Hi - Introducing myself

[friend08]

Hi, I hope that you are all doing as well as possible under difficult circumstances.

I am visiting here because about two days ago, my friend finally broke down to me, explained symptoms she is having and that she thinks she may have Morgellons disease. (The ulcers, fibers coming out of skin, etc.)

I already knew quite a bit about the illness having researched it when I contacted Lyme disease a couple of years ago.

I believe my friend and I'm very concerned for her. I explained my own experience with regular doctors because she has an appointment tomorrow. I don't want her to be upset if he doesn't believe her. She has collected all the fibers, but if my own experience with Lyme is anything to go by, no evidence in the world will be enough to convince him.

I contacted my own Lyme doctor who is willing to take Morgellons patients but he has a wait list until March 2009!

I just wanted to reach out for support both for my friend and in all honesty for myself too.

I am ready to support my friend both in the struggle to receive treatment and in the road of recovery that lies ahead.

But I am also afraid for her. Lyme disease became a known quantity. I could re-assure her that she would recover with the antibiotic treatment. I could re-assure her that she is not contagious.

I thought that the struggles of Lyme disease, the search for treatment, the disbelief of loved ones, the daily misery of it was out of my life for good. How naive of me. Now my friend suffers and here I am again, searching for answers, hoping that antibitics will at least control/contain the awful symtoms as they have mine.

My friend, (as all of you are, I'm sure) is a vibrant, fabulous woman with a great mind, heart and spirit. She loves life. She is an artist and a dancer. She loves reading the same quirky books as I do, watch the same independent movies.

I hate these 'mysterious illnesses' that are sucking the life out of our communities. I hate this medical system that forces so many of us to self-diagnose and self-treat.

I am sorry that this is so long and thank you all for the chance to vent. I chose to join this site because it seemed the most positive and friendly.

I wish all of you well and hope that you can give me some advice about how you cope with Morgellons in everyday life, how you all manage symptoms and handle the anxiety and so on. Thank you very much.

[Sadsack]

Hello, Friend -
You really are a friend! Did she know that you knew about Morgellons when she told you? How fortunate that she has a friend who knows and is so supportive. That will go a long way toward helping her through this...so many of us have had to endure it alone!
First, can I ask what state you live in? Support groups are just beginning to start in some states. It's a tough thing to do for a variety of reasons, but they are starting.
I hope you made an appt with your doctor, even if it is not until March...you can always cancel it later if you haven't come up with anything sooner. The doctor tomorrow may work out, but don't count on it.
A good place to start is Carla's "treatment steps".
Spend a lot of time looking through the various threads for different needs.
I am pooped (bedtime in the US) and am headed for bed, but will write more tomorrow if you have not gotten enough suggestions or direction.
God bless you...and my best to your friend!
SS

[friend08]

Thank you so much for responding Sadsack! My friend and I live in Missouri. There is a very small Lyme support group that nobody has the energy to sustain because they all have chronic fatigue and mental confusion :P If you know if a Morgellons support group, that would be great.

My friend did know that I had Lyme, but she didn't know that I knew about Morgellons when she described her symptoms. In fact she did not even think to call me and tell me what was happening to her. It was when I called her to see how her Thanksgiving went that she broke down about it. I can't tell you how my heart dropped when she started describing the fibers coming out of her skin. I was like, this cannot be happening ... especially to my friend who just two weeks ago seemed so healthy.

The Doctors appointment went pretty much as I had told my friend it would. In her first consult she had taken him a bunch of information about Morgellons she had found on the web, as well as a collection of the fibers.

Of course, he mentioned nothing about Morgellons in this appointment and told her that all her bloodwork had come back completely normal.

I had already warned her that this would happen and advised her just to stay calm, not to insist on Morgellons because the last thing she wants is him diagnosing DOP and trying to give some kind anti-psychotic meds!

So she stayed calm and said "Well, what do you think I have?" He replied "I have absolutely no idea." He scheduled a follow up for January.

The best thing is that she got him to extend her prescription of doxy for another 20 days. It's not enough but any little bit helps, right?

My Lyme doc's office was closed yesterday but she has promised me she'll call him on Monday. I told her, she could waste her time trying to get help from ten or twenty regular doctors or she can save the money to pay out of pocket for a doc who will actually believe and treat her.

She seems fairly calm, despite the itching, despite the fact of the seeds and fibers coming out of her skin. The abx do seem to be helping. She does not currently seem to have any of the other neurological things ... the brain fog, deep fatigue etc. Is there a period when those begin to set in after the ulcers appear?

My other question ... do Morgellons sufferers experience the 'Jarisch-Herxheimer' or 'Herx' reaction when they take antibiotics as Lyme sufferers do?

I wanted her to take more doxy than the doc prescribed (300mg/day instead of 200mg/day) but I'd like to know just in case she has a strong reaction.

Really, it's been hard for me to think of going out and enjoying my normal life with my friend going through this. I've been researching on the web till I thought my head would explode. I cried my eyes out last night. But it really helps to have other people to talk to about it, thank you very much.

I think my friend is actually handling all of this better than me. She is so calm when I talk to her on the phone.

God bless you all. May we find understanding from medical doctors and most of all a cure soon for these dreadful illnesses.

I have been looking through all the different threads. One of my main concerns right now is helping my friend find relief from the itching.

[carla]

Hi Friend ,
We have a few suggestions on coping with this and she could pick a few things she finds easy to do.
The difference with this and Lyme is this appears contagious.
It is awful for us because keeping the fibers down around your home involves spending so much time cleaning. Not easy when a main symptom is fatique.
We are getting better at finding ways to treat ourselves and natural ways seem the best .
I would tell her to save her money because no Doctors have a clue what this is.
Even well meaning ones are using us a lab rats because they can't cure us.
Antibiotics are keeping symtoms down but as soon as they are stopped people get worse than ever.
Prescription Drugs may actually be opening us up to a much worse infection .
This is just the opinion of a few of us so only she can decide.
She is so lucky to have you as a friend cause being alone with this is hell on earth.
If she can get online give her a link to us. Even if she just reads the post it will give her strengh.
How are you treating your Lyme Disease?
carla
xx
Living with Morgellons-Treatment Suggestions

[Sadsack]

Friend08 -
If your friend has not done the internet research that you have, then that may be why she is a little calmer. The more you read about this the worse it seems to get mentally. Of course, reading about what helps is very important, but the theories, descriptions of some of the more bizarre symptoms, and pictures, are the things that can put someone over the edge.
Was your friend suprised to know you were familiar with it? Did she know what it was called, or did she just describe her symptoms?
I don't know anyone in Missouri, but maybe someone here could be. What you described as the main reason for the failure of Lyme support group applies to the Morgellons groups as well.
I feel so bad for both of you. I pictured what you were going through by your very senstivie descriptions, and both sorrow and rage welled up in me. The rage is because so many people could suffer so much, be treated so callously by the majority of the medical community, and have the government drag their feet on doing anything.
And you are a rare friend. So many of us have lost so many friends and family (as if things weren't bad enough).
A word of advice, if you two can possibly manage it: find what helps and try to focus on that. If you can adopt an attitude of having symptom reduction your main goal and not think about all the other stuff, you will be better off. Too many of us have gotten "trapped" in the obsessive probing and fear cycle that we can't bust loose.
I am a good example of that; I have gotten MUCH better, but my head just has too much "stuff" in it about Morgellons that it has crowded out everything else. Try not to let that happen.
In the beginning, I thought I would "get to the bottom of this" by reading as much as I could, thinking about it all the time, experimenting, etc. All I found is more questions, confusion, and mystery. I discovered very early on that the path (for me) was the natural remedies. Long Dead Sea salt soaks is one example, staying away from chemicals as much as possible, etc. "Toxins" is a part of this. Following that path was the most important thing I had to know.
Write as often as you need to, ask as many questions as necessary. We are here for you.
SS

[friend08]

Hi Sadsack & Carla - thanks again for your replies.

Sadsack - My friend had done enough research to know that she was probably dealing with Morgellons. Yes, she was pretty surprised that I just listened quietly to what she was saying and then agreed that it did sound pretty much like Morgellons. It was a big surprise for her to have someone believe what she was saying.

I tried to stay calm talking to her that first day she told me but I must admit that my heart was pounding and I have been in shock about it. I talk to her every day. We talk about her symptoms (which are a bit improved with the doxy), about the doctors and the different treatment options.

Yesterday we spoke at great length and I tried to share with her as much as possible about my situation with the Lyme disease ... the search for doctors and my despair. She said if this did not go away she did not want to live with it. I told her that I had also had suicidal thoughts at the beginning of my illness, but that if I had done that, we would not have met, we would not have shared all our laughs and fun times together. I would not be here now, talking to her.

I talked to her about the need to take care of herself, rest, drink plenty of fresh water and that we could develop some kind of 'care plan' together to boost her immune system and see what helps with the symptoms. I bought a really nice book of 'Power Prayers for Women' as a gift for her yesterday, thinking it would be good to remember the spiritual component. Reading through it myself last night really helped me too I have a friend who has agreed to teach us some meditiation techniques.

I remember a lot of the Lymies would do 'detox' baths or foot baths. They were very careful with diet, not drinking sugary drinks or eating carbs and I see Carla's treatment list has a lot of suggestions. I'm going to print that out for her.

But this is just too big for us to handle ourselves. I have asked her to make the appointment with my Lyme doc. Even if it's not till next March. He is an amazing doctor. He will not push antibiotics on her if she chooses to go a more natural route. He is willing to try alternative methods and we need someone to guide us, no matter what.

I had advised my friend to limit her time on the Internet, Sadsack. I told her that if she should choose to visit a support forum that she had to be careful and make sure that the majority of posts are focussed on positive helping rather than an overly pessimistic view. I did not take my on advice about not surfing the net too much but I really appreciate the help I have found here.

Even if this is contagious, there is no way that I can isolate my friend and refuse to send time with her. How could I possibly do that to her? I remember I was also afraid to share drinks with my family and be intimate with my boyfriend because some people think Lyme is also capable of human to human transmission. I remember the fear and the loneliness. There is no quality of life if it must be lived alone ...

I already promised her that we would try to do some nice things together because I want her to feel like herself, that her life is not all about this illness. I want her to remember that there are still new and beautiful things to see and do despite all of this. It's hard for her to believe right now though.

Are there certain precautions you think she and I should take to reduce the possibility of passing the illness to others? She still has family and many friends who want to spend time with her. She's afraid to let people in her house because she thinks it's infected. How do you guys think it is transmitted? By skin to skin contact? By inhaling the fibers?

[Sigh] Another long post. Sorry guys, I hope I'm not tiring you out!

[Sadsack]

Friend08 -
You are not tiring anyone out. If someone hasn't got the energy to read/respond, they will move on. I skip over posts that are just too long, not relevant to my concerns, too convoluted, etc. We all pick and choose.
You are approaching your friend's situation with great sensitivity and wisdom.
The person to person contagion of Morgellons is still controversial. Drs Wymore (and Casey), Dr. Staninger and her staff, Dr. Kolb and her staff, Ginger Savely & Dr. Stricker have all had personal and repeated contact with Morgellons for years, all without contracting it. Some insist it is not contagious, some of the others say if it is contagious, it is not "readily contagious".
With people with Morgellons, I have spoken to some who have partners and children who have not been affected. Some have even been intimate with their partners and sleep with them every night.
Then there are others where the whole family is affected, but most of them seem to have had a simultaneous exposure to whatever causes this. Two families that have been public with their affliction - the Dills and the Kochs - describe it that way.
But there are others, the minority, that state that one person became infected, then months later one of more others did also.
It SEEMS that the infection comes from the environment and not person to person, much the way a mold toxicity would occur. So it is possible that, if the "infective" were in the house, that visitors could contract it. So you might encourage her to do things with family in neutral places - restaurants, etc.
I don't have family around (they live quite a distance) but I would love to be able to meet them somewhere.
And you are so right about the importance of detoxing. All this junk that we have coming from our bodies are toxic, and there is probably more INSIDE than in the skin layers. Additionally, if our bodies are full of the toxins that are "out there" anyway, how can our bodies heal/deal with whatever Morgellons is?
SS

[Franky]

Friend08 I just wanted to leave a quick note, right now. First of all, thank you for joining us here and looking for help for your friend.

I truly know how you feel, as I was in the same situation as you! In fact the genesis of this of site was based on the same story. I build this site for my friend and others like him, who seek more information and support from others.

You are a good friend and person indeed.