[H1N1Guy]

This is my first time posting in the forums. I have been struggling with neuropathy since 2009. I firmly believe that my neuropathy is linked to the H1N1 vaccine that I received that year. It began with one foot falling asleep, waking up, then back to sleep, permanently asleep, both asleep, numb on bottoms, then tingling and burning on the tops. Five years later I suppose i'm lucky (I guess that is relative) that it is only now beginning to creep up beyond the ankles. I function fairly well most of the time, and probably have less pain that most judging by reading the other posts on the forums. But I won't lie...those posts scare me.

In the past few weeks my neuropathy has spread again above the ankles a bit. I have done everything in my power to prevent this from happening. After meeting with two different neurologists in 2010 I knew that all they could provide for me was prescription drugs and no real answers. I was told I have had pretty much every test done (which I now believe is not true), and that no cause could be determined. No one has ever seemed interested in really digging into the cause, nor believing that the H1N1 vaccine has caused me and my family so much anguish. In the past five years I have spent untold hours online educating myself about this disease. A list of some of the things I have done which have helped:

1 . I reached my ideal weight (lost 70lbs)
2. Went on a STRICT diet in which:
- I eat 90 percent organic
- I avoid GMO foods
- I avoid processed sugars, sodas, etc
- I purchased a juicer and make fresh vegetable juices daily
- I consume one "Amazing Grass ORAC powder" drink daily
- My diet consists of only 5 percent meat
- My diet consists of 90 percent foods in their natural state (non-processed)
3. A supplement regimen consisting of:
- Acetyl L carnitine 2000 mg twice daily
- Agmatine (dose varies - there are currently clinical studies underway which initially suggest that agmatine may help with neuropathic pain).
- St Johns Wort 600 mg twice daily
- Sam-E 200 mg daily
- Alpha Lipoic Acid 600 mg twice daily
- N Acetyl Cystine 600 mg at bedtime
- Turmeric Curcumin (tons and tons of this!)
- Cayenne capusles multiple times per day
- Skullcap capsules multiple times per day
- Methylcobalamin 5000 mcg daily
- Vitamin D 5000 once daily
- Cats Claw 1000 mg daily
- Natural Care Nerve Fix (I love this product, it helps a lot) 2 pills twice daily
4. Gabapentin 3200 mg daily
5. Capsaicin Cream and Lidocaine Patches as needed
6. Herbal teas as needed consisting of corydalis yanhusuo (this was on Dr. Oz), valerian root, passionflower, blue vervain, california poppy, etc

At any rate, while I believe that all of these things have collectively benefited me greatly, I am still losing this battle. I know that so many are, I just really felt like I had a handle on this. The fight has been exhausting. Now that it is spreading I find myself wondering what more can I do. I am considering going to another neurologist and exploring the possibility of this being autoimmune in nature (which is possible if it is indeed vaccine induced). I can't just sit by while this disease slowly consumes me.

Well, thanks for listening. I'm really just here for support I guess. And if anyone has any suggestions, of course i'd love to hear those as well. I just can't do this alone anymore. I have driven my poor wife crazy! Thanks.

[beatle]

I too believe my PN is autoimmune and possibly related to the flu or a vaccine (had both just prior to the onset). Everything else has been ruled out.

Unfortunately, nothing regenerates the nerves and in my case, the NP is replaced by more and more numbness. Sorry I am not optimistic today.

[H1N1Guy]

Originally Posted by beatle

I too believe my PN is autoimmune and possibly related to the flu or a vaccine (had both just prior to the onset). Everything else has been ruled out.

Unfortunately, nothing regenerates the nerves and in my case, the NP is replaced by more and more numbness. Sorry I am not optimistic today.

I am rarely optimistic so I do get that. You should check out this research study I have attached. Based upon all my personal research I believe that my immune system is attacking my nerves. The H1N1 shot was a nasty dude (do some googling and you'll see what I mean. But yes even regular flu shots can do that. I'm curious as to whether you have really pushed that possible link with your neurologist.

[H1N1Guy]

Originally Posted by H1N1Guy

I am rarely optimistic so I do get that. You should check out this research study I have attached. Based upon all my personal research I believe that my immune system is attacking my nerves. The H1N1 shot was a nasty dude (do some googling and you'll see what I mean. But yes even regular flu shots can do that. I'm curious as to whether you have really pushed that possible link with your neurologist.

Ok so my pdf was edited out. You will have to go to the Neuropathy Association site and look up info on the autoimmune neuropathy studies. Sorry about that.

[Joano]

I noticed that Curcumin is one of the supplements you take. Dr. Blaylock, a retired neuro surgeon who now researches neuro problems, also recommends curcumin, but says it is really hard to absorb. He recommends opening the capsule and desolving the granules in a little virgin olive oil to help it absorb better--but he warns that it's messy and will stain the surface of your counter top so be careful.

[H1N1Guy]

I do have a tremendous respect for Dr. Blaylock I just wish he spoke more to neuropathy directly. Thanks for the advice.

[beatle]

Early on in my disease I was eager to pinpoint the cause and was told by more than one neuro that it didn't matter since there is no cure. They said we have done the testing to rule out everything and yours is idiopathic. They dismissed my alcohol use (which I learned was not excessive), my vegan lifestyle and vaccines. By the way, I also had a pneumonia and tetanus vaccine simultaneously prior to the time that I acquired the PN. No matter what I said or how much I speculated, it was met with the same reply: that we will never know and it doesn't matter because there is no cure.

[greggreyes]

I had the very same experience as yours, except my pain and numbness crept up fro my feet to my buttocks in a matter of weeks. I've had 3 IVIG infusions and every test possible and still the doctors at Kaiser don't know whether my peripheral neuropathy is caused by an auto-immune disorder. I was also told that high blood sugar over a period of a few years can cause PN. Apart from Gabapentin and Vit D 3, I take insulin. I am now trying out The Institute for Health & Healing in San Francisco (**) and met with an Ayurvedic Dr. Akil Palanisamy. His first suggestion was to take stool tests to find out the condition of my gut. If your organs aren't functioning well they have difficulties in processing whatever you are ingesting. My aim is to slowly eliminate Gabapentin and Insulin (all meds) as these can also damage your organs. All this stuff and some herbs are very potent and may not mix well together.
One thing I've been doing recently, is to constantly massage and rub all the numb and painful areas with my hands (which are also numb and in pain) and I've noticed that my feet are looking more and more normal. My hands and fingers are able to write clearer and clearer, when at one time, I couldn't even hold the pen! Constant and varied exercises and activity may awaken damaged veins and nerves. This week, I am going swimming for the first time. I'll let you know how the Ayurvedic treatment and all this massaging and exercising works.

[H1N1Guy]

Originally Posted by beatle

Early on in my disease I was eager to pinpoint the cause and was told by more than one neuro that it didn't matter since there is no cure. They said we have done the testing to rule out everything and yours is idiopathic. They dismissed my alcohol use (which I learned was not excessive), my vegan lifestyle and vaccines. By the way, I also had a pneumonia and tetanus vaccine simultaneously prior to the time that I acquired the PN. No matter what I said or how much I speculated, it was met with the same reply: that we will never know and it doesn't matter because there is no cure.

I guess for me I just want some proof that it was the vaccine. I mean, I know it was but I need to see it on paper as a vindication I suppose. If I can demonstrate it I is autoimmune then there will be a few more treatment options at least.

I am seriously considering doing the Gerson Therapy as there has been some success with MS which is an autoimmune disease as well.

Grasping at straws I guess but what else am I to do?

[beatle]

Originally Posted by H1N1Guy

I guess for me I just want some proof that it was the vaccine. I mean, I know it was but I need to see it on paper as a vindication I suppose. If I can demonstrate it I is autoimmune then there will be a few more treatment options at least.

I am seriously considering doing the Gerson Therapy as there has been some success with MS which is an autoimmune disease as well.

Grasping at straws I guess but what else am I to do?

Hey, I get it. I totally understand where you are coming from. Gerson Therapy is super healthy, not sure about those coffee enemas though

I too hoped that something would point to something with one of the tests...and I did them all. At this point, I just wish science could move much faster.