Morgellons Disease--contagious?

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Simela
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Date Joined Aug 2010
Total Posts : 552
   Posted 9/13/2010 9:58 AM (GMT -6)   
"The condition appears more common in nurses, teachers, and in family members in the same household, which suggests a contagious component. "
 
here is the article:
 

vicparis
Regular Member


Date Joined Jul 2009
Total Posts : 113
   Posted 9/13/2010 10:56 AM (GMT -6)   
"The condition appears more common in nurses, teachers, and in family members in the same household, which suggests a contagious component. "
 
Thanks for the information. That article was published over four years ago. In all honestly, if I wasn't horribly depressed before (which I was), I'm ready to jump off the bridge after reading your post. You know nothing about this disease. I'm guesing you're trying to be helpful, but unless you're an expert or actually have Morgellons, maybe it would be best if you thought how your posts would affect someone who already has this dreadful disease. It's not helpful. Take Lyme and then multiple by ten. A lot of Morgellons patients are so afraid to go outside the home. I'm in touch with other Morgellon researchers/practioners. I see an LLMD/Morgellons specialist - I don't get my info off the Internet or Wikipedia.
 
Please don't post quesitonable information you've read on the Internet - you have no idea what kind of impact something like your post can cause.
 
 No one in my household or anyone else that I've been in contact has Morgellons except me.  Would I give blood? No - especially not with the Lyme. I've asked my LLMD (also a Morgellons specialist) and he assures me that Morgellons is not contagious. The specialists don't think Lyme's contagious and I believe that to be so - but who knows what future research will bring.
 
I think I'd better resign from this board at this point. It's doing me more harm than good.  It's a shame really, it was one of the few places where I felt like I was with others who were going through the same things that I was- someplace where I could get informed info and share my feelings and get/give support.
 
One more thing, this is a Lyme support board - not a Morgellons board. I've always tried to not discuss M on this board unless another member sounded as if they needed support.
 
V.

Post Edited (vicparis) : 9/13/2010 10:15:26 AM (GMT-6)


Simela
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Date Joined Aug 2010
Total Posts : 552
   Posted 9/13/2010 11:11 AM (GMT -6)   
V:

Sorry, I did not mean to upset you or anyone else.  I don't think this is false info, the info is coming from an article I found on ILADS' website and it is written by an MD that treats the disease... I didn't mean to upset you, if you believe the info to be false, I guess you could contact ILADS. THey should not post any false info on their site. I posted this because a member here was asking questions about it. If ILADS is posting false info, I would like to know. Not sure who I can trust, if not ILADS???

If everyone here believes this info to be false, please let me know.  If it is correct, I would like to know how I can protect myself and my family against it.  What else is out there that we don't know about?  How about schools?

The doctor that wrote the article says "many" people that have this disease also tested + for lyme, so there may be a connection, and if there is, I would like to know, since I have lyme and so far no one else in my family has any symptoms (including my baby) BEFORE I spread it and God knows what else, all around,  WHILE doctors are still trying to figure it all out ...

Again, sorry V, I wasn't out to get anyone upset, I have 3 children and I am worried.  I hope you will not let this one article keep you away from the forum.  THat was not my intention--we are all here to learn from each other...

Post Edited (Simela) : 9/13/2010 10:42:19 AM (GMT-6)


Mamyou
Regular Member


Date Joined Aug 2010
Total Posts : 317
   Posted 9/13/2010 11:28 AM (GMT -6)   
I believe that Lyme can be contagious. I also believe that if there is anything with a bacterial, parasitic or viral base, it too can be contagious given the circumstance and opportunity and the immune system of the people coming in contact. I don't know about anybody else, but I embrace the sharing of information. I don't have to like it or agree with it, but just having the basic knowledge and the ability to further research an idea is priceless. Personal opinion, of course.

vicparis, I'm sorry you're upset. There are many things that upset me but I still want to know what information is out there just so I can pick and choose what I believe.

Deejavu
Veteran Member


Date Joined Aug 2005
Total Posts : 3787
   Posted 9/13/2010 5:28 PM (GMT -6)   
Hi Simela,
 
How can I say this in a nice way?  The article is from 1 doctor who is part of ILADS..  First of all, I don't agree with everything ILADS has to say, some things yes, other things no way..   ILADS does NOT have the answers nor does this doctor. 
 
Please do your research on any disease and you will find 100 different theories on any disease..  Just because it's ILADS does not make it a fact...  When I research I just don't look at one article, I may look at over 100 because I decide what can be possible..   I always look at both sides of the coin if you know what I mean.. 
 
I could post many scary things that happen to be fact based but I don't because I don't want to scare nor upset anyone..   Simela, if you want to know what I am talking about please e-mail me privately.
 
Vicparis, you are absolutely correct when you said "One more thing, this is a Lyme support board - not a Morgellons board. I've always tried to not discuss M on this board unless another member sounded as if they needed support."
 
Please don't resign from the forum because Simela didn't do her research and is not being supportive and NOT sticking to lyme disease okay?  You seem so nice and it's a shame how other's can upset other members..  
 
Hang in there vicparis,
Hugs,
Denise
It's all about Detoxing Daily, strengthening the Immune System mixed with a dose of Positive Thinking!
 
This song is about my years with chronic lyme since 1995 and being symptom free for over 4 years:  http://www.youtube.com/watch?v=ds81S61UvPA
 
Currently taking Estrovera, ProgX (progesterone), Adrenotone Plus, CoQ10, Vitamin B Total, C, Green Vibrance, CALM (Magnesium/Calcium)

Post Edited (Deejavu) : 9/13/2010 5:00:34 PM (GMT-6)


Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 13993
   Posted 9/13/2010 6:01 PM (GMT -6)   
I believe that Simela was just asking a question to a group of people she felt comfortable enough to ask those kinds of questions????
It's been through research type reading, and asking questions here that I have learned what I now know about tick-borne illnesses, certain viruses and the complications that can come along with those things.
Blessed are we who can laugh at ourselves, for we will never cease to be amused!!!! :)
May we all find peace along the journey to find healing.
"Absence of proof is not proof of absence" - Dr. Edwin Masters, great LLMD & researcher -RIP
Trav

nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 9/13/2010 6:07 PM (GMT -6)   
Hi everyone,

I don't think that Simela claimed to have done any "research" on this topic (nor should she be required to before posting a link to an article in an online Lyme publication!)....as far as I can tell, she merely posted info from a credible source because another forum member had asked a question.

Yes, I think that ILADS is a credible source....at least they are on our side in that they are trying to get the IDSA to pull their heads out of where they stuck them and get rid of the CDC criteria for the Western Blot!!

We don't know if it is true that Morgellons is contagious, because we are not researchers in this field. Even the researchers themselves don't know if it is true or not, but they have to put their best data out there! This doctor's own experiences and the experiences of colleagues lead him to think that Morgellons MAY be contagious!! He does not claim that it absolutely IS contagious (and neither did Simela)! Did anyone notice that he uses the phrase, "suggests a contagious component"?

That's research-ese for "This may possibly be true, but I don't have enough data."

Simela was trying to help answer a question by posting information. This is a Lyme disease forum, but there must be some connection, however remote, between Morgellons and Lyme or ILADS would NOT have posted this article on their site! There have been other threads on Morgellons here before and people have not been attacked for starting them!

I think it would be very sad indeed if people stopped posting links to interesting and helpful articles because (a) they might offend the occasional individual to the point of causing them to resign from the board, and (b) they might be attacked for not doing enough "research" before posting!

There's way too much of this sort of stuff on this forum....why is that?
JoAnn
Lyme Disease, Babesiosis, Ehrlichiosis, Bartonella, AIH, Hashimoto's, lupus, fibro, RA, celiac, asthma, psoriasis, adrenal fatigue, pre-diabetic, Raynaud's, hypertension, osteopenia, sleep apnea, RLS, GERD, DDD, severe lower back pain, cubital tunnel, tarsal tunnel, Suprax, Mepron, Alinia, Zithromax, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Liothyronine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec

autoimmunediseasesgfliving.blogspot.com

Willowrose
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Date Joined Oct 2009
Total Posts : 699
   Posted 9/13/2010 6:11 PM (GMT -6)   
I'm still pretty new at this so maybe I'm mistaken, but I thought the reason Morgellins comes up on Lyme forums is because it is a co-infection. I would consider ILADS a credible source for information; it is one that this forum and others have offered to me for reference about Lyme and coinfections. I am trying to understand the issue here; is the idea that we should cross-reference articles we find with other sources showing similar findings before posting them? Is it that articles should be positive in nature? My questions are sincere. I really don't understand.

I do not think I have morgellins, but I do have two strains of bartonella. Shortly after I found this forum someone posted a link to an article about people with bartonella going insane - mad-dog insane. It scared the heck out of me. I did more research and decided it was unlikely I was going to lose my mind to that extent. I agree with Mamyou. "I don't know about anybody else, but I embrace the sharing of information. I don't have to like it or agree with it, but just having the basic knowledge and the ability to further research an idea is priceless. Personal opinion, of course."

"vicparis, I'm sorry you're upset. There are many things that upset me but I still want to know what information is out there just so I can pick and choose what I believe." You do seem nice and I hope you will continue to participate on this forum.

Rose
I have Lyme; it doesn't have me.

rosesinjanuary
Veteran Member


Date Joined Oct 2007
Total Posts : 748
   Posted 9/13/2010 7:21 PM (GMT -6)   
Hi
my brother has had Morgellons for a long time. I would say on my life his is not contagious and he has it BAD, like openings in skin. That horse wormer has helped him a lot, I am finally hopeful he'll get better.

scorpio1960
Veteran Member


Date Joined Jan 2009
Total Posts : 914
   Posted 9/13/2010 8:47 PM (GMT -6)   
IMHO I don't think anyone on this forum should be required to do extensive research before posting...most of us are just not capable. When I first came upon this forum and started to read what others were going through, for how long and the damage LD is capable of causing, I was not only petrified but became extremely depressed and hopeless but continued to read and then started to ask questions. I have no idea where I would be right now without this forum and all of the various opinions, information and experiences that are shared among us.

This leaves the question open as to when does a published article or any information for that matter become good enough for someone to share on this forum. Who gets to be the judge on what information is accurate or good enough? Also, since LD is thought to cause so many other issues (that cannot always be proven to be caused by LD) where would we be if we could not discuss the numerous medical issues and symptoms many of us suffer with (i.e. adrenals, thyroid, emotional, mental, misc. endocrine, gastro, etc., etc.) for fear of possibly offending or scaring someone?

Simela took the time to find and post information on a condition that another member was asking about and from what I've noticed the majority on this forum do believe that ILADS is reputable and much information from ILADS is often quoted and shared here. That certainly doesn't mean we have to follow or believe everything that's posted...we are all free to form our own opinions and follow our own paths but should not prohibit someone else from sharing theirs.

So many of us are very misunderstood by everyone else in our lives and I've always thought of this forum as a safe haven to share and learn....even if I don't always agree with or like what I read. Actually I like very little of what is written on this forum because LD is a terrible disease to live with and sometimes it's extremely difficult to face. If someone is too fragile to read an article that a respected doctor has written then maybe they should stay off the forum until they feel strong enough....that's what I do.

I personally think it was very unfair to attack Simela, especially when she was trying to be helpful. We are all adults and if we read something we don't like or upsets us (most of us are very fragile at times....how can we not be), we have the right to ignore it or give our own opinion but there's certainly no need to attack others or tell them what they can or cannot post, unless it's truly harmful, proven to be inaccurate or done maliciously.

If members become afraid of being attacked for sharing information, what will become of this forum?

scorpio1960
Veteran Member


Date Joined Jan 2009
Total Posts : 914
   Posted 9/13/2010 9:05 PM (GMT -6)   
V- I'm so sorry you were so upset with what Simela posted. My heart goes out to you....I understand all too well what it feels like to be very depressed and scared. I hope you reconsider and stay on the forum. We all need each other or at least I know I need all of you even though lately I've been MIA for extended periods. When I am, it's either because I'm too sick to participate or just can't deal but knowing that I have this place to come back to is a tremendous blessing in my book. Please reconsider and continue to participate.

Simela
Veteran Member


Date Joined Aug 2010
Total Posts : 552
   Posted 9/13/2010 9:42 PM (GMT -6)   
I actually wanted to take my post down, but I didn't for the same reasons that most of you mentioned above. What would be the point to have a forum if we can't talk about all this stuff? Now, I was thinking that maybe lyme could be contagious through intercorse and maybe even kissing? Some docs believe it may be passed through intercorse. Maybe other tick related diseases can be passed that way as well? THere were 2 cases (one in CT and one in PA) in "under our skin" in which the mothers passed Lyme to their unborn babies. I've had lyme throught my pregnancy, as I tested + a mo before getting pregnant. The symptoms mellowed down a lot, but didnt' completely go away. Mr dr said my tests (4 of them) were false +, and if I took abx for 3 weeks I was cured. I still don't know if I have co-infections--I tested negative by CDC standards for co-infections while I was already on abx, so that may change--who knows? Never went through the IGENEX.

I also posted here an article about Mycoplasma a while back. There was something in there about the disease being contagious within family members. It is prevalent in ticks yet most Docs dont' check for it. Hei, yes, it was upsetting, but I'd rather know about it and get tested, then not know about it and let it go under until I can no longer control it.

And if this disease that upsets one person MAY be contagious, I'd like to know and maybe others here want to know. If "MANY" people that have this disease are Lyme + MAYBE it is caused by tick bites.
I am looking for answers for myself and my baby (especially her, since we shared my body). If lyme is contagious I would like to know more about how to avoid passing it on to the rest of my family members. I am breastfeeding and the spirochettes have been found in breastmilk. I HOPE AND PRAY my baby doesn't have it. If anything else is out there, I would like to know more about it IF it is lyme related or if it may be contagious. My son came from school last year with the swine flu and got all of us sick. I was pregnant, had lyme and got the swine flu. I was upset the school did not let us know there were classes that over 50% of the kids were out sick. That is why I brought up the schools in my post--I do not trust them to do the right thing and protect children from contagious diseases.

I do understand some members may get upset--I was so upset when I started to read on this forum and I stayed away for quite a while.  See, I figure, I'd take some abx and it will be over.  Now I see people here straggling for years or even decades with this...  I still keep away at times and not post or read anything some days bec. I feel I can't handle it. I NEVER want to upset anyone here and I hope V will come back and post. Lyme is aweful by itself and many people have co-infections as well. It is no one's fault that this is happening to us. I only posted a link to an article I ran into while searching for co-infections--I did not assume anything, as I do not know much about this disease at all. 

Sorry, V.  I hope you feel better.

Post Edited (Simela) : 9/13/2010 9:18:58 PM (GMT-6)


madrivergirl30
Regular Member


Date Joined Aug 2010
Total Posts : 205
   Posted 9/13/2010 10:10 PM (GMT -6)   
JoAnn & Scorpio - I agree with everything you said - thank you. I don't think anyone should be required to research information on their posts, particularly questions, and I appreciate having a place to come to get information, and sometimes just read...

This is all a huge reminder about how emotionally-fueled these illnesses/diseases can be. It's also really hard (sometimes impossible) to write and/or read posts in a manner as to express or understand appropriate emotion. Many posts may seem harsh when the writer was only trying to be compassionate...this is a common issue people struggle with when networking online.

My personal motto is "take what you can (or want) and leave the rest..." I'm very, very grateful I found you all, whether I like or agree with what you post or not! We're ALL united in a common struggle...

Rachel

Post Edited (madrivergirl30) : 9/13/2010 9:35:27 PM (GMT-6)


Tala3
Regular Member


Date Joined Sep 2009
Total Posts : 233
   Posted 9/13/2010 10:25 PM (GMT -6)   
I completely agree with you madrivergirl30: "take what you can (or want) and leave the rest..." I do not believe Simela meant any harm with her post. Many people have posted links to this "type" of information in the past (not necessarily this particular topic). I have learned so much from this forum and have also been disgusted with particular "know-it-alls" at times. It all boils down to we need each other, we all have our own OPINIONS, and those opinions ARE going to clash with other people's opinions at times. That's all they are - opinions.

madrivergirl30
Regular Member


Date Joined Aug 2010
Total Posts : 205
   Posted 9/13/2010 10:33 PM (GMT -6)   
Tala,

Yes, you're right. I've had the same thing happen to me on online forums, where I've actually gotten to the point where I couldn't take it anymore, from certain contributors, and stopped using that particular forum. I don't think anyone means any harm; I think we all want the best for each other. But it's human nature to believe and want to share what your experience has been, what has worked (or hasn't) for yourself, and what you've been told.

There is SO much controversial misinformation, as well as strong and VASTLY differing opinions, even within the medical community, that it's probably a miracle that we, as patients, are able to come together and share information!

Deejavu
Veteran Member


Date Joined Aug 2005
Total Posts : 3787
   Posted 9/14/2010 5:10 AM (GMT -6)   
I guess I am the only one who feels compassion for Vicparis, how very sad. 
 
Not that long ago, we lost 2 members, yes, they died.   Sometimes it doesn't take much to push someone who is suffering horribly over the edge...
 
Denise
It's all about Detoxing Daily, strengthening the Immune System mixed with a dose of Positive Thinking!
 
This song is about my years with chronic lyme since 1995 and being symptom free for over 4 years:  http://www.youtube.com/watch?v=ds81S61UvPA
 
Currently taking Estrovera, ProgX (progesterone), Adrenotone Plus, CoQ10, Vitamin B Total, C, Green Vibrance, CALM (Magnesium/Calcium)

Mamyou
Regular Member


Date Joined Aug 2010
Total Posts : 317
   Posted 9/14/2010 7:31 AM (GMT -6)   
Denise.... Ok, my opinion...again..... I feel great compassion for Vicparis. You have no idea. Yes, our members die....I almost did by my own hand just a few weeks ago. In reality I should have died from my cancer diagnosis when I was 39...but I'm still here trying to figure thngs out. That's why we need access to any information we can get so maybe we'll make right choices. If we're in a fragile state on a particular day (or days)...probably like I'm going to be next week when I'm herxing.....then a forum combining the good, the bad and the ugly may be the last thing we need. Just don't read it then!!!! Morgellon's specifically is of great interest to me right now because a relative's daughter was diagnosed with it and lyme. She can't travel to a doctor and lives in fear she's going to "give it to somebody". I'm passing whatever information to her mother so she might understand.

rosesinjanuary - I may have missed something. Horse wormer? You said it helped your brother. Can you elaborate? Maybe it would help my relative's daughter?????

nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 9/14/2010 3:00 PM (GMT -6)   
Denise, we ALL feel compassion for Vicparis!

I have to tell you that I think it's extremely inappropriate to make statements like "I guess I am the only one who feels compassion for Vicparis, how very sad." It's not only untrue, but highly inflammatory and insulting to the rest of us.

Having said that though, I want you to know that we all care about you, too....believe it or not. We all need each other....and we need you too. Please just try to be a bit more understanding and compassionate towards everyone here, not just Vicparis.

And Mamyou's right...we need information!! I just read that over 97% of Morgellons patients test positive for Lyme disease...if that's accurate then we ALL need to know as much about Morgellons as possible.

Vicparis, please don't leave this forum! We care about you and your feelings and we need you! So many of us are depressed (me too!) and have thought seriously about "checking out". The great thing about this group is that we can come here and tell each other stuff like that and get help and support! I truly hope that you change your mind and stay.

(((((((((hugs)))))))))))
JoAnn
Lyme Disease, Babesiosis, Ehrlichiosis, Bartonella, AIH, Hashimoto's, lupus, fibro, RA, celiac, asthma, psoriasis, adrenal fatigue, pre-diabetic, Raynaud's, hypertension, osteopenia, sleep apnea, RLS, GERD, DDD, severe lower back pain, cubital tunnel, tarsal tunnel, Suprax, Mepron, Alinia, Zithromax, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Liothyronine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec

autoimmunediseasesgfliving.blogspot.com

Simela
Veteran Member


Date Joined Aug 2010
Total Posts : 552
   Posted 9/14/2010 9:17 PM (GMT -6)   
Well, I feel A LOT of compassion for V., of course!  I feel a lot of compassion for everyone here, as well.  Sometimes I cry when I read stories here and in other places.  The reason I even read the article is because I have had a crowling sensation for several weeks in my lower back. I have disk disease (which I didn't even know about prior to my accident???) and of course, that is one of the places that got brused. Strangely enough, this crowling sensation appeared about the same time that my Lyme symptoms re--appeared. Not sure what to think of it! It is now gone, since I started antibiotics over a mo. ago.

"The Morgellons patients I have seen had surprisingly similar symptoms, with an abrupt onset, often following a toxic exposure."(from the article)
I wish the author would make it clear what he means by "toxic exposure" and would go into more detail on that. I was given 2 steroids shots (bec. of my pain in my legs due to the accident) and was not on abx when this crawling sensations started. Is it Lyme? Is it something else? That's what I am trying to figure out.   Will it come back if I stop the abx?  Has anyone with lyme felt this--something crowling under the skin?  I only felt it in the places that got injured, and not all over my body.

Denise,
Maybe because you feel better than some of us, you are not interested to learn anything about this disease. As it may be related to lyme, I think we do have the right to talk about it here.  That does not make us less compassionate than you. If it is a co-infection, or it is even remotely related to lyme, it would be like asking everyone here that has Babesia, Bartonella, etc, not to talk about those, either because it is not Lyme. People are talking about lots of different things and diseases here that may or may not be associated with Lyme, but may be caused by it or may not even be caused by it.  I really do not feel I should explain myself to you, but here it goes:  When the other poster brought this disease up, I was intrigued, scared, and curious about it bec it sounded similar to what I experienced.  If the other poster would not have brought this up, I would have never known about it.  She was not attacked, by the way.  So I am thankful that she did post about it, because now a few of us know about it.  NO ONE SHOULD BE SILENCED!  My post was not an attack on anyone, it was a link to an article from a reputable source.

Post Edited (Simela) : 9/14/2010 8:38:17 PM (GMT-6)

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