My Story

[Supervelous]

Hi all,

First post to this site. Just wanted to give my story of what could or could not be Morgellons. It all started in college, maybe around 2002 or 2003. I'm not sure what my 1st symptoms were but I don't remember them being itchy or crawly skin, or at least those weren't the 1st things I noticed. I remember the 1st thing I noticed was numbness in the back of my head around the scalp area, just a weird feeling hard to describe....numbness / tingling. I'm going to go into a lot of detail, some which might be overkill, some maybe I'm attributing to this condition but could be something else, etc. but I think its important for people who may or may not be suffering from this condition to go into detail and explore all possible links, scenarios etc (does everyone have cats, exposed to fleas, only sex partners get infected etc)

Before I continue, I want to describe a couple things that were going on in my life around that time which I either attributed my sickness to, or now think could be relevant. I had sex with a girl about a month before then, but used protection.

Also, I'm not sure if it was around this time or not, but there was a time when my cats at my parents home had fleas real bad, and they were in our basement really bad, and would jump on our legs, bite us etc. The cats also had bad flea problem, and would sometimes come and lick our hair / scalp when we would sit on the couch, etc.

Anyways, my first symptoms were the numbness / tingling, and I went to the doc and they said I was fine. Then one day I just started feeling really foggy / brain cloud. I had my new GF take me to the ER, they did a CT scan but everything came back OK.

However, I started never really feeling good starting at this point- brain cloud, tired all the time, swollen glands in neck & other areas, pimple like things on my head, bad sinus pains sometimes really bad around the eyes, rashes on legs, arms, pain in joints (hurt really bad when I sneezed in my muscles - horrible pain when sneezing in my upper arms). My skin felt like it "hurt" more than itching. I noticed when I would take a bath or be submerged in water (pool, etc) I would feel better, and not just my skin but in general, but when I would get out it would get bad again.

Somedays I'd start out feeling OK, then it would start with a tingling / pain in my scalp area, then it would seem to spread through my body and my skin on whole body would hurt / dull headache, sinus issues.

Sometimes my throat would hurt like persistent throat infections, I got sick a lot, etc. Later I started getting an eyelid twitch in my left eye. I think I worried myself so much over these things that at one point I was throwing up daily, this frothy white foamy stuff....I'm not sure if that was a symptom or just stressin myself out because that does not happen to me now. I thuught maybe I was dying of cancer or something at one point.

Now, my gf I noticed also seemed to be starting to get some of these symptoms slowly, the glands, never feeling good, always tired etc. so I had convinced myself it was contagious, and I figured STD since noone else around me seemed to exhibit these things and I had the sexual encounter before her.

I went to the doc many many times, school nurse, etc. and always got clean bills of health, your fine, etc through STD tests, blood tests etc. I then convinced myself I must have gotten HIV through a sexual encounter, and was about to kill myself. I wrote a note several pages long, started preparing myself...then took an HIV test but it was negative and didn't do anything.

I also had loss of sexual desire (decreased libido). I was basically a wreck. And my gf seemed to have a lot of the same symptoms. However, at one point we broke up and I noticed that for both of us, the symptoms improved...I started feeling better in general, head clearing up, more good days where I felt at least ok, etc. She I believe had same experience. Then, when we got back together, and later married, I noticed it would get worse again. I thought it was weird and possibly thought it must be something transmitting back and forth or something that when two ppl are together it gets worst?

When we were married we'd take a lot of baths, both of us, I never brought up being sick because even my wife dismissed it and thought I was crazy so I stopped talking about it, but I took baths to relieve the pain, and I noticed she took tons of baths too. I noticed during being married also that I always had lots of phlem, and it smelled my breathe was almost always bad even though I practiced good oral hygiene, we'd also seem to get a lot of sores in our mouths, etc.

My bowel movements were also weird, sometimes very soft, sometimes with black tarry spots in there, etc. Lately also my sperm seems more yellowy than white, and sometimes when I pee it hurts a little, is on/off - but that may be unrelated (bladder infection, UTI maybe?).

When me and my wife got divorced, I started feeling better even though I lived in the same place (she moved out). Still had bad days and some symptoms, but had good days more often too. Now 2 years later, my main symptoms mostly seem to be headaches sometimes, sinus problems, skin hurting a bit, itching too sometimes and some bowel issues, what seems like persistent mucus, throat issues, etc, malaise. But I have good days where I feel fine as well.

One of the biggest skin issues I have now is I get bad sores / patches of dry skin on my hands that sometimes open up / bleed, etc, my whole hand gets raw, open, red bumps, hurts! Then gradually gets better as long as I don't touch it. I get these small red dots on my skin in weird places, really small not zits or anything just tiny red dots. Also, I notice sometimes when my skin hurts and I have a headache, if I workout at the gym, the sweat makes my back burn (made me hypothesize fungal infection or something?). but the wetness of it would make me feel better temporarily besides the burn.

Anyways, I just chalked it all up to allergies or something since I had so many docs in the past tell me im crazy, I just started living my life. However, I met a new girl a couple months ago, and we've slept together. Lately she's been complaining about things I've experienced in the past that I have not told her about at all. Her eyelids been twitching, which mine was doing back not long after I started with all this for weeks! She said it never happened to her before. Also she's started having a LOT of headaches and stomachaches (my wife complained of stomachaches a lot, maybe sex related, cervix etc?) She complained about swollen glands a couple weeks ago. Let me reiterate I have never complained about a single thing to her or told her about my past issues (since I was told so many times by docs & others I was crazy I started thinking maybe somehow it was in my head). She seems to not feel good a lot and has had some patches of dry skin. She has complained about her stomach burning (after sex) and my wife did before a couple times too....but I have tested for STDs and come back negative always.

I'm also worried my kid may have it, she scratches a lot and complains about how itchy her skin is.

So I started researching again and found some Morgellans sites, and lots of their symptoms seem to match mine, I noticed quite a few people had pets, so maybe fleas or something else with pets? Maybe the disease is some type of skin fungus or bacteria, that when contracted attracts certain mites or parasites that wouldn't ordinarily be drawn to humans? I have never noticed any fibers or anything like that. I have been diagnosed (correctly or incorrectly) by a derm for Tinear Versicola, and i remember he did a skin scraping for it. He gave me a pill that seemed to make me start feeling better for a while- I remember thinking I found the issue. But then when I was done with the pill it got bad again. Maybe this was a clue this is some type of fungus (as Tinea Versicolor is) so the oral med started being effective a bit?

My Back has spots that won't tan from Tinear Versicolor, I have cream and shampoo for that. Tinea Versicolor however is not supposed to cause any pain, just discoloration when the rest of the skin tans, its a common fungus. I have noticed lately that along with my hand skin issues, my pigment in my arms seems to be getting very white in patches though.

Anyways I think I've written enough, and I apologize for being all over the place, as I write I remember other things...just remembered alcohol seems to make it worst...especially certain things like wine particularly red wine & beer?- seems to give me headaches and make it act up bad.

So anyways I'm encouraged that CDC seems to be looking into this, for all us people who have been called crazy, and if it happens I have something else and not Morgellons, I will still follow Morgellons research because I can sympathize with the cause of those of us who are sick and its so obvious but we get told we're crazy...even when people around us who we never tell start getting sick.

I also seemed to notice I sneeze a lot more, and people around me seem to get itchy / sneeze alot as well. Sometimes when I sneeze I seem to see "floaters" in my eyes as well.

OK enough now!!!

Anyone have similar experiences? Again sorry for the jumbled nature of this post but I tried to include things over a 6+ year period and hard to recall everything in order at once!

I do know I seem to have gotten better from the early years, but maybe bc I try not to worry / think about it as much / stress myself out etc.

[Sadsack]

Supervelous -
I relate to a lot of what you describe, but a couple of things jump out at me that I'd like to check out with others.
Those tiny little red dots - I seem to recall that they are caused by a certain Lyme co-infection - ? Babesia, perhaps? I know I have them, so does my roommate, and I've heard it from a lot of others also afflicted.
I am very curious about the white patches. I just started getting them this year, but my roomie has been developing them for several years. He has two large ones on his face, and one on each forearm. He might have others, but those are the only places visible to me (unless he is wearing shorts - we live in FL).
I just figured it was a primary Morgellons thing, but if you've been diagnosed with a fungal infection as the cause, it might be worth a trip to a derm.
SS

[carla]

Hi Supervelous ,
I constantly think about how I caught this and when exactly it started.
There were so many possible vectors for me,all of them more likely than the next.
My thinking is that it starts out as something that is in the air. We breath it in and it wrecks our immune system then works it way from the inside out. Maybe thats why it took me years to see a fiber.
In the meantime we are open to every parasite,fungus or bacteria we come across.
Whatever is happening we need to strenghen our immune systems and dettox every so often.
carla

[Baraka Obam]

Stress is NOT the cause of disease, it is an underlaying malady not yet found. You could actually be our poster child, you have quite a few of the problem. The people you see itching, most likely they just have a early infection of this. You are noticeing them because you itch, be a little more perceptive look them over, look at their eyes, tongue, skin, ears, arms also when you watch TV and see they offer extra strong itching cream over the counter, it is made for millions not thousands. In fact watch the TV ads for your future maladys. Have you had alopecia or any thinning of hair, watch the girls part in her hair, that tells all, the part will get wider.

Alopecia areata - Wikipedia, the free encyclopedia

Take a look at the picture of the alopecia, that is a SEVERE CASE, most will get only a TINY spot.


I also believe it is spread by sex, fluids!! One more thing, what happened to your head with the tingling also happens to the hands, carrple tunnel.

Get a lymes test, go to a doctor that is a specialist with lymes disease.

Get an H-Pilori test, some how I think this bacteria in the stomach may have a little to do with your problems it is on my list of things to do. HOW old are you????? Look back at all your childhood diseases and also take a good look at your parents skin, this may tell you more about how long you have had this, your parents skin does not have to be ravaged but, exzema, red face, red skin on spots of the face, dermatolgy problems, red dots, heavy bleeding tiny spots, itching ears, heavy deposit on tongue, geograpic tongue, keratosis on the back of arms ( white pimples) spots on body that will not tan, especially on the arms, lots of brown new frekles on the arms. These all happened to me, so look over your parents, from the time I got it, untill the time it started in utterly destroying me piece by piece, was just about 18 years, from that point on it was ALWAYS somthing.

[Supervelous]

Thanks to everyone for the replies I am going to respond later at work now but have more to add to the replies! Will post around 9 or 10 pm so check back tonight or tomorrow if u have time. Thanks!