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Post-Flu Vaccine Neuropathy (Possible Small Fiber Neuropathy)

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Old 01-31-2014, 04:17 PM   #1
tarheel15
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Default Post-Flu Vaccine Neuropathy (Possible Small Fiber Neuropathy)

I have had 15 months of progressive burning pain all over my body (mostly in extremities) since having a flu vaccine in Oct 2012. Burning is worse with activity, and warm and cold extremes, tight clothing etc.. Also I have noticed recently that accupuncture makes it worse.

I have had extensive neurological workup, including multiple MRIs, EMGs, NCV, LP and Therapath skin biopsy. The biopsy was done 1 year ago and showed normal nerve fiber density and sweat glands.
A new symptom over the past 3 months has been severe fatigue and insomnia along with depressed mood. I have tried numerous medications and cannot tolerate much with exception of Neurontin. I have been on methyl-b12/folate since the beginning with a recent b12 level of 1400. I am also taking vitamin D3. I could not tolerate SSRIs and SNRI meds or Lyrica.
The fatigue and insomnia have gotten so bad that I've had to go on medical leave from work (I am a physician myself).

My integrative doc wants me to take a supplement called Nuvoxil (which has L-tryptophan, l-theanine, taurine) to help with sleep and mood. She also wants me to switch to Methyl-b12 subcutaneous injections.
I am confused as to what to do:
1. Do I ask my neurologist to repeat a skin punch biopsy to look again for SFN since it's been 1 year?
2. Do I consider IVIG?
3. Any other nutritional/supplement recommendations - esp. for the severe fatigue and insomnia?
4. Would things like d-ribose or acetyl-l-carnitine help? I've been reading Dr. Teitelbaum books.

Thank you so much.
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Old 02-01-2014, 01:46 PM   #2
hopeful
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Quote:
Originally Posted by tarheel15 View Post
I have had 15 months of progressive burning pain all over my body (mostly in extremities) since having a flu vaccine in Oct 2012. Burning is worse with activity, and warm and cold extremes, tight clothing etc.. Also I have noticed recently that accupuncture makes it worse.

I have had extensive neurological workup, including multiple MRIs, EMGs, NCV, LP and Therapath skin biopsy. The biopsy was done 1 year ago and showed normal nerve fiber density and sweat glands.
A new symptom over the past 3 months has been severe fatigue and insomnia along with depressed mood. I have tried numerous medications and cannot tolerate much with exception of Neurontin. I have been on methyl-b12/folate since the beginning with a recent b12 level of 1400. I am also taking vitamin D3. I could not tolerate SSRIs and SNRI meds or Lyrica.
The fatigue and insomnia have gotten so bad that I've had to go on medical leave from work (I am a physician myself).

My integrative doc wants me to take a supplement called Nuvoxil (which has L-tryptophan, l-theanine, taurine) to help with sleep and mood. She also wants me to switch to Methyl-b12 subcutaneous injections.
I am confused as to what to do:
1. Do I ask my neurologist to repeat a skin punch biopsy to look again for SFN since it's been 1 year?
2. Do I consider IVIG?
3. Any other nutritional/supplement recommendations - esp. for the severe fatigue and insomnia?
4. Would things like d-ribose or acetyl-l-carnitine help? I've been reading Dr. Teitelbaum books.

Thank you so much.
Hi Tarheel,
I don't see why you shouldn't ask for another skin biopsy. As you know, there is little pain with the process. Also my understanding is the is relatively small risk of infection.
I use melatonin for sleep. I'm not familiar with Nuvoxil. When I originally was diagnosed with SFN my neurologist had me try Elavil. It aids in sleep and helps with depression. Just a suggestion. I stopped taking it because I was too tired the next day.

I then started Cymbalta for the nerve pain and it worked. Have u tried this SSRI?
Unfortunately, I have come to the conclusion that fatigue is part of all this and is not going away. Have you had your thyroid tested?

If IVIG is being offered to you. Have your doctor apply to your insurance for it. It may take a while to get it approved. In the mean time you can do your research on it. Most research states that the sooner you begin the treatment for neuropathy the better the results. I do get IVIG once a month. It does not last very long. Maybe ten days. The most significant result for me is help with leg weakness.

Mrs. D will be the best to offer all the supplements. I personally take R lipoic acid , CoQ10, Krill oil.

I hope this helps a little. I know how hard it is to be in the medical field and not be able to figure this all out. I am a nurse and that has always driven me crazy. I have had SFN for 6 years now. I have been on IVIG for about 8 months. I think probably not early enough.

I hope this helps. Keep coming to the site. Even if you don't want to write there is a lot of good information to read. You are at the right place
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Old 06-17-2014, 09:40 PM   #3
Posada
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Default High Dose Flu vaccine for 65 and over

I had the vaccine on Sept 14 2012 and 10 day after developed the same symptoms as you. I have been to many different Dr's both traditional and alternative. I spent two weeks at the Mayo Clinic in Rochester NY. After all sorts of tests paresthesia was the diagnosis. They also found a very small tumor on my left lung and thought that since I had the feelings of burning all over my body and a feeling of wetness over the periphery of my face the tumor should be removed as perhaps it was malignant or pressing on something. I had the tumor removed in February 2013 and it was benign and did not solve the problem. None of the meds, acupuncture, vitamin therapy, pain management have worked. This condition has also caused hypertension.

I was a perfectly healthy women before the high dose vaccine. I have now moved into an independent living facility with my husband in Florida and seeing a neurologist at the Cleveland clinic. She has been very honest with me and said I have SFN. She said that it is something I have to live with and we continue to try drugs which perhaps the most I could hope for would be a 50% reduction of discomfort.

If you have had any success since your posting I would appreciate hearing about it
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Old 06-18-2014, 10:06 AM   #4
Kitt
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Welcome Posada.
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Old 06-18-2014, 10:23 AM   #5
Posada
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Welcome Posada.
You sound like my Dr. Thanks for reply.
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Old 06-18-2014, 11:25 AM   #6
mrsD
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Treatment for vaccine injury sometimes involves steroids.
Careful use may be an option.

We had a poster here from Canada who was given a double vaccination for Swine Flu, (in the recent past), by accident. He had a severe neuropathy from this.
His doctor treated him with steroids to suppress the autoimmune storm.

You might Google "treatments for vaccine injury" to see what others have done. But the traditional medical community is not up to date on this problem. There is considerable denial.
Vaccines somehow activate autoimmune reactions in some people who have a genetic tendency to have them.

Dr. Blaylock MD explains this in his YouTube videos. The primary suspect remains to be the adjuvants included in the vaccines, and/or any viral contamination from poor manufacturing techniques.
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Old 10-15-2014, 11:55 PM   #7
H1N1Guy
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I believe that many neuropathies labeled "idiopathic" are vaccine induced. I received the H1N1 vaccine in 2009 and have been battling this condition ever since. It is very frustrating because doctors are dismissive. Honestly, I have done more for my own treatment than any MD. I am exhausted from spending hour upon hour day after day doing all the research to put this all together and create battle plans. Also if anyone knows of a good neurologist (please don't say Vanderbilt) in Tennessee please let me know.

It's kind of my mission to warn people of the dangers of vaccines. I can frequently be found near the walk in clinic of my local supermarket warning others. So mad at myself for getting that shot in 2009. I just can't let it go.
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Old 10-16-2014, 07:17 AM   #8
Posada
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Quote:
Originally Posted by H1N1Guy View Post
I believe that many neuropathies labeled "idiopathic" are vaccine induced. I received the H1N1 vaccine in 2009 and have been battling this condition ever since. It is very frustrating because doctors are dismissive. Honestly, I have done more for my own treatment than any MD. I am exhausted from spending hour upon hour day after day doing all the research to put this all together and create battle plans. Also if anyone knows of a good neurologist (please don't say Vanderbilt) in Tennessee please let me know.

It's kind of my mission to warn people of the dangers of vaccines. I can frequently be found near the walk in clinic of my local supermarket warning others. So mad at myself for getting that shot in 2009. I just can't let it go.
I don't know how to use this site. I do look at it regularly for answers. The high dose Fluzone I received in September 2012 has taken my life away from me. I burn every day. The pain is exactly how it was when it started 10 days after the vaccine was administered. I burn in my face arm and legs.it feels like I am on fire. I too have done lots of research and all kinds of natural remedies and conventional medicine. I have had every test imaginable None of the treatments have worked. Now the latest suggestion has been the use of opiates. I have seen many neurologists. The latest one at the Cleveland Clinic and her answer was that I have to consider this condition as the new me. I have more to tell keep in touch. I am not ready to give into opiates

Last edited by Posada; 10-16-2014 at 09:03 AM. Reason: More information.
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Old 10-16-2014, 09:06 AM   #9
Posada
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Default Robotic Laser Therapy for pain

I am now having Robotic Laser Therapy. So far no change. I am doing a lot of praying as it's difficult to go on living day after day like this.
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Old 10-16-2014, 09:09 AM   #10
mrsD
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Quote:
Originally Posted by H1N1Guy View Post
I believe that many neuropathies labeled "idiopathic" are vaccine induced. I received the H1N1 vaccine in 2009 and have been battling this condition ever since. It is very frustrating because doctors are dismissive. Honestly, I have done more for my own treatment than any MD. I am exhausted from spending hour upon hour day after day doing all the research to put this all together and create battle plans. Also if anyone knows of a good neurologist (please don't say Vanderbilt) in Tennessee please let me know.

It's kind of my mission to warn people of the dangers of vaccines. I can frequently be found near the walk in clinic of my local supermarket warning others. So mad at myself for getting that shot in 2009. I just can't let it go.
While I am sorry you have had to deal with this problem, I am grateful you are here to spread the word, for others. Thank you for posting.
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These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
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