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. Always wary of doctors, I tried to stay out of that loop but finally caved when my beloved ones pressured me to seek help. 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 Early on, I'd heard about the testing that Pam Crane of Morgellons Focus On Health (site no longer active) was championing and felt that it was probably the way to go.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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