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Morgellons Disease Awareness -  and Morgellons sufferer, Ayla, journals her experience with the disease I'd like to introduce myself, I'm Ayla, a 59year old artist and graphic designer who contracted Morgellons in Jan.
Marilyn and David Weissing, both Mayo Clinic employees, knew something was wrong when their 19-year-old son, Karl, asked to be taken to the hospital one summer evening in 2014. He spent the winter after his high school graduation managing an organic dairy herd in Missouri.
For this quiet and reserved young man, the hospital was a difficult place, his family says.
His recommendation: Perform the Whipple procedure, a complex operation to remove part of the pancreas, part of the small intestine, and the gallbladder. The pathology report from her surgery showed her breast and lymph nodes to be free of cancer as a result of the chemotherapy.
When Lynn was hospitalized with low hemoglobin and needed a blood transfusion, a nurse saw that she was frightened and sat with her throughout the infusion.
And one morning when Lynn went for chemotherapy, the nurse noticed immediately that she didn't seem like herself. As part of an active family, Christina, along with her husband and their five children, enjoyed running, biking, fishing and snow sports. In 2013, on the day after Thanksgiving, that active lifestyle was interrupted by what Christina initially thought was strep throat. She was admitted to the hospital, and shortly thereafter, Christina learned she would need a bone marrow transplant.
After a long wait, Christina found a donor and had the transplant on June 4, 2014, which she calls her new birthday. While the bone marrow transplant gave Christina a second chance, she's had some big bumps in the road to recovery.
When she came out of the coma, Christina had to go to physical therapy to learn to stand and walk again. Today, Woodside says she is going to physical therapy sessions twice a week and making great strides. A diagnosis of stage IV melanoma can be a frightening prospect, with surgery and chemotherapy often an integral part of the treatment regimen.
The 11-year-old from Beijing, China, prefers to be called "Jack." He is suffering from what is known as an anaplastic astrocytoma, a grade 3 malignant tumor, according to his doctors at Mayo Clinic.
Thanks to Ben's travel promise to Jack, the process of securing a travel visa was already underway. By the time he was admitted to the Inpatient Rehabilitation Unit on the Saint Marys campus, Jack had lost the ability to use the lower half of his body. While Jack was receiving therapy on the rehabilitation unit, nurses gathered donated supplies for Jack's family, and his physical therapist was able to get him a wheelchair. Doctors designed a four-week course of radiation therapy specifically for Jack, so he could be well enough to return home to China by in August. When Jack first arrived in Rochester, he told his therapists his goal was to be able to walk to school again. It's clear Jack and his family are heroes to his care team who are impressed by their "do everything, do anything" attitude to overcome financial, distance and language barriers. Doctors in Hollis' home state of Georgia found that cancerous cells had invaded her chest, causing fluid build-up around her heart. Watch the video below to learn more about Youngner's story, which highlights the Mayo Clinic Model of Care. But those glimpses were fleeting, as Jenny's body rejected both transplants after little more than a week, leaving her sightless again. During initial examinations to confirm the cancer diagnosis, doctors discovered Jenny had glaucoma in her right eye. Today, Jenny continues to rejoice in the ordinary beauty that was hidden from her for so many years: the vibrant yellow of an egg yolk, the soft green of new buds on trees. That's part of the message she wants to share with the world through a book she's written, "She Walked by Faith, Not by Sight," and through speaking engagements. Even though she essentially expected to hear the words, "You have cancer," she says they still caught her off guard.
Kristen knew she was going to need to get past the shock of her diagnosis and come up with a plan of attack.
To that end, Kristen offers these words of encouragement, and advice: "Embrace all you do with determination and a fighting spirit," she says. After he arrived at Mayo Clinic, Scott went through a series of blood tests and other exams, so his care team could better understand what might be happening.
The assessment focused on Scott's adrenal glands: two small, triangular glands located on top of the kidneys.
Scott had undergone a similar test with his local doctors, but the results were inconclusive. Reflecting on it now, Scott believes that taking the trip to Minnesota in the heart of winter was one of the best decisions he's made. The door didn't open, however, and no one came in to tell the family it was a practice session. Although the diagnosis sounded devastating, the Mayo Clinic team told the couple Anika had a pretty good prognosis, with chemotherapy and radiation, and they'd expend every possible effort to treat her. By the following July, he was back home working a construction job, making a movie with some friends, and playing in a bluegrass band with his brothers.
The progression of his illness and the interruptions of his around-the-clock care left Karl unnerved and yearning for some way to regroup. He almost always emerged with an improved outlook and a renewed fortitude for facing the next challenge, his family says. Throughout, he and his family were grateful for the outpouring of care and support he received from Mayo Clinic staff. Asbun felt confident the Whipple was best and that the procedure could be minimally invasive, without opening the abdominal cavity. She participates each year in the annual PanCan Walk and even donated her cells to the BioBank at Mayo Clinic, a research initiative that aims to build cell lines and test new treatments. She completed five months of chemotherapy, and had a lumpectomy and removal of some lymph nodes, followed by radiation therapy. Be the Match, operated by the National Marrow Donor Program, is the largest marrow registry in the world and helps patients find life-saving marrow donors and provides support throughout the transplant process. But Frank Moseley, a Jacksonville, Florida, native with an advanced melanoma diagnosis, was eager to do whatever it takes, even going beyond the norm, to give him the best chance of recovery.
He had the mole checked by his dermatologist, and a biopsy confirmed melanoma, which led to him undergo surgery a week later.
But instead of sightseeing, their focus is now on Jack and doing anything possible to stop, or at least slow, his deteriorating and deadly condition. After a shower, Jack told his father that his right leg felt the heat from the shower differently from the left one. But they had recently vacationed on Mauritius, a small island off the Coast of Africa in the Indian Ocean, where they met a Chinese woman from America, and Lili had saved her phone number. There they met new friends who listened to the family's story and made sure that Jack's case came to the attention of Mayo Clinic doctors. They wanted to slow down the rate of neurologic deterioration due to the progression of the tumor and improve the quality of his life. His father was carrying him to and from bed, so he could go to the bathroom, bathe and eat. With no insurance, no funds other than personal savings, and the family's decision to put their home up for sale, Jack's team ensured he got the care he needed.
During a stop there, they visited a film production set and met actor Chris Evans, who plays Captain America. Iafrate recently chatted with Ben, and told him, "Your family has touched the hearts of many people here.
So in late 2014, when the mother of one was "just feeling yucky, tired, nauseous," she says cancer wasn't even on her mind. She was transferred by ambulance to Mayo Clinic's Florida campus, where doctors were preparing for a delicate procedure to drain the fluid.
She cooked and baked, cleaned and washed clothes, and cheered her children on from the sidelines of their activities.
The diagnosis would prove to be a blessing, as it led Jenny to Mayo Clinic, where a team of providers would work together to not only treat her cancer but also restore her sight. Baratz had told Jenny that it might take as long as 10 days to know whether the operation was a success. As a federal law enforcement agent, pre-med student, and competitive powerlifter for USA Powerlifting, the 38-year-old had made a career out of being in control of her surroundings and circumstances. His trek north, in the opposite direction of most midwinter travelers, was born of frustration and determination. During this test, using imaging as a guide, a radiologist places a tube in a vein in the groin and threads it up to the veins that drain the adrenal glands. Aldosterone levels that are significantly higher on one side usually point to the possibility of a tumor on that adrenal gland.

Within 48 hours of the tumor being removed, his blood pressure and potassium returned to normal ranges.
I've been moved to create awareness tools that help both educate healthcare practitioners and the public about Morgellons Disease (see Awareness Poster) as well as share what I've learned from this experience.Many of the skin photos in the photo galleries are mine. His care team reached out to doctors all over the country to determine how best to respond, and he began chemotherapy within a few days.
During treatment sessions, she focused on creating a safe space where Karl could be himself and have support to deal with being sick and living in the hospital. But having access to Dion's services gave him an unexpected reprieve from the demanding medical routines that occupied most of his days.
So she was presented with two options: Proceed with the Whipple or undergo several weeks of chemotherapy to shrink the mass prior to surgery.
So she and her husband moved from their home in North Carolina to Jacksonville, Florida, to be near Mayo Clinic's Florida campus. These lesions in the part of the tube next to the ovary often progress into the ovary and become malignant. Then Ben read a story on the Internet about a man with an illness similar to Jack's who traveled from China to America for a successful treatment. In one significant way, though, Jenny was different: She did all of these things without sight.
At age 37, a professional with a young family, Scott wasn't content to accept the treatment options presented to him. Similar aldosterone levels on both sides generally mean both the adrenal glands are overactive.
He has been able to stop taking three of the four medications he had been on before surgery. Another 12-week round of treatments was ordered, and his second MRI scan suggested that the growth of his tumors had slowed down, and his condition had stabilized. She couldn't help there, but she mentioned that she lives in Rochester, Minnesota, close to Mayo Clinic. Following the CPR, Hollis was put into a hypothermic coma in hopes of avoiding brain damage. Using imaging that showed the adrenal glands in more detail and additional veins around the glands, Scott's care team discovered a noncancerous tumor in his right adrenal gland.
After months of lack of communication elsewhere to not have to explain myself again and again was a big relief. Like most, I panicked bought a lot of unnecessary products—some toxic, then managed to pull myself back from the brink of actually hurting myself. A dermatologist gave me Ivermectin which caused a Herxheimer (die-off) reaction and many of the black particles I'd been seeing with a scope surfaced. This gave me great relief from the discomfort of what felt like fiberglass embedded in my skin. There were NO fibers visible in my skin in the previous months before taking the medication. Within two days of taking the Ivermectin, I watched in horror as fibers started to rise to the surface of my skin. That plus coming off the tail-end of the pharmaceutical seemed to stop all the symptoms of itching, biting and crawling for approximately the next 4 months.
The only thing that hadn't cleared up was the hyper-sensitivity to my skin which I thought I was stuck with for the rest of my life, an unfortunate consequence of having Morgellons. Had I not been actively using a microscope to look at my skin during this period, I might have presumed I was well. The skin however, doesn't lie and told a whole other story for under it's surface, fibers and particles were clearly still present—multitudes of them. Early on, I'd heard about the testing that Pam Crane of Morgellons Focus On Health (site no longer active) was championing and felt that it was probably the way to go.
My only problem with moving forward was a lack of practitioner, as I felt having the best testing in the world wouldn't mean anything unless someone was up to the task of decoding it's contents into a meaningful protocol, sort of like buying a Cadillac that arrives without the key. I wanted to have a conversation with whatever doctor I was going to see and to hear them speak about their philosophy of healthcare. Just try to get a physician on the phone before actually making an appointment and you will find it is an impossible task (especially the high-end specialists).
She talked about The Great Plains Labs and why the testing used in Functional Medicine is so important for our community. She sounded like she knew how to do her job well and was more than capable, indeed she had impressed me as understanding how to approach the disease in a holistic manner that aligned with my own healthcare philosophies. Let me remind you that I felt fine when I first contacted Nancy, but the emerging fibers showed me I was not.
Nancy forewarned me that treatment would kick up all the initial symptoms I had when first ill with Morgellons, such as itching and stinging and that I might experience more fatigue with die-off, possibly even get lesions although I hadn't had many lesions previously. Within a week and a half of beginning this new protocol all the discomforts she mentioned came back.
Black particles began coming out from the skin, sand-like crystals were suddenly pushing from the scalp, I was itchy and uncomfortable but this time around it was at a much lower volume then at onset. I have experienced some lesions, in the form of 'papercuts' and blood spots appearing on the skin.
They were tiny and healed quickly. It took close to 3 months for the symptoms of this detox to disappear, lessening with each week. We added in another few products to my protocol fine-tuning the process. Once all my symptoms had abated I was ready to move on to the next step and do a colon cleanse.
After that, I began with chelation therapy (Chelex by Xymogen) to remove heavy metals. Nancy has taken me through this journey with constant support through email. The fact that she is able to tell me what I can expect and interpret what I am going through is invaluable. Actually, I feel spry and 10 years younger than my 55 years of age (at the time this was written), an unexpected and very welcome gift.
Still, they are here and I am monitoring them carefully. I am convinced of the value of the Great Plains and Metametrix testing.
It just makes sense that one would want to know the particular weaknesses of their body before embarking on a journey of healing. Getting the labwork done and seeing Nancy are the two smartest things I did throughout my ordeal. Morgellons for me is like that impossible teacher I had in my youth.
Therefore, I try not to rail against the unfairness of the experience, but to look at how much I learned and the ways in which it has stretched me as a human being. AylaWhile I am not comfortable sharing my protocol as it is specific to my lab results, I will outline what I feel are the bare-bones minimum I'd look to take if I were building a protocol.
This would be a good probiotic (I use 3 different kinds throughout the day as was indicated by the results of my testing).
I'd include a biofilm buster which breaks down the cellular matrix in the gut that inhibits absorption of necessary nutrients. Certain of the B's can become depleted when the body is fighting infection, so a good B-complex seems necessary. Also, Mr.
Common Sense and now Clifford Carnicom have written about NAC and it's benefits along with vitamin C in helping quell the symptoms of our condition. I'd look into this as a close friend from the community began taking both high amounts of Vitamin C and NAC and her symptoms disappeared.
She was taking 3,000-5,000 mg of C spread throughout the day and 600 mg 2x's a day of NAC both in the morning and at night.
She eventually reduced it to 2,000 mg of vitamin C and 600 mg of NAC because the NAC was giving her headaches. The lesser dosage has been fine for keeping her symptoms of crawling, biting and stinging away. When she went off the protocol symptoms came back and when she again resumed, theywent away. Nancy has stated that the clients she sees that do this first make themselves much worse and take longer to get better. The results arrived right after I finished my third week of chelation. My total toxic representation was OFF the chart with high levels of antimony, silver, cadmium, tin and magnesium.
I have a host of other metals as well, they just were at lower levels than those mentioned above. Once Nancy reviewed my test results and knew how I was responding to the treatment she modified my protocol to include a liver support, and the addition of 3-4 new products that would also help balance me out. I also had some tiny red spots appear on the skin without breaking through.Red spots appear on the skin. Based on what was going, on Nancy pulled back on the chelation so that the process is even slower and gentler until my body can adapt. Most are not readily apparent unless you really look for them. Hair The Morgellons has moved into my hair. An acupuncturist, pointed out after looking at my hair photos, that there were multiple "hairs" emerging from one follicle. Helicobacter pylori, the bacteria I had with high levels the first time I was tested, is completely gone. There was a new bacteria that showed up on this round of testing that wasn't on the previous.
I'll be taking a prebiotic to address the new bacteria as well as some new products from Xymogen to open detox pathways. I'm excited to be moving in a new direction. Every time we do a new test, I see the value of this approach. Randomly throwing supplements at the body without being tested, with the hope that something might work, seems a dangerous practice.

This episode might have lasted longer than necessary had I immediately washed all my clothes but I got lazy and didn't wash them for a few days. I am putting a garden in upstate and often have my hands in the soil (without gloves) and have found that I am fine. The only itching I've got is from the occasional mosquito bite (and yes, these are real mosquitoes). Note that I have been letting my supplements run out in the last few months because I needed a break from taking approx.
I wonder if the return to itchiness had something to do with my letting down my guard and not watching my pH. After the first day of swimming, I noticed small circular red blotches appear under the skin of my calves and thought, uh-oh, here comes trouble. I FINALLY have a microscope again (it was replaced after more than 7 months at the manufacturer!). I had a few breakthrough 'papercut lesions' on the hands which I don't know what to make of. I stopped the Ormus because I wanted to document F-6, which has gotten quite a buzz in the Morgellons community.
For now, I want to concentrate on doing one therapy at a time, so I can really be sure what each does. October 17, 2011: Began using F-6 and have started a new link documenting that experience including photos showing what is emerging from the skin. Caroline Carter, A healthcare worker that has Morgellons and works with ozone therapy (and who made her Morgellons worse with ozone saunas) said she cannot even be around it anymore. Ozone therapy is typically great for cancer, AIDS and herpes, but for this disease might make us worse. There seems to be improvement to the hair which feels stronger and seems to be falling out less. A lot of "debris" is coming up through the skin, fibers, black particles, granules and many more fibers then ever seen before.
This forage into complex carbs was unusual for me.While eating the cookies I started to itch. By the third cookie, I was having full-blown symptoms of itching, stinging and biting sensations (no crawling, thank God!). The fact that it came on with such force and was related to food, makes me think that Morgellons counts among it's causes a hyper-allergic reaction to food.
In this case, I don't really know what specific ingredient triggered the reaction.By eliminating carbs again, symptoms quieted down. I am noticing flare-ups of the arthritis in my foot which had so improved at the beginning of my treatment (but I kill my feet dancing one night a week, so that could play into this). The ones I can visually see without a scope are bigger then I've had before but there is no increase in the amount I generally see with my scope in the skin. Will keep you posted of new developments.I've noticed that when it's very hot (93-97 degrees) and my skin is exposed to the air, I have more sensations on my arms. It's not unusual to feel a single pin prick sensation on my left upper arm, often I'll feel the same type of prick mirrored in the same spot on right arm sometime later, as if they were somehow linked.The other day on my bike I felt as if I hot poker were being pressed momentarily to my arm.
When I looked down, there were three distinct tract marks in that spot, about a half, to an inch long that hadn't been there before. Since having Morgellons, it feels like the skin is no longer a reliable friend but is capable of erratic changes suddenly.
It's a bird's eye view into the system, giving a fuller, deeper understanding of what's going on  then just looking at lab results—although lab tests have their place! In the next two weeks I get more testing done so will post those results when in. There were many problems with the blood.
We are in a seasonal shift and my fingers have had a few tiny papercut lesions since the change began.Started the protocol Oct. The L-glutamine is supposed to strengthen the gut lining and prevent leaky gut syndrome caused by the yeast die-off. Will stay on this for a few days and slowly double the dosage, then determine where to go from there. 16, 2012 Went back to Rick Panson for another live blood analysis and posted the photos under my last blood microscopy.
Rick recommended Candex and Nancy told me she loved the product except now they are adding corn to Candex (and it's unknown if it's GMO corn), so she is no longer recommending it. Adrenal system had a number of markers indicating a lot of stress to the system, very low levels of vitamins C and B's, four different pathogenic bacteria showed up—Helicobacter Pylori was high, Clostridia, E. It's been 2 years since I started using supplements to pull the metals out and I think it will take a couple more years of work. The process is slow but steady which is a good thing because I think if the body released too much metal into the system at once there would be negative impact on the health. Nancy pointed out that lead and cadmium are antagonistic to calcium absorption and bone health, so seeing this rise in cadmium and knowing I still have too high levels of lead makes me think that I might have to give up the painting at some point or switch mediums rather than compromise bone health. The heavy metals test also measures "essential and other elements," (minerals) It seems as a consequence of pulling heavy metals out, the minerals have been compromised.
Nancy suggested this organism is a pleomorph moving from bacteria to fungus according to favorable conditions in the body. This is the third time it's changed. Feb 3, 2013 Just an acknowledgment that I just passed my 3rd anniversary since getting sick with Morgellons. Thieves is a great oil for preventing flu or when one is coming down with illness, but I am unclear if it can damage beneficial bacterias.
Stopped taking thieves after a few weeks but do still take lemon and added in lemongrass and grapefruit to my daily capsule. Itchiness did not return. September 22, 2013 Decided to go on Stephen Buhners herbal protocol for Lyme disease (crafted from his excellent book, Healing Lyme). Although I tested negative for Lyme and feel fine, I don't trust the traditional testing one gets with their regular MD, and even though I don't think I'm dealing with Lyme, I can't discount the fact that so many Morgellons sufferers also have Borrelia and other co-infections that might be related to our disease which seem to improve with Lyme treatment.
Certainly, I see over time that my immune system is weak, and my gut reaction now to coasting is that it could be an eventual time bomb. To his formula I've added in Ashwagandha and Sweet Cinnamon (from Sri Lanka) for the brain, as well as nettles (excellent herb for trace minerals and general support of system) and Pau D'arco (fungal).
I take a quarter level teaspoon of each herb (which is roughly the equivalent of one 00 capsule) added to some water and drink it down. Surprisingly, I did not feel exhausted, although the protocol was pretty intense and caused a lot of flushing through the digestive system. This is not a new symptom and usually happens in the first few weeks of starting any new protocol. In this case, the skin continued to break open for the duration of treatment and I had some long "scratch" marks come up as well. It seemed like the last papercut I got was deeper and for the first time I started to worry that perhaps I was giving myself a lesion problem that I might not be able to turn off. This little spot has bothered me on occasion on and off throughout the years of my Morgellons experience, but during the Buhner protocol, it itched almost constantly.
On the plus side, I could tell there was a lot of detoxification going on and all of those bitter herbs were really helpful for quelling sugar cravings. I believe I will revisit this protocol modified in the future, but for now, am taking a rest from it. Note that when I ceased treatment, the papercut and pinprick lesions stopped, although I recently had a three-inch long "scratch" appear on my leg weeks after stopping his treatment some weeks back. This was a surprise, since problems usually only show up on my hands and 3 inches is rather a statement!For the first time, the scratch resembled images I've seen for Bartonella. There is much about it that I think is helpful, and I encourage people to study these herbs supplements carefully and decide for themselves if they want to incorporate them. This is a very difficult protocol and for many who have detoxification pathway issues, this could impact their health very negatively.
The release of toxins in a system that cannot remove them properly can be deadly, so it is important to not rush carelessly forward with something this strong.
I did feel like the protocol helped me on many levels, but I could not tolerate the heart issues with pressure on the chest, burning, and breathing difficulties.
The creator of the protocol feels that Bartonella is at the core of the Morgellons infection, and Bartonella likes to set up shop in the endothelial tissue of the heart. Thinking this was just a severe Herxheimer reaction, I went back on the protocol but was unable to advance more than one drop of each tincture before heart issues returned with a vengeance. This time, the heart issues did not abate immediately, and it's been some weeks now in which they often come back on a low level. There is another person that was on the protocol with me and she has had continuing difficulties after getting off the protocol as well. Few people know this, but it's very important that word get out. The protocol as it is currently written, is not the same one the creator of this regimen used on himself to "cure" his Morgellons and Lyme.

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