook group on fluoroquinolones toxicity. I suggest you join that group. You will find a lot of useful information on what others are doing with similar conditions.

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@shara

My pn started after my 1st Moderna Covid shot. I’ve had 5 shots with increasing pain and spreading of pn. Now my inclination is to not get the next shot when it’s available. The question is what’s going to kill me, Covid or neuropathy!

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Same here, but I had 'only' 4 shots. The thing that will finally kill us is life 😉
Not neuropathy- although the pain makes you wish sometimes that you were dead.
My wish is that companies wil improve the vaccins for people with a weaker nervous system and/or strong auto-immune reactions. By now they have enough evidence that the vaccines can do damage among many people.

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@nukhan

Sorry to hear about your situation. I am 64 years old male having similar conditions plus small fiber neuropathy. Have tried all kinds of therapies and remedies with no positive outcome. Although my neuropathy has been labelled as "ideopethic" I am convinced that it is induced by cipro which was prescribed to me by a physician for a minor UTI issue in 2017. I used to run 20 kilometers every day prior to being floxed but today I can hardly walk from my bed to bath room. My quality of life is zero. There is a Facebook group on fluoroquinolones toxicity. I suggest you join that group. You will find a lot of useful information on what others are doing with similar conditions.

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Thank You! I will look into the FB Group/

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@detc

You’re welcome. Thank you for your kind words. I’m happy that your symptoms are improving and hoping that your next EMG will show improvement in your nerve health. My doctor’s theory is that the damage to my nerves happened in the Myelin Sheath, which is a protective insulation around the nerves, more so than the “wiring” part of nerves themselves.
We did discuss a possible resurgence of the neuropathy from a case of Covid. I would take Paxlovid as a treatment and if any neuropathy symptoms began, she would definitely start me on a short term course of steroids to stop my immune system from going out of control. The sooner the symptoms would be addressed, the better the chance would be of limiting that inflammatory response that probably caused the neuropathy. Good luck.

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Thank you. That's very helpful information. Do you mind sharing the state where you live? Your doctor seems fantastic!

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