Morgellons Poll

[janedoe]

1 cali santa maria
2 was in city 11 yrs, now in suburb
3 ocean 30 miles from here
4 had city water, now have water softner
5 trees overhang house
6 42 yrs old
7 just diagnosed
8 no job
9 dad ( living in house) does not have it, son ( not living in house) might
10 dog, stafordshire terrier, indoor dog, clean
11 havent traveled
12 i do the yardwork
13 shooting pool, videography
14 no public pool/hot tubs over 4 years ago
15 healthy, depression for years
16 smoke pack every 3 days ( light smoker)
17 no meds now, been off mental meds for 3 years
18 dont drink coffee..do like diet pepsi
19 not sure what legion is, sores?
20 under breats, few on arms and legs
21 same as above
22 same, right side slightly more
23 pain/burning under breasts, voice gruff, cough, nose stuffed up, then running.skin peeling around nose, backache
24 1st doc said paraporiasis, second doc said morgellons

[Ginny]

Originally Posted by Frankybme

Please answer as many questions as you can. We are hopping to find some common patterns among the answers.

If there are any other questions you want included, just send them to me. Also you might want to quote this post and then just fill in the answers.

1. State you reside in New Jersey
2. Inner City? Suburb? Country? suburb
3. Do you live on a lake, by the ocean or pond? pond
4. Do you have city or well water? City
5. Do you live in a heavily treed area? yes
6. Age at onset 73
7. Number of years affected 9 months
8. Any other family members affected? NO
9. Your occupation at onset? Retired Physical Therapist Asst.
10. Do you own pets? Cat? Dog? Other? Cats
11. Have/had you traveled to California, Florida or Texas? Europe? no Other?
12. Do you/have you garden, hike, camp or spend allot of time outdoors? no
13. List your activities and hobbies. Reading, swimming, Crafts use to be sports but I'm in a wheel chair now.
14. Have you used a public whirlpool or pool? I have a pool in my back yard for use in summer.
15. Please provide your medical history (i.e.: do you or have you had any other diseases? Cancer, Lyme, Thyroid, AIDS, other?). Lymes but it was cured.
16. Do you smoke? no
17. Any medications you have taken or are taking? Many
18. Do you drink more than 8 cups of coffee a day? no
19. As far as lesions, have you had more than 10 at a given time? yes
20. What part of your body did the lesions start? chest
21. Is there any area that they are most prevalent? If so, where? Arms, hips, thighs, chest, side of face and in my hair.
22. Is one side of your body/face more affected than the other (i.e.: left vs. right)? about evenly matched
23. Please list your current symptoms (brain fog? vision disturbances? fatigue? nausea? weight loss/gain etc?) brain fog, vision not good at times, Very tired could sleep for hours, itching, burning, swelling in legs I am not sure that is from morgellons or lip-edema, Skin becomes very old looking when I get the burning, dehydrate at times like when I have burning, My joints have been more painful since I have gotten this disease, and my respiratory system seems to be working overtime.
24. What did other doctors diagnose you with (i.e.: folleculitis? Scabies? DOP - delusional parasitosis)?

scabies, then delusional parasitosis. one said I had a fungus. I stopped going to anyone except my GP he came the closes to what I have but I have been researching for myself in Jersey the doctors raised the bands in Lyme disease and they are not talking about Morgellons at all from my experience.

[lynnschnepp]

Originally Posted by Frankybme

Please answer as many questions as you can. We are hopping to find some common patterns among the answers.

If there are any other questions you want included, just send them to me. Also you might want to quote this post and then just fill in the answers.

1. State you reside in Arizona
2. Inner City? Suburb? Country?Maricopa county
3. Do you live on a lake, by the ocean or pond?no
4. Do you have city or well water?city
5. Do you live in a heavily treed area?no
6. Age at onset40 years old
7. Number of years affected 8 years
8. Any other family members affected?Brother&cousin i believehas it..brother has gotten crazier from due to no help..cousin has been put on psyc meds.drs thinking it was in her mind..the outcome is that she is crazier than ever before the meds not helping but making it worse
9. Your occupation at onset?specimen processor in a medical lab
10. Do you own pets? Cat? Dog? Other?cats
11. Have/had you traveled to California, Florida or Texas? Europe? Other?no but have a couple of friends that just came back from iraq and was with them the night that i did break out in welps
12. Do you/have you garden, hike, camp or spend allot of time outdoors?broke out the first month of living in my new house..woman had rats,rabbits,ferrits,birds,cats,and dogs..had to clean entire backyard&inside to ride of everything and still is not clean..i broke out in welps while my cat was sleeping on my chest..it rained that night and i figured she got into something in the backyard and what was on her paws got on my chest
13. List your activities and hobbies.hiking, fixing up my backyard and home,reading, now my spare time consisted of this horrible disease
14. Have you used a public whirlpool or pool?no
15. Please provide your medical history (i.e.: do you or have you had any other diseases? Cancer, Lyme, Thyroid, AIDS, other?).no diseases like that..never had problems with my skin..started having problems after i moved into this home in2001
16. Do you smoke?no
17. Any medications you have taken or are taking?no
18. Do you drink more than 8 cups of coffee a day?i drink a pot of coffee a day
19. As far as lesions, have you had more than 10 at a given time?the first onset of this nightmare i had lesions all over that just got worse...now i just leave them alone..i believe that the top part of skin heals but what lays underneath is still the continueing problem
20. What part of your body did the lesions start?on chest
21. Is there any area that they are most prevalent? well that depends on that day..i use to have good days and bad days..now i have bad days and bad bad days. Is one side of your body/face more affected than the other (i.e.: left vs. right)?no
23. Please list your current symptoms (brain fog? vision disturbances? fatigue? nausea? weight loss/gain etc?)brain fog.all joints hurting,swelling in various parts of my body,when rubbed they move,headache,twitching,blury vision,hot and cold sweats,skin is folding over especially in wrists to look like thick wrinkles,nails are weakened with ridges and flat,loss of more hair, headaches that are unbareable,not sure if its the muscles or bones that are popping but that is all over my body..mucos in throat,,coughing and throwing up,,,stomach feeling full all the time,consistant gas,no energy went to er now i have heart damage,,,still waiting to be seen by a cardiologist,,that one is the worse and i am scared..
24. What did other doctors diagnose you with (i.e.: folleculitis? Scabies? DOP - delusional parasitosis)?

the beginning scabies with the outbreak on chest..later delusional parasites, and possible morgellons from a complimentary dr...

[luckyme]

How do I answer the questions to the Morgellons Poll?

[sojii]

Originally Posted by Frankybme

Please answer as many questions as you can. We are hopping to find some common patterns among the answers.

If there are any other questions you want included, just send them to me. Also you might want to quote this post and then just fill in the answers.

1. State you reside in
2. Inner City? Suburb? Country?
3. Do you live on a lake, by the ocean or pond?
4. Do you have city or well water?
5. Do you live in a heavily treed area?
6. Age at onset
7. Number of years affected
8. Any other family members affected?
9. Your occupation at onset?
10. Do you own pets? Cat? Dog? Other?
11. Have/had you traveled to California, Florida or Texas? Europe? Other?
12. Do you/have you garden, hike, camp or spend allot of time outdoors?
13. List your activities and hobbies.
14. Have you used a public whirlpool or pool?
15. Please provide your medical history (i.e.: do you or have you had any other diseases? Cancer, Lyme, Thyroid, AIDS, other?).
16. Do you smoke?
17. Any medications you have taken or are taking?
18. Do you drink more than 8 cups of coffee a day?
19. As far as lesions, have you had more than 10 at a given time?
20. What part of your body did the lesions start?
21. Is there any area that they are most prevalent? If so, where?
22. Is one side of your body/face more affected than the other (i.e.: left vs. right)?
23. Please list your current symptoms (brain fog? vision disturbances? fatigue? nausea? weight loss/gain etc?)
24. What did other doctors diagnose you with (i.e.: folleculitis? Scabies? DOP - delusional parasitosis)?

1. Texas
2. Suburb of Fort Worth
3. No
4. City
5. Yes
6. Not sure; mild symptoms possibly earlier; very noticeable at 57.
7. Again, not sure; 6 months with noticeable symptoms.
8. No.
9. Community Relations / Administrative
10. Yes; my dog has it and I think I got it from her.
11. Live in Texas; noticeable symptoms were immediately preceded by a vacation in rural Arkansas.
12. Moderate
13. Shopping/ antiqueing, reading, music / guitar / composition
14. No
15. HBP, prolapsed mitral valve, eczema, chronic constipation
16. Yes
17. No meds except occasionally Tums;
18. Sometimes; usually about 6;
19. No lesions yet, but tiny pimple-like things.
20. No lesions; not sure where the pimply things started.
21. Arms
22. Left, especially on my head and face
23. Brain fog; I'm having trouble with simple thinking. Crawling feeling on and
recently began feeling it under skin. Some insect has attached itself to my eyebrows and eyelashes. They wiggle; I find them in my lashes and brows, which are falling out fast. So is the hair on my head. On the root end of the hairs is some kind of goop. Wiggling sensation where clothing is tight. Was feeling like I was being stung; that's stopped. Now there are tiny cream-colored round squishy things coming out of pores. It hurts because it feels as though they're being forced out the pores. Sometimes the things are hard instead of soft. Black debris and jet-black hair-like things around the pimples. Deep, wet coughing. Feeling like a caustic liquid has suddenly been squirted into my eyes or the back of my mouth. It burns and tastes terrible. There is a bad smell to this, BTW, and when I feel the liquid at the back of my mouth, it tastes the way it smells and nauseates me. it's awful. Thick, stringy coating in mouth in the morning that doesn't brush away. Goes away only when I eat. Vinegar wash helps to cut it. Vision problems; have had 3 new pairs of glasses in 6 months. Rash on lower legs; doesn't itch. Edema; never had it before. Sometimes in some places I feel like tiny things are flying at my face and eyes and landing on my hair. The hair on my head moves for absolutely no reason.
24. when this started, I thought I had head lice. I went to the doctor to make sure so I could treat. He decided I had scabies even though I didn't have tracks or lesions. He also wouldn't come near me for fear he'd catch it. The second doctor cleared me of scabies, thought it had probably been head lice and the med had taken care of it. After that episode, though, and everything I've read since finding the Morgellons info a few months ago, I haven't been back to the doctor. Why go if you're only going to be ridiculed or misdiagnosed?

[Natashacbk]

1. Vermont
2. Rural/Country
3. Connecticut River and lots of ponds.
4. City water
5. Not really
6. 41,42?
7. 3-4
8. Not that I know of
9. Marketing, web design, martial arts instructor
10. 2 dogs and a cat
11. Last 5 years- Florida, Okinawa, Amsterdam, Turkey, France
12. Avid gardener
13. Web design, graphics...cultivating my flower garden
14. yes
15. Hep C, ADD, Hip resurfacing surgery 2008
16. Yes
17. Adderol, Retin A, Colloidal Silver, Vit d3,c,amino acids and a mega b complex.
18. Sometimes
19. I never had until now-which prompted me to attack this aggressively.
20. Always on the face...never had any skin issues ever before, no acne - nothing
21. My face
22.The left side
23. I have become OCD about my face, fatigue, sleep issues, headaches, brain fogginess, eyesight has deteriorated, especially depth and perception..Had 20/20 vision my whole life. My eating habits have changed. Oddly, I have become hyper aware-very strange.
24. The first 3 told me that I had adult acne,-which I had vehemently disputed - these were not pimples. The next three I would classify as "the stepford wives" doctors because they all had that sickening smile, followed by offering some form of psychotherapy. Fortunately, I didn't fall for that nonsense, although I did think that their responses were kind of odd. My father, who has been staying with me (does not have Morgellons) has watched my skin change from clear to covered in lesions. He has witnessed my hysteria. When it comes to my well being, my father does not play around. As a result, he slammed every single dermatologist into their place, including a senior dermatologist at Dartmouth Hitchcock. I don't know what he did but he managed to get me in to see the head of the dermatology department at Dartmouth. This doctor acknowledged that he knew all about Morgellons...He acknowledged that they didn't know how to deal with it and the best he could do was to prescribe different combinations of vitamins and various topicals and that he will work with me to try and figure out how to get rid of this or at best alleviate the symptoms, until more is known.

[noone]

[quote=Frankybme;919]Please answer as many questions as you can. We are hopping to find some common patterns among the answers.

If there are any other questions you want included, just send them to me. Also you might want to quote this post and then just fill in the answers.

1. State you reside in -TX
2. Inner City? Suburb? Country? -suburb
3. Do you live on a lake, by the ocean or pond? -close to river now (but issue began before moved here when was not by water or lots of trees)
4. Do you have city or well water? -city (but try to drink purified water from health food store mostly.)
5. Do you live in a heavily treed area?- yes- live very close to park
6. Age at onset -33
7. Number of years affected -9
8. Any other family members affected? -no
9. Your occupation at onset? -customer service
10. Do you own pets? Cat? Dog? Other? -cat (inside- except goes out on balcony, 2nd floor, sometimes. Doesn't get out on lawn.
11. Have/had you traveled to California, Florida or Texas? Europe? Other?- no, but live in TX
12. Do you/have you garden, hike, camp or spend allot of time outdoors?- no, rarely spend time outdoors anymore b/c of gnats and flies coming around me
13. List your activities and hobbies. -reading, singing, cooking, go to plays, church, visit friends.
14. Have you used a public whirlpool or pool? no
15. Please provide your medical history (i.e.: do you or have you had any other diseases? Cancer, Lyme, Thyroid, AIDS, other?). hypothyroid, acid reflux, cholitis, bad back-spine out of alignment
16. Do you smoke? no
17. Any medications you have taken or are taking? Synthroid, also supplements like multi-vits, digestive enzymes, probiotics regularly. Tried Hydrated Bentonite Clay last year. Now trying Caprylic acid supplements (for yeast control)
18. Do you drink more than 8 cups of coffee a day? no
19. As far as lesions, have you had more than 10 at a given time? no lesions
20. What part of your body did the lesions start? n/a (no lesions)
21. Is there any area that they are most prevalent? If so, where? n/a
22. Is one side of your body/face more affected than the other (i.e.: left vs. right)? no
23. Please list your current symptoms (brain fog? vision disturbances? fatigue? nausea? weight loss/gain etc?) a little fatigue/brain fog (but may be hypothyroid too), always lots of mucus in throat- 24/7 always have to clear throat. in warmer months especially, seem to have small pimples on scalp more and some scalp itching, biting sensations...Are little gnats flying by you also symptoms?!
24. What did other doctors diagnose you with (i.e.: folleculitis? Scabies? DOP - delusional parasitosis)?- no related diagnosis, but one doc said some people are "just more attractive", another advised use DEET.

[Trust_On]

1. State you reside in? New Jersey
2. Inner City? Suburb? Country? Suburb
3. Do you live on a lake, by the ocean or pond? No
4. Do you have city or well water? City
5. Do you live in a heavily treed area? Yes
6. Age at onset - 45
7. Number of years affected - 3 Months
8. Any other family members affected? My girlfriend
9. Your occupation at onset? Trainer
10. Do you own pets? Cat? Dog? Other? Two Cats
11. Have/had you traveled to California, Florida or Texas? Europe? Other? Received a box of clothes from a friend in California
12. Do you/have you garden, hike, camp or spend allot of time outdoors? LOTS of hiking
13. List your activities and hobbies. Hiking
14. Have you used a public whirlpool or pool? Yes
15. Please provide your medical history (i.e.: do you or have you had any other diseases? Cancer, Lyme, Thyroid, AIDS, other?). Otherwise healthy
16. Do you smoke? No
17. Any medications you have taken or are taking? None
18. Do you drink more than 8 cups of coffee a day? No
19. As far as lesions, have you had more than 10 at a given time? No lesions.
20. What part of your body did the lesions start?
21. Is there any area that they are most prevalent? If so, where?
22. Is one side of your body/face more affected than the other (i.e.: left vs. right)? .
23. Please list your current symptoms (brain fog? vision disturbances? fatigue? nausea? weight loss/gain etc?) Brain fog, itchy crawlies, worms (?) in nose, bites, burning skin, scratches appearing.
24. What did other doctors diagnose you with (i.e.: folleculitis? Scabies? DOP - delusional parasitosis)? No help from doctors. One derm thought I was crazy.

[Revelations21_4]

Originally Posted by Franky

Please answer as many questions as you can. We are hopping to find some common patterns among the answers.

If there are any other questions you want included, just send them to me. Also you might want to quote this post and then just fill in the answers.

1. State you reside in: California
2. Inner City? Suburb? Country? Suburb (Bay area)
3. Do you live on a lake, by the ocean or pond? No
4. Do you have city or well water? City. I drink mainly bottled Kirkland water bottles from costco and from a purifier water filter attached to the kitchen faucet.
5. Do you live in a heavily treed area? Yes
6. Age at onset: 21
7. Number of years affected: 1
8. Any other family members affected? No significant symptoms. I live with my father and brother.. I did notice my brother developing athlete-foot like symptoms and my dad has some slow-healing wounds on his arms but I am not certain it is morgellons and i pray to God that they do not get affected as well.
9. Your occupation at onset? aspiring to transfer to a university from community college/ part time high end fashion retail sales associate (have been on hiatus from both since month 2 of sickness..praying for life to be normal enough for me to go back again soon)
10. Do you own pets? Cat? Dog? Other? 5 yr old shihtzu whom i lived with 1 year before i got sick..she lives with my mom and neither of them show symptoms although ive spent a few nights there during my sickness.
11. Have/had you traveled to California, Florida or Texas? Europe? Other? I was born and raised in silicon valley, bay area of california. I've visited Seoul, Korea a few summers ago for 6weeks and I've been to vancouver for a few days 10 yrs ago.
12. Do you/have you garden, hike, camp or spend allot of time outdoors? The summer I got sick I spent at least 8 long 2-3 hour sessions sunbathing by the pool.
13. List your activities and hobbies. Guitar (recently picked it up, its very therapeutic and makes me happy thru this craziness), singing especially at Korean karaoke rooms, baking, working in fashion retail and helping people choose outfits, and spending time with my niece.
14. Have you used a public whirlpool or pool? Yes, at the 24 hour fitness maybe once after i got sick.
15. Please provide your medical history (i.e.: do you or have you had any other diseases? Cancer, Lyme, Thyroid, AIDS, other?). Genital herpes
16. Do you smoke? Yes. 1/2 pack/day since september 09
17. Any medications you have taken or are taking? adderall instant release 10mg/5x day
18. Do you drink more than 8 cups of coffee a day? none
19. As far as lesions, have you had more than 10 at a given time? yes during the first few months, i had at least 25 on legs, arms, back, backsides of hands, feet, face.
20. What part of your body did the lesions start? right leg, lower, inner calf area (2 "bugbites" appeared which itched and began to spread all over)
21. Is there any area that they are most prevalent? If so, where? left hand, right above my kneecap area, outer thighs, inner ankles
22. Is one side of your body/face more affected than the other (i.e.: left vs. right)? about the same, maybe a little more on the right side
23. Please list your current symptoms (brain fog? vision disturbances? fatigue? nausea? weight loss/gain etc?) nausea, fatigue, calcium excretions from scalp, puffy hard fingertips & toes, scaly soles of feet, itchy face, itchy dry-looking hair that needs to be washed twice daily and is soft for less than 2 hours and gets covered in fibers/film/wtv and becomes itchy on scalp and face causing acne, harsh mottling of legs when tired/cold and occasionally slight mottling on upper arms.
24. What did other doctors diagnose you with (i.e.: folleculitis? Scabies? DOP - delusional parasitosis)?

scabies (2x) - permethrin cream
allergies - antihistamines, topical anti-itch triamyclinone ointment + cream
contact dermatitis (did a patch test to find im allergic to nickel & slightly to wool but that obviously was not my main issue) - biafine emulsion, antihistamines
delusional parisitosis
bacterial infection (2x) -bactrim sulfa & cephalexin keflex -doxycycline
chilblains
asthma - albuterol inhaler, daily nasal sinus rinse, fluticasone propionate nasal spray
acne problems - retin A (broke out in rash)
bloodtests showed vit D defeciency - currently on week 6/10 taking 1 dosage of 50,000IU once a week. fatigue has died down slightly

please don't hesitate to email me for more information or any way i can contribute to help us all. thank you for starting this poll. proactive ftw

[beebee]

1. State you reside in - Texas
2. Suburb
3. Do you live on a lake, by the ocean or pond? When symptoms emerged lived next to big creek. Spent alot of time in Galveston 1981-1987 big blobs of oil floated to shore from offshore drilling. We also ate the fish we caught when fishing at the shore - don't recommend that anymore.
4. Do you have city or well water? City water but drink bottled
5. Do you live in a heavily treed area? Yes
6.& 7. Age of Onset & Number of years affected - Cant decide what was the 1st real symptom. Kidney venious malformation in 2002 @ 42yrs of age or after car accident and 1st lesion emerged in 2006 after MRI. Tick bite in 1974 only rememberance of ticks. Friends pulled out a microscope Halloween of 2009 and we figured it out ourselves, before then thought it was scabies or birdmites. At the time I was just having itching a few lesions. Did not start to see Fibers until 2010 then found fibers in urine, skin, hairbrush. Mostly after showering they come out of skin and look like fuzz ball and pull on it and has been as long as 8"
ND states have had for at least 10 years or more so no telling how long really affected, after having Mono in 1974 I got used to Chronic Fatigue. 2010 Blood would show up to 3 parasites in 1 blood cells, very thick like used motor oil. Now better after taking enzymes.
8. Any other family members affected? No
9. Your occupation at onset? Administrator
10. Do you own pets - Dog
11. Have/had you traveled to California, Florida or Texas? Europe? Other? Live in Texas and been to all the states and 9 different countries
12. Do you/have you garden, hike, camp or spend allot of time outdoors? Yes
13. List your activities and hobbies - Camping, travel, eating exotic cuisine/sushi.
14. Have you used a public whirlpool or pool? Yes and spent a week at the Guadaloupe/Comal River/Shlitterban in 1996 and after had episode where 1/2 my hair fell out after coming home.
15. Please provide your medical history - Mono in 1974, babies born 1982, 1986, blood in urine almost every other doctor visit and never explained, Kidney artioigraph for venious malformation in 2002, car accident 2006 broke pelvis, ribs, shoulder had MRI, 3 Cat Scans, 2 lesions and then started itching and felt like being stabbed with toothpicks in my calves. 2007 Fibromyalgia.2009 all hell broke loose......... Spring 2011 more under control and more predictable. Symptoms escalate at a full moon and when TOM visits.
16. Do you smoke? No
17. Any medications you have taken or are taking? Would take 5 pages to list them all: 1st tried NutraSilver Dec 2009-Feb 2010 but I turned into 1 big purple black bruise, tried several other internet remedies and then found 2 great ND's who got me on the right track with Cowden Protocol; Transformation Enzymes; Salt/Vit C; Borax, Baking Soda and 35% FGH202 in 1 liter water and drink 1 lter x 5 days then 2 days off; Zinc; Skin maintenance 2% iodine on new lesions seems to shorten episode, then use Morgone alone or mixed with Neosporin pain relief with a bandaid until it stops producing; Grapefruit seed extract and also mix into Palmers skin oil to coax out the debri and start healing up. Arnica Gel to help with the ones that turn blackish but only time will fade the really dark ones that look like blood blisters. When bad lesions the Salt/Vit C & Mucinex also helps to push out the lesions faster. Far Infrared suana 3x week (225.00 portable one off the internet not that expensive one this was what could afford and has helped, took 3x before my system would actually sweat, also helps lesions heal faster alternate with Ebsom salt and peroxide baths.
18. Do you drink more than 8 cups of coffee a day? No
19. As far as lesions, have you had more than 10 at a given time? Yes but they are all different. Some are pools of sticky liquid that dries and has consistancy of liguid nails, others silicone warts, some come out as green blobs then know need to take colloidal silver; some are like Pez Dispenser and these seed like things come out, and keep coming out.
20. What part of your body did the lesions start? Torso
21. Is there any area that they are most prevalent? If so, where - Arms, Face and Legs
22. Is one side of your body/face more affected than the other (i.e.: left vs. right)? Right - Also note I sleep on my right side (blood pools?)
23. Please list your current symptoms - Weight loss of 20lbs, brain fog, fatigue
24. What did other doctors diagnose you with (i.e.: folleculitis? Scabies? DOP - delusional parasitosis)? Scabies

Been in treatment with 2 ND's for a year. Now much better and back to having lesions that are smaller and less frequent, fewer fibers. Still have a way to go. Taking CD57 test to check progress. 1st one scored 48 in April 2011, goal is to get it over 60 and stay there. Have not taken long term antibiotics.

Also note I am of German and Dutch descent - I do think DNA has something to do with suseptability. Texas has a large German population.......