Introduction

[Powderkeg]

Hi all

As sad as I am to be introducing myself here, I am so thankful to have found this place.

I am a 30yo single Mother of two, I have had symptoms of MgD for a few years but they became severe last November and then exploded into nearly debilitating over the summer with a traumatic event in my life.

October of 10' when my son was 6 months old I started loosing chunks of hair. I had already gone through my post pregnancy molt and so it was definitely something I found unusual but not imediately alarming, I also started getting lesions on my face that refused to heal but I chocked it up to hormones or diet. By the beginning of January 11' I was loosing handfuls of hair every day, my weight dropped drastically, my vision started getting worse and the lesions not only had not healed but had gotten worse and were filled with what I thought at the time were whiteheads. I sought medical help and my Dr ran tests but could only find this I was significantly anemic and had a vitamin D25 deficiancy. He told me the hair loss was normal after pregnancy and that I had adult acne (I argued this point because I did not have acne but rather bumps that seeped clear fluid and opened into large lesions) but he would not listen and would not send me to a derm.

I started getting sicker and more exhausted, my hair was still falling out in huge chunks and the roots had goop on them and fuzz throughout it, though at the time I had no idea that it meant anything. I also started feeling nauseous and had the sensation of pin pricks after I showered and moisturized my skin. I returned to my Dr. Twice more to address the hair loss and he continued to tell me it was post pregnancy hormones!! (My son was 14 months old by that time!!). At the end of July my ex Husband kidnapped my 5 year old daughter and as I weathered the most traumatic experience of my life and fought to get her brought back to Washington, my symptoms completely exploded. White splinters came out of my skin everywhere, in the mornings I would notice tiny blood spots all over my skin and my bed sheets had sand and black specks in them. The tiniest scratch would bleed like crazy and any wound bigger than a tiny scratch usually needed a tea towel to soak it up. My hair changed texture and became frizzy and static, no amount of product helps. Then I started to see the thread sprout from my skin especially any place where it was compromised with a scrape or lesion or even just simply after applying moisturizer sometimes....needless to say, THAT completely freaked me out. I had googled my symptoms many times and always come up with Morgellons but I refused to believe it could be Morgellons because it seemed so bizarre that I did not want to accept it as a possibility. I had been turning a blind eye to the fuzballs and fibers that had been there for months.

So now here I am, trying to go through my daily motions and ignoring the pain and fatigue as best I can. I am learning every day what I can do to lesson the symptoms and how I can weather them when they flare out of control (in the middle of an out of control flare now) for the most part I do it on my own although my family and a couple of my close friends know and actually believe me. My sister makes me laugh when she said "Leave it to you to get a sci-fi disease!!". She also jokes with me that I can't even get a disease that has a bracelet or a walkathon!! I just take the opportunity to gross her out by threatening to knit her a sweater out of my skin threads! (my family has a twisted sense of humor!!).
My Dr finally wrote me off as a post pregnancy hormonal lunatic I am very careful not to talk about this to the general public anymore and usually just say I have an auto immune dissorder because then people don't look at my facial lesions and think "meth addict".

So far I have found that whatever this is it HATES colloidal silver, green tea extract and green clay. When I use those My body purges this junk like mad but the detox is worse than the day to day so I haven't done one in a while. Sleep is VITAL and as soon as I loose out on big chunks of sleep my symptoms go nuts. Unfortunately rest is tough to come by when you are a single Mommy playing Santa's helper so I am going through a really tough flare right now and I look like an extra from Walking Dead!!

The thing that scares me more than anything is that BOTH of my children have symptoms. My daughter is 6, my son is 20 months and I am terrified for them.

I pray for an answer and a cure every single day.

Sorry for the novel!! if you read this far you deserve a treat!

Thank you!!

Powder

[janedoe]

powderkeg ( love the name) sounds like your stress is a big part of your problem too, did you have post pardum depression after your baby? if you did, then talk to your doc about getting that under control first...
youve tried colidal silver? detox? how long have you had this? where did you hear about remidies?
see, when my exhusband kidnapped my son, the last thing on my mind was my skin, no matter how bad i was....so its hard to fathom your doing research on morgellons with that going on, but i dont know your story.
i do know stress makes anything way worse, so you need to get that handled.

[Clara]

Hey there. I'm so sorry to hear what you're going thru!

I've got to get around to writing my own 'novel' - and it will be one, too! I agree that stress is a killer. Even tho I was against it, I finally relented and started taking something for my stress. I only take it when really necessary.

I've had this 7-8 years (foggy brain function - can't even remember when I got it!). I just went to my Neurologist, who I see for migraines. He believes me that I'm not crazy, and just got a new patient that has my same symptoms. He agreed to do some blood tests for me- testing is something I've put off all these years b/c I figured there was nothing anyone could do to help me even if they find out what's wrong. This is the most bizarre sci-fi disease - it really does feel like something out of a movie!

But since I've found this site (just a week or two ago), I actually have hope of regaining my health. Even tho nothing else has changed, I feel better just knowing that. You'll get lots of support here - everyone's so nice & helpful.

Well, keep us posted on how you're doing. I'll post my test results when I get them.

Oh, and I LOVE your sense of humor! Sounds like my family - exactly!!! I'm on the floor laughing about your sister's comment about you contracting such a bizarre disease. I'm glad you've got someone to make you laugh!

Happy Holidays. Hang in there. Clara

[scabdraggr]

you can stop the silver as it's a waste of money.Yhe ocean does wonderful things for our skin but it's kinda cold for now so try heavy salt in a bath that you stay in for quite a while.You must be one tough little lady.

[Baraka Obam]

Welcome dear lady, sorry you have joined us, yet elated you found out what your facing.

There is help here for you, its not all that, but its the best there is right not.

There are many ideas here and be aware some could harm you, be careful.

Every time I read a story like this I realize how tough you gals really are, taking care of little ones and yourself.

It is literally a crime the way we are treated, its third world barbaric.

The reason the doctor says the hair loss is normal is because NOW IT IS.

This disease has spread into every corner of American life, you can literally see it on the faces of the rich and famous. That list is not short it is LONG.

Change your diet and do some form of exercise, that will help, get into that tube with hot hot water and salt or baking soda, LOTS OF IT. Two boxes of baking soda is kinda nice.

You can also mix baking soda into your shampoo and let it sit on your head before the bath, this over time helps the skin for sure.

[Powderkeg]

Thank you all for the warm welcome!


Sorry Jane, probably should have clarified the situation around my daughter a little better. It took me 6 weeks to get her back to this State and during that time I never thought of anything else but getting her home. That was the timeline when the symptoms went birzirk and I couldn't ignore them but didn't take the time then to researched anything or try to find a treatment regime, I just soldiered on taking care of my son and fighting for my daughter. After I got her safely home and the symptoms did not improve I started doing research at that point and had to accept that Morgellons was indeed what was happening to my body. As far as the things I have tried to ease symptoms it has all just been my own trial and error because I have always loved holistic remedies (went to massage school ten years ago) so I started trying things that I knew were helpful with skin problems like green tea extract and green mud masks. I wash daily with a face wash containing sacrylic acid and havent had any issues with it (I had read several people say it made their skin react) so I am thankful that I am able to use it. Epsom salt baths have been something I have done for years to ease muscle aches or to soak a wound but haven't tried regular salt and haven't tried baking soda yet so I am excited about trying that one to make my skin feel better!! I used to glop baking soda into my shampoo years ago to strip hairspray or other broducts out and I remember loving the way my hair felt afterwords.

I can absolutely attest that my symptoms tend to get worse under stress and or lack of sleep but I haven't taken anything for it. I just try to be hyper aware of finding a zen moment here and there (yeah right for a single Mom but hey its mind over creepy sci-fi matter lol) and listen to my body when I need rest even if that means that dishes get put off till the next day. The brain fog is a killer though and I was taking meds for ADHD which did help, unfortunately my insurance is not active at the moment between jobs so I haven't been able to take it and count it a blessing when I can remember to write the list that helps me remember everything!!!

I like to think of myself as tough and having family that believes me is a Godsend but for the most part I suffer through it with my big girl pants on and keep my struggle close to my fuzzy chest. Baraka, I could not agree more, the way we are treated is CRIMINAL and barbaric is one of the best words I have heard for the medical communities reaction to us. The day WILL come when Morgellons is an acknowledged condition, there will be bracelets and walks but sadly I feel that much like other diseases/conditions accepted and understood now after decades of being written off, the lot of us may be long gone when it finally happens but I tell you what......I will be sitting on my fluffy little cloud strumming my harp and hollering SEEEEEEEE??? TOLD YA I WASN'T CRAZY!! When it finally happens!

Thank you again for the welcome, I feel better already!!