Re: ok, some tips and some confessions

[Guest guest]

,

There is a huge learning curve for all of us with this, whether it is birdmites or Morgellons, or whatever it is has or any of the others here. It is all complex and tenacious. Over 2-1/2 years into this and I'm still learning a lot from what others share.

KJ, thanks for sharing about pink oil too. I might try that. Also thank you for sharing the information about the new Lyme Disease testing. We were diagnosed by testing, but I have wondered about getting tested after treatment, to see if we still HAVE Lyme disease. I am hoping more and more doctors start to use this new test, especially if it is more sensitive to Lyme than the other tests available. So sad that so many people who have Lyme Disease never get a diagnosis and then never start a treatment for it. It does not go away by itself and continues to ravage the body.

Re: ok, some tips and some confessions

I just want you to know how much I appreciated this post. Your tips and most importantly your outlook give me hope.

Bless you and everyone here who takes the time to share. I wish I could be more of a support to others but I a still on a steep learning curve.

SBGirl

On Dec 31, 2010, at 2:48 PM, morgnmore wrote:

, Your reasoning is sound about your skin at night. Nighttime when we are at rest there is nothing - unless we take measures - to protect uninfected areas. It was in bed at night that I was first violated by these creatures. I mean, I had had the biting, crawling, itching, but that was the last straw. I bought and used everything on the pharmacy, pet store, hardware store, cleaning supply store, grocery store, health food store, shelves. You name it, I've tried it and either sat it back on my shelf or thrown it away in disgust or terror, depending on my body's reaction to it. I am fortunate to have a wonderful goddaughter who happens to be black, and one day she asked if I would get her some Pink Oil for her hair. Pink Oil is a black hair lotion made by Luster. I get it at Walmart or at beauty supply stores. It is availabla at sallybeauty.com.Before I would buy it for her, however, I naturally read the ingredients: beeswax, linalool, limonene, sulfur, omg, I thought, I"m getting some of this stuff for myself. Even with the small amount of paba it contains, it is still one of the least lethal products in my arsenal.For a decade it was a part of my daily protocol. It protected me from lesions, in conjunction with wearing long sleeves and pants and never ever wearing flip flops, that is. It also stopped the personal violations and restored a little of my will to live because of this. Pink Oil has never given me an infection, either, nor have I had any reaction to it other than good. It is not a cure for morgellons, but it has been one of the key tools for me in holding the line against their otherwise near rabid advance. Limonene and linalool, btw, are the active ingredients in and one other brand of insect sprays, and I used them in my enviro battle till I found better combos. Have you ever touched raw beeswax? It is very very sticky. I think that is what the Pink Oil has that other things do not, and that makes it work like quicksand. It does not kill them, but it immediately cuts off their oxygen and they are distracted from biting, lol! It is not hard like Eucerin, so they cannot just punch through and walk on it. It's not a thin liquid like Jergens, so they can't just swim through it. They are kind of, just, stuck in it.Then I discovered that the antimicrobial stuff they sell for toenail fungus stops biting - but not crawling. But I knew I would be using too much of it to pay $17 for 4 oz. so I found Jefferspet's Agrilabs Foot and Hoof Rot Spray, about $6 and shipping for a freaking quart, and it is almost exactly the same strength of the active ingredient benzalchonium chloride - slightly weaker, but it works great mixed with the Pink Oil. And it did help reduce the biting, but I was still getting bitten. So I started adding 100 % Deet in small quantities to the mix and that was the ticket. At first I sprayed the liquids all over me and my clothes, a fine mist, then I would apply Pink Oil. Over time that evolved to mixing both in the Pink Oil in a bowl I keep on my dresser. Note on this: I put only pure Pink Oil on my privates. Not the tri-mix of Pink Oil, Agrilabs spray, and insect repellent. Nothing else has ever worked as well as just the Pink Oil for this purpose except Vicks VapoRub (now there's a rush, girls!) but I think it is healthier than that much menthol, there especially. I have to say that I did two things as a result of being trashed here because I have adopted maintenance procedures. The first is that I stopped using this wonderful product that gave me so much relief. None of the substitutes (most of which I had tried and rejected as ineffective years before most of those here got here) worked half as well. The second is, I left this group. It is easy for someone who has had a disease, granted a horrible one, for a month, a year, even a few years, to tell me that I should just get with the program, do what they are doing (that for the most part did not work either - and I could not afford to jump on untried bandwagons after 20 years of throwing every penny and hours a day on fighting this. This is a numbers game, and it was years before I even knew what I was dealing with. Twelve years into the battle, in 1998, I first heard the word colembolla after looking up on the internet until I found something that looked like what I found in my ear and coming out of my foot. At that point, I was a decade in. I found safe2use.com's scabies board and read all the letters, dozens of them, which seemed like a lot at the time. I also found a treatment history recorded by a man named Mr. X. He was very methodical and his was the first such account I ever read. Yet it was some of the short letters that gave me a tip here, a tip there. My kitchen cabinets were covered with the tips I found, and the recipes. I emptied my house, got rid of everything, including my bed. I bought a twin platform bed and built a fortress against the bugs. I developed a formula that I sprayed on all porous surfaces, after finding a tip in an allergy products catalog. I rented an apartment, which is what first put me finally into credit card debt to the point that i could no longer recover. You know what I'm talking about - this ain't cheap! Gosh, I wish I had every dollar back that I spent on things that I thought, or that someone swore, would "cure" me. I am grateful for all of the advice, effective and not, mostly because I was no longer, after all those years, alone. I am also grateful to it because even the things that did not work taught me things, led me to solutions that worked better for me.To those who think I am not trying to get over this - I know where you are coming from, and when newbies come to my library group, critterfiles, I steer them here, and tell them to take heart, that if they listen to you here, they will be well long before me. I am so glad you are here for them, too.I'm still working full time, thank goodness, and at 59, am in an intense study group preparing for a professional certification. Instead of sleeping, I am writing a novel (isn't everybody?), several blogs and short stories, a play as a vehicle for a remarkable friend of mine, and take my mom to the doctor in my car, which always smells like peppermint and, probably, borates! In my spare time, I fight critters. But after 20 years, they do NOT get my whole life, my whole day, all my thoughts. I used to try and toss, try and toss. I learned from Rita to give the more promising protocols some time to work, and to do whatever is necessary, even if it is way outside of my experience or comfort zone. I learned from Willow to keep an open mind, even about things I had tried and discarded as ineffective. I learn from Bill all the time, our emissary of grace and a walking database of what works for whom. Frito learned to be methodical just as I did, but I incorporated some of the way she thought into my own research. Mel is a relentless warrior. I learn from Ian that I am, in all ways, not alone. I learn from Larry that talking to each other helps us feel human. I learn from Marie to be persistent in sharing my truth. I learn from Trish that sticks and stones...well, you know. I also learned how thin my skin really is, but I am back, to a limited extent. N ow I am a part-timer not for the reason I left, which was the judgmentalism and anger that periodically turned in my direction, but because I have a life. It is not a perfect life, and my therapist says I am slowly killing myself by not sleeping, but that is why I'm in therapy - again! Back in school to work on my emotional intelligence!!!OK, this has been really long, and if you have made it this far, I think you are a masochist! No, really, I think you are amazingly patient. Before you think about coming back at me ever again, I'm going to tell you this: I don't care. I care about getting well. I care about the lifelong (I hope) friendships I have made here. I care about being able to be myself about this crap in one place on this planet, and that is here. So judge me, holler at me, whatever floats your boat. BACK AT YOU. I'm not going anywhere, you're stuck with me, so just bless you!katiejill aka kajay (just one "y" y'all) aka KJ

[Guest guest]

Hi SBgirl,

I think you will be glad you will be seeing Ginger Savely. I've heard really good things about her treatments. I used to talk to a woman who was really financially strapped who had mites and Morgellons. Ginger gave her huge money breaks in her treatments. This woman was very, very, very ill. As ill as anyone I've heard of with mites or Morgellons with lots of lesions. I met her on another board. She was improving a lot when I talked to her last. That really impressed me about Ginger. I posted the testing because I wanted anyone to see that this Lyme business is not straight forward... standard testing probably isn't all that accurate either and I believe Ginger uses IGenex to test for Lyme. The sooner you start to treat for it if you have it, the better. You can be really proud of yourself for how far you have come.

Re: ok, some tips and some confessions

I just want you to know how much I appreciated this post. Your tips and most importantly your outlook give me hope.

Bless you and everyone here who takes the time to share. I wish I could be more of a support to others but I a still on a steep learning curve.

SBGirl

On Dec 31, 2010, at 2:48 PM, morgnmore wrote:

, Your reasoning is sound about your skin at night. Nighttime when we are at rest there is nothing - unless we take measures - to protect uninfected areas. It was in bed at night that I was first violated by these creatures. I mean, I had had the biting, crawling, itching, but that was the last straw. I bought and used everything on the pharmacy, pet store, hardware store, cleaning supply store, grocery store, health food store, shelves. You name it, I've tried it and either sat it back on my shelf or thrown it away in disgust or terror, depending on my body's reaction to it. I am fortunate to have a wonderful goddaughter who happens to be black, and one day she asked if I would get her some Pink Oil for her hair. Pink Oil is a black hair lotion made by Luster. I get it at Walmart or at beauty supply stores. It is availabla at sallybeauty.com.Before I would buy it for her, however, I natural ly read the ingredients: beeswax, linalool, limonene, sulfur, omg, I thought, I"m getting some of this stuff for myself. Even with the small amount of paba it contains, it is still one of the least lethal products in my arsenal.For a decade it was a part of my daily protocol. It protected me from lesions, in conjunction with wearing long sleeves and pants and never ever wearing flip flops, that is. It also stopped the personal violations and restored a little of my will to live because of this. Pink Oil has never given me an infection, either, nor have I had any reaction to it other than good. It is not a cure for morgellons, but it has been one of the key tools for me in holding the line against their otherwise near rabid advance. Limonene and linalool, btw, are the active ingredients in and one other brand of insect sprays, and I used them in my enviro battle till I found better combos. Have you ever touched raw beeswax? It is very very sticky . I think that is what the Pink Oil has that other things do not, and that makes it work like quicksand. It does not kill them, but it immediately cuts off their oxygen and they are distracted from biting, lol! It is not hard like Eucerin, so they cannot just punch through and walk on it. It's not a thin liquid like Jergens, so they can't just swim through it. They are kind of, just, stuck in it.Then I discovered that the antimicrobial stuff they sell for toenail fungus stops biting - but not crawling. But I knew I would be using too much of it to pay $17 for 4 oz. so I found Jefferspet's Agrilabs Foot and Hoof Rot Spray, about $6 and shipping for a freaking quart, and it is almost exactly the same strength of the active ingredient benzalchonium chloride - slightly weaker, but it works great mixed with the Pink Oil. And it did help reduce the biting, but I was still getting bitten. So I started adding 100 % Deet in small quantities to the mix and that was the ticket. At first I sprayed the liquids all over me and my clothes, a fine mist, then I would apply Pink Oil. Over time that evolved to mixing both in the Pink Oil in a bowl I keep on my dresser. Note on this: I put only pure Pink Oil on my privates. Not the tri-mix of Pink Oil, Agrilabs spray, and insect repellent. Nothing else has ever worked as well as just the Pink Oil for this purpose except Vicks VapoRub (now there's a rush, girls!) but I think it is healthier than that much menthol, there especially. I have to say that I did two things as a result of being trashed here because I have adopted maintenance procedures. The first is that I stopped using this wonderful product that gave me so much relief. None of the substitutes (most of which I had tried and rejected as ineffective years before most of those here got here) worked half as well. The second is, I left this group. It is easy for someone who has had a disease, granted a horrible one, for a month, a year, even a few years, to tell me that I should just get with the program, do what they are doing (that for the most part did not work either - and I could not afford to jump on untried bandwagons after 20 years of throwing every penny and hours a day on fighting this. This is a numbers game, and it was years before I even knew what I was dealing with. Twelve years into the battle, in 1998, I first heard the word colembolla after looking up on the internet until I found something that looked like what I found in my ear and coming out of my foot. At that point, I was a decade in. I found safe2use.com's scabies board and read all the letters, dozens of them, which seemed like a lot at the time. I also found a treatment history recorded by a man named Mr. X. He was very methodical and his was the first such account I ever read. Yet it was some of the short letters that gave me a tip here, a tip ther e. My kitchen cabinets were covered with the tips I found, and the recipes. I emptied my house, got rid of everything, including my bed. I bought a twin platform bed and built a fortress against the bugs. I developed a formula that I sprayed on all porous surfaces, after finding a tip in an allergy products catalog. I rented an apartment, which is what first put me finally into credit card debt to the point that i could no longer recover. You know what I'm talking about - this ain't cheap! Gosh, I wish I had every dollar back that I spent on things that I thought, or that someone swore, would "cure" me. I am grateful for all of the advice, effective and not, mostly because I was no longer, after all those years, alone. I am also grateful to it because even the things that did not work taught me things, led me to solutions that worked better for me.To those who think I am not trying to get over this - I know where you are coming from, and when newbies come to my library group, critterfiles, I steer them here, and tell them to take heart, that if they listen to you here, they will be well long before me. I am so glad you are here for them, too.I'm still working full time, thank goodness, and at 59, am in an intense study group preparing for a professional certification. Instead of sleeping, I am writing a novel (isn't everybody?), several blogs and short stories, a play as a vehicle for a remarkable friend of mine, and take my mom to the doctor in my car, which always smells like peppermint and, probably, borates! In my spare time, I fight critters. But after 20 years, they do NOT get my whole life, my whole day, all my thoughts. I used to try and toss, try and toss. I learned from Rita to give the more promising protocols some time to work, and to do whatever is necessary, even if it is way outside of my experience or comfort zone. I learned from Willow to keep an open mind, even about things I had tried a nd discarded as ineffective. I learn from Bill all the time, our emissary of grace and a walking database of what works for whom. Frito learned to be methodical just as I did, but I incorporated some of the way she thought into my own research. Mel is a relentless warrior. I learn from Ian that I am, in all ways, not alone. I learn from Larry that talking to each other helps us feel human. I learn from Marie to be persistent in sharing my truth. I learn from Trish that sticks and stones...well, you know. I also learned how thin my skin really is, but I am back, to a limited extent. N ow I am a part-timer not for the reason I left, which was the judgmentalism and anger that periodically turned in my direction, but because I have a life. It is not a perfect life, and my therapist says I am slowly killing myself by not sleeping, but that is why I'm in therapy - again! Back in school to work on my emotional intelligence!!!OK, this has been really long, and if you have ma de it this far, I think you are a masochist! No, really, I think you are amazingly patient. Before you think about coming back at me ever again, I'm going to tell you this: I don't care. I care about getting well. I care about the lifelong (I hope) friendships I have made here. I care about being able to be myself about this crap in one place on this planet, and that is here. So judge me, holler at me, whatever floats your boat. BACK AT YOU. I'm not going anywhere, you're stuck with me, so just bless you!katiejill aka kajay (just one "y" y'all) aka KJ