Artist and Morgellons sufferer, Ayla, journals her experience with the disease
I'd like to introduce myself, I'm Ayla, a 60
year old artist and graphic designer who contracted Morgellons in Jan. 2010. I've been moved to create awareness tools that help educate healthcare practitioners and the public about Morgellons Disease, as well as share what I've learned from this experience.
Many of the skin photos in the photo galleries are mine. This is a journal of my experience.
I've been ill since January 2010. 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.
I self-styled a protocol and was biding my time until I could figure out what my next step should be. 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. It was during the herx that the first fibers began showing up. There were NO fibers visible in my skin in the previous months before taking the medication.
I staunchly felt, even before seeing fibers that I had Morgellons as my symptoms fit the profile exactly (crawling movement in my eyelids, eyebrows as well as the rest of the body, a drop in core body temperature with stinging, biting and sensations all over the body—plus my skin was heavily burdened with what looked like black and brown particles. Everywhere I placed my hand-held microscope the skin was visibly impacted with them. Within two days of taking the Ivermectin, I watched in horror as fibers started to rise to the surface of my skin. This confirmed my belief that I was dealing with Morgellons disease.
Thus began the task of learning how to balance my pH (acid/alkaline ratio). 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. How would they work with me, were they holistically oriented or pharmaceutically oriented? 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). Unwilling to plunk my money down only to realize five minutes into a consultation that this doctor would not be someone I wanted to work with, I sat on my hands and waited.
All that changed for me when I heard Nancy Guberti a certified holistic nutritionist speak on MorgellonsFocusOnHealth.com (http://www.blogtalkradio.com/pamcrane/2011/02/22/nutritional-testingwhat-is-it-gi-effects-dna-test-what-it-is)
). 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.
Testing revealed a host of problems. I had two elevated bacterias, one being Hippauric acid which is associated with toulene, stressed adrenals, impaired Krebs cycle, malabsorption of carbohydrates, pancreatic insufficiency, issues with ATP (production of energy), deficiency in folic acid, acetyl l-carnitine, Vitamin C, B12, B6, glutathione, Vitamin E, oxidative stress and candida.
Nancy created a custom personalized protocol for me based on my test results and I made dietary changes to remove all carbohydrates/gluten and sugar.
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 healing process has been steady and gentle and well predictable. She has guided me and anticipated the various ups and downs on my road to recovery. 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!). Sleep improved early on. My digestion, which was a mess pretty much for 20 years, has completely cleared up. It appears that the inability to digest carbohydrates was the culprit. Food is being fully digested. No more problems with diarrhea. The arthritis in my feet, that was fast making me a cripple, is now a back-burner issue. I still have it in one foot, but it is minimized. I can now walk 3+ miles again. Energy is great. I have a renewed sense of health. 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. I still have fibers although they seem greatly reduced. Many are very tiny and stunted. 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. These tests are like a roadmap in a foreign country. 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. The one that frustrated me, and demanded too much at every turn. The one that was contrary and mean and who pushed too hard. 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.
While 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).
If you do not have specialized testing then I would buy a brand that has as many strains of live cultures as you can find. FOS, according to Nancy can promote yeast growth so I'd stay away from a probiotic that includes it.
Keep in mind that certain foods such as homemade sauerkraut and kefir are loaded with natural probiotics, so if you can't afford store bought supplements, sauerkraut is simple and inexpensive to make. Youtube.com has great videos that teach you how.
Digestive enzymes with each meal, (I have used Digenzyme and Vitalzymes) Vitamin C, 2-3 times a day (Twinlabs Allergy-C is made from sago palm and Vitamin C-1000 from Biological Formulas, made from tapioca are the only C that I know of that are not extracted from corn (a potential source of GMO). 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 am not familiar with their differences. I take Wobenzym PS as indicated by Nancy). A good D3 supplement. 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). Keep in mind that the vitamin D levels that are the current standard used in western testing show "normal" 25-hydroxyvitamin D lab range as between 20-56 ng/ml. However, alternative practitioners such as Dr. Mercola are saying that these levels are indicative of deficiency. The OPTIMAL value, according to him is 50-70 ng/ml.
I have my suspicions that Morgellons sufferers might be compromised with B vitamins (and my own testing bears this out). 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. She did mention that the cessation of symptoms was gradual. 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). I can't remember if the NAC was in my original protocol though.
This would be the LEAST I would start with and build from there.
Beware of starting chelation therapies at the beginning of your journey. Nancy has stated that the clients she sees that do this first make themselves much worse and take longer to get better. One needs to prepare the body for the chelation phase. For those unable to afford treatment and are self-styling their treatment, I'd recommend looking at Wolfe's site http://MorgellonsAid.wordpress.com he's got a list of cleanses you can do (in the proper order)—and he did Morgellons with little money. One needs to build up to chelation.
Update: October 29, 2010
I went through two weeks of chelation using Chelex supplements, a week off then a few more days on. I decided at this juncture to take the heavy metals hair test from Great Plains. 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. Lead was extremely high. I have a host of other metals as well, they just were at lower levels than those mentioned above. Zinc was low and my calcium/magnesium levels are totally out of whack with calcium being low and magnesium high.
I can see the chelation phase is going to be a challenge for me. 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.
From the beginning of my treatment process months back, I've been in touch with Nancy via email but especially during chelation I ramped up the contact with frequent updates so she could understand what was going on. 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. Once here, they don't go away.
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. I'm going to chelate only 3 days at a time starting later this week at a dosage reduced by half, then go off those supplements for 4 days...then back on.
Below: Photos taken during the early stages of chelation and are believed to be a
die-off reaction. 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.
Update: March 1, 2011
I'm doing well. Itching is completely gone.
I've been chelating now for 4 months. I'm doing it VERY gently. If I push it too hard, I get lesions. They are very tiny and mostly appear on my hands. Most are not readily apparent unless you really look for them.
Hair The Morgellons has moved into my hair. I started noticing fibers in the scalp area a few months back. An acupuncturist, pointed out after looking at my hair photos, that there were multiple "hairs" emerging from one follicle. There is only supposed to be one hair per follicle. This is probably why my hair feels thicker even though it has been brittle, weak and falling out. See photo documentation of hair damage.
Retested I was recently retested with Metametrix. There has been great improvement in 6 months. All 'bad' bacteria have been reduced. 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. All the beneficial bacteria's have higher levels now.
Carbohydrate malabsorption issues are resolved. In the next few months I will re-integrate some grains into my diet.
Absorption of supplements has improved and Nancy tells me this indicates that the biofilm has been reduced. 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. My protocols are all based on what is happening specific to my system. Randomly throwing supplements at the body without being tested, with the hope that something might work, seems a dangerous practice. I encourage those that can afford to be tested to do so.
April 8, 2011: Reinfection Last week I was in contact with a dog that has Morgellons (petting it for 10 minutes). Her hair was coming away in my hand. I took some of it home and looked at it under the scope. It was filled with fibers. Since seeing her, I have been itchy again. 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. It has been one week since exposure and the itchiness is lessening.
June 1, 2011: The reinfection stage lasted longer than I expected holding on for about a month. 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.
At this juncture in time I'm not itchy. 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).
October 4, 2011: Jaw issues have arrived. There is a dull pain at the hinge of the jaw when I open my mouth fully. My concern is that the Morgs. is doing it's dirty work under the gumline and may be affecting my teeth. This pain has been going on over a month.
I rubbed GSE on the gums one night (undiluted) in the spots where I felt the trouble was and woke up with a burnt mouth. Oy! Apparently GSE is a little too strong for sensitive tissues. Interestingly enough, after five days (when the burns went away) my jaw felt much better. 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. I do not rinse after the second brushing. I finish off by rubbing bentonite clay into the gums. For all those that may not know that the Morgs. affect the gums, it's important to be extra vigilant with the teeth. Flossing is extremely important.
Saw the dentist and he thinks it's TMJ. (I'm revisiting this earlier post. It is currently June 26, 2012). Whatever was bothering my jaw is gone. Once pain subsided there were no more issues.
Oct. 28, 2011: I've just returned from a week in the Bahamas. In the month previous to going on vacation, I'd occasionally become itchy. Again, sometimes only for a few seconds, sometimes on and off for a day. Note that I have been letting my supplements run out in the last few months because I needed a break from taking approx. 25 different things (33 pills) a day. I wonder if the return to itchiness had something to do with my letting down my guard and not watching my pH. I admit to be tired of being on such a strict regimen.
When I was in Bimini BA, I swam many times a day in the crystalline waters. 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. About four tiny pinprick breaks in the skin opened along the top of the shin bone. After that though, I had no other mishaps and had no itching at all for the week away. Returning home, I no longer have any itchy episodes and it's been over a week. I think swimming in the salt water really does a lot of good.
Just placed a new order for supplements again, so my slacking days are over for awhile.
P.S. I FINALLY have a microscope again (it was replaced after more than 7 months at the manufacturer!). I'm happy to report that my skin looks good. I see some fibers, but not more than usual. I'll once again be posting any interesting photos.
Oct. 1, 2011 Ormus white light Someone sent me two bottles of Ormus. This is a product I was unfamiliar with and initially skeptical of. I've been wanting to up the ante on treatment so took it for close to three weeks. One tablespoon a day. I had a few breakthrough 'papercut lesions' on the hands which I don't know what to make of. I believe it might have been causing a herx. 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. Check in on the F-6 link for more details about the treatment.
Dec 19, 2011: I bought an ozone generator and was experimenting with Ozone therapy as a possible treatment for Morgellons. I wrote some about it on this page but have since removed that journal post. 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. She told me to beware that it encourages Morgellons growth as well as cause outbreaks. 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. Ultimately, I'd like to set up a petri dish experiment to see for myself if the ozone really activates the disease.
Update on F-6: Fast approaching the 2 month anniversary of using F-6. There seems to be improvement to the hair which feels stronger and seems to be falling out less. Follicles look less damaged. A lot of "debris" is coming up through the skin, fibers, black particles, granules and many more fibers then ever seen before. Again, hoping this is part of the herx. as Gordon Stamp assures me it is. I'm applying it fully to the body once a day (except weekends). Skin on hands initially was spontaneously breaking open more. As of Feb. 8, 2012, the pinprick lesions that were coming up due to treatment have gone away.
April 12, 2012: Itchy!
In general I've pretty much have elimated carbs (breads, pasta, grains) from my diet. Two weeks ago I strayed, eating a bagel. Began to get itchy. 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. It took a good two weeks for itching to totally disappear. At the time of the flare-up I had little skin issues that popped up. A few tiny lesions on elbow and a couple of red bumps on body. Those went away quickly and I'm once again symptom-free. No itching, no skin problems whatsoever. This flare-up of symptoms was caused by breach in diet and by being so severe and lasting so long, shows how diet may play a big role in this illness.
Update July 26, 2012: Health is good. No itching/biting/crawling. 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). Also more cramping issues in the feet. Am seeing brown particles coming from the skin. It is very hot right now and I'm sweating more. That is when I see particles ocassionally come to the surface of the skin. 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. Energy is great, sleep is great. Will keep you posted of new developments.
I've noticed that when it's very hot (93-97 degrees) and my skin is exposed to the air, I have more sensations on my arms. It's not unusual to feel a single pin prick sensation on my left upper arm, often I'll feel the same type of prick mirrored in the same spot on right arm sometime later, as if they were somehow linked.
The other day on my bike I felt as if I hot poker were being pressed momentarily to my arm. When I looked down, there were three distinct tract marks in that spot, about a half, to an inch long that hadn't been there before. Since having Morgellons, it feels like the skin is no longer a reliable friend but is capable of erratic changes suddenly. It's a betrayal of the body. I can only imagine what those with serious lesions must feel like.
Above: This is what the tracks that appeared looked like. They took about 5 days to disappear.
September 27, 2012 • Live blood microscopy
Just 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. I'd encourage the community to have this done if the opportunity presents itself. 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. Yeast, dying red blood cells, clotting of RBC due to dehydration, bacteria and fibrin netting (advanced form of bacteria), Rouleaux or sticky blood platelets clustering in chains and a lot of dead red blood cells known as 'ghost' cells.The big finding was an 'unknown artifact' in the blood that to me clearly seemed to be a fiber.
As far as my health goes, I feel okay. More tired then usual, sleep is difficult to maintain. I have no illusions about my health getting better. The particles I see in my sheets seem to be larger in some cases. We are in a seasonal shift and my fingers have had a few tiny papercut lesions since the change began.
Started the protocol Oct. 4, for killing yeast that Rick recommended. Beginning with one pill a day of capyrilic acid with one pill olive leaf extract and 1 tsp. glutamine powder. 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.
Nov. 16, 2012 Went back to Rick Panson for another live blood analysis and posted the photos under my last blood microscopy. There has been a big improvement knocking back yeast overgrowth. The protocol I was on from Oct. 4-Nov.16 worked really well. 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. The supplements were supported by an anti-candida diet.
Besides that, blood is fuller, healthier looking, no ghost cells, well hydrated. Bacteria is still an issue. I've switched products for yeast reduction to CDX. 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. Once again there were two fibers on the slide.
Dec 10, 2012 RETESTED Sept. 2012 Results of DNA stool, organic acids (urine) and heavy metals hair test are back. 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. Coli, Campylobacter sp., fungus taxonomy unknown, yeast/candida overgrowth. Beneficial bacterias were lower then on previous test. 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. To all those chelating, know that this is a slow process. 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.
I'm attributing the rise in cadmium to my exposure to cadmium oil paints used in the 'Awareness' paintings. 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. I'm now on a multi-mineral supplement.
What Nancy seemed most concerned about was the high markers showing a stressed adrenal system, as these will affect mood (which they have as I have been dealing with some depression). She recommended taking L-Theanine in addition to the GABA already in my protocol.
One thing we discussed was the reappearance of one of the bad bacterias that had shown up on my first rounds of tests, disappeared on my second only to reappear on my third. Nancy suggested this organism is a pleomorph moving from bacteria to fungus according to favorable conditions in the body. The protocol has once again shifted. 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. Still going strong taking loads of supplements and watching diet. 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. Cooling down stops the symptoms immediately. Fiber production has increased in general. I feel this might be from slipping with alkalinity. The fibers in my skin are not visible to the naked eye. So from the outside, I look totally healthy and feel really good, but I know I am not "cured." For now—I'll take it, and still forge ahead trying new approaches.
May 2013 I've started experimenting with essential oils and was taking Thieves oil, (1-3 drops) and lemon oil (2-3 drops) for a few weeks internally in gel caps that I add the oils to (as well as ravensara which is not for the Morgellons and which I have concerns about taking internally, so am not recommending). All itchiness upon exertion has gone. 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. I try and take it away from probiotics. 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).
I still very much want to hit the Morgellons in new ways and perhaps I've been resting on my laurels just by taking supplements all this time. 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 just won't be satisfied until I no longer see fibers in my skin.
My bulk herbs come from mountainroseherbs.com which cuts down the cost immeasurably, over buying pills. 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. I'll be edging up my dosage slowly. I still continue to take my daily supplements.
Update Feb 3, 2014: I was on the Buhner protocol for two months and slowly worked my way up from the equivalent of one capsule of each of the ingredients once a day, to three capsules of each ingredient, 3x's a day before I stopped completely.
I experienced some herxheimer reactions, such as hot flashes for the first two weeks, and low-level headaches at the front of the head throughout treatment and some dizziness (which I'm not sure was caused by the herbs, as I have inner ear issues on and off). Surprisingly, I did not feel exhausted, although the protocol was pretty intense and caused a lot of flushing through the digestive system.
What caused me to stop was that my skin started being reactive and breaking open. 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.
In hindsight, I wonder if I just shouldn't have reduced the amount of herbs and soldiered through the skin reactions. Clearly, it was shaking up my system. Also, I had a tiny patch of skin on the abdomen that itched. 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.
Another drawback of the treatment was taking the raw powdered herbs in a glass of water (others have taken the time to encapsulate the powders). This was like drinking a cup of mud, sand and twigs three times a day. 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. For the time being I am on a new protocol using the synergy of herbal tinctures. I've been on it for 3 months. I will write about it at a later point in treatment.
Oct 21, 2014: after seven months of treatment, I am off the Synergy protocol (which is now called the NB protocol). 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. He felt my reactions were due to die off. I do not necessarily believe that is the case. The heart issues escalated to the point where I checked myself into the emergency room. The symptoms subsided after three days off the protocol. 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. My body completely rejected being on the protocol and I had to stop. This time, the heart issues did not abate immediately, and it's been some weeks now in which they often come back on a low level. There is another person that was on the protocol with me and she has had continuing difficulties after getting off the protocol as well.
Few people know this, but it's important: The protocol as it is currently written, is not the same one the creator of this regimen used on himself to "cure" his Morgellons and Lyme. 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. It did include Moringa powder and Dragons Blood, but at MUCH lower dosages!
He has not stated these dosage differences on his website, nor that he himself did not take MSM or silver. If anyone has read his experience they know that he had very intense herx. reactions using much lower dosages of Moringa and Dragons Blood, two of the components. So what might this higher dosage and additional components do to a person who weighs in at 50 pounds less? The protocol was strong before he added in MSM or the silver Sol and although I know these additions are helpful (for some), if one doesn't manage adding them in well, they might be careening towards a difficult crash. For myself this is exactly what happened. I was unaware that I could not handle sulfur products and only became aware of it months later through DNA testing.
Although the creator stresses continually that one needs to monitor possible herx. reactions it becomes a challenge because the only way you understand the herxing experience is to have a bad one. He also suggests reducing dosages when approaching a strong herx. My experience in reducing dosage did nothing. It was like the train had reached full speed ahead and slamming on the brakes wasn't doing a thing to keep it from stopping.
The protocol I was on (as he wrote it at the time) called for 32 drops of Dragon's blood a day. I believe that is double what he was actually taking himself. I would caution anyone from taking that much of this powerful herb. Since coming off the protocol, I'm having more symptoms of Morgellons (sting sensations), and I am more tired. As far as I know, there are still two people doing well on this regimen. In general one size fits all is a crap shoot when it comes to health and the experiences with this protocol appear to be very different for every individual. I continue to search for other means of dealing with this illness.
Again, I feel there is much to learn from the NB site and many of the suggestions are helpful. Test the water gently and see what happens for you.
Dec 22, 2015: Health has been holding steady but I now feel that it might be sliding downhill. I recently have been having some papercut lesions on my right hand. I also feel as if brain function is being affected. Memory issues. I don't know if it's the Morgellons, or if it's aging. I'm also tired more. I continue with supplementation, but have cut it down to once instead of twice and three times a day. Part of it is laziness, part financial. I continue to be careful with diet. After five years, I still feel strongly that diet is what keeps me in good shape and free from itching and stinging. I'm not perfect with it, but know how far I can push things without becoming symptomatic.
These developments have prompted me to take action and I've purchased a Spooky2 Rife rig with four generators. Haven't begun using it yet, as I'm still studying the extensive manual. Strong learning curve, but I am excited about this move.
May 23, 2016 I began treating using the Morgellons protocol that was created to use with Spooky in early April. Still too soon to know what it will do, but I'm very encouraged. I recently looked at my hairline with the scope and was really surprised to see a massive exit of particles coming from the skin. This was much more debris than I've seen in my 6 years of having MD. I attribute this expulsion to Spooky, since that is all I've been doing that is new.
June 10, 2016 Just had to share these photos!
Below is a massive particle exodus in the scalp. I have never had such a dramatic outpouring as this in my 6 years with Morgellons. The only thing I can attribute it to is rifing with Spooky2 XM generators. This was not all over the scalp, just in isolated areas around the hairline. It's the third time I've checked in with the camera and each time, I'm finding pockets of these particles.
Above: Approx 60x of scalp
Below: Approx 200x of scalp
Above: The above photo from my hair was taken Nov. 2011. You can see how intensely the hair shaft is coated with Morgellons crystal type particles. Hair felt oily to the touch. Below: Photo of my hair June 2016. Real progress! Is it spooky2 that's made the difference? I switched shampoo a few months back to Jhirmack 'SilverPlus' (for silver hair), could that be what made a difference? Unfortunately, I didn't look at my hair before switching shampoo, so I don't have a comparison. I was told though, that shampoo made for gray hair helps strip mineral buildup on the hairshaft that would make gray hair brassy, so maybe that helps strip the deposits from Morgellons sufferers hair. It would be good if someone in the Morgellons community with a camera, could try this shampoo and do a before and after photo. Please note: This is a traditional shampoo. Nothing green or healthy about it.
"Crisis is an opportunity designed to shatter the patterns of rigid behavior trapped within" —From Family of Light
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