The Other Side of Morgellons

"I'm just getting started"

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The Nameless

I remember many years ago reading an article about those that experience severe trauma together and bond forming (for example plane crash survivors and survivors in general forming strong bonds).

 It’s a subject that runs through my mind here and there when I think of us…we that have formed bonds because we have been through something so traumatic, strange and life changing that an affection and trust develops for one and another based on the idea that we understand that no one, unless they experienced it themselves, will ever, understand. It. Ever. As though it’s carved into our hearts and you can see it in another only by feeling it.

 It’s as if we the traumatized individuals become more acceptable to ourselves and to each other. The trauma its self even becomes more manageable when you feel you are understood from the perspective of one that experienced /or  is experiencing, the same trauma.

  For about a minute I tried to find the psychology behind it. I want to understand it because I feel it (I think?) and I want to make sure that I’m not a weirdo that only see’s outsiders fit for me (though I do admit I am fond of the strange).

 I had one whole basic psychology course in college and the only thing I remember about it was the day the guy that sat in front of me had a seizure and the “teacher” yelled at him for disrupting the class.

 But I AM  armed with a heart that formerly was so completely shattered, that the strong bond that formed while putting the pieces back together made me into something else. That something is nameless.

 I end with nameless because I don’t really know the words to use that give this kind of strength justice.

 I do know that some of you that are reading this have that nameless strength.  I also know that some of you that are reading this are the very glue that my own nameless strength is made of.

 I searched for answers. I say searched as in past tense, because I’m done searching. As of right now. I answered my question with a question to myself:

 “But didn’t you always love mystery anyway”

There were no answers because I couldn’t find the right words.

 I searched the internet using search terms like trauma and bonding. I found something called Traumatic Bonding which is associated mostly with a victim bonding with their perpetrator (for instance a hostage with their captor).

So that was a wash.

 I then turned my search to Collective Trauma. It didn’t fit either. Maybe it will later.

 My next search involved the concept of soldiers and the “war buddy bond”.

The war buddy bond came closest to what I was looking for but to me personally, it still didn’t fit because I myself became well because of the war.

 I am not a Lyme Warrior or a Morgie. Neither of those terms offend me, I  just don’t identify with them.

I did learn from writing this post that I also don’t need to identify or qualify my feelings.

 What I was really trying to do was to prove to myself that my strong affection, the love I feel for some of you,  is based on something better than the concept:

“I like you because you understand me”.

And maybe (maybe means yes) the kind of bond I feel, the kind I’m trying to understand is human love and human bonding and that I am very capable of that and none of us are outsiders in anyway; And that today this all looks strange but perhaps later will not be inexplicable at all. And most importantly that if it never gets explained, I’m fine with that too.

I’m not one to quote the bible often because I don’t care to abuse the bible by missing the metaphor or cherry picking or getting lost in the literal, but, there is one often quoted and well known verse that feels appropriate right now…

 For now we see through a glass, darkly; but then face to face: now I know in part; but then shall I know even as also I am known.

The Universe

A Christmas Card To Those In Pain

This Christmas I’m thinking of you the most.  I’m speaking to my Lyme and Morgellons friends but also to all of those that live in chronic illness. I know you might be in bed right now reading this. I know you may have not been out of the house for days. Maybe weeks. I know you might be thinking you need to bathe but you hurt too much and you don’t have the energy anyway. Meanwhile you’re watching all the lights go up…in photos…on Facebook…your lifeline…on the net…out of “real life”.

I know some of you are watching all your friends and even former friends and maybe even what USED to be your family doing Christmas activities, getting their hair done, buying gifts, and choosing fancy outfits while you lay there and your pajamas hurt your skin and your bed feels like it’s made of nails.

You may have taken every cent you have in maybe money or strength and splurged on an outfit or hair cut, because you still “look good”. It might be something that you still have left… that you “don’t look sick” and that someone might still see that because surely they have not seen your invisible illness. Years may have passed and still they may have not seen it. If that’s you then fix your your hair or do or get whatever it might be.You deserve it.

You might be thinking of your former self and what you used to be able to do and how Christmas used to be. Or what you used to be able to buy. Or you may be thinking of what you never got because you were very busy being a professional patient. You may have missed a lot of Christmas’s  because  you spent that time in  the badlands of Any Place…choking down the band aid pills they gave you to shut you up. You might be feeling like a car that’s been wrenched on by a shite mechanic; They fix one thing and blow three others out.

You might not to able to pick up your child and tickle them or you may not be able to pick them up from soccer practice. You may not even see them because your family was torn apart while you could not get out of bed to try and save them. And they could not understand why you could not get out of bed or how to save you. You may even be a child yourself. Or you may have lost your childhood somewhere between a wheelchair and emergency room visits.
Perhaps your career, life and family aspirations got lost between fatigue, pain and financial strife.
I know. And I am thinking of you the most today on the eve of Christmas.
What you’re watching is only The Christmas Olympics (I just made that up but I think it works).
Everyone is running fast, shopping, wrapping gifts, attending parties and you might be in bed watching it.  Or you’re participating with what little energy you have left and will pay big time for a month.

Despair may try and crash your door down. Do not let it in. This Christmas card is my virtual and humble attempt to arm you.
It’s just one day. It’s only Christmas. It’s one day that is meant to be every day and I promise you that there are more than a million others thinking and living very nearly what I’m trying to write about.
I know who you are; YOU are the essence of Christmas and I love you the most.
Please know that you have so much love to give that Christmas is a God given cake walk. And we will walk this walk together.

Best to all of you. Hold Fast. Godspeed. But most of all love, so much love to you. Tina




On the Subject of Despair and Love




Disclaimer :  I cried into my keyboard and now lack the ability to make full stops or commas

Please excuse the absence of these

I started this blog when I first went into Lyme treatment and initially used it to work through my physical and spiritual pain

As I worked through that and made progress I then tried to do what my true intent was

That being to help others and to become what I needed for myself when I was hurting

I had a lot of trauma and grief and am recently  experiencing a different kind of despair

In this blog I had set out to help and support others

What I received was a huge outpouring of support and love and it saved me

I’m not asking for that again

I am simply crying out loud to the universe

To God

To Mother Nature

To humans

And to whatever other mysteries are out there

Writing has always been cathartic for me and I have a lot to let go of at the moment (that moment took years to make)

Forgive me (but please hear me) as I use this blog to untangle myself again

I don’t need to say what my despair is about

Each persons despair is their own and can be relative and not relative to another’s

It does not need to be qualified

It does not need to be incredibly awful to be acknowledged but it is my own experience that when another human does acknowledge another’s pain (may that pain be “small” or “big”); It does lighten the burden of the one that is suffering

My message here in this post is love

At the end of the day it’s almost all that matters

Hold onto the love you have in your life and if you don’t have love in your life find some now

Find love in a wag of a dog’s tail or in a majestic tree or a tiny flower and most especially try to find love where you thought you lost it (it is most likely not lost but only misplaced)

I’d like to think that when it comes time for me to leave this place and I per chance have some time to ponder my life; It wont be about how clean I kept my house or how hard I worked or worry over what I failed to do

I would like for it to be thoughts of how much I loved and that I didn’t miss a chance to tell someone how phenomenal I thought they were or that I never forgot to say “thank you” and “please” and most especially “you are welcome”

This blog was made for the chronically ill but I think all of the above applies to the theme of this blog

It applies to all humans because we will all find ourselves in pain and we will have to find a way to find a light to guide us out; I say that with full respect to all those that need time to mourn: Even if that sadness takes a lifetime

(As my pal Oscar said: Where there is sorrow there is holy ground)

I hope that you all can find some love and beauty today in this complicated and sometimes difficult thing of the business of living life

And I thank you all for letting me cry out loud (full stop) I thank you the one that let me cry my guts out on your virtual shoulder (full stop) You know who you are (full stop)














Hello and let’s catch up!


I’m in another country….again!

Hello again!
I have not been active on this blog as I have hand my hands full.
There have been some big changes and it will take me a bit to catch up and I will get that info on this blog ASAP.

First of all I have been spending most of my time in a group I have on Facebook.
It has been more helpful for me and others as blogs are difficult to negotiate and find info.

In this group on FB there are others besides myself that have recovered from Morgelllons.

It is a low drama, loving and supportive group of people.

The groups main thrust and focus is on healing.
We do not discuss theories.
We do not ridicule each other.
We do not debate.

We share information regarding healing, hope, support, love and friendship.

This group is also on secret status.
What this means is that no one will know you are in the group.
It will not show you are a member on your personal FB page.

I have chosen to keep it on secret status to protect  the privacy of those that are trying to save careers, family, marriages etc.

If this group sounds like something you would like to participate in you may message me or leave a comment. I will then email you and give you directions as how we can get you joined.

I have a lot of catching up to do to get this blog current.
Stay tuned. Much love and hope to all, Tina

Kerry! An Amazing Young Lady With Lyme Disease


I’d like you to meet Kerry, she’s 19 years old and she has chronic Lyme disease.

When Kerry was 12 years old she caught a cold and it turned into what SEEMED like a very bad flu.

It NEVER went away and in fact became worse.


Her illness progressed and by age 14 she had lost the feeling in her legs and ended up in a wheelchair.

Doctors had no explanation for what was wrong with her and suggested to her and her parents that she was making it all up.

Then a bit of a lucky break came.

A lady that Kerry’s mother worked with suggested that she get checked for Lyme Disease.

It turned out that Kerry DID in fact have Lyme Disease.

In addition to Borrelia, Kerry has Bartonella and Babesia.

These infections are just the ones she has tested positive for so far and it is likely she has others.

She never had an EM rash and there is no memory of an insect bite that proceeded or seemed to be attached to her illness.

So far she’s had five PICC lines, one life port and currently she has a Hickmans catheter for daily antibiotic infusions. She is also on a special diet and has piles of supplements and things she must do to heal.


She is often in pain and quite sick and suffers seizures, often many in one day.

I have been following Kerry on Face Book as she documents her journey.

Most of the photos and videos are of her smiling and hopeful but I have seen some that were difficult to watch and she is jerking and twitching and her speech is slurred.

This young lady has been through a lot and obviously it could not be summed up in a blog post but this video is a peek into what she’s been through:

The healing is slow and is hard going but progress IS happening.

Late last month I saw several posts that gave me so much joy.

The feeling is coming back in her legs and when I saw her wiggle her toes it was an amazing thing.

Then I see another post and guess what (with the help of a walker) she’s standing up AND……..


next I see she is  WALKING short distances.

To watch this young lady heal is one of the most amazing experiences.

She’s still very sick and has a long road ahead of her but at least she has a road in front of her.

I don’t even want to think about what would have become of her had someone not suggested she

get tested for Lyme and I really can’t stand the idea that there are many sick out there that have no idea they have Lyme disease.

Lyme Disease is far more common than most understand and It is called the great imitator because it can mimic almost any other illness.

It affects each person differently and I would like to point out that while this is Kerry’s experience with Lyme, another’s experience can differ greatly. I say this because if you or someone you know thinks they might have Lyme don’t decide you don’t because you aren’t as sick as Kerry.  Lyme comes in every degree and flavor.

Lyme Disease is the sixth most common reportable illness in the Untied States and it is estimated that it is 4 times more common than HIV.

Lyme Disease can cause meningitis, kidney and gastrointestinal problems, paralysis and psychiatric disorders and it can be fatal.

Most Doctors don’t know what to look for and the test is notorious for giving false negatives. DO NOT be deterred by a negative test.

Meanwhile those sick with Lyme have been left out in the cold and forced to pay outrageous amount of money seeking private care. For many that can’t afford private care, they are forced to live sick and suffer. Until the CDC and ISDA acknowledge chronic Lyme Disease and change their guidelines, The insurance companies are getting away with murder for denying payment for treatment.

Each year, more than 30,000 cases of Lyme are reported to the CDC however the CDC has recently admitted that number is roughly TEN TIMES HIGHER than previously reported. I often think about those 300,000 and the even bigger number that have been misdiagnosed.

In the meantime can we get some prayers, high fives and good vibrations for Kerry?

I’m rooting for this young lady in the biggest way and I do believe I picked a winner.


Lyme Rage

Whatever Morgellons disease turns out to be, for me it was a blessing. It taught me I have Lyme disease.

I get sad when I wonder how many people out there have Lyme and don’t know it.

 How many people just think they’re only crazy lazy, or stupid.

 I wonder how many people are in mental institutions or prison or just lost in their own house (until they lose their home) because Doctors have failed to accurately diagnose them.

Who’s fault is this?

I know my own private Doctor is a good Doctor and a kind Doctor and she truly didn’t know what Lyme disease was or that I had it.

 She could have never diagnosed me for an illness she knew nothing about.

Who’s fault is this?

Is the Center of Disease Control really that powerful?

I watched the video below and I saw myself and my life in those people and I realize I’m crying because I’m angry that I let Doctors, so-called specialists call me crazy. I took their pills and I did what they said and I believed them when they said I was I imagining the pain and it was only stress that caused me to get lost in my own neighborhood.

For myself I lost a lot of time to Lyme.  I’ve had it for most of my life.

If I told you what I’ve been through, it might make the hair raise on the back of your neck.

I can’t say I lost my life because I’m better than that and I’m bigger than Lyme and I would like to think I transformed my illness and got as much good as I could from it.

The problem for me is when I think of my lost time and I multiply that by an unknown number from all the people who have Lyme. That’s when I become outraged.

That’s a lot of lost time and potential.

If not for Lyme, my sister would have been a Doctor and when you start adding up the number of sick and multiply that with collateral damage, it starts to get ugly.

Meanwhile America is going to the dogs and I wonder how many of the sick could have been watch dogs for liberty, only they can’t get out of their beds.

How did this happen?

Is the CDC really that powerful?

Call me crazy but this humongous fuck up doesn’t feel like an accident and yes I’ve gone back to swearing.

I cleaned up my gutter mouth for a long time because I realized people don’t listen when you swear and I thought it was just more graceful;

But this disaster is an epic disgrace and “I am myself the matter of my book”.

I see videos like this and I get mad, I just don’t know what to do about it. I’ll keep talking and probably cussing until I figure it out, thank you for listening.

Please watch this video of two Vermont farmers suffering with Lyme disease.  It’s less than 10 minutes of your time.

lyme rage

About Me and All My Errors

I’ve been going through this blog and trying to correct the many errors. I started this blog at the same time I started my Lyme treatment.  I had moved back to the USA temporarily to seek medical care and I was staying on the fourth floor of an apartment building with a broken elevator. I had planned on documenting my treatment and focusing on writing about healthy cooking. I was sick a lot of the time and most of my focus and energy went into healing and negotiating the stairs. I was on a lot of medication which  included having to inject my self four days a week and keep a bunch of medicines straight on a complicated schedule. I didn’t have a car so I walked everywhere and had to carry my groceries up the  stairs. I also usually had my 100 pound dog in tow.  I slept on a blow up mattress and when that went flat, I slept on the floor and then the desk for the last month before I could return home. I was sick, home sick, alone, lonely AND antisocial (really bad combination).  My only support was phone calls from London. What I am saying is that it was hard going and I was herxing a lot of the time and my neurological issues flared in a big way. I used the blog more for venting and support as I tried to untangle my feelings. I never got around to talking much about my Lyme treatment or preparing excellent food for you. I really am a very good cook and I’m sorry that I haven’t quite shown off my skills here in this blog like I wanted to. I’ll  eventually get around to that. Theres’s lots of time and after all my mantra is “I’m Just getting started”.

When my Lyme treatment was over I traveled back to my home here in Ireland where much of my time and focus has been put into getting this old house up and running. I still don’t have a desk and my kitchen is in temporary mode. I am in fact still living out of plastic bins. On top of that I have been traveling a lot. Partly because it’s fun and partly because I’ve had to. I am on visa status which makes me an obligate traveler. I have been in five countries (maybe 6) in the last year and a half.

So bear with me as I go back and edit posts. I will eventually get to all the errors. I will also get to writing more specifically about  being treated for Morgellons and Lyme disease.

I have truly had my hands full and it is just now that my life has calmed down to a nice and regular way.

I have already edited a few posts and my “About Me”. I’m still laughing at my third grade level writing in some of my posts.  If you want to laugh too you better go back and see all my errors now before I go back and fix ’em.  Really I should leave them because it’s a testament to how debilitating Lyme Disease can be and the fact that I can spell now and speak in complete sentences is a testament to my recovery.

Here’s the cleaned up version of “About Me” on my profile:

My name is Tina. I am 48 years old. Sometime ago I found my self  sick with Morgellons and Lyme Disease. I was very sick and for a long time I couldn’t find a Doctor that could tell me why I was so sick or to take my health complaints seriously.

Though I had been bitten and paralyzed at a young age by a tick, it never occurred to me that I might have Lyme Disease.

When my skin started acting strangely with non-healing painful and itchy lesions I started to learn that the fibers and specks in my lesions and coming from different parts of my skin were associated with a disease called Morgellons .

This was very difficult because I soon found out that there was not a Doctor in all the land that would treat me. This went on for a while and I became more and more ill.

At one point I learned that many people who have Morgellons and when properly tested do test positive for Lyme and other associated co-infections. I made the decision to seek out the care of a LLMD (Lyme literate medical Doctor).

This was a move in the right direction for me. After being provoked with antibiotics for several weeks I was tested and did  test positive for Lyme. It was a massive relief for me and for the first time I had the right to be treated by a Doctor. It also explained a life time of bizarre symptoms.

Prior to that I was caught in the awful go no where nightmare of living sick and in and out of the emergency room when it got really bad.

The ER would put me on an antibiotic IV and stabilize me with fluids and I would soon be back in the bad position of trying to find a doctor for regular care.

All that changed when I was given the appropriate lab tests and appropriate medical care.

It has been a long and difficult journey getting my health back with a lot of tears and some laughing too.

I was able to recover from the horrible skin and systemic symptoms associated with Lyme and Morgellons but I do have to be careful.

Plant medicine, detox, immune support and diet have been a big part of the recovery of my health but truly my medical care has been integrative as I was treated with some very strong pharmaceuticals in Lyme treatment.

I have been free of Morgellons symptoms for quite some time now but it did involve much work and time. I do feel like I still have some minor issues that are Lyme related but honestly I would be embarrassed to complain about them.

Today, compared to where I was just a couple of years ago health wise, is an amazing and much healthier place. I’m actually healthier than I have been in many years. I am grateful to be pain-free and clear skinned again.

I had such horrific skin symptoms and such a difficult time with Morgellons and getting medical care that I do have residual trauma. I am trying to transform this trauma as I engage the complex issues surrounding Morgellons and Lyme Disease.

Because food is my passion and was part of my healing process I have decided to try to focus on that. It is my opinion that when dealing with chronic illness it makes a lot of sense to make your food as much as part of your medicine as you can. I am not suggesting anyone go with out medical care, only that diet is a good place to start.

I stand for health and food freedom. As our food supply becomes increasingly processed and tainted and our lives more compromised from dealing with chronic illness we are less able to acquire and prepare clean, whole real food. I see that as a vicious cycle.

My dietary choices are not rigid. I eat real food. It doesn’t have to be raw, cooked, vegan, Paleo, juiced or gourmet but it does have to be real, whole, mostly fresh and unadulterated food. All strict diets and the occasional snobbery attached to them is not what I stand for. I also have a lot of respect and gratitude for food and realize that while I struggle to find clean real food there are many on this planet that struggle to get clean water. The word organic, when applied to chemical free food sometimes bothers me and the status that has been somehow attached to it. I do use the term “organic” to indicate to others what we mostly agree organic food is (clean).

You will find a little bit of everything  here as I try to unfold the long story of my recovery and what I did to return to health. More than anything I hope that I can offer you some hope that you can find your way back to health and you can do so in the company of others that are also in various stages of healing ranging from barely holding the pieces together, slowly finding the pieces to put back together and just finding some peace.

When I started this blog I had just started Lyme treatment. I was often sick and very stressed. As I read back now over old posts, I’m horrified (and laugh at myself a lot) at my spelling and atrocious grammatical errors.

To add to that I am barely computer literate.

I have gone back and started editing some of the posts that read like they were written by an 8-year-old. My apologies for the ones I haven’t gotten too yet. I’m hoping you’ll go easy on me. For a long time I had some pretty severe neurological and cognitive issues. I still transpose letters here and there and make mistakes but I see them sooner now than I did before and my spelling , memory and all that in general is 90 percent better.

If you read through the blog from the beginning, you’ll see my spelling getting better and mistakes happening less.

While it is embarrassing, it’s the truth and part of my recovery and part of me.

I am always “just getting started”.

I have been saying that since I was a kid. I was big into swimming and at swim team practice we always competed to see who could hold their breath the longest. I could always hold my breath longer than anyone on the team and that includes even the older boys. My secret was just at the moment I thought I couldn’t hold my breath any longer, I told myself  “I’m just getting started” and somehow mentally that made it easier to keep holding my breath.

Now you know my secret weapon. One of them that is 🙂

Thank you for not laughing at my nutty ways, or my spelling.


Hear From Three That Have Recovered From Morgellons

I would just like to quickly share this message from Mel.  I think it’s always a good thing to hear from others that have recovered from Morgellons.

He and two others will share their stories and also be open to questions


Welcome as always.

Despite a minor health setback, (see Prayers for Mel)

I have decided to hold this conference call as planned.

We will have a panel of three people who have been completely cured of our disease for an extended period of time.

Kathy has confirmed her participation (see A POSITIVE MESSAGE FROM AN ORIGINAL WARRIOR). Our second guest will be confirmed this weekend.

I will be the third, our other guests will tell you their own stories in their own words.

Mine is here for all to read (see MY STORY)and therefore will not take the teleconference’s precious time to tell.

When they are done, every one of our listeners will be given an opportunity to ask questions of our quests, myself and John B.

I hope you will all be able to attend.

The call is Sunday, August 25th at 8:30 PM EST (7:30 PM CST, 6:30 PM MST and 5:30 PM PST).

Dial 1-218-862-1300 and input the conference code 664059.

We believe that these conference calls are extremely important as they provide an enormous amount of information in a short period of time. If for some reason you are not able to attend, no worries – as always, it will appear in the Conference Call Archives.

I look forward to seeing you there!




40 Pounds of Salt For 5 American Dollars

I would buy these 40 pound bags of salt and plunk them down next to the tub. I got them at Wal-Mart in the garden section for less that 5 dollars (it’s for water softening but the solar salt is 98% pure).  Don’t run out of stuff to add to your bath, especially when you’re making progress.

I added a lot of stuff to my bath. For ideas click HERE. Even when I thought it was gone I kept up with this. That “keep kicking it even after you think it’s dead” technique paid off for me. You wont have to do it forever but don’t quit too soon. Don’t be paranoid just don’t back off too soon. Don’t give it a break, it wont give you one.

This post is just about a simple inexpensive item to add to your arsenal. I bathed with lots of stuff and made my bathes strong. You can also get the big 40 pound bags of pool salt for about 5 bucks. Add some lavender and or tea tree oil to really kick its ass  to be fancy.

PS:  A great price on tea tree oil is at Walmart. 2 ounces for 8 dollars

PPS: I can’t believe I’m advertising for Wal-Mart but while you’re there you can pick up Epsom salt and Borax. Or get it anywhere. These are just some things I kept stocked up on so that I could stay ahead. The take away for this post is beat it even after you think it’s dead.


Menthol Menthol Menthol

I think it was Clear Blue Skies John that found the effectiveness of menthol and when others found they worked the word spread fast. You can use these for a variety of things.  Mostly these are good for the environment and seem to take the itch down a notch and for some all the way. You can treat your home and car by closing it off and vaporizing them well. Do not breathe it because it can get very STRONG. I was treating my closet and I opened the door nonchalantly and the vapor hit me like a line backer!

In the United Kingdom you can purchase a little jar for el cheapo at nearly any chemist.

menthol-crystals Online in the US you can 4 ounces for $15.50 here.

There are a variety of ways to use these and because Ayla does such a good job telling you how to do it without burning your house down, I will link you to Ayla’s site here for the instructions.

For the menthol info just scroll down. You will also find a large amount of practical self-help information there at her site.

Another thing is if you want just a little vapor menthol vapor and want to be able to stay in the room you may put just a small sprinkles of crystals in an electric or candle oil burner.

oil burner