Hard to explain

[Ghettogirl]

Hi everyone,
Guess I am feeling a little blue today. Thinking about this Morgellons that I am inflicted with. Thinking about how much it is affecting my life, my relationships.
How does one explain all of this when I can't even explain it to myself? The details of morgellons is "so out there".
There are people, family, friends that have changed how they think of me and treat me because I have changed. I can't tell them what I am going through with the morgellons but if they only knew and could try to understand then they would realize that I am still the same person inside. That I am not avoiding them, and that I am trying to take care of myself and family. That I am not a slacker or a flake.
So much doesn't make sense and I am always trying to make sense of everything.
Thanks for letting me say what I can't to others.
Ghettogirl

[KiraErikson]

This disease teaches you really quickly who is the deepest kind of friend. It is very socially isolating. I lost my two best female friends of over 30 years each. They couldn't handle it. I now live life as a social hermit.

One way you might try to explain is simply say that you're sorry you can't be there for someone the way you used to be, but you're currently dealing with a close family/friend tragedy that you can't really talk about until it's resolved.

[jonsi]

Looking back, when I was really sick I think my personality changed too... I became a recluse, didn't answer the phone or door. I would have panic attacks over something so small as having to open a jar of peanut butter (brain fog and my hands hurt so much).

Has anyone else noticed that we are very sick with "M" our voice changes too? Kinda screechy & high-pitched?

My good friends worried about me and didn't believe me. I have been "healthy" for over 3 years now & my friends are back. Give them some time. I do believe there are stages of "M" and you are going through the hardest parts.

One of my best friends found out she had "M" over 2 years ago. She is still the recluse...

When I try to explain "M" disease I tell people that I have Lyme disease with fibers (and leave it at that unless they want to ask questions). I still can't explain "M", even to myself! It is soooo complex.

Hang in there

In the white light,
~jonsi

[JimDoe]

This seems to happen to a lot of us GG. Sorry its that way. I did not really lose any friends but if it had gotten much worst I would have become a recluse as well. The only time I was recluse was when I had the selsome blue and salt goop in my hair for days on end. jonsi is right personality changes do happen. And its not I don,t think self pity over this ordeal. It,s a real mental change. For me I became angry let my house go (not cleaning) no will to be creative anymore. Less interest in my hobbies. I was walking stooped over when I hit 130lbs like I was 85. But I almost always got out and did what had to be done with friends. They knew I was sick and just thought it was cancer. But I,m not scared of this and told them it was morgellons and fibers disease. Heck none of them knew what that was anyway. If you will follow some of the health advice here I do beleive you will get better. And I do wish that for you GG.

[Baraka Obam]

Today is the day we learn the excuse.

The excuse must be long term, so lets add a little anti immune responce that has gone hay wire.

Now you are having your immune system attack your body and organs.

Lets get to the part where you do or don't want them to be around you, do you have children, do your friends work with your husband or wife,

If there is no children or spouse to embaras with your diagnosis, you could use impetigo for the lesions, common situation but VERY contagous, so if you do not want them around untill you get your skin back on you. there is a good one

But remember, this is not easy to undo once the worst is over people will always look at your sores.

SO, lets say, these are benign skin tumors complecated by the auto immune disease.

You may also tell them that you are very ill from it, and actually do not like to be seen like that, its offensive to your vanity, if they are women they will understand that.

Friends that leave you behind, are not friends at all, they are just kinda needey and you were a ear they could bend or get some company from.

Family, LOL, thats a real funny situation, some times you wish you could pump them full of this wait a week and see how they are doing and riddle them with stupid stuff like, you have to see a doctor, LOL, get more sleep, eat better, your acting crazy, take vitamins, see a doctor, LOL, that double take on the doctor was just for good measure of the million times I went and the million times I was told to do it again.

Never tell anyone there are bugs, that is so important, when they look it up online it will quickly come to Morgellons and crazy.

That is as sure as the sun coming up tomorrow

[carla]

Morgellons changed me completely.I became a social hermit thinking I would infect everyone who came into contact with me.
I even stopped hugging my kids .
Once I accepted that it was in the food and changed my lifestyle I realised that I was infecting no one.They were infecting themselves.
Now I'm back and a stronger person for it .
I no longer fall apart every time I get itchy or notice a rash on my Children.
Who decided it was incurable before we even knew what it was?
It s caused by a severe lack of nutrition. Eat raw foods for a few weeks and watch it go away.

[sammy]

This truly does change your life. I dont go on vacation any more, really dont like too leave hone that much. My husband and I use too go to one of the carribean islands every year and I no longer have a desire too do that. I go too the pool everday and swim but that is about it except for shopping. i get so hot all the time feel like iam dying. your personality does change and I of course dont discuss this with anyone. which closes many doors since family cant be a part of your pain. sammy

[Ghettogirl]

Thanks all for replies regarding "hard to explain".
I haven't noticed my voice changing but everything else on/in me seems to have.
I have always struggled with my weight, and I was a little chubby when I first got this dreaded disease but now I am huge!!! I have gained probably 30 pounds over the last 2-3 years. Yikes!! I hate it!! I can't stand to look at myself. And omg, it's harder then ever to loose weight now. Has anyone else gained weight from this? I am sure a lot of it is due to not being as active, hell, there has been times when I realized that days would go by and I hadn't even been out to the mailbox.
My hair has been my worst issue with the morgellons. Those white hairs from hell took over my scalp and just ruined my hair. For awhile there, my hair was just a matted mess. I use to have great hair, lot's of body and shine. Now it just hangs and I keep it in a ponytale or in a clip. (can't stand to feel my hair touch my body, especially when wet)
I was always the kind of girl with lot's of clothes, dressed well, would fix myself up, loved make up and all those other girl things. I am now so not that way. It's very depressing. I miss the way I looked. And I know it sounds vain, but it's because I look so bad now, so different that I keep away from going out, or hooking up with friends, etc. I want to go and do things but I am so ashamed at how I look now, it keeps me from wanting to see some people. Between that and the "bad morgellon days".
Some of my family knows about the morgellons, like my immediate family. My boyfriend has it, but still is in denial most of the time.
That's why you guys and this website is so important to me.
After all the itching, bites, the bizarreness, the laundry, all those websites trying to make a buck, the "cures" that insincere people claim.........
I know I can come here and feel a sense of reality, compassion, support, information that I can't anywhere else.
Take care everyone,
Ghettogirl

[janedoe]

hang in there, ghettogirl, at least your not alone. WE know your not crazy anyway!

[KiraErikson]

I have found that the leprosy drug Rifampicin tends to clear my scalp of Morgellons. When you first start taking it, the bugs will fall all over your face as they leap out of the scalp area and then attempt to reinfect the face. I use Eurax creme (for demodex mites -- prescription required) on my face and wipe it frequently with Cottonelle toilet paper to remove bugs falling from scalp.
Use of the leprosy drug Dapsone with the Rifampicin seems to kill the bugs in the formation stage. Use of Bactrim seems to help with blood cells infected with the bad rna or parasite. Use of colloidal silver helps with itching reasonably quickly.

Normally (and thankfully, these days again) I could comb my hair in about 3 seconds and not worry about it all day. At one point, the Morgies in my scalp were so bad (that despite losing 1/3 of my hair to it), it took 45 minutes to comb out my hair. There is something electromagnetic that happens with morgs. At one point I had bald patches on my scalp and my hair was standing straight out like Bozo the Clown.

I also noticed my scalp was dry. Taking ivermectin kills the adult morgies and allows the body to produce protective oils again (at least for a few hours while the ivermectin is working). So take Dapsone for long term control.

Of course, all these drugs make it impossible to get out of bed many days. On the other hand, sometimes I'm ok for a few days and feel normal (and don't take drugs -- more and more this is true).

Morgies also made my pubic hair start to seemingly get grey hairs -- except all the white pubic hairs turned out to be clear morgie hairs, and I learned to pull them out. Under a magnifying glass I would see the little goo on these clear hairs.

The morgies also hate ocean water due to the salt.

I noticed a strange corelationship while dealing with morgies in scalp. I had a lot of callouses on my feet since I was 9 years old. The morgie meds made the callouses start coming off reasonable easily using the over the counter Kerasal ointment (and I tried for countless years to remove them).

The more the foot cleared, the more the scalp cleared. very strange