It's been a while since I've posted, so I thought I'd offer an update. I've been on the protocol for a few months now..I say a few months because I actually started it a year ago but was pretty hit or miss until around October of '16. I've still struggled with taking all of the supplements, and have had a couple of well documented slip ups (Christmas and in February around my birthday), but since that February slip up, I've been back in the saddle.
I'm doing better...with taking my supplements, and with decreased symptoms. It's interesting how resistant these pathogens are though. It seems like every step forward...which I measure in how much the skin expression of this has decreased...usually after I've exfoliated for hours on end...then there's almost always some kind of backlash. By backlash, I mean it's almost like a regrouping of the pathogens to change the texture of the area I was working on. I'll feel it increase in size, shape, and texture...almost before my eyes. I guess this is an example of how it changes our dna to stay "safe" from any of our efforts to get rid of it. However...since my slip up in February, I've been diligent in doing what I'm supposed to do, and the overall area is definitely better. It's so slow though...so I have to make myself remember how it was a couple of months ago...because I'm just not going to see the difference day to day. I have noticed though that if I can ride out the backlash storm and keep doing what I'm supposed to, then I'll notice an improvement in a few days.
I'm really encouraged because of this improvement and feeling very proud of myself for staying so focused on the protocol in spite of the fact that my job responsibilities are almost out of control for lack a better term. We've had an increase in work load by a huge percent and no new help. We're now working on some Saturdays and that's been pretty challenging with the fatigue. However...only one more Saturday to go...and that one's on the 22nd and then the Saturday work will be over for a while, thank goodness. Feeling like I can face almost anything after riding this work load storm. Sure puts things in perspective.
So...seeing some light at the end of the tunnel and feeling hopeful.
Would be so nice if research could be dedicated to figuring out how to stop the whole dna shifting these pathogens employ to stay in residence in our bodies. Seems like that would be a quantum leap forward.
In the meantime...staying slow and steady in the race, as You Know Who always tells us.
Thank you You Know Who...we all love you!
Thank you for your latest post and for being so honest about the sugar cravings you've experienced.
I think its so helpful for people to read how strong a battle we are in and how the organism, whatever it is, will fight to continue to live.
It was very surprising to me how strategic the cravings for sugar were and how they came at their strongest when I was at my weakest, physically and emotionally.
It may be helpful to use a technique called threshold thinking, where you capture your thoughts immediately and question them putting them up against your own standard of whether they are acceptable or not. We have to see that just because a thought enters our head, it is not necessarily from us, or a good thing to keep thinking and if not, it can be rejected and replaced with truth. I do believe that the organism can attack us in our thoughts and bodies giving us cravings for sugar.
It is helpful to me to have things to eat that I enjoy, like the almond fudge and fairy cakes. I also make crackers based on a recipe from Nan.
In the middle of a crisis with my elderly mum with none of my food available and tempted to go back to what I would normally do - eat chocolate bars to keep me going - it was really tough and I just survived on almonds. Now I try to be better prepared and have stocks in the freezer to take out with me at short notice.
If I'm eating with friends I'll take some of my own crackers and a protocol friendly biscuit or cake so that I don't feel deprived.
Also you could mentally rehearse a situation, like your birthday meal, in advance and imagine every step of it and see your friends eating the cake and you eating your own cake and enjoying watching them enjoy it but being satisfied with what you are eating. Rehearse how you are going to feel, what you are going to say at each moment.
That's what I do when I make birthday cakes for family members, cakes for friends or church, or desserts for special occasions like Christmas. I always make sure that if I can't eat anything at the time that I know that I have had something to make up for missing out on it either before or after.
Two years ago I ate chocolate most days, my lunch was usually coffee and cake if I was out and I generally cooked the food I liked to eat. I've had to learn that its ok to cook food and not eat it if its no good for me. I just make sure I have something different that I really like.
Thank you again for your honesty and I know that it will be so helpful for people to relate to.
Let us know how you get on.
God bless Ruth
I'm sorry it has taken me so long to respond to your very kind post. Welcome to the site! I'm sort of feeling a little bit like less of a newby getting to say this to someone else! It made me so happy to read that my convoluted remarks made you smile. Humor has always been a huge part of my life, and for a while, when things got so scary, and before I became involved in this community, I'd lost all sense of it. After a while, the absurdity of some of the things I'm experiencing that we all go through finally made me start laughing at some of these things that no one on earth would believe unless they'd experienced it themselves. Now I'm starting to laugh at myself again...it's actually the only thing I CAN do when things get bad...especially when they got bad due to my own actions.
Case in point...I did it AGAIN...cheated on my diet. I'd gone on a sugar bender at Christmas that lasted six days and thought for a while (because of the delayed reaction) that I'd maybe dodged the bullet. Uh...not...about two weeks later I had all the freakish skin reactions I thought I'd put behind me. During the looooooong hours I spent chained (again) to my dresser and make up mirror in painful exfoliation detail, I swore on everything sacred to me that I'd NEVER cheat again. This wasn't hard for me to do either...because I'm really very very disciplined about my diet...until I'm not...and one week ago, I went back into the land of "not." Suffice it to say it was due to a combination of weakness plus proximity and celebrating my birthday at a restaurant with friends. My sweet friends know I've been sick and can't have cake...but...they just couldn't see having a celebration without at least offering one. I knew they were going to do this and told them ahead of time that I was happy cake would be available for everyone else, but that I couldn't eat any. My plan was to just interact with the cake by blowing out the candles. Well...the cake was placed in front of me with the candles lit...and as I looked lovingly at it, I heard the words..."...if you go by HEB at 7:15 in the morning you can get cakes right out of the oven and they are just SO good...this one was picked up this morning." It was a tiramisu cake and just so scrumptious looking that I allowed the inner conversation to start in my head. That internal convo is the kiss of death for me...it goes something like...well...just one little piece...maybe I'm well enough to manage it...etc. So...I said...ok...just cut me one little piece. And that's when I went careening down the slippery slope of Sugar Mountain. It was good...I mean it was SO good...I was in heaven...and then the next words came..."I'm going to just have another piece." This time, I cut it...and it wasn't small. But it was SOOOOO incredibly good.
I believe we all have our addictions of one type or another. Mine is sugar...and because of this, I should stay completely away from it even if M or Lyme disease wasn't a factor in my life. In any case, I ended up doing what I did at Christmas...I just turned into the equivalent of an out of control addict and it was full on eat anything I felt like for several days. The mentality behind this makes no sense to anyone with a rational mind, but it's a mentality I clung to out of pure denial. After the first day...or actually after the first bite... I was so horrified that I did it that I couldn't even let myself think about it. I was so scared...knowing I'm going to pay for this and pay big if things turn out like they did at Christmas. I emailed Mel and told on myself and asked him if there was anything I could take to lessen the effects. He mentioned taking an extra Candida Rid and I did.
Interestingly, I haven't had any immediate symptoms at all from this binge fest...but...that was how it happened last time too...it's a delayed reaction. The more I thought about this, the more scared I became and I went into just give up mode and the binge kept going on "one more day" until it became a week. Mel called me on Wednesday or Thursday and I started telling him about this with all my excuses and he basically told me I needed to gut it up (my words) and get back on the program. Hard to hear...because I'm usually so incredibly disciplined about my eating and I don't like thinking of myself as weak.
However...weak is what I was, and now I'm back in the saddle again. That was harder to do than it sounds because it required me coming out of my sugar induced hiding my head in the sand to face what I now know I'll quite probably face...the fallout in a week or so. Good news is I'm back at 100% now in all areas and have recommitted myself to doing what I'm supposed to do and what I'd been doing for well over a year minus my Christmas and birthday holiday binges.
Nice to have a three day weekend...I've been cooking up a storm to have things ready to eat at any time. This is key for me to avoid making bad choices. I'm playing around with a pie recipe today, and if it turns out to be good, I'll send it to Mel to post.
I'm crossing my fingers the fallout from this recent binge fest won't be bad...but that may be just more evidence of wishful thinking on my part. Since my Christmas binge, I'd added Colostrum to my protocol and that has helped so so much with my energy levels and brain fog. I think it's helped build up my immunity too because since I've been taking it, my skin condition has improved dramatically after I got through the fallout that happened in January from my Christmas sugar binge.
I've read about the biofilm and "quorums" the four kinds of pathogens create to protect themselves from anything that might kill them...and I can feel this kind of biofilm on my skin. It feels like my skin texture is something synthetic...almost a nylon kind of feeling...and I can feel the little hard places under it. It's mostly in one area on my chin and I'm totally devoted to working on exfoliating it every day. I'm not sure if that's the best to do it every day...I've had this convo with Mel...but...after some experimentation, I've realized the every day system is actually helping, in my case, anyway. These pathogens are tricky...and they constantly reform and make new biofilm in an adjacent area once I'm able to get rid of a place by exfoliation. That has to be the most crazy making part of this...it's just full on war but I'm not giving up. I've continued this exfoliation routine even through my sugar binge days which is at least one positive thing I did during this time. I'm almost afraid to say this...but...my skin is just SO much better now. After weeks of exfoliation, I finally broke through an area and got down to the glitter and crystals. This is the most painful part coming through the skin, but it makes the most difference when I can get rid of it. Slowly, the "nylon / synthetic" feeling to my skin is starting to go away, and the hard places under my skin are becoming significantly fewer.
Lol...I shared all of this when I talked to Mel and told him I was shaking in my shoes because I now wonder if my skin is better because all of the pathogens realized that there were "treats" on the inside of me because of all the sugar I've consumed and that I'm worried that they're inside of me having some kind of a pathogen sugar orgy and increasing their population by a thousand fold. Mel said that's a definite possibility, and so I now face God knows what kind of a reaction in the upcoming weeks. I'm praying the Colostrum got my immune system working well enough to circumvent this inevitable fallout...but...again...probably wishful thinking.
There are really no excuses...but I have been dealing with way more than usual in terms of work load on my job and personally due to the terminal illness of an extended family member...which hasn't created any demand on my time but has been emotionally difficult. In life there's always "something" going on, and I need to learn to manage myself around sugar and not allow these things to derail me...so my next task on this journey is to create a contingency plan to manage myself during weak moments...and I think this will be best dealt with by having some "desserts" that are diet friendly always on hand.
Well KarenAnne...I ended up making this thank you for your post and welcome to the site post about me me me...but I decided to go ahead and do an update on my journey while I was at it. So good that you're reading everything and learning as much as you can. I can tell you this much from my journey so far...listen to Mel...and do all the things he and the other members who have found success say to do. It actually works...amazingly well. You have much to look forward to...getting your life back is a definite reality...and how soon any of us get there is almost completely up to us and the many decisions we make every day. How wonderful to feel so empowered. Mel has charted the map and we just need to follow it.
I look forward to when I can feel as well as I do at the moment every day (and I only feel great today because I'm the bomb that hasn't yet gone off due to my sugar binge)...but...feeling this great is so exciting...and helps me to remember what I used to always feel like. Can't wait for the day to come when this bad boy M is history. It'll happen for me because I'll get my weaknesses in hand, and it'll happen for you because you have found the right place.
Please forgive my rambling...but I wanted to make sure to create a thorough update because I've been incognito for a while.
I am new to the forum. Yesterday I had my 1st call with Mel...reality set in...you couldn't even look at me ..the tears just poured and poured. I think somehow a release of some sort.
By the end of the day I had posted in Kelly and Ellen's journey..
I thought by writing I would find some peace by introducing myself..
I felt like writing the words made it legit and I HAD to own it..this dirty secret I have been carrying..that no one understood..those I love wanted so much to understand saw my hurt saw my anguish but didn't get. But I'm letting everything go today!
Slowly I am making my way through the Journeys and tonight was yours.........I think for the very 1st time since September of this year..I laughed...your writings..stories...wit had me smiling and laughing...your truthfulness is refreshing..the open honesty...thank you so much. Truly thank you.
Mel called me this am to check on me as I was walking into work...it felt so good to hear his voice and to know that someone was wondering how the heck i was doing after finally wrapping my foggy forgetful brain around this nightmare. I appreciate your story so so much...every journey I have read I am truly amazed and feel so blessed to be part of this community of such wonderful people that I never would have encountered if not for this part of my life. The Slinky story...the best..needed it so much today...
I thank you for it.
FYI..Im off the ground and a few coils higher I believe today.. not by much but hey when you reach rock bottom there's only up right?!!
You give me hope and I'm clinging to that these day with all my life,
Take care, we got this!
KarenAnne from Mass
Thanks Kelly :)
Funny how happy emotions can become stumbling blocks too, huh? I really hadn't considered how feeling better could affect everything until I experienced it last week. However...I'm back on track now and working through the fallout. This week it's the glass-like (ouch!) particles working out of my skin, but thankfully, the fibers / tickles are gone (for now, anyway). I haven't yet tracked these different skin manifestations to see a pattern, but I think I've read some posts of others who have figured out the cycle. I think I maybe read something like this on one of Peter's posts? Does anyone reading this remember reading about or know the cycle? If I'm remembering correctly, I think someone also said when you get to the glitter, you're toward the end of the cycle. It seems that the glitter emerges after the crystal / glass particles for me. Is this happening in this way for anyone else? I'd be really curious to know the order in which (along with timeline) others are experiencing these things emerge from the skin.
You mentioned exfoliating twice a week...I wonder often is best...I do this daily...every evening for at least two hours, often more. It's probably the thing that drives me the craziest so I'm wondering if it may be better to do this less often. It's very frustrating because it seems like a never ending task and it seems like the more progress I make in terms of removing the particles, the more my skin hurts and (at times) the more particles appear the next day. Thank goodness for audible books, or I'd go over the edge with this seemingly endless exercise. I need something to distract myself while doing this...otherwise, it's too easy to start thinking too much about the why and what happened and what will happen, etc. and let fear form like a huge thunder cloud all around me. I will say, however, that all this exfoliation has delivered positive results if I look at it over a period of weeks. If I factor out my recent falling off the protocol detour, I was definitely seeing less and less in terms of emerging particles...it's just such a long process...and so gradual that it's hard to stay positive sometimes. That's why I'm thinking about tracking the details of this and wondering what others are seeing re/ types of particles and related timelines.
Thanks again for your feedback Kelly. I hope you're getting close to the end of your journey and can put all of this in your rear view mirror soon. My goal is to go into 2018 with this life episode marked as history.
Thanks for posting your story.
I made the mistake in the past of cheating one night because I was feeling so much better, and I JUST WANTED TO!
I suffered like heck the next day and decided it just wasn't worth it. It happens to everyone I think.
I have to tell you that the tickling on the face/chin is one of my major annoyances as well. Little by little, the duration of the tickling lessons. I find that exfoliating twice a week, as well as Kleen Green does the trick.
I,like you, am waiting for the day when there are no more tickles!!
In composing this post, I find myself wishing I'd waited until after the holidays to start these weekly(ish) updates. I figured a public declaration to hit all the marks on the protocol and report in on the forum would keep me accountable, but...in retrospect, starting this forum journey a couple of weeks before Christmas might not have been the best time to begin.
However, I've committed myself to report on my journey, and in doing so, one must take the bad with the good and report accordingly, so here goes:
* Actually...this part is past good...it's the BEST thing that's happened to me since I got sick over a year ago. About three weeks ago, I ordered the Logos Colostrum and started taking it as per the instructions on the bottle. As mentioned in my earlier posts, two things I battle with the most have been fatigue and brain fog. Well...after about three days of taking the Colostrum, I suddenly realized I wasn't tired any more...I mean...I felt downright NORMAL...and the brain fog lifted...vanished...disappeared!
I get lab work from my doctor every two or three months, and from this, I've learned that my immunity level as measured by a test called CD57 is seriously low. My doctor said it's supposed to be at least 120, and I'd been hovering around the 23 - 36 mark for the last year or so. The last lab work I had was on November 8th, and my CD57 number went all the way down to a SEVEN. I was pretty scared about that, but my doctor said working on getting rid of the pathogens puts a pretty big strain on your immune system and once you can get the pathogens / toxins down to a certain level, your immune system will have a chance to build back up again, and things will continue to get better and better. Because of this, I wanted to do something to really kick start my immune system, so I decided to look at what Logos had to offer in that area...and that's when I found the Colostrum.
I did what Mel said not to do which I thought I'd never do. I started feeling so good again...so normal...that the sensation just went straight to my head, and I crossed the line...big time. I felt like a blind person who'd been given sight...I felt like my old self again...energetic, hopeful, and...well...NORMAL. I was past joyful...it was like finding myself again...finding a part of me I thought was buried, dead, and gone.
Like everyone else, I've been slogging my way through the negative emotional fallout for so long that I'd almost become accustomed to it. However...I had no idea how much of an emotional punch this turn for the better would deliver...I'd forgotten what it felt like to feel good! Add to this the proximity and availability of Christmas goodies and treats plus the lifted mood from having family and friends around, and I suddenly found myself in what I can only describe as a complete departure from my senses and in major party mode.
And the party lasted for six days.
As mentioned in my earlier posts, other than just not eating, I'm typically very good with diet. I have strong and consistent self control when it comes to not eating anything I'm not supposed to. My challenge had been in eating enough and in getting in all the supplements every day...but I've had the diet under control.
Of course I knew I was playing with fire...but a part of me just went into denial...and...as we all know, the symptoms don't always come immediately...so there was a pretty fun party window there for a few days...and then...it was time to pay the piper.
I'm paying now...but thankfully, it's not horrible...yet. Do I wish I hadn't gone crazy and prolonged my journey back to wellness by days or weeks? Of course...I don't want anything to make this go on a minute longer than it has to...but...and this is a very cautious but...for some reason my symptoms aren't as bad as what I'd have had in the past for even a bite or two of something I'm not supposed to eat. As of today, I got super organized and have eaten perfectly and have stayed true to the protocol without exception. My goal is to continue to do so with consistency...daily...weekly...monthly...and all the way through 2017.
I'm not taking this (maybe) dodged bullet as license to wander off the diet and protocol again...I'm just thanking God for a possible reprieve and moving back onto what I know works. However...the jury's still out on what the fall out will be from my little fun fest...but I'm crossing my fingers and hoping for the best.
Will report in in about a week or so...am hoping to start moving forward again with an eye toward the finish line before 2018.
Dear Deanna and Ruth,
Thank you for your kind responses...you both are obviously good at persevering since you made it through reading my previous novel length posts. Hey...if you two have the grit to do that, then you definitely have what it takes to kick M. out of your life!
Lol...yes...Deanna...this disease does change one's way of thinking, and sometimes it can get downright interesting (code for slightly disturbing) how drastically one's thinking / behavior can change after dealing with this for a while...especially on those endless days when you finally get to the point of having HAD IT with all the "fun" aspects this Old Testament-esque adventure offers.
Case in point...I cracked a couple of weeks ago after having spent hours on end every evening after work for days dealing with the purging aspect which we all find so delightful. I was feeling "chained" to my dresser in front of my lighted make up mirror rubbing various solutions into my face when suddenly I hit a wall. I'd just HAD IT...I was so sick and tired of it...of my skin hurting and of the never seeming to finish aspect of it even after hours and hours of meticulous treatment.
Every one of us knows this feeling...and I was there...at the end of my rope...and hanging by a thread.
But...what to do? Stop? Nope...can't do that...but human nature will eventually express pent up frustration, and that...I did.
I started talking to the pathogens.
I was into it too...and this one way convo was thorough...my commentary ranged from remarks about their character to whining and begging them to just PLEASE go away and leave me alone forever...and EVER! I even started guilt inflicting them for their parasitic natures and then twisted the screws by pointing out that they were just bottom feeders because of not having a life of their own and having to freeload off someone else's body.
About that time I had a stinging sensation so sharp that several impulsive expletives spewed forth without censure...but...when I realized I'd said "bite me" in my little cuss fest, I slapped my hand over my mouth and said...NO...NO...NO...I didn't mean it!! Pretend you never heard it!!!
At that point, it occurred to me that I may need to consider psychiatric intervention...OR...I could just stop and high five myself for letting those little pathogens know who's boss!
HA! Guess I told them!
Hope you both have a wonderful holiday. I'm planning on celebrating by being thankful for the blessings I still have and all of the new ones that have surfaced as a result of this dis-ease. I've been thinking about the upside quite a bit lately...and the more I consider it, the more interesting the connections become. But...that will be for another encyclopedia length post. Right now I'm about to run to the kitchen and make the chocolate pudding from the new recipe section.
And that is something to REALLY be thankful for!
Hello again Karen,
You are VERY welcome! Thank you for the nice response!!
I "loved" your Elvis on Velvet comment!! YES living with a toxic disease can definitely change ones way of thinking, fortunately for all of us in this community it seems to change it for the better... so I believe you and your home are safe from added artwork for now!!! :)
My thread is "Is this an answer to prayer", however, you can find several of my comments throughout most of the recent threads. I jumped in fairly quickly, after finding this community and starting the protocol, to both the conference calls and communicating with others but my private side kept me from starting my own thread until recently. I am touched, moved and inspired that you have opened up so quickly. You will be making a difference in the lives of many, so thank you!!!
I am elated for you that you have a couple of weeks off and a couple of weeks to get on a good schedule!!! As a fellow single person who also takes my work very seriously, I can promise you "if" you make your health (which means following the protocol, including eating 3 protocol healthy meals a day, 100%) your #1 priority, so many of the things you are currently suffering from will subside and you, your co-workers and your work in general will truly benefit from your commitment!!!!
Again, welcome, God Bless and thank you for sharing your story!!!!
Love, Peace & Prayers,
Thank you for posting a bit more of how you came to the website and your progress so far. Thank you for being so honest about your struggles to fit everything into the day. Its quite a regime isn't it! Its helpful though I think for others to read about your difficulties and the way you are tackling it to get to 100% compliance with the protocol.
Its so encouraging for me to read other peoples' posts and I always look forward to hearing how they are getting on so please carry on posting. You will be a great blessing to others x
I woke up this morning thinking how grateful I am to have access to the warm and loving community this forum offers and also for Mel and all the information available on this site. As mentioned in an earlier post, I've been reading and listening for several months now, and have noticed that, to me, some of the most encouraging posts come from those who document their journeys along the way.
The more involved I get in reading and listening, the more impressed I am by the dedication and selflessness of Mel and the sheer courage, faith, and strength of all of you who, despite your own level of struggle, still manage to reach out and offer hope and support to so many others.
So...in the spirit of those of you who have gone before me, I'd like to I'd like to start today with documenting my own journey. I believe this should start with my backstory. I've touched on it in my previous posts...and as mentioned, it's pretty similar to most others, but I'm going to go ahead and document it here anyway...just to establish a starting point.
In May of 2014 I was bitten by something when cleaning out my attic...I think it had to do with a bird's nest on the porch ceiling close to a vent to my attic...then several months of weird itching / crawling that doctors couldn't figure out, but (based on what I now know) those were not M symptoms. Got rid of it by online searching, which led me to the conclusion of colembolla which led me to a strict diet and cleaning, etc. Once abated, I fell back to my old ways of eating and thought that was that and all was good.
In the summer of '15, I opened a Space Bag with a cushion in it and immediately felt the crawling / biting again. It got worse this time...so I amped up my offense and went back on my diet and into crazy cleaning mode plus deciding to go for a scorched earth approach and annihilate for good what I believed was original source of what had bitten me. This involved doing the army man crawl through my attic spraying a three round set of pure ammonia, then a mix of three highly toxic insecticides, and then pure ammonia again to finish it off. I did this three times over a period of six weeks.
After the last spraying, I started getting very sick. This was in October of '15. The online research I'd done before to figure out what the first "biting" thing was had educated me enough to recognize these symptoms as Morgellons. I was terrified and started going into online information seeking overload. Suffice it to say, I wandered around in the cyber wilderness being pulled one way and then another until I finally decided last April or May to just go ahead and do this protocol.
I wish I could say I stuck with it as written...but...I didn't. The siren call of a possible "quick cure" lulled me back into cyber space. I'd still go to other sites and read and read and read. I've ordered so many things (including a pricey computer driven Rife machine that would be challenging to operate even with my cognition working at full throttle...and now hoping I can sell it on ebay), and just about every other hope in a bottle, tube or jar that struck me as a fast cure. I'm now convinced this has prolonged my path to recovery, but...regret serves no purpose, so I will leave that as lesson learned.
I started trying to get purely on this protocol toward the end of September, but have struggled mightily with "compliance" over these last three months for reasons mentioned in earlier posts. However, on the stretches of days I do manage to do everything like I'm supposed to, I always notice significant improvement in all areas. My biggest challenge is in taking all the supplements. I have no problem staying on the diet with the exception of not eating enough. I find myself just not very hungry sometimes, and I get so busy at work with my random schedule so that I often miss meals and the supplements that go along with them.
Last week I finally decided to just throw in the towel and admit I needed support, so I booked a conference call with Mel and have also email bombed him with a ton of questions, musings, and anxious disclosures about concerns both legitimate and trivial...and repetitive. He's been supportive and kind in his responses, but in retrospect, I've realized some of my questions could have been answered by further reading / listening to the information offered on this site and the Logos site as well. Lol...yes Mel...that IS what you tell us over and again, but some of us take a little longer to get it than others.
So...here's where I am today. I'm better than where I was at this time last year. This is due to a number of factors including having a supportive doctor who has prescribed various antibiotics, etc., since my first appointment last January. I know I'm better because of the lab work I have done every two months. And...even though I haven't been on this protocol 100%, I suspect much of my improvement is still a result of those things I've done (albeit intermittently) as recommended by this site including the supplements on the protocol and adherence to the diet. I'm probably painting a worse picture of my compliance to the protocol than is actually accurate...but the more I read, the more I realize it has to be 100% to make it work...and I haven't been at 100%...YET.
But...as of today, I have one full day of doing everything I'm supposed to under my belt...hey...it's a start, but my goal is 100% compliance from now on. My symptoms at this point are mostly fatigue at certain times of the day, brain fog (not all the time, but enough to drive me nuts), and some skin issues on my face. Like everyone else, I've exfoliated any number of disturbing things from my skin and over this last year have noticed how these things seem to come in waves, change, and morph around for lack of a better term. The thing that drives me the most crazy is a little place on my chin / jaw bone that has little hard places under it that seem to react and move around when I treat the area with various topical solutions. Various things come out on the rest of my face with this treatment including black specks, white grains, small black fibers about the size and shape of an eye lash, and long white hairs that suddenly surface after rubbing for a few minutes...and of course...the glitter. Mine is pink. The place on my chin has produced the same plus what I now believe is biofilm which looks like sharp little crystal and plastic pieces that really hurt when they come out (though, of course, I'm so glad they're out rather than in). The latest thing that this face adventure has morphed into is what I call tickling as a result of very very fine fibers coming out of that area on my chin in the evening and at night. I've treated this with coconut oil, essential oils, aloe vera juice, papaya powder, MMS, Kleen Green, etc., etc., etc. but they still keep coming. These fibers are so fine that I can barely see them even with my 3.0 reader glasses and an 8X magnified make up mirror. Once they start, I go into make them go away mode with topical solutions, tweezers and occasional screaming because...well...it HURTS when I pull them out...especially when one is close to a hard bump under the skin. These bumps and fibers have a stinging quality to them that's hard to describe. The only thing I can think of to compare it to is like the sensation one has when eating the candy called Hot Rocks, but it's as if I have Hot Rocks crushed into small particles under my skin that intertwine with these fibers and nerve endings and hurt like crazy when removed. Of course, every time I remove them in an area, more pop back up, but if I'm diligent, I can at least make a dent in the volume. I've found a product called Waxolene that's supposed to be a natural based product alternative to Vasoline. After I work on my face , I wash it in peppermint soap (ouch!) and then put on a thick layer of Waxoline. This helps some...unless it's a particularly bad night. The tickling keeps me from sleeping which, of course, is not good. I'm going to try taking Zyrtec tonight to see if that helps any. I hope so.
On a more positive note, the purging has become less in volume over the months, though it's still definitely there...but the current pathogen trick of this tickling is just SO annoying. I've noticed the little bumps under the skin on my chin have lessened...but...sigh...it's a very slow process...they only lessen by the smallest increments over a long stretch of time.
Ok...that's the state of the union for me at this point on my journey. My plan is to update my progress intermittently in the attempts to reach out for support, track my progress, and hopefully, have some level of positive input for others.
I often wonder how many thousands out there are like me...who have been doing this alone...reading this site quietly without joining in...and reaping benefit from all the information. My guess is that there are a LOT of people in that boat. So with this thought in mind, thanks again to all of you who take the time to put yourselves out there and post your journeys, questions, and info for the rest of us who lurk and hope. I've now officially crossed over from lurker to joiner, and am, again, very grateful to be welcomed into this loving community.
Many thanks for your kind words of welcome, encouragement, and practical tips. I'll check the forum to find some of your threads so I can get to "know" you better. I've read so much...and I take notes...and I organize things...and re-organize them, and I've made some progress, but overall, my cognition is operating differently (as in a fog at times) than what I'm used to, which mainly seems to manifest in my executive functioning abilities. Managing details and information takes me longer and I seem to travel down a more convoluted neurological path to arrive at a conclusion or formulate my thoughts. If you've ever heard of the word, "circumlocution," you'll recognize it in my meandering style of communication.
I mentioned my concern about this brain fog to my doctor last spring, so she ordered a cognitive test to find out. As she read the report on my subsequent office visit in preparation to deliver the results, I got nervous and asked her if it was bad...and to please...just go ahead and tell me. She said, no...actually, yours is the highest IQ I've seen for somebody with your level of infection. Lol...I shared this with Mel on an email and told him that I was about to get the big head until I heard that zinger on the end. So...relatively speaking...I could be in the superior "for my level of infection" range and still barely be able to find my way to the front door.
But...as you mentioned...Outlook is a great tool, and I've recently started using notifications on my phone. I've used all kinds of pill organizing strategies, and it's interesting you mentioned the zip locks...because that's been my latest method de'jour...and the one that's seemed to have worked best so far.
I think the main reason I don't get in all my meds has to do with eating. I often find myself not very hungry...and I get so busy at work that I'll look up and hours have gone by...so no "lunch" pills have been taken...and then I look up again and the day is almost gone. I left a building just last week at 4:30 and realized my next set of pills to take was labeled, "mid-morning." I obviously need a new plan to address this, and fortunately, as of this afternoon, I have two weeks off for Winter Break which will give me some time to reorganize.
I plan to try to cook ahead and freeze some things over the time off. Hopefully having something to heat up for lunch will make things easier during a busy work day.
I'm also considering adopting a new approach after reading (listening to) Craig's information about PH. I believe he said that lunch is his larger meal and that he eliminates protein after 3:00 pm and usually has a salad for dinner. If I make a large salad ahead, that would make things easier as well.
Again...thank you for your welcome and response. I'm open to any ideas to help me in any of my "still developing" skill areas, and I'll definitely offer any tips I've discovered along the way that might help someone else as well.
On that note, I've recently discovered something that's helped me sleep better at night...and that is satin sheets. I just bought the cheap ones online and they're fine...all polyester which will likely get hot in the summer, but it's working out great right now. No fiber-y feeling with the slick satin surface means less skin annoyances at night.
I had to laugh when these shiny slick poly sheets came in the mail...thinking about my beautiful long fiber high thread count Egyptian cotton sheets that are put away for now...hopefully to be used again someday. I had a momentary thought of...what's next...Elvis on velvet? Ok...M can do a lot of things to derail one's life...but when it starts creating those kinds of thoughts...well...it's time to go to bed. Oh...fyi...the only real downside to the satin sheets is that you can slip off the bed if you're not careful. I solve this by just jumping straight to the middle and staying away from the edges.
Thanks again for your encouragement,
Welcome!! I am so glad you decided to join this community, openly, I am a "FIRM" believer that it is a HUGE part of our healing process!! Considering one must heal physically, mentally and spiritually to reach full remission this site covers it all..!!! Not to mention the fact that I consider some of the relationships I've developed within this community to be a few of the best I've ever known!!!
I can relate to so much of your story, being single, working hard, considering Lyme a blessing when it comes to family and so much more!!!
I'm not sure how you managed through 13 months of this on your own but I am glad you did and I am glad you are here to share your experience, strength and hope with others, including me!!!
I also empathize with your need to travel for work that "definitely" puts additional stress in the mix. I don't travel for work on a regular basis but just working full time can be difficult. I found it easiest to have the supplements that I will need while I am at work, at work at all times. Bringing them in each day became very draining very fast. I also have a printout of the Protocol taped inside my supplement cabinet at home, in my supplement drawer at work and I carry one in my purse (covering all bases as my mind can still get foggy from the fatigue).
Perhaps you could prepare a travel bag that will have a full set of supplements in it so that they are accessible to you at "all times". Initially I put the supplements I'd be using while at work in baggies with the name taped to the outside but once I got my second month's shipment I now have a bottle of everything I'll need at work, including silver and MMS and it stays there "always". As my work supply runs low I take the bottle home and fill it. Then the only thing you'll have to remember is to take them... outlook reminders are WONDERFUL for that!!!
I hope this might be of some help and I hope to hear more from you and possibly meet you on an upcoming conference call.
Take care and God Bless!!!
I'm new here...well...I'm not new to the site...I've been reading this site for almost a year now incognito, and have been on the protocol for about three months. I'm not new to the disease either...I figured out I had it about 13 months ago. Since then I've wandered in the wilderness of various "cures," routines, protocols and professional medical help. My biggest challenge so far has been exhaustion and listlessness. Of course...I have all the other things I've read most people have as well...the purging...itching...crawling...pain...etc., and all of this has gotten better to one degree or another, but at the end of the day, in my opinion, the most important piece to this puzzle is me staying focused...and I find the fatigue often interferes with my ability to do so. I've played around with the various applications listed above, and now know what to do. Mel's protocol works better than anything else I've tried...and it has surprisingly quick results. I don't mean a quick cure...I'm aware I'm in this for a long journey, but I did realize very noticeable results once I finally made myself do everything on the protocol day in and day out.
I'm one of the lucky ones who has a doctor who understands Morgellons enough to prescribe antibiotics, etc., and to offer some information as well, but as I was sharing with Mel today, she doesn't have the wide knowledge base about nutrition, supplements, rest, stress reduction, etc. that are available on this site that I believe are necessary to eradicate this disease systemically.
So...with this in mind, I decided to finally go ahead and jump in and join the community. We all need support and my situation is not that different than many others on this site...I'm single...live alone...and my family's support is negligible at best. It's not that they're not good people...it's that they've been influenced by the CDC report. I know this is going to sound odd, but I can say in this case that I'm lucky to also have Lyme disease. At least that's been a term most people understand or have heard of. I work with very nice people as well...and we all work very hard...all have our plate's full, so my interaction with people at work is to do everything I can to keep my end of the load going. That pretty much takes a bite out of my energy every day, but working is what keeps food on the table and supplements in the giant basket of same that I keep not too far from reach at all times.
I try not to talk too much about my illness at work, but my appearance has changed so drastically over the last six to ten months that people who see me intermittently are shocked...I can see it on their faces. For one thing, I've become extremely thin...and I look very tired, gray...and...haggard...for lack of a better term. That's the bad news. The good news is I know I've made gains toward getting well because of the lab work I have done every other month when I have my doctor's appointments. I still have a long way to go, and I'm now convinced that the only real road that leads all the way to the finish line is this protocol.
However...getting to the finish line requires being consistent and persistent. My job requires me to travel to various locations each day, and my schedule is different each day as well. This means I have to really plan ahead and prepare before each day. My problem has, again, been fatigue, and some days I don't get everything planned enough which usually ends up meaning I don't get in all the meds. So...I figured I'd join this forum and request encouragement. I've been doing this alone for so long, and I think it would be nice to be able to share with others who are going through the same thing.
And...with that thought, I'd like to add that I just had a one on one coaching session with Mel this morning, and that made a significant difference. I had some very particular questions about things I haven't yet seen on the site, and his answers were thorough, practical, and helpful. During the course of the conversation, I also found out at least two things I've been doing wrong that, when corrected, should allow me to see a greater degree of success. However...the biggest thing was the feeling of relief in his reassurance that this can be done. He's very straightforward...no nonsense...but very entertaining and funny. His positive energy was the sunshine I needed on my rainy day attitude, and I'm very grateful for his assistance. I look forward to future coaching sessions, and am also looking forward to interacting with and learning from this online community.