Discovery – Many start of thinking what they have is lice, scabies, bird mites, or bed bugs and after a few times poisoning themselves with conventional treatments they begin to realize that there is something more hideous at work in their lives. This phase takes some time, maybe months and months before it dawns on them that what they have defies any conventional medical description. What is happening to them is not normal and they realize it. However, many are convinced that they have bird mites or whatever, confused by the conventional (and outdated) definitions of Morgellons. They say to themselves, I don’t have lesions or fibers so I can’t have Morgellons? So they spend their time chasing rabbits not knowing that as many with Morgellons don’t have lesions as do, and that the fibers can often only be seen with a scope. Or they might say, Morgellons is only in California, Texas, or Florida. All of these assumptions are wrong, but they continue to appear in new articles that say nothing new but repeat old outdated information further confusing the public. Strangely, some people itch terribly while others feel the massive crawling and don’t really itch at all. I think those that itch are more apt to have lesions as some kind of histamine or immune system attack is raging within them.

Horror – This is probably the most dangerous and heart wrenching phase of Morgellons. The moment they realize they have this horrible affliction called Morgellons is extremely frightening. I still remember the exact moment that I realized what I had was truly Morgellons. I sat in my car outside a Radio Shack having just purchased a pocket scope, said a prayer, and then looked at my arms only to see red and blue fibers everywhere. And they were deep under my skin. People can spend years in the "Horror" phase and some never make it out. This is the period where very scary thoughts run through a persons mind such as "Am I being eaten alive by worms", "Will I go blind?", "Surely I am going to die from this" and so on. While in this phase a person is likely to try all kinds of risky and downright dangerous self treatments. I know I did more than my share. Finally, during this period a person can rip their family apart and alienate themselves from all of of their loved ones. They are terrified and alone, this is one disease that you suffer alone, it’s almost defined by loneliness.

Searching for the Cause – This is the period when a person goes out and starts researching and hypothesizing on what the cause might be. Probably at one point or another a person will entertain all kinds of ideas that later they will look back on and consider ridiculous. However, at least the person is now taking action and while they might still be "horrified" they are determined to find a cause and by that they think a cure, if not from doctors then on their own. This is when many become addicted to the forums and begin reading all kinds of technical medical literature and so forth, much of it scary. While they might not be frozen by horror they are still a long way from being on the right path. This is also another phase from which many do not escape.

Rejection – I think this part is the key to either living with Morgellons or "free of" Morgellons. When a person rejects the horror and stops incessantly researching the cause and begins to reject thoughts that come into their mind about parasites and all the terrible things Morgellons could be they are on the path towards healing. I was there, believe me, and was still doing so when I started this blog. The moment they say to themselves "This is not real" (even though they know it is) they begin to feel better. Of course, I am not saying Morgellons is all in ones mind, but the mind is a powerful thing. There was a point in my life when I was crawling like mad and said to myself, it’s not worms, it can’t be. I reasoned this because of all the dewormers I had taken, that the large geographic area affected made it impractical, and it simply didn’t add up. No, something else was at work. This person, if they make it this far begins to live their life again even though they can’t explain what is happening inside them. But they know enough to know better than to fall for all of the theories. Sure, we all entertain them for a bit even now, but reason calls us back because in our hearts we know they aren’t true. So, we do the only thing we can do, we go about providing our body with the things it needs, the common, everyday, safe things that we know we have neglected and in fact just cannot get any more in today’s world from our diet. These include supplements, sunshine, laughter, exercise, God, and relationships too. And as I have been trying to get across, we take breaks, sometimes for weeks, and take nothing at all but good food.

You’re experience might be different, you might disagree with my assessment above, feel free to voice your opinion. You notice I didn’t mention acceptance, I never considered that as an option, maybe the “Rejection” category could be called that, but it never felt like that for me, I was never going to accept Morgellons.

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Comments on: "An Over Simplified View of Morgellons" (30)

  1. zara cybele said:

    Eloquently expressed.
    I went through all those phases pretty much exactly.

    I haven’t rejected the forums completely though—but use them in a different way than I did initially. They are a point of contact and even friendship now.

    Morgellons is no longer like a college course I must pass to graduate. I don’t need to study it from every angle, become an amateur biologist or run out to buy every product that has helped someone along the way.

    I choose to look at it as simply another dis-ease that will be recovered from. It’s not so much that I reject it—just that I am listening more to the health lying intact just underneath the sickness. It is to this health that I’ve turned my attention to—addressing it everyday, nurturing it with conscious choices, actions that support the body, and responsibility for and to my “Self.”

    There is always a spiritual gift buried within the difficulties of our lives. Having Morgellons is like taking a huge fall. We lay there on the asphalt thinking, My God, I’ll never walk again! When no one comes to rescue us, we access the damage…can I wiggle my toes… Let’s see if I can sit up—until the understanding dawns that we can still walk.

    It is how one chooses to go through the experience, that teaches us so much about ourselves. That is where the alchemist will find the gold.

    • Mr. Common Sense said:

      zara, I’m glad you can relate, there were times when I literally woke up, was crawling from head to toe, would put on some Guns and Roses or some heavy rock from my ancient past and just rock out, come hell or high water I was going to crank up my strenght, and jamming out has a way of (pardon my language) pissing me off just enough to go on another day. There were real moments that changed me, one of them was hearing this song for the first time.

      It’s my Life and it’s now or never I just want to live while I’m alive.

      I thought, that’s it, I’m done with this crap, I’ve got one life, I’m not going to live it as some kind of Morgellons sufferer whether I have it or not. I’m going to get up, start moving and when I get down, sure, I’ll breakdown, cry, maybe freak a little, but that’s it, it’s time to stand up march on. It was when I decided I was going to die on my feet that I started to live.

      That’s why my theme song on my all articles page is there, you don’t know how many times I listened to that song when I felt absolutely terrible.

      I’ve been attending our mens Bible study early in the morning before work and that is where my focus is going to be, the Lord broke me of my worst fear, sickness, there’s very little that is frightening to me regarding health if anything at all now.

    • does anyone accept the disagnosis of Delusional Parasitosis? I think the Morgellons disease has been created and is a way for people sufferung wit these morgellons symptoms to band together inorder to aviod the stigma of being labeled as crazy or delusional. Maybe they are ashamed or embarrased. Any rational person who is suffering would logically look for medical help to stop the pain. And there is real pain, physical and mental. Thde problem is that DP is a psychosis and while in a state of psychosis people are not rational. They are very obstinate and hard headed. If a person sufferring from morgellos wants help they would see the psycharist and take the medications that make this go away. For anyone who is suffering from this disease, please consider psycharitric help. The stigma associatd with this is not what you imagine. Your family and true friends will love and respect you no matter what.

      • Jay,

        The problem is most of us have been to many doctors without getting help. Anti Depresants will not cure this disease. Though this disease tends to drive us around the bend some days we are not delusional. We have banded together of necessity. We have yet to find any one prescription medication that makes this go away. Are you a doctor, just wondered. As far as seeing a psychiatrist I read of a women who after being denied medical help went to the pysichiatrist her MD recomended who finally took the time and did an actual examination and with a microscope found eveidence of parisites!

        • I am not a dr but I am educated. At this time my wife is experiencing symptoms that are exactly like the symptoms people who claim to have morgellons are experiencing. These symptoms are also exactly the same as described as the diagnosis of DP. She swears she has parasites living in her skin. She does have lesions and she constantly picks at them trying to get whatever she thingks is in there out. At first she thought she had bird mites, then it was scabies now she not sure what it is but its still there. She has seen many dr’s and had a skin byopsy. No parasites were found. She gets real mad when anyone tells her they cant see the bigs that she see’s. She also has a diagnosis of Bipolar disorder, depression, and is a recovering alcoholic. Everything points to DP. I wonder what percentage of people who are suffering from morgellons have a diagnosis or history of a mental disorder? She has been on anitidepressants and other related meds for a long time. This just started about weeks ago after she was doing alot of obsessive gardening gardening. She found little bugs on the plants, in the ground and soil, on the trees, and so on. She started doing research about the bugs. Then all of a sudden she was infested. The whole house was infested. But yet me and my 2 kids had absolutely no symptoms at all. Makes you wonder whats going on? So she starts to wash her clothes over and over again. Wants to have the house fumigated. me and the kids had to stay inour camper because she would be up all night washing and picking and spraying chemicals on her body. She had to go to a hotel because she couldnt stay in the house that she thought was infested. The bugs followed her there too? And in both cars? Again me and the kids are perfectly fine! This is a psychosis related to the manic phase of her Bipolar disorder or possibly a severe depressed state. Se has left the home to stay with her parents in a effort to get away from the infestation. And of course their house which is 400 miles away is also infested. Some Dr’s give her mite cream. i wish they wouldnt! That just validates her perception of the infestation making it harder to deal with. Most professionals think that morgellons is a manifestation of Delusions of Parasitosis or DP. I hope that people who are sufering with what they think is morgellons give anti psychotic meds like seroquel or olanzipine or respiridol a try. I think they may find these drugs help clear up this problem. It is vital though that the morgellons patient is not told that the anti psychotic will kill the parasites. Again this will just reinforce the delusion.

          • And most of the web sites that discuss morgellons are questionable and full of ads trying to sell remedies to cure or relieve morgellons symptons. Sounds like people trying to take advantage of people who may not be of sound mind. Quack Dr’s claim to be able to help morgellons patients. Thsi seems very questionable to me

          • zara cybele said:

            Jay, I doubt your wife is delusional in this. She may have a history of bipolar behavior, but that would be a separate issue from what she is going through now. People with Morgellons seem to test positive for agrobacterium. This bacteria is found in the soil. Sounds like she got it in the garden. If she is acting obsessive with cleaning, it is understandable. She is trying to take action against something she perceives in her environment. This would be a normal response to self-preservation. We in the Morgellons community were all there and did the same thing.

            Consider yourself lucky you have not caught this. Morgellons has a contagion factor and no one seems to know why some get it while others don’t. It could be that your wife’s particular immune system has been laid bare, due to exposure to whatever this toxin/bacteria/fungus is while yours may be fine.

            Let me draw a snapshot for you of what she is feeling, so you can put yourself in her place. Picture a log in the woods. It is resting on damp, rich soil. Lift the log and you’ll see all manner of bugs scurry for cover when they are exposed to light. If you hadn’t lifted the log though, those bugs would most likely be quiet, moving slowly, eating at leisure, stirring intermittently. Eventually they will reduce the log to compost. Imagine what those organisms must feel like hidden away in the dark. The movement more like a constant shimmering. Then imagine that your entire body is that log and that those bugs are on you. Feel those creatures, so tiny that the eye can’t see them—in your eyelids, your eyebrows, your nose, your ears, you sexual parts. Feel them them react when you go outdoors into the freezing cold and they register the change of environment by their movement.

            There are over 15,000 people currently registered as having Morgellons. How many more do you think are out there who haven’t figured out that Morgellons is what they are sick with? How many more have not registered because they are afraid the information if they supply it will be used to profile them? I can’t even imagine the number. My point being, is that your wife is not alone. Doesn’t it strike you as odd that over 15,000 people would all be hysterical with the same delusion?

            Jay, I fear your attitude will only further alienate you from your wife. If that is what you want, then by all means, continue to regurgitate what you’ve read about delusional parasitosis to her. It has nothing to do with her reality though and will only serve to cement a wedge of isolation between the two of you. This is very real indeed. The way you can help her most is with your love and acceptance. To understand that you do not understand. Come to terms with the fact that you have no idea what this is and not latch onto some paper you’ve read that delivers a nice packaged label you can hang on your wife so that you can maintain your secure little bubble of comfort.

            If you want to help her, get her to read some of the better sites on the web. She can start with Mr. Common Sense’s articles, right here. Please caution her against using chemicals on her body, there are many alternate ways of dealing with this that are non-toxic. She doesn’t need organ damage on top of Morgellons. Let her know there is plenty of support on the web if she needs to communicate with others. Also, understand that manic behavior can be part of this. I often feel like running when these creatures start moving.

          • sister to Common Sense said:

            Jay,
            With all due respect, I have been around many of these “DP” patients. I also do not have this illness myself. I have seen the lesions on these people, I have seen the brain fog that they suffer from, I have pulled things out of people that should never come out of a human body. I have spent countless hours and have many who live in my region in Florida. They have never had a delusion in their lives, nor have they been Mentally Ill.
            I have also seen psychiatrists turn on these patients and (or) dump dummy drugs into them which further decreases their self esteem and spirals them deeper into a depression. I have seen not only Psych doctors dismiss them as crazy from across the room but ID, GP’s, Derms, you name it.
            I don’t know your wife, but the people I have seen are NOT delusional. My husband is an MD and has met many of these sufferers and knows that the majority of these patients I have seen are not delusional. When you see photos of the scarring (not self induced) and the actual degradation of the skin on others maybe you will believe that this exists. I have just taken photos of a woman who has lost her hair, has lesions all over her head and face and scars. This is a good woman, who is the wife of a very high profile member of the community here. She was never Mentally Ill a day in her life. I will post them here when I have a moment.
            IMHO people who suffer from this malady carry it with them. One person in a household can have this and no one else experiences any symptoms.
            You say she has underlying psychiatric problems and recommend a psychiatrist, seroquel, olanzipine or respiradol (which is for Schizophrenia) and other psych drugs….have you read up on the side effects of those drugs.
            She may or may not have this, I don’t know because I do not know her but I can tell you this is very real, very frightening and to be honest with you I am furious with the majority of the Medical Community for being so dismissive of a real affliction.
            Why is it that in Florida a landmark case was won for a woman who worked all her life, two jobs and was a local celebrity when he saw the photos and her physically in court.
            This woman had 2 Doctors give her the diagnosis of Morgellons. So if you believe this is all DP…then I must assume the lawyer, judge, doctors and myself are all feeding into Delusions.
            Sorry Guy…I don’t think so.
            Again, this is in no way wanting to slam you because I do not know you, but I do know this disease and have seen the outward signs as well as the inward manifestations of this syndrome.
            Sister to Common Sense

  2. zara cybele said:

    I wish I had a theme song (note to self: work on it).

    When the crawlies start working me over, I get very agitated and need to do something physical. Totally relate to the need for “rocking-out.”

    Usually, I’ll jump on my bike and start pedaling in an effort to “outrun” them. It helps.

    • Zara, So my wife contracted this bacteria from the soil? This sounds like a plausable explanation but there are way more than 15,000 people in the country who dig in the soil. Me being one of them my kids too. What about all the landscapers out there like my brother inlaw and my mother & father inlaw who are avid gardeners? 15,000 people is a relatively small number compared to how man people live in the country. So it’s not odd that 15,00 people would be hysterical with the same delusion. Whats odd is that Morgellons and DP have virtually the same symptoms. Why is that. A person with DP is characerized as being completely sane aside from the delusion of bugs. It is typical for people afflicted with a disease to have the same symptoms. Most people who have the flu have a fever, if you eat something rancid most people vomit, if you drink too much alcohol most people will get sick and vomit. So if people want to call DP Morgellons disease regardless of the name the would have the same symptoms. At this time there is no real reputable web site that talks about morgellons as a real undeniable human afflication. The CDC doesn’t recognize it. You maen to tell me that every educated Dr. out there is delusional and are just ignoring a real affliction? That doesn’t make sense. My wife hasn’t yet fully insisted that she has morgellons disease but she has mentioned it and I feel that that is next to come. I’m just affraid that if this morgellons is really just a manifestation of an underlying mental disorder, getting obsessed with a morgellons diagnosis may not be such a great thing.

      • Mr. Common Sense said:

        Jay, on my blog on the right are categories, click the DOP category. Also, read my very first article, if you read that your eyes will be opened, trust me on this.

        https://morgellonspgpr.wordpress.com/2009/03/11/does-this-identification-mean-anything-i-do-not-know/

        the DOP articles are here

        https://morgellonspgpr.wordpress.com/category/dop/

        The truth is DOP is an extremely rare diagnosis, I mean very, very rare.

        I run a well known high tech company, I assure you I am not delusional. Jay, I have a lot of experience with this disease, let me just tell you it is real, is it bugs? I do not know, could be just nerve sensations, we just don’t know.

        Your wife can get better, see my “all articles” page, read the one on fear, anxiety and you will see what your wife is going through. It is horrifying at first. Imagine you sitting there reading this blog and then out of the corner of your eye you see a wolf spider crawl onto your shoulder up from your back. You’d jump out of your skin because we have an real fear of bugs. Now, to the Morgellons sufferer what they feel is millions of bugs crawling around under the skin, is it bugs? We don’t know, but it feels like it and it’s not imagined.

        I’d be happy to speak to you on the phone, or your wife, or both if you like. The thing is she needs you Jay, you can help her greatly. I have tried to create a place here where people can get over the terrible fear that comes with this disease and get back to thier lives. This condition has wrecked many a families, don’t let that happen to you.

        Finally, on your comment about doctors, the truth is they know so very little Jay, I was pretty sick and kept getting more and more antibiotics, but I stopped all that nonsense and went the natural healthy route and am now healthier than I was pre-morgellons.

        If you’re wife is considering she has Morgellons I think I can do alot to eliminate alot of her fear, and offer you both advice that could make this so much easier for you both, not medical advice, just on how to deal with this so she isn’t consumed by it.

        In reality there are 100’s of thousands of people, probably more in the US dealing with this, google “Skin crawling” and so on and you will see it on forums everywhere, and not morgellons forums, just people struggling and they haven’t a clue what they have. Getting over the fear is 70% of the battle, at least it was for me.

        Again, read that first blog post, it can be very enlightening.

        Wish you and your wife the best, and God bless you both, I’m hear if you need me

        • Thany you for your support. She has an appointment with a very good dermatologist on Tuesday coming up. The Dr. is a family friend and I feel will be sympathetic toward her situation. After her derm appt. if things are still real bad and no solution is discovered I may take you up on the phone call. It would be greatly appreciated and I’m sure she would find your empathy and knowledge greatly appreciated. Do you want to give me your number or would you rather call her? Thanks

        • To answer your question. Although she has had emotional problems in the past, she has never complained of bugs under her skin or any type of crawling sensations until about 3 weeks ago. This whole thing is new. My thinking is that her existing depression and Bipolar disorder is at the root of this whole thing. But I may be wrong. Thanks again.

        • So I spoke to my father in-law and he said that my wife thinks she has morgellons disease. She still thinks there are bugs in her body and in her environment. I told him about you and that you were willing to talk with her on the phone. We would like that to happen. Please give me a call at ###-###-####. Thats my cell. We can work something out as far as talking with her. I really appreciate it. we are at the end of the road as far as what to do to help her at this time. Thank you so much. I’ll be looking forward to talking with you.

      • sister to Common Sense said:

        Dear Jay,
        I was in the thick of HIV, many MD’s said it didn’t exist. The patients were all gay, it was not real to them and they did not want to see this, It took years for this “delusion” to come to light.
        I worked in LA and Doctors called them crazy. Doctors who believed them were considered charlatians and snake oil salesmen.
        Nurses and MD’s who I worked with refused to see them.The only ones who suffered were the patients and those of us who saw it as real.
        Paris and the US were fighting over a name. Get the movie “And the Band Played on” Many people called us, that believed in the illness Quacks.
        There are 15,000 on one site, I certainly wish you could read all my emails and listen to the horrors of the phone calls I recieve.
        There are another 20,000 on another site reporting.
        I have over 40,000 families reporting to me on my little website. Add the numbers, this is a pandemic and they can not all be delusional.
        Fear can make this worse, these people do get obsessed but they need validation. I have said it before “Validation is Key in getting well.”f
        I would gladly give you phone numbers of people who have this and you can see they are not delusional.
        Some have had this for up to 15 years or more.
        The band is playing on and there is not a day I don’t recieve an email from a suffer or a family member who was in denial and realized that something was horribly wrong.
        If you want to call it hypertoxity syndrome then do so. Get her tested for heavy metals and you will see she has elevated heavy metals.
        Many of my sufferers did not dig in dirt, they were in the water, homes and in hurricaines.
        There are many educated Doctors out there that have had this and many are well.
        There are many educated doctors treating this disease.
        It is sad that there are not more.
        If you want a good doctor then email me through Mr Common Sense.
        Your wife needs to be followed up by literate Doctors. This is the next big one and I truly hope you don’t end up eating your words along with her Doctors.
        Sincerely,
        Sister to Common Sense

        • I do appreciate all of you responding. Your thoughts and best wishes have helped. My next question would be, than how the hell did she gets this. Just one day out of the blue? Most illnesses, that aren’t genetic, don’t just appear, do they? The reason I think my wife may have DP is mainly because of her history. 2 failed suicide attempts, alcoholism, depression, bipolar disorder. All of these things point to DP. She is an emotional wreck. maybe some people are suffering from this morgellons disease. It’s just so strange that Morgellons and DP symptoms are exactly ther same. I’m trying to understand this whole thing. I want to be sure it’s not DP before a diagnosis of Morgellons is supported. At this time I just don’t think my wife is suffering from Morgellons. Again she hasn’t come forth yet with this self diagnosis, but she has mentioned it. This just started about 3 weeks ago out of no where. If I am wrong than I am the biggest ignorant Ahole on the planet for not believing my wife. She’ll probably divorce me! This is affecting our whole family right now as any problem like this would. Her parents are dealing with her and this problem right now. The week or 2 she spent here at home completely put all our lives on hold. I had to stay home from work, the house was turned upside down and she acted like she was crazy. I was here and witnessed her walking aorund the house with no clothes on spraying bug killer everwhere, throwing out perfctly good clothes, new clothes. Digging in her skin, matchboxing every little thing she thought was from the bugs or whatever she thought, and still thinks it is, going to hotels, laundry mats because our washer and dryer was no good. The exact same thing is happening at her parents. To the sane person looking in her behavior looks insane.

          • Mr. Common Sense said:

            Here are my thoughts Jay, and remember I’m not a doctor of any kind. I’m just somebody that made it through this mess. What you are explaining seems pretty extreme. I have seen people come down with Morgellons and go way off the deep end, however, you are saying a lot of this kind of stuff was going on long before her bug sensations and fears right? Correct me if I’m wrong.

            Morgellons isn’t really a killer, though people have died from it that is not the norm. I was on a conference call last night with a man who has had this since 1995.

            When you say walking around with no clothes on spraying bug spray in the house that is far more dangerous to her health than Morgellons, in fact, if she has Morgellons this will make her worse and is not great for you either. She needs to eat healthy, use natural non toxic products, and stay far, far away from pesiticides.

            Her immediate need it sounds like to me is to get a grip on the phsychological issues that are going on. If she continues down this path she’s going to have to be committed for her own protection, she would not be the first with Morgellons to have had this happen, if she has Morgellons at all.

            I think you need to speak with a professional on this, but remember, drugging somebody up on mind alternating drugs isn’t that great either. Also remember, they will never consider Morgellons as real.

            I feel for you Jay, you’re in a tough spot. I would be willing to talk to her, if she has Morgellons she’s making all the classic mistakes, she needs to calm down and her current path will destroy her and I’m sure you can see that. Remember, she’s crazy (as we all are) almost by definition to the medical community if she talks to them about bugs in her skin.

            If I spoke to her on the phone here’s what I would say.

            Whether you have Morgellons or not you need to realize that you’re not going to die and probably not infected with bugs, though the sensations you feel are real and it feel like bugs it most likely isn’t. Morgellons will not kill you but you can greatly damage yourself by trying all kinds of dangerous things. The root of Morgellons is NOT bugs, in fact, most of what we feel is not bugs but probably a fungal issue. Find a fellow sufferer (female) that you can call when things get bad but know enough not overtax that person. When the thought of bugs come to mind ignore them, when you feel the crawling tell yourself it’s not bugs, go on a healthy but anti-fungal diet, and seek help if needed.

  3. vicki ward said:

    Thanks for your concise description of the “stages” of dealing with Morgellons. I can very much identify with this journey. I would add a final phase of Transformation. This experience has changed my life, my attitude, my interests, my view of myself and my world, and my appreciation for many others along the way. The spiritual transformation has been real, and my appreciation for the basic things I once took for granted has grown remarkably.

    I do think that this has provided an opportunity to wake up to what we collectively have done to our world and our bodies in terms of pollution and poorly thought through decisions. It also provides opportunities to get involved in the “clean up” and awakening ourselves and others. What do you think?

  4. Sherry Taylor said:

    Well thqt was totally awesome
    Sherry here..hi Mr. CommonSense and community.
    i’m on the road doing this with a flashlight in a tent practically being blown away by the wind visualize me floating over your state or country.
    Message right on..i may have added you come to see more clearly what is important and how spiritual nourishment is like drinking in life itself whether you get it from nature or fellowship with others..whatever it’s all good..especially creativity, Sherry

  5. Wow! Very well said… all of you.

    I have not had to endure the trial of Morgellons, but I have tasted my share of the Refiner’s fire. It occured to me as i read you posts that rather than being the final stage, transformation may be the end result of our trials… so that in the end, they may even be perceived as blessings.

    Thanks Mr. CS for taking a stand for Hope!

    Love Always,

    John

  6. Joe Keleher said:

    Jay,
    I’m glad you’re trying to find answers. This blog is a great place to keep a pulse on all that’s going on in the Morgellons world. Mr. CS has done an excellent job!

    Another online medical resource I really like is pubmed.gov. This powerful database lists articles related to every medical condition you can think of; sadly, it also gives a vision of where the medical world is most willing to invest time and energy (for example, while a search on “erectile disfunction” will give you 15,676 results…a search of “Morgellons Disease” will give you 19…and many of these article simply view Morgellons as D.P.!).

    Keep looking for answers. They’ll come. You are right …there are many claims of Morgellons cures being presented by the “Snake oil” crowd! Take care- Joe

  7. Jay..
    My husband is a non believer as well but we have been the best of friends since 1976, he continues to support me mentally and physically. I have had this horror for almost two years, it came from gardening as well.
    I was suicidal for several months, had my boys not supported me, I would be dead now.
    End of story.

    Keep on keeping on, your wife and Mother of your children are worth it.

    I am better now thanks to MCS and in my case DHS.

    Life is worth living.. people don’t lose their identities in two weeks and suddenly go nuts. Think outside the box please.

    Best to your family.

  8. zara cybele said:

    Jay, one last thing. This link below is to Dr. Strickler talking about the connection to agrobacterium.
    http://video.google.com/videoplay?docid=825732284227064951&hl=en#
    (Mr. CS I hope you are okay with me adding a link—if not just remove it)

    Also, Mr. Common Sense directed you to his first posted article. Make sure you don’t miss this article on that post
    http://www.bodylice.com/report/research/jnyes.pdf
    Best…

  9. zara cybele said:

    Jay, one thing you might want to do is get a hand-held microscope from Radio Shack for $12. Take a look at your skin carefully. Then look at your wife’s. We all seem to have in common, black specks under the skin. I’m not sure how long it takes for them to start that manifestation, but I got my scope about a month and a half from the onset of symptoms and my skin had those specks embedded in them by that point. Pay particular attention to the palms of her hands.

    This would at least be a reality check to see if there were anything different going on in her skin than yours.
    Hope this helps… good luck.

  10. I did several of those things minus the naked and I can assure you that I am rational and sane. I was terrified FOR my family because I did not want to give them what I had. Fear is the biggest motivation and the overall Twi-light Zone-i-ness of this disease is beyond the scope of normal human comprehension.
    I threw out so many things that I still go on endless searches for things we used to own. I am better but still have things bagged and sealed which I cannot bring myself to re open. I will likely end up throwing them out as well as I do not ever want to return to the heart of the nightmare.
    It’s a very isolating and scary place to be and the worst thing that I did was listen to folks who had the same reaction as you have.

    I saw three psychiatrists who put me on Seroquel (hallucinations) Xanax (always had that for intermittent panic attacks) Risperidone (awake for 5 consecutive days and nights)
    Ambien (night wandering) Clonazepam (just plain exhausted) Fluvoxamine Malleate (don’t recall the side effect) Gabapentin and doxycycline. This was in a two and one half month period of my onset.
    Is that what you want for the woman you promised to love honor and cherish til death do you part.
    My sibling thought this was all great and normal (our Dad was an M.D.)
    Needless to say we don’t speak anymore and said sibling still crashes through my life like the affronted one.
    As my sainted Irish Mother used to say… “With friends like that… who needs enemies?”
    Don’t mean to sound harsh… but the tough love types make my skin start to crawl all over again.
    Have some compassion.

    • Hi Lamb,

      I went through the same scenario. I recently threw out an entire closet of clothing. It is difficult to bleach/sanitize winter woolens and have bags sealed around the house. I have a normally caring sister who would not even take the time to read about what we are suffering. No one wants to know so I suffer in silence and have come to a sort of acceptance that I will never be the same. odd though if I had a mainstream disease my sister would read up on how to be supportive. My husband’s mother had Alzheimer’s and he read up on it, but cannot spare the time to read up on Morgellons.

  11. This reminds me of the lengthy debate we had here with PalMD sometime back. Except in this case, Jay is invested personally in this. Jay, it’s quite unfair to first make up your mind that your wife has DOP, then try to explain away all other reasons why she is rational so you can uphold your conclusion that she’s delusional. That’s just not fair, is it? Also what do you or I really know about DOP? It’s a psychiatric diagnosis given to symptoms of an unknown origin. The doctors don’t know the cause or the reason of what’s causing the patients to feel “buggy”, thus they gave it a label to the symptom, NOT THE CAUSE, and named it DOP. Do you see the error in logic here? You don’t know what’s causing ppl to think they have bugs, so you give it a name. It’s called DOP. Now this diagnosis of DOP becomes the truth. But this truth is based on the unknown. It really doesn’t make sense, does it? And again, it’s a psychiatric diagnosis too often made by dermatologists and in this case you, someone who’s not a doctor. When’s the last time you saw a psychiatrist giving a diagnosis for squamous cell carcinoma? Yet we have skin doctors concluding their patients have DOP, without any sort of a psychiatric evaluation just b/c they do not believe their patients. It’s all in the handy book that doctors have on what to do and what to call symptoms when presented with symptoms they can look up.

    But I’m glad you’re at least trying to dig for more information and it’s really great you landed here. Yes, you can go to other forums out there that can provide lots of support for your wife but many here are ppl that have “been there done that” – and I don’t say this as a sneer towards the forums themselves (I’m still on them) but more to all the things we have tried like dousing our homes and bodies with toxic chemicals b/c of desperation. Many here are past that phase and are really focused on kicking this disease with proper diet and exercise with the right supplements and medication.

    The single most important thing you can do for your wife is to believe her. Just b/c you can’t see the bugs (or whatever these really may be), doesn’t mean that they are not real. If your wife comes down with a cold but you are totally okay, do you say “I don’t have it so your cold isn’t real”? Of course not. If you can’t believe her, at least believe this – her suffering is very real and it’s not going to get any better if you reject her and call her delusional. Now is the time she needs you the most. She will eventually get better with the right information. It may take a while so its important for you to stay by her as tough as it may be. Remember, if you think it’s tough dealing with her and her “craziness”, you have absolutely no idea of the nightmare she’s living daily. Consider yourself lucky you’re not going through with this.

    I highly urge you to watch the documentary film, “Under Our Skin”. It’s a film about lyme disease and the desperate struggles and sufferings of the victims to get better, but also gain acceptance. Morgellons sufferers are on the same boat when it comes to the amount of suffering and rejection.

  12. zara cybele said:

    Psychiatric News June 1, 2007
    Volume 42 Number 11 Page 24
    © American Psychiatric Association
    Letters to the Editor
    Morgellons Disease
    Robert C. Bransfield, M.D.
    – Author Affiliations

    Red Bank, N.J.
    I am pleased to see that in the December 15, 2006, issue, Psychiatric News drew attention to Morgellons disease and that the excellent article gave sound advice on communicating with delusional parasitosis patients. However, I would like to add comments about the distinction between Morgellons disease and delusional parasitosis.

    I’ve evaluated and treated Morgellons patients, spoken with researchers and other clinicians who work with these patients, read the limited literature on the subject, and reviewed a database of 3,000 Morgellons patients. The Morgellons patients I have seen had surprisingly similar symptoms, with an abrupt onset, often following a toxic exposure. Before the onset of their illness, these patients’ mental status appeared to be quite representative of the general population, and some (including physicians) were high-functioning professionals. The condition appears more common in nurses, teachers, and in family members in the same household, which suggests a contagious component.

    After the onset of the illness, these patients report surprisingly similar symptoms. They have a combination of bizarre dermatological sy mptoms, cognit ive impairments, mood disturbances, and sometimes paranoia and suicide attempts in later stages of the illness.

    Their symptoms are not compatible with schizophrenia, bipolar illness, substance abuse, or other recognized causes of delusions. When patients complain of fibers protruding from their skin, examination with a low-power digital microscope can visualize and photograph the presence or absence of these fibers. In addition, many Morgellons patients test positive for Lyme disease. The mental symptoms seen in Morgellons are similar to those of other chronic general medical illnesses with psychiatric manifestations, since the mental symptoms fluctuate in a pattern similar to that of the general medical symptoms; and this suggests that the mental symptoms are probably associated with immune and/or toxic effects upon the brain.

    When these patients are treated with modest courses of antibiotics, their dermatological and psychiatric symptoms often show significant improvement. Without a thorough assessment, Morgellons patients are commonly given a diagnosis of delusional parasitosis, resulting in a delay in proper treatment. Whatever Morgellons is, it is something very different and unique and should be considered as a condition needing further study and possibly listed in the next edition of the DSM.

    In summary, Morgellons disease and delusional parasitosis are two distinct clinical entities. Morgellons does not appear to be an imaginary or delusional illness and merits the research effort that we see with any other emerging and serious illness.

    American Psychiatric Association

  13. sister to Common Sense said:

    Just an adendum to the above
    I disagree in the use of Antibiotics being vicariously perscribed, I have thousands reporting to me.
    One of my peers, a peditrician, has a sign in her office, “Parents if you are here to get antibiotic, you are in the wrong place.”
    I have people report to me that they have temperatures of 99-100.8 when they normally run a very low temp. I personally run a temp of 97, if my temp is 100 then I am really running a temp.
    Temperature elevations only slight are a way of fighting off infections. That is how the human body works…I tell them it is okay to run a low temp as the body is recognizing something foreign even if your WBC’s are not elevated. This is a good thing.
    We want the body to recognize this syndrome as foreign and try to burn off the pathogens. If the temp goes to 101 or over then, draw blood cultures and treat with antibiotics. If a culture and sensitivity comes back positive and there is an antibiotic that pathogens will respond to then by all means give the patient an antibotic.
    The practice of randomly prescribing drugs to treat infections, that we don’t have a clue as to what it is, in my opinion is malpractice. The body is an amazing thing, it can kill off pathogens without antibiotics.

    We need to counter these with probiotics and increase the immune system along with diet and chemicals.
    We are misusing so many antibiotics in our culture and the Human body has no way to fight foreign pathogens. This goes with antifunguals and antiparasitic drugs. If you don’t know the bug don’t treat by throwing everything in the pharmocopia at it.
    In the words of my mentors, “When in doubt, do without drugs.”
    Sister to Common Sense

  14. sister to Common Sense said:

    PS In the above I meant to say “diet and no chemicals”
    Sister to Common Sense

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