Hiya Auntie M,
Welcome as always.
I do recall one conversation with you during which I came down on you pretty hard... and rightfully so.
At the time, you stated that you were seeing multiple docs who according to you, were all recommending different treatments. I asked you who was in charge of making sure that you were not taking things that offset or multiply each others' effects?
Trying to get people to focus and first do no harm has been my foremost concern here from the beginning.
I know that you have improved greatly since adopting the nutritional (Logos) portion of this protocol (along with the other things you are doing), and that gives me great satisfaction.
As you pointed out, the changes being made to this site are necessary to reduce confusion and to help make the site easier to navigate. I don't claim to have all the answers, and all you have to do is read the many pages of posts here to see that we are not trying to withhold or suppress information.
We have been quick to post live links to other websites and blogs that we feel are making valuable contributions in understanding Morgellons, such as the important work of Mary Lettaio's research group, Pamela's Morgellons Focus site and Mr. Common Sense's blog.
The new rules also provide notice to those who would come here with deceitful intentions that such behavior will not be tolerated.
This site is a safe place where lives are being changed for the better, and I feel a tremendous responsibility to protect its integrity.
I wish you luck with your new book and website. Please let me know if I can assist you in any way.
Good luck and God Bless,
Thanks for your responses. What you don't know are conversations that took place on the telephone with people I met through this forum. So, yes there has been rude behavior towards me and I have expressed my opinion about it.
As far as the rules of this forum, I obviously have to abide by them to get posted now. I continue to feel strongly that NOT posting information that has helped people heal elsewhere that does not correlate with Mel's protocol, but would add new information about Morgellons and products, etc. that are helping people truly heal, that withholding this information is NOT RIGHT. This disease manifests differently topically with many people. Information about different topical and internal solutions, for example, to provide comfort while the internal body is recovering (long term process) would be beneficial to people suffering here. I, of course, absolutely believe anyone trying any of what is recommended or posted here should do it under the supervision of a competent health care provider. Mel is right in continually saying DO NO HARM. I see a competent health care provider every week and she is monitoring my progress.
I have been blessed to be guided to additional sites and information now besides Mel's. His was the first site to which I was directed personally by Dennis Richard of A2Z Corporation when I was extremely ill. Mel was one of my life lines at that time.
Even if individuals cannot post about what has been helping them, they should be able to post websites that link to vital information. I can email Mel these websites and he can choose to add them somewhere else on the site if he chooses. I do understand that information conflicting with or adding to Mel's information can be confusing to those who are new to the Morgellons scene or very ill, as the illness can take a toll on one's cognitive abilities and coping skills. So I understand the reason for the rules.
What I have decided is to start my own blog site for women recovering from Morgellons (I need to get a domain name and have not decided on one yet.). There are issues specific to women, which may be uncomfortable for some to share here and elsewhere.
Mel has been so incredibly generous in allowing people to email and call him. There are women, because he is a man, who may not be able to reach out to him. There is a silent epidemic of sexual and physical abuse towards women in our country and because of this, many, many women who have this disease or will get it may not have the ability to stay in the communication process here because this site and others are created and hosted by men. There may be other sites hosted by women. I know two where they sell products specific to healing Morgellons, but do not have active blogs.
I see a need for the site I am going to provide. I'm also going to write a book and publish it on Amazon about the psychological effects of this disease and different ways to cope. I am developing that outline now and have already signed up on createspace.com to publish there. Anyone who wants to contact me about any of this can email me at firstname.lastname@example.org. Please put in the email heading, 'RESPONSE TO POSTING,' or I won't open the email.
I will return to this site to catch up on what people have posted in order to learn more. Thank you all for taking the time to read my posts and to offer support and valuable information to me. I am grateful.
The emotional impacts of this disease are overwhelming to say the least. Feelings of fear and anger give way to powerlessness and hopelessness, only to cycle back around through terror during the worst of times.
Interpersonal skills are put to the ultimate test when interacting in a community of people who are all experiencing such prolonged trauma.
From that perspective, it is easy to see how myopic and disinterested practitioners have dismissed the physical symptoms confronting them and labeled Morgellons sufferers with DOP.
It is also easy to see how anyone who has been through this and emerged anew would have pretty strong feelings about the things they felt helped them to get there.
Mel certainly does, but to his credit, he has remained open to new ideas and treatments as long as they do no harm and do not conflict with what they are already taking. I have no doubt that will not change.
However, Mel has seen enough consistent feedback from those who have taken his protocol seriously to know that its basic approach of repairing the bioterrain and restoring integrity to major organ systems is right on the mark. With the addition of the testing to the protocol, Mel is convinced that all the tools needed to help anyone who is serious about helping themselves have been assembled here.
I expect that Mel's protocol will continue to evolve and improve as new information is constantly being uncovered. It is very encouraging to witness the transformation taking place in so many here... we have much to be thankful for and much to look forward to.
So chill with the negativity folks, and lets focus on getting well.
A couple of notes:
1. Re-read the rules of this forum. I helped Mel re-write them this morning. Due to the fact that a lot of other people have been bringing other people's protocols onto his site and causing confusion- he has decided to limit the discussion on his forum to only his own protocols. You don't see him (or the people who use his protocols) going out to Dr Staninger's forums and posting his protocols there, so he would appreciate it if others didn't post their protocols here. Maybe some sort of mutual exclusion agreement.
There are lots of other forums out there where you can share your successes with Dr Staninger's (or others) products, so by his limiting your posts on this forum, it shouldn't diminish your ability to post her stuff on other forums. I'm sure the moderators of those forums wouldn't mind you sharing your experiences.
2. I'm not sure you are insinuating that anyone here on this forum is insistent that this protocol is the only one out there. I personally have never see any evidence of this, but a lot of people who visit and post on this forum seem to take exception to a lot of things here un-necessarily and openly display their criticisms. I am sure there are others who may be insistent (on other forums), but on this forum there is no such evidence of this behavior, hence I am not sure why you bring it up.
3. I would take the time to re-read the new rules to this forum and before the next time you decide to post information about another protocol here, you may want to contact Mel to be sure he is ok with it- or he may delete it upon reading it.
Good luck with your healing process. It is always a positive thing to apologize and it is a good way to make amends and start over. There are lots of giving people here who will help if you just ask for it.
|Auntie M **
I ordered the far infrared pad recommended by Dr. Staninger on Monday. It takes 2 weeks to arrive from Korea. You can order it on healinggrapevine.com. Thanks Mr. CommonSense for sharing that you find it effective. The far infrared saunas at the local spa are continuing to help reduce the bugs and fungus on my skin, as well.
As I said before, each of us has a different and unique form of this disease based on our geographical location, the different toxic exposures we've individually had recently and throughout our lives, our genetic make up, any other health deficits, etc. If Dr. Staninger is right about the conclusions she has drawn based upon her environmental toxicological research, and I believe she is, we are all in a new ballpark now. It has been difficult and frightening for me to begin to grapple with this new information. Just the symptoms, themselves, have been terrifiying to me, as well.
I have given some thought as to why several individuals have gotten really forceful and emotional about insisting that their way is the right way to get well. I've had three people with three different protocols that work for them individually tell me to only do what they are doing. Two of them have raised their voice to me on the phone. That behavior feels so inappropriate to me. It feels arrogant, controlling and disrespectful.
Besides initially pissing me off, I've given some thought over time about why those behaviors are occuring. I know from my training and work as a counselor and 20 years of intensive community building with a group of individuals with whom I lived and worked that some individuals who have been traumatized and have suffered powerlessness, sometimes display those behaviors in relating to others.
Here's my theory: everyone who has and has had the symptoms of this disease has been emotionally, as well as physically traumatized. Now I'll personalize this.
I have been traumatized. In coping with the post traumatic stress that continues to get triggered when my physical symptoms seem to get worse or just don't go away fast enough, I can choose to either internalize or externalize the fearful and other emotions that come up during this process. If I internalize, I can become depressed. Some have admitted to feeling suicidal. If I externalize, I get ANGRY. I have raged my way through this process (in the privacy of my home) and in front of my therapist who has been a lifesaver. I have also vented a great deal with my Morgellons phone buddy whom I talk to almost daily. We support each other. She has been another lifesaver.
Another way I can externalize the emotional impact of this disease (which I believe can be severe for most of us mere mortals) is to try to control external circumstances, which includes how I relate to others, in order to try to regain a sense of power. Losing control over my physical body was something I had never experienced to this degree before.
I am aware, too, that there have been suicides due to the severity of this illness and the lack of support by ignorant professionals in positions of authority and frightened family members and friends.
There are those who are trying to help others cope with and recover from this disease who have lost people to suicide and that can be traumatizing. I have lost someone dear to me to suicide in my life. So unconscious fear of losing someone else whom you are trying to help can trigger impulsive, overbearing behavior. Thinking about this has allowed me to move into a more compassionate place towards myself and others.
As usual, my post is way too long. Mainly though, I encourage everyone to acknowledge that this disease has an emotional toll and that can affect the quality of our relationships with each other. I encourage those who are joining this forum for the first time to find someone with this disease with whom to mutually process the continuing emotional impact. Be honest. Cry. Rant. Listen. Know that you are both so brave. I met my Morgellons buddy through this forum and we have even socialized in person.
When I was much sicker, I was frightened, ANGRY, untrusting, and defensive. To the best of my knowledge and recollection, I have gone back and apologized to each individual to whom I may have behaved inappropriately. If I missed anyone here in this process, I apologize now. I need all the friends I can make during this healing process.