My Next Step

Long past now for me is the horror of Morgellons Disease . I never thought such a terrible experience would ever fade from my memory and yet, it has and continues to do so. I honestly don’t know how I made it. While you would think that I would be elated there is a since of failure hanging over me. I did not find a way out for everyone, and that was my inner most hope when starting this blog. Lately, I strike up my pen to write to you only to realize I have nothing to say. It’s like my ship sank at sea, and miraculously I was saved only to be washed up upon the jagged rocks of never ending despair. Don’t get me wrong, my life is good and I’m sure anyone with ongoing symptoms with trade places with me in a second and feel the most incredible sense of relief. I am certainly not looking for pity. Any sadness that I feel is for those suffering.

I think what I need to do is go back through my posts, starting from the very first post and pull out all of those very important clues, coping tips, and observations and create a definitive survival guide for those who are just realizing they have these dreaded disease. Call it a monster blog post if you will, covering things such as the amazing “Putida” coincidence, the skin crawling family tree, basically all of it. Perhaps having it all in once cohesive post will lead someone to solve the next step in the puzzle.

Meanwhile, I’ll leave you with the most beautiful song ever written, just click the play button, and give it a moment, it should start for you.

Lasso the Moon by Steve Amerson

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Comments on: "My Next Step" (23)

  1. Great idea Mr C. A Summary would be good, as there is a lot of info on this site; some more valuable than others. I could not play the song as it is only available in the USA. Do not despair you have helped many. Just having a sane place to talk to folks helps a lot. I have also met some dear friends through this site.

  2. Joe Keleher said:

    A survival guide is an excellent idea! Sharon is right; there are a lot of good people connecting through your blog. Thanks for setting the tone of “common sense”. Let me know if I can help. Your brother and friend, Joe

  3. I totally ‘get’ where you are coming from. I think this disease is so traumatizing, that it can leave you with a type of Post Traumatic Stress Syndrome in which one feels a loss of ‘self’ and who we were once were as opposed to now–our world has been shaken and turned upside down and we have been chewed up and spit out, left to pick up the pieces–if in fact we make it that far. You have made it that far and for this, I would look myself in the mirror and congratulate your body and soul for making it through such a battle!

    I am not in remission but when I do get there, I know it will take time readjusting and trying to live and regain the years lost in time and space [now going on 5 years–yikes ]. In other words, I would think the psyche needs healing too in the aftermath of this nightmare.

    I know everyone would welcome you revisiting the steps and sharing these insights in a compiled timeline; but I think if you sit down to accomplish this goal and it doesn’t happen, then your body is telling you to take more time…we will be here, not to worry.

    Rest and sleep easy knowing you have helped many…

    Love
    Pdidit

  4. like mr cs. i am better now.. i am also so confused..what in the world was that? is it really gone and if so how? why me? while i know i worked hard for health..real hard, i still have this sense of guilt. i am almost ashamed of my health, afraid to admit that i am better. i feel guilt when i eat good food. i consider those without when i take my these not so cheap supplements. i talk to myself, remembering how i often had nothing to fight this with and i will admit much to my shame not even a home. it was a struggle to feed myself and my dog. i say to myself “surely you suffered enough tina, it is ok to have a warm home and food and health now”.
    i try and tell myself that i deserve this. right? i suffered. i tried not to complain, even when my family and friends basically turned their backs on me. so why the guilt?
    in those nights when i was so sick and with no idea what was wrong with me i often fell asleep crying..i often could not even focus enough to pray. i was homeless, friendless and physically suffering. this was before i had even heard of morgellons.
    i wondered to myself about the others…this must be happening to someone else. i wonder where they are? are they hurting this bad? oh my god..there must be others. i knew that only someone that had lived in this nightmare condition would truly understand . i swore to myself that when i figured out what this was and got myself better i would find someone..the others…that fell threw the cracks and got left behind. because that is how i felt, left behind and left for dead…
    so here i am, crying as i type this email because …what will i say when i find you? i do not know how i really got better. i am shocked actually.
    sure i have a few ideas. i know i had a strong belief in both god and myself. so maybe this is what i have to offer back. belief, belief in yourself, no matter how dire times seem to be. now i say this to you honestly i was sick as i could be. my face was swollen beyond recognition at times. i lost a lot..even teeth and toe nails. i only tell you this to assure you i understand the very extreme nature of the morgellons condition…
    if you will please allow me to offer you hope and a belief in yourself. BELIEVE IN YOURSELF no matter what those people say. no matter what anyone says. screw those doctors. anyone that has turned their backs on you…YOU are more important and what you think and what you believe is what matters….you are not locked out, they are locked in.
    now as for your health. you will have to fight for it. this seems like an impossible task i know, more is being asked of you then ever before and at a time you have so very little to give. this is when you take a good look at yourself and tell yourself “today is the day i am going to reach in and pull myself out”.
    then tomorrow you may stumble say “ok i am just getting started”…and it is ok to cry your heart out. you should be crying. you are in a very sad situation! would you not feel sorry for someone else in your same situation? (i might be talking to myself right there).
    be easy on yourself. be kind to yourself.
    treat YOURSELF as you treat others, think about that. that was not a typo. treat yourself as you expect others to treat you. be an example and others will fall in line and if they do not, well, feel grateful that you know better.
    so, i am trying to help myself here as you may have realised. by reading this you have helped me in my next stage of recovery. thank you for that!

  5. Mr. C/S it is comforting to me to know that you have gotten out of this horror story because it gives us all hope that you and others have overcome it and so can we. What is most important is that you and others have done it without so called the medical profession giving you the formula and having to create your own. We do know that we are individuals and our bodies repond differently to things so that is why it makes it so difficult to say what works for one works for another. However, with you sharing your ideas and theology it gave us a beginning to start looking into things. In other words, we were not lost and desperate where we would try anything coming down the pipe line as a last resort. For that Mr. C/S you can feel you have served us all and we pray that you will continue to progress and live life as it was meant to be. Enjoy, knowing that we are right behind you and will someday be there too. God bless you and everyone who is dealing with this. Lyn

  6. I have dealt with Morgellons for 3 yrs. I still have some symptoms but I am so much better. The Creator has sent me many modalities that have helped. Mel’s protocol helped but I just couldn’t take all of those capsules. I have found that most folk with Morgellons also have digestive issues and I believe that capsules and pills don’t get into the cells. The whole idea of taking high-powered vitamins/supplements has helped me however, I take them in a liquid or powder form. I appreciate your blog. I appreciate Pamela Crane and Mel.
    Max GXL gluthathione has helped me more than anything. I have no more lesions and I have very few fibers now, no more itching or biting. I want to say to everyone, “Pray, ask God for guidance and I believe God will guide you to relief if not a 100% cure. I am believing God that I will have a 100% recovery though.
    I had actually considered killing myself because Morg. was so horrible.
    I am glad I didn’t. I really believe it can be managed with diet and suppliements.
    SUGAR…for me was the worst of all…I take in Stevia only now….

  7. herehoping said:

    Thank you Mr C. Thanks for all you do.

  8. Mel Friedman said:

    Hello Mr. C,

    This is first post I have ever made outside of my own website. When I look back to 2009 when we first started to communicate with each other, I remember the respect I had for you. Wow, I thought, another person besides myself got well!

    I knew that meant there was more than one way to get well, and to me that was a great relief. I have always said everyone’s body is different and for that very reason, you should feel no remorse over not being able to help everyone.

    No one can!

    I have read all the responses here; thank you Sagen for putting me in such company. All of my friends think I am an anal nut job, much like Felix Unger from the TV series The Odd Couple from the seventies. That made my protocol not as difficult for me to follow as it may be for others who are not as regimented as I am.

    Having had a very good relationship with my doctor (who knew I was not nuts) was very helpful, as she monitored all the therapies that I used – both the supportive (Burgstiner Wellness Protocol) and the potentially dangerous (MMS, Bactrim). She did this to insure I did no harm to myself. I was tested every three months to insure the protocol was not having a negative effect on my vital organs.

    I am symptom free since December 2009 and remain in excellent health, as I now near my hip replacement operation. I remember December 2007, when on some mornings as I awoke and headed for the kitchen, I would start crying before I got there. I never understood why, but these days I smile as I head for the kitchen, for I am about to have a bagel and cream cheese. I remember when I was afraid to eat such things. I relish in the joy of now, but never have I forgotten…

    Mr. C, feel joy as you experience the gratitude of all of those you have calmed down and made not to feel alone. You have given Hope to so many and have led them back onto the path of wellness!
    Feel the joy of your own love of your fellow man.
    Know that your efforts to serve have not gone unnoticed in the eyes of God.
    You have done a wonderful thing for all mankind.
    You have been and always shall be my friend.
    Continuous success Mr. C – you are a great man!

    God Bless, Never give up Hope!
    MEL

    ——————————————————————————–

    • I see your post here Mel man.
      First time away from home- congratulations!
      Welcome to the world bigger than life guy.
      You also are brave and notorious.
      When scouring the internet and finding all the crazed things out there,yours was the first protocol I found that made any sense and was grounded in
      good sound science(with no weird stuff),as well as backed by Doctors(who were not smoke and mirrors).
      It has been proven most recently as hitting some of the main areas that Morgellons sufferers need to deal with.(understanding that testing needs to be done for individual needs to address differing history,compound levels,bacterial,fungal,and now discovered underlying taxonomy unknown)
      In fact, I am sitting here with tears, thanking the Lord for starting with you, and especially for how much we have learned and how far things have come. I just realized how very much God has opened up to a very few. We need to be good stewards of this Mel man. More good is coming and it will be for all who are crying alone thinking that no one understands. Trust God, He is able.
      I know you are well enough to feel it is time you can go have your hip surgery. No fun being flipped off a motorcycle and slammed up against a wall huh big guy?
      You won’t say anything but I am asking for prayer for you and your upcoming surgery.

      I will be prayen for you Mel man,
      Big Big hug & Blessings,
      Pammie Mae

      • Mel Friedman is truly bigger than life. He is to be commended for his courage and dedication to the cause of alleviating suffering in this world. This he has done despite constant excruciating pain in his hip from past surgeries that resulted in a nightmare that he was told was inoperable and incurable.

        Recent incredible developments… lets call them “coincidences”… that have led to his upcoming surgery (one that could only be performed by a handful of surgeons on the planet) tell me that God has much more in store for Mel’s life.

        It is no wonder… Mel’s hopes and desires, his determined perseverance, his example of unconditional love and servant leadership… all line up with God’s Kingdom purposes.

        I am both proud and thankful to call Mel my friend. He is certainly foremost in my prayers, and I heartily solicit the prayers of all here on his behalf.

        By the way, Mr. C., you are similarly to be praised for your tireless and selfless efforts on behalf of your fellow man.

        I love you guys, and I say that without shame or reservation.

        Blessings,

        John

    • David West. said:

      hello mel,
      i wanted to tell you something. i have managed to regain my health. i did this by finding out who got healthy and how..then i gleaned the best of each and applied it with a vengeance to myself. i got the common sense (and much more) to do this from guess who (thank you mr cs)
      what i got from you..and this is big, was something i had needed desperately..
      DISCIPLINE!
      reading over your website it was your character that struck me. to be honest something almost bothered me about it.
      you were so organised and as you said yourself, regimented.
      in reality what bothered me was my own too carefree self and i wondered if i had it in me to really pull it together….keeping a specific diet and taking supplements on a schedule….yikes.
      so your friends might have called you an anal nut job and you might be..all i know is that when i applied some of the organisation and focus i saw in you. i started down the path to becoming well. so thank you mel..and thanks to all those that give of themselves to fight this.

    • Hi Mel,
      Do you think that your need for hip replacement surgery is connected to Morg.? Just curious as I know Mr C went through major pain after clearing the known Morg. symptoms. I too became well for a time but was left with gunk as my Orthopedica surgeon described it in my knee. I was scheduled for surgery before becoming too ill to undergo it. My dentist also discovered biofilms of mycoplasma and bartonella in some old root canals. Interestingly he also used the term gunk. He showed it to me. It was black and tar like. i am trying to piece this all together. It seems the skin ailments show up after infection. I just cannot help but theink the joint and body pain is also one of the many symptoms of morg.

      • Mel Friedman said:

        Hello Sharon,

        As far as I know, there is no relationship between needing my hip replacement and Morgellons…. although the excessive amount of metal in my body may have contributed to my being susceptible to Morgellons in the first place.

        You are welcome to visit the “My History” page on my web site which will explain the need for the two operations I am about to have. There you can read my story and follow the same path to wellness that I took.

        I may have been a bit more aggresive in my approach than Mr.C, but I was told I was going to die!

        God bless us all.

        Never give up HOPE!
        Mel

    • Mr. Common Sense said:

      Mel, thank you so much. I’m glad to see you here on the site. You know that I think you and Pam and others who are putting folks in touch with real doctors and leading them to better help are the real hero’s. You actually take your own time to make phone calls, find doctors and so on, so if you ask me you are doing the real work. I consider you my friend as well, I just want you to know that.

      Mr. C

  9. MCS, NAC seems to be “the silver bullet”…I came to your website fairly late last night feeling quite spent…so sick…and Sagen’s comment about max GL gave me such hope…I believe the beneficial ingredient in this product being the NAC…I literally dug some out of the trash that I had tossed, thinking…”this stuff ain’t helpin’ either”and took two 750 mg capsules before going to bed. I am so thankful to tell you all this morning that I am much improved… I truely believe due to the NAC. Bless us all and Thank you MCS. Some how I’m not afraid of a “placebo affect” effect this time.

  10. Wait, reverse that, re: the affect, effect part…I seem to obcess over when to use those two words…so here I am the following evening…after taking a second dosing of the NAC and I’m feeling not so wonderful…I seem to do that when something seems to be working (possibly herxing?) and so on to a few coconut oil capsules…joy oh joy…I grow weary.

  11. Thank you for helping me. I would not have known what to do when this terrible disease struck if you had not been there. Thank you, thank you, thank you. And God bless you.

  12. Torpedolynn said:

    I have been and stayed at a few forums. Each have their benefits. I so enjoy the structure and safety this site gives me. One of the few that I get real hope from. I was too poor to do the poor mans protocol but met a women free of this nightmare on line and fallowed her protocol which is so so similar to Poor mans protocol but on a cheaper and still all organic nature.

    I have been fighting with this protocol for two years now and went from wanting to commit suicide because the were so many different types of bugs trying to live on me head to toe. That was worse then the painful joints and sores on the body and all the crude and junk coming off or out of the skin.

    I am not well yet, but I do have it down to one bug on the skin and every other month cough out a tiny white winged bug. I think part of my not getting finished yet is long term procedure gets one into a rut. I started drinking more coffee even though I use real sugar and not any substitute stuff. The more real I keep my food the further I get. But Caffeine seems to cut me back into a loop. Others may have a different food item that holds them back. Like soda or fake sugar products. Also my over all body function dictates how long it will take to get well. I had a heat stroke when I was about six years old. My sweat glands shut down and I rarely sweat. That may have also contributed to my getting well slower. But I do know to stick to the basic protocol because it has gotten me this far and this past few months for the first time in years I have been sweating.

    It is so weird to sweat that my chiropractor of seven years for the first time had to press on my back which was all sweaty from the drive over to his office. I was very apologetic and did not know how or what I should say, feel, or do. It was so new, but still I was very happy about it. Finally the whole front of my face gets sweaty and if my arm bakes in the sun in the car it gets lightly sweaty. Oh so new and so elating for me. I hope being able to sweat will help my skin to help get this disease out. My only concern though is will it become contagious to others through the sweat??

    Love the message sent hear by Mel as he is much needed and helped quite a few and the other post. So many things said by each person some made me cry and others made me nod a big nod of Yes. Thank you all for your post it was much needed at this point because of feeling like I am in a rut and want so much to move forward. Now I will fight harder again.

    In Light Lynn/TorpedoLynn

  13. You might be interested to read the Latest Issue of the National Public Health Alert, Professor Garth Nicholson, Ginger Savely, My Self and a Great Gastroenterologist all have articles Submitted.

    http://www.publichealthalert.org/pdf/2011_5

    I was very happy that they put everything and everyone together in this issue. Thanks Trisha

  14. If you want health freedom, liberty, peace and respect restored to you on the world stage:
    We The People: Ron Paul 2012
    Source: ronpaul.com
    Ron Paul is America’s leading voice for limited constitutional government, low taxes, free markets, and a return to sound monetary policies.
    Though I am Canadian; American politics very much effect us here in Canada. Vote for Freedom – end the insanity.

  15. Well done, Trisha!

  16. Thank You for your response Mel. I will revisit your site, it has been sometime since I have been there and perhaps missed it.

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