Bad Day

[Dwn2rth]

Hi Everyone,

Just need some well wishes. I'm a few months into whatever this is, and today is such a bad day. It feels like the mites are at work again, they feel like they are running all over my body, and I have the small whitish droppings all over my clothes. I've been working from home the last few days because I don't want to go outside in the cold and wear a hat. Just the thought of putting a hat on is stressing me, how stupid! As soon as I cover my head, they start running all over the place. I live outside of Chicago, so I can't go hatless for long. I looked at my arm and I see two long hairs on my arm, and I know it isn't hair. My follow up appointment with my second derm is next week, and I already feel defeated. I know he will just say there's nothing there. I'm just really trying to imagine coping with this physically and emotionally forever! I've always been one who doesn't break down easily, and I'm breaking badly. I haven't had a good night's sleep in months because of course that's when the crawling get worse. I know I have to take things day by day, but when I think about things like wanting to get married, it's just depressing. I just needed to vent a little, it's just been a struggle today, and I'm dreading trying to sleep tonight, another stressful thought.

[Sadsack]

Ohhh...dwn2rth...

I'm so sorry. You can vent all you want. This is just an awful, awful thing to live with and you have every right to express these feelings. Everyone one of us has been there, and most of us still visit there on occasion.

There is help here - you can get better. I know someone who met a man two years after getting this condition and they got married. Yes; and she works, has weekend company at her house, gardens, and swims in the lake.

Hang on. Focus on the treatment threads and get better. We are here for you!

SS

[lamb]

Don't give in and don't give up! Get on a vitamin protocol PDQ! Find a hat that you can rinse out everyday but stay away from microfiber. I too froze my a** off today as I washed my jacket into oblivion last year. Read as much as you can and you'll eventually find a system that helps your symptoms. I spray my stuff with enzymes and let it dry inside out on a hanger overnight. You can go to Petco and get Nature's Miracle it's urine cleaner for cats and dogs. Put it in a spray bottle with some peppermint oil and spray your stuff when you come in. This is a temporary fix at best. I spray my environment with enzymes everyday. These guys all use Eco Vie or Bug Arrest, I like Tweet Mint by Safe Solutions but it's really expensive. Use it like it's gold, sparingly. There are lots of protocols but I have the itchy clothes issue too. Try Washing your clothes in Dr. Bonner's Peppermint Soap, great stuff.

[-----------]

Hi Dwn...

There is a period in the beginning that the way we feel with what's happening to us... it's just terrifying and depressing... and to find out our doctors are clueless, can't see this, won't look, and give us symptom medicines - if anything... anyway, most all of us have been where you are, you can talk to us out here all you want to, we understand.

We ALL got better after this first part. There's a period of a few months that knocks us down... but, with the help of friends and good information out here - you'll get back up before you know it.

There appears to be a fungal element to our disease, do things internally and externally for fighting fungus. Get your doctor to test for fungus - it appears the MAIN Morgellons fungus doesn't show up in testing BUT... there are other ones that ride along and can be seen. If you could get some fungal medicine from your doctor, it would probably help?

Don't feel that this is 'forever'... there have been many to become symptom-free and if it is - then, possibly there's a nice, good-looking Morgie guy out there somewhere in your future? We have to remain optimistic, so don't give up hope, anything is possible.

AND... all the things Lamb recommended sound excellent! Nice work, Lamb.

[jonsi]

Hi down to earth,

Welcome to this site.

I agree with what the other members are saying here. I think the best day of my life (after I discovered I had "M") was when I found this site. I think that you will get through the horrible phase you are going through right now. My 11 year old daughter & are are pretty much symptom-free now.

As far as I know I have never given this to anyone else.

Besides all of the advice we all give you for pharmaceutical meds/homeopathic/natural medicine , etc, I feel it is very important to shut off the television (fear tactics) and start listening to your favorite music! Dance and sing and tell the "Morgellons" they are not welcome in your body and they must leave you alone. Meditate. Believe...

Just happens this show is on my local PBS station

YouTube - THE SCIENCE OF HEALING WITH DR. ESTHER...

This I'll start a new thread.

In the white light,
~jonsi

[Baraka Obam]

Thats a right on post, I turned in the tv box, goodbye sweat brain theif. The music is better, the savings are best. Its sorry to see more and more people come here for repair, but its good they have such a great bunch to help them.

Here is a huge tip, try one thing at a time, ask about useage and results. It seems with most every compound that works well on this malady, first it gets worse then it gets better.

[-----------]

I'm talking to one of the newbies in a PM about them being in the initial 'freak out' mode and decided to put my answer out here for everyone to see and to get the other 'veterans' to respond that this might help many...

They aren't eating, sleeping, feel 'different', probably worried about their future, etc...

I know I was in very bad shape during this period, I have a mini-theory, based on what was happening to me, as to what might be happening inside our bodies, I've stated it before... it appears that the pancreas is in a 'fight or flight' mode, it knows something is wrong and sends survival signals to the brain and this keeps us awake.

I felt if I slept too much the lesions would take me over in my sleep, I had to stay awake to take care of myself and to fight it. If you read about it, when the pancreas starts this process... well - it's hard to get it shut it off, it just keeps right on producing the insulin for survival.

About this time, I had seen a dermatologist who gave me Orap... Orap is a 'downer' that tranqulizes, not that I'm promoting Orap or any sedative necessarily, I didn't want to take it - but, after about 5 days of the medicine, I became more relaxed. I believe it shut off the insulin drip that the pancreas was putting out. I didn't have to take the full 10-14 days worth of the prescription... 5 days did it.

I was in a very bad place and if you are too... you might want to consider a few days in a row of a sedative? I'm not sure if all sedatives work the same way?

What do we know? We know that sleep helps us heal and is very important. Most lesions can be 'doctored' while you're sleeping, you just put the medicine on and put a covering on it while you sleep.

Eating - is individual... all of us noted that our taste for certain foods have changed, but we know we have to eat something. Listen to what your body tells you it wants.

That 'different' feeling?... It will get to be less noticeable with time, you'll eventually get to feeling more like your old self.

Your future?... is still there. You're just in a bad phase of this disease and you will get through it and hopefully our doctors will get the information soon to help us, we just have to hang in there together and help each other the best we can.

Stress/worry - is bad, we believe that our disease thrives on stress. Do what you can, like those above have recommended, to enjoy the parts of life that make you happier and take your mind off of this - even if its for a little while. I know we feel totally consumed with dealing with our disease... you have to learn to manage it so that you can have a somewhat normal life.

What else are those of you in the beginning phases worried about? And, the other veterans... what is your input to the newbies?

Oh, to Dwn - some of the ladies have husbands that don't have this disease and their husbands are fine with it and it doesn't seem contagious to them... maybe, some of them can speak up?

[Dwn2rth]

Hi Everyone and thank you so much for the support and advice. I have a lot to read, and I know the battle isn't just physical, it's a mental and emotional battle as well.

Kammy, you hit it right on the head about the newbies. I was thinking of switching careers, maybe moving to a new state, taking a dance class, but everything came to a halt. I couldn't dream anymore, so I'm taking things day by day. The depression is scary! I think every bad incident, decision, etc. in my life has popped into my head. My temper with people is short, and if I didn't have bills, I would quit my job and stay at home (this may not be Morgs, just the job). My mood swings are awful, but I find praise and worship music settles me, and gets me back to the right spot.

I'm trying to take vitamins, iron (I'm anemic), fish oil, and DE. I haven't been able to grasp all of the different things people take on a daily basis. I'll have to find what works best for me.

I did find something I was able to use immediately last night, I used olive oil with my DE instead of water. It goes on my skin and scalp much better, but I did itch like the a lot as well, I hope the buggers were suffering and I hope it's working. I'm also taking DE internally, I haven't really noticed anything different so far.

Again, thanks to all of you for your kind words and advice. I'm glad to have found this site, and look forward to getting to know everyone as we push for more research, and a cure.

Dwn

[Kritters]

Dwn,

I so identify with you. Riding high in April....shot down in May. I was on top of the world and then this happened and I was a shell of myself. I'm coming back. And I'm a mean machine!!!

I'm gonna post something from one of our previous members soon that I think will be of value for all of us. She's the one who told me about zinc and much more and I just contacted her again about the dog. Soon to come.

Kritters

[Dwn2rth]

I don't know if I should post this here, but I've really been feeling a lot of crawling the last few days, and last night, a light bulb went off after reading some things. I read about enticing the worm. So, tonight I decided to give it a try to see what would happen. I wish I would have taken some pictures, but I'm going to do it again tomorrow night. I didn't quite know what I was doing, but I wet my arm then rubbed some baking soda in like a scrub. I dried off the arm, then applied some Purell. All I can say is I really wasn't that grossed out. They were little white things, I'm guessing larvae, that came out from under the skin. I didn't notice any movement, but I cleaned my arm up pretty quickly. I did the same to the other arm and both breasts with the same results. I'm going to make a second appt. with the second derm I'm seeing, and I'm going to conduct the experiment in his office. I'm not sure if I'm running against time because I may be in a certain cycle, and it may not work. I know I won't be able to see him until next Tuesday, but I'm going. If anything, I'm going to collect a lot of what came off of my skin and some pictures. He really didn't write me off, he gave me a prescription for Premethrin (sp) to see what would happen. I'm not going to tell him about the experiment before I go in, I'm just going to do it there. I'm itching sooooo badly now, I'm starting to think it's the DE I've been taking orally. Any advice from anyone on how to approach the doc? I've got to go, this is going to be an itchy night, and I need some drugs to quell the itch.