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-   -   Strengthening the immune system can make things worse? (https://www.neurotalk.org/peripheral-neuropathy/220283-strengthening-immune-system-worse.html)

Tunaboy 05-14-2015 07:25 PM

Strengthening the immune system can make things worse?
 
It seems that most PN is autoimmune, so wouldn't doing things to boost the immune system make things worse? Like taking lots of vitamin C and other supplements. Most of the treatments for PN are immunosuppressants such as corticosteroids. I recently added green tea extract to my daily regimen and my symptoms flared, not sure if it was just a coincidence.

en bloc 05-14-2015 08:50 PM

Most PN is not autoimmune. There are MANY different causes of PN and autoimmune does seem to have a good size piece of the pie but it's still far behind conditions like diabetes, B12 deficiency, trauma, alcoholism, medications, etc.

That being said, you are quite correct in saying that boosting your immune system when you have an autoimmune condition can make things worse. AI diseases are, in fact, typically treated with immune suppressors for that very reason. When you boost the immune system, you risk increasing the autoimmune activity.

mrsD 05-15-2015 07:49 AM

Vitamin C is a complex and essential nutrient. Humans are the only mammal who cannot synthesize their own Vit C.

So we are dependent on supplements and foods for it.

The best source of information on Vit C is the Linus Pauling Institute ( which is great for all supplements).

http://lpi.oregonstate.edu/mic/vitamins/vitamin-C

Vitamin C is an antioxidant and helpful for inflammation, so with some PNs it is very useful. The severe neuropathy RSD (CRPS) responds to high dose Vit C for example.

Some PNs are caused by toxins, drugs, Diabetes, hypothyroidism, and many other lifestyle issues. Autoimmune factors are more common in women than men, and often are triggered by illnesses, and vaccines. Viruses and bacteria have protein sequences on their cell membranes which may mimic some human tissues. So when you get a Strep throat infection, you may have genetic issues and overproduce antibodies to this strep sequence, and then those excess antibodies may go to the brain and cause a movement disorder called Tourette's (Tics).... the is called PANDAs.
This is PANDAs in more detail:
http://en.wikipedia.org/wiki/PANDAS

This type of process is not going to be "caused" by Vit C. It is because people have a set of genes making it more likely. Vit C in fact helps prevent infections, and therefore would prevent some autoimmune reactions that way.

Some doctors believe that full body PN may be a result of a viral infection (or bacterial one), triggering too many auto-antibodies to that organism. This is why we see vaccine reactions... which is an overproduction response to a infectious agent.

Tunaboy 05-15-2015 09:19 AM

Quote:

Originally Posted by mrsD (Post 1142484)
Vitamin C is a complex and essential nutrient. Humans are the only mammal who cannot synthesize their own Vit C.

So we are dependent on supplements and foods for it.

The best source of information on Vit C is the Linus Pauling Institute ( which is great for all supplements).

http://lpi.oregonstate.edu/mic/vitamins/vitamin-C

Vitamin C is an antioxidant and helpful for inflammation, so with some PNs it is very useful. The severe neuropathy RSD (CRPS) responds to high dose Vit C for example.

Some PNs are caused by toxins, drugs, Diabetes, hypothyroidism, and many other lifestyle issues. Autoimmune factors are more common in women than men, and often are triggered by illnesses, and vaccines. Viruses and bacteria have protein sequences on their cell membranes which may mimic some human tissues. So when you get a Strep throat infection, you may have genetic issues and overproduce antibodies to this strep sequence, and then those excess antibodies may go to the brain and cause a movement disorder called Tourette's (Tics).... the is called PANDAs.
This is PANDAs in more detail:
http://en.wikipedia.org/wiki/PANDAS

This type of process is not going to be "caused" by Vit C. It is because people have a set of genes making it more likely. Vit C in fact helps prevent infections, and therefore would prevent some autoimmune reactions that way.

Some doctors believe that full body PN may be a result of a viral infection (or bacterial one), triggering too many auto-antibodies to that organism. This is why we see vaccine reactions... which is an overproduction response to a infectious agent.

If the body produced too many antibodies, wouldn't it kill the virus quicker and thus the PN would eventually resolve?

en bloc 05-15-2015 09:21 AM

EXACTLY what MrsD stated!

My comment on 'boosting' the immune system was meant in terms of medications and supplements geared at solely increasing immune function/production...not directed at Vitamin C use, which as MrsD said, is an essential nutrient.

mrsD 05-15-2015 09:57 AM

Quote:

Originally Posted by Tunaboy (Post 1142514)
If the body produced too many antibodies, wouldn't it kill the virus quicker and thus the PN would eventually resolve?

I think you are missing the point. The antibodies LEFT over after the infection, is what is thought to be a form of autoimmune induction. Quickly or slowly getting rid of the virus is immaterial.

You know, some people have a talent for understanding biological systems...it is like a language or like music. If you don't have the education for it or the talent and desire to learn it, you will not quite understand it all. Just like I don't understand football! ;)

Autoimmune disease is pretty complex....
example:
http://en.wikipedia.org/wiki/Autoimmune_disease

en bloc 05-15-2015 12:29 PM

Keep in mind, the immune system is forever cycling, as the antibodies only live for about 21 days. Once that autoimmune cycle begins, it continues. So PN from autoimmune factors don't stop after the trigger (illness, infection, virus, trauma, etc) of the process is gone.

ellsac 05-15-2015 12:35 PM

I echo what Mrs. D said. I have some autoimmune conditions already, and a history of bad Lyme Disease (confirmed by blood tests and the whole nine yards as a child).

My doctors believe, although it can't be proven, that my autoimmune diseases are due to my body's immune system going a bit bonkers from the Lyme Disease. I was sick with Lyme for almost a year before diagnosis, and it got all over the place in my body. My immune system was obviously trying hard to kill it off, but was unsuccessful.

The Lyme cleared up with antibiotics-high doses-on and off for 6 months. couple decades later, I got whacked by my first autoimmune disease, which had probably been brewing for some time, and just waiting for the right stressful situation to pounce.

Now, 5 years later, I have idiopathic small fiber neuropathy. ALL my labs are perfect-including the known autoimmune causes. My neuro thinks mine probably is some sort of overly diligent immune system issue I have going on, combined with a less than stellar endocrine and hormonal profile (due to my autoimmune diseases), but that the autoantibodies are simply ones we don't know about yet and have no way to find.

Either way, my options are possibly trials of plaquenil (considering it), extra steroids (already take them in really low doses since my body makes no cortisol), or diet and supps.

For now, it is just diet and supplements. The supplements do seem to help. Maybe in the future I'll consider something else if my symptoms become too much for me to handle on my own.

Also, there's a big difference between taking supplements that are necessary for immune health, and taking ones that are for boosting the immune system. Big difference between "support" and "boost"...although it can get somewhat confusing if you're not reading carefully what nutrients are for what body processes and so forth.

Tunaboy 05-15-2015 08:23 PM

Quote:

Originally Posted by ellsac (Post 1142552)
I echo what Mrs. D said. I have some autoimmune conditions already, and a history of bad Lyme Disease (confirmed by blood tests and the whole nine yards as a child).

My doctors believe, although it can't be proven, that my autoimmune diseases are due to my body's immune system going a bit bonkers from the Lyme Disease. I was sick with Lyme for almost a year before diagnosis, and it got all over the place in my body. My immune system was obviously trying hard to kill it off, but was unsuccessful.

The Lyme cleared up with antibiotics-high doses-on and off for 6 months. couple decades later, I got whacked by my first autoimmune disease, which had probably been brewing for some time, and just waiting for the right stressful situation to pounce.

Now, 5 years later, I have idiopathic small fiber neuropathy. ALL my labs are perfect-including the known autoimmune causes. My neuro thinks mine probably is some sort of overly diligent immune system issue I have going on, combined with a less than stellar endocrine and hormonal profile (due to my autoimmune diseases), but that the autoantibodies are simply ones we don't know about yet and have no way to find.

Either way, my options are possibly trials of plaquenil (considering it), extra steroids (already take them in really low doses since my body makes no cortisol), or diet and supps.

For now, it is just diet and supplements. The supplements do seem to help. Maybe in the future I'll consider something else if my symptoms become too much for me to handle on my own.

Also, there's a big difference between taking supplements that are necessary for immune health, and taking ones that are for boosting the immune system. Big difference between "support" and "boost"...although it can get somewhat confusing if you're not reading carefully what nutrients are for what body processes and so forth.

Do you think your SFN is a result from Lyme that is possibly still active? I recently got tested through igenex. Just waiting on results.

kiwi33 05-15-2015 11:18 PM

With my immunologist hat on, I agree with what mrsD has contributed to this discussion.

One other comment:

Quote:

Originally Posted by Tunaboy (Post 1142514)
If the body produced too many antibodies, wouldn't it kill the virus quicker and thus the PN would eventually resolve?

This is complicated. Antibodies, which are made by plasma cells (derived from B cells), can bind to viruses, stopping them from infecting cells and helping in their disposal. However, once a cell has become infected with a virus antibodies can not help. Other immune system cells (cytotoxic T cells) then take over - they kill the infected cell, stopping the virus from replicating inside it.

ellsac 05-16-2015 08:28 AM

Quote:

Originally Posted by Tunaboy (Post 1142636)
Do you think your SFN is a result from Lyme that is possibly still active? I recently got tested through igenex. Just waiting on results.

Eh...I don't really know. That's the honest answer. If it is Lyme, that means I have had it active in some way for 25 years now, and it is possible i will always have it, even if i try and treat it with antibiotics (and for that length of infection...we'd be talking a looooong time on dangerous antibiotics, often combos of them). I have been in several long term rounds of antibiotics since for various ailments as a last ditch effort by doctors (none of the neuro toxic antibiotics though...just doxycline and biaxin)...I was on them for a few months back in September to see if they helped the PN. I found no change.

I am also not certain that long term antibiotics would even be the right way to go for me or chronic Lyme in general. I have a lot going on...autoimmune disease, history of Lyme, PN with unknown cause...for me, it seems if I treat one of those, I could make the other worse. So I am going conservative for now, and focusing on diet, exercise, and supplements. Really, I am taking each day as it comes. I have a really good team of doctors, so I know on top of my own research, we're pretty on top of things. My routine labs are good, which means even with this attack on my nerves, my organs are functioning well. I know that seems weird, but with my history, i breathe a sigh of relief everytime i get back a nice round of bloods with nothing abnormal (usually a CBC, CMP, lipid panel, CRP, ESR, adrenal hormone markers, TSH, T4, and some other stuff usually diabetic related). Unfortunately, science just doesn't know everything yet, so we can only know what current research states... And even some current research clashes. Also, every body is different, which adds even more factors.

Tunaboy 05-16-2015 11:27 AM

Quote:

Originally Posted by ellsac (Post 1142702)
Eh...I don't really know. That's the honest answer. If it is Lyme, that means I have had it active in some way for 25 years now, and it is possible i will always have it, even if i try and treat it with antibiotics (and for that length of infection...we'd be talking a looooong time on dangerous antibiotics, often combos of them). I have been in several long term rounds of antibiotics since for various ailments as a last ditch effort by doctors (none of the neuro toxic antibiotics though...just doxycline and biaxin)...I was on them for a few months back in September to see if they helped the PN. I found no change.

I am also not certain that long term antibiotics would even be the right way to go for me or chronic Lyme in general. I have a lot going on...autoimmune disease, history of Lyme, PN with unknown cause...for me, it seems if I treat one of those, I could make the other worse. So I am going conservative for now, and focusing on diet, exercise, and supplements. Really, I am taking each day as it comes. I have a really good team of doctors, so I know on top of my own research, we're pretty on top of things. My routine labs are good, which means even with this attack on my nerves, my organs are functioning well. I know that seems weird, but with my history, i breathe a sigh of relief everytime i get back a nice round of bloods with nothing abnormal (usually a CBC, CMP, lipid panel, CRP, ESR, adrenal hormone markers, TSH, T4, and some other stuff usually diabetic related). Unfortunately, science just doesn't know everything yet, so we can only know what current research states... And even some current research clashes. Also, every body is different, which adds even more factors.

I'm also doing the healthy diet and supplements. I'm not sure if exercise aggravates my symptoms, but I do feel better afterwards. BUT, I did notice an electric zap a couple times and they both occurred on the days I exercised. I think it's because lifting weights stimulates the CNS. Are you currently on any pain meds? I want to hold off for as long as possible.

ellsac 05-18-2015 08:34 AM

Quote:

Originally Posted by Tunaboy (Post 1142732)
I'm also doing the healthy diet and supplements. I'm not sure if exercise aggravates my symptoms, but I do feel better afterwards. BUT, I did notice an electric zap a couple times and they both occurred on the days I exercised. I think it's because lifting weights stimulates the CNS. Are you currently on any pain meds? I want to hold off for as long as possible.

I'm not on any meds...I plan to hold off on that for a long as I can, because I am only 35, and my husband and I still hope to have a baby.

Exercise makes some of my symptoms worse, and others better-but the way I understand it, is the exercise certainly isn't hurting the neuropathy so much as its just irritating the nerves. By that I mean it isn't doing damage to the nerves. I'll get those electric shock feelings when exercising also-kind of like a shooting pain.

mrsD 05-18-2015 08:45 AM

Keep in mind your nerves exist to tell you something.

If what you are doing, is setting them off ( certain foods eaten, physical activities, stretching them, lifting heavy objects, getting lots of vaccines, various infections, drugs taken, etc) you need to pay attention and moderate or eliminate the trigger(s).

Keeping a journal of day to day events may be very helpful in revealing a trigger.

Electron 05-18-2015 08:55 AM

You want your immune system working properly, not to be suppressed. The immune system is what kills the cancer cells, that we all have in our bodies, before they have a chance to take hold. The question you and your doctor should be asking is "why is my immune system attacking my body?" Your body is adapting to some "poor" condition in the best way it knows know. But asking this question is much more difficult than prescribing a drug, so it isn't often done. Suppressing it is like sweeping dust under the rug.

I invite you to look at John Bergman's videos about the immune system, on youtube. He knows more about the human body than anyone else I have heard. One reason for autoimmune conditions is leaky gut, causing excess proteins to leak into the blood. Another is excess gluten, found in much higher concentrations in modern wheat than what our ancestors would have been exposed to.

The bottom line, eat whole unprocessed plant foods.
Ron

ellsac 05-18-2015 09:05 AM

Quote:

Originally Posted by mrsD (Post 1142963)
Keep in mind your nerves exist to tell you something.

If what you are doing, is setting them off ( certain foods eaten, physical activities, stretching them, lifting heavy objects, getting lots of vaccines, various infections, drugs taken, etc) you need to pay attention and moderate or eliminate the trigger(s).

Keeping a journal of day to day events may be very helpful in revealing a trigger.

My neuro said exercise is important, and I can expect an uptick in symptoms, but that it would level out-and if I go really slow, I could keep the uptick to a bare minimum. So my plan is to get a fitbit, and slowly each week add more walking steps. The weight training stuff really does irritate my nerves-so I am going very slowly with that as well. Very light weights, and often only my own body weight. Taking it back a notch definitely helped.

I really do need to be better about my journal, though. I know its important. I've figured out a couple of triggers, but I know I'd probably know more of them if I was tracking better.

Electron 05-18-2015 09:31 AM

Why Do Plant-Based Diets Help Rheumatoid Arthritis?
 
This is related, very interesting. Rheumatoid arthritis is an autoimmune disease that responds dramatically to a plant diet.
Why Do Plant-Based Diets Help Rheumatoid Arthritis?
http://nutritionfacts.org/video/why-...toid-arthritis
May 13th 2015 · Michael Greger, M.D.

Tunaboy 05-18-2015 08:45 PM

Quote:

Originally Posted by ellsac (Post 1142959)
I'm not on any meds...I plan to hold off on that for a long as I can, because I am only 35, and my husband and I still hope to have a baby.

Exercise makes some of my symptoms worse, and others better-but the way I understand it, is the exercise certainly isn't hurting the neuropathy so much as its just irritating the nerves. By that I mean it isn't doing damage to the nerves. I'll get those electric shock feelings when exercising also-kind of like a shooting pain.

Yeah me too. I have always been weary of meds, even otc pain killers. Some of these stories floating around about side effects and withdrawals are downright scary. I feel so much better after exercise. My feet might hurt a little, but overall I feel better. I'm gonna start ramping up the weights soon.


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