30 years of this. Pretty tired

[everywhereigo]

So, yeah, as I've gotten older, ob's haven't be as frequent, but the last few months have been like when I first got this. I mean 4-5 outbreaks in 3 months is pretty shitty.

Hello, 2016? Still no cure. What's up with that? So I'm feeling a little depressed and in pain, and just plain miserable. I'm sure I'll be fine in a few days. Just venting. Thank you.

[EM424]

I'm new to this and I feel your pain. 

[JBnATL]

10 hours ago, everywhereigo said:

So, yeah, as I've gotten older, ob's haven't be as frequent, but the last few months have been like when I first got this. I mean 4-5 outbreaks in 3 months is pretty shitty.

Hello, 2016? Still no cure. What's up with that? So I'm feeling a little depressed and in pain, and just plain miserable. I'm sure I'll be fine in a few days. Just venting. Thank you.

Hi there, I am sorry to hear you are still having problems after all these years.  Has there been any change in your life that could have caused this?  Are you under any additional stress?  Have you changed your diet?

I hope you can identify the cause and correct it.  

Good luck!

JB

[everywhereigo]

Thank you fellow supporters. The thing I'm looking at is the Collagen supplement I've been taking for arthritis. Best thing I've ever tried, but I see on the label that it is high in arginine.  So I'm going to try cutting back on the dosage and being more consistent with the lysine. Maybe it will help to counteract  the arginine's effects.

I haven't had successive outbreaks like this in years. It really is quite painful so I understand the distress recently infected people feel. Gloomy, and bummed.

[SureWhyNot]

 L-Lysine also supports collagen production so that is a win win situation.

I just did a search and this came up you may find interesting as I have no idea what Arthritis you are dealing with. http://mmscr.timeclever.com/a-to-z/arthiritis/l-lysine-for-rheumatoid-arthritis/  This is a lovely surprise and I hope useful information to you and others.

 

[SheIsBlue]

I am 30 years in too.  I get it.  You are not alone.

[everywhereigo]

Hey, thanks for the great suggestions. I've been supplementing Lysine to offset the effects of the arginine in the collagen I've been taking. So far so good. 

SUREWHYNOT, I just finished reading the article you posted. It's VERY interesting.  I might stop the collagen just to see how effective the lysine is on my arthritis. We'll see what happens.

Big hugs to all of you!

[Qwerty01]

31 years for me and even though the outbreaks are less. I wonder what my life would have been like if i had never got this. I understand how you feel.

[Seeker1960]

I'm new to this also. Since January it started with a little itch then a mild burning, then a chaffing feeling the then Nueropathy started in late March with the butt burning and back of my thighs and the assault on my immune system has been unrelenting.  I have been on Valtrex for 2 weeks. Doesn't seem to be doing anything but I'm not 100% sure. It might be doing somlething.

I have gotten other vague and random symptoms like twitching in legs and so on. I also i am experiencing fatigue and weight loss. I loss 20 lbs and my muscle tone is also affected. I know they say this is not a fatal condition but I feel this is killing me slowly. 

Edited May 23, 2016 by Seeker1960

[LillianPanos]

1960 u exercising? Exercise makes me feel better.  Yesterday I was dizzy etc from the meds u ran anyways. . . Felt better when I was done feel great today holding onto that feeling

[Seeker1960]

I need to do something. I have loss weigh and muscle tone in my legs. I feel tired most of the time. I have read that HSV can cause Chronic Fatigue Syndrome. So I am worried that this might be happening to me. I have good days and bad. HSV is Neurotropic meaning it loves to infect all kinds of nerves not only the Sacral Ganglion. I have felt affects of this infection all over. I don't know when or if my body will get a hold of this. My immune system is somewhat suppressed so it may not be strong enough to slow the virus from hitting all parts of my CNS.

I wish I only had out breaks and not all the nerve stuff. It puts a damper on my life. I don't have energy to do what I want to or the things that I enjoy. Really sucks

[WilsoInAus]

1 hour ago, Seeker1960 said:

I need to do something. I have loss weigh and muscle tone in my legs. I feel tired most of the time. I have read that HSV can cause Chronic Fatigue Syndrome. So I am worried that this might be happening to me. I have good days and bad. HSV is Neurotropic meaning it loves to infect all kinds of nerves not only the Sacral Ganglion. I have felt affects of this infection all over. I don't know when or if my body will get a hold of this. My immune system is somewhat suppressed so it may not be strong enough to slow the virus from hitting all parts of my CNS.

I wish I only had out breaks and not all the nerve stuff. It puts a damper on my life. I don't have energy to do what I want to or the things that I enjoy. Really sucks

This is not correct. Each nerve ganglion is in a protective casing as is the central nervous system. Transfer of HSV between any of these encased zones is incredibly difficult and happens only very rarely (about 1 in 500,000 years).

There is no established link between HSV-1 and Chronic Fatigue Syndrome.

It has not even been established that you have HSV seeker.

Please calm down and seek medical advice on your ailments, they seem quite severe and may be actually something you can treat.

[Seeker1960]

57 minutes ago, WilsoInAus said:

This is not correct. Each nerve ganglion is in a protective casing as is the central nervous system. Transfer of HSV between any of these encased zones is incredibly difficult and happens only very rarely (about 1 in 500,000 years).

There is no established link between HSV-1 and Chronic Fatigue Syndrome.

It has not even been established that you have HSV seeker.

Please calm down and seek medical advice on your ailments, they seem quite severe and may be actually something you can treat.

https://www.princeton.edu/main/news/archive/S33/79/51K4

http://www.healthrising.org/blog/2014/02/19/herpes-simplex-devil-details-fibromyalgia-chronic-fatigue-syndrome-inquiry/3/

My rebuttal

 

[Seeker1960]

One more link

http://simmaronresearch.com/2014/11/drug-combo-pridgen-antiviral-fibromyalgia-trial-identified-results-available/

[Taila]

On 2/14/2016 at 4:57 AM, everywhereigo said:

So, yeah, as I've gotten older, ob's haven't be as frequent, but the last few months have been like when I first got this. I mean 4-5 outbreaks in 3 months is pretty shitty.

Hello, 2016? Still no cure. What's up with that? So I'm feeling a little depressed and in pain, and just plain miserable. I'm sure I'll be fine in a few days. Just venting. Thank you.

Something that works wonders for me is taking oregano oil and coconut oil in capsule form. I used to get frequent ob's. After using the oregano, I can say I haven't been seeing a lot. Right now, I'm pretty much outbreak free. Just one or two here and there but that is better than the crazy amount that I used to get. 

[Taila]

2 hours ago, Seeker1960 said:

I need to do something. I have loss weigh and muscle tone in my legs. I feel tired most of the time. I have read that HSV can cause Chronic Fatigue Syndrome. So I am worried that this might be happening to me. I have good days and bad. HSV is Neurotropic meaning it loves to infect all kinds of nerves not only the Sacral Ganglion. I have felt affects of this infection all over. I don't know when or if my body will get a hold of this. My immune system is somewhat suppressed so it may not be strong enough to slow the virus from hitting all parts of my CNS.

I wish I only had out breaks and not all the nerve stuff. It puts a damper on my life. I don't have energy to do what I want to or the things that I enjoy. Really sucks

consider immune boosters and doing yoga. Once you tackle it like this, you should be okay for the most part. I have sciatica but since taking coconut oil and oregano oil in the capsule form, it has really been smooth sailing for me for the most part. works a lot better than all the big pharma crap. 

[Seeker1960]

21 minutes ago, Taila said:

consider immune boosters and doing yoga. Once you tackle it like this, you should be okay for the most part. I have sciatica but since taking coconut oil and oregano oil in the capsule form, it has really been smooth sailing for me for the most part. works a lot better than all the big pharma crap. 

What are immune boosters?

 

[WilsoInAus]

37 minutes ago, Seeker1960 said:

https://www.princeton.edu/main/news/archive/S33/79/51K4

http://www.healthrising.org/blog/2014/02/19/herpes-simplex-devil-details-fibromyalgia-chronic-fatigue-syndrome-inquiry/3/

My rebuttal

 

They are not research, they are just web stories promoting a product with inappropriate scaremongering tactics. Read carefully what they say as they are trying not to cross the line! No where do they actually suggest the the virus can spread outside the ganglia or causes CFS.

[Taila]

16 minutes ago, Seeker1960 said:

What are immune boosters?

 

Immune boosters would be anything like certain teas, vitamin c , different vitamins,  apple cider vinegar, 

[Seeker1960]

3 hours ago, WilsoInAus said:

They are not research, they are just web stories promoting a product with inappropriate scaremongering tactics. Read carefully what they say as they are trying not to cross the line! No where do they actually suggest the the virus can spread outside the ganglia or causes CFS.

Princeton University selling a product? You're kidding right?

[WilsoInAus]

Nup 

The article doesn't support what you have said.

[Whoreallyknows]

On 5/23/2016 at 7:48 PM, Taila said:

Something that works wonders for me is taking oregano oil and coconut oil in capsule form. I used to get frequent ob's. After using the oregano, I can say I haven't been seeing a lot. Right now, I'm pretty much outbreak free. Just one or two here and there but that is better than the crazy amount that I used to get. 

Taila, how are you doing now? I was diagnosed on July 19th and just a few days ago started on oregano oil and monolaurin (coconut derivative) both in capsule form and am hoping it helps. I am also on daily suppressives and think I am going to take l-lysine as well.