Long-time lurker finally introduces herself.....

[emarie88]

I'm not sure when "it" started, but the worst of it began in the summer of 2009. I live in Sacramento, CA where mosquitos are a problem. Various methods of control such as overhead spraying have been used here in an effort to curtail potential cases of West Nile virus. In 2009, they began using genetically engineered biocontrol insects, such as parasitic wasps, to kill the mosquitos. What follows is very strange indeed, so I feel I must first tell you that I'm not a hypochondriac, I have no phobias, and I'm not delusional.

I noticed some very strange looking flying insects in our home, one of which was half buried in my forearm. I could feel them in my nose and always seemed to be surrounded by tiny flies. It even felt as though flies were hatching from me or my clothing, and I was constantly blowing my nose in an attempt to expel debris. Also, saw what appeared to be a long blue fiber (thought it was from the ironing board cover) disappear into my forearm! I went to the internet in search of information, and found that others were experiencing similar horrors. I armed myself with some of the suggested shampoos, oils, etc and thus began my journey.

I should mention that before the insect invasion, I was noticing things like individual hairs that would adhere to my forehead. I was constantly "peeling" them off, but at the time it didn't seem significant. I also would feel as though water had dripped onto my lower leg, and after looking down it would be perfectly dry. Weird, I thought. Maybe neuropathy of some kind?

After about 8 months of experimenting with epsom salt baths, constant cleaning and vacuuming, washing clothes in borax, healthy diet etc., I managed to alleviate the worst manifestations. The hair is still giving me problems. I have tiny hairs all over my face, and the hair on my head moves by itself and tries to stick to my forehead, cheeks, wherever it can reach. I always wear it up. I lose clumps of hair in the shower, and it has an odd smell sort of like roofing tar. Baking soda down the drain seems to help this, but not for long. Other weird symptoms include patches of pigment-less skin, light and dark brown blotches and spots, tiny red spots, transparent hairs, and things that look like thin white worms under my skin. And itching, stinging, biting, although this is much less of a problem for me now. I'm afraid of telling a doctor about any of this stuff for fear of having my children taken away from me.

This forum has been a great source of information, and reading others' accounts of their Morgellons manifestations has reminded me that I'm not alone, I'm not crazy--this is for real.

I'm not holding my breath for the CDC's report, but I feel I'm keeping the worst at bay, although this my no means has been cured. At least I'm able to function, although I tire more easily now. In a separate post, I will make a list of ordinary and easily obtainable items that have eased my symptoms.

I'm glad to be here and I wish all of you the best,

emarie

[Jo]

Hello Emarie,

Thanks for joining us. Sorry to hear about your struggles - you certainly are not alone.

What you observed and felt in 2009 is probably very relevant. I am researching and learning about the strange connection between flies and morgellons.

You mentioned "I noticed some very strange looking flying insects in our home, one of which was half buried in my forearm." did you keep any of these flies, if not would you recognise them??!

Welcome to MDR! There are lots of experienced sufferers here - we are one big family

Jo

[MeaganM]

Welcome emarie. I'm sorry to hear that you are going through this but I'm glad that some suggestions on this forum have helped alleviate some of your symptoms.

Yes, this is a crazy, crazy disease. Sometimes I wish that the symptoms weren't so bizarre so we could get help without fear of losing our children. Unfortunately, this is not the case and we have to suffer alone in order to keep our dignity (and our children) while silently going insane and self-treating.

I hope you join our community here and give advice, ask questions, and/or help us support the increasing amount of new sufferers coming here everyday.

I lived in California when this all started as well. Our neighborhood was newly built and when they did the landscaping, they discovered that the soil was infested with fly eggs. They tried to combat the issue with pesticides but it didn't help. We had thousands of flies in and around our yard and house. This was the typical house fly but I think it was a factor in why my family became ill.

We would love to hear about the things you have used to help.

[tcmgpt13]

Hello Emarie,

I have to share with you that I, too, was lurking on MDR for at least two years before I actually joined in. I also found much of what others posted about their symptoms reassuring to my sanity. The discussions proved to me that what I was seeing and experiencing was not in my imagination. If I had gone running to a doctor instead of to my local herbalists (TCM) I might have run into that DOP label head on. Reading what was said here prevented that mistake. I did eventually (three years later) venture out and find an infectious disease doctor who did help me somewhat as far as learning more about what I had (lyme, reactivated herpes infections) and getting some medications which helped some of my symptoms (acyclovir for the viral infections and stromectal for skin parasites which only helped slow it down).

Yours is the first mention I have read here about feeling as if water were dripping down your leg, only to see a very dry leg. When I was first sick that was one of my fairly constant symptoms (since under better control). Anyway, it was the weirdest feeling. I think that whatever this organism is has the ability to block lymph, maybe even the peripheral capillary blood flow. I think it can move these fluids around in the body to create favorable conditions in which to reproduce since parasites love dampness and a ready food supply and so dam various areas in the body. I am fairly sure that's what happened when I developed an intestinal blockage about four years into this illness.

In my own case I cannot say that what I see is caused by tiny flies although in the fall I do see tiny fruit flies flying around any fruit which is left out to ripen sufficiently. Still I used to see that before I got sick too. In my own case flies are not what I am seeing in my lesions and around them. So far I have not been able to identify what I see. A mystery parasite. All our symptoms vary so much that I sometimes think it might depend on just what is in any particular environment or what any person might have been exposed to.

Oh, another thing I used to see when I was first sick was what looked like small white worms under the skin. I know you mentioned this too. Once these broke through my elbow en masse along with some blood and lymph. The area was very sore at the time. Over time this symptom improved as well, thanks I would say to the herbs which are prescribed to eliminate excess dampness from various areas of the body as they are effected.

It's a very frustrating illness for us all, especially with the niggardly amount of serious research being conducted on it. So sorry to hear you have this illness too, but glad you have found your way here.

tcm

[Pollyringworm]

Originally Posted by emarie88

I'm not sure when "it" started, but the worst of it began in the summer of 2009. I live in Sacramento, CA where mosquitos are a problem. Various methods of control such as overhead spraying have been used here in an effort to curtail potential cases of West Nile virus. In 2009, they began using genetically engineered biocontrol insects, such as parasitic wasps, to kill the mosquitos. What follows is very strange indeed, so I feel I must first tell you that I'm not a hypochondriac, I have no phobias, and I'm not delusional.

I noticed some very strange looking flying insects in our home, one of which was half buried in my forearm. I could feel them in my nose and always seemed to be surrounded by tiny flies. It even felt as though flies were hatching from me or my clothing, and I was constantly blowing my nose in an attempt to expel debris. Also, saw what appeared to be a long blue fiber (thought it was from the ironing board cover) disappear into my forearm! I went to the internet in search of information, and found that others were experiencing similar horrors. I armed myself with some of the suggested shampoos, oils, etc and thus began my journey.

I should mention that before the insect invasion, I was noticing things like individual hairs that would adhere to my forehead. I was constantly "peeling" them off, but at the time it didn't seem significant. I also would feel as though water had dripped onto my lower leg, and after looking down it would be perfectly dry. Weird, I thought. Maybe neuropathy of some kind?

After about 8 months of experimenting with epsom salt baths, constant cleaning and vacuuming, washing clothes in borax, healthy diet etc., I managed to alleviate the worst manifestations. The hair is still giving me problems. I have tiny hairs all over my face, and the hair on my head moves by itself and tries to stick to my forehead, cheeks, wherever it can reach. I always wear it up. I lose clumps of hair in the shower, and it has an odd smell sort of like roofing tar. Baking soda down the drain seems to help this, but not for long. Other weird symptoms include patches of pigment-less skin, light and dark brown blotches and spots, tiny red spots, transparent hairs, and things that look like thin white worms under my skin. And itching, stinging, biting, although this is much less of a problem for me now. I'm afraid of telling a doctor about any of this stuff for fear of having my children taken away from me.

This forum has been a great source of information, and reading others' accounts of their Morgellons manifestations has reminded me that I'm not alone, I'm not crazy--this is for real.

I'm not holding my breath for the CDC's report, but I feel I'm keeping the worst at bay, although this my no means has been cured. At least I'm able to function, although I tire more easily now. In a separate post, I will make a list of ordinary and easily obtainable items that have eased my symptoms.

I'm glad to be here and I wish all of you the best,

emarie

I don't know whether to be terrified or relieved. I have these same symptoms, too. The water feeling, the transparent hairs, the fibers going in the skin. I had a few white ones that wiggled into my fingers and toes. I haven't even mentioned it until now because it sounded so outlandish. I also have the dots of pigmentless skin all over my body. Mostly on my arms. I have expelled a worm from a lesion on my head, which is only one of the three lesions I have gotten. I don't have all the symptoms yet and I'm hoping with the diet and products, I won't get them bad or at all.

I also wanted to mention the flies. I don't have them all over me, actually never did so I was surprised to see the worm. But there is a post on one of the other sites by a man claiming to have been a parasitologist for the CDC that became infected while working. He posted that the insect involved with Morgellons is a genetically modified fruit fly that was altered to control insects in crops in the middle east. It's an informative post but not very encouraging. His name was mike1120, if you want to search the post out.

My hair and head has drastically improved with the use of salicylic acid products. Thank God for the people on this board. I went from feeling at 80% to 90% in four days with the advice of people here. My daughter is improving, as well. I'm so grateful, I don't even have words for it.

[skylark99]

Welcome emarie, and thanks for your post.

I also started with these symptoms in the summer of 2009.

Like many other people, I read posts on several forums before I joined and posted anything. Reading other people's accounts of what had happened to them helped me to dispel the feeling that I was alone in the Twilight Zone; I am better and still in the Zone but no longer alone. A minor miracle of support, empathy and caring that I have not got from the medical community.

It is an indictment of the current state of affairs within the medical community that we risk being labeled as mental health patients if we have the audacity to query our doctors about our symptoms.

You are so right that the risks are very great; loss of our children, our freedom, our jobs, and in some instances, any medical help for any other health issues that have occurred since the Morgellons symptoms began.

I have been to the doctor(s) since having Morgellons symptoms, and now that I have been labeled as having mental healths issues, it is very difficult to get anyone to listen to me when I have a simple strep throat and need antibiotics! I have found that once labeled, any credibility I might have had regards feeling ill for any reason has gone out with the tide.

The last doctor I had, I actually fired on the spot; I had told him I was not feeling well, listed my symptoms (non-Morgellons), only to be told that he did not believe me.
Three weeks later, I ended up in hospital.

At hospital the doctors were willing to look at everything else except the white elephant in the room. A lot of money and effort willing to be thrown at testing something that will prove to be a non-problem. A lot of money and effort to avoid admitting that this illness is real. A lot of money and effort willingly thrown out the window to back one's colleagues and prevent a mis-diagnosis from being discovered.

I am so glad for you that you have had the foresight to realize the risks and minimize them for yourself and your family. But I am sorry that you even have to do this. I am sorry that any of us have to do this.

The symptom of having the sensation of suddenly wet skin -when the skin is perfectly dry-- is a symptom that I have also had (thanks TC, for your mention of this, as well). When I had it during my second year of Morgellons the symptom was widely dispersed over many locations simultaneously, almost as if I were standing outside in the rain. It was particularly distracting and distressing. And yes, emarie, it does seem to be nerve related.

Incidentally, now that that 'wet-skin' feeling has stopped, I still have a struggle with being outside in the rain and having drops of water strike my face. I also still struggle with walking stocking-footed on the carpets and many other adaptive behaviors that I used to cope with the worst of Morgellons symptoms. It is a slow process, regaining my real self, feeling like I can interact with the world around me without consequence.

Like others here, your account illuminates that you have been on a journey that no one should ever have to undertake. But your post is underscored by great courage and self-awareness and self-belief, and tempered by a keen understanding of how political this disease is. And I appreciate very much your comments that some of the posts you have read in this forum have helped you in various ways. Your post will help others that come here in the future. As a friend once said to me: you are so strong to endure and keep on fighting.

[emarie88]

Having had a couple of years to experiment with a lot of different home treatments for Morg, not to mention getting ripped off ordering expensive cleaners, etc., on the internet, I have found the following items to be effective for keeping my symptoms at bay:

A generous amount of water softener salt in the bath (40 lb bag $3.83)
along with 1 cup of baking soda to alkalize

Also in the bath, a small amount of Dawn detergent (be sure to get the kind with enzymes) to help break down the stuff that comes out of the skin; and Dr. Bronner's peppermint soap (solid). I use this on my scalp and hair as well all over and have had good results in getting some of the debris out of my hair and skin. Whatever this is definitely hates peppermint.

Witch hazel (get the cheaper house brands) is a good astringent for the skin

I also use Nivea lotion (the one that has magnesium sulfate listed in the ingreds.) after I have added about 1/2 tsp each of peppermint oil and tea tree oil. Shake it well to mix it.

Also, the peppermint oil massaged into the scalp feels wonderful and is very cooling. Start with a small amount--it's very potent and has a powerful cooling effect which can be irritating and possibly toxic if too much is used. Sometimes I mix a few drops into some aloe vera gel before applying it to the feet.

I also take papaya enzymes, vitamin C, and magnesium. The magnesium has made a huge improvement to my overall wellbeing

Shampoos that work well: Giovanni's Tea Tree, which also has peppermint and menthol; Dermarest (salicylic acid--too right, Pollyringworm, they hate that stuff)

Dry the hair with a hairdryer. Don't let is dry naturally, because it gives the creatures time to reinfest and multiply. I didn't use a hairdryer for a long time before I got this, and I think this may have contributed to its worsening. Also, I douse my hair with hairspray and coil it into a topknot before going to bed so the "Medusa" hairs are too stiff to move around and cause mischief while I'm sleeping.

Again, many thanks to this board for educating and inspiring me to keep fighting this weird disease.

[jeanlong]

emarie,

hi, and welcome. you live in/nnear a hotbed for this M illness. bug bit me during a visit to California not far from san francisco, and then since then I have had intermittent M problems. Being a retired TCM expert, I use those strategies to manage the M problems - sometimes feel pretty normal and well; other times have miserable M skin problems.

Wishing you all the best.

best regards,
Jean

Originally Posted by emarie88

I'm not sure when "it" started, but the worst of it began in the summer of 2009. I live in Sacramento, CA where mosquitos are a problem. Various methods of control such as overhead spraying have been used here in an effort to curtail potential cases of West Nile virus. In 2009, they began using genetically engineered biocontrol insects, such as parasitic wasps, to kill the mosquitos. What follows is very strange indeed, so I feel I must first tell you that I'm not a hypochondriac, I have no phobias, and I'm not delusional.

I noticed some very strange looking flying insects in our home, one of which was half buried in my forearm. I could feel them in my nose and always seemed to be surrounded by tiny flies. It even felt as though flies were hatching from me or my clothing, and I was constantly blowing my nose in an attempt to expel debris. Also, saw what appeared to be a long blue fiber (thought it was from the ironing board cover) disappear into my forearm! I went to the internet in search of information, and found that others were experiencing similar horrors. I armed myself with some of the suggested shampoos, oils, etc and thus began my journey.

I should mention that before the insect invasion, I was noticing things like individual hairs that would adhere to my forehead. I was constantly "peeling" them off, but at the time it didn't seem significant. I also would feel as though water had dripped onto my lower leg, and after looking down it would be perfectly dry. Weird, I thought. Maybe neuropathy of some kind?

After about 8 months of experimenting with epsom salt baths, constant cleaning and vacuuming, washing clothes in borax, healthy diet etc., I managed to alleviate the worst manifestations. The hair is still giving me problems. I have tiny hairs all over my face, and the hair on my head moves by itself and tries to stick to my forehead, cheeks, wherever it can reach. I always wear it up. I lose clumps of hair in the shower, and it has an odd smell sort of like roofing tar. Baking soda down the drain seems to help this, but not for long. Other weird symptoms include patches of pigment-less skin, light and dark brown blotches and spots, tiny red spots, transparent hairs, and things that look like thin white worms under my skin. And itching, stinging, biting, although this is much less of a problem for me now. I'm afraid of telling a doctor about any of this stuff for fear of having my children taken away from me.

This forum has been a great source of information, and reading others' accounts of their Morgellons manifestations has reminded me that I'm not alone, I'm not crazy--this is for real.

I'm not holding my breath for the CDC's report, but I feel I'm keeping the worst at bay, although this my no means has been cured. At least I'm able to function, although I tire more easily now. In a separate post, I will make a list of ordinary and easily obtainable items that have eased my symptoms.

I'm glad to be here and I wish all of you the best,

emarie

[Pollyringworm]

The salicylic acid works because its antifungal. Drying your hair works because fungus loves moisture. The diet works because yeast thrives on sugar. If you dont have the insect aspect of the disease, try working on the yeast. Candida clear or some type of yeast therapy orally, phisoderm bodywash with salicylic acid on skin, dermarest psoriasis shampoo for hair--see if these work for you. Im curious to see how many improve with an antifungal approach.

Also, my best defense up till now has been theraneem lotion, which works on bacteria and fungus. Id rub it in my skin, wait a minute, and then rub the goo out. But now i realize that the salicylic products do the same, especially clean and clear(or generic) dual action moisturizer with salicylic acid.