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Old 04-05-2011, 12:07 PM #1
Nervous Nervous is offline
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Default Time For Me to Get A NeuroTalk Update

I joined NeuroTalk last summer, after I was diagnosed with Small Fiber Neuropathy. Following the many good recommendations of the forum, I started taking supplements. Now, I'd like to review what I'm taking, report on changes, and open the floor for comments.

This is what I am currently taking:

A multiple vitamin
R-Lipoic Acid 100 mg
Q-Absorb (Co-Q10) 300 mg
Magnesium Optomizer: Magnesium 200 mg, Potassium 100 mg, Taurine 600 mg
Ecotrin (asperin) 81 mg
Vitamin D3 4000 IU
Schiff MegaRed (Krill oil) 900 mg
Benfotiamine 150 mg
L-Lysine 1000 mg
Acetyl L-Carnitine 1000 mg
L-Arginine 1000 mg
L-Ornithine 500 mg
Methylcobalamin 5000 mcg
D-Ribose 5 g to 40 g per day


Throughout the Fall 2010, I experienced improvement. For example, 95% of my terrible night foot cramps went away. My skin burning sensation also decreased. Around December, I decided to delete the L-Lysine and see if I could get by without it. Burning sensation flared up again, so I went back to L-Lysine, but I have not been able to return to the low level of symptoms that I previously had.

mrsD often advises to consider diet, food, behavior, and other things that might act as "triggers." With regard to my diet, I have been off wheat, yeast, sugar, legumes, garlic, onion since 1998. I do not notice that I have problems with nightshades, specifically potatoes and tomatoes. They seem to be okay for me. I try to exercise — mostly walking — as much as my chronic fatigue will allow. My biggest trigger seems to be stress, especially having to do with money and finances. Generally, I have the sense that my symptoms are getting worse because the burning is spreading to new parts of my body.

So.

Because it's possible that I am taking too much or too little of the above supplements, or that I am missing something altogether, I would appreciate your response and comment.

Thanks in advance!
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Old 04-05-2011, 12:14 PM #2
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I am suspecting you have a viral problem.

Try stopping the arginine/citrulline all together, and restarting the lysine. If this helps, that will clinch it me for at least.
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Old 04-05-2011, 12:33 PM #3
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Will do!

I gather that you mean Arginine/Ornithine (which comes in one tablet), not Arginine/Citrulline. I only stated taking these recently, but, as you say, we'll see if deleting them makes a change.

Thanks again!
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Old 04-05-2011, 03:05 PM #4
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Quote:
Originally Posted by mrsD View Post
I am suspecting you have a viral problem.

Try stopping the arginine/citrulline all together, and restarting the lysine. If this helps, that will clinch it me for at least.
PMI, What would a supplement have to do with a virus?
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Old 04-05-2011, 03:13 PM #5
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Certain viruses (esp of the Herpes family of which there are many) use Arginine to replicate.

Many many people are infected with Herpes... up to 95% with simplex alone. Then there are the Zoster people...those who had chicken pox when younger (me for example).

When someone consumes high arginine containing foods, or supplements, this can activate the virus which lives in nerves.
Then symptoms occur. Infection with Herpes viruses are for LIFE. They live in the dorsal ganglia of the spinal cord.

That is why I don't put up arginine data more often ...it is a common recommendation now for hypertension, as well as erectile dysfunctions. I am suspect of high arginine without balancing the lysine. Lysine quiets viral replication when ratios become unbalanced.
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Old 04-06-2011, 11:41 AM #6
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Quote:
Originally Posted by mrsD View Post
Certain viruses (esp of the Herpes family of which there are many) use Arginine to replicate.

Many many people are infected with Herpes... up to 95% with simplex alone. Then there are the Zoster people...those who had chicken pox when younger (me for example).

When someone consumes high arginine containing foods, or supplements, this can activate the virus which lives in nerves.
Then symptoms occur. Infection with Herpes viruses are for LIFE. They live in the dorsal ganglia of the spinal cord.

That is why I don't put up arginine data more often ...it is a common recommendation now for hypertension, as well as erectile dysfunctions. I am suspect of high arginine without balancing the lysine. Lysine quiets viral replication when ratios become unbalanced.

Will agree on the Arginine causing problems. I take only Lysine 1000mg 2x per day and that keeps things right. I have come to the conclusion that at least in my case either the virus or toxin(along with the Prevacid and other pharmaceuticals I was prescribed)or combination of both weakened and damaged my endocrine system and especially my adrenal function. Taking things like glandular supplements and herbs like Ashwaghanda that boost adrenals and things like colostrum and herbs Ecklonia Cava that boost growth hormone will usually squash symptoms. In addition I have starting suppementing with extra zinc, manganese, copper and have found an extra boost from that. In my mind, anything that suppresses adrenal function as well as your gender specific optimum hormone levels(testosterone, DHT and estrogen) is highly detrimental to neuropathy. According to a natural doctor I saw in the past, most tests at conventional doctors don't test right for thyroid or adrenal function and really fuzz on hormones in general.
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Old 04-07-2011, 06:44 PM #7
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Mrs D,

this is very interesting. i have had HSV-2 since 1979, initially the burning pain i got was similar to what i used to experience before getting an outbreak of herpes. since developing PN i have had very few outbreaks of herpes. this could simply be because i am generally healthier. i asked the Neuros about HSV-2 being a part of the problem and they said no. i couldn't find much on the net about it either. do you have any more info?
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Old 04-07-2011, 06:58 PM #8
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I believe the Herpes family lives in the dorsal root ganglia.

We had a paper posted here about that once. I'll try and find it for you.

Postherpetic neuralgia arises from H. Zoster infection. It is a very well known entity.

There are many things most doctors are unaware of, since they don't look for updated research. (unless forced to for continuing education relicensure).

Some papers I found just now quickly:

http://www.ncbi.nlm.nih.gov/pubmed/1665505

http://www.ncbi.nlm.nih.gov/pubmed/2833203

http://jvi.asm.org/cgi/content/short/85/6/3030

Search Herpes virus dorsal root ganglia... for more.

The paper I recall said that some people were more prone genetically for this type of nerve damage with pain. Not all people with HV develop the dorsal root problem, therefore. The article was about stem cell treatment to repair the genetic deficiency so symptoms would abate.
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Old 04-08-2011, 08:43 AM #9
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Here is the article:

http://www.sciencedaily.com/releases...0615171509.htm

It is about gene therapy for the dorsal root ganglia...but it has not generalized to humans yet.
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Old 04-23-2011, 10:39 AM #10
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Quote:
Originally Posted by mrsD View Post
I am suspecting you have a viral problem.

Try stopping the arginine/citrulline all together, and restarting the lysine. If this helps, that will clinch it me for at least.
I cannot say that there has been much change since I stopped the l-arginine.



On another note, what amounts of choline (sometimes marketed as citicoline) should I be taking? My multi-vitamin is only giving me 35 mg of Choline (bitartrate).
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