Morgellons-Disease-Research: My Story

[Franky]

Every once in a while, actually more often than I would really like, I am asked the same old question. I get asked most of the time out of shear curiosity, but every so seldom it’s more in the cynical tone, but lately with the explosion of Morgellons, it’s been more cynical than not.
With so many sick people out there, looking for real people to talk too and being scammed all over the internet with magic cures, scare tactics and sales pitches, I can fully understand the feelings of disgust and distrust.

So with this in mind, I finally tell my story of Morgellons and the geneses of MDR.
This all started quite a few years ago, long before the internet, the wide-ranging media and even the general public even heard or cared about Morgellons disease. In fact everyone back then was completely labeled nuts, drug addicts and borderline mental patients, much more than they are now. Not to say things are so much better now at this present time, but they were really much worse then.

The actually story is quite long and extensive, but I will do my best to keep it short and sweet. Basically it kind of started all of sudden, one day at work. One of my best friends at the time, which we call “John Doe” for privacy, came up to me and complained of being quite ill. And since we grew up in the health industry and studied natural and alternative therapies, he had me a bit worried.

I asked him what he was feeling and what symptoms he was experiencing. He said he had this incredible feeling of insects (parasites) creeping up and down his chest at night or at rest. It all started to make sense at that point, he had begun to get deep brown color under his eyes and complaining of feeling tired all the time. He was having major trouble going to sleep at nights and it was starting to affect his appetite and metal state. In fact if I recall right, it all went downhill pretty fast after that point.

He started to progress with the illness and get worse and worse, faster than I and his other close friends could help him. He started to lose weight, as he complained of having the feelings of actually feeding these organisms with the food he consumed, so he ate much less. I do not actually remember if he mentioned Morgellons by name, though I think he did, actually he did when Mary Leitao officially named it.

He was part of some internet groups trying to communicate with others and researching information on the symptoms. There was very little info out there for us to research back then, we were quite young, it was the beginning of the internet boom, and he almost had all the symptoms of Morgellons back then. He had the brain fog, the creepy crawlies, the stinging, biting, and the occasional sores. John was lucky when it came to the sores, he luckily did not get much of them.

Mentally though, the illness affected him quite strongly. Cutting to the chase, he eventually lost his job, his personality, his friends and family support. He went to tons of doctors and all they said was, it was in his head and needed to see a shrink. It eventually got to a point where, he almost starved himself to death, I almost cried when I saw him, but I was just too shocked. I never gave up on him, but he slowly faded away, even as he did get better.

He did get better with some natural therapies we picked together and some alternative ideas he came up with in his research. However, he was never the same persona again and still is not to this day. We occasionally see each other, but he is much older than me and much more tired these days. I am glad to say he is much better and stable health wise and mentally better as well. Therefore, even though I lost him as a friend, I am happy that he is in fact in better shape. And that is how I got involved with Morgellons in a nutshell, I hope that answers some questions.

[Franky]

As a follow up post to the above, there will be some changes to the site, actually more like going back in time to its original purpose of existence. When I first created Morgellons Disease Research or MDR, there was one reason and only one reason for it, and that was for support!

There was no Morgellons Theories and Speculations, no egos and no personal agendas. There was just a small group of sick, caring people, just looking for some help. Man, I thought it was rough then, look at us now lol. I built MDR as a form of therapy for my friend, myself and hoped to help a few people as well. I knew the net was going to be a great way to communicate with the world and I had/have webmaster skills, so I thought I would put it to good use.

You may ask why I still do this, because I am part perfectionist when I have a passion for something. Quite simply, I love health, the internet and helping people if I can. Therefore, with this, I can honestly say I have lost focus with the site, trying to make everyone happy at the same time. Well trust me, It cannot be done and still keep your sanity.

Finally It is my site and I have to do what I think is best overall. The site worked great at its inception, and all we did was focus on helping. At the time, I made a great friend (mod at the time) and we proceeded to help as much as we could. Her help with the site at the time was greatly appreciated and deserves recognition. We kept all the egos, negative attitudes, the million of conspiracy theories at check, among other things.

The site has become an international site and we have people coming from all over the world looking for a friend and help. In laymen’s terms, we are going to keep the site focused on Morgellons and not your latest beef with the government, NWO, end of the world proclamations etc. Of course, we will talk a ton about other subjects, hey, we are a community, but I think you get the point.

Even though this new focus is not really up for debate, feel free the comment.

[Kritters]

Franky,

I can understand why you are making this decision. It probably should have been made a long time ago. It's been like this since I joined and I've posted upwards of 3,000 times!

I've been part of what you are eliminating here and I cannot fault you on it. What you say regarding the worldwide recognition of this site is significant to say the least, and it is important to focus on what your intended purpose was and is.

The subjects you admonish are related, and the more 'research' we do, some of us see the connections while others may not. I have seen unrelated forums have the same discussions, because like it or not, the truths are coming to surface. However, I guess it may be possible to reel in the extraneous and focus on the end result cures or information toward that end.

I do want to say that the freedom we have had was appreciated by me in that, as dysfunctional as our family is, it is still a family and you have brought us together (for better or worse LOL). And that for the sake of healing and providing support of Morgellons sufferers, I can definitely make that concession.

Thanks for providing this forum. It's the best I have seen out there.

Kritters

[Kritters]

Franky,
I would like to add something after re-reading your posts. I joined at the 'change of the guard' so to speak, and I have to say that even before your mod left nothing was perfect on the forum.

People have a personality and some people here are very passionate about the related subjects to this disease. This forum is called Morgellons Disease RESEARCH and in fervently researching anything and everything, we have people who are astonished at how this and other diseases are not only allowed to exist, but in all probability, based on very valid sources, were created for that purpose. Upon learning of plausible connections, it's very possible to glean insight as to what could help combat this thing.

What I said in my above post still stands...it's your forum and so far the best....but I neglected to say the reason I feel it is the best is because we have had the latitude to a certain extent to include what you intend to exclude. Again....this is not what you have intended, but it has been going on for quite some time, and I have to say that Carla has done a very good job of reeling people in without making them feel they are not appreciated on this forum.

For those like myself who are not afraid of 'watching eyes' and are, after learning things we cannot turn away from because they are affecting us and our loved ones in a very profound and serious way, I'm sure there are a ton of websites out there which will incorporate disease (inclusive of Morgellons) with the illuminati. I will do my best to find them and I'll pass it on.

Meanwhile, I hope our work so far on this forum will lead to good health and a cure for "Morgellons", and once again I want to thak Carla for being the best Mod with the most difficult job of juggling I would not want.

Kritts

[Sadsack]

Franky -
I thank you more than you can know. This was my first forum, 3 days after I found out what was wrong with me. It felt so good to have people reach out in support...I was so terrified and frantic.
I hope everyone tries to cooperate with your wishes. It would be a shame if people were banned for engaging in lines that you would rather not have here.
I hope you don't mind if I post the name of another group that is very tolerant of discussions of any theories (especially the ones you outlined above). If people feel they really need to explore these areas with others, it is good to have another place to go for those discussions....not to leave THIS group, but to separate out their needs.
The forum is Cliff Mickleson's site - Morgellons Group.
I go to 3 different forums for different needs, and try to respect the parameters laid out by the group owners (sometimes step over the line a bit on this forum!!).
For many of us, it gives us a sense of control when we delve into possible explanations for this most horrific of nightmares.
I'll do better in the future.
SS

[kool-aidman]

I'm going to have to agree with you franky,

will have to stay in bounderis into there is a real deffinition to this disease,

i have to say everyone on this site has been very helpfull and i'm feel alot better with some of the treatments, i'm not 100% but i can say this site has been a God sent,

thank you Fankey for sharing your story, it makes me know i'm not the only one out there,

I also wanted to thank all that have spoke to me about this disease, you all have been so helpfull,

Koolster

[jonsi]

Thank you Franky for this site. Thank you Carla,

This site has been my best friend during the times when I felt so alone and isolated. This site has given me access the best information and people I could ever hope to meet. I have found true friends here.

In the white light,
~jonsi

[TWIGGYAZ]

I agree.. and all of you know that when you first get symptoms, you really try first (which is sad) to find out WHAT it is and WHERE it came from, and treating yourself is the latter.

I have actually stopped theorizing on the how and why and who and what and directed my energies to focus solely on getting well, A HUGE part of that is talking to others here and other similar forums (which is a Godsend and Praise the Lord for it!) and sharing treatment protocols, provide and get support, share stories, good and bad days... Well, that is why I am here.

I am only two months into inheriting this anomalie we call Morgellons, and have been reading more than posting, but now you will see me much more. I hope to meet many friends and be there to support others as well.Without the net, I would be so lost. I cannot IMAGINE and still to this day am so not worthy to all of you who have been dealing with this for YEARS, with basically no help in the medical community and others.

It is still SO VERY HARD. I feel like some unauthorized science project, less of a person, and you and your family wonders where the person they knew has gone to... I wish I knew...

Well, my new quote that I have adopted recently is this:

"If God has brought you to it, he will get you through it".

Do I believe it? With all my heart.....

-Gia

[carla]

I'm sorry I've done such a poor job everyone.
Here was me thinking the site had improved dramatically.
When I first came here no one was allowed to say they had worms under their skin or that Eco -vie wasn't working for them .
I was told to put my one year old son on antibiotics and dewormers to cure him .
If I hadnt researched the long term side effects would he be with me today?
As for gripes with the Government. I've been through absolute hell on earth and continue to do so because they fail to do what they are paid to do.
And still they are pushing to make our lives even worse.
What are we going to say to people next December when Codex stops us getting supplements?

Thanks for trying to defend me kritters.I appreciate you .
carla
xxxxxxxxxx

[hilly]

Carla.... please don't feel upset in any way... I don't think Franky meant anything about you or failings on your part... my goodness you have been a 'rock' here helping him and smoothing the way for Everybody.. you could'nt get a better moderator and I for one feel much more secure and happy with you there than I did when I first joined.. It's lovely now and surely there's room for everyone... Keep your chin up and rest assured that you are Great.... Hilly xoxoxoxoxoxoxoxoxoxo