Morgellons Symptoms

[lindsaykay]

Sue, Baraka, Sammy, Ghettogirl........My heart goes out to all of you! Thank you for your posts.

I'm gonna give a little run down of my experience and hopefully answer any questions that have been asked of me, as well as give my input on what my theory is for treatment.....not cause! (Since nobody really knows for sure).

I have lived in WA state my whole life. I'm 35 years old now. I did take a couple trips to Mexico when I was about 12 years old. On one of the trips I became very ill (flu like symptoms) Nothing long term, but very very sick! I got better within about a week if I can remember right. The only reason I'm mentioning this is because it could or could not be one of the pieces to this puzzle. (I ate soup made by the locals .......made of mexico's water) Which was likely what made me sick on that trip. I was warned not to drink their water because of the bugs and parasites that americans bodys can't handle, thus making me so sick. ....I also recall getting bit by a very strange prehistoric looking praying mantis type bug when I was camping in washington around the age of 9 or 10.......K. I mention these things because they are two things that stick out in my mind regarding the possible cause of my problems......Maybe not, but who knows if it's connected?......Enough about cause......because the only thing that matters is where i am NOW! SICK! UGH!

So.......I have struggled with Heartburn (major heartburn so bad i VOMIT) since about the age of 14.....I had saught help from doctors but they only did what they do best...."Here, take this" That continued into my adult life. I was relieved to find out when they came out with the "1 heartburn pill/24 hours"....Took that for so long and then I got to thinkin........What good does it do your body to "stop the production of acid in your stomach"? That can't be good....you need acid for proper digestion! WTF? Catch 22 for me....Do I take the medicine that relieves the severe discomfort? or do I try to fix the root of the problem?

I have had a couple of these strange sores in my lifetime.....one near my nose when I was about 17 y/o.....and another sore sometime a few years later (it reminded me of the sore from when i was 17).......Nothing major, they both slowly healed and my life went on.....i had my first child when I was 19, 7 years later i had my daughter....No major health problems other than the heartburn and some times of fatigue (which i thought was weird) How come I was soooo tired and had no energy....compared to others around me. I got used to the tiredness though, and would just accept it. I alsol had some joint issues in my 20's........I had a surgery on my right shoulder after 6 months of intense physical therapy. I healed from that....Life went on.

Heres where my journey really begins.........In November 2007 I had an elective "Tummy Tuck".....Thats right, elective plastic surgery! My life took a whole unexpected direction! It has been a nightmare ever since! From the start........My stiches started coming out, the tissue around them started dying...I smelled like a decaying body. Cuz thats what was going on....I was decaying right before my own eyes. No control. The Numerous doctors and emergency rooms refused to help me. All they would do was pass the buck and point the finger at the surgeon who caused all of it. I do not exuse that man for his bedside manner...He was a true ******* regardless! I was diagnosed with MRSA 5 months into the ordeal, by a walk in clinic doctor that I had seen because i had 3 wounds that look like brown recluse spider bites (The plastic surgeon claims that although my stomach was decaying, i did not present a fever...therefore there was NO reason to test for infection....I was bed ridden for 1 1/2 years....expecting my end My poor kids, my poor mom who had to step in (thankfully). I was laying on my couch with an abdominal wound open from hip to hip, and from the pubic area up to where i USED TO HAVE a bellybutton. Horrific! I looked like someone was performing an autopsy on a dead body...I have a photo diary of this break down.....Its nasty, but im open to sharing them if anybody thinks it would serve a purpose. One thing to point out....During the break down of tissues, I thought it was weird that the plastic fishing wire type strings were exiting my body.....Some were nylon-ish fibers, and some were clear plastic! It was explained that my body doesnt break down the suture material and thats why they were coming out of my body. Yuck! I am still unsure if this was fibers from Magellons, or the actual sutures hmmm???? Either way, it was man made material that my body couldnt process. I went on to have 3 life saving surgeries.....Which all had complications in healing.

Enough about the bulk of that nightmare! Something inside of me wanted to live.....I was sure i could do it, for my kids! I decided to get my health back myself! **** the doctors! I quit taking ALL the meds I was on xtra strength Percocet, Lyrica, Celexa, High blood pressure meds...and the list goes on! I QUIT! I even quit going to Physical Therapy. I was deemed disabled after applying for benefits through our social security...yet i had no more health insurance until I was disabled for at least 24 months.......makes no sense to be medically disabled and not qualifying for insurance until you have been sick for at least 2 years...Maybe they hope you will die before they start advancing funds to return your health! Hmmmmm........

Anyways, I gave the middle finger to the Western Medical industry and got my health back. as soon as my wound healed I joined the gym and started slow. Water aerobics to yoga to pilates to zumba.......I had lost the 80 lbs i had gained while being immobile.......I was still very tired and my body hurt like hell, but i did it! I sued the A-hole Doctor that did the surgery...settled out of court last february cuz i could not take the stress of the lawsuit anymore....I walked away with enough money to pay back the people i owed, and to go to the Optimum Health Institute in San Diego, CA. I had always wanted to go there for healing, but could not afford it. Their theory is that the human body can heal itself of disease. I stayed there for only 7 days....Although they offer a 4 week program. I could not be away from my kids for the entire 4 weeks, so i chose to do one week at a time.....over a period of a couple years if i can come up with the money to go. Their holistic approach heals! I am proof......They offer a 100% raw vegan diet, colonic clinic, massage clinic, education on the importance of digestion and ph balance.....emotional detox classes, sprouting classes, and their number one whole nutritional food supplenment....Wheat grass juice! Good stuff! It heals! other people there were healing from cancer and other diseases as well. I continued the raw for a while after returning home Id say about 70/30 raw diet...I occasionally would take wheat grass juiceat my local health bar and deli...I began to feel so great (low energy levels and joint pain were starting to diminish) I even started training in Brazilian jiu Jitsu with my kids (i wass trying to repair the damage done to my family, and regain closeness with my children) I even fought in a tournament on Aug 20th! Can you believe it??? I was coming back with a vengance!.........Here i am though I broke ribs at the tournament and once again......healing very slow! My joints began to hurt incredibly, my energy level has gone down the toilet, and my memory is really bad...I drop things, Im super irritable, and depression seems to be setting in Could be because i just found out about morgellons. Im not sure.....But i do know this....

Ive been here before, and I know what works for me personally in healing.
Im back to 100% raw organic vegan diet (for 2 weeks) then I'll go to a 80/20 and eventually stick with a 70/30 (70%raw/30%cooked)adding cayenne pepper to almost everything to raise my internal body temp since im to weak to work out right now.

Im going to balance my PH and take all these supplements (Not recommended by the Optimum Health Institute, but I believe probiotics and some of the other stuff im taking are necessary to treat the immediate attack on my body.

I'm taking Manuka honey internally 1TB as well as smearing it (1part water/20parts manuka) on my lesions......This is a miracle honey I swear! again, Bio-active 16+ is better for an active infection.

I'm washing all my laundry in borax, salt and detergent.

I'm cleaning my house top to bottom with white vinegar and water

Im brushing my teeth with baking soda and peroxide

I'll let everybody know how this all works for me

[sue f]

Originally Posted by Jo

Sue- Welcome to MDR, you can email me at info@morgellonsuk.org.uk.
There are a number of sufferers in Ireland that I know will support you, along with all the good people here at MDR.

Jo

hi Jo i sent an e-mail to that address is it informorgellonsuk.org.uk? i hope u got it and hope to hear back from than you so much ...

Sue x

[lindsaykay]

And I spelled Morgellons wrong in my previous post. oops!

Im not sure if my Dad was in Vietnam....He was in the US Navy though...I'll find out his years of service.

here's a few things that I do know:

I seem to run a low body temp....always have! seems to stay around 96.7 degrees ( i hear this is a common trait of Morgellons sufferers) Working out probably raised my temp enough to combat Morgellon. Not sure though, but I do know I felt much better when I did. My Mom, both my kids, and my Maternal Grandmother run low temps as well.

There was no explanation of the tissue breakdown during my surgery nightmare...The doctors were all confused.

One theory i read about morgellons and Toluene poisoning made some kind of sense to me. Bees mistake that for food, and bees and other insects are attracted to me.....Ive always thought it was cuz my blood was sweet hahaha Toluene makes more sense

Ive always had chronic heartburn ( a sign of ph imbalance) creating an environment for this thing to survive. didnt matter what i ate...until i went to 100%raw vegan.

My daughter is allergic to strawberrys (or likely the pesticides on them)

my Mom has bursidis (sp) in her hip that flares up depending on what she eats (gluten is something she avoids)

My son went through a few years where he was diagnosed with ocd.

Maybe these small things that have affected my family are nothing, maybe they are misdiagnosed problems rootted in Morgellons...Who knows?

[Baraka Obam]

Now that you have a digital microscope you can diagnose also.

Have your family members spit on the slide, the best way is poo, but then its kinda hard to tell them your toilet is out so please go on the paper.

I have to laugh now, LOL, its just too funny some times.

If they get all funny about the spit ask them to humor you, it will make you feel alot better.

If not then just use it on their skin, the black specks, fibers and other issues should present themselves.

If you do use poop, you will need a tooth pick and a tiny bit of water to disperse it on the slide.

These digital microscopes are cheap and they work fantastic.

[absurdlyhaywired]

Hi all-

So many strange goings on with this illness that I sometimes
even forget about a symptom until it comes around again.

The first two years I sort of kept a scribbled "journal" but noone
was ever interested so that's turned into to a pile a mixed up scrap
paper notes that haven't yet been transfered to the "journal" proper.

I don't think I need to do that anymore and I'm not likely to forget
too much. I can refer to the notes I have if needed-no new/different
symptoms have appeared.

I cleary remember THIS symptom,as it's been occuring frequently as of late.

Both arms have been bad with lesions for at least six months now and
I don't get any reprieve/remission of this anymore. Lesions aren't
always as large and deep as in the past-just more-entire arms,close together. Crazy pain and itching.

My question concerns this...On the back side of my upper left arm(happens
with right arm but not as much) I feel bad pain,deep inside. Reminiscent
of the feeling before a herpes eruption-but different-much larger area-
more painful and annoying and definitly gets your attention.

And I can never decipher which lesion it's coming from-but at those times
I need to work at them all-you know, plastic type problem.

And the whole upper arm will be very swollen and hard like I'm really
strong like I used to be. It makes it hard to really get a hold on anything with the tweezers or any tool.

At these times I've been saying,out loud I must confess-I say to it
"Hey,this is MY arm, and I have the tweezers,and I'm not interested
in how much pain you got for me anymore. Don't even care."

Then I just dig that crap out without even aiming for anything in particular.That doesn't matter anyway because almost just as much
crap debris comes out of the rare "clear spots"

Then I'll feel some relief,it always surprises me, and the arm will
be completely different than it was-the color is way different and
there's great relaxation. Hardness is gone, all back to flab, but normal
maybe. I've forgotten what normal would be.And this happens without
any type of fluid being released to the outside-and any bleeding is stopped.

I wonder about all this crap. One doctor a long time ago said "There's gonna be alot of scarring from that. Go home and cut your nails."
My nails were hardly to the ends of my fingers. Who cares!

I've yet to see scar one.

Sometimes after that the specific pain will be gone. Sometimes it's just
reduced. Either way it comes back in a few days.

What do you guys think? Lymph related? None of my lymph nodes have been
enlarged at any of these times.Or ever as long as I've had this "disease"
as far as I know.

Anybody? Thanks guys.

[absurdlyhaywired]

I recently scoped with my little ancient pocket scope 20X 40X 60X I hear you... The very tiniest almost not there
black specks from deep in skin.....

They are black fiber bunches much resembling the large fibers when
they're bundled together. Surprised me because they sure look like
solid specks with the naked eye. I've seen solid ones also.

[posey]

Here is a link for the Tc article and cystic fibrosis
Terminalia chebula - Cystic Fibrosis

Here is another:
New Research Clongen Lab: Herb Terminalia Chebula

[tcmgpt13]

quote=posey;88140]Here is a link for the Tc article and cystic fibrosis Terminalia chebula - Cystic Fibrosis. Here is another:
lymeneteurope.org/forum/viewtopic.php?f=6&t=2686[/quote]

The 'research' quoted in both these links is not even close to official and proven medical research. It is a stretch to think that this herb, even if effective for biofilms found in those with cystic fibrosis (and that's a question too as to effectiveness), will treat every biofilm out there. Some doctors and researchers do not even accept the lyme biofilm theory to start with. This is what the person who posted on the link you provided actually said about the information which was originally found on the two frogs site:

'If this is credible research with promising results, it should appear in an established medical journal for peer-review and further patient clinical trials, NOT just in their Goodbye Lyme newsletter.'

I could find NO study on pubmed which shows this herb has been effective against lyme, lyme 'biofilm' or the neurological effects of lyme.

It would probably do more good to take the mixture called Triphala (contains Terminalia chebula) which treats the colon and gently improves bowel function. Taken over time this combination of herbs could effect some real change in the body. It would be less likely to harm someone whose dosha is not suited to straight Terminalia chebula which is a very astringent. Triphala is balanced and can be taken by all three doshas as described in Ayurvedic medicine.

[ooomandy]

Had given up trying to find out what happened to me until I saw article yesterday with a new word to me -Morgellons.
I live in Sacramento, CA. In 2006 I spent days trimming some very overgrown rose bushes that had black spots and some kind of disease. I received about 7 very deep thorn puncture wounds.

In treating the wounds I started having severe itching and crawling feeling around the wounds and the the area all around became red. This was the beginning of a skin disease that lasted for 2 years and spread up from these areas.

I had to cut little pieces of fiber out as they grew to stop them from spreading . I actually kept some of the little threads in a jar to show to the Dr. but he didn't know what they were. I tried everything but I could only contain the spread not stop it.

Then I fell from swimming pool ladder and broke my leg in 8 places. I went through 4 surgeries with 13 blood transfusions. As a welcome side effect - Something -the antibiotics, the surgery drugs, new blood or who know what - wiped out the disease and my skin was healed.

So glad to know disease has a name and I know without a doubt - it all started with puncture wounds from diseased rose bushes.

[annesco]

Two days ago, I noticed a small, red bump on the side of my neck, near the back. It was pretty itchy, and looked like an insect bite. I put some lavender oil on it, and didn't think much more about it. Then yesterday, I noticed that the bump itself had gotten smaller, but the area around it has become red, and the entire area, including the small bump, is very, very sore. The bump has a small, white center. Now there seem to be slightly raised areas like welts surrounding it. They're flesh-colored and don't have any white centers, and aren't noticeable unless I touch the area. I've applied bactroban and neosporin, and they seem to help, but it's still pretty tender and red in the area. The original "bump" is very small now.

It could well be some kind of bite, as I tend to get an inflammation from black flies and mosquitoes, but it's winter here, and it shouldn't be a problem.

Has anyone else had these? Is this how lesions form? I've never had any before, so am concerned.