LDN Treatment

[chikitta13]

@2Legit2Quit I was wondering if you could occasionally update on your experience with LDN. I'm curious about how it works out for you.

[2Legit2Quit]

I have been on it for a week and 2 n half weeks now and started only at .5mlg, which from what they say, you don't truly see improvement it doing anything until 1.5mlgs and I'm going up .5lmg every two weeks. My doc has never prescribed it, so he's being overly cautious. I have been off valtrex for a month now. I've had a couple mild obs, but less than what I had on valtrex. Mainly just bumps on my buttock. It's not long enough on it yet, to really give you a good answer, but I will keep you up to date I. How it goes. I am hopeful, as I read a study of it being used to treat heroestxister and there was huge improvement in it. Optimal dose is 4?5mlgs, so I got a long way to go until I get there, because if the way he's prescribing it, which pisses me off. I think he just wants me to come in for the money, because this drug is nontoxic and has no bad side effects, other than it can cause insomnia, which has been an issue for me. I was up till 4 last night.

[whitedaisies]

Wish I could get on it. I can't even convince anyone I have h and I have non stop sympyoms and bumps. I am so tired of it all.

 

Good luck and keep us posted.

[2Legit2Quit]

Well if they diagnose you w fibromyalgia, this is used to treat it as well and you could request it then. If you go o a DO or a wellness center that doesn't take insurance, they will prescribe it and it's a cheap drug; which is a good things, because insurance doesn't cover it. It like 45 dollars for a month's supply.

[whitedaisies]

Went to rhumatologist. Says doesn't think fibromayalgia. Don't know why.

 

Testing for thyroid issues and bone marrow disorders.

 

I have abnormally high inflammation which I think is from chronic hwrpes outbreaks. Do you have high inflammation levels?

 

I have weekly ob that never have lesions. Oh tiny bumps like so small. Nerve pain is horrific before it comes. They itch before break thru skin. Don't hurt and can't feel them til they are gone. They show up everywhere as I think I have it disseminated. I don't know why. Must have some underlying condition.

 

It's been two years. Depression worse. Synptoms haven't changed and have no diagnosis.

[whitedaisies]

I am suicidal again. Fuck

[2Legit2Quit]

Yeah, but I don't think that can be from herpes, but I could be wrong. . High inflammation is usually a sign of autoimmune issues. Mine was high as well.

 

So your rheumatologist didn't just put you in for a full panel all at once? Did she say anything else about what could be going on? Did she say anything about the herpes?

[whitedaisies]

No one ever thinks it's herpes and honestly I have no swab proof and no negative to positive blood test. So I am stuck unless I can get some positive swabs which is high unlikely after this long

 

I don't know what she tested for besides what I told you. They are trying to figure out what is causing high inflammation. I think its chronic h infection.

[2Legit2Quit]

So do you come up positive in blood for HSV 1 at least?

[2Legit2Quit]

Yeah I just checked and HSV is not something that would cause high Inflammation ... If that were the case, just have everyone would have elevated inflammrin their blood tests. Not working out, smoking, unhealthy life style, autoimmune, heart disease, inflammation in arteries, etc causes that.

 

Did you ask her if HSV can cause the high Inflammation?

[whitedaisies]

Repeated infection can cause high inflammation. I think I saw this on mayo clinic website

 

I would think if ones body reacts well to virus then inflammation will be low and may only appear during an ob

 

But if there is chronic and repetitive ob it can cause elevated inflammation levels

[whitedaisies]

If one has repeated ob it can cause it. Didn't ask her

 

She is checking for thyroid and bone marrow issues which she doubts

 

No to lupus and no to behcets no to ms

[whitedaisies]

Yes come positive hsv1 blood which so does 80 percent of population

 

I don't even know what to disclose? What do I say? I think I have ghsv1 but can't prove it? I have oral hsv1? I have hsv1 don't know where? I am in a circle with it all the time. And honestly if I had this shot happen and it go away with no positive swabs I wouldn't feel so bad about it. I just feel like I am lying if I don't say I have ghsv1 but then if I say I have it I don't know that either. I don't know how I get to the root of that. And saying u may have it u might as well say u have it.

 

Anyway I wouldn't be so worried about disclosure but I so miss the intimacy of sex. The acrobatics of it are fun too but it is the intimacy I crave.

 

I dunno. I just don't seem to be able to win at anything. It's just here's the worst case scenario and then the second worst case scenario and then pick one lol

 

I know ur health struggles are hard but at least U have a diagnosis and u are working to see what things work for u. I have no idea what's going on and I think it's chronic h but no proof. Wtf do I do with that?

[ughhhh]

@Whitedaisies.

Have you looked and lichen sclerosis or Lichen Planus...?

Have you had a biopsy done?

A biopsy can detect herpetic infection as well as the above conditions

 

[whitedaisies]

No biopsy done. I can't get to a derm when these damn things show up and honestly they look harmless.

 

I just Swab for h...witht no typical kesions they come negative. I awab internally too and negative

 

I am wondering if I am having repeated shingles ob w minor rash. These last few days I have had the pin prick feeling all over my body then terrible burning nerves then pain so bad clothes hurt on my skin

 

With no external kesions that are pus filled. What am I supposed to do. I get kesions just red bumps. I just feel trapped.

 

This rhumatologist seems she is trying to get to the bottom of it. But in the end getting a same day appointment when this stuff comes up is impossible.

 

I kind of disclosed to this guy I am seeing. Not ready for sex at all as now I am petrified of it on a physical level and emotional level based on some horrible past experiences. Didn't get the best reaction but not a negative one either. I just said I don't know what I have and he didn't believe hsv1 could be in the genitals.

 

But he's been very supportive with my health and emotional health and I keep trying to push him away and he's not going anywhere. I think it's bc he thinks I don't have ghsv1. I told him positive blood for hsv1. I don't know what to do about it? About anything?

 

Health deteriorated, mental health deteriorated, finances deteriorated. I did everythig right for 40 years and one minor virus or whatever it is is impacting my life so terribly. I guess if everything else was going well it wouldn't be as impactful.

 

I have two swabs to send in for testing. I am petrified they will come up positive and petrified they will come up negative. I can't win.

 

 

[2Legit2Quit]

I dunno... I'm not sure I feel that you have gshv1 after all this time.

[whitedaisies]

So what do I do? If you were me what would you do? I don't know how to live in this ambiguity. If I am a risk of I am not. What do I say to a sexual partner? How can I stop fearing sex?

 

I just get lost in the panic and anxiety of it and I know what it feels like to get it (or think u get it) so I don't want to do that to anyone.

 

I dunno lost still.

[2Legit2Quit]

From what I googled, doesn't look like HSV which is chronic. Cause inflammation in that way. The type of inflammation test, is looking for a type of protein, which is the type where it's attacking it's one body. HSV doesn't do that.

[2Legit2Quit]

*own

[whitedaisies]

Inflammation is response to infection.

 

It's the body's immune response

 

Hsv is an infection wnd if the body overacts to response then it will cause inflammation.

 

I am not saying it happens to everyone but would make sense in my case.

[fyrefenyx]

Sorry, but what is LDN?