"Idiopathic" Small Fiber Peripheral Neuropathy
 

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.

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.

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.

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.

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

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.

H1N1Guy
 

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.

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 :eek:

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.

Did the IVIG infusions help at all? Seems like they would have if the neuropathy was autoimmune. I hope you can find some answers.

Lots of people claim those coffee enemas help with their autoimmune diseases. We'll see

Exercise and stretching is imperative and swimming is also great for NP.

Glad you are doing well. Congrats!

Well, I said I'd try anything so if you do have this experience, let me know. You first!

Dear sir,
I'm sorry you find yourself in this situation. It's not fun. Why do you think the H1N1 vaccine caused your PN? Do you know of other cases where this happened? Remember that because two things happen at about the same time does not mean that one caused the other.

I am concerned with you linking your identity with the H1N1 vaccine so strongly that you made it your username. I think you need to let that go, at least for yourself. If you want to be an activist against H1N1 vaccine, I could see that, but I don't see that it matters whether it caused your PN. Possibly unless there is still a substance from that vaccine lingering in your body. A person can get so obsessed with a notion that it blocks progress.

You need to find a competent clinic that is versed in the couple hundred causes of PN, such as Mayo, Cleveland Clinic, John Hayes at NeuropathyDr, & there are others. Have them do their best to find a cause. A general neurologist does not know how to do this. Then you can know you did what you could in this respect.

I like your diet, except I believe you should eliminate animal products all together. Many studies show that they increase risk of chronic disease. You said "My diet consists of 90 percent foods in their natural state," for which I commend you very much, probably better than what I do. What is the other 10%? For example if it were Lucky Charms & corn oil then I am concerned. I have been making a concerted effort to eat a good diet for several years now and I believe it has slowed greatly the progress of the PN. So keep it up. Many books explaining the benefits.

Many of your supplements look great. Remember that not all brands are the same. Sometimes it's not best to get the cheapest. I have found that alpha-lipoic acid and evening primrose oil reduce my pain levels. Possibly the methylcobalamin as well.

Exercise is very important, so don't forget that.
Ron

The neuropathy began within a month of receiving the H1N1 vaccine. It was not immediate and it was only years later that I put these two things together, but the internet is full of tales that are similar to that of my own.

I am having tremendous difficulty letting go and forgiving myself.

I had been going to Vanderbilt University for several years before last year I gave up as nothing was going on except a physical exam and medication renewals. I am getting ready to see another neurologist who has a good reputation in the community. I will hope for the best. I just can't afford to travel out of state to somewhere like Cleveland Clinic.

When I say 90% in relation to food, the other 10% consists primarily of things like crackers and pastas, all of which are organic. I am obsessed with organic and Non-GMO.

If you have any other supplement recommendations of things you are taking I would love to hear them. Perhaps you could recommend some superior vendors. I generally use vitacost and bulksupplements.com.

Guy, If in fact the vaccine caused your PN, you should have no resentment toward yourself, only toward the medical system in the U.S., which is not doing a very good job. I'm sure you thought you were doing the right thing. Just don't get into such a mindset that you ignore other possible causes. Did you say you had your blood sugar tested, and B-12?

Organic and non-GMO is a great idea, but be careful of carbohydrates from processed foods. Not good for you. I have a hard time with this as well. I love sweets, especially dark chocolate and Boston Baked Beans (candy coated peanuts).

You may want to get tested for the toxins found in the H1N1 vaccine to see of they are still in your body. If this is not practical, look into detoxification (detox) techniques, which are widely discussed in health circles. There are coffee enemas, sauna, chelation therapies, Gerson, etc. The most important detox IMHO is a whole food plant based diet. The body already knows how to eliminate toxins, if we give it what it needs and withhold what sabotages the works, such as sugar, animal protein, and processed oils.

I use Jarrow Alpha-Lipoic Sustain (600 mg per day) and TwinLab evening primrose oil (2600 mg per day). I trust these two brands. If you search this forum, there are other brands that others trust. IMHO you don't usually want the cheapest.

See beatingneuropathy.com podcasts. Maybe you are near one of Dr. John Hayes' clinics. He is based in Massachusetts but has several other clinics in the U.S.
Ron

I have had all the tests for glucose intolerance and b-12 levels were good. I'm taking 5000 mcg of methylcobalamin now so this should be no issue at the present. The coffee enemas are something that I plan to start in the next week or so. The premise is sound. The reason I currently juice so much is because of the information contained in the Gerson Therapy. I wish I had both the time and the monetary resources to go full Gerson.

I understand the time, but what is expensive about it? I don't know a great deal about it, but I assume you need to buy a huge amount of organic vegetables for the juice. I would think eating raw whole foods instead of so much juicing would have quite a benefit as well.
Ron

That is the cost....the tremendous amount of organic veggies. I do drink a lot of juice and eat a ton of raw organic veggies.

That's great, this should help. Sounds like you're doing better on this than me. I feel like I don't have time for anything--taking care of the property and helping to get my kids everywhere they need to be. I planted lots of vegetables this year but don't feel like I was eating them very much. Something is wrong here.
Ron

I have spent several hours this week watching Dr Bergman videos. He is really amazing so thanks for that. I am just wondering where to go with all of that information now.

Yes, Dr. John Bergman is amazing with his knowledge of the body, but I think he is a bit off-target about neuropathy. Here is the only video of his I found on neuropathy:

How to Decipher Neuropathy
https://www.youtube.com/watch?v=0JAdAOfJYeM

He has a lot of good info, but doesn't mention genetics in any way. Now, I don't believe genetics necessarily govern our destiny, since generic expression can be controlled by many lifestyle factors, but it deserves mention. When you see neuropathy being inherited, there is very likely something going on there that is not environmental. I listened to this about three times, and and I didn't catch anything about diabetes or vitamin B-12 deficiency, two of the top causes of neuropathy, so something is amiss.

Here are some notes from the video:

He talks a bit about the cause of Parkinson's Disease and (indirectly) how he can reverse it at times.

He talks about several neurotoxins in our environment, including artificial sweeteners, aluminum hydroxide (in vaccines), flu shots, GMOs, MSG, fluoridated water, cholesterol-lowering drugs.

"Peripheral means away from the center. Neuropathy means nerve problem, that's all it means."

paraphrased: "Diagnoses are not diseases, they are descriptions of the body adapting to a deficiency or toxicity."

"Why is there an epidemic of neuropathies? It's from the vaccinations, the flu shots, the genetically modified foods, the medications, I mean literally not respecting the human body."

"If you have a neuropathy, should you be 100% organic and plant based? Yes or yes. Should you get off the cholesterol and the blood pressure, and the neurontin, and all the other medications that they pass out to deal with of the symptoms?"

"Prescription drugs, the right drug at the right time at the right dosage for the right diagnosis kills 106,000 people a year."

He is very anti-drug. I wonder if he would still be against our pain-relieving drugs if he were in constant pain.

"Nerves regenerate at about 1 mm per month."

"The constant stimulation of the body into the brain heals the nerve and can regenerate the tissue."

"Plants--I'm talking just asparagus, fruits, oranges, cantaloupes, fantastically good for the nervous system." He says this in relation to a Parkinson's study in Journal of Neurochemistry 2002;80:101-110, "Dietary folate deficiency and elevated homocysteine levels endanger dopaminergic neurons in models of Parkinson's disease", http://www.ncbi.nlm.nih.gov/pubmed/11796748

Electron

Idiopathic PN
 

Electron,

I appreciate your input on this topic as you seem knowledgeable and open minded. I also like what discussion has taken place and the struggle people are engaged in to over come their condition.

I tend to be optimistic about reversing most conditions that ail people as long as they are willing to make changes and they make them sooner rather than later.

In my case my conscious awareness of PN began in August of this year for no apparent reason at the age of 62 and has moved from my feet to my thighs. I had a complete physical with blood tests and everything came out fine. I am in otherwise good health, exercise and eat healthy in my opinion.

I followed with a CT scan of the lower spine with a neurologist and nerve conduction and electromyleogram. I showed basically no reading in nerve response yet I still have feeling in my legs and my reflexes are present.

One thing you said about eating an animal diet which I do almost 100% intrigued me. I have read extensively about the pros and cons and so far in my opinion it is a superior diet. Curious what doctors, researchers or studies have caused you to believe the way you do. I am not interested in proving one way or the other correct, just curious.

I have been reading many of the people you referenced that understand PN and plan on working with someone next year to put this in check if possible. I have no interest in living with this condition fro the remainder of my life and can only hope I don't have to.

I hope people will continue to post information and any progress or success they have in overcoming this strange condition.


Dious

Please see my post here: http://neurotalk.psychcentral.com/post1041258-10.html
And here: http://neurotalk.psychcentral.com/post1035130-34.html

These present my position on healing and list many of the authors who have influenced me.

I also like Dr. Michael Greger. He has all the evidence one could want. See here: http://nutritionfacts.org/topics/plant-based-diets/

"The convergence of evidence suggests that an affordable plant-based diet can help prevent and even reverse many of the top killers in the Western world..."

"This is in part because plant foods contain anti-aging, anti-cancer antioxidants (on average 64 times more than animal foods, see also here, here, here, here, here, here), fiber, and phytochemicals, which in some cases can even help repair DNA damage..."

"Eating meat and other animal products is associated with weight gain (even after controlling for calories), a shortened lifespan, and other negative effects (such as premature breast development of young girls). Arachidonic acid in chicken and eggs may cause inflammation, increasing one’s risk for a variety of disorders including mood disturbances thought due to inflammation of the brain. On the other hand, many plant foods (especially potassium-rich foods) appear to reduce inflammation..."

Also you can google "evidence for plant based diet". Here is one study near the top of the list:

Nutritional Update for Physicians: Plant-Based Diets
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3662288/

Here is a major study, the Cornell-China-Oxford project, which was undertaken to explore the effects of diet on health in China: http://web.archive.org/web/200902232.../ChinaProject/

A quote from the Results page of that site:
"A variety of specific disease, nutrient and biomarker associations have been investigated. Virtually all support the idea that nutrients usually present in plant based foods minimize the occurrence of chronic degenerative diseases."

Probably the most influential health information that I have read is from the book The China Study that T. Colin Campbell wrote about this study (although the book is much more than just describing that one project). I highly encourage everyone to read it. I will try to come up with a list of some of the other major studies listed in the books that I have read.

Please let us know why you believe that eating an animal based diet is superior to a plant based one.

I hope we can all heal. Let's get to it. I have to drop the junk food. :(
Ron