Morgellons Art

I've been considering an idea and would love some input. I'd like to start an online art show containing representative art work by Morgellons sufferers. I am picturing it as a means for those who haven't had Morgellons symptoms to experience it via art. I know we have all had our separate experiences and wonder if this might be a way to reach the general population.

Thoughts? Thanks, Joe

Pay it Forward!

There was a movie that came out ten years ago or so. My girlfriend at the time got it out and we spent the evening watching it. Pay it Forward wasn’t an especially great movie, but the message was. The concept of having someone do good for you and you passing the good deed forward to others is powerful. Is it happening in the Morgellons world? You bet! I wanted to share some of the people I see passing it forward, sharing their knowledge and skills and trying their best to pay it forward to others. Here they are- some of the people I consider Morgellons heros.

Mr. Commonsense- Here is a man who has taken endless hours of his time to try to bring some common sense into the confusion. He has posted a array of useful information on managing and healing from symptoms. His blog has plenty of followers and endless hits. I usually try to direct sufferers towards his blog (http://morgellonspgpr.wordpress.com/) to find well organized and worthwhile sharing on all things Morgellons. His most recent entry suggest some action to get the CDC to share information on Morgellons. He asks us to "Stay tuned"...I will and hope you will too!

Pam Crane- Pam has acted as a link between sufferers and competent health practitioners. She has regular online blog/radio shows which provide a wealth of information and allows call ins for questions. Her most recent interview is found at: Morgellons Focus on Health Online Radio by Morgellons Focus on Health | Blog Talk Radio

Ramona at Healing Grapevine- Ramona shares excellent information on healing through balance, detox, herbs and remedy success. She gives her writing a personal spin and does not hold back from opinion. Check it out at: http://www.healinggrapevine.com/ .

Judith Knilan's- Wrote a book on her personal account with Morgellons and gave free access as an ebook (I have not been able to access this, but know others have. Give it a try with link at: http://morgellonspgpr.wordpress.com/2010/03/21/free-morgellons-e-book-by-judith-knilans/). She still contributes and shares as time allows (she is healing from cancer at the moment. Prayers and good thought are welcome!)

Others- I know there are others who have shared online. I cannot list all, but will make one general statement; it appears that all who document recovery or management of symptoms aggressively reclaim their bioterrain.

Future Hero= You! A common thread between people managing or eliminating these symptoms is detoxification. I know for myself it works and it appears I am not alone. I request everyone pursuing health document what they are going through. You never know who it might help. Pass it forward!

Radio Show with Pam Crane

I don't know if I posted this, but thought I should. This radio show originally aired in the spring. I thought some might like to listen. I was really nervous for several reasons. Here it is: http://www.blogtalkradio.com/pamcrane/2011/04/28/beyond-the-barrier-a-hypothetical-model-for-cause-and-progression-of-morgellons-disease

A Book Worth Reading and Normal Communication in the Age of the Internet

You know I'm big on communication. I believe in the power of words whether they are said or written. Words are powerful and I suspect they were even from the first "Ug" or "Auua". I also solidly believe actions speak louder than words. So, words are powerful but actions are even more powerful.

I've already recommended Daniel Reid's book The Tao of Detox. I'd like to step it up a notch and say it should be required reading for anyone suffering from issues of toxicity. Form beginning to end the book provides the reader with clear guidance on how to tackle body maintenance in a world becoming overwhelmed with toxins. I've already handed my copy off to my massage therapist sister.

I mentioned my earlier recommendation by emailing the author and was impressed with his quick and Morgellons's specific recommendation of intensive alkalinization by bath. Here's a well published author and expert on the delicate balance between Eastern and Western medical thought taking the time to send an email off in my direction. It is obvious he cares. I wish there were more people with such credentials openly communicating with our crowd!

And, speaking of our crowd, I did make some effort to communicate with the CDC on their recent twitter session. I was hoping to see other Morgellon related tweets, but didn't. Am I trying to put a guilt trip on the Morgellons's community? I hope it doesn't come off that way. The real culprit of not making communication efforts is the CDC itself. I was pretty much ignored and given the brush off. When there are so many suffering and waiting on the results of such an important piece of research, how can this government agency refuse to openly communicate? Action or, in this case, inaction speaks loudly; to them we are not important.

I know there are real challenges in communicating online. I've tried my best to make my words worth reading. I try to keep my audience in mind at all times. Maybe, just maybe, we (the CDC, MRF, Morgellons researcher, Morgellons medical personal, and sufferers)should all take a deep breath and say what needs to be said...maybe online or maybe in person. Let's see if we can make communication normal. Let's see if we can end the suffering.

Twitter CDC?

I've posted this message on Mr. Commonsense's Blog as well-

I’ve just signed up for twitter and, honestly, I’m still trying to figure it all out. I am following the CDC though and thought people might want to send messages asking when and where the CDCs report on Morgellons will be released. I’ve sent a couple already and wonder if they will respond….maybe numbers could force the issue? Since they are having a live session tomorrow with a “disease detective”, I feel it is a good time to ask.

Their message:
Wondering how CDC stops outbreaks? Ask a disease detective. Live chat 9/16, 2pm EDT. Send your questions @CDCgov.

Reclaiming Your Internal Environment- Part 1

As I sit and think about the steps one could take in reclaiming their internal environment, many avenues come to mind. I suspect some ways are better than others depending on our individuality and specific toxicity issues. Baseline testing through various companies could be an effective way of measuring progress, though I know financing such a venture may be less than ideal for those on a tight budget.Keeping blanket goals for anyone seeking a cleaner internal environment, budgetary concerns and approaches I found to have "the most bang for the money", I will present six parts on the reclaiming process. My suggestions are by no means all inclusive and are certainly open to improvements; still here's the break down in topics for my sharing.

Part 1- Introduction
Part 2- Opening Detox Channels
Part 3- Your Home
Part 4- Specifics Related to Dental Toxicity
Part 5- New Habits to Build into Healthier Living
Part 6- The Progress, Challenges and Stumbles

As always, I suggest those suffering from toxicity (and let's face it...who isn't)bring a medical professional into the picture to share before implementing any health related plans. Your suggestions are very welcome at any point along the way. Let's hope for happy trails, Joe

Treatment of Morgellons Sufferers

I have been writing an essay on the treatment of Morgellons sufferers. It has not been an easy subject to approach. In an article titled "Delusional Infestation", Freudenmann and Lepping give step by step suggestions for handling those dealing with these symptoms (found at: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2772366/?tool=pubmed ). It is easy to get angry at their suggestions and judgmental wording...instead I hope to design a better approach. One piece I am suggesting is a questionnaire. I put it below for review and suggestions. I want it to be a means for positive progress (both for the patient and the medical professional). Thanks for any input! Joe

Morgellons Suggested Questionnaire
Name _______________________ Date ______________
List all symptoms experienced (expand on back if necessary)- ________________________________________________________________________________________________________________________________________________________________________________________________________________________
When did symptoms begin? ___________________________________________
What time of day and what setting do symptoms regularly occur? ________________________________________________________________________________________________________________________________________________
Describe progression of symptoms. ________________________________________________________________________________________________________________________________________________________________________________________________________________________
Location of crawling sensations include: ________________________________________________________________________________________________________________________________________________
What are patterns related to crawling sensations? Do they always start in one location? Are they worse in certain areas? Do they seem to spread across certain areas? Please describe: ________________________________________________________________________________________________________________________________________________________________________________________________________________________
Please describe life history of health. Note any times you have been in the emergency room and any diagnoses. Give approximate age, date or distance into past (ex. 3 years ago, etc.). ________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________
Locate any skin lesions on body (chart on drawing)







Give any more information you feel needs documentation. ________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________
THANK YOU FOR CONTRIBUTING TO THE UNDERSTANDING OF MORGELLONS

Comparing Tribes: HIV/AIDS and Morgellons Part 2

Before getting started on a short comparison between the HIV/Aids and Morgellons Tribes, I wanted to update on my own health. While I am less than perfect (symptoms seem more invasive at night), I’ll have a good day or two and then begin to feel the symptoms of whatever I’m carrying again. I have an appointment lined up with a tropical disease specialist in Rochester in 10 days; I am hopeful he will have answers and point me in the direction of complete health.

My comparison of the Tribes comes from thoughts of having HIV (though as I said last time I tested negative). I learned from my Morgellons’s experience to make use of the internet as a tool. Assuming I would find out I had HIV, I began asking medical professionals for direction. I also took the time to look into online support from other sufferers. Of course, I also looked for possible cures.

While there are many “Tribes” of disease sufferers found online, I find Morgellons and HIV/Aids similar in the generally accepted diagnosis of “incurable”. I know for Morgellons this is not true (see my own story “Hell and Back Again” as well as a growing number of other stories) and there is a recent case of a German man who was HIV positive for 16 year and, after a bone marrow transplant and chemotherapy, is now HIV free. Miracles do happen!

One of the surprises I found among the HIV/Aids Tribe is a prevalent approach to live life fully. They have get-togethers, dances, cruises, and even marriages. My heart goes out to these individuals in the face of such a condition. They are a good example to all of us.

The only organized Morgellons event I know of is the now annual Scientific/Medical Conference on Morgellons Disease taking place in a church conference center in Austin, Texas (it is something, but strikes me as a little sad). I know there are some support groups out there. And, of course, there are online support groups (my opinion…some good, some bad). Yes, we need more discussion among the medical community, but we also need some positive means of connecting as individuals for fun!

One other comparison to be made is the medical worlds view towards these separate camps. It is disturbing there are still peer reviewed and accepted articles related to Morgellons being delusional. When will the tides turn? Of course, this one piece the HIV/Aids Tribe has as an advantage; the medical world knows what they have is real and they have the means to diagnose it. In comparing numbers of medical research found on pubmed.gov, the current number of pieces dedicated to Morgellons is 30 (many of the delusional camp)and HIV/Aids is 97,891.

What can we, The Morgellons Tribe, take from considering the HIV/Aids Tribe? Let me share my opinion.

- Open to faith, let go of fear (though I feel both tribes are doing this exceptionally well)
- Live life as fully as possible (however, I do not recommend a trip to Africa)
- Organize, support, and assist each other- A Morgellons’s Cruise? Why not!
- Let go of anger, open up to hope
- Build knowledge of medical condition
- Share what you learn along the (document your own story)

We have much to learn from one another. Certainly, sharing within our own Tribe helps. I hope we can expand our thoughts and prayers to others who also suffer beyond the Morgellons community. Peace to you with HIV/Aids.

Comparing Tribes: HIV/AIDS and Morgellons Part 1

If you follow my blog, then you know I've spent much of this school year in Africa and returned to the US after becoming ill. I've struggled through some bad symptoms which seem to come in waves.

Two weeks ago I remembered an incident which took place in Arusha, Tanzania. I had purchased a hair trimmer from a street vendor and, after finding it didn't work, went back to get my money returned. I got angry and started shouting at the man and, as seems to be common in Africa, a crowd circled around. One of the men told me he would get me to a barber (though it sounds strange, I believe he had "bewitched" or hypnotized me. I cannot remember has face...only his hand gestures and voice). I ended up at the local market which is as dirty a setting as you can imagine. Knowing one in six is estimated as infected with HIV in Tanzania (which is actually lower than much of Africa), I would never have freely chosen to go to such a setting where blood could easily be transferred.

Anyhow, the memory of this incident flooded my mind as my health recently worsened and had symptoms characteristic of HIV. Once again, I felt I would have to confront a condition considered incurable. I set up a date to get tested and assumed the worst. I won't leave you hanging. I was tested yesterday and, thank God, I do not have HIV!

One of the HIV/Aids online support groups uses "Welcome to the Tribe" as their motto. I like the idea of a tribe. It is a comfort to those suffering, I am certain. A Morgellons tribe needs to form. In my next entry, I plan to compare the tribes; I think we could learn much from understanding each other.

Communications

Wouldn't it be great to have sufferers and Morgellons medical researchers sit down together and talk? What a concept, eh? People who are experiencing the symptoms (or have experienced) having discussions with people who are trying to end the suffering. There are some really great people out there trying to help understand Morgellons. Let me mix the old and new.

Trish Springstead has spoke with me on the phone and endlessly via emails. We have become friends. She has had success in helping many people and continues to help. She has been a constant supporter of my efforts and gave me exceptional support in my overseas venture. Thanks, Trish!

Another good, good friend is Mr. Commonsense. He has put endless time and effort into the blog Morgellons- A Mundane Approach at: http://morgellonspgpr.wordpress.com/ . His blog is well followed and offers endless resources to the Morgellons Crowd. If you haven't visited him, take a look!

In the last couple of days, I've been able to have productive communications with several others connected to the Morgellons community. Vitaly Citovsky, PhD, a biochemist from SUNY at Stonybrook, had been assisting in some of the research through the Charles E. Holman Foundation. He was willing to read some of my research and offer several comments (I'm certain he is a busy man, so I was impressed with his response).

I also connected to Dr. Dan Harper this morning on the phone; we actually spoke for quite awhile. I emailed off links to my research. He strikes me as someone who sincerely listens to his patients...and truly knowledgeable on all facets of Morgellons. I'm excited that he will be doing a study related to Morgellons...and hopeful for some answers!

I sent off some materials to Dr. Andrew Weil also (why not?). His website suggest the CDC will offer answers sometime soon (anyone holding their breath on this, please stop). He's popular enough and he'd make a good Morgellons liaison.

I'm not certain how to end this entry. I guess it pays to keep trying goes without saying.

Educating Politicians

I've been back in my hometown for a couple of days. I've decided to see if I can rent a room for four months and substitute teach until summer (a many faceted decision). Wandering through downtown, I wondered if Matt Baker, State Representative in Pennsylvania, had received an email I'd sent some weeks ago.

I used http://www.congress.org/ to send off notes to congressional members, state representatives, and even President Obama; with a single click you can send off a note to all of them. My note related to the Morgellons Disease research by the CDC (asking to pressure for the release of their findings).

Anyhow, I went into Matt Baker's office and spoke with his secretary. She took down some notes and rushed down a hallway.

"Hey, Joe, come on back," it was Matt Baker himself. "What can I do for you?"

I stepped into his impressive office and sat at my side of the boat sized desk. "I wanted to see if you'd gotten my email related to the CDC and release of their Morgellons Disease study."

"That's federal. I'm state. I really couldn't do much about it." Then he explained, "I get from three hundred to five hundred emails each day."

So, we discussed it for a couple of minutes. He gave me his card and said, "Email it to this address." I shook his hand and thanked him for his time. When I got back to my friends home I emailed him and attached my account of recovery and my historic research connecting Morgellons to mercury (both of these were published in the peer reviewed medical journal Explore!). He emailed a response say, "Nice to have met with you."

Did my words go anywhere? Do my efforts have any effect? I may never know. I do know though it is important to try. I'm certain the number of citizens bringing up an issue may justify further action by a politician. Generally politicians aren't my kind of people, but Representative Baker was attentive and seemingly interested; it'd be great if he passed on these concerns to someone who can have effect.

We do need to educate politicians on Morgellons Disease. We need to make the situation crystal clear and keep pressuring those who have been chosen to represent us.

Recovery Account Volume

The internet has been called the information highway. While I agree there is much information, there is also much misinformation. Morgellons Disease is a still not well understood and yet opinion on cause and cure seem endless (certainly my blog being one, as it is dedicated to the view of cause being toxicity).

I would like to create a volume of a dozen or so accounts of recovery from Morgellons (I'd be willing to edit and include my own). The volume could be made available free of charge online.

I'd like to hear from you on this topic. Does such a volume make sense? Do you have your own story of recovery? I do think patterns could emerge from creating a collection of recovery stories.

It's a short blog entry, but I'm hopeful it will prove fruitful.