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Morgellons Disease Awareness -  Artist 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.
We will be provided with an authorization token (please note: passwords are not shared with us) and will sync your accounts for you. Body weight is determined by many factors including genetic, epigenetic, metabolic, and environmental components and under physiological conditions homeostatic behavioral adaptations protect against weight gain as well as weight loss (6). However, regulation of body weight seems to be more effective in response to weight loss than to weight gain (7). Homeostatic control of food intake and energy metabolism is assured by a network of several hypothalamic nuclei (Figure 1) [for review see Ref.
Both orexin and melanin-concentration hormone neurons are selectively lost in PD which is correlated with the clinical stage and severity of disease (14–16). This network assures a bidirectional homeostasis in response to peripheral signals reflecting the actual nutritional stage. Hunger and appetite may be induced by ghrelin, which is the only peripheral hunger signal thus far identified. The hypothalamic control of food intake is modulated by the dopaminergic system and both systems are modulated by homeostatic orexigenic and anorexigenic signals such as ghrelin and leptin (26, 27). Exposure to food and food-related cues results in an activation of the mesolimbic dopamine system and especially the projection from the ventral tegmental area to the nucleus accumbens [for review see Ref.
Other dopaminergic pathways are implicated in eating-related behaviors: in dopamine-deficient mice, restoration of dopamine in dorsal striatum rescues feeding in these animals that otherwise would die of starvation (26). On the other hand, too much dopamine signaling was shown to inhibit feeding in mice, demonstrated with non-specific dopamine receptor agonists, DAT inhibitors, or amphetamines which increase the synaptic dopamine via an inhibition of presynaptic dopamine reuptake (26).
Other aminergic systems such as serotonergic or noradrenergic systems are mutually connected with the hypothalamus and may influence homeostatic metabolic regulation. Serotonin plays a role in eating behavior and high cerebral levels may improve mood, depression, and sleep (48).
Gastrointestinal functions are regulated by the enteric nervous system, a neuronal network organized in two plexuses, myenteric and submucosal, which control gut motility and secretion (5). In PD, the enteral nervous system is affected by alpha-synucleinopathy which may explain the high incidence of gastrointestinal disorders, beginning in pre-motor stages of the disease.
Weight loss in PD has been reported since the first publication of James Parkinson in 1817. Taken into account that weight loss may take place before the onset of motor symptoms, other disease-related factors should be considered.
As described above, dopamine has anorectic effects in the hypothalamic arcuate nucleus leading to a suppression of appetite and food intake (28). In addition, dopaminergic treatment, especially apomorphine, may induce nausea and vomiting thus limiting energy intake, mainly on introduction of treatment (94).
In the pre-levodopa era, PD was a disease of malnutrition and even 20 years ago, it was rare to encounter obese PD patients (98) (Figure 3). Weight gain after pallidotomy for PD was first published in 1953 (128–130) (Table 2). Eastern Oregon rancher Dick Fleming wants to make the most of every precious drop of rain on his rangeland. By allowing his ranch to have regular, rotating rest periods, Fleming has minimized disturbance on the soil and promoted more plant cover and plant diversity.
The CREP project wasn’t completed when it was time to bring animals on in 2006, so Fleming only grazed half of the ranch, further reducing disturbance.
By allowing the ranch to have regular, rotating rest periods, Fleming has achieved another soil health principle: increasing cover. The goal in rangeland health is to capture, store and safely release all available moisture that comes to the water-limited rangelands. Over the years, Fleming has moved further away from traditional management, which uses an annual calendar and scheduled stocking rates, and he started letting the grass tell him when to move the animals.
Fleming has seen that by resting the ground every other year, his soil is accumulating more carbon, which has increased the size, health, vigor and diversity of plants.
Fleming notes there have been several challenges along the way, such as managing stock water and moving the animals regularly. Fleming is also starting to see the benefits of adaptive grazing management practices and how they complement wildlife. Last year, Fleming saw sage grouse juveniles on the ranch for the first time in his memory. Taking advantage of the NRCS’s Conservation Stewardship Program (CSP) allows Fleming to take wildlife habitat enhancement even further, including installing and maintaining wildlife friendly fencing, and rotating supplements to distribute cattle grazing to different parts of the pasture. Looking ahead, Fleming hopes to continue to not only improve productivity on the ranch, but also the value of what the ranch produces. This means that you will not need to remember your user name and password in the future and you will be able to login with the account you choose to sync, with the click of a button. This page doesn't support Internet Explorer 6, 7 and 8.Please upgrade your browser or activate Google Chrome Frame to improve your experience.
Weight loss has been reported in early stages as well as in advanced disease and malnutrition may worsen the clinical state of the patient.
The most prevalent symptoms in early disease are mainly due to progressive degeneration of the dopaminergic nigrostriatal and mesocorticolimbic pathways with motor (akinesia, rigidity, tremor) and non-motor (apathy, anxiety, depression) symptoms (2). Weight gain is the result of a positive energy balance, which means that energy intake exceeds expenditure, resulting in accumulation of fat. These neurons produce numerous anorexigenic peptides, such as α-melanocyte-stimulating hormone, derived from a common precursor, called pro-opiomelanocortin (POMC). Ghrelin is a peptide synthesized and liberated from the gastric mucosa in fasting state (10). Dopamine and the dopamine D2 receptor play a central role in motivated behavior including feeding behavior (28, 29). It seems that a regulated dopamine release in dorsal striatum is essential for normal feeding in mice (33) and humans (34). In healthy adults, the amphetamine and DAT inhibitor methylphenidate reduces eating and food intake by one-third (38, 39) and weight loss was shown in PD patients treated with methylphenidate (40). Thus, as feeding does not require any effort and highly palatable food is easily available, snacking can be maintained even in apathetic patients who lost motivation for any other physical activity. Cerebral serotonin biosynthesis is favored by its precursor, the essential amino acid tryptophan in the presence of dietary carbohydrates.
The most frequent symptom is chronic constipation affecting up to 89% of PD patients [for review see Ref.
On the other hand, large Finnish and Japanese cohort studies reported a weight gain in pre-diagnostic PD (58, 59). As described above, several disorders of the hypothalamic regulation are known in PD, namely a massive loss of hypothalamic orexin-producing neurons, occurring prior to the onset of drug treatment (15, 16, 91).
This could be due to impaired gastric mobility and contribute to weight loss in all stages of the disease [for review see Ref.
Likewise, substances which increase the synaptic dopamine by inhibition of the presynaptic dopamine transporter like amphetamine have anorectic effects (38). However, in the long-term, the treatment is mostly tolerated and may induce dyskinesia and behavioral side effects including physical hyperactivity both leading to increased EE. Medical conditions such as infection, bone fractures, and malignant diseases may be other factors (99). Since then many authors reported increased body weight after surgery for PD, mostly STN-DBS (131, 132), but also stimulation of GPi (107, 133–135).
His 3,305-acre ranch in Baker County gets only seven inches of rain a year on average, and has a limited growing season of six weeks. By adapting his grazing plans and investing in the health of his soil, Fleming is minimizing disturbance and increasing plant diversity -- which translates to better soil infiltration and more forage production.
He enrolled in the USDA Farm Service Agency’s Conservation Reserve Enhancement Program (CREP) in 2005, which assisted him with fencing off the streams and reducing disturbance in these critical areas.
By strategically adjusting his grazing management, his rangeland has developed bigger, more productive plants with an increase in plant structure and complexity.
Now we have very little runoff -- all the runoff we see is along the roads,” Fleming said.
He works with the USDA Natural Resources Conservation Service to employ adaptive grazing management principles across his ranch. Also, he said it requires more time to pay close attention to what’s going on across the ranch and to monitor soil conditions. He’s also using CSP to implement non-chemical techniques to control undesirable weed species and manage livestock access to water to help protect and restore these critical areas.
I've been moved to create awareness tools that help 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.
On the other hand, an increasing number of patients show weight gain under dopamine replacement therapy or after surgery. The disease is also characterized by the presence of non-motor vegetative symptoms explained by a synucleinopathy of central and peripheral vegetative system (3) and in its advanced stages by dementia, which correlates with cortical deposits of alpha-synuclein (intracellular Lewy bodies and Lewy neurites) (4).
Although this equation seems rather simple maintaining a constant body weight is a complex physiological process comprising internal and external, homeostatic and hedonic, and neurological and metabolic factors. Together with their receptor, these peptides constitute the melanocortin system which plays an important role in energy homeostasis.
In addition to actions in the hypothalamus, ghrelin stimulates appetite via receptors located in mesolimbic circuits (9). However, the role of the dopaminergic system in feeding behavior is very complex and not completely understood. This led to the hypothesis that the mesolimbic dopamine system mediated pleasure associated with eating [for review see Ref.
Accordingly, increasing the synaptic dopamine by inhibition of the DA transporter or administration of amphetamine increase the motivation for high effort activities [for review see Ref.
The dopamine release in the dorsal striatum following feeding correlated with the experienced pleasure in healthy humans (35). In hypothalamic pathways, dopamine inhibits feeding (28), and a tonic inhibition of orexin-producing neurons in the lateral hypothalamus by dopaminergic hotspots in the nucleus accumbens has been described [for review see Ref. The noradrenergic locus coeruleus (LC) as well as serotonergic neurons express high amounts of orexin receptor and dense orexin fiber projections (44). This mechanism is triggered via the insulin response which enhances cerebral uptake of tryptophan (49). The same result was found in the Honolulu Heart Program which included Americans of Japanese origin (60). An association of dietary milk protein with PD-risk is established for large prospective US cohorts (72), but a case–control study in Japan could not confirm this association (73). Average weight loss is about 3.6 kg 8 years after diagnosis (54) or 6 kg in one decade (76).
Indeed, metabolic studies had shown that resting EE is increased in PD (about 20–51% of control subjects) in ON and OFF-medication state. Mechanisms of body weight loss in Parkinson’s disease according to the stage of the disease. As orexin is involved both in appetite and spontaneous physical activity (92), its decrease may contribute to a decrease in food intake and physical activity. Levodopa is an amino acid and its intestinal absorption and cerebral uptake competes with dietary amino acids thus may be impaired by dietary protein.
In fact, prevalence of overweight in PD was reported to be about 60% in Italy (105) and 50% in Germany (80). Eating disorders were described in up to 15% of patients treated with dopamine agonist leading to weight gain and sometimes to obesity (110–120).
It’s most definitely a challenge for Fleming -- and other Eastern Oregon ranchers -- to maintain moisture for forage production.
Minimizing disturbance is one of the four principles of soil health that is important for rangeland health.
Also, he has seen a return and rebounding of important shrubs and forbs on his land, with more resistance to weed pressure and reduced erosion. NRCS staff provide technical assistance to help Fleming track key species in the pasture to manage his ranch for healthier soil. Over time, he’s seen increased diversity of plants, with more forb species coming in such as yarrow, mariposa lily, and phlox.
Rest cycles and adaptive management allow range plants to achieve their full size, providing the kind of habitat structure that juvenile sage grouse require. These weight changes are multifactorial and involve changes in energy expenditure, perturbation of homeostatic control, and eating behavior modulated by dopaminergic treatment. On top of the dopaminergic system, serotonergic, noradrenergic, and cholinergic nuclei in the brainstem projecting to the cortex are also impaired by the diffuse synucleinopathy which starts in the lower brainstem.
This figure represents the main mechanisms, which are disturbed in PD (hatched areas) and may affect eating behavior.
Orexin increases appetite, arousal, and spontaneous physical activity and therefore plays an important role in energy balance. Interactions of this system with dopamine neurons in the nucleus accumbens are described (11).
Serum levels of leptin reflect the degree of adipose tissue and high levels reduce food intake.
It seems to exert different actions in separate circuits and in the pattern of release (phasic versus chronic release) (26, 30).

Obese people have low striatal dopamine D2 receptor availability (36), and low dorsal striatal presynaptic dopamine synthesis capacity was correlated with overeating behavior in a PET study with healthy volunteers (37). The primary cause for constipation is impaired peristalsis with slow colonic transit due to neurodegeneration of myenteric neurons, which may be modulated by dopamine (52). No association between PD and BMI before or at disease onset was reported for the Greece EPIC population (61), the UK-based general Practice Research Database (62), and in Italian case–control studies (63, 64). As dietary patterns are very different between Asian and western populations, these findings might reflect cultural variations of eating behavior in pre-motor PD. Both fat mass and lean body mass were reported to be reduced in PD patients who lost weight (18, 77). Weight loss could be promoted by impaired bioenergetics due to mitochondrial dysfunction, as shown in a mouse model of PD. Furthermore, evidence from studies with rodents indicate that hypothalamic leptin signaling (which acts as a satiety signal) might be enhanced in PD (20).
Both agonist and DBS treatment may lead to modifications of eating behavior leading to increased food intake. Nocturnal eating is frequent and related to sleep disorders in patients treated with agonists (121). NRCS provides financial assistance to implement these practices under its Wildlife Habitat Incentives Program. Plant diversity is another soil health principle that is coming to fruition on his rangeland. Comprehension of the different mechanisms contributing to body weight is a prerequisite for the management of body weight and nutritional state of an individual PD patient. Typically, the first alpha-synuclein deposits are found in the vagal nerve with a gastroparesis and constipation starting before the first motor symptoms and leading the patients to consult before a diagnosis of PD can be made (5). Another central satiety signal is cocaine-and-amphetamine-regulated transcript (CART) which was also shown to interact with hedonic circuits and dopamine (11). A reduced postprandial ghrelin response was shown in early stages of PD (21) which is not modified by dopamine treatment or acute STN-stimulation (22, 23). This motivation can be measured in laboratory animals with running activity or lever pressing in order to acquire foodstuff.
However, in PD treatment with dopamine agonists may induce in some cases compulsive eating behavior leading to weight gain (41). In the 6-OHDA rat model, degeneration of LC produces a transient drop in body weight which could be reversed by DBS-STN (46). The positive effect of carbohydrates, especially those with high glycemic index such as sucrose, on mood could be the reason why efforts to lose weight are doomed to failure in obesity (49) which is often associated with depression (50). In some patients, constipation is secondary to abnormal coordination of the rectoanal reflex with paradoxical contraction of the puborectalis muscle, which leads to defecatory dysfunction (5, 52). As degeneration of the dopaminergic system begins years before diagnosis (65), BMI variation may reflect a dysregulation of dopaminergic control of eating behavior rather than modification of energy metabolism in pre-motor stages of the disease.
A recent meta-analysis found significant negative associations with PD for smoking, coffee drinking, and alcohol consumption which may represent a modification of preferences in early PD (74). It should be outlined that a lower average BMI does not mean that many PD patients are at risk for malnutrition. Consequently, when patients with severe dyskinesia were excluded, resting EE was not increased (87–89). In this model, which has a loss-of-function mutation of the mitochondrial protein kinase (PINK1) causing a genetic form of PD, significant weight reduction occurred in pre-motor stage (93).
These data are close to the prevalence of overweight and obesity in the general population in western countries which is between 50 and 70% (109). In addition, with successful DBS treatment, energy expenditure decreases by improvement of symptoms leading to body weight gain even in the absence of eating disorders. 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. This review summarizes the present knowledge and highlights the necessity of evaluation of body weight and related factors, as eating behavior, energy intake, and expenditure in PD. According to the clinical stage, body weight of a given patient may considerably change during the course of the disease raising the risk for both disease-related under-nutrition and treatment-related overweight. Orexins are thought to provide a link between energy balance, behavioral arousal, and reward (10, 12) and play a role in thermogenesis (13). In mice lacking D2 receptors, an enhanced hypothalamic leptin signaling has been shown (20) arguing for an alteration of this mechanism in PD which could explain weight loss in spite of low leptin levels. In line with these results, dopamine-deficient mice still demonstrate a marked preference for sucrose over water (31). Lack of mesolimbic dopamine reduces the activity of rodents to acquire foodstuff, for example running activity or working to get access to food (26, 28, 32). This had led to the hypothesis that weight variations in PD could be modulated by noradrenergic interaction between LC, STN, and hypothalamus (47).
Neurodegeneration of the serotonergic system with low levels of serotonin in PD (48) may explain the pronounced preference for all kind of sweets and increased intake of chocolate in PD patients (51). Loss of serotonergic neurons in raphe nucleus is thought to be involved in this clinical feature (52). Apathy, depression, and anxiety are frequent in de novo PD (66, Bichon et al., personal communication) and eating disorders may also appear in response to these negative emotional state.
In spite of a decline of body weight, during disease progression patients may be overweight (see later). Dyskinesia and rigidity as well as tremor may be considered as spontaneous physical activity, like standing or fidgeting. We can state that modern pharmacotherapy together with overall increase in overweight in modern society seems to have changed the phenotype of the PD patients.
Today, a large number of central signals are identified and the list is still growing [for review see Ref.
Six months after STN-stimulation, ghrelin was shown to increase (25) which is coherent with the concomitant weight gain (see later). On the other hand, when palatable food is abundant and may be acquired without effort, food intake of dopamine-deficient rodents remains stable or even increases (32).
The underlying mechanism is thought to be an activation of mesolimbic dopaminergic pathways, especially in ventral striatum and nucleus accumbens, mediated by D3 receptors (42). Gastroparesis is characterized by slowed emptying of food into the small bowel leading to postprandial fullness, early satiety, nausea, vomiting, and bloating (53). Some authors reported a link of PD with impaired glucose homeostasis (101, 102) but presently there is no clear evidence in this context [for review see Ref. Always wary of doctors, I tried to stay out of that loop but finally caved when my beloved ones pressured me to seek help. Gastrointestinal disorders affect the quality of life and may limit food intake thus contributing to mal- and under-nutrition in PD (24). Alterations of eating behavior have been described in de novo PD, prior to treatment (Bichon et al., personal communication). 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.
I believe my first words to her were, "Where do I sign the dotted line?" (While focusonhealth has been taken down, here is another radio show with Nancy speaking with Pam. 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. I used supplements for one month that gently cleansed the colon (Colon Cleanse by DaVinci Labs??). 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. Having gone through the early treatment phases and emerging symptom-free, makes me feel that I did indeed work through something—hopefully clearing biofilm. So where am I right now and what are the changes that happened over these few months of treatment?My skin cleared of many of black particles, although I still have them (my great lament was that I didn't have a camera back when I first got sick, because my skin was so saturated it was alarming!). 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. But it has also left me savoring hard-won battles and set me straight on how to live more in balance. 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. Yes it has been a miserable teacher, but by it's hand I have been become an attentive student.I wish you all full recovery. 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). FOS, according to Nancy can promote yeast growth so I'd stay away from a probiotic that includes it. I'd include a biofilm buster which breaks down the cellular matrix in the gut that inhibits absorption of necessary nutrients.
I used Interfase Plus and Wobenzym at different times (there are different kinds of Wobenzyme.
I've used Carlson's liquid D3 which is lipid based, but recently have switched because of assimilation issues with fats to a dry encapsulated D3 (Prothera brand 5,000 I.Us a day).
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, they went away.
I might mention, that my protocol has always called for 1000 mg of vitamin C, three times a day. While I was not on NAC as a separate supplement, it is in another product I take daily ?(Liver Protect by Xymogen).
Nancy has stated that the clients she sees that do this first make themselves much worse and take longer to get better. If I am going to do this right, I want to know what my baseline toxic load is so I can measure my progress over time. 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 keep an ongoing visual journal using photos which I share with her so she can see any new developments. During chelation I was more tired, needing to take naps and sleep longer on most days.
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. Using shea butter and coconut oil mixture as a moisturizer seems to draw fibers and black particles from my skin if left on for 3-4 hours. 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.
This is probably why my hair feels thicker even though it has been brittle, weak and falling out. 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.
Nancy feels that this is something that could have morphed, or, could have been present all along, but like peeling an onion back, was hidden under layers. She is adding seven new supplements to my protocol to address adrenal support as sleep has become fitful and I feel somehow too 'plugged in.' Fight or flight mode. 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.
Not terrible full-blown itchy, just enough to let me know that I was reinfected or maybe this is an allergic flare-up.
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. Was not constantly itchy, but found I'd get itchy at odd intervals, sometimes once a day, sometimes not for days at a time and sometimes for a mere few seconds or so.
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).
Now, instead of direct application of GSE I brush my teeth twice, once with toothpaste and once with a clean brush that has two drops of GSE on it. 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.
I still have 1.5 bottles left and intend to take it in a few months feeling I didn't give it a proper shot. 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. I'm going to take it slow with this product as I don't want to have any major herxheimer episodes. 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.
I have since talked with another person that had strong outbreaks from doing an ozone sauna. 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. A week and a half later I ate some quinoa with my lunch and two hours later had 3 oatmeal cookies (oatmeal, walnuts, carob chips, baking soda, vanilla). 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. They took about 5 days to disappear.?September 27, 2012 • Live blood microscopyJust posted a new link with photos of my recent session with Rick Panson, a microbiologist and healthy body coach who did a live blood and dried blood microscopy and gave me additional guidance for my health. 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.
Beginning with one pill a day of capyrilic acid with one pill olive leaf extract and 1 tsp. 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. This is encouraging for all of you who wonder how long it will take to knock back candida and even if our protocols are working. 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.
Kreb cycle needs support. Heavy metals hair test—all toxic metals were down except arsenic which went up with cadmium. Lead which was extremely high on my first test showed a considerable decrease as well as silver but lots more chelation ahead. 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. The only time I really have symptoms is when I really mess up on diet (itchiness will start) or when ?very overheated and sweating from physical exertion like dancing, where it sometimes feels like needle pinpricks are sticking my skin from the INSIDE out, accompanied by itchiness.
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. Also, his protocol addresses other issues I feel are pertinent to my health (even before Morgellons). 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. I'm taking Cats Claw, Sarsaparilla root (Jamaican—which I grind in my coffee grinder), Eleuthero (Siberian Ginseng), Astragalus, Japanese Knotweed and Andrographis.
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. As these breakouts have always been so minor and short-lived? (an occasional papercut lesion or what looks like a pin prick), I paid them little mind. 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 and supplements carefully, and decide for themselves if they want to incorporate them. This is a very difficult protocol and for any who have detoxification pathway issues, this could impact their health 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 and breathing 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. His original protocol (which he posted on Jenna's blog and which is now removed) did not use MSM, or Silver Sol or various other supplements. It also did not include baking soda, which is not inherently a problem, but at 2 teaspoons a day, might become one.

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