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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. Alternative Rheumatoid Arthritis Treatments Rheumatoid arthritis (RA) is a chronic disease that affects the joints, often those in a person's wrists, fingers, and feet. Fish oil contains high amounts of two omega 3 fatty acids: EPA (eicosapentaenoic acid) and DHA (docosahexaenoic acid). Homeopathy is a whole medical system (examples of whole medical systems include traditional Chinese medicine, Ayurvedic medicine, homeopathy, and naturopathy) that was developed in Germany and brought to the United States in the 19th century. Mind-body techniques draw upon the interactions that exist in health and disease between the mind, the emotions, the body as a whole, and various body systems (such as the immune, nervous, and endocrine systems). Herpes is a sexually transmitted disease that affects around 16% of all Americans between 14 and 49 years of age.
The main complication from genital herpes is the recurrent painful outbreaks and the psychological stress of being infected. It is difficult to completely avoid transmission from an infected partner without abstinence.
This is important to minimize damage to the joints and bones, as well as disability. There are many proven conventional treatments for RA. RA can be hard to diagnose, there is no single test for it, and its symptoms can be similar to those of other conditions. Proven conventional treatments for RA should not be replaced with a Alternative Rheumatoid Arthritis Treatments that are unproven. GLA can be used by the body to make substances that reduce inflammation. Effectiveness and safety - Alternative Rheumatoid Arthritis Treatments - Gamma-Linolenic Acid (GLA) A 2000 Cochrane Collaboration review analyzed seven placebo-controlled studies of GLA (from evening primrose, borage, and black currant oils) for RA. As with GLA, the body can use omega-3s to make substances that reduce inflammation. Effectiveness and safety - Alternative Rheumatoid Arthritis Treatments - Fish Oil There is some encouraging evidence from a number of laboratory studies, animal studies, and clinical trials about the potential usefulness of fish oil or omega-3 supplementation for various aspects of RA--such as the number of tender joints, morning stiffness, and the need for NSAIDs. It can also be obtained from the shells of shrimp, lobster, and crabs, or made in the laboratory.
Examples of foods that are believed to possibly worsen the symptoms of arthritis (including RA) are the nightshade family of plants (white potatoes, tomatoes, eggplant, and peppers), dairy, citrus fruits, acidic foods, sweets, coffee, and animal protein. Homeopathy involves giving very small doses of substances called remedies that would produce the same or similar symptoms of illness in healthy people when given in larger doses. Some mind-body techniques are part of ancient healing traditions, others have emerged in recent times. It is caused by two viruses, herpes simplex viruses type I (HSV-1) and herpes simplex viruses type II (HSV-2). 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.
There are treatments for RA in conventional medicine, but some people also try complementary and alternative medicine (CAM).
It is important not to replace them with Alternative Rheumatoid Arthritis Treatments that are unproven. Many Alternative Rheumatoid Arthritis Treatments for arthritis are heavily advertised and make attractive claims, often based on personal stories (testimonials). The authors noted there were issues with these studies that made it difficult to draw conclusions. The body uses glucosamine to make and repair cartilage, a firm but flexible tissue that covers the ends of bones, keeps them from rubbing against each other, and absorbs the force of impact. Chondroitin is a substance found in the cartilage around joints. There are various theories about how foods may affect RA, including: The foods one eats and how the digestive system handles them are known to affect the immune system. Another term used for hydrotherapy baths is balneotherapy. Hydrotherapy dates back to ancient Greece and Rome.
This approach is called "like cures like." The remedies are diluted very highly, often to a point where not one molecule of the original substance remains. Examples of mind-body techniques include meditation, tai chi, relaxation techniques, and spirituality for health purposes. Effectiveness and Safety - Alternative Rheumatoid Arthritis Treatments - Selected Mind-Body Techniques Mind-body therapies have been applied to and studied for various types of pain.
Avoiding sex during outbreaks and using a condom reduces the risk of spreading the disease. This page answers some frequently asked questions on this topic and suggests sources for more information. CAM is a group of diverse medical and health care systems, practices, and products that are not presently considered to be part of conventional medicine. However, it is important to find out whether any high-quality scientific research has been done on a CAM therapy. None of the Alternative Rheumatoid Arthritis Treatments discussed in this site have been proven to be of benefit for RA. Supplements can interact with medications (whether prescription or over-the-counter) and can affect how the body responds to them.
However, they thought the better studies indicated potential relief for RA pain, morning stiffness, and joint tenderness. There are potential side effects and risks to know about with GLA.
Fish oil supplements interact with medicines for high blood pressure, so taking them together might lower a person's blood pressure too much. Certain species of fish can contain high levels of contaminants, such as mercury, from the environment.
As a supplement, it is obtained from sources such as sharks and cattle. Effectiveness and safety - Alternative Rheumatoid Arthritis Treatments - Glucosamine and Chondroitin Both glucosamine and chondroitin have shown anti-inflammatory effects in animal studies. These are of a type called static magnets, because their magnetic fields are unchanging. Effectiveness and Safety - Alternative Rheumatoid Arthritis Treatments - Magnets The research so far does not firmly support claims that static magnets are effective for treating pain, including pain from RA. Results from clinical trials indicate that mind-body therapies may be effective additions to the treatment and management of arthritis, including RA and its pain. One analysis of clinical trials on mind-body therapies for RA has been published. Some experts say that an adequate intake of antioxidants may even reduce the production of free radicals, which can help slow the progression of Rheumatoid Arthritis and may even reduce your Rheumatoid Arthritis symptoms and need for medication.Whole Food Supplements are an easy way to get nutrition from fruits, vegetables and whole grains without actually eating them.
If a woman has active herpes at the time of delivery a cesarean delivery is usually performed. Pharmacists can also be a helpful source of information about dietary supplements (though their advice is not a substitute for that of your provider). If you decide to use supplements, what you see on the label may not reflect what is in the bottle. First, these plant seed oils may affect certain medical conditions and interact with prescription medications. Thus, their oils could pose a health risk, especially for pregnant or nursing women and for children. A handful of small studies have been conducted, and the findings do not clearly answer this question.
In those cases where some benefit was seen, it has not been proven why; many scientists think it may be due to a placebo effect. Some forms of hydrotherapy are used in conventional medicine in the United States, such as whirlpool baths for athletic injuries and ice for sprains.
These authors, who evaluated 25 trials and published their findings in 2002 also concluded that mind-body approaches may be effective additions to RA treatment. Genital herpes has no symptoms most of the time, but periodically it causes painful blisters around the genital area. 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. For example, some botanical supplements have been found to be contaminated with heavy metals or prescription drugs, and some have been found to have much more or much less of the featured ingredient than their label states. Specifically: Some borage seed oil preparations contain ingredients called PAs (for pyrrolizidine alkaloids) that can harm the liver or worsen liver disease. The fish that the Federal Government has found to have the highest levels of mercury are shark, swordfish, king mackerel, and tilefish. Osteoarthritis is a different form of arthritis than RA, with different causes, although the symptoms are similar (such as joint pain and problems with function). Issues with the studies have included design problems, a small number of participants, variations in where acupuncture was given on the body, and how many treatments were given and for how long.
It appears from some studies that homeopathy might be more effective than a placebo for rheumatic diseases and syndromes (including RA), but this evidence is not strong. They noted that mind-body practices led to significant improvements in RA pain, disability, overall psychological state (psychological status), coping, and belief in one's own ability to handle situations (self-efficacy). People who decide to use fish oil should look for products made from fish with lower mercury levels. Government information on this topic is available.
One cannot assume that if a treatment is helpful for one type of arthritis, it will also be helpful for another type. The studies of glucosamine and chondroitin for osteoarthritis mostly found a modest benefit. More and better research is needed. Acupuncture tends to have minimal side effects, if any.
EMs are used in conventional medicine to treat bone fractures that have not healed well, and they are being studied in research settings for a number of other conditions (including cancer, epilepsy, RA, and mental disorders). It is used with the intent to benefit arthritis, circulation, and various other health issues, and to enhance feelings of relaxation and well-being. Larger, better-designed studies are needed to resolve this question. Homeopathic remedies are considered safe and unlikely to cause severe side effects. Always wary of doctors, I tried to stay out of that loop but finally caved when my beloved ones pressured me to seek help. Some practitioners of conventional medicine are also practitioners of Alternative Rheumatoid Arthritis Treatments. You may have to contact the manufacturer to find out the type(s) of fish used in a product. Some consumer products using EMs are available. Effectiveness and Safety - Alternative Rheumatoid Arthritis Treatments - Electromagnets EMs are being studied because there have been some encouraging early findings indicating the possibility of benefits for pain, physical function, and stiffness. The FDA has learned of a few reports of illness associated with the use of these remedies, but determined that the remedies were not likely to be the cause. A 2003 study at Johns Hopkins University of people with moderate RA found that those who had "spiritual transcendence" had more happiness, joy, and positive perceptions of their own health.
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 was regardless of how severe their RA was or how well they could function. There have been some small studies on tai chi for RA.
A person is more contagious during the period of blisters and sores, but the disease can sometimes be transmitted even when there are no signs or symptoms. This gave me great relief from the discomfort of what felt like fiberglass embedded in my skin. Food and Drug Administration (FDA) as a category of foods, supplements made from plants and used for medicinal purposes (sometimes referred to as herbal medicines) can have effects as powerful as those of drugs. Also, glucosamine might cause higher blood sugar and insulin levels in people with diabetes, and those who decide to use it need to carefully monitor their blood sugar. In fact, many conventional drugs first came from plants, such as digitalis (from the foxglove plant), used to treat heart failure and heart rhythm, and paclitaxel (from the yew tree), a cancer chemotherapy drug. It is important to be as informed as possible about the safety of any supplement you are considering or using. Glucosamine could possibly decrease the effectiveness of certain medications--acetaminophen, some anticancer drugs, and antidiabetes drugs. However, there have been quality issues noted with these studies, and it is not considered proven that the hydrotherapy itself provided the benefits for RA claimed in these studies. Larger and better studies are needed to answer this question. These studies on RA have had conflicting results; some found improvement in daily functioning and certain symptoms, others did not. There were NO fibers visible in my skin in the previous months before taking the medication.


Some information already exists from a long history of botanical use outside conventional medicine. Generally, side effects of glucosamine can include mild stomach problems and nausea; less commonly, there can be sleepiness, a skin reaction, or a headache.
Study authors have noted that there could be other reasons for any benefit, such as traveling to a spa, being removed from one's daily routine, relaxation, socializing, etc. The safety of hydrotherapy has not been well studied. NCCAM is co-sponsoring a clinical trial that compares tai chi chih (a type of tai chi) to relaxation therapy for symptoms of RA.
This knowledge is being strengthened as NCCAM supports rigorous studies on botanicals and other supplements that have shown promise in early studies to find out more about their molecular structure, their safety, how they may work, and for what diseases or conditions. Some people who are allergic to shellfish are concerned about an allergic reaction to glucosamine.
Overall, it appears to be a low-risk practice for most people if common-sense precautions are taken, such as not exposing the body to too much heat or cold or for too long a time, and being sure to drink enough fluid.
An earlier clinical trial by this team found tai chi chih improved physical functioning and immunity in healthy older adults. Other research as well has supported benefit from tai chi to older people on such outcomes as balance, postural stability, frailty, and prevention of falls.
However, most shellfish allergies are to proteins in the meat, not to the shell material from which glucosamine supplements are made. Chondroitin appears to be safe for most people. Within two days of taking the Ivermectin, I watched in horror as fibers started to rise to the surface of my skin.
However, chondroitin may possibly worsen asthma (through an allergic response), blood clotting disorders, and prostate cancer.
It is done slowly and at low impact to the body. In mind-body therapies, there are relatively few physical and emotional risks, if any. 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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