Morgellons: Expert Says Awareness and Early Treatment are Paramount (interesting interview)

(NaturalNews) Morgellons is a terrifying disease reaching pandemic status. Yet because the symptoms of the disease are so bizarre, people who have it tend to withdraw and become isolated from society. With mysterious fibers and parasites coming through lesions in their skin, Morgellons sufferers often live in fear. As a result there is no pressure on the medical establishment to become educated about the disease, and most practitioners continue to view it as isolated instances of delusional parasitosis. Because Morgellons affects cognitive functioning and the ability to communicate, its victims are often unable to advocate for themselves, and few are knowledgeable or willing to advocate for them. Trisha Springstead, a former surgical charge nurse and clinical educator who now works as an advocate for patient's rights, has stepped in to fill some of this gap. Both knowledgeable and experienced with Morgellons, Trisha agreed to be interviewed to provide the kind of insight into the disease that can only come from direct experience.

Barbara: Trisha, thank you for doing this interview. It's time for information about this disease to become widely available. Hopefully this is a start. Is incidence of Morgellons confined to the U.S.?

Trisha: Morgellons is everywhere. It's in Australia, England, Germany. The only country where people have not reported cases of Moregllons is Iceland. Dr. Neculai Dulceanu, Head of the Department of Parasitology in Romania just scraped these from the skin of a 75 year old woman there [shows slides of fibers and parasites]. He found Rotifers and Collembola in her skin using a needle aspiration biopsy. As you can see, this shows how the fibers and parasites are intermixed. When you look deep enough into the skin, this is what you find.

No one truly knows how many people have this disease, as many of the persons I have spoken with have not reported to any database. Most people with Morgellons seem to think they are the only ones who have it, so awareness is paramount. It is so important for me to let new patients know they are not alone, and that there are thousands and thousands of people with this disease.

What I have seen is that so very many people are isolating themselves. With increased awareness and validation, I am beginning to get phone calls from isolated people who have only had this disease for a short time, like five months. These people get referred to me by word of mouth and my name is all over the internet. When people with the disease peruse the internet they find my name and email me or call me. This is the best time to get patients, because at this point they just have the crawling and biting sensations. The disease is not yet full blown. Last week I had 30 calls. I have a phone number that is in my lab, and young people in their twenties and thirties are calling. This is because they are internet savvy.

I've set up an internet reporting site where people can report that they suspect they have Morgellons. I send those reports to my Congresswoman Ginny Brown Waite. Congresswoman Waite sent a letter to the head of the CDC in May of 2007. Now there is a new head at the CDC and we are back and square one tying to get them to understand what is going on.

Barbara: Tell me some numbers so we can get a feel for the scope of the disease as it is now.

Trisha: The Morgellons Research Foundation has over 13,561 reported families. Not persons, but families. Oklahoma State University has over 20,000 families registered. About 600 people have reported their disease to me, and some have reported to the CDC. My source at CDC told me that this is the most reported disease entity since the reports of HIV/AIDS. And yet so many people have not reported out of fear. The CDC wants to keep it quiet because they are afraid of mass hysteria and mass pandemonium.

There is a huge concern among many sufferers that they are going to be rounded up and put in a camp like lepers, so they don't report.

My husband is an orthopedic surgeon. He has seen six Morgellons partients come into his office, in a very small town, Brookville. These people just happened to come to him for their joint problems, and I have taught him what to look for to diagnose Morgellons. Barbara, if he has seen six right here, it means there is a huge epidemic. And since it is world wide, it is a pandemic.

The sufferers are frenzied, and scared. I can tell you with utmost certainty, at this point in the syndrome there is not a state large enough to hold all these sufferers. Look at the numbers from Oklahoma State University. The people with this disease are so secretive and opaque that this 20,000 is just the tip of the iceberg in my estimation.

I have a teleconference call every Tuesday evening with nurses from Florida to Alaska who are working with Morgellons sufferers. Last evening we went from 9 pm to 12:30 in the morning. I spoke to them regarding advocacy and how to help raise awareness. If you are interested I will see if they wouldn't mind getting you in on the next phone call. It is the nurses that are the ones who are giving out information and trying to help others and teach the doctors about this emerging pandemic.

Trisha: The jury is out on that as far as I am concerned. Many of the nurses caring for these people in hiding do not have the disease. I believe some can be contagious but I truly believe that would be the exception and not the rule. Do I believe that some were exposed to something else at the same time they contracted this...absolutely. I interviewed the captain of a boat on Monday and I spent five hours in their home. They were the most kind and decent people. The husband has the disease, but the wife and children do not. I hugged them all and did a very in depth assessment. Dr. Randy Wymore does not have the disease, and all the doctors I work with except two of them do not have the disease. Hundreds of people I have spoken with have one or two family members that have the disease, and the rest do not.

Trisha: Since doctors are so unresponsive to these people, they have gone to the internet. There are boards all over where people talk about this disease. There are many videos on YouTube. They are giving each other advice and there are no medical professionals there to tell them whoa...hold on...please don't bathe in bleach, ammonia or toxic chemicals. Hold up on the dangerous advice. People who listen to this type of advice are going to have to make a decision in a few years about what type of lung cancer treatment they want. Or they will be looking for a liver transplant, because they have poisoned themselves. People with Morgellons become very desperate and understandably so, but treating themselves with chemicals they don't understand is so dangerous. Some take de-wormers and Ivermectin or Albendazole for the weight of a horse because they don't know how to calculate kilograms of body weight, and they get the stuff from a vet or a feed store.

Trisha: No one knows for certain how it is being transmitted. GMOs certainly have not been ruled out. Actually, nothing has been ruled out. I keep going back to water, soil, mold and pesticides. Water, soil, mold and pesticides, but I haven't as yet been able to get beyond that to a true understanding. I personally believe that it is man's misuse of the earth with Frankenscience, GMOs, and thinking they can rearrange natural ecosystems of the earth that has created this mess. I believe the disease is also vector borne in many cases. Some of the people I have spoken with distinctly remember a bite, then a red, raised area on the skin. Then it became a rash, ulcers and full blown lesions all over their bodies. Then the bugs. The bugs are the progression of Morgellons. No doubt about it. The sicker the patients become, the more the parasites build up in the body, the deeper the brain fog, and then they begin purging out bugs.

Vitaly Citovsky at Stonybrook in New York studied the fibers of 10 patients and said they had Agrobacterium Tumafaciens in their bodies (the bacterium that causes crown gall disease in plants), but what amazed him the most was that he found a biofilm on the skins of these people. It is almost like a pseudo skin. We have to penetrate that biofilm and draw this stuff out of the body or these people will never get better. If you don't, it will stay in the skin and get worse.

Dr. Kalani said the fibers from Morgellons patients were fungal. Because the body becomes like soil, fungus is attracted. The fibers are coated with the Agobacterium, which is a pathogenic fungus also known as Agent Green. Whether it is getting in the lungs, being ingested, or is vector borne or transmitted sweat to sweat is the big question.

I took slides to my friend who is an entomologist and we found fungal hyphae, alternarium, and pathogenic funguses on the slides. These are not things that grow in humans. They are organisms that grow in plants. So the human bodies of these sufferers are becoming like soil and that does that attract? Fungus, mold and parasites.

The bodies of people with Morgellons become very acidic and so we are working with pH buffers. Johns Hopkins and even Harvard have proven that many chronic diseases, especially cancer, cannot survive in a perfectly alkaline body. So, just as we raise soil alkalinity to make it more hospitable to plant life, we must alkalinize the body to fight these pathogens. If you look at my website, there is an alkaline chart and an 80% alkaline, 20% acidic diet is on there. But if you can't do it with diet, you can buffer your pH safely. There are websites that have great pH buffers and teach sufferers how to check their urine twice a day. If they are too acidic, they can take two buffers and not the whole bottle, and check their urine again in the evening.

We have so many people who worked at the Aberdeen Proving grounds (site of munitions testing in Maryland) that now have Morgellons. They were truckers for a multimillion dollar company called Horvath. I called the owner of Horvath and told her, "Do you not understand that you have truckers who are very sick because they were exposed to soil contaminants at Aberdeen?" This woman, Sheila Horvath, said, "[S]peak to my lawyer". No one wants to go up against this company in Maryland because they have power and money. The people with the disease and I want to know what was in that soil.

There are Morgellons sufferers in the Poconos and I speak with them when I can. They are having a hard time getting lost wages and disability, and have been called delusional. Barbara, they are the salt of the earth, just good, kind people. They are not delusional. I am beginning to think the doctors who label them only say "delusional" because they don't want to look at this.

Then, as you know, there are doctors with this disease. Dr. James Matthews in Maryland almost lost his license because he was trying to help people. I saw where you commented on Dr. Beverly Drottar in your earlier article. They are the tip of the iceberg. How many biologists have this disease? I know that nurses are the number one reported sufferers, and that teachers are number two. Is it because they are reporting their disease and not hiding? That is a question I have been asking in this political quagmire, but I have no answers.

I just spoke with a woman in Tampa whose husband has had Morgellons for three years. She has a drawer full of anti-psychotic prescriptions. Their home in Grand Cayman was flooded. When they went back to it two months after the storm, he contracted Morgellons. She told me you could smell the mold from the street. Now he is a full blown case because they searched for three years to get help before they finally found Dr. Susan Kolb in Atlanta. Now he has lesions all over his legs, moving into his abdomen with bugs coming out of his body. I got him in to see Dr. Cheryl Reed in Tampa. I just spoke to her and she said he is a mess. She is getting labs to determine his liver enzymes, and is doing other studies. The jury is still out on him.

Fusarium Osysporum is a pathogenic fungus that we have seen in skin scrapings from patients. This is being sprayed on crops in the war on drugs. I have guys coming back from Afganistan with the disease. What is the biggest crop there? Opium.

Another reason why so many of us are in hiding: Review of the Model State Emergency Health Powers Act

MSEHP would grant emergency powers to the state governors and public health authorities during a declared "state of public health emergency." A "public health emergency" is

an occurrence or imminent threat of an illness or health condition, caused by bioterrism, epidemic or pandemic disease, or novel and highly fatal infectious agent or biological toxin, that poses a substantial risk of a significant number of human fatalities or incidents of permanent or long-term disability. Such illness or health condition includes, but is not limited to, an illness or health condition resulting from a national disaster.

(MSEHP Section 104(l))

MSEHP is designed to facilitate the early detection of a health emergency. It requires that comprehensive plans be prepared in advance which would provide a coordinated response to the health emergency.

In the event of a declared public health emergency, MSEHP grants the governor extraordinary powers. These powers include the collection of data and records, the control of property, the management of persons, and access to communications. These powers include such things as forced vaccination and treatment (Section 504), the tracking of individuals (Section 202), access to patient records (Section 506), and the prohibition of firearms (Section 402(c)). The act requires judicial review for some actions. For example, for mandatory quarantine to be instigated, a written court order must authorize the action, unless delay would pose an immediate threat to the public.

Trust me, Morgellons fits the bill for this kind of measure, honestly, it is a pandemic, it will wreck your life, some are dying, others take their own lives. You think your neighbor is going to bring up such a horrible sickness in idle conversation, no way, mind don't know, and I might be your next door neighbor, or sitting next to you at work, you never know. We are basically underground, I've been trying to raise awareness for your saftey, you are in danger, all of you are.

The reaction of the medical establishment to Morgellons seems similar to its reaction to chronic fatigue syndrome: we do not know what it is, so it cannot exist.

medicine is a scientific discipline. In order to have a "disease" you need to have a deviation or interruption of the normal function or structure of the body that has characteristic symptoms and signs.

In other words measurable data to show the "malfunction" needs to be present. Also the malfunction has to be related to the findings of the causative agent.

Chronic fatigue may in fact exist. But the causative agents that can be replicated in blinded studies don't exist. Anecdotal evidence is one thing but the science has to back it up.

An example is if you have a patient that drinks water and beer, whiskey and water, tequila and water, scotch and water and all patients get drunk... it must be the water causing it. Unless you do the studies to have patients drink water alone and with other compounds you'll never understand that the alcohol in the fluids causes the drunkenness.

A lot of feel good, politically correct stuff is creeping into medicine, so don't worry. Chronic Fatigue will get to be a disease that qualifies for SSI disability just like ADHD, alcoholism, heroin addiction and chronic back pain.

Thanks for the post. You are brave indeed.

I have a sister who suffers so. She is one of the most brilliant minds you could ever meet, for a year wshe was hardly able to remember if she had a conversation with you and what was said. She has finally found doctors that are willing to tell her she isn’t delusional. Not sure where the ‘delusional’ diagnosis started out, but the doctor(s) who first resorted to it deserve to burn. The pain that ‘go away’ diagnoses has caused is unimaginable. Even a close family friend dermatologist gave that diagnosis as he blew my sister off in her quest for help.

Real work has been proceeding on answering the questions about how, why and where the disease comes from. Every sufferer I have heard tell of had a very complicated medical history. Going to take a lot of work to unravel the physiology and come up with treatments and cures. The mix of symptoms probably means there will be no ‘one solution’ for all sufferers. The answers WILL come though.

Bless you!

Just another thought to consider, pearl millet is known to be the only alkaline cereal grain. Some people insist that it is helpful for dietary reasons. It is somewhat difficult to find in the U.S. Most of the product labelled “millet” in grocery and specialty stores is actually proso milllet - completely unrelated to pearl millet Disclosure - I conduct research with the grain but am not a producer. Freepmail me if you want to discuss this further.

Just as another thought - pearl millet that is available is not GMO. I had never heard of the link between Agrobacterium tumefaciens and Morgellens before until I read this article. The GMO link was the first thought that crossed by mind. Agrobacterium genes are widely used in transformation events. Only after a google search I see that others have suggested the same connection.

Chronic Fatigue Syndrome is problematic because it is diagnosed by exclusion, but that does not mean that it does not reflect a genuine disease process. Numerous studies have identified biochemical markers for CFS in the research setting. So far though, tests for these markers have not been developed for clinical use.

Unfortunately, until a traditional disease entity is officially established and can be tested for in the clinical setting, patient complaints and symptoms suggestive of CFS are mostly disparaged and ignored. This is so even when closer attention to the nature of those complaints and more diagnostic effort could result in relief for the patient — and from well-recognized diseases at that.

Currently, diagnostic skills are taught and applied in a formulaic fashion. Just as the kitchen help in a McDonald’s cannot depart from the menu items, too many doctors are a loss when patients do not present symptoms that fit accustomed diagnostic patterns. Atypical cases and protean disorders are often missed.

Today, CFS is just an easy way to put a troublesome category of patients into a category of permanent illness that calls for little further effort at diagnosis and treatment. Objectively though, celiac disease and atypical shingles are a good fit for many cases of CFS. I know of no medical authority though that even suggests that they be considered and excluded when CFS is suspected.

Yes, AgroBacterium has been proven to be able to make the cross kingdom jump between plant and animal, something they originally said was impossible, but AgroBacterium is but one thing they are using in GMO, I have done a lot of research in this are and could lay out a very good case for a particular “item” that lies at the cause.

Like Trisha said in the article, and I have been saying for two years, something “got in it” and made our skin seem like soil or a rotting log to insects, and it has nothing to do with a weak immune system.

Read this article
http://abcnews.go.com/primetime/story?id=2283503&page=1

Billy Koch, a former Major League baseball player who was one of a handful of pitchers who could throw a ball at more than 100 mph was at the top of his game, then two years later was out of baseball. Why? Morgellons, its way more than a skin disease. And his entire family came down with it all at once. Not uncommon for family’s all the across the country I’m sorry to say.

My problem is hypothyroidism and adrenal disease.

Medical professionals are woefully ignorant on both of these ailments. Sometimes I think I know more than they do, which is scary, and due to their ignorance it would behoove anyone who suffers from these diseases to really educate themselves and not just take the doctor’s word for it.

Not only should people educate themselves, but they also need to educate friends and family so they can speak up for the patient when the patient is unable to.

Adrenal crisis can be reversed by a simple shot. If someone is in adrenal crisis, their organs start to shut down. If the person is unconscious, they need an advocate who can demand proper treatment. A medic-alert bracelet won’t always cut it.

No.

Just freezing to death, mind numbing fatigue, weight gain and pain everywhere. Everything is pretty much fixed except for the fatigue part & the weight gain.

I’m getting better but I’ll probably never be 100%.

I got more useful advice from forums than I ever did from a doctor. If it weren’t for the forums, I probably wouldn’t be feeling better now.

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