advertisement
Reply
 
Thread Tools Display Modes
Old 10-16-2014, 12:15 AM #11
H1N1Guy H1N1Guy is offline
Junior Member
 
Join Date: Oct 2014
Location: Tennessee
Posts: 41
10 yr Member
H1N1Guy H1N1Guy is offline
Junior Member
 
Join Date: Oct 2014
Location: Tennessee
Posts: 41
10 yr Member
Default

Quote:
Originally Posted by greggreyes View Post
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.
Did the IVIG infusions help at all? Seems like they would have if the neuropathy was autoimmune. I hope you can find some answers.
H1N1Guy is offline   Reply With QuoteReply With Quote

advertisement
Old 10-16-2014, 12:18 AM #12
H1N1Guy H1N1Guy is offline
Junior Member
 
Join Date: Oct 2014
Location: Tennessee
Posts: 41
10 yr Member
H1N1Guy H1N1Guy is offline
Junior Member
 
Join Date: Oct 2014
Location: Tennessee
Posts: 41
10 yr Member
Default

Quote:
Originally Posted by beatle View Post
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.
Lots of people claim those coffee enemas help with their autoimmune diseases. We'll see
H1N1Guy is offline   Reply With QuoteReply With Quote
Old 10-16-2014, 12:27 AM #13
beatle's Avatar
beatle beatle is offline
Member
 
Join Date: Nov 2013
Posts: 424
10 yr Member
beatle beatle is offline
Member
beatle's Avatar
 
Join Date: Nov 2013
Posts: 424
10 yr Member
Default

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

Glad you are doing well. Congrats!
beatle is offline   Reply With QuoteReply With Quote
Old 10-16-2014, 12:31 AM #14
beatle's Avatar
beatle beatle is offline
Member
 
Join Date: Nov 2013
Posts: 424
10 yr Member
beatle beatle is offline
Member
beatle's Avatar
 
Join Date: Nov 2013
Posts: 424
10 yr Member
Default

Quote:
Originally Posted by H1N1Guy View Post
Lots of people claim those coffee enemas help with their autoimmune diseases. We'll see
Well, I said I'd try anything so if you do have this experience, let me know. You first!
beatle is offline   Reply With QuoteReply With Quote
Old 10-16-2014, 09:59 PM #15
Electron's Avatar
Electron Electron is offline
Member
 
Join Date: May 2010
Location: Oklahoma USA
Posts: 263
10 yr Member
Electron Electron is offline
Member
Electron's Avatar
 
Join Date: May 2010
Location: Oklahoma USA
Posts: 263
10 yr Member
Default

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
Electron is offline   Reply With QuoteReply With Quote
Old 10-17-2014, 11:03 PM #16
H1N1Guy H1N1Guy is offline
Junior Member
 
Join Date: Oct 2014
Location: Tennessee
Posts: 41
10 yr Member
H1N1Guy H1N1Guy is offline
Junior Member
 
Join Date: Oct 2014
Location: Tennessee
Posts: 41
10 yr Member
Default

Quote:
Originally Posted by Electron View Post
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.
H1N1Guy is offline   Reply With QuoteReply With Quote
Old 10-20-2014, 10:22 AM #17
Electron's Avatar
Electron Electron is offline
Member
 
Join Date: May 2010
Location: Oklahoma USA
Posts: 263
10 yr Member
Electron Electron is offline
Member
Electron's Avatar
 
Join Date: May 2010
Location: Oklahoma USA
Posts: 263
10 yr Member
Default

Quote:
Originally Posted by H1N1Guy View Post
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
Electron is offline   Reply With QuoteReply With Quote
Old 10-20-2014, 06:31 PM #18
H1N1Guy H1N1Guy is offline
Junior Member
 
Join Date: Oct 2014
Location: Tennessee
Posts: 41
10 yr Member
H1N1Guy H1N1Guy is offline
Junior Member
 
Join Date: Oct 2014
Location: Tennessee
Posts: 41
10 yr Member
Default

Quote:
Originally Posted by Electron View Post
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.
H1N1Guy is offline   Reply With QuoteReply With Quote
Old 10-21-2014, 10:31 AM #19
Electron's Avatar
Electron Electron is offline
Member
 
Join Date: May 2010
Location: Oklahoma USA
Posts: 263
10 yr Member
Electron Electron is offline
Member
Electron's Avatar
 
Join Date: May 2010
Location: Oklahoma USA
Posts: 263
10 yr Member
Default

Quote:
Originally Posted by H1N1Guy View Post
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
Electron is offline   Reply With QuoteReply With Quote
Old 10-21-2014, 05:46 PM #20
H1N1Guy H1N1Guy is offline
Junior Member
 
Join Date: Oct 2014
Location: Tennessee
Posts: 41
10 yr Member
H1N1Guy H1N1Guy is offline
Junior Member
 
Join Date: Oct 2014
Location: Tennessee
Posts: 41
10 yr Member
Default

Quote:
Originally Posted by Electron View Post
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.
H1N1Guy is offline   Reply With QuoteReply With Quote
Reply


Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
Idiopathic small fiber neuropathy SFNgirl Peripheral Neuropathy 46 05-01-2019 07:43 AM
idiopathic small fiber peripheral neuropathy cbar New Member Introductions 12 01-06-2013 05:57 PM
I have been Dx with idiopathic small sensory nerve fiber neuropathy and nothing helps Hurtin' Nerves Peripheral Neuropathy 15 04-02-2010 07:03 PM
Small Fiber (Diabetic) Peripheral Neuropathy? tjsmith890 General Health Conditions & Rare Disorders 2 04-22-2008 05:27 PM


All times are GMT -5. The time now is 05:51 PM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is 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.