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The Fiber Disease

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Postby Linn » Fri Apr 07, 2006 9:11 pm

Helen,
I googled the vinegar of four thieves,
that was freaky!

Actualy some bacteria can not grow in an acidic
enviroment. botulism spores can not grow in acid.

cyanobcteria is not found in acid water.

I never took vinegar internally,
(except in my salad dressing)
only used it on the lesions.
My dermatologist asked what I was using for the itch,
and I told him vinegar is THE ONLY thing that works.
I thought he would think that was bull,
and he replied that actualy it is excellent for relieving itch.

Have you ever gotton vinegar near your eyes?
It really burns, not too many organisms can deal with that.

Well, enough of that, I just pass it along in the hope it will
work for you too. And BTW I only use the white.
I just hope this does not come back. I
do still have fatigue however, but not as bad as it was.

To Cilla:
you are right that we never know who is reading this,

Senetors, scientists, doctors etc...
it is a public forum. I do not post here to look for a cure
or a doctor, but to share with others suffering, compare
notes and encourage each other.
If there are doctors reading this, and want to help I am open to it
send a PM.

I think we should all be looking to find some
common denominators . One can not just make blanket
statements about what this disease is without scientific study.
It seems like there is more than one disease being
discussed.
If there are doctors who want to help they could send Pm's
and get more detail, so far that has not happened.
nor are they identifying themselves. In addition, some
have posted some far out biologicaly immposible explanations
that may just add to the label of this looking like
a nut case disease.

The Morgellons foundation is doing the research and I can
wait to see what THEY come up with. And, as you say be
recommended by Mary as to any doctors willing to
investigate this.

The problem, I believe is that it can not be investigated by
one visit to the doctor. When a person is in an active stage
he/she needs to be admitted for observation and testing.
something that I believe has yet to be done.
"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 » Fri Apr 07, 2006 10:24 pm

Linn wrote:Helen,
I googled the vinegar of four thieves,
that was freaky!

And BTW I only use the white.
I just hope this does not come back. I do still have fatigue however, but not as bad as it was.



Lynne, I only use white vinegar. Ed has tried brown malt (he borrowed some from the Indian restaurant when it was too late to get to the wholesalers but he wanted to carry on working) and he did not find it as effective.

I buy it by the gallon and on Monday I will phone a place where I can get it in larger quantities. I put big glugs in my bath and am having two baths a day at the moment. So it is never strong enough to sting my eyes. This evening I think that I will put some in an atomiser to use after I get out of the bath as well. I put big glugs of dettol in as well.

The doctor in the uk who is treating morgellons has an interest in chronic fatigue.

With regard to what you said to Cilla about keeping the posting within the realms of reality, it seems that the first hurdle to getting any help is getting past the delusional diagnosis. I am sure that if one explained the fibres with a science fiction explanation the doctor would believe that one had been abducted by the aliens and order the posse to take one away. :)

Best wishes,

Helen
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Postby Linn » Fri Apr 07, 2006 10:54 pm

Helen,
please keep posting here. :)

I hope you get better,
and are you keeping a journal?
I was writing things down but stopped. but I think
I need o start again and be meticulous about it, in
case it starts up (God I hope not) again in case something
triggers it.

A few years ago the fatigue was so bad I spent weeks in bed.
And sometimes I couldnt even balance my checkbook
because my brain was so tired.

You know if I did not have this myself,
I would probably think we were nuts!!
It really seems like an episode of the x-files!
I guess I can't blame doctors for thinking that.
But if they would just look with a magnifying glass....
I had this for years and did not see anything only
a bug-bite type rash until I really looked under magnification....
:shock: and these things were UNDER my skin too.
and My mother and two daughters have seen it too,
so I know I am not delusional. Not one single doctor
has even done that yet, thats wrong.

Put two and two together...you feel something biting you,
you look, and you see something.
What if I told someone who just got bit by a mosuito
that the bump was deludional? or if I see a bump that
It is nothing no bug bit you??

well this no-see um is a seeum with a magnifying glass!!
Take Care Helen, and continue being dilligent with the vinegar.
when I was going through that my mom made sure I kept up the treatments,
if i stopeed it for even one day it came back, and she would say "did you stop the vinegar?" I am talking about 6 months
of vinegar, splashed on after my shower, baths and in between!
Be crazy treating the "crazy" disease. Now its bee two months the longest time yet!!
"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 Sabrina » Fri Apr 07, 2006 11:06 pm

Dear Cilla,

Mary from MRF has been very good to me and I really appreciate all of her hard work and efforts. Per her referrals, two doctors now, one LLMD and one ID doctor that I mentioned in my previous post did not get me any closer to treatment, just further in debt. Their words are not always golden!!! She honestly tried and does everything from the goodness of her heart, not even on the payroll! God bless her.

The referred ID doctor for my child said, “I did not treat the first little boy with Morgellons and I do not plan to treat the second one.”~ Dr. Marion Michaels (Infectious Disease Dept.), Children’s Hospital, Forbes Ave. Pittsburgh Pennsylvania.

Mary knew what she was sending me to, I had no clue. The second doctor recommended fired me (third visit) when he realized I was applying for disability. I spent all of my student loan money to try to pay these doctors and only got further in debt. I have no money left to pay anyone anymore.

IMO, MRF has a priority for us as a whole and guides us to go to doctors that have already seen one or more cases already. Whether they even believe this is real or even know anything about it does not seem to matter when referrals are given, not in my case anyway. Don’t put too much faith in this approach to get an educated or helpful doctor as it surely (unintentionally?) just made matters worse for me. I would have felt much better knowing I was making an appointment with a non believeing/closedminded doctor and not been in total shock when she questioned my stability and refused my child treatment despite physical evidence. I was expecting to get help from this referred doctor, instead I received humiliation and was told that, “their was no need to come back” despite my child’s positive western blot (Lyme) and video of the fibers.

While I may have made an impact on this doctor in regards to giving any creditability to this disease (in all of our best interest) I still could not get her to treat my son (not in my best interest). I do not wish to be a martyr and only want to save my child and myself first. While this may be selfish it is my first priority.

MRF is not always the answer Cilla. Mary is doing all she is able but she cannot do everything nor should she be expected to.

That’s all I’m going to say about that.

“My video…….My video is of the fibers not feathers. The fibers that can be seen being pulled directly out of the skin are the white cottony ones. This video freaks everyone out who dares or is obligated to watch it. You would be shocked to find how many people refuse to even look (everyone in my family)!!!!!!! I do understand their fear.

Dr Michaels called in a colleague to view this video after she was forced to watch it, it baffled them both! She asked me to make her a copy of it to send along with my son’s samples that I forced her to collect to send to the CDC. She is the crazy one if she thinks I’m just going to make her a copy of this to show all around Pittsburgh to whom ever she wants to with out treating my kid first. She has already violated a HIPPA law in regards to privacy; formal complaint made for documentation can be verified. Cannot trust her at all. Why she would even want a video of, “lint” as she describes it, coming out of skin is beyond me. She also could not tell me how that, “lint” got inside to begin with.

So that’s my video Cilla. I have not shown this to anyone but our doctors (copies made for no one) as I have been very selective and protective of the contents. This video is not of my skin but my child’s. I could be convince to share this if I knew it could help in some way but putting it all over the internet is not the route I wish to take. My child can make the decision to do this if he so desires when he is old enough to make that decision, it is not my place and I have much respect for him.

I hope I have not gone on for too long and hope some of what I have said helps in some way. Once again Cilla, thank you for everything you have done and are doing. You got a doctor to listen to me. Mountains are moving wouldn’t you say?

Peace,
Sabrina

Dear Linn,

“The problem, I believe is that it can not be investigated by
one visit to the doctor. When a person is in an active stage
he/she needs to be admitted for observation and testing.
something that I believe has yet to be done.”

I do not believe this at all as I have accomplished this seemingly impossible feat several times now!!!! All I needed to do was bring a backlight with me to an appointment and convince them to examine us under it. They all told me that they, “do not understand what they just saw” and sent me on my way, at least I never got the DOP but never got the help I need either. I also produced black specs on demand at the Health Department; all were observed first hand and collected. They still have not told me what ever became of these samples despite requesting this information via electronic mail. Certified mail is the next step. What did they do with them???????????????

Dear Randy,

I never tried the gold bond until now. Guess it was just too simple for me. Let me tell you sister I got some serious healing going on! Thank you. All of the lesions on my legs are clearing up, this is amazing. I’m also able to rid the surface of my skin of a substance that comes off like peeling from sunburn would only it is a very dark bluish black color. Gross, I know but my skin feels clean and very good after getting that excrement off of it. I owe ya!

To all chasing the wild goose,

I’ve been there. Sorry to say but the government or anyone else other than us could careless about that shipping crate. I would hate to see anyone waist time and be unfruitful in their endeavors no matter how important this evidence may be. Work smart and learn from others mistakes and you will go far.

As far as the Man with the mill, may I suggest a product recommended by my personal Chemist? I have not been able to use this yet, don’t have the funds to order, but he says it works great. Just a suggestion that may be more practical for his dilemma.

“Taurine. Amino acid building block that seems to inhibit Morgs somehow. The big difference between it and other proteins is that it contains a sulfonic acid group rather than carboxylic acid group. This makes it a potent sulfur-bearing antioxidant. IMO worth adding to your arsenal against Morgs as I have certainly seen a benefit. My guess is that it inhibits Morg's ability to break-down sugars/carbs/alcohols for energy because it alters ionic membrane transfer.”

http://lymebusters.proboards39.com/inde ... 189&page=1

Peace,
Sabrina
Last edited by Sabrina on Sun Apr 16, 2006 3:30 am, edited 1 time in total.
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Postby Linn » Fri Apr 07, 2006 11:16 pm

Sabrina,
OMG you mean they actualy said they
saw it and turned you a way?

That is terrible.
I am really loosing hope and respect with
the medical proffession.

I think too, that we should NEVER use the "M"
word either when we go to the doctor.

Sabrina, I thought you had been doing better for a while?
"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 » Sat Apr 08, 2006 12:05 am

Lynne,

I am lucky :? because I did realise that I was taking a risk and I did take precautions and I was on the ball as soon as it started. I haven't got to the fatigue stage yet and if I have sucess with the uk doctor then I should be able to erradicate more speedily then others. Its a nuisance but I am quite pleased that I have been able to be instrumental in such a vast improvement in Ed's situation and coping stratgy. He has a handle on it now and can start fighting it effectively whereas, when there was complete ignorance about it everything that he had was slipping through his fingers.

I think that it is a power thing. You go to the doctor for help, the doctor doesn't know how to help you so rather than admit that they don't know you become the problem. I am sure that with persistence, either someone will crack it, or even stumble upon the answer, or a critical mass will be reached and those that have the resources will start doing something.

At least I feel that I am controlling it and it isn't running rife.

Helen

Sabrina, thanks for the tip about taurine, I'll pass it on. also of interest from the link on the page that your link sent me to is oregano oil. and the garlic. I already have 1000mg tablets on their way. I think that I could give my cat those tablets as well in case he has been infected.
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Postby London » Sat Apr 08, 2006 12:48 am

Sabrina,
That was the best post you have ever written. Wow.
May I ask re: videotaping; were you just using a regular, normal
videotaping machine? I'm assuming you were but do not know for sure.
Also, what a Tip.....the taurine that is. I have some here although it is probably expired. In fact , I got the stuff probably 3 years ago, yet I do not think I've ever broken the seal on the bottle. I'm very happy you posted that here b/c L.busters
has so many strands- post are easily missed. Koolio, I'm going to try some tonight. I'm very sorry your son suffers from this. It brings tears to my eyes just thinking about all the children.
_______________________________


Lynne,

I have a question and a comment. I was wondering since you say you are nearly "symptom- free" and that you never used the white vinegar internally, how you were able to rid this thing from your insides?

At one time, before my forarm broke out, I appeared (looking anyway),
Symptom-Free myself- did not even have itching nor crawling on me for a brief while. Yet, I never got rid of them in my stomach/ intestines.
so I was wondering your take on this aspect of it.

Also, you stated that we all need to find a common denominator. I wish it were that easy.....I think you mentioned that it seemed to you like there
were different diseases going on. I know that must seem strange for an outside, non-infected person looking in here, but what are we to do?

You had this Lynne, did all the things/ creatures, what have you , look the same to you? You know good and well that this thing Morphs various
times, thus it changes things......I'm not nit-picking on you Lynne; that's the last thing i'm trying to accomplish. I just can 's see how / or what you think a common denominator would be or how it would fit in here......I'd love to hear
a suggestion if you have any. ( or anyone elses on this topic)

This disease Mophs, flies, makes noises.....you name it. I will certainly though try not to post anything " out-there' and keep my posting minimized too, I really will........

Now please, I'd love to hear about how you think you were able to rid
this God-awful creature internally.....

Thanks Lynn.
__________________________

To ALL: Does anyone have any articles on testing procedures/ results

of parasites that are genetically modified?


Thanks if so.....

London
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Postby Linn » Sat Apr 08, 2006 1:46 am

London,
to answer some of your questions,
I am not sure if my insides are better or not,
I still have some bad days. As far as intestines go
I had 9 feet removed
in 1990, I almost died from septic shock and they had to
try all kinds of
antibiotics as they would not work. How I am still here is
a miracle.
Now that was BEFORE the 'fiber skin symptoms"

If we go back even further for my medical history,
I had Angel fish that were live caught from the Amazon
region in 1986, I was breeding them. they got a weird parasite
(small round,white). These parasites were easy enough to kill,
but the eggs could not be penetrated by chemicals,
not even bleach. Some of the parasites burrowed in to my
left forearm.
I had numerous , small round white scars, and that was all.
No itching, no lesions, nada. I felt fine. a few months later I was admitted to the hospital with severe abdominal pain. blood work showed high elevation WBC.
They thought it was my appendics but it was pink and healthy.
. Diagnosis: unknown, although my small bowel was markedly
distended. 4 years later, I ended up in the hospital with the above condition, volvulous, shock, respiratory failure, jjunostomy, illiostomy, traceostomy, coma, 3 months in the hospital and sent home with an illiostomy :( illiostomy closed in 91.

1992 I had ovaries removed due to huge cysts.

I did Ok until 1998 when I was again hospitalized for volvulous.

1999: while pulling weeds by a pond I felt a sudden sharp
"bite" like a flea or mosuito bite only more itchy. That night at home I nearly went out of my mind with the worst itch you can imagine (I have had chicken pox) this was worse. that was the begining. Also I began to have bouts of debilitating fatigue wher I could barely function for days even weeks at a time.
and here I am today, maybe enjoying a temporary remission?
Or is my body finaly fighting this???

Is everyhting connected? was that initial parasite the cause?
or did everything that happened to me just make my immune systom disfunctional? I dont know.
But I concentrate on the skin aspects because I would rather die
than live with that itch, I will tell you I could scream, thats how
bad it was. imagine 100 fleas biting you in one spot and then magnify that by 1000.
And for me, it is vinegar that helped. maybe that is not everyones protocal, I tried most of everything every one else mentioned and
it didnt work.
Tam mentioned some things I have to admit,
that make sense in my case. But other things do not make sense to me.
maybe I am too dumb to understand??? :(

I guess that is the first time I told my story like that on the forum.

What do you think? Could all of it be the same disease???
"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 yet again » Sat Apr 08, 2006 2:09 am

London -

As you mentioned with respect to Linn:

"Also, you stated that we all need to find a common denominator. I wish it were that easy...."

I read a succinct, (by my estimation), statement to this effect, by, i believe, Mary L/MRF that: "The common thread, is the COMMON THREAD...", i.e.: why we often call it: "The Fiber Disease"

I find it relevant.
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Postby Linn » Sat Apr 08, 2006 3:20 am

sorry
I like to find out the begining of this.
Like all disease gets traced to its origin.

and I have the 'classic" case-book symptoms as described
by the Morg Found
I do not have feathers, but I am not saying they are not there for other people. No one else has mentioned they have the black- apple seed shape with tapered ends thing that I saw comming out of my knees either.
If this is more than one disease then there are different protocals for different things.

Sorry if I somehow offended any one by wanting to know those things. :?
"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 yet again » Sat Apr 08, 2006 3:46 am

I am not, and was not, offended. I just intended to make note of the one thing that most of us with our endless symptomatic presentations DO have in common, and, as whomever it was that made the statement of the "common thread", i believe in my extensive reading of various boards dealing with the issue, most 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.

ciao
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Postby standby » Sat Apr 08, 2006 5:14 am

Sabrina wrote:



Work smart and learn from others mistakes and you will go far.

Sabrina, good advise. But tend to think (in general) we learn most from our own mistakes.

Sorry to hear your refferals went poorly. That doesn't neccesarily mean others experiences are or would be similar to yours. How a patient addresses their own condition with a physician is exactly that ...... their own. The sacrifices and choices we make are also our own.


How can anyone truely know what an outcome will be unless we try.
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