The Hell with Morgellons

MrCommonSense

This is a photo of me over the past summer that my wife took. We are at a 4H event and my two older children (son and daughter) are learning gun safety. That day they were able to shoot .22’s,  a 9MM, and a 20 gauge shotgun. Good stuff.

I grew up among farmers. I was trapping by age 13 on my own, muskrats, raccoons, and fox. Yep, the real deal. We used to go raccoon hunting with dogs by night and as a teenager I can tell you those we’re real Huck Finn days. As I got older I began to hunt deer with a compound bow during the fall/winter. In the summer you would find me in the middle of the night with a buddy floating on the Wabash River in a flat-bottom boat catching channel and flathead catfish, perch, sturgeon, and even fresh water eel (and we ate them all). Man could I tell you some stories …

I was literally afraid of nothing back then. I’m glad to say, I’m coming back around finally. I know many will be turned off by the above historical perspective, but I was raised as a real salt of the earth type. I still live in corn country where round up ready corn and soy beans dominant the landscape. The commercials on my radio are by Pioneer and other seed companies talking about their embedded insect protection (ya, funky GMO stuff). Every year we go to South Florida to a region that has a very high level of Morgellons but I no longer even care. I love the ocean, and nothing, not even Morgellons will keep me from it. We spend the entire week in the water, from sun up to sun down every day on the Atlantic side (big water and big waves).

The hell with Morgellons. It’s just going to have to tag along for the ride because I’m getting on with my life.

I’ve decided I want my old life back, not the trapping and probably not the hunting, but the rest of it I’m taking back. I know full well I could become very ill once again, but I will never again return to that dark place, it has lost it’s grip on me. I promise to stick around until you are able to move on as well. I have some ideas on a new protocol, call it Poor Mans Protocol II which will be more focused on sulfur’s (NAC is a sulfur).

If you need some encouragement and you think you’re never going to find your way out of this mess you’re wrong, you will find your way out. Maybe this can help you in your hour of need. I return to it often. Play track #5 "Lasso the Moon", it’s the most beautiful and comforting song I know @ http://tinyurl.com/yk27qx4 simply click on the song. I highly recommend Steve Amerson’s “Living on the Horizon” CD (that’s his older original CD) for those rough times.

Mr. Common Sense

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Comments on: "The Hell with Morgellons" (20)

  1. I contracted bird mites carrying my first gobbler out of the woods in 1985, rat mites when I allowed my dog to sleep in the basement then come back in the house and cuddle with me (what was I thinking?), then black speck mites in 1997 and fiber mites soon after. I discovered coping mechanisms: that pink oil (a hair product) + agrilabs foot and hoof rot spray (benz.chlor) + legacy herbs insect repellent applied all over under clothing not only stained my clothes pink but also significantly reduced biting and crawling. I found mixing the latter 2 ingredients with water and spraying my clothing with it helped even more. I learned that wearing socks inside pantyhose helped for some unknown reason. I learned never ever to shampoo in the shower but to isolate treatment of my scalp in the sink in the kitchen, to lice comb at least once a day, and to use pink oil (no other chemicals) in my hair during the day, covered by a wig cap and wig. I learned that using disposable sheets is far cheaper and easier on my back than buying all that hot water, detergent, electricity, and time. I found that wearing mid-calf boots and keeping them very clean and dusted inside with green Gold Bond powder complemented the effect of the pink oil mixture, further reducing movement and biting in my shoes. I returned to hunting, often alone, hauling my Summit Viper and all my gear and my GPS into the boonies but never being a great hunter I brought little home, I just loved the woods. Along the way I also briefly had a website called livingwithcritters.com with tips for getting by. Since I did not then but now do believe I’m going to get over this, I finally took down the website. I couldn’t keep it current with all we are learning about how to get better anyway. Instead I started several yahoo groups, one a structured library of articles (critterfiles) and another a raw member driven site I started as a refuge for those banned at birdmitesorg or anyone else who wanted to be able to upload their own resources (files, pics, links). Since then I have found your site and can see that I need to be reading it more than I have been. By the way, I have a photo of a bacillus subtillus taken on my skin and they are very beautiful. I have been photographing a fiber mite, with visible eyes and the c marking the anus, and had it turn and assume an aggressive stance, at which point I had to ask if it was time to see a psychiatrist. I’m writing this so you have an idea who it is who is about to thank you for sharing a photo of yourself, showing that you are a regular and real person with a family, looking healthy, I cannot tell you how important I think it is that you have made this sacrifice. Thank you.

    • Thank you. You sound like my kind of gal katiejill and I want to thank you for your efforts, I am sure you have helped many people, in fact, I remember some of the sites you mention and definitely remember (critterfiles). So you too have made your sacrifice and contributed the help and comfort of many I am sure.

      I am just a regular person and glad this post might help some realize it. I, like you, got caught up in this disaster while happily going about life. My two boys are in scouts (one cub scouts one boy scouts) and my daughter is on the swim team, I go to tons of activities just like all other parents, go camping in subzero weather (try that in a tent !!) and mow the yard, go to work, go to church, and try my hardest to stay healthy, and finally to make sure my wife and children aren’t effected by this while hoping to finally, once and for all, completely rid myself of this.

      This isn’t the hand I wanted in life but these are the cards that were dealt to me. It’s taken me a while to feel comfortable enough to show a real picture of myself. Putting a face behind all these posts I thought might help personalize this a bit.

      Again, thank you …

  2. Wonder if anyone outside the Morgellons Disease discussion at Lymebusters is paying any attention to the mold testing,

    Such an easy thing to do, instructions, who to contact, what to do, all right there.

    What if Mold is actually the Bottom Line? Have you had “bugs” well, Hello! Ever wonder why every flying, creeping and crawling critter around appears to be drawn to your skin? Ugh.

    http://lymebusters.proboards.com/index.cgi?board=rash

    Come visit. Lots of helpful and kind people here.

  3. MCS thank you for all you do!!!!

    I believe this blog is the “light at the end of the tunnel”. We must stay focused and we WILL get better.

    I returned home yesterday from a six day holiday of family. During my visit I ate thinks that I should’nt (sugar,salt,sugar,sugar,sugar).

    I am experiencing joint pain and tingles (smaller version of crawlies) for the first time since changing my diet and following MCS protocol.

    Today back to my forge toward the light. No doubt in my mind I WILL be 99.9% soon. Will keep you posted.

  4. You look very healthy and happy. When I’m able to put all this aside and get back to living I do so much better. Looking forward to PMP II. I’m going back to 2 NAC a day and hoping it will help. I have never taken MMS or silver basically because I’m afraid of any side effects. I’m still having a lot of problems with my scalp and losing a lot of hair. I hope to find something to help with that. When I run my fingers over the hair that has come out, every strand has a tiny bump on the end. Would love to find someone who could tell me what that is – I assume parasites. I don’t believe it’s head lice from what I’ve seen, and my scalp is not itchy, just very very sensitive.
    I always look forward to your posts – that you for being such a great inspiration.

  5. brandicarlene said:

    my personal protocol/regimen-I POSTED THIS A FEW WEEKS BACK ON SOME “SCIENCE BLOG-
    problem is, no one really seems to be using that site and I was hoping that something here (that’s helped me) might help someone else. I have made a miraculous amount of progress over the past 6 months and have not ONE single lesion… please see below if you’re interested:

    October 29, 2009 by Anonymous, 4 weeks 4 days ago

    -Comment: 45847 Hello there! I just wanted to let everyone know that my husband & I recently had a top of the line water purification system/water softener (Rainsoft to be exact) installed in our home & it is doing wonders for the skin. It’s been a life saver!

    I realize that they are expensive… although, if one were to add up the cost of minimally expensive treatments that they have gone through using the ‘trial & error’ method./way of thinking… well, I would be willing to bet that in time it would add up to a comprable amount.

    Not to mention, if you do research on these systems you will find that they help you save money in the longrun. The companies most often always offer some type of financing so that you don’t feel the initial hit between the eyes!

    Also, another costly but effective fix has been our saltwater swimming pool & far infrared sauna. My skin is so clear now that I can go anywhere in a bikini. Even the scarring seems to be disappearing, though I have another secret weapon for that as well.

    People are not going to like hearing this, because this too is not cheap. It’s the Obagi skin care system which you can purchase at dermatologist and plastic surgery centers. It’s a skin bleaching system that WORKS. Not only will it erase even the worst of scars, but it erases freckles and slowly bleaches out tattoos! It’s miraculous! At one point, I never thought I’d be able to go anywhere in public wearing a bikini, & now I practically live in one! That particular product will cost you around 400-600 dollars for the entire kit. Worth EVERY cent.

    I have also found that dieting works. Inparticular, fasting… I would advise (based solely in my personal experience as I am obviously NOT a doctor), fasting at least once a month for 1-2 days. During that time, I opt to drink the “Anew” water because I’m kind of stuck with a couple of bottles of that expensive freaking water, so I figure I might as well use it. Though, ANY type of reverse osmosis water will have the same effect and it won’t cost you an arm and a leg!!! I know everyone also knows to watch your sugar intake-right? I know you hear it… but have you REALLY tried it faithfully? I ask you that because I used to read that, but never really put it into practice. I believe that drinking red wine helps me (although, yes… I know, it’ contradictory considering it’s full of sugar-MODERATION, right?).

    Oh! When you aren’t fasting, EAT 3-5 meals a day. DO NOT skip… The reason? It’s my opinion that whatever this is thrives on a lazy metabolism. I also feel that it thrives wherever there is more fatty tissue. So, if you can exercise-DO IT. Keep reminding yourself like I do to fight through the hurt-you know the saying, “no pain-no gain”! Fight through the pain if you can and work out even if your body is telling you no! UNLESS, of course… your doctor advises you not to. Obviously if you have bad knees, you wouldn’t get on a treadmill and ignore the pain. HOWEVER, if it’s the fibromyalgia that is associated with Morgellons-FIGHT IT. Work out inspite of the pain. I have found that in time, the pay off is worth the pain ten times over. For me, after a month of exercising through the pain, the pain began diminishing! It’s amazing!!!!!!

    I also would advise someone to go from one extreme to another in the way of temperature by any means possible if you can’t afford a sauna, swimming pool, etc. Meaning, do some excercise or anything to break into a sweat, then jump in an ICE cold shower or a bath tup with ice… Keep repeating this as long as you can back and forth. It truly gets the blood pumping and flowing and is invigorating to say the least. If you want to use that method to spot treat a problem area… get and icepac then use a blow dryer (again, back & forth). I am not sure how it works, but I do know it works by bringing much needed relief from the itching and pain. I have found the longterm benefits to be oustanding as well.

    More advice? Get lots of sun!!!!! LAY OUT! Get a TAN!!! I know, I know… skin cancer-right? Well, again-MODERATION! Also, you’d be surprised how many of us are lacking vitamin D these days. Even KIDS! I just saw an entire segment on CNN the other morning about how kids are lacking Vitiman D because we slop on the sun block & basically over protect them to a certain extent. All I know is that when I lay out in the sun, not only do I look healthy, but I feel healthier! As most of you know, those 2 things go hand in hand. I’m sure most of us with this affliction would agree with me on just how powerful the mind is over illnesses.

    Now, MAKE NO MISTAKE!! I am NOT saying that we have made ourselves sick with our minds. Absolutely not! What I am saying though, is that I have found that getting out there and REALLY living vs hiding out like a hermit has brought me back to life as well as restored the color to my cheeks! Let’s face it… when you look good, you feel good (or, at least better). I have self confidence for the first time in almost 6 years. I actually feel somewhat pretty again. Granted, I know I don’t look the same way I did before I got ill… but, I am so grateful to simply look healthy, that even that alone makes me feel pretty once again!

    With that being said, remember the good side of ANYTHING! Meaning, one of the many GOOD things that have come out of me being sick is that I no longer take the little things for granted. In fact, some seem even somewhat monumental. For example, swimming in the pool and up towards the surface as the sunlight beams in the water… wow! Walking through the woods and just looking and listening… the smell… wow! Taking a REAL bath that involves REAL relaxation versus “oh my let me look and see what’s come off of me into the water!”… taking a candlelight bath and truly lying there enjoying it without allowing myself to think about my skin, or dumping 5 million different things into my bath to try and “kill it”… simply lying their and enjoying my favorite scented Victoria’s Secret bubble bath for it’s wonderful smell and soapy bubbles!!! No borax, vinegar, peroxide…. JUST- a BATH!! WOW! You all get the point!

    You know what they say-IF YOU HAVE TO-FAKE IT TILL YOU MAKE IT! Force yourself to do some of the little things you love, & to do them the SAME way you used to before you got sick!!!

    Okay, a couple other things that work for me… CAMPHO-PHENIQUE! It’s for fungus. It’s sold over the counter. Little yellow tube that kind of looks like a neosporin tube. TRY IT! If you need to spot treat, this works. Not only does it pull a lot of this gunk to the surface, but it also acts as a pain killer by numbing the area and even relieving the urge to itch/pick.

    I also have been prescribed Ivermectin by my ID doctor. I personally believe that this helps-alot. The problem is that it’s hard on all the organs and cannot be used frequently!! Those of you buying this poison from your local feed store-CAREFUL!!!!!!! I know, I know… It couldn’t happen to you-right? WRONG! The medicine can be lethal and/or have life altering ill effects if used incorrectly. I realize that most of us are between a rock and a hard spot in the way of medical insurance, doctors who will treat us, etc. Still, educate yourselves if you haven’t done so already. Make sure you don’t do the whole “human nature” thing and use the Ivermectin/Stromectol… have a good week… & then assume the more the better-remember, moderation! I cannot say that enough! I should probably also add that I am NOT telling people to go buy that stuff from a feed store! I’m just saying, I get mine from my doctor every 6 mos or so, use it for anywhere from 7-14 days… and then that’s it!

    My doctor will also occasionally prescribe Albendazole with it (yes, at the same time)… and she also puts me on Doxycycline for at least one wk of every month. Obviously, this stuff is working, but it’s not any ONE thing that seems to be “working”.

    I know this because I did JUST the medicine for years and although there was a TAD bit of improvement, it wasn’t anything even close to where I am now. The medicine, in my opinion, is not “the cake” … in fact, I don’t even think it’s “the icing on the cake”… From my experience, it’s merely been some added sprinkles to the icing on the cake!!

    For whatever reason, it seems that everyone want’s so desperately to believe in “miracle pills/medicine”, when the truth is… the biggest miracle we can get our hands on-ironically, is our own 2 hands… & the body which we’ve been gifted!! Don’t waste it! USE IT! Always remind yourselves the driving force behind pharmaceuticals-MONEY! The driving force behind you’re own 2 hands? YOU, & more importantly-Jehovah! Jehovah is God’s name (Psalms 83:18 if you need proof). LOL!

    Which brings me to my last bit of advice! This one, believe it or not, is the most fail proof protocol/advice I have and it’s FREE!! Prayer… pray, pray, & pray… have faith. Look around this world so beautifully & intelligently designed-a miracle, if you will! If you don’t have faith, pray that you will (I don’t mean that as a joke either). God will help you find your faith, IF you really WANT to find it. It’s a crazy world out there-with or without Morgellons! SO, pray… if you don’t have faith… it’s going to be a bumpy ride no matter how healthy you are!

    Also, remember that God is NOT punishing you or “doing this to you”. He is allowing it to happen, but it breaks his heart knowing that your suffering & he is going to take great joy in relieving his children some day very soon from the pain & suffering that are currently a part of this world. All you have to do to be considered his child… is want to be, & have a good heart!

    I really hope SOMETHING in this helps SOMEONE!!!
    BEST WISHES to EVERYONE OUT THERE suffering in any way, shape, or form!!!! Love & prayers too!!!!!

    ****sorry this is so long, but I feel as though I need to add a foot… note? Okay, maybe it’s a “foot letter”.lol… sorry… hoping it helps…

    ONE THING I NEED to edit/take back… In this post I stated that I went on Doxicycline for a week out of each month. That was not accurate. I USED to do that. Over the past 6 months I have completely quit using antibiotics except when completely necessary (infection of some sort). I feel that my immune system is a million times more effective now that I am staying away from antibiotics… & I should state that I have tested positive for Lyme’s disease, yet still opt not to take the Doxy… If I had to guess the two things that have helped me the most in the way of PHYSICAL health out of all I have mentioned above, I would bet on the exercise & water purification system.

    One more note about meds… At one point the doctor had me on anti-anxiety medication (alprozam XR 1mg 2 times/day). I wouldn’t advise it from my personal experience. After doing a lot of research on the long term effects of such medication I realized that it slows down the metabolism among many other ill effects. I personally believe it’s much wiser to learn coping mechanisms that don’t involve medication. Still, I understand what it’s like to have panic attacks and believe that if it’s used periodically for bad attacks, it can’t hurt. You know what they say, you just have to weigh out the pros and cons for yourself and then decide, but I wanted to share my story/experience with this type of medication. Not to mention, if you DO agree to take these meds, it’s on your chart and you are considered to be “mentally ill’. Just ONE more reason for doctors to choose not to take you seriously (sad & wrong, but true).

    If I had to choose the main thing that’s helped me MENTALLY… it would be my CHOOSING to shift my perspective on what has been going on. Meaning, just living my life again instead of my former ways of pointless worrying (easier said than done-but, it CAN BE done) and “self medicating” (via alcohol-which would explain the detrimental amount of sugar I was consuming at one point-though, I still believe having 1-2 glasses of red wine per day has been helpful to my heart and my level of anziety).

    One of the first things I noticed about my health improving once I began exercising was my veins began showing again… in my hands, arms… yes, likely due to weight loss… but, also likely do to increased ciirculation too wihich was a HUGE problem for me in the past (water weight-swollen extremeties). I look like a completely different person in comparing myself to pictures of me 6 moths back and beyond… & for once, for the better.

    Just please hang in there!!!!!!!! We will all get through this one way or another!

  6. Agree with getting sun with all the UV goodness (albeit risk for more wrinkles and long term damage so be smart about it). Laying out at the beach consistently under the Florida sun for 9 days straight really helped me back in Oct… my only regret is that I didn’t have 1 or 2 more extra weeks.

    I think sauna is key too. If you can afford it, might as well hunt down a good, used sauna on Craigslist. The longer this prolongs, the more money down the drain so why not spend the $1000 now for a sauna that you can use daily that may help you get you out of this mess? I currently go to a gym to use the sauna but it’s a chore to go. I personally believe that UV (sun) helps more than IR from saunas or IR lamps.

    I’ve taken Iver enough times, both pill and horse paste, and cannot decide whether it helps. Iver is for scabies and other parasitic organisms. If we believe morgs to be of some fungal infection, then how does iver help, unless it coincidently happens to work against the morgs culprit.

    “Oh! When you aren’t fasting, EAT 3-5 meals a day. DO NOT skip… The reason? It’s my opinion that whatever this is thrives on a lazy metabolism.” I don’t know why but when I’m eating, my symptoms usually subside. So when I sit at a restaurant and order, I cannot wait to get food! There has to be some logical, rational explanation for why this happens. Any educated guesses anyone?

    • brandicarlene said:

      I know, Kix… Sometimes I wonder if the ivermectin thing isn’t coincidental… I really do. Or, sometimes I wonder if it’s in my head and it’s simply some sort of “placebo effect” that makes me more afraid NOT to take it over actually needing TO TAKE it… does that make sense to you? Still, possibly coincidentally… when I have STOPPED… I have a flare-up. I don’t know!!

      The fasting… I think it helps because it’s really the best way to cleanse the colon and I think everyone probably agrees that it seems as though our bodies have become some sort of bacterial, fungi breading sess pool (sorry-for lack of a better word/phrase). I know I feel a million times better to know my insides are CLEAN… For me, that is the best way I know to do it. It works for me so much better than the products you can buy to help the process along… I’ve tried both.

      It’s funny to me how you said you can’t wait to get your food. I get the exact same way. When I am hungry-WATCH OUT! I need food… and I need it RIGHT away! So, the fasting can be extremely hard for me at times. It takes a lot of dicipline on my part, but being something that I CAN do/control… it makes me feel good about it when I’m done… I know that might sound a bit scary considering anorexia is driven by a similar mentality. Rest assure, mine is different and I am driven by the healthy outcome-not a desire to be grossly thin. I crave muscles and health… being that I used to compete (running 5ks and 10ks)… I love feeling strong… plus, like I also already said-I LOOOOOVVVVEEEE food! It’s just now, I love GOOD food and the feeling I get from making better food choices.

      SO, do you have any guesses on the whole metabolism/eating thing? Also, what are your symptoms like right now… how are you feeling? One more question, do you also eat really healthy? I think everyone has got to consider organic food. What’s your take on that… & I NEVER thought I’d be “on of those”…. until, basically I ended up accidentally eating organic for a time being and saw such great results… before that, I thought it was a bunch of crapola! LOL!! You have got to see the documentary called, “InGREEDients”. You can look up a trailer of it on youtube. VERY enlightening!!! You’ll never look at food the same again!

      Hope you feel good, or better!!!!

  7. Wouldn’t life be great if we all lived in South Florida with backyard salt water pools and could sun bathe everyday? No offense intended BrandiCarlene, I mean that sincerely.
    I appreciate your contributions and I am sure they are helpful. It’s 36 degrees where I live, there is no sun til April and saunas and sunsystems are not requisite household items, tho I wish they were!
    Doctors do not believe this disease nor parasites exist. We are all ever searching and appreciate any advice that comes our way.
    God Bless you and may your continued steps to happiness improve daily!
    I hate the full moon!
    best,
    lamb

    • brandicarlene said:

      Hey Lamb!! I KNOW! I hate the full moon too!!!!!!!!!

      Also, I hear what your saying about living here in FL. Although, I will tell you that I didn’t appreciate it at all until recently when we were able to get a pool. I realize that I’m very lucky for that… because, before we had our own… you couldn’t have paid me any amount of money to show my scary looking sores and scars at a public pool. Everyone would have left! It was a horrific site!!!

      I say that I didn’t appreciate it before because the heat, I feel, heat makes this affliction much worse. I get so hot all the time. I have to keep my air at 70 degrees just to not break into a sweat at times! Which is so expensive here… our electric bill is killing us financially. I guess there’s the good and bad side of anything-right?

      About the hot to cold thing… I have found (before I got the pool) that if I just ran around my house dancing or whatever to break into a sweat, & then jumped in a cold shower or bath… that works too. It really has the same effect… I just guess it’s not nearly as much fun though-right?

      You know what I’ve heard is the best for this? Steam showers… I don’t have one, but I did stay at a spa once that had a steam sauna. It was myself and another woman that had Morgellons. We went in that steam sauna like every 2 hours or less the whole time we staeyd there and we both felt amazing the entire time we were there. Of course, that was back in my drinking era and we were drinking bloody marys at 8 o clock in the morning too… lol! but, I really think it was beneficial (the steam not the bloody marys-lol). The spa even added some Eucalyptus to the steam mix and WOW! That really cleared the sinuses! That’s for sure! It was cool.

      I have wondered about how much it would cost to turn my shower into one somehow… or, maybe they have some cheap thing to buy that produces steam without the added cost of a bathroom remodel? IDK! I will look into it and let you know what I find out!!

      Those far infrared saunas can be financed… though, if your’re like me (and half the country)… & your credit is now ruined… but, if it’s not… the cheapest brand new one they sell is a grand & that’s for one you sit in. I personally regret getting one that you sit in. BECAUSE, I feel that if I had one of the “body bag” like ones… I would use it even more… I heard that you can sleep with part of it on you even and be comfortable. With the sit in ones. it’s a whole big production and you can’t watch tv or anything while doing it. I would recommend people looking into that kind… I guess there’s another one that’s like a blanket too that does the same thing?

      The sun… I do enjoy the Florida sun because it can be relaxing provided there’s water to jump into when you get hot… but, I actually think that the tanning beds work better in the way of clearing lesions. Also, one trick I use that REALLY helps hide the appearance of scars if you need “instant” help for and event or something… I go to a tanning place that has normal tanning beds AND a spray tan machine. It’s called “mystic tan” but there are now many other types too. What I do is go in the normal tanning bed first, then I get out and go straight to the spray tan machine.

      I don’t know if you’ve ever heard of them or even used one?but, what’s awesome about it is you stand there naked with a head cap on your hair… press the button, and wait 5 sec. for the sprayers to start spraying (your in a stand up boot thing and it sprays you perfectly even)… it then stops for a few seconds so you can turn around… and then it sprays your back side too (evenly of course). The whole deal takes no more than 30 second! I like it because unlike tanning in the bed which CAN sometimes make fresh scars look worse at first (and if you tan them too soon after they heal it can make some scars worse… though, the Morgellons scars seem to be a whole different ball game from beginning to end-right? Even down to the way the scars heal) well, the spray tan REALLY evens out your skin tone in all the places the pigment is lost (if you even have that problem)… it’s kind of like having semi permanent foundation sprayed over your entire body. It last about a week or two… but it’s around 10-15 bucs a pop & you can purchase some in a bottle for touch-ups in between to save money and spread out the need for it to be re-done. Also, if you buy a package deal you can get it down to 6-8 bucs per spray tan.

      I’m sure they have those places near you. Let me know if you try it… what you think/thought of it. I know that the few times I have gotten brave enough to opt to go somewhere where I knew I’d have to be in a bathing suit…. I did those type tans heavily (every other day) 2 weeks prior to the event and it worked really well!!!!

      Lastly, Sally Hansen makes an AWESOME “spray on foundation” for face & spray on for legs and body! I LOVE IT! I use it all the time when I just can’t take wearing long sleeves in Fl anymore (when I have just scars but no lesions)… You see, there’s another downside to living here! When I am covered in lesions and it’s 100 degrees out… I can’t wear short sleeves. I think I have probabley at least 30 cardigans/sweat jackets to hide my arms wherever I go. Then, to top it off… I will be obviously sweating and people look at me like “you nut, if you’re that hot take off your freaking sweater!”… but, I can’t. I’ve actually had people say that to me after I have commented on how hot I am… it’s embarrassing. Sometimes I sweat so much that my hair gets soaked around my face and underneath. It’s very gross. VERY embarrassing.

      OH WELL! What are you going to do-right? At least I’m able to leave the house-right?! I just despise getting lesions on my face. The worst one I had was SO HUGE I had to tell everyone I was bit by a brown recluse because it took 2 mos for it to go away!! Then, 6 months later it came back… you can only get so many “believable” spider bites in a lifetime so for that flare up I just hid out for around 3 weeks. It stunk!I know some people are so sick they never even can go anywhere, so I can’t fairly complain… but, iwe all need to vent right?

      Thanks for saying hi and thanks for the encouragment!! May I ask… what’s going on with you lately in the way of lesions…. symptoms… that sort of thing? Just curious!!!!

    • brandicarlene said:

      Oh yeah, Lamb… Why is it that it gets so much worse around full moon? Even my kids notice it. My youngest feels the need to cry “just because” every single time when the moon is full! My flare-ups ALWAYS get worse then, & before/during my menstrual cycle…

  8. Dear Brandicarlene:
    What a great attitude you have!

    I love the following:
    “If I had to choose the main thing that’s helped me MENTALLY… it would be my CHOOSING to shift my perspective on what has been going on” [I believe this mental shift is essential for healing]
    And this:

    “With that being said, remember the good side of ANYTHING! Meaning, one of the many GOOD things that have come out of me being sick is that I no longer take the little things for granted”

    Does anybody else have the feeling that there is a lesson in this whole disease/condition for them? I have the feeling that if I had my old self back tomorrow, that I would go right back to my old habits, which I believe were partly responsible for getting me into this mess in the first place. Everytime I begin to do better, I start to autopilot back to the old me. Slow learner, I guess.
    I keep thinking about the guy who drink the cholera, Mr. “The-terrain-is-everything”. Our physical terrain is intimately linked to our psycho-spiritual terrain, and mine has been broken for quite some time.

    Question for Brandicarlene and anyone else: Do you avoid white sugar and all forms of cane sugar only, or also honey and real maple syrup? What about fruit? How and what do the folks who are doing well eat?

    I think Brandicarlene is onto something with her comments about sluggish metabolism, poor circulation and exercise.

    ps Mr. CS you look terrific and healthy! Way to go!!!

    • brandicarlene said:

      Hi, Susan & everyone! Thank you so much for your kind words, they made me smile and made my day! Thanks to everyone here who gave a shout out… & thank you all for all of your helpful hints too. Thus far, I feel that this blog is one of the most productive & supportive ones out there. It’s SO nice to chat with nice people!!

      About the food… it’s funny that Susan brought up maple syrup! Reason being, we have pancakes with butter and sugar free syrup almost EVERY single morning. We all crack up about it wondering when/if we’re ever going to get sick of them! LOL! The best part is that my husband LOVES making them. He’s so cute about making “the perfect pancake”. The kids and I tease him and have given him the nickname, “Martha”; yes-as in Martha Stewart!

      Anyway, we all eat pancakes (Hungry Jack just add water)… tons of butter… We occasionally switch it up and have eggs with cheese, but we steer clear of bacon these days. Then, about 2-3 hours after breakfast I usually have a snack… some of my usual are organic bean dip with the blue organic tortilla chips… Homemade salsa (you can buy a mix to add to tomatoes and onions for a buc, chop up tons of onions and tomatoes, & wha la! It taste like that yummy all natural authentic kind you get at Mexican resturaunts.(Martha-lol- enjoys making that stuff by the bulk)lol! He literally weighed the amount he made last time and he had made 12 lbs of it! We use it in our eggs, kids eat it on plain bread, with chips, with SO MUCH & it’s especially good for me because my potassium gets extremely low so I have to watch it.

      Other snacks that I eat (& our enitre family) is GIANT bowls of fresh cut watermelon (helps kill the sweet tooth cravings too)! We eat a TON of yogurt (some of us like it with organic granola)… my kids snack on bean burritos sometimes in between meals (they’re small frozen ones-about 150 calories a pop and they fill you up), I also LOVE these somewhat new (well, I just found them at least) frozen vegetable packages that I think are made my Jolly Green Giant? I think… I’m out now or I’d go look… anyway, they make ALL kinds of vegetables with frozen cheese clumps that you cook stovetop till all the vegetables get hot & cheese melts-AWESOME!!! The best part? The bag is HUGE and if you feel like pigging out and eat the ENTIRE large size bag… well, the ENTIRE bag only has 300 calories!!

      If you don’t like cheese they have a bunch of different combos of veggies and sauces for them. They’re also great because there’s not a bunch of junk (hydrogenated oil-etc.) in them. VERY, VERY good!!

      We also eat a lot of hamburgers too… we grill them out ourselves & eat them with a side of vegetables versus fries (okay SOMETIMES we have the fries or tator tots too, but not that often-lol-and we bake them instead of frying them). We eat alot of chicken breast.

      We’ve even started having what we call, “poor man’s dinner” as a way to save money… we do it once a week where all we eat is a baked potato & then everyone picks out a can of their favorite soup (we try to buy mostly organic except for 2 of my kids will only eat one kind of soup & it’s not organic). Let me tell you… we ALL look forward to that dinner! It’s SO CHEAP, easy for me to make… & we are doing a little experiment with it to show the kids how much money per month we save doing it… Also, sometimes we have a dinner roll instead of the potato because my family LOVES bread, but we really try to limit the bread… so, if we have it, it’s literally part of the main course… also, because we eat the pancakes every morning… we really have to watch it.

      We do get most of our sugar from fresh fruits… I don’t use sugar in my coffee but my hubby does… we use honey in our tea and we all LOVE hot tea. Another thing we do that you all might think is weird is drinking hot water with TONS of lemon in it. My mother-in-law got us started on that. It’s SO good, & I have noticed that it (seems to at least) keep my breath feeling/smelling good all the time. On the nights I drink it before bed & wake up in the morning I don’t seem to have that standard “morning breath”. Obviously, I’m sure that cold water and lemon is just as good and does the same thing, but the hot water with lemon just feels soothing… & like I said, we use a TON of lemon in it!!!! In fact, we use lemon A LOT in almost everything we cook now that I’m thinking about it.

      We all snack on raw soy beans a lot… celery with cream cheese or peanut butter… carrots, oranges… pretty much all fresh fruit. Don’t get me wrong, we absolutely ALL splurge on a giant bowl of ice cream once every week or two… You have to!! Our favorite “unhealthy snack” though… is pumpkin pie with whip cream(canned whipped cream is better because it doesn’t have as much preservatives as the cool whip, believe it or not-you’ve problem seen the recent commercials about it?! SO GOOD!!!

      The difference with us and our eating now though, is that we don’t really keep anything bad in the house. If we are going to have a real snack, we make a special trip to the store JUST for that, & we SPLURGE… Meaning, we all have a giant bowl or piece to where it’s just about gone after that one night. Then, we don’t have anything unhealthy to even choose from if it’s not in the house.

      Before, we all used to eat the fruits and syrup & all this healthy stuff I’ve been telling you about… PLUS, we always kept “unhealthy snacks” around on a regular basis… lots of soda, etc. Now, it’s SO limited. We buy a certain amount of soda now, I then take a sharpie and put everyone’s initials on each can that gives us our “soda allowance” for the month. When that’s gone… we drink gatorade (g2) or water… & ALWAYS water only with our meals. Except for “Dad”… he gets to drink whatever the heck he wants because… well, he’s “Dad”!

      I eat between 4-6 meals a day… So do my kids. We couldn’t believe it when we all realized we were eating MORE… but, losing weight. You always hear people say that, but I really never believed it until we tried it and it worked. Our family used to be bad about skipping breakfast. Now, it’s our favorite meal of the day. Especially mine because “Martha” cooks it! LOL!!! I think the carbs in the morning have really helped with our fatigue too… I know that my husband almost seems to have too much energy lately! HAHA! He is always looking for a new project! NO… I am NOT complaining! He jokes that he used to never get off the couch… & now he barely ever even gets to sit on it (& he’s so happy about that-it’s good to feel good again)!

      I should say though… that we were both drinking too much at one point and time and that probably had a lot to do with it. That would be the self medicating I was speaking of. He completely quit drinking, & I just limit my amount to the glass of red wine I mentioned before.

      It’s funny how much being sick does make you re-evaluate and appreciate your life and things that used to seem so small. I bring that up again right now because I now get so excited to sit around our candle lit dinner table every night for dinner! I literally get butterflies in my stomach of the same caliber that I used to have to be going on vacation to get a comparable amount. Crazy eh? We go all out in creating a beautiful amount of “ambiance” for dinner each night.

      I light a gazillion candles, put classical music on playing softly in the back… I get to have my glass of wine (woo hoo! LOL! or, I wait for bubble bath time-& OCCASIONALLY, I do both! LOL)… anyway! We set the table beautifully… use our good dishes… and we make it an event whether we’re eating soup and bread, or eggplant parmesan! We sit around talking and laughing for usually an hour… we also go around the table and do what we call, “our best and worst”. We all take turns telling the rest of the family our best part of our day, and our worst part of our day. I would recommend this to anyone with kids because it REALLY gets them to open up!

      Anyone reading this that’s maybe thinking, “sure, the family thing sounds nice, but I’m a single parent…”. Well, I was too for awhile. My husband and I got back together after a lengthy separation and even when it was just the kids and I we did the whole dinner routine every night. The classical music really seems to calm them down and it’s just relaxing period! Even if you live alone… why not treat yourself nice and light candles, listen to music, etc. You deserve it. The world is so… fast! We all need to find ways to slow time down and breath. I think we all agree that stress DEFINITELY makes this worse?

      I hope I’m not boring anyone with all my little personal details on my”coping mechanisms”. I really just hope that someone else might try it and find it to be as helpful as I have. Sorry this is so long… I just feel so grateful to feel good again and I really believe that some of these things I speak of are what’s helped me the most. Ironic… here I’ve been able to get just about any medication I want from my ID doctor (anti fungals, anti-parasite meds-however you say that-antibiotics, prednisone,etc.) & I finally get healthy by making myself HAPPY again! Not cured… but, I’m 70% better! That’s HUGE!!

      Oh! Another thing that is so relaxing that I touched on before is the candlelight bubble baths. Ones that DO NOT involve trying to “get stuff” out of our skin… keep it dark enough so you couldn’t see anything if you tried. When I really put this into practice I remembered how euphoric it felt to really be taking a TRUE bubble bath and enjoying it like I used to!! I realized that I had completely forgotten what I was missing it’d been so long since I had really taken a REAL bath!

      If you have kids, my advice (and PLEASE feel free to give me your all’s advice too-I ALWAYS need more!!!)… well, just remember how stressful “THIS” situation is on them too (whether they have it too-or just know you have it)… even if we try to not talk about it… kids know… they see it… they DO hear us even when we think they don’t sometimes(it’s inevitable-they’re like little spies… okay giant SPONGE spies who absorb everything without even trying!LOL)… and OF COURSE, this has got to be terrifying to them… SO, I try to do things to help them relax and ease their level of anxiety too.

      For example, my youngest (just turned 9-but has had this since she was 3)… well, she gets scared to shower or bathe alone… SO, I give her the (what I call) “mommy spa treatment”. I light the candles, use a little bubble bath (but not a lot because I know that we all/she seems to be more prone to urinary tract infections)… anyway, I make it beautiful in the bathroom for her… I use some of my salt/sugar scrubs on her back and feet for her to make it fun… I let her do a little “oatmeal mask” (just for fun… obviously not because she needs it)… I turn on music that makes her feel relaxed and happy, or I use our “rain maker” sound machine…. Then I let her lay in the tub relaxing and I sit in the chair in there and we play, “would you rather”. She LOVES it! I love it too. We have SO MUCH fun and giggle the whole time! Sometimes, my older kids will even come into the room (not the bathroom) but just close enough to where we can all here each other but she still has her privacy of course… and they’ll play too. “Would you rather” really gets their creative juices flowing and it can be an intriguing peek into their deepest thoughts and even fears, yet it’s done in a such a fun way that while playing… it’s just plain fun.

      I also used to give them the “Mommy spa” as well when they were young enough… It blows my mind that 6 years has gone by!! They were 6 & 8 when we first realized we all had this. WOW! Sometimes I wonder if that makes it better or worse for them? You know? I do know that my youngest stated once, “having this illness is like wearing a giant backpack full of the heaviest rocks on the world wherever you go, but the rocks are really just one big, heavy secret!”. From the mouth’s of babes-right? She was 6 when she said that & I remember it was around the time that we had realized that it was best not to let others know what we suffer with… sad… so sad… On a bright note, she is coping REALLY well! She is sick a lot (we all are, except my son who just mostly gets headaches)… My youngest has had 3 lesions on her arms in plain site that have been there for almost 2 yrs (1 of them)-the other 2 for a little less than a year. She also has 3 on her leg that she’s had for a LONG time (8 months give or take) and another on her other leg that has also been there for 2 yrs. Sometimes she starts crying and comes to me acting almost ashamed because I guess it will start itching and she’ll accidentally make it bleed when trying to itch it… & she’ll say, “Mommy, I’m sorry… I couldn’t help it… it itched and I accidentally made it bleed again… it’s never ever going away” (or something else like that). It breaks my heart that she feels so ashamed. Her friends all ask her why she always has a band-aid there and why it won’t go away, & if her band-aid comes off at school her teacher sends her to the nurse to get a new one. This is very embarrassing for her the poor baby.

      I think it would be great if there were a blog section dedicated to us moms exchanging ideas and tips on how to help our children cope. Tips, etc. I mean, it’s not like we can give them ivermectin. You know? It really scares me… So, I just try to make time for them… play with them, & basically anything to take their minds off of feeling “blah” or scared Maybe…. Mr. Common Sense? Maybe you could start a topic about that? Or, maybe there already is one but I haven’t gotten to it yet? I JUST started really diving in to all the wonderful info here and great people…. but, if there isn’t… I really think it’d be helpful.

      It almost seems like us Moms have to be afraid to talk about what our children are going through. Even though it’s not our fault it seems that we always have to fear people bashing us as Moms because many people already think we’re nuts. I know what I’ve been through when initially trying to gain the support of my own Mother. She wouldn’t even look and even tried to take my kids away. Of course, she couldn’t…. because I may be a lot of things… but, I know I’m not a bad mom . Not a perfect one either… but show me a perfect mom and I’ll show you a liar! Child services left saying, “I’m so sorry your own mother would do this to you-your children are obviously very loved and well cared for”.

      So, yeah… I think us moms (AND dads) could use the support and commodore that only others dealing with this could understand… I’m tired of having to feel guilty and ashamed about something I have no control over AND something that I know I could use support on. It’s terrifying knowing your kids have this and there’s nothing you can do about it… HAVING to make them go to school when they don’t feel well… etc. If you all think about it… people really do seem to avoid the “children topic” to a certain extent. At least, the TRUE details…. because, we’re all scared. I know I am. I suppose your own mom trying to take your kids will do that to you though, right? My oldest daughter homeschooled for one quarter because she was being made fun of and was SO tired she could barely stay up past 7 every night. She’s in school now and even got a 4.1 last quarter (she’s a freshman now)… she’s doing much better now that we moved and no one knows about her ailment (she too, is lesion free now-but she still has “stuff” that comes out of her skin & it’s worst on her feet… so, if I could just get my youngest cleared up). We’re getting there!!

      Alright, this post is getting too long so I’ll finish it up later. I’m really sorry if anyone finds the length of this to be very annoying. I get carried away typing sometimes. Plus, I just really appreciate all the helpful things I’ve read from others and want to share some of my own. I think it’s great that many of you seem to also be focusing on enhancing the quality of life even if we have to live with this. Really, I think it’s just as important as exchanges “cures” right now because of the mind and body connection… and the fact that we could possibly have no other choice but to live with this for who knows how long. Although, I know that it’s important and helpful to share hints and tips about relieving symptoms… like I said, I feel that it’s equally important to share with others how we are coping mentally and emotionally! That’s one of the big things that gets me through each day. Knowing that no matter what… I DO HAVE A CHOICE in how I choose to deal with my circumstances. I now focus on the things I CAN change. It has served me well, & in turn, my children…. my marriage… I’m so grateful to have my husband back after a TWO YEAR separation win which we barely even spoke (we literally communicated via text messaging for 2 yrs. & I had filed for divorce). Now, we are happier than we’ve ever been. Could it be my shift in perspective? I’d like to think so.

      I look forward to communicating with you all here on this blog. I feel like I’ve finally found a place where people truly want to help one another. It’s nice. Thanks for taking the time to read this… don’t worry, I’ll run out of things to say eventually!HAHAHA! & I also look forward to reading all your stories (I have read many already)-so, I look forward to commenting on your stories/comments and commenting back to many of you (like the comment about living in FL-hahaha! It has it’s ups and downs) Good stuff here on this site-LOVING IT!!!! Love & Prayers to all!!!!!!

  9. This comment has nothing to do with Morgellons ,(I have had it since 2004) and is entirely innapropriate but I can’t help it. You are so CUTE!

    • Now don’t go giving me a big ego, pride cometh before a fall … 😉

    • sistertocommonsense said:

      You are one handsome dude MRC, this is also coming from a very married person. You have managed to keep your looks intact, but your heart is quite wonderful also.
      Sister to Common Sense

  10. Hey Brandicarlene,
    Yes, there’s not a lot of discussion about kids and morgs. Thanks for the thoughts about supporting them emotionally. You are so right! In my craziness, protocols, juicing, bathing and laundering mania, they are what gets forgotten. I mean, they are the most important thing in my life, and I yell at them to try to get them to eat their meat and vegetables. And it’s because I care so much and don’t want them to be sick, but still. I need all the reminders I can get to mellow out and just love them. On the days that I very consciously make the decision to be positive, everything is better.
    We have not told my mother because we are afraid of exactly what you said your mother did.
    It gets difficult making excuses all the time, doesn’t it? When I cut my hair in the beginning and bought a bunch of non-cotton long sleeved clothes to wear in the hot summer, everyone kept commenting on my “new look”. And what could I say?
    And other people’s normal comlaints sound little. But who am I to judge? A while ago, a woman I know told me her kids had had lice over the weekend, and she thought it was gone, but it came back. She was exasperated to have to wash the sheets again! Of course I did not tell her how many times I have washed our sheets and clothes over the last few months, and so I acted sympathetic, but I wanted to scream. And then later on I thought, what if her family has more than lice? That’s why I kind of feel bad for people who have not yet been educated about this topic, because I am afraid their time is coming. My husband wondered the other day how many people we may have crossed paths with who are also leading this strange double life.

    Take Care!

  11. Don’t mean to hog all of the threads! Sorry!
    Susan, you are quite right. In our zeal to protect all we tend to get too focused on the here and now. Our children are the only ones who matter. We tend to forget that. The constant worry of trying to keep everyone safe from whatever this is allows us to forget the big picture.
    Lice are like poison for M people. I think that part of my infestation is from children who had undiagnosed lice for quite some time. But there are other factors as well, cats, dogs, agrobacterium. We just don’t know!

    I must say Brandicarlene that you are a welcome breath of fresh air as well as a great and positive kick in the pants.
    I, for one salute you, girl!

    God Bless.

  12. I love all the info from Brandi! thank you! I was a licensed skin care specialist here in Florida until I got Morgellons. I would professionally suggest an organic line like Eminence Organic Skin Care. It is fabulous and does wonders for the skin with no chemicals what so ever. You can even do your own skin peel with the pumpkin peel. I would also suggest (esp for us who are in hot climates) to use Jane Iredale Mineral makeup. She was one of the first to have a mineral line and it was designed for dermatologist to prescribe for women who have just had deep skin peels or who have birth marks. It is a wonderful line and the coverage is incrediable. No bare minerals is not even comparable. I have spoken to people who have had allergic reactions to it. Jane Iredale is the way to go. You will not even feel like you have make up on.

  13. Ohhh… my goodness….!!!!!

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