newbie coming out/watch your toes

[tuppence]

hello group,

I just spent the last couple hours reading through a few threads on this site and the FAQ then signed up. I apologize in advance for any comments or questions that the older members may feel has been discussed to death and back again. This is my second foray into a discussion group; my first was a SF Bay area yahoo group last winter where I got zero responses, after 6 weeks, I quit it. This one seems much more active and caring, so here goes.

I have experienced the threads since January 2005 and only found out last September that it was a widespread phenomenon. Aside from my initial 3-week episode, I believe I have not suffered from the effects of the threads, that their recurrence has been a minor annoyance. Until 2 months ago, when it seemed to be getting out of my control, I had not reported it to any doctors since the first time was chalked up to DOP. So far, my primary doc is pretending to have an open mind, dermatologist quite frankly says it's all self-excoriation and my neurologist thinks it's delusional but is remaining aloof. Dentist, on the other hand, is extremely interested. I developed a sticky, stringy mucus in my mouth she could not explain, and I subsequently found it ebbed and flowed coincident with thread activity.

I thought I had discovered a most effective deterrent in golden seal, which I have used for 40 years to fight every other type of infection, so far it works well, but I was greatly disturbed recently when I re-opened a capsule one day to sprinkle some powder onto an active spot only to find a thread cluster growing and living inside the capsule! [10X video available]

I would like to join the discussion currently running on theories but need a couple days to get through the postings. my computer time is frequently limited by health status [fairly advanced Parkinsons] so I may be sporadic in posting and slow to respond.

cheers

[Kritters]

Wow! Awesome new blood! Welcome, 2 pence! Please don't be turned off by the nastiness. We've had more of that in this one week than for the entire life of the forum! But we'll straighten it out.

Sorry you have parkinsons. A friend of mine was diagnosed with it and after googling it, I don't believe she has it. I do believe the doctor turned to page 26 and decided she did.

Looking forward to your input.

Kritters

[-----------]

Hi Tuppence, Welcome!

We're looking into Oral Myiasis... and think this might be a link... hopefully, someone will start a thread on this subject soon?

Tell us a little about yourself?

[tuppence]

a bit about myself: 61 y.o.retired former accountant and current working artist - you can see my stuff at out-of-the-frameworks.com - dx of parkinsons 2 weeks before the 9/11 attack in 2001. there is no actual test for parkinsons - they make a tentative diagnosis based on symptoms, give you anti-parkinsons drugs for a couple weeks and if you respond favorably, yep, you got parkinsons alright. one or more of the meds has a 30% side effect of hallucinations so you can see why I originally accepted the DOP label when this came up 4 years into the PD regimen.

It's a funny disease, causes many of the same symptoms and pains credited to morgellons, and I find movement disorder specialists are much more open to accepting the broad effects than are regular neurologists who cling to more finite definitions. In the end, they don't really know that much, which is what made me skeptical of the medical profession's official take on the threads. Keyholes everything quite neatly if you sweep all the symptoms together and slap a label on it. I love the irony that one of the defined symptoms of DOP is the patient doesn't believe his doctor when the doc says there is nothing there.

I'm unable to walk unassisted, I use a rollator - 4 wheeled walker with a seat - and go everywhere by bus. it amazes me that people will move out of the way for a wheelchair or power scooter, but they seem to think I'm pushing a shopping cart instead of a mobility assistance device and resent giving way, hence my call out 'Watch your toes' seemed appropriate in an intro here as well.

I've been referring to this as 'the threads' for the past 4 years and cant quite bring myself around to 'morgies' or other names. anyone who knows SciFi books about Pern? it's for those threads, not what's in the sewing cabinet.

That oral myasias ... I never heard of, looked it up, ugh! fly larvae? no way is that the mucus I mentioned. this gooey white mucus I have found many questioners on health sites describing much the same thing and lots of speculation [probably ..., could be ..., sounds like ...]but no one has a definitive answer. havent come across any suggestions that it might be morgellons, I would not have thought it related myself were it not for the timing in the past few months and pulling threads from my tongue during that time

I'm also a mother of 2 [d-40, s-38] and grandmother of 2 boys + 2 girls ranging from 23 to 8, none of whom live with me. and then there's Oliver, my scottie dog age 3, who also has varying levels of thread activity, but dissimiliar to mine.

I think I may be rare in these groups since I am not suffering from the threads, could ignore the occasional faint sensations if I wanted to, but I am too curious to leave it alone. For 4 years, bits of threads surfaced every once in awhile, maybe a couple of days every couple months until last October when the pattern changed, repeating something that had occured only once before, on the last night of my initial episode, something that fully prepared me to accept it as hallucinatory for 2 reasons: 1) it stopped after that night and 2) it was too fantastical and seemed totally different from the mundane vari-colored fibers which soon reappeared.

But my hope/expectation that this would last only one night was not met; it went on for 7 months, went away for a month, then 3 days on, 2 weeks off, etc. The sticky mucus started up around February and has since come and gone same time as this other thread activity which would have been barely noticeable except for one small lesion that I decided to investigate.

before I launch into further detail and exceed my computer time limits for the week, I would like to find the best direction to take. I have been researching for awhile and not found any reports resembling what I witness though I have seen many still pictures of threads that look like these -'twisted ribbon' shapes go on to sprout gnarly barbed-wire that embeds in the skin and tissue.

what forum area would you suggest for comparing observations and descriptions of the threads? I try to separate objective observation from theorizing and drawing conclusions, but it is difficult, and I suppose that holds true for most people. I've been skipping around here, but the subject lines dont always match the content and a lot meanders.

[Sadsack]

Tuppence -

There is a "Pictures" forum on this board that you might want to spend some time in. Forewarned: there are pictures of many things that you will probably say "no way Jose" - but it seems there are different manifestations with different people, and at different stages. Could be dependent on geographical area (and what is encountered in the environment) or even genetics. Just ignore things that don't apply.

Another thing I would like to mention is that there is some probability that your PD may be Morgellons related. There seems to be a much higher occurence of neurological diseases with people with Morgellons (I've been diagnosed with MS). Not sure if that does you any good to think about; just pointing it out.

Oh - and what Kritters said - please forgive our bad manners over this past week. We aren't usually so naughty.

SS

[Jo]

Welcome Tuppence!

Good to have you with us. Were you an avid gardener? I read an article about some research linking gardening and PD.

Looking in the pictures area is a good starter, I'll shout when I've found good fibre 'threads'.

Jo

[mmarsha]

Originally Posted by tuppence

hello group,

I just spent the last couple hours reading through a few threads on this site and the FAQ then signed up. I apologize in advance for any comments or questions that the older members may feel has been discussed to death and back again. This is my second foray into a discussion group; my first was a SF Bay area yahoo group last winter where I got zero responses, after 6 weeks, I quit it. This one seems much more active and caring, so here goes.

I have experienced the threads since January 2005 and only found out last September that it was a widespread phenomenon. Aside from my initial 3-week episode, I believe I have not suffered from the effects of the threads, that their recurrence has been a minor annoyance. Until 2 months ago, when it seemed to be getting out of my control, I had not reported it to any doctors since the first time was chalked up to DOP. So far, my primary doc is pretending to have an open mind, dermatologist quite frankly says it's all self-excoriation and my neurologist thinks it's delusional but is remaining aloof. Dentist, on the other hand, is extremely interested. I developed a sticky, stringy mucus in my mouth she could not explain, and I subsequently found it ebbed and flowed coincident with thread activity.

I thought I had discovered a most effective deterrent in golden seal, which I have used for 40 years to fight every other type of infection, so far it works well, but I was greatly disturbed recently when I re-opened a capsule one day to sprinkle some powder onto an active spot only to find a thread cluster growing and living inside the capsule! [10X video available]

I would like to join the discussion currently running on theories but need a couple days to get through the postings. my computer time is frequently limited by health status [fairly advanced Parkinsons] so I may be sporadic in posting and slow to respond.

cheers

Hello Tuppence and welcome and I agree with kritts about the negative flow on certain threads and I don't have time for that, I am looking for a cure. I will be avoiding these threads from here on out. I think they should be shut down in fact due to things or should I say due to the words that are very nasty and hurtful to people being throwed around, how about you Kritts?? this isn't the ordinary is it??? anyway welcome, I am kinda of a newbie too and could you put a link for the pic or video, I would like to see it.
mmarsha

[mmarsha]

Originally Posted by Jo

Welcome Tuppence!

Good to have you with us. Were you an avid gardener? I read an article about some research linking gardening and PD.

Looking in the pictures area is a good starter, I'll shout when I've found good fibre 'threads'.

Jo

Hello Jo,
I know you asked 2-pence this question but I am interested in the article about gardening, could you please post url or link as I was an avid gardener, now I am afraid to go out because every time it seems like this year especially after I came in from working out there that I was being eat up by ??? anyway I appreciate any info for url
THANKS JO
MM