Sam Hunt graciously forwarded an item from KTVU TV about Morgellons Disease, a skin-crawling, muscle-twitcing condition that affects some 3000 persons nationwide, including former A’s/White Sox/Blue Jays closer Billy Koch and his family.
It started in Oakland four years ago. Koch saved 44 games and was the top reliever in the major leagues. His fastball wowed crowds. And then the strangeness began.
His wife, Brandi describes their symptoms: “It was the scariest thing I had ever realized in my entire life. There was matter and black specks coming out and off of my skin.”
Within two years — at age 29 — Billy Koch was out of baseball, partly because of the uncontrollable muscle twitching that went on for months at a time and often kept up him up all night.The disease is characterized by slow healing skin lesions that often extrude small, dark filaments, especially after bathing.”That’s when it would really just ooze — literally ooze out of my skin,” explained Brandi Koch.
The couple was at wit’s end after numerous doctors not only provided little in the way of relief, but actually were skeptical about their health problems: “There’s no reasonable explanation for it. I’m not seeing things. l’m watching it happen. We’re pretty sane people¦” lamented Billy.
Infectious disease specialist Dr. Neelam Uppal sympathized with the Kochs’ plight: “They’ve seen several doctors, [and] everybody’s told them they’re crazy. It’s in their head. They’re delusional.”
I just threw up my Boston Market lunch.
I used to think Billy Koch stopped taking steroids and lost his fastball, but this is just awful.
You want to talk about throwing up your lunch? Imagine running fevers for months at a time, puking every hr for weeks on end, & having something completly horrific “ooze” out of your skin. Terrorfying doesn’t even begin to cut it… I know this is creepy & admittedly disgusting-but try to be a little empathetic. Please, I’m sad & scared enough as it is… the last thing I need is people talking about how I make them sick.
Interviews and observations with late stage lyme and Morgellons spectrum type disorder reveal consistencies in presentation and complaints over time and across subjects. neurosystemic complaints yield test data described as normal the first year, revealing enlargement and masses associated with the heart, gall bladder, pancreas and other organs the second year, this is the third year and the patient has been dropped from every doctor, labeled psychiatric despite emergency hospitalizations and nearly complete incapacitation.
This all sounds very familiar. My wife has had a condition similar to this for 5 years. The MD doctors (mental deficient in my book) all diagnose her as dellusional. None of them have attempted any physical exam, not even using the stethescope to listen to her heart or lungs. But within 5 minutes are able to diagnose her as mentally ill. I had an opportunity to go to med school but missed it. I regretted it for a long time but after seeing what the medical “profession” has turned into, except for the financial part, I am glad I did not. Other than golf and creative financing, don’t know what they are teaching in med school these days. Compassion is not one of them.
This all sounds very familiar…………………………………………..
I have been trying to get in contact with Billy over the last few years. I really feel for him and his family and I hope they get to the bottom of this disease. I know Billy is not delusional. He is very down to earth and if he says something like that is happening, it really is. A straight shooter. Call me, Capt. Chaos.
I know what you are going through….I have had it for 2 years. It is draining on all sides:- emotionally, financially, socially, taking its insedious toll on every corner of your life. To have things ooze out of your skin and have a constant feeling of being bitten and things scuttling just under your skin is the stuff of nightmares….In cases like Billy’s and mine, a living nightmare.
a) biting by things you can’t see….but there are lots of ‘black pepper dots’ on everything
b) the nightmare begins with constant stinging – really kicks into high gear after the sun goes down…
c) start throwing out everything, ripping up carpets, repainting, constant cleaning, mopping, washing…..in an effort to get rid of this thing
d) insomnia takes its toll, work all day in an exhausted state, only to come home to the enemy that takes over the night shift!
e) try to convince those near to you what you are going through – get strange looks and they start thinking you are having a breakdown
f) go to the doctors….tests reveal nothing…diagnosed in 5 minutes with great scepticism….continue seeing doctors until you realize you are exposing yourself to the very real threat of being labelled dilusional and horrifyingly worse still, the fact that they can label you mad and have you committed which has happened in numerous cases!
g) start looking for others with this affliction as they are the only ones who understand….make a conscious effort to ‘self help and self medicate’ and pass on to others with the affliction what is ‘working’ to any degree.
h) The doctors are in their offices all day dealing with the routine cases of known ailments that present. They have no time to learn anything new from when they left Uni.
We are more educated on this disease than they are…they are facing the land while behind them the Tsunami is fast approaching….they are too busy dealing with the regular stuff to turn around and see the devestation that is bearning down on them! Wake up and turn aroun!!!! This is a very real and devestating affliction! Do something about it before it is too late.
Billy and family – I hope you manage to have some good days….
Much love to you all
Bunty
I am one of the fortunate ones who does not present with all the open sores and vicious biting, but I totally understand the ones who do!
End of Summer 2005 I was bitten by FLIES (not mosquitos or ticks) in the elbows (they likes joints and cartilage) and the Achilles Tendon. Persistent sores developed that did not heal. They had curious fibers sticking out of them, which I dismissed as implated from my clothes or what not into the scab material before it dried. They did finally seem to be healing, but left raised, non-scab-like spots later on that, when I scratched them with my fingernails, were like powdery fibers. I thought it was strange that BLUE fibers were covering the sores.
After that noticeable NODULES developed on the tendons in regions of the sores. I tried squeezing and massaging them away (probably the worst thing I could have done to prevent it from spreading). They were painful and thought provoking. Today (one and a half years later) one still remains on my right forearm. It is flat and disc-shaped. During this time my forearms were so sensitive, my wife couldn’t touch them.
Open sores started to appear on the very crown of my head. I knew it was not from too much hair brushing. I also experienced black flecks which I could, with difficulty, pick off my skin with my fingernails. Sand colored ones also appeared. I remember my wife saying, “I just changed the sheets and there is sand in the bed already!” I tried to tell her it was coming off of me, but she thought I was delusional too!
Immediately after my biting experience, I began to feel very “apprehensive.” Between then and the next three to four months I lost 26 pounds. I did not associate this with the bites for over a year, and then not until reading about Morgellons on the web, and how many others were experiencing similar symptoms.
I went to my doctor and explained what happened and what I thought it was. He, of course, diagnosed me “for now” with Delusions of Parasitosis. I can understand why doctors might think you are delusional. I left him with lots of printed material and websites to look at, but I’m sure they just got stuffed in my file and ignored/forgotten.
In fact, I didn’t go to the doctor until so much vitality was drawn out of me, my face started to look like a crumpled up old paper bag. I felt like some demon had gotten its claws in me and was sucking the life out of me. I cast it out in Jesus’ name, and I actually felt it leave me. After that my vitality started to return. I figured that was it, but although the spiritual parasite was gone, the physical parasites remained.
Next, I developed Raynaud’s Syndrome in my right index finger. Prior to this, I had felt a hardness developing in the section between the first two joints. To be brief, I’ve read on the web where these creatures may be using silica in the body to manufacture silicone. Perhaps this is what is cutting off the circulation to my finger. I also feel it in my back between my shoulder blades, and no visits to the chiropractor have helped. It is affecting my lungs and heart.
The biting and crawling didn’t start until a year later, after a trip to Missouri to attend graduation ceremonies when my son completed military training at Camp Leonard Wood. At first, it was only in the laundry room, and I associated it with the cats and the dog that stay in there during the night. A neighbor had come to feed them in our four day absence. Then, I thought it was something I contracted from the fourth rate motel we managed to book on the trip. I’ve been feeling the “bugs” crawl and bite me for about nine months now. I am the only one in the family to feel them. My son thinks it’s just the hairs on his legs moving. Hope he doesn’t get it.
I’ve read that there are really to parasites involved: a worm-like creature that crawls under the skin, and the bug-like creature the crawls on the skin and bites you. The former produces an enzyme that attracts and feeds the latter. Together they form a symbiotic relationship, and are there, apparently, just to torture you! That is the opinion of a fellow sufferer, and not a doctor, of course.
I thought “scabies” at first, but they remained only on my legs below the knees for a long time, gradually moving up from there. I figured scabies would focus primarily on the genitals. After that, they mostly bothered my head under the hair and then my face. Now, they have claimed my whole body as their private territory.
The bites are mostly innocuous, but sometimes give quite a jolt. Pinching, stabbing, stinging, biting, burning are all ways I’ve tried to explain it. Again, I am fortunate to not have the open lesions that, for the most part, characterize this infestation. Around my waist, on my belly and back there are rough little spots, and tiny red splotches will appear like micro-blood blisters. They also manifest, in my case, as small colony-like red spots under my eye and near my nose. I’ve put a little Vicks Vapo Rub on them the last few nights before bed, and they seem better.
Initially, on the back of my head one of those fuzz bumps appeared. I would continually scratch and irritate it. I read somewhere that the critters didn’t like salt, so I’d rub salt on it and it went away, only to appear a little farther down on the other side of my spinal cord, but still above the hair line. Now, with salt and irritation, it has disappeared.
Other associated symptoms include confusion and lack of concentration, muscle and joint pain, sudden thinning of hair on my head and weakening of my eyes. I’ve felt my teeth get very sensitive, and my lower back is threatening to collapse.
My son and my wife don’t seem to have it. My wife is fairly sympathetic, but after reading a few websites, wants it to “delusional,” mostly I think, because she doesn’t want “bugs” in her house, and it’s probably only a matter of time before they start to get it. Besides, insisting that the rugs be taken out of the laundry room and the bathrooms goes against her grain.
I’ve wondered at times, if it isn’t delusional myself. Especially, since the bugs seem to respond to negative emotions. Whenever I feel them move or start to bite me, I assess what I’ve just been thinking and/or feeling. Often, I’ve just been irritated about something. I hypothesize that the emotional energy pours into the nervous system and activates them. If I think about killing them, even one of them when I feel it, it seems like they all start to panic and squiggle and bite. Some say it’s in your lymph system.
I’ve assessed my condition often and asked myself many questions. I’m especially curious why my wife and son don’t have this. Perhaps it’s because they didn’t get bitten by an infected fly to start the cycle. Perhaps it’s because I am intolerant to wheat and dairy, which they both eat, and I lack certain enzymes that prevent them from being infected. Perhaps it’s because I don’t use harsh shampoos and body washes that don’t have all the methyisochlorizolinones etc. that maybe keep them at bay?
If you could just kill them off and out of your body, and be done with them, that would be wonderful! But, to rid them from your environment, when no one else truly accepts that they’re even there, it quite another. The many things I’ve tried would take another long, tedious page to relate, so for now suffice it to say that they’re ranged from salt baths, with hydrogen peroxide (food grade) to extensive Spring Cleaning, to “zappers,” etc. Recently, I plugged an electronic mouse repeller in the laundry room. It puts out sonic signals that repels mice and spiders and has an electromagnetic component to it as well. This has greatly diminished their presence. In the bathroom where I felt them most, I placed an ion generator, and I often go in there and touch it to fill my body with electrons, sometimes soaking wet. And most recently, I’ve read that UT (urine therapy) works with so many other things, that even though it sounds gross (and is gross) I tried it. It’s been about a week and curiously they seem to be greatly diminished or at least dormant. Perhaps it is balancing some deficiency in my system.
I got really soused at a party the other day, lost my dinner and everything. After that I didn’t feel them for over a day and wondered if I hadn’t overloaded them with so many toxins? Perhaps they were drunk themselves!
For now I’m focusing on the urine therapy, as it has many health benefits even if it doesn’t exterminate the varmits. I know this all sounds crazy, but it’s amazing what you’ll try to get rid of these “delusions!”