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The Fiber Disease

Human Anatomy, Physiology, and Medicine. Anything human!

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Postby befour » Sat Apr 08, 2006 7:42 am

TamTam,

In reference to your last post.....would it have involved the UK, Glascow and Aberdeen?

Take care-

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Postby Doc44 » Sat Apr 08, 2006 1:47 pm

A GENERAL STATEMENT CONCERNING MORGELLONS DOCTORS:

Quite often when some doctors first encounters a morgellons patient they are puzzled and research the condition and probably end up contacting MRF starting a dialogue. They sound good and trustworthy probably. But after additional researching and not being able to help patients they have a mind change, develop the Schwartz Syndrome and run to protect themselves from investigation and possible loss of license.

Doc44

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Postby Linn » Sat Apr 08, 2006 2:05 pm

yetagain:DO have at least some aspect of "fiber" manifestation. That is all i mean, and meant to convey. For me, it is the eternally intriguing factor, and one that deserves intense focus.

This is very true.

you are corret every one does
have fibers of sorts. Myself included. They are perhaps a product of the bacteria. :?: :?:
That is the theory I have read here that makes sense to me.
What are your thoughts on that?

But again in RE to the origin. If the CDC gets involved in the future, they will want to trace this. Do you agree??

Take Care,
Lynne
"How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving and tolerant of the weak and strong. Because someday in life you will have been all of these".

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Postby Linn » Sat Apr 08, 2006 2:27 pm

Doc:and run to protect themselves from investigation and possible loss of license
.

I am no attorney, however I have talked with some who
assure me that a doctor will not loose license unless they
"do harm"

I just do not understand what the fear is?
At least my dermatologist is taking me seriously.
And the immunologist can see there is symptoms
associated with neurological/immune system dysfunction.

But, they are not afraid to admit that they do not know what it is.
But for the time being, they can at least give the patient the benefit of the doubt. When doctors started to believe me, I was at least, encouraged.

Next step, is a biopsy of a fresh irruption,
which I am hoping I do not get.
At least the reults will be on record,
until a time when they can ID this unknown organism.

There are strange things out there that have not been identified.
For example, when I was in school a few years ago, I found a
strange thing that came out of my faucet. I could not ID it.
I brought it in to my
biology prof and he didnt know what the heck it was either.
He then showed several collegues and they too were stumped.
He suggested I call the health dept. And they didnt know what it
is either...... nor did the water dept. So there is some unknown, weird organism in the water. :x :?: :?:
"How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving and tolerant of the weak and strong. Because someday in life you will have been all of these".

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Postby in_the_uk » Sat Apr 08, 2006 7:08 pm

"First hour guest Dr. George Schwartz of the Healing Research Institute shared his research into Morgellons Disease,.....After culturing a sample from one of his patients, a bacteria that was a variant of Pseudomonas was discovered.

......He was able to greatly reduce the symptoms in the woman who had the bacteria by giving her high doses of a sulfa drug, he added." http://www.coasttocoastam.com/shows/2005/02/21.html

Has anyone gone down this route.. Pseudomonas then sulfa drug?
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Postby Linn » Sat Apr 08, 2006 9:28 pm

HI Helen,
did you see that show?, I missed it, and was going to
resister to stream link but never did it yet.

I havent been treated as yet, because
my docs have yet to do a biopsy or take samples.
"How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving and tolerant of the weak and strong. Because someday in life you will have been all of these".

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Postby Sabrina » Sat Apr 08, 2006 9:44 pm

Dear Helen,

I made a mistake about the product recommendation for the mill man. Sorry. Tell him I meant this stuff.

Tim-bor® (Timbor) is an insecticide, fungicide and wood preservative for the protection and treatment of lumber against fungal decay and wood destroying insects. Tim-bor® is a water soluble, inorganic borate salt with insecticidal and fungicidal properties. It is an effective treatment for wood to kill and prevent infestations of decay fungi including white rot, brown rot (i.e. Poria) and wet rots. Tim-bor® is also effective for the prevention and control of wood destroying insects such as Subterranean Termites, Drywood Termites, Dampwood Termites, Powderpost Beetles, “False” Powderpost Beetles, Deathwatch and Furniture Beetles, Old House Borers, Carpenter Ants, and Bark and Timber Beetles.

Tim-bor can be used as a Dust, Liquid, or Foam. It is water soluble, economical, odorless and can be used in conjnction with fumigation for residual protection. It is formulated with a concern for the environment.

http://www.domyownpestcontrol.com/timbo ... p-144.html


Dear Linn, and Standby,

We have been turned away time and time again. The latest thing that has happened is that the doctor who was treating me at the health department has now said that I would best be served elsewhere for further treatment. ELSEWHERE?? Where else can I go now? He suggested that I see Dr. Schwartz and I don’t have the resources to travel across country.

Dr Schwartz…. The same man his colleagues persecute. Interesting!

What do you do when the director/doctor of the health department in a major American city is clueless about what you have going on in your body? Why is he afraid to continue treating me? What is going on? Why am I being casted out? This is abnormal behavior from professionals and there is a consistent recurrent pattern to it. Why? This is just one more bizarre manifestation of this disease.

Once again I affirm, never have I received a referral to seek mental help in this whole journey so far, knock on wood! My medical records back up my reality check for this. But I will admit I am experiencing a bit of post traumatic stress from being fired from all of these doctors because they are too scared to treat me!

Perhaps tamtam is correct about seeking legal counsel. Don’t have the money or energy for that either, but I guess I am left with little option. Great, I must now become a lawyer too. My question is will it get me any closer to getting treatment for us? That is my deciding factor and a question I do not know the answer to.

Dear Cilla,

“Tam tam's posts and video mention something about bird technology, and a bird species being incorporated, respectively. I do not think he has ever actually said that feathers could grow on people as part of this 'stray target' infection, or if he has, I have not seen this.”

No, you are correct, tamtam never claimed this. Is it possible they are just fibers that resemble feathers? Absolutely! However I have no knowledge of any chemical makeup to confirm this. This cannot be ruled out.

I promise you Cilla that we will all be more mindful of how we address those people who genuinely want to help us. This is often obscured for us due to feelings of betrayal from being lied to but in no way should be used as an excuse to disrespect any one this forum. I promise to take a stand should this behavior continue.


Thanks for the compliments London
and I’m happy you’re doing better!

I am just using a regular video camera I bought at Best Buy a few years ago, the zoom works great.

Dear Randy,

I can only pray that it is Michael Moore making this flick! “Sicko” I believe he is calling his next film. All about health care horror stories, how convenient.



Peace,
Sabrina
Last edited by Sabrina on Sun Apr 16, 2006 3:27 am, edited 2 times in total.
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Postby Sabrina » Sat Apr 08, 2006 10:03 pm

Dr Wymore has evaluated tamtam’s video and pondered his theory. His conclusions are posted here.

http://www.morgellons.org/rwupdate.html


I wish to thank Dr Wymore for his time and input into deciphering this most important issue. However, this release of facts and opinion has raised more questions than it has in answering them. Thank you tamtam because this is more information I have seen MRF touch on in a whole year combined!

"Since fairly poor labs and even college teaching labs can sequence large stretches of DNA, there should be no reason that the maker of the video cannot do so. Such work is inexpensive and easy. It is also CONVINCING and NOT subject to interpretation."

This tells me that MFR should have “no reason” to not already have this information as well, right? Dr Wymore says it “is inexpensive and EASY.” I do not really know, perhaps I missed this release of information. Does anyone else know?

"A fragment of sequence can be submitted to the global database search engines and will be either human, or mouse or rat or cockroach or whatever species it came from."

So, what has the Morgellons fragment been determined to be??? It should be pretty easy and inexpensive to get this information, right? Perhaps I missed this information as well. ????

"There was a time, well over a decade-and-a-half ago, when DNA sequencing was difficult, time-consuming and expensive. Now it is cheap and accurate. There is no reason not to use the ‘gold-standard’ of DNA sequencing to identify this supposed, engineered organism."

I would love to ask the good doctor about this cheap and accurate technology he speaks of. I see “no reason” why this has not already been done. Do you? Maybe it has? Who knows? We don’t.

"Availability of the organism’s DNA or RNA should not be a problem. When properly handled, the DNA and/or RNA from just one single cell should be enough to amplify and then sequence."

If this, “should not be a problem” what is the answer? Does the good doctor have one? Who can answer this? I lack the information. ????

"Hopefully, if the maker of the video feels that he has information regarding the cause of Morgellons Disease, then he will perform the necessary, proper and fairly easy experiments so that this information can be shared with other researchers. Just as with many things in life, talk is cheap."

Well I’ll be. Who knew that these experiments are “easily” done? We wouldn’t have known this before. I thought this was going to be hard, what do I know? Thank God this is so easy for them. Should speed things up do you not agree? ???

Sharing information with other researchers????? Why in the world would tamtam even be bothered with suffers to begin with? None of us are researching anything, right? Could the good doctor be out of touch? Perhaps he is only intrigued by the actual organism. If this is the case then I would love to see MRF delegate a position to address the sufferers and share with us as well as other researchers. Is that a lot to ask? ???

Talk may be cheep but in this case silence is not golden either. This silence creates a negative space that can be filled with all sorts of things and this is dangerous in my opinion.

"One must not only ‘talk the talk, but must also walk the walk’."

MFR was created for Morgellons sufferers. It is a tax free organization and belongs to all of us. Do you feel like a part of this organization? People repeatedly ask to help them in any way they can. Are these offers ever accepted? Not that I am aware of. Maybe they have all the help they need? I truly hope this is the case. ???

Apparently we walk a different path. Now be on your way.

Outsiders see that we have a foundation and I really am happy that we do but what is their function? Doctors and other medical professionals have actually referred me to them. LOL Apparently they are not aware that MFR cannot help us in the way that we need help. Perception falls short of reality.

I would have much rather had Dr. Wymore tell us if the DNA sequencing has already been done instead of only mentioning this to disprove a video. Does anyone else find this to be strange and sad?

I see contradictions everywhere! It’s easy, inexpensive, and accurate…… Tell me why we are all still sitting here in the dark suffering and grasping at straws daily? ???

Why did I come to a public forum to look for answers rather than a foundation set up for people like me? Think about that one very hard. ???????

Peace,
Sabrina
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Postby in_the_uk » Sat Apr 08, 2006 10:59 pm

Lynne,

no I didn't see the show, I just did a google on "Schwartz" and read that and thought it was quite interesting. It might be a good idea to gather all the different bacteria that get mentioned into a list actually. Pseudomonas can now go with Borrelia burgdorferi

Sabrina,

what are you like? The grass doesn't grow under my feet when it comes to possible defences against this thing. This afternoon I have been out and bought 2 tubs of taurine 500mg, one for me and one for Ed, as well as a tub of oil of oregano 250mg and I am going to order online a tub of 1000mg. Anything that is anti bacterial is finding its way into my arsenal and actually the guy that was posting did recommend the taurine quite highly. I don't know what you think. I have opened and started mine but I haven't seen Ed so I could take his back. Oregano is also antifungal.

I'll have a look for Timbor on the interent but they might have ti at the local garden centre. That would be useful for saturating that crate in before it gets moved around.

Does it work for live trees? I had a conversation with J Jill who has a lot of trouble with her trees dying.

I would also like to thank Dr. Wymore for his extremely helpful review of tamtam's video. Maybe Dr. Wymore and tamtam should get together to co-author a video for the first international Morgellons conference. Maybe there needs to be a second organisation called "The Morgellons Network" that organises conferences - small ones to begin with that are mainly presentations from sufferers and people with an idea (tamtam when he's redone his video :? ) about its cause. People from the health services can be invited and can attend as part of their training days and network with each other. These conferences will be advertised in the medical journals. Eventually conference papers will appear at national and international conferences - from conferences papers journal papers will appear. But "every journey starts with the first step". There is a substantial Morgellon's network already in place. I suppose the best place to start is California. Form a committee, find some money, find a venue, advertise, advertise and then advertise. Have the event and network with health professionals.

What about someone putting a book together of people's experiences? This could be distributed as part of an awareness raising initiative and distributed, in the conference packs, or just a mail shot to health centres, etc.

Helen
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Postby Linn » Sun Apr 09, 2006 1:23 am

What about someone putting a book together of people's experiences? This could be distributed as part of an awareness raising initiative and distributed, in the conference packs, or just a mail shot to health centres, etc.

yes, some sort of concerted effort would be nice.
But how to organize it??

About even bothering to post here, from my perspective, I am greatly encouraged more than you will know, just to know you are all out there with the same (or similar) =disease, and that I am not alone. That is comforting to me. Point blank, like a support group.
"How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving and tolerant of the weak and strong. Because someday in life you will have been all of these".

~ George washington Carver
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Postby in_the_uk » Sun Apr 09, 2006 2:06 am

Linn wrote:
What about someone putting a book together of people's experiences? This could be distributed as part of an awareness raising initiative and distributed, in the conference packs, or just a mail shot to health centres, etc.

yes, some sort of concerted effort would be nice.
But how to organize it??



I suppose the first step is to form a committee from people who are willing to run with it.. and I suppose the first step for that is a call for volunteers.

I agree entirely with what you say Lynne about having other people out there who are going through it. I dread to think how much I have spent on herbal supplements in the last couple of weeks, not to mention vinegar, but I wouldn't have known where to start without other posters both on this site and others. BTW thanks to ukguy. If I was not doing it for myself then this thing would slowly be taking a grip on me whilst I waiting for the NHS.

Helen
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Postby London » Sun Apr 09, 2006 3:14 am

Right on Sabrina and Helen too.

i learned a lot Sabrina from your post. I have not clicked onto the hyperlink to view Dr.W.'s thoughts yet. I thought I was just out of the loop w/ the M.Foundation since last October when I got rid of my laptop and
got a desktop Pc- thus having a new web address but never wrote back to the Foundation to alert them of the change.

Looks like alot of others are still in the dark too. Do you or anyone else
think this is due to funding problems? I have no idea.
__________________

Dear Lynn,

I'm sorry I did not see your post until tonight. Thank you for answering me and thank you for sharring so much personal information.

Wow. You are lucky to be here, you know? I'm so sorry that you went thru that. It's amazing that your body was able to heal from Morgellons

due to your past health history. I figured your body might have always stayed in a low-working immunocompromised state- thus never able to rid the Mor'gs grasp.

I'm glad you are okay, and again, thanks for sharing.
__________________

On a lighter note, the local drugstore down the street was having a sale
on there " office products" so I bought 500 envelopes. I have a lot of stamps too. If it comes down to it and I just can't sleep tonight, I think I will just stuff envelopes.

People always like getting something new in the mail. Maybe I will give this like another week or two before I mail any. Hopefully by then

something will have changed. I know the CDC is rapidly changing their websites to keep up with possible excuses for our disease. I wonder just how many they have on staff there? So many Gov't officials yet they can't

help us?

Oh, Hey.....Seriously, I meant to tell you guys that there is now a Morgellons Diagnosis Code for our illness. For Real- I got this info from a Lyme Disease Dr.s' secretary that I'm trying to get into see.

She had to tell me the code so that I could tell my insurance carrier.

It is: Lyme- 088.81 & Morgellons- 691.80 ( I do not know if this is a national Code or what. I live in Texas)

Sincerely,

London
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