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Comment by Lucie E. on October 16, 2011 at 9:26pm

Lyme Literate doctors may be a good place to get help as Lyme desease used to be mocked as delusion as well in the past. Also, Lyme literate doctors would know more about parasites, bacteria and other Lyme co-infections as some researchers suspect this is. Sadly, there are none in my entire province and I suspect in my country, none that I am aware of in any case. However, in the U.S. there are some.

Good luck,

 

Lucie

Comment by Cyndi Button on July 10, 2011 at 9:25am

I have not been on for awhile, but as I go through the posts, one thing jumped out at me . . .many of us on this site have "special needs" children. Hmmm - I wonder if this means that we had "issues" prior to giving birth?   One more reason to wonder how people in the medical profession can live with themselves.  

I continue to battle with the "bouts" - some weeks are better than others.  I lost two cats this year to this crap, and have two more that are suffering with symptoms.  I wormed them, then mixed food grade diatomaceous (sp)earth in their water, and switched to a cat-food w/o corn products in it.  This seemed to help (a little) but they still have itching.  I brush them with a fine tooth comb to remove the tiny chips of iridescent crystalline formations and fibers from their skin. 

Over the past year or so, I have come to realize that there is a very dark sinister side to "Morgellons," which greatly saddens my soul.  I have come to believe that this thing that has SO devastated our lives, is no accident, but rather a deliberate act and crime against humanity, indeed all lifeforms are being effected by it - sigh. I won't go into it here, but want you all to know that our greatest hope for healing is found in the Lord Jesus the Christ.   I "fight back" by remembering that we are to pray for our enemies, and spend a good deal of time doing exactly that.  

If you want to talk, rant or connect, my email is eleynamatthews@gmail.com.  

To all of you that are still battling (as I am) I send along blessings, love and hugs.

Cyndi 

Comment by Michele Marie Smith on November 21, 2010 at 4:24pm

Hi Kathy, thank you for sharing! I have a pom too~he is a little black boy named Bosco. I have not been on this site for some time as I have been following a protocol on "How I cured Morgellons.com". I was very ill for two years with all the terrible yuckies that go with it. After being on this protocol/MMS and prescription of Bactrim I am now starting to get my life back. Please visit the site or maybe you already have?? I hope your doing well!
ps..do you notice if your pom has been affected in anyway since you got Morgellons?
Thanks! Michele :-)

Comment by cathy fraker on May 17, 2010 at 11:20pm

mary my name is cathy fraker .i have been to many doctorsand of course gave me no hope until 2 days ago i goy back from adoctor from hutchison ks. he did take is time did not make me feel as if i wAS CRAZY and all that and he claimed i have no parasites like we think we have but a nerve disease he did say morgellons but it to do wiyh are nerves inside and outside it makes alittle sense we might all should calm down about BUGS .I AM JUST SAYING THIS BECAUSE THIS TIME FOR THE FIRST TIME I FEEL SAFE WITH DOCTOR. the reason to this also is this doctor is afriend to my co workers cousion and they know how my co worker has been scared for my life in the last month i went down hill fast where i thought i coukd die from thisdiseaseso we made arrangements to get help throug this doctor and tomorrow i am going to my doctor here in my home town to get the meds i need. the hutchison doctor things so strongly that he can make me comfortablea least and that the first time i have heard that. i will keep you post what kind of meds he puts me on.take care until then.

Comment by Sherry Taylor on January 6, 2010 at 7:25pm

Oh, my goodness,
We have to fight this..it killed my dog Molly who i loved dearly. i'm not willing to go that way...like you. Bless you
It's a lot of reading but you should start in bits..reading the various sites and trying things..get ahold of Pamela Mae and Mel's site..there are a few others too ..Mr. CommonSense..there is a lot out there...and start a protocol..and get a support person who understands this.
My experience is that i communicate a lot for a while..then may be dealing heavily with symptoms for a while..back and forth it all takes energy. Then i research..GMO's all of it takes time..but is worth it.
I have 2 children..and taught special needs kids also for a while..so best of luck..you are quite right..you will meet this challenge..with all of us.
Sincerely, Sherry

Comment by joyce dean on June 22, 2009 at 4:11am

She ws admitted dx: morgellan's. Thought they'd "fix her" - she died one week later. They are telling her mother, my 94 year old great aunt, who has just lost her only child, after so much long suffering, that the cause of death was heart failure. When she asked the doctor about the morgellan's... he turned and walked away!

Comment by Mary Jones on June 21, 2009 at 4:22am

Something all Morgellons sufferers need to know: Did the death certificate state that she died from "Morgellons" or "Complications from Morgellons" or was something else written as the cause of death?

Comment by joyce dean on June 14, 2009 at 2:50pm

Thank you I have truly been overwhelmed. I usually have something hopeful or helpful to share with others. But with each response, I am reminded, for I am learning: DENIAL WON'T MAKE IT GO AWAY, & it gets worse...

I only learned of this disease a month before Valerie died...
She battles bravely through years of worsening symptoms, medicated by doctors diagnosing her deluional, predicated by the medicines they prescribed - or lack of, when she determined to disprove that by abstaining from medication. With the Morgellan's diagnosis, & admission to the hospital we hoped she would receive real relief from her pain, a cure; she was skin & bones, with bugs in her tongue anable to eat, or sleep in so much pain she propped her legs up while sitting in a chair, & lay her head on a pillow across her knees. Now the hospital says she died of a heart attack, & ignores any mention of morgellan's. She was only a few years older than me.

So truly in shock I looked into this further & the more I realize, become aware, ironically I slip into denial... but your sharing helps me to face what I must - THAT I MUST FACE IT. Thank you, J

Comment by Cyndi Button on June 12, 2009 at 7:24pm

Hi Sunny

Defeat . . .is never an option for moms . . .but when your child is "special" the fight has a whole new level of intensity.

I am a single mom to a little girl with downs syndrome . . .she is eight. Both of us have suffered with Morgellons since Jan 2007. I am a survivor of Lyme disease as well - contracted in 1999, and have never fully recovered.

My symptoms are worse than hers . . .which must be understood as only a temporary blessing. Symptoms vary in severity as

Morgellons (not a good name but the only one that has stuck so far) has the ability to lay dormant, go into remission . . .

If you can find a doctor that is willing to honestly explore a diagnosis and treat you - you are either
1. Not in the USA,
2. Very lucky
3. Very wealthy
4. Possess superpowers
5. Are a doctor (or married to one)
6 The first five are enough

Personally - I stopped going to docs b/c I will not pay one more medical professional, I mean robot (who isn't going to help anywayz) to give me a DOP diagnosis as I am going thru divorce . . .I don't need to lose my little girl too! Ironically, I have TWO insurance plans . . .cost mega $$ BUT have NOT been able to find medical help/relief whatsoever for myself or my daughter. I have found relief with various natural medicines, essential oils, diet (which is horrible too - I really hate giving up chocolate - I would rather have the lesions, lol) various bathing protocols (but NOT the Sun detergent and alfalfa tabs from the lady with the cat! ) I

am learning by trial and error - as well as the trial and error of others who take the time to faithfully post their findings. Some work for my little family better than others . . . .but nothing cures.

It is my opinion that this is bc Morgellons is not a disease in the "natural" sense . . .one doc/microbiologist is calling it a "Scalar Silicon Nanomachine Syndrome" This is perhaps the best title I have seen so far.

Over the last 2+ years, I have put in literally hundreds of hours of research. It has been my observation that the greatest expertise regarding this illness is Dr. Hildegarde Staninger - you can find her latest report here

http://www.staningerreport.com/#indexMainWindow.html

If you google her - she interprets this highly technical report in an interview that you can watch in a few minutes on utube. .

She is now offering consultations - if you can afford it or there is an outside chance that your insurance will pay for it. "Although Dr Staninger's fees are (very) reasonable, I cannot afford them - I am too busy paying insurance premiums," she says, rolling (what is left of) her eyes.

BTW - Sarcasm helps too . . .keeps the ranting, crying or cussing down to a dull roar. Although totally justifiable - emotional behavior on our part gives "them" more ammo.

Keep in mind that Morgellons causes emotional reactions . . .that are not "normal" responses, but rather brought on by the nano-morg invasion of our bodies.

Having been raised by a nurse (which meant constant exposure to the medical profession) I am sickened by the apathy /greed and disregard for sick people that has permeated the American medical community. They have become like machines themselves . . .programmable robots whose language to no more than a reguritation of insurance codes . . .if you object, then they wave "policy" around like Quasi-moto . . .SANCTUARY!! What happened? Where are the human beings?

When the first symptoms hit - we went from doctor to doctor. After getting the usual treatment of scabies cream (made it worse) and hydrocortisone that didn't work - I did some research and found the University of Tulsa website - and thought I would assist our doctor by bringing in (valid) articles off the internet. One of those articles was writtien for a medical journal. The doctor skimmed the info and handed it back to me as he asked with a snide tone of voice, "What did you do, get this off the internet?"

I was stunned, but replied back "Of course, isn't that where you get your research, or do you go to the library at the local medical school?"

He didn't answer me. Nor did he offer any more treatments that didn't work. I switched practices . . .but just got more of the same. When we went to see the head of the demotology department at a major hospital in our area who barely looked at the lesions on myself and Emily - never looking through a dermoscope or even offering to take a sample to send to a lab . . .then writing a script for more steriod cream . . .It was at this point I realized that I was dealing with something that potentially could kill us . . .I was dealing with denial born of fear, arrogence and greed. Forget about it.

So . . .armed with "internet" research, I got busy trying to help myself and my little girl. After two years, this is my "list" of products and thoughts on healing ourselves.

1. Begin with the idea that you have a verifiable illness.

2. Do not let anyone tell you that you are crazy.

3. Do not trust the medical profession - never forget that M.D stands for MORE DELUSIONAL or MAJOR DUM-ASS.

4. Remember that it is called the "practice" of medicne for a reason. It is obvious to me that they need to keep practicing . . .on somebody else - like themselves and their own families!

5. .Decide right now that you are on your way to total healing.

6. Dismiss all negative thoughts as quickly as possible. It is just too easy to fall into the fear - which is antithetical to healing.

Please for yourself and your loved ones . . .fight back! If you are just too sick and can't . . .call someone. Meditate. Listen to music. Make faces at yourself in the mirror. Make a bullseye out of your doctors face and throw darts at it. Anything to keep the negativity away . . .

7. Never give up looking for answers. Then when you think you found one. . . .test it. THANK GOD FOR THE INTERNET!

8. Try not to pick at the lesions - it's tempting, as it feels like splinters are embedded or coming out of the skin, but you are taking a chance of introducing bacteria into the skin that can potentially make it worse. I have found that Morgellons is an opportunistic infection that multiplies on any scratch, cut or break in the skin. A shaving rash can quickly turn into Morg-hell.

9. If you are up to it . . .get out of the house, take a walk, go to a movie . . .shift the focus.

10. Get a high end air-purifier.

11. Drink distilled water.

12. Clean the showerhead - or replace.

13. Clean the bathtub before and after every bath . . .I use a dilute mixture of bleach and peroxide - a fizzy antimicrobial that cleans without straining my sore joints. If you google this mixture, you will find the US patent office has application for a bleach/peroxide mixture for an antimicrobial cleaner . . .mine is cheaper and I didn't have to wait for an investor to buy the idea . . .lol.

14. Enzyme cleaners work well too . . .there are several out there that work great - I use them when I can afford to do so.

15. Wear gloves when doing laundry

16. Borax, Citric-acid, Vinegar, Oxi-products, bleach and ammonia . . . all good for the laundry. In addition, I change my sheets every other day, never use the same towel twice. On nights that I don't change sheets, I roll them with a sticky roller, then spray them with an mixture of distilled water and ammonia. I also do this to my shoes, hats and purses. .

17. Sticky rollers are your friend. I have them in every room. Use gloves or tweezers when peeling the paper off. .

18. Look for a homeopath, acupuncturist, etc

19. Look into natural supplements to support your liver, spleen. Dandelion root, burdock root, yarrow, yellow dock are some of the ones I found work and keep the intestinal distress down to a dull roar. Inquire at your local health food store or ask your naturopath

20. Prayer

21. Humor . . .Indulge yourself in laughter often.

22. Change the name - morgellons is just too ugly . . .means "black flies" and refers to a condition that is similiar but NOT what we are dealing with. I now refer to it as the "Chia-pet disease" or "Chewbacca Syndrome" For whatever reason, it helps . . .takes some of the sting away.

23. Blogs . . .read rant and realize that you are not alone.

24. Vaseline - no words to describe what relief can be had in that little jar.

25. GSE - Grapefruit Seed Extract - can be used internally and externally. It is cheap . . .and it works better than anything else I have tried so far. I use it conjunction with a homeopathic supplement called Ledum. When I can afford it, I will supplement this with a good silver product . . .I have found that the lesions go into remission, itching stops, fibro-fog clears . . .remission is a good thing. For more aggressive treatment - cats claw and salt/C protocols work but can cause a painful herx reaction - meaning you will feel worse before you feel better - not to mention that a strong herx can cause eruptions all over . . .so proceed carefully.

26. Do a whole body detox - you begin with a colon cleanser, then liver, then lymphatic system then back to the colon cleanse.. Do it again within the next sixty to ninety days.

27. Boost immune system /fight fatigue products designed to boost/support NK cells (Natural Killer cells)

28. Peroxide - cheap but very thorough antibacterial cleaner

29. Food Grade Peroxide . . .can be diluted with distilled water - more economical and purer form of Peroxide. In addition, there are some protocols that use this - I personally have not as it seems to me that this could be very dangerous.

30. Yogurt - makes a great poultice - removes biofilm which encourages the lesions to heal.

31. 1/4 teaspoon baking soda dissovled in 16oz of distilled water - 2x a day will get your body's PH in line.

32. Anything with essential fatty acids . . .coconut oil, flax oil, hempseed oil, Neem oil, Evening Primrose oil is good too - I use them all cuz switching products keeps the pathogen from building resistance - I use these in and out of my body. . .

33. Same goes for the internal protocols above . . .I switch them around bc they stop working.

34. All moles, tags and papules - get them removed - chances are they will come back - so plan on getting them removed more than once
.
35. Go to the dentist and get all cavities/issues dealt with. Get your teeth sealed.

36. If you have a pet - do not let them dig in the dirt. Supplement their food as well. Worm them regularly.

37. Baths that work: Salt/peroxide (two-three boxes of salt, quart of peroxide) Very drying - but you will not believe what comes out of your pores. Rinse in the shower, use a loofah to remove as much debris as you can, taking care to not damage the skin. Replenish skin oils with evening primrose or coconut oil . . .vaseline works well too. A layer of coconut oil followed by a layer of Olive oil suffocates what critters are still alive after all that

38. Borax/peroxide - same as above. Not as drying - exfoliate and use oils as above.

39. Lemongrass oil - it works, but can burn like hell. I mix it with equal parts of teatree oil, neem oil and use a carrier like Jojoba or any of the Flax, Evening Primrose or coconut oils . . .. experiment with what works for you.

40. Sinuses - normal saline to restore ph. Then Grapefruit Seed Extract on a non-cotton applicator . . .a clean eyeshadow applicator works . . .if they are really bad, I will begin the protocol with an applicator of dilute food grade peroxide (followed by the saline and GSE)

41. Ears - a few drops of peroxide and let it sit . . .sometimes it will crackle telling me there is stuff in there that needs evicted. GSE in the ear canal will restore sinuses - keep them from draining.

42. Neem oil/leaf - Great anti-parasitic - use directly on lesions and biofilm prior to bathing. The first time I did this, I pulled a ton of fiber, slime and other such mess off my arm. The leaf is taken internally, comes in capsule form.

43. Grapefruit Seed Extract works great in shampoo and conditioner. There are some out there that swear by dandruff shampoos - but they don't really get my hair clean. I switch shampoos every few weeks as well.

44. Don't forget about your car. Get your vents cleaned and sanitized, keep it vacuumed. I bomb my van at least once a month . . .more in the summer. I use the sticky roller on the seats, and spray them down with ammonia/distilled water. Wipe your steering wheel and door handles off as well - a good microscrubber sponge works great for this.

Finally - it is my observation that their is some kind of fungus formation that give off the fibers densely embedded and layered under the skin . . .it has hijacked and rerouted the tiny capillaries that feed our skin . . .and has been there for a long time prior to erupting into sores. "Beating it" is going to be a long term project. This is an entire system of infection - it is a bacteria, a fungus, a parasite and a virus . . .it creates it's own slime mold replicates at a rate that is incomprehensible. It has permeated everything . . .from fabric to glass. I have even found them embedded in the bottom of my coffee cup . . .damn! and I really liked that coffee cup too.

I know this is really long . . but I hope it helps. I am praying for you . . .peace.

Comment by Mary Jones on May 26, 2009 at 6:10pm

How about starting with getting as many of them out of you as possible. Get a good Amonia (Ace hardware or indistrial cleaning supplies, not the Dollar Store or Grocery brand), two squirt bottles for the amonia and water, latex gloves (good fitting), a box of Zipploc Baggies, gallon, and (at Costco or grocery) the small square box of Ultra Soft Kleenex; no other tissue will do. Have a squirt bottle with water, moisten the Kleenex and make a loose ball to ROLL over the sores. Do this in a confined space because the content is the same weight as the swine flu, it will remain in the air for several minutes and if a breeze comes by they will catch it & stick to anything it touches. There will be spots in your body that contain "flying" tiny white parasites, I see them go mostly to mirrors; .

Do not use the tissue for long especially on your face because they fill up fast with the worms. Put them in the baggie and spray with amonia. When a bag is full or you can see the worms on the baggie side then seal it and place it in another bag (I put Bleach in the outside bag because sometimes other parasites come out that can get through the first baggie...then they die from the toxic fumes that occur when Bleach and Amonia mix...DO NOT MIX THE TWO WHERE YOU CAN BE EXPOSED TO THE TOXIC CLOUD.

Put the filled baggies into a STRONG garbage bag (Hefty black bag is what I use) and twist then tie off just in case any escape.

STAY AWAY FROM RECYCLED PAPER PRODUCTS! Soft toilet paper, news papers, grocery bags, etc. They use Bleach to sanitize and that does not kill Morgellons.

As I think of other things I will try to BLOG them, if you need to talk to another sufferer then please don't heistate to call me, 253-943-5500.

WE NEED TO START MAKING SOME NOISE TO MAKE OTHERS AWARE!

This disease is not a skin disease, it is systemic. Look at my pictures and find the ones of my x-rays, you will see they are throughout our bodies.

God Bless You (He didn't make the beast so he can't stop it...man has to stop it!)

Love,
Mary

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