Morgellons? Dear God, what ELSE?

Razzle?  You know so much about all this crap -- please -- do you know anything about this?? 

AGain, thank you, Razzle. You have been so much help. I did not read that Morgellons was ever considered to be Lyme, but that when Morgellons is present, frequently Lyme, Bart, or Babs are also present. So I agree w/ you that it could perhaps be another piece of crap that infected ticks carry. It's weird that I would be feeling this over 3 yrs from being infected. Altho, the strange squiggles and wildly spreading veins have been coming on since that time. Maybe this is late stage.

It is overwhelming trying to figure out all this crap related to lyme. People already believe you are a crazed hypochondriac, imagining strange things, trying to get attention.

Thanks again for your thoughts on this. You are always so helpful and I've never yet seen you freak out, like many of us here.....

Morgellons is a systemic disease that has not yet gained widespread acceptance in the medical community, yet it actually exists just as AID/HIV existed 30 years ago before Medical science recognized it. It is similar to scabies, which is a contagious skin disease in which parasites burrow under the skin and lay eggs. These parasites belong to the arachnid family. Symptoms vary from one patient to another. Others, such as skin lesions and a “crawling sensation” in the skin are consistent. Areas of the body where the disease seems to be most severe are on the hands, behind the knees and arms, on the chest and back. Other common physical symptoms are rashes and pain that is similar to fibromyalgia. Severe depression often leading to suicide is all too common. The Morgellons Research Foundation located at Oklahoma State University, has identified 93 symptoms common to Morgellons sufferers. A complete list of these symptoms can be viewed here: http://www.morgellons.org/symptoms.htm along with a complete case definition: http://www.morgellons.org/case_definition.htm
When seeking medical help, Morgellons sufferers are nearly always diagnosed with Delusions of Parasitosis (DOP). Currently, there is no known test for Morgellons disease so patients are always told "it is all in your head" and are prescribed physo-tropic drugs and occasionally antibiotics. Neither provide any relief whatsoever from these horrible symptoms . The patient's family often believe the doctor and withdraw their support. Morgellons patients begin to feel hopeless and continue their descent into severe depression.
Many patients have reported trouble concentrating while constantly experience fatigue. When affected areas are viewed under a microscope, many Morgellons patients have clusters of multi-colored fibers beneath the unbroken skin. These fibers may or may not be visible with the naked eye. The fibers have been tested in several labs. They will not burn until they reach 1,400 degrees Fahrenheit and are covered in some sort of high-density polyurethane. A recent study has found microscopic parasites in some patients. This parasite is known to feed on algae, bacteria and decaying organic materials. They thrive in wet or damp surroundings. Unfortunately, there is no meaningful research being conducted since the Morgellons population, while increasing daily is still statistically insignificant.
The results are inconclusive as to the cause of Morgellons Disease. The Centers for Disease Control refers to it as an unexplained dermopathy and they are currently conducting an investigation at Kaiser Hospital in Oakland, California. Many dermatologists and psychiatrists consider this a psychological disorder, rather than a physical disease. Medical doctors generally treat the condition by prescribing antibiotics, antifungals or herbal supplements. These methods are considered treatments rather than cures, as the symptoms return when discontinued. Colloidal silver has been marketed as an alternative medicine for this condition as well as many others, from fibromyalgia to E. coli. From a medical standpoint, there is no proven effectiveness for this treatment. Until now, that is.

Regardless of official reports, many Morgellons sufferers have found relief when NutraSilver is used. They state that the lesions begin to heal after a week, with the sores dissipating completely within three weeks. The severe cognitive issues generally resolve in about two weeks. The bouts of stinging and biting sensations that plague sufferers are reduced or disappear altogether. The most severe symptoms are debilitating and in many sufferers, their quality of life is reduced. When taken as suggested, these fortunate Morgellons sufferers actually get their lives back; their energy returns, their brain-fog reduces and they begin to feel like themselves again. For more information on NutraSilver, visit the web site at www.nutrasilver.com

Nutra silver did nothing for me - I'm not saying it doesn't work for some, it just didn't work for me. I've been getting treatment for Chronic Lyme and Morgellons for four years now. One thing I can advise, try to stay calm. Don't start saving samples to show doctors - they'll just think your're nuts. There's even a term for it.

Victoria

Post Edited (vicparis) : 7/14/2010 9:54:23 AM (GMT-6)

Danser, I thank you for all the info and am definitely ready to look at your links.  I do fear that the list of symptoms is going to include many of Lyme and Babs.  Caldonia Sun, thank you for the MD Junction -- may take me a abit to get into that, but I will definitely go there THIS week.

Vicparis, I will save your email address -- thanks for including it.  I think I've got a lot to look at before I get to that point. I calmed down a LOT today (had to!) and wonder if I have overreacted -- even tho I still feel it.

I do want to ask you this, Vicparis -- You said to not save samples for Drs. I am assuming you mean the 'fibers' that come out?  I have tried to examine some of my sores and what looks like tunnelling in my ankles and feet carefully and I have not seen anything like any kind of fibers, or anything coming out of anywhere.  Also, I noted that I do not have these issues in the most likely places for Morgellons.

So again, maybe I am overreacting and misdiagnosing (you might too, if you saw my legs, ankles and feet), because I have seen nothing like fibers coming out of anywhere.  And I don't quite understand this part of the phenomenon.  From where do the fibers come? When people talk about pulling them out, from where do they pull them?  Is this something I can try to find on my own, just for myself?

One more thing:  Does the 'crawling' feeling come and go? 

My brother has Morgellons
My two other brothers have lyme or one has lyme and the other has MS
I have lyme unless now it is politically correct to call it fibromylagia
My face is on fire, it has been a very bad day.
My period brings all lyme symptoms to a huge pinnacle,

Skin issues, Morgellon's and Lyme--another tick-born disease?

2009 Morgellons Conference Held in Austin

by Harriet L. Bishop

The Second Annual Morgellon's Disease Medical Conference held Saturday, April 4 drew doctors, researchers and patients from 19 states and Mexico, ranging in age from 4 months to 80 years! The Westoaks Baptist Church at 2900 W. Slaughter Lane in Austin was the venue for this medical conference which announced results of recent research that shed some light on this mysterious illness that affects systems throughout the entire body, often but not necessarily presenting with unhealing skin lesions. Persons affected are generally those who have had contact with soil, such as farmers and gardeners, or those who have had contact with dirty water, as in hurricanes and flooding. Evidence was also presented suggesting that Morgellon's may be another of the tick-borne diseases, as over 40 different bacteria and parasites have been known to be transmissible by the bite of a single tick. Infected deer ticks are widespread throughout North America.


The common plant bacteria Agrobacterium tumefaciens which causes gall disease in plants is implicated because DNA has been found in skin lesions of some patients, but the results remain inconsistent, suggesting that more research is needed. It is believed that this is the first time a plant bacterium has been known to cross from the plant kingdom to animal kingdom to infect human beings.


Featured speakers were experts in the field who had come from both US coasts as well as the heartland to present their findings. The disease appears to be more prevalent in states with seacoasts, such as California, Texas and Florida although cases are found in other states as well.


Lyme disease is believed to be a precursor to or co-infection with Morgellon's disease, as 97% of Morgellon's patients also test positive for Lyme disease. The most effective treatment at this time for this little known illness is to treat for the underlying Lyme disease, a process that may involve taking various antibiotics in combination for a period of years. Body systems are protected from adverse effects of prolonged antibiotic treatment by careful administration of milk thistle (silymarin), several types of specific probiotics, monthly lab work and frequent examination by the medical professional.


The Charles E. Holman Foundation, based in Texas, is committed to public education and research of Morgellon's disease. Principal Investigator Randy Wymore, Ph.D. conducts research at Oklahoma State University Health Science Center. On the Charles E. Holman Foundation website www.thenmo.org more than 20,000 households currently report being affected by Morgellon's disease, which remains a medical mystery. Stay tuned!

I sent you an email with my contact info.

I didn't have fibers or lesions at first - mine started by my itching from my head to my toes - for months. It was hell. I was also dealing (and not being treated at that time for chronic Lyme). Then I started breaking out in lesions. One night I was volunteering at a Woman's center, and I picked up a piece of lint, which I thought was cat hair. This is going to sound crazy, but it seemed to move. I dismissed it - oh I imagined it. Then when more lesions broke out, I noticed weird things poking out.

The fibers usually come out of the lesions - I don't pull at them - it will make you crazy. It's bad enough that you have sores all over your body and can feel "things" moving under your skin. I am being seen by a Morgellons specialist.

Cindy Casey (The Charles E. Holman Foundation) has done so much for those with Morgellons. She also has the disease you can read her diary on the Charles E. Holman Foundation website.

There are a lot of people on the Internet trying to sell things (just like they do with people suffering with chronic Lyme). There's also a lot of misinformation.

Victoria

Post Edited (vicparis) : 8/31/2010 10:56:18 AM (GMT-6)

I definitely think it's Lyme related. The CDC gave the research contract to Kaiser - who have been telling people for years that they're delusional. They're going to have a lot of law suits on their hands if they decide it's actually a disease. That will happen after mainstream doctors recognize chronic lyme. Progress is being made, but it's really slow - we're losing people.

Victoria

As always, thank you everyone for all of this.  And Vi, thanks so much for the emails!

 

I'm thinking I completely overreacted that day-- as most of us do from time to time. I do have lesions all over my legs -- I think they have improved some w/ abx, but not sure, because a few are still sores. They do not always itch and the itch is not severe. I still have creepy crawly feelings in my feet that sometimes go a little ways up my ankles and legs. And I do have strange ridges and burrows in my feet that seem to be coming and going.  Also strange purple and red squiggle marks from ankles, down into feet.

LLMD did not believe my this or the  sores are due to Lyme. I don't know why -- because I never had them until after the tick bite. And they just started out as red spots, only turning into sores this past year.

But I see nothing appearing to be any kind of fibers. My eyesight is not good, but I have studied one sore on my thigh (closest to my eyes) and see nothing weird about it, except that who knows what it is.

Still, this is a thread I am definitely saving. You all have provided so much more info than I found in my 'research'.  (in fact, my 'research' took me to many gross places about worms and nematodes, and supposedly a large percentage of people have worms they don't know about. Nice, huh?)

God bless you all and thank you again for so much information. Surely this is something they can figure out if they try!  Would seem that if it is at all Lyme related, studying some ticks would be in order, not just patients.

Researchers should start dissection ticks by the thousands and publish every single bacteria, protozoa, and parasite they find!  Anyone think they are??

Post Edited (+Lyme) : 9/2/2010 8:58:55 AM (GMT-6)

I just read that Morgellon's is included in the list of co-infections - see "It's All In Your Head - Around the World. In 80 Lyme Patients Stories" (book two) by PJ Langhoff (bottom of page 3). If you haven't read this set of books, I highly recommend them. Out of all the many books I've read, I've found these to be the most personal and meaningful.

I didn't have fibers in the beginning and really seldom see any now. Mostly I itch from head to toe and now have lesions (which I also didn't have in the beginning). I'm not a doctor, but I found that doxepin really helps with the itching although I take only when needed, not daily. The detox bath for Lyme helps as well.

I mainly focus on not thinking about the creepy stuff and just tell myself I have Chronic Lyme - otherwise I'd go nuts. They don't know what causes it, there's very little money for research, so it's going to be very difficult to find "the" cure. Hang in there - maybe it's not really Morgellons and if it is, you'll handle it just like you do the Lyme. Did you know Joni Mitchell had Morgellons?

Many good thoughts being sent your way,

Victoria