Twenty Questions

[Mat]

Hi everybody. Here are some questions for everybody. Please feel free to answer as many or as few as you like, or none at all for that matter!
Thanks a lot! - Mat


1. Briefly explain your very first symptom that you were aware of? E.g. chronic fatigue, crawling on legs…

2. Do you recall these initial symptoms were precipitated by/triggered by a trauma or other stressor?

3. How and where did you first hear about Morgellons?

4. How long is it since you first experienced your first symptom?

5. Are your symptoms ‘constant’, ‘inconstant’ and/or ‘cyclical’? Is there a set pattern to their recurrence?

6. In your own personal opinion where do you think Morgellons originates? Chemtrails, GMO food, etc?

7. Do you instinctively/intuitively feel you will beat this illness?

8. Have you ever tried colloidal silver/nutra silver? If so, what were the results??

9. Do you think you may have caught this disease from another person? Do you think another person(s) may have caught it from you?

10. Do you think Morgellons could become a disease of epidemic proportions? Could this be a new worldwide ‘plague’?

11. Is your current doctor/medical practitioner being helpful?

12. Have you ever attended casualty and emergency at your local hospital when your symptoms have become unbearable? If so, what was their reaction?

13. Would you describe yourself as being ‘anti-authority’ to any degree? Have you ever been involved in any type of ‘political activism’?

14. Have you ever felt that you have been tracked or monitored? For instance, was there any time you felt that your landline telephone/mobile has been tapped? (Some sufferers have reported this)

15. Have you ever had the sensation of an ‘electronic-like' bleep sound go off inside your head?

16. Have you suffered visual hallucinations as in things flying or moving across your periphery? Not ‘eye floaters’.

17. Has your vision deteriorated since the onset of your illness?

18. Do other people sometimes itch when they are in close vicinity to you?

19. Have you ever contemplated suicide because of this disease?

20. Is there any ‘positive effect/outcome’ that this disease has given you?
.

[carla]

1-)crawling on legs

2-)no

3-)Internet

4-)over 5 years

5-)some pattern

6-) a Government Lab somewhere

7-)sometimes

8-)No

9-)Yes

10-)Yes

11-)NO

12-)No

13-)a bit

14-)once

15-)yes

16-) I ve seen this but it wasn't a hallucination

17-)Yes

18-)Yes

19-)Yes

20-)I'm no longer vain

[ladycolorado]

1. Briefly explain your very first symptom that you were aware of? E.g. chronic fatigue, crawling on legs…
The scalp was where I first had the biting, the stinging the fibers.

2. Do you recall these initial symptoms were precipitated by/triggered by a trauma or other stressor?
Yes. I had head lice which served as initial vectors on my scalp. 6 back to back head lice infestations, two with snow fleas mixed in, then a third unknown insect infestation (a winged flying insect which flew and bit) 8 infestations total. An infested parrot quite possibly brought the black specks into my home.

3. How and where did you first hear about Morgellons?
This message board I joined three days after I had this disease full blown sometime around October 2006. I have just recently returned (I was a member on here when there were a scant ten members ). I also learned of the disease on morgellons.org which I am a registered case on there with the Morgellons Research Foundation and also OSU.

4. How long is it since you first experienced your first symptom?
I rid myself of the majority of these symptoms with treatment baths in the beginning and an antibiotic treatment protocol with an isonazid 4 month course and also sporadic bursts of ivermectin over the last two years. To keep my hair normal aside from the medicine now I wash it with Palmolive Oxy Plus Dish soap, Dr. Miracle's two in one shampoo, and I dye my hair once every 3-4 weeks to be able to grow it out finally lesion free after two years.
5. Are your symptoms ‘constant’, ‘inconstant’ and/or ‘cyclical’? Is there a set pattern to their recurrence?
My symptoms are "cyclical" in the sense that I suffer the worst the day before my period being a female with Morgellons Disease. Minor shedding, muscle pain, tiny lesions on the face and mood seem to suffer the most at this time for some reason.

6. In your own personal opinion where do you think Morgellons originates? Chem trails, GMO food, etc?
I believe that contamination of the environment occurs on many levels. This disease is zoonotic as well both my collies had it and the infected parrot my roommates had which brought it into my home.

I have seen clothes in stores select items which have the fibers in them and are infested. I have heard of people and furniture being infested many times. I gardened alot some say it is in the dirt too. I think this stuff is all over the place I no longer worry about it just keep an eye out.

Chem trails from jet fuel are a possibility because these fibers have been found in the residue of jet fuel. I lived in Colorado near two air force bases and also NORAD a military installation. The sky was filled with these trails there and the insects were more aggressive there. Where I live now there are no military bases here and the insects act more like insects should.

Agrobacteria, mycoplasma, and fungal Candida system wide also are factors which occur along with Morgellons Disease.

Regarding gmo food I have sensitivities to such things. In particular cheap cows milk with hormones that are modified as well. I cannot drink it anymore it makes me very sick. I drink goat's milk instead. Some foods which still hold nutritional value I gained tolerance for by ingesting water & either something green and good or meat. You have to gradually work you way up with the "offending" food.

I have talked to around 300 of the sick worldwide at varying stages and quality of treatment, and different strains of infestation. Some involve insects some do not.

I also had the chair of the Morgellons Research Foundation, Dr. William T. Harvey as my former doctor. I talked to him about an hour my first doctor examination and also later asking questions on phone consultations as well. He is a true crusader despite what people think and say.

He claims that Morgellons Disease is a combination of factors: Toxic exposure of some type, genetics, Lyme disease, Chlamydia Pneumonia as an underlying cause which knocks out the macrophages in the immune system. He told me my first visit that the person to person contagion is nil. I think it is more environmental and also that people have components of this disease already.


I have talked to Marc Newman (around 3x on the telephone) who has developed DSP and who has a website, The head of Morgellons USA once on the phone and in emails, email correspondence and chat with the current head of the renamed Charles E. Holman Foundation (and the former head Chas Holman (it used to be called the New Morgellons Order) in 3 emails a mere month before he died.

I have also talked with the former doctor Schwartz on the phone when he practiced in Florida personally 3x.

I know the head people on another prominent Morgellons Disease support board. I also belong to a Morgellons group which is less active but I have posted information on there and given support to sufferers on there as well. I talked to one person researching the fibers (not Wymore) once on the phone. I have talked to heads of different Local Lyme groups and websites both on the phone and private mail.

I know people with the disease who are medical and some who are not who are just friends (not people treating those with Morgellons Disease but who I talk to). One of my friends (who I talk to regarding my situation as just friends) knows natural medicine well. He mainly sells stones now to gemstone dealers. I have also written a person who runs a UK Morgellons site.


I have talked to the newly infected, the pregnant, and many sufferers who have become completely disabled from this disease. I know many people who have had this disease for 20+ years. The longest sufferer I know I have have spoken on the phone to has had the disease 28 years. I have talked to those who are destitute and able to do little (those people we MUST fight for) and for those who have found doctors with varying degrees of success. Also those who have tried to find doctors and who have been turned away and been grossly overcharged. All different kinds of situations there.


7. Do you instinctively/intuitively feel you will beat this illness?
I am not sure if I can be cured. My current goal is 100 percent remission. I know this is possible because I did indeed have two days of this it was like getting a fresh gulp of air after being underwater too long. If we could stay like that it would be wonderful. I shall never give up researching to see if we can achieve this.

I almost got into a vaccine trial for the Clamydia Pneumonia vaccine, which all animals and people who get this vaccine are cured in 7 days supposedly. The first clinic I went to closed I missed my chance.

Deep in my gut I feel like some day this disease shall be lifted from me. I will never stop fighting to at least let other sufferers have an improved quality of life and I freely give time for support as well. This is how I learn new information. I do also think to some extent we have to adapt on some levels and to build up the body to be able to function well.

8. Have you ever tried colloidal silver/Nutrasilver silver? If so, what were the results??
No. Simply because the person treating Morgellons Disease was concerned about it not leaving my body and also because I take alot of traditional medicine with good results.

I do have friends who use colloidal silver with good results. Nutrasilver is a grossly overpriced product and that site makes false claims about "curing" us. It is on failed treatments for this reason. I dislike those people they use scare tactics and have no qualms about taking advantage of the sick. Some people like this product. I share Franky's (the administrator's) Opinion regarding Nutrasilver. I have not ruled out silver as a possible future treatment option.

[ladycolorado]

9. Do you think you may have caught this disease from another person? Do you think another person(s) may have caught it from you?
No. I think the organisms were brought into the home do to an infected parrot and or/clothing items/contaminated items they (my former roommates had.

I did isolate myself completely until I had my first patient visit with Dr. Harvey (my former doctor) who is chair of the MRF. He told me it was a combination of factors and that the person to person contagion was nil. I have made no one sick. I shall add I am a very social person.

I do think if your home /body is highly infested precautions should be taken. Also around those who seem to be "sensitives" like Mat stated.

10. Do you think Morgellons could become a disease of epidemic proportions? Could this be a new worldwide ‘plague’?
Yes. I think this is also because many people unknowingly have it and do not even know because it is not "full blown" yet. Also because of the CDC paper talking about a High Virulent Clone Variant Of Lyme Disease which can use ANY insect, arachnid which has an exoskeleton as a vector.

If Dr. Harvey is correct that Chlamydia Pneumonia (walking pneumonia) , THIS component is contagious although I am sure most of the world has this already. This pneumonia has been linked to many incurable diseases. Mold has been as well. I also believe that the Morgellons "organisms and structures" are widespread in the environment on many levels.

By the time something is done, I think at least 90 percent of the world shall have it. Since this disease is treatable quarantining us would both be unnecessary, inhumane, and inefficient. Besides as nasty and systematically efficient Morgellons is about breaking a person down, it it WAS purely person to person the whole world would already be infected.

11. Is your current doctor/medical practitioner being helpful?
Yes at least in my case. I must say they have been doing a great job. Although I am seeking back up options/ other people to see because I shall have to travel 1100 miles 3x a year to have continuity of care and monitoring.

I take a calulated risk however. If I do not receive competant traditional and/ or natural care my disease is well controlled but very bad. Without care my motor functions/skin/cognitive function will regress severely. Before I received medical care I was rapidly on my way to becoming crippled. This is a serious concern of mine.

12. Have you ever attended casualty and emergency at your local hospital when your symptoms have become unbearable? If so, what was their reaction?
Yes. It was a local ER in Colorado. I did not even know what Morgellons Disease was. My experience wiuth them was akin to being raped the feeling of disrespect and violation I had. I thought I had bird mites. I did not bring in any "samples". I did have twenty lesions on my neck, joint pain, peripheral neuropathy so severe that my feet swelled from normal size 8 to a size ten. All of this was ignored.

I had no curtain partition for privacy I was parked in before the front desk all night with six security guards standing around me and the whole ER staring at me like I was a sideshow freak. I had blood drawn, a urine test and a shot of morphine which knocked me out until the next day.

I NEVER even saw a doctor. I saw a male nurse only. I was told the lesions were self inflicted and that I was "fine". I sat silently before a social worker and listened mainly. I was released and on my ER form it said "abrasion" as my diagnosis. Then I returned home to "rot". All to the tune of around 6 thousand dollars. The next day my right knee swelled and a bullseye rash appeared the next day on my right inner arm and it stayed there for like a week or two. It was not until some days later I found M-D-R.

13. Would you describe yourself as being ‘anti-authority’ to any degree? Have you ever been involved in any type of ‘political activism’?
No. I do think health care is being ruined by insurance companies and pharmaceutical industries. I think many doctors think that if a diseases not in the textbooks it does not exist. I do believe Lyme Disease and it co infections are being undiagnosed in time, not properly tested for and the disabilities that follow are being ignored as well. It comes down to an issue that insurance companies do not want to pay. Also that many of the newer pharmaceuticals seems to be designed more for profit than wellness of the patient.


There ARE good people in the government, scientists, researchers, and doctors who ARE wanting know more about what Morgellons disease is really doing to people and how to combat it whatever it's cause. I am no threat anyway. I just post information and I give support.

14. Have you ever felt that you have been tracked or monitored? For instance, was there any time you felt that your land line telephone/mobile has been tapped? (Some sufferers have reported this)
Once this could have possibly happened. It also could have been some marketing people although that seems unlikely with the circumstances. I do not care to elaborate on the details of what occurred.

It was strange. I have also had on one support site had reporters and people ask questions about me. People who the people running the site said they did not seem like they were sick but more nosing around. I really do not know what is the truth regarding the "incident" and people asking questions about me. Nor do I care.

15. Have you ever had the sensation of an ‘electronic-like' bleep sound go off inside your head?
Not in my case. I found treatment 4 months after the disease was full blown. Before that I did topical baths, decontamination of the environment and naturals before that early on to slow the progression of the disease as best as I could. I was lucky to find this board 3 days after this disease was full blown and to find helpful people on here. Yes I was that miserable and sick.


16. Have you suffered visual hallucinations as in things flying or moving across your periphery? Not ‘eye floaters’.
No.

17. Has your vision deteriorated since the onset of your illness?
No. The treatment baths, early treatment, and also finding simple solutions to safely reclaiming my orifices (sorry about that sounding indelicate) helped me to retain my 20/20 vision and normal hearing.

18. Do other people sometimes itch when they are in close vicinity to you?
No. Only in the beginning and only some individuals which seemed "sensitive".

19. Have you ever contemplated suicide because of this disease?
No. I knew even at its worst I wanted to live. I knew I did not want to stay as miserable as I was. I talked to alot of people and researched to find solutions to improve my situation. This is WHY I came back to this board and why I do what I do.

I do NOT want people to think that is their only option. It is NOT! This disease IS treatable albeit not curable. It just takes time. You CAN improve to where you can have a mostly normal life. There are MANY good people who care, both in here and elsewhere.

20. Is there any ‘positive effect/outcome’ that this disease has given you?
Yes. Regaining function after impairment it almost seems like in some ways my mind works better now as strange as it sounds. My ability to set problems aside for later is a necessity. So is positive thinking.

I often do other things I do not devote all my time to this disease but with other activities and hobbies. Laughter and music are some of my dearest friends. I think that empathy and fortitude, mental strength are much greater now due to the adversities and hard decisions changes I have faced.


I also wanted to add Matt this is the most comprehensive set of questions regarding Morgellons Disease I have ever seen. Thank you. If you are this intelligent with the disease, you must have been REALLY smart before the disease. Thanks for posting.

(LC)

[hilly]

Hi Matt... Here are my answers. I'm intrigued though that you decided to do this questionaire which seems to be of little help to you in your present pretty desperate state... This seems to be more of a research questionaire but I hope you find some help from it or has someone else asked you to do it by any chance ??

1) Crawling, itching biting all over.

2) Had a lot of stress so could have been.

3) Internet

4) 2 years

5) Fairly constant.. worse at certain times ie full moon. Stress and tiredness.

6) In my case fairly sure agrobacterium and chicken mites...

7) Hope so one day.

Both.. colloidal silver was a help.

9) No and No, I hope not.

10) Quite possibly

11) Yes.

12) No.

13) No

14) No

15) No

16) No

17) Yes

1 Yes they used to not now.

19) No

20) No

Don't know why the smileys are there, nothing to do with me ...;>) lol

[hilly]

Hi again Matt. Questions to you above, do please answer..

[Kritters]

Hi Matt,
1. Briefly explain your very first symptom that you were aware of? E.g. chronic fatigue, crawling on legs…

This is difficult for me to do because, looking back, I've had some symptoms similar for several years before they all took place together. About 3 years ago, after clearing out weeds and ornamental grasses....and using roundup (which I got on my skin) I felt a biting under my skin on my upper arm and thought it was chiggers. I had them many years ago and got rid of them with nail polish remover. Then came the chronic fatigue and some lesions, although on my forearm rather than upper arm.

2. Do you recall these initial symptoms were precipitated by/triggered by a trauma or other stressor?

Yes definitely. A major personal stressor.

3. How and where did you first hear about Morgellons?

After going to an infectious disease doc who was clueless, I decided to start googling what could be the cause of my skin lesions and this forum popped up.

4. How long is it since you first experienced your first symptom?
About 2.5 years.

5. Are your symptoms ‘constant’, ‘inconstant’ and/or ‘cyclical’? Is there a set pattern to their recurrence?

inconstant and cyclical for some (lesions) and constant as far as energy level being lower, fatigue after physical exertion.

6. In your own personal opinion where do you think Morgellons originates? Chemtrails, GMO food, etc?

Difficult for me to conclude or distinguish at this point. Chemtrails would not surprise me to be cause at all. GMO foods a good possibility as well. Possibly both as well as exposure to mold in my home, and roundup on my skin. These could be enablers also.

7. Do you instinctively/intuitively feel you will beat this illness?

Yes I do. I have an appointment Thursday to begin Bioset treatments and an appt. Monday with Lyme specialist.

8. Have you ever tried colloidal silver/nutra silver? If so, what were the results??

Yes and I believe silver helps as an anti-bacterial, but can't cure all.

9. Do you think you may have caught this disease from another person? Do you think another person(s) may have caught it from you?

No and no.

10. Do you think Morgellons could become a disease of epidemic proportions? Could this be a new worldwide ‘plague’?

yes. and yes.

11. Is your current doctor/medical practitioner being helpful?

we'll see.

12. Have you ever attended casualty and emergency at your local hospital when your symptoms have become unbearable? If so, what was their reaction?
no.
13. Would you describe yourself as being ‘anti-authority’ to any degree? Have you ever been involved in any type of ‘political activism’?
Yes, I'm anti-authority if there is a good reason. I was never an activist until now.

14. Have you ever felt that you have been tracked or monitored? For instance, was there any time you felt that your landline telephone/mobile has been tapped? (Some sufferers have reported this)
No, but I wouldn't be surprised.

15. Have you ever had the sensation of an ‘electronic-like' bleep sound go off inside your head?
I don't think so, but I have so many sounds going on (as I posted to you) I may not be able to distinguish that sound.

16. Have you suffered visual hallucinations as in things flying or moving across your periphery? Not ‘eye floaters’.
No.
17. Has your vision deteriorated since the onset of your illness?
It's actually improved (lol)

18. Do other people sometimes itch when they are in close vicinity to you?
Not that I have noticed.

19. Have you ever contemplated suicide because of this disease?
yes.

20. Is there any ‘positive effect/outcome’ that this disease has given you?

Only that my knowledge of alternative medicine has increased.

Kritts
.