The Other Side of Morgellons

"I'm just getting started"

Month: November, 2012

My Morgellons Routine: A Quick Clarification on Cleaning, Post # 3

Before I go into my regular bathing routine I want to do a little catch up and clarification on the subject of cleaning. It has occurred to me that because the first part of this series has so far only addressed a couple of cleaning issues one might think that I consider these points a priority. This is not true. I have never at any point been one to go over the top cleaning. The only time I really went crazy cleaning was when I had to stay in a temporary studio when I returned to Los Angeles to undergo my Lyme treatment. It was a filthy 100 plus year old building. It was six floors of humans, dogs, cats, mice, roaches, bedbugs and other various insects including flies, fleas and mosquitos. It was not well maintained (to say the least). The building was what I considered to be a bio hazard. It was disgusting but they took dogs and they allowed for a month to month lease and It did have a certain brown stone building charm. It was disgusting.

If you live in a home or building like that, I would say YES, you might want to try and clean or move. I know this is not possible for everyone. If you are a super slob with piles of junk everywhere I would say it might be a good idea to clean up your act. I have found a little organization makes everything in life much easier. I do understand that the nature of Morgellons makes it difficult for the Morgellons sufferer to keep things together (I was there).

I do (and will always) keep my sleeping area as clean as possible. I also like my bathroom to be clean. Other than that I am a half slob.  In my regular life you can easily find me covered in dirt, grease, food, paint or some other something from the many projects I like to do.

In my past and current life cleaning is about the last thing I will be wasting my energy on. I hate cleaning. It is the most boring, monotonous and uncreative thing that humans are cursed to do. Thats why I have some simple things I do. For those that clean from morning to night, I am only just glad I have better hobbies than them. In my mind, things like white carpet and pristine homes are just disasters asking to happen. Awk!  Ahhh….but to each his own

It seems that those that have tried the insane cleaning routine don’t seem to be able to report any kind of increased wellness. Mostly I hear them say they just became exhausted.

Something that has always been clear to me is that the itch and what ails me is coming from me.

I will tell you that most of my itch came from fibers in my skin. I know this because when I had that unrelenting itch, I looked at that specific area with a scope and found fibers there. I am not saying that there are not insects involved. I do know that bugs love me and they always have. This is the reason I keep my sleeping area very fresh and clean. I do not want to be dealing with dust mites. I don’t want to flip anyone out but do know this, bugs are everywhere (even on you). This is a fact of life.

To be clear, I keep my sleeping area clean because I spend a minimum of 8 hours of my life there every day. I also have a four footed shadow friend (my dog), so I keep my sleeping area as clean as possible. That’s just me, it is probably different for you. I just wanted to clear that up.

As far as “Nothing makes it out of my laundry alive”, I am more referring to dust mites and MOLD spores, which quite possibly, terrify me more than Morgellons and definitely more than Lyme. I still believe that it was my exposure to mold that brought my immunity down to a point that I became as sick as I did. Not everyone is mold intolerant or was exposed to mold so you will not be the same as me in the needs of your environmental routine.

While on the subject of mold I should say that because a tree fell on my house (literally) while it was empty some years ago, there was a temporary dampness problem here. Like I said, That concerns me. Mold is extremely toxic and because I had a past bad experience with it, I will not take mold lightly. That is the main reason I mist and clean my house with the cleaner I make (all three ingredients kill mold). I don’t have fibers in my house and believe me I have looked. I don’t even have fibers on me anymore.

I only wanted to be understood on that point in regards to how, what and why I clean.

I know I said I was going to be clear and simple in this series of “My Morgellons Routine” and I intend to be. I just started to get the idea that people might think I am some kind of clean freak or think I am trying to “kill” Morgellons in my environment, because I talked about laundry and the spray cleaner first. It is actually what I consider the LEAST IMPORTANT part of what healed me from Morgellons. I wrote about my laundry routine and cleaning first because I happened to be mixing up and restocking that area of my routine. In later posts I will be clear to say what parts I feel helped me the most and I promise you, it was not cleaning my house.

Thank you for letting me blab on there…OK…sigh….smile….as I gather my thoughts…

Morgellons is complicated and in sharing information there is a danger that some people will take what I say wrong or assume that what I do for myself will make them better. I do not want that to happen. We are all own selves, with our own lives and bodies and how and where we live are as unique and different from each other as the snow flakes are.

No one person experiences any illness the same as another, not even the flu treats people the same. This is why I am always clear to say that this is my routine. With any illness and especially something as complex as Morgellons or Lyme, I find it a mystery that anyone could think they have a protocol that works for everyone. The very word protocol makes me laugh. Protocol? It is a funny sounding word. When someone asks me my protocol I am always a little dumbfounded. I will never be some kind of arrogant person that thinks I have the answers that will help or repair anyone in their extraordinary, unique and mind blowing existence on this planet.

Still it is true that there are some basic and similar things that many of us that suffer from Morgellons have found helpful. There are also some safe, sound, tried and true strategies that help all humans to keep good health. When we share our stories and our lives, others can observe and try and adapt parts that can fit into their individual life.

For anyone that hasn’t read the posts before this one, please click here to start at the introduction. The posts are numbered for clarity after that: https://livingwithmorgellons.wordpress.com/2012/11/28/introduction-my-morgellons-routine/

Next post up is “My Morgellons Routine: Bathing Post # 4”.

https://livingwithmorgellons.wordpress.com/2012/12/01/my-morgellons-routine-bathing-post-4/

My Morgellons Routine: The Multi Purpose Spray Everything Cleaner post #2

The post after this one (#3) will be my bathing routine but I first wanted to put this spray recipe up as it is also a part of my bathing routine. This all purpose spray cleaner is a part of just about everything I do in my home in regards to cleaning.

I mix it myself and it I use it for everything. It is very inexpensive and simple to mix. I will get a little more into what I do with it but I first want to tell you how I make it.

The ingredients are:

2 Cups white vinegar

2 Cups enzymes (will give more info below)

One Tablespoon borax

Mix the above ingredients up in a plastic pitcher that has a pour spout. This makes about 24 ounces (which is about one standard sprayer full). I use any old sprayer and I make a bunch at one time and refill all my sprayers. I keep one on the kitchen counter, one in the bathroom and one in my bedroom. You might consider keeping one in your car as well.

This is the only cleaner I use and it keeps things really simple. I clean the bathroom, kitchen and floors with this. I mist my bed and pillow with this. I mist the air and cracks and crevices with it. It works, It is inexpensive and it is non toxic. I actually spend very little on my cleaning supplies (giving me more of a budget for my supplements etc).

This all purpose spray does it all for me. I even use it on myself and my dog. After walks I use it to get the mud off my dogs feet. Sometimes I will put a few squirts on a paper towel and give him a quick wipe down to pull extra hair off and just polish him up. This is also great to spray in pet areas.

If you have itchy skin this might help, it did help me with my past itchy bouts. Also you can use this to add to your laundry if you wash on cold (heat kills enzymes).

I can not say enough about enzymes. They are my favorite way to clean. I make my own and it is basically free because I use leftover fruit peels. Link here for directions: https://livingwithmorgellons.wordpress.com/2012/08/02/fruit-enzymes-2/

If you don’t want to make your own enzymes you can easily purchase them. I am going to give a link to Morgellons Aid (which had all kinds of excellent Morgellons relevant information). There he has such an excellent post up about enzymes that I see no reason to repeat what he has done so well. The link I am providing goes to a page where he tells you all about enzymes, the brands, and links to get them. He also provides a great recipe and tips. Link here: http://morgellonsaid.wordpress.com/topical-treatments-2/enzymes-skin/

While over there at Morgellons Aid you will find a lot of great easy to use information. I really like his site a lot.

So there you have it. A simple recipe for one cleaner that does it all. In the post to follow you will see that I use it for a lot as I go through all the little sections of my Morgellons routine.

Best to you, Tina (link to the next post in this series below)

https://livingwithmorgellons.wordpress.com/2012/11/30/my-morgellons-routine-a-quick-clarification-on-cleaning-post-3-2/

My Morgellons Laundry Routine: Post # 1

I make my own Laundry powder. The recipe is as follows:

1 cup borax

1 cup soda crystals

1 cup soap flakes

I put these in a plastic tub and keep a tablespoon in there for measuring. On a smaller load I use 2 Tablespoons and 3 for a larger or more soiled load.

To my whites, lights, linens and towels I add a teaspoon or so of pool shock.  Yes, pool shock is not so natural and all that but it works for me. I most often add a half cup of white vinegar as well. While it is true I am probably making a bomb in my washer machine if one was to ask me if I cared my answer would be a resounding “NO”. Just be careful not to breath it and expect holes in your clothes if you use too much or put it straight on the clothes. The holes will tell you that you used too much (and I am only half joking).

The clothes I wear most often are white or light so the faded bleached look is what I rock lately (around the house). I have Several old pairs of jeans that I wash in this same manner. Nothing makes it out of my washer machine alive. I can not guarantee that you will have my same success but it couldn’t hurt to try.  On my darks and nicer clothes I skip the pool shock and add extra borax and vinegar. I just wear these clothes less often (when I need to look normal or want to look nice). My motto lately is if you are a piece of clothing and you can not make it through my wash then you are not cool enough to be in my wardrobe.

All these ingredients are very inexpensive.

The borax I buy in 25 kilo bags here n the UK. While in the states I use 20 Mule Borax (I use borax for many things as you will see in following posts). On the soda crystals you can buy them in any grocery store in the UK. In the States Arm and Hammer brand makes washing soda (do not confuse with baking soda) and you can get this at some grocery stores and places like Target and Wall Mart. For soap flakes I buy Dri-Pak brand Soap Flakes. This is a UK brand and not all grocery stores carry it. You can buy it on Amazon UK. In the States you can buy generic soap flakes bulk online from any soap making supplier or alternatively you can get a bar of any good old fashion real soap and grate your own. Use the smallest part on the grater and it comes out fine. I do not love “Zote” brand or “Fels- Naptha” but they do work. I like plain old unscented real hard milled soap. There is always a “soap lady” at your local farmers market. “Zote” and “Fels-Naptha” are brands of bar soap you can find at the grocery store in the laundry section. I just don’t love them and thats just me. Don’t knock yourself out or fret picking a bar of real soap. Just get the soap that is easiest to get started and as you get into a routine you can refine and customize as you like. All this stuff might seem like a lot at first and it is best to change things over slowly, no matter what you choose to do.

Morgellons is a very frustrating condition and it is best to slow down and make changes as you can at a slow steady pace.

I do realize that many of you are in a compromised state right now. Some of you are flat out disabled. I was there and I understand this. Your brain might be on over load. Don’t feel like you have to run out and buy or do everything that people online (including me) talk about.

You might not even have to change the way you do laundry. For me I did not find massive amounts of fibers in my house. I also did not see bugs (except for this one old building I lived in and OMG what a night mare). I just decided to take the worry out of my life and also eliminate that constant wonder in the back of my head. If there was something in my clothes or environment, I wanted to only be careful. This whole laundry thing is my routine and I keep it up. I don’t plan on changing the routine any time soon.

I guess that’s the key for me is having a routine. I don’t want to think about this Morgellons nightmare anymore. I want to live my life. I don’t want to stay up all night researching. I don’t want to keep switching and trying new stuff. I did have to in the beginning because something wasn’t working.

The point I am making is to make slow steady changes that work for you and your life. Bring these changes in little by little so you don’t feel overwhelmed. You will be more likely to follow through. If you have to take a whole month or more to implement a “switch-over” then take that time. Before  bringing another new thing in try and get comfortable with the things you are already doing. The less you have to think and concentrate, the better.

This post is just about laundry. In the following posts I will be addressing other switch-overs I made. As I said in the introduction I will try and be simple and clear because I know you are most likely overwhelmed. For the battle worn Morgellons pros out there,I know this is old news to you. In the comment section lets think about clear simple tips for the newly sick. Please lets keep to the basic topic of laundry so as not to overwhelm. The comments are a great way to share information. As I said this way of doing laundry is just my way. Hopefully as time passes the comments will develop and people will share what works for them. What are you guys washing your clothes with?

The next post is a simple, non toxic multi purpose spray recipe with only 3 ingredients (I use it for everything, including me and my dog!)  Best, Tina (link to post # 2 in this series below or scroll down below comments and hit “next post”)

https://livingwithmorgellons.wordpress.com/2012/11/29/my-morgellons-routine-the-multi-purpose-spray-everything-cleaner-post-2/

Introduction: My Morgellons Routine

This post is simply an introduction to following posts.

In following posts I will write about what I do to maintain my health and ward Morgellons off. I will do it section by section so it is hopefully clear and easy to find in this blog. Much of this information will not be new to most of you, however it has occurred to me that there are many people that have only just recently discovered they have Morgellons and also not everyone has the time, know how or gumption to sift through the forums.

In the following posts I will handle one specific issue per each post and I will keep it as simple and straight forward as possible. The title will state the subject and I will also number the posts for clarity. The chronology of the posts are not in any particular order of importance as I do not know which really is the most important or even necessary for that matter.

I have to be honest on that point. The things I will talk about in the following posts are what I do for myself. I am not a health professional or medical practitioner in any way. None of this is to be misconstrued as medical advice and I can not say that what has helped me will necessary help you. Consider these posts just my own personal thoughts as I talk about my health and my journey of healing from Morgellons.  We all have to find our own way and what works for us while considering where we are in our healing journey.

I do think it is safe to say that no matter how you choose to care for yourself it is important to find something that is within your means. Let me be clear on saying that Morgellons is a long haul and what you do needs to be sustainable. For me personally I found that I had to almost wear Morgellons out and get well little by little. It does take time..and changes.

To get well there is not a lot I have not done. That is not to say you will have to do what I did. I was in Lyme treatment and that did help my health. However, I was well on my way to being symptom free from Morgellons before My Lyme treatment. There is no way I can say exactly what part of what I did helped me to recover my health.

I am at this point symptom free and have been for some time. It took a lot of work and time and as you will find in the following posts I do much to keep it that way. While on that subject though I will say it really isn’t that much. I have made changes in my life and do things differently now. I call these “switch overs”.

Because many of us have such different experiences and symptoms with Morgellons not all of the following posts will be of use or interest to you.

Many of the posts will seem very basic and simple. They are meant to be that way with clear basic information on a specific Morgellons issue. As you may well know, Morgellons is complex.

Once again I would like to emphasis the following posts are what I do currently to stay well. This is why I call it the routine. What part of it keeps me well, who knows? I just do it so I don’t have to think and worry about Morgellons. I have a way that I do things and It has been working for me and if it’s not broke..why fix it.

In the following posts it would great if those of you reading them left comments with information pertaining to the subject matter of each post. You have all been through the ringer and have found clever ways to handle the many and complex issues of living with Morgellons. This way the people that come to these posts will also be able to benefit from all your information, mistakes and successes.

Also those of you that are new do not hesitate to ask questions in the comment area. Those with Morgellons have compassion and understand what you are going through. I only ask that we all try and keep the comments and questions relative to the post.  I ask this just to keep things simple and clear.

Finally I would like to say that if you are very sick with Morgellons your best chance of receiving any kind of meaningful treatment will be from a Lyme literate physician. I also believe a good a naturopathic Dr is another way to go (personally I believe it is the best way to go but that’s just me). Until Morgellons gets put on the map most doctors are not going to understand and even believe how sick you really are. This is a sad and hopefully will change soon.

The First post in this series is simply about laundry. The title is ” My Morgellons Laundry Routine: Post # 1″.

As time passes and sooner rather later I will put up more posts about specific areas of my recovery and my Morgellons recovery and routine. Please feel free to make requests or ask questions and I will answer you as clearly as I can. Just know that my answers and posts are only my personal experience and it is not the way, it is only my way. Best to you, Tina (link to post # 1 in this series below or scroll down below comments and hit “next post”)

https://livingwithmorgellons.wordpress.com/2012/11/28/my-morgellons-laundry-routine-post-1/

Welcome To Camp Tina’s Eating Establishment

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“camp chef”

I have been cooking one pot meals since my kitchen is in boxes and I have little counter space. Things are under construction here and it doesn’t make for pretty photographs. These have been my excuses for not putting food posts up.

Tonight I decided that is a really lame excuse.

First of all because even on a camp stove some pretty delicious food can be made. Secondly and more importantly, most of the food I have been preparing as of late is perfect for a person on the mend.

It’s perfect because I use one pot. There is no fussy prep and no big clean up involved. I make extra so there is plenty for leftovers. This  is ideal for the person that wants to take it to work or freeze half of it or work the left overs into a meal the next day.

The soup I made tonight was all that and to top it off, every single ingredient is good for you.

I am going to tell you the ingredients and a real quick how to but before I do I am going to say this makes a big pot of soup and it might sound like there is too much garlic or ginger but there isn’t and it works. With Morgellons I just want to gently remind you that garlic and ginger can be your best friend (and of course turmeric).

Gather:

5 sweet potatoes

1 hand of fresh ginger

1 head of garlic

1 bunch of fresh cilantro

1 can of coconut milk

2 tablespoons coconut oil

2 heaping tablespoons of turmeric

sea salt

cracked pepper

cayenne

Peel and dice the potatoes and throw them in a big pot or Dutch oven.

Crush and peel garlic cloves and throw it in (yes the whole head).

peel and slice the ginger and throw it in.

chop the cilantro and throw it in.

Add your can of coconut milk

Add an additional 2 cans of filtered water.

Cook your pot of soup on medium high for about 20 to 30 minutes.

At this point you can take a potato masher to it if you want a chunkier soup. The Ginger will remain whole however. I hit mine with an immersion blender. Alternatively you can scoop some or all of the chunkier bits into a blender then put it back into he pot. That does make for a bit more clean up though.

At the very end is when I add the cayenne, bit by bit until I get the flavor and just a touch of heat. It really works with the sweet of the potato.

Now I am not trying to get all fancy but honestly you can make this soup very pretty and serve it to guests even.

A swirl of cream, a sprinkle of cinnamon and a few cilantro leaves and your off. Now I must be off as I have to serve my dinner guest!

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“Sir, would you like cracked pepper with that?”

I Was Falling and You Caught Me

I took my dog to swim in the sea today. I wanted to get to the part where no one goes so he could be off the leash and it would just be us.

To get to that part of the shore, it takes a little trailblazing. I have to go down a steep bank along side a creek. It has been raining so it was slick and with my rain boots being rubber and all I slid and nearly got dumped into the creek.

I was saved when I grabbed onto a tough bushy plant basically growing out of rock. I used the plant to lower myself down and found my footing.

When I looked up at the plant and realized what it was I laughed and thought to myself …”exactly and of course”.

The plant I was looking at was Japanese Knotweed, the toughest she plant around. Japanese Knotweed reproduces with tough rhizomes that can penetrate the most unforgiving terrain.

It grows anywhere and it grows fast. It is difficult to eradicate and no one wants it around because it can destroy foundations and overtake native plants. This is why they call it an invasive species and think it’s a good idea to throw Roundup on it.

The funny part of this story is the reason I went for the walk was because I was ditching this post that I have been trying to write about resveratrol.

Then ten minutes later, there I go sliding down the bank into the hands of Japanese Knotweed which is  one of the places resveratrol comes from and according to Stephen Buhner, it’s one of the best places if you are treating Lyme.

If you have read his book “Healing Lyme” you will see it is at the top of his protocol.

I didn’t  follow his protocol exactly but I did borrow from it and resveratrol was one of my picks.

For those of you that know my story of recovery, you know I did a lot but with a heavy emphasis on medicinal plants. I chose to put japanese knotweed into the mix for several reasons.

After a little research I found that resveratrol is a substance that plants produce when they are under attack by pathogens. For instance, The grapevine will start producing resveratrol when it is under attack from mildew. I couldn’t  help but wonder if this substance might help me fend off pathogens as well.

What really got me interested in Japanese Knotweed was something I remember finding on the internet that Stephen Buhner said. It was so perfect and elegant but I couldn’t find it again.

All day I was trying to recall where or how he said it.

So you know what I did, I sent him a message and asked him and this is what he wrote back:

“Japanese Knotweed tends to emerge in regions where Lyme is becoming endemic; the root of it is specific for Lyme, most especially reducing the brain inflammation that Lyme causes. This is common with many plants and many disease conditions such as sida invading regions where resistant bacterial infections occur.”

How beautiful is that? Not only that he took the time to message back but also what he said.

It is almost as simple as when you are stung by nettle and you rub dock on it to take the sting away. Dock and nettle grow together.

I find it amazing that where Lyme is, there we have this “invasive species” that has this incredible healing power.

It is also a little funny that while many are trying to kill this plant it produces a substance that all those crazy people who want to live forever are paying big bucks for. You may already know that resveratrol is touted as a life extender.

I am revisiting aspects of my recovery because I am trying to figure out which part of what, healed me. I don’t believe I will ever know. I can’t say that Japanese Knotweed was what did it but I can say it did make me feel a lot better.

It made me feel better today when it kept me from getting wet. It also makes me feel better just knowing about it. It makes me understand nature and that there is a rhythm and I do have a place in it.

This is why I care about plants so much. They’re messengers and they go inside me and do mysterious things. I don’t have to know exactly which phytochemical did this or what study said that.

I suppose I am thinking about the more intuitive side of healing and the part our souls understand.

In chronic illness such as Lyme and especially Morgellons, we are often confused as to what to do and we are in it for a long time. No matter what, it is a long hard journey. It has been important for me to find the little gems in the rocky road. It has been important to make my recovery part of my life as opposed to waiting for my life at the end of my recovery.

I think that’s why I chose food. I have to eat anyway, I may as well make it count. I enjoyed cooking before I was ill, so healing myself with plants was not far from the me in my former life. With chronic Illness we are so stripped of ourselves. We have lost a lot. With plants I could keep some of myself no matter how sick I became or who walked out on me. While I did go into Lyme treatment and was treated with some serious pharmaceuticals, I still treated myself with plants and that gave me a sense of empowerment. Also when I was covered in lesions and bedridden and a doctor would not help me the plants were there for me.

I am not suggesting anyone treat themselves or forgo medical care. I am only saying plants have a special place in my heart and along my healing road and they heal me daily. I’m not going to cite any studies about Japanese Knotweed but I will say if you have not read “Healing Lyme” yet, it’s awesome.

Really quick I would also like to say that if you are very ill with Morgellons and are trying to find a doctor that won’t call you delusional, look to the Lyme doctors. My Lyme doctor and others are treating Morgellons as a co-infection to Lyme because many Morgellons sufferers are testing positive for Lyme. Also look to the Lyme naturopaths, herbalists and Ayurvedic practitioners.

For more information about Morgellons disease or to get involved, visit the Charles E Holman Foundation here: http://www.thecehf.org

For more information about Japanese knotweed, Stephen Buhner, the books he has written and his Lyme protocol you may visit his site here: http://buhnerhealinglyme.com