A Fellow Reader Asks for Help

I am 34 year old female and have 3 children. I traveled to St Martin in 5/09 with my friends and my husband. Then on 6/4/09 we ( my husband, myself, 3 children and my parents ) traveled to Atlantis, Bahamas. 2-3 weeks later I felt something in my eye, but I didn’t pay any attention to it. At the end of June I traveled to Miami for work. 7/7/09 I went to my friends party and when I came home I felt severe pain going down my right leg. 7/15/09 I was very stressed out and was feeling crawling sensation and some itching. On 7/18/09 the itching was very bad. I took 3 weeks straight of Benadryl 25 mg daily. Then it was getting worse. I was and am now getting small red dots on my skin. No lesions. Then I found ESP Botanicals in August and started using it. I also started using Anu water at the end of August. At this time in August my husband and my mother c/o same symptoms. In October I totally changed my diet. No GMO and became vegetarian. I mostly eat vegetables, some sprouted tortillas and beans. My hair is falling out like crazy. Also in October, I did parasite cleanse and bowel cleanse. In November I started using Poor Mans protocol, Esp Botanicals products, Anu Water, ionized water and infrared sauna at home daily. My and my mother’s symptoms are still there. A lot of itching, crawling. My mother has a lot of biting. I still take Atarax twice a week to control my itching. I also started doing coconut oil pulling.

I don’t know what else to do. My kids need me. Please help.

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Comments on: "A Fellow Reader Asks for Help" (14)

  1. When I would get to the end of my rope and realize nothing that I was trying was helping I would stop everything I was doing. And almost every time I felt better, the body needs to time to get back to normal. Remember, a lot of this battle is in the mind (not that’s it’s DOP but dwelling on it makes the whole experience so much worse). The only way to not dwell on it is to get out, start doing things again …

    I wish you well, nobody every follows my advice to stop taking everything because they are afraid, but in my case, it helped me and then I would rethink things, why isn’t this working? what am I doing that is helping and what isn’t? and so re-add things slowly …

    Will keep you in my prayers, as I am sure will so many others. My advice, don’t talk about it front of your children, you’ve heard me say this before, the fear of thing can be as bad as the “thing” itself. I wish I knew what to say that could help you …

  2. A few recommended musts: Artemisia (e.g., Kroeger Herbs Wormwood Combination, can add Rascal); Oreganol Oregamax caps; all as directed.
    Oreganol oregano oil drops–one drop under tongue a couple x/day– (may not need if doing oil pulling); can use to spot treat skin dots/lesions/itches/scalp sensations–one drop or sparingly, do NOT get into eye or sensitive areas. Wild oregano (not the kitchen herb) is the most powerful natural antifungal, and was also extensively used prior to discovery of penicillin as antibiotic.
    All these products are herbal, non-toxic when used as directed, and one does not build up resistance. Worsening symptoms or illness: likely herx reaction and is OK/beneficial.

    Can shower with teatree/peppermint shampoo (e.g., Paul Mitchell) all over–wonderful, tingly and pleasant, or Selsun Blue type shampoo. Or add peppermint oil to shampoo/bodywash.
    Gold Bond body powder is good for itching, even a dusting on the hair/scalp.
    Aveeno body lotion with menthol (peppermint) is great to maintain intact skin and can even diminish small lesions.
    Keep hydrogen peroxide on hand as well to use as brief spot skin soak.

    Dr. Bronner’s peppermint soap, dilute with half water, for handwash at sinks and to spot treat (directions on bottle for multiple uses). Can use full cup for laundry, or borax-one cup with detergent. Lay a clean pillowcase over your pillow each night, unless you wash sheets daily.

    Rhodiola rosea daily orally for energy, reducing brain fog and depression, and preventing mitochondrial damage to cells. (Well studied in Europe and used pharmaceutically.) Start with 100 mg/day. Safe without side effects–few people get queazy stomach. (See book, The Rhodiola Revolution, by two shrinks, one of whom had chronic lyme and was treated successfully.)
    Antihistamine daily (like atarax, or clariton/loratadine) reduces itching/inflammation and skin sensations, and nasal secretions.
    Consider coQ10 for gums, and mercury-free fish oil to decrease inflammation, even in lungs, joints.

    Oral hygiene is absolutely essential, to decrease infection througout your system.
    Brush teeth after every meal (e.g., peroxide/baking soda/peppermint/teatree oil toothpaste) and floss daily.
    Seabuckthorn oil skincare products are very helpful in reducing facial symptoms (e.g., Aubrey brand–the toner can even be used to wipe eyes, nose, etc. and remove creepy debris).

    Drink plenty of peppermint tea. Light a candle and don’t freak out. Sounds like you are off to a great start in conquering this thing and you will. It may have to run its course, but you will–you are far more aware and prepared than most. You will win.

  3. By the way, your hair will grow back. Clean towel every day, and clothing worn once.
    Helps to reframe this, to see it as some kind of weird fungal infection (though it is much more complicated than that). Or like a combo-herpes simplex virus, which nearly everyone has been exposed to. Or combo-DNA something. I prefer “weird recombo-fungal infection.”

    Make sure you have no plumbing leaks or sewer problems or standing water, or mold.
    If you use a shower, replace the spray head/hose. (Research shows that bacteria/germs grow inside and wouldn’t be surprised if recent news announcement is related to MD. Perhaps that is even why the strong scalp symptoms/involvement??).
    Consider cleaning plumbing and sewer pipes throughout house with enzyme product like Rid-X. May save you money, and your health, in the end.

    Hire someone else to rake leaves if allergic to mold and NEVER garden without gloves.
    If you get a sinus infection, see dr. about an antibiotic and use sinu-cleanse type product to clear mucous and prevent/clear fungal infection. Get it out of your head.
    Avoid using “nature-derived” (GMO) lawncare products (like Bt for grub control), though so much of it is tainted already. Read labels.

    Clean produce well; 1997 govt reference from link on mr. c-s, NanoTransformation, revealed nearly all produce on shelves is tainted with baculovirus. Ann Louise Gittleman, international nutrition expert, in “Guess What Came to Dinner?” recommends a soak to get rid of all germs/unwanteds–a Clorox bath: half teaspoon to a gallon of water (root and fibrous vegetables and thick-skinned fruits–30 min., leafy vegetables and thin-skinned fruits– 15 min., chicken/fish/meats/eggs–20 min.).

    Also, SLEEP is essential to healing. Can use melatonin as sleeper, or 5-HTTP, or whatever if needed.
    You WILL get better. There is the advantage of experience–other people’s. “Whatever works.”

  4. We haven’t talked about food much around here, and lots of folks may disagree, but my opinion is that vegetarian is not the way to go. This almost invariably means lots of grains. Don’t do SOY!!!! No fake meat. No corn unless its organic, and even then, who knows if it’s gmo at this point. Organic meat, grass fed if you do beef, and eggs, lots of good fish, lots of non-starchy vegies, esp leafy greens. Cut way down on grains or maybe cut them out, no sugar. Maybe some fruit–green apples and berries have less sugar, I think. It seems to me that nuts, a vegetarian mainstay, can be problematic. Could just be my experience, but something on NanoT seemed to confirm this. Lots of coconut oil and coconut. I don’t think beans are very easy to digest, and they should not really be in the diet at this point. Lean protein and green leafies and properly fermented food like homemade sauerkraut should be central.
    Seriously you have to do things like sing, dance, walk, see a funny movie, and sleep and know you will get through this. Make up your mind, you will get through.

  5. sistertocommonsense said:

    I agree NO SOY at all. You have had this a short while, you will recover. Panic, sheer panic is not going to help things. You have spoken to so many and they are all trying to tell you the same thing.
    When you are contstantly in a state of utter panic, you can not get better. I have heard panic in your voice, fear and know that you are isolating from friends and your job.
    MRC and I have also told you to back off on doing so much dear, please listen. You are taking too many things and every day, every thought of this is consuming your life and those of your family.
    I understand, you are eating correctly but you are not eating enough protein, just vegetables only.
    Dear Friend, you are calling everyone you know all over the place and rehashing this, your mind has got to slow down. So many have spoken to you from everywhere, you have been to Doctors. Stop the constant fear, chatter and just please calm down, it is making things much worse for you.
    GET OUTSIDE AND DO NOT ISOLATE PLEASE.
    Sister to Common Sense

  6. Lots of great advice here! I second MCS’s suggestion about stopping everything every once and awhile.

    The acupuncturist/herbalist who treats me has me do this periodically. She uses a computer metaphor for what can happen—when you are taking and doing many different things, there is a download effect and you get the equivalent of a crash or computer freeze-up. By stopping for a bit, you allow the body to catch-up on the information overload. I’m not sure I’ve explained it properly–but I do know this happens with me quite a bit. I always get better (at least for a little while) when I ease up on things)

    I also tend to think that if you are taking and doing things that detoxify, sometimes the herxheimer effect can be too much—perhaps there’s just too many toxins from the die-off floating around. I’ve had to stop the infrared saunas for now—they helped at first, but over time, they seemed to be creating worse pain in my joints.

    All of this may just be another way of explaining the computer metaphor—I’m not sure. I just know that starting, stopping, restarting, and recalculating doses has been the most complex part of my treatment. I couldn’t do this without having someone skilled (in herbs and supplements and their effects) monitoring me and readjusting things.

    Also: keep in mind that everyone’s body is different. You may need to take less of something than the next person. And some treatments may simply be too much for you.

    I know it can be overwhelming to try to sort it out–especially when you and your family are coping with the symptoms, which can be so uncomfortable and scary. But hang in there…I really do trust that we can find a way through this.

    • Amen Kelly, I really thinking stopping everything for two weeks at least is a good idea for everyone. If you guys don’t believe me just try it sometime. You will be suprised, each time you do this, you take a step forward, not backward, or at least that was my experience …

      For instance, netmu has some good advice up there, don’t just pile it on top of whatever else you’re doing, stop doing things you suspect aren’t working and add new things in, and that might be the majority of everything you are taking now, just stay safe, start off on new things slow … But by all means, take a good healthy break before switching protocols, let’s your body come around.

  7. sistertocommonsense said:

    Amen to All,
    I have 2 women who had this 8 years and 12 years respectively, they both got to me 2 years ago. They were both totally bald with strange hair, under the scope (mind you their hair was almost non existant just strange hollow shafts approx 1/2 inch long. They both were wearing wigs at the time. We upped their protein, I formulated organic shampoo for both of them.
    We finally had to shave their heads, use Moom depilatory and clean off the scalps and start from scratch.
    They are now growing real hair. When I viewed the “pseudohair” under the scope there was absolutely no protein in the matrix of the hair.
    We got them on Good proteins a non GMO diet and now their hair is growing back real and thick. There is hope…it will grow back and the most important thing is they are getting their minds back through a balanced diet, exercise and good living.
    I am a huge proponent of passive exercise like Yoga for patients, in order to calm their racing minds and hearts.
    They both have children and grandchildren and the children or families show NO sign of this.
    Slow the mind, calm the heart and know you will get well. This disease does not control you, you are control of it. It is a change in lifestyle pure and simple and not analyzing every little bump and lump on your body. Anything looks bad under a microscope if you are not trained in this field.
    The edge of a leaf can look like a monster under a scope.
    Take a break like MRC between protocols, stop chasing your tail. A wise thought, “When you desert your truth in your hour of need it wasn’t your truth to begin with”.
    Find your spirit,find your truth, nothing can take that away but negativity, fear, anger isolation and despair.
    Sister to Common Sense

  8. Dear Fellow Reader,
    Absolutely, you must know that you will get better. It just takes time.
    You are already doing plenty to set your course.
    Your children need you to keep your composure, so you must believe.
    If you do, you will not panic and over-treat. Keep it as simple as you can at any
    time, within reason.
    I believe that is key to getting well, whatever else you do.

    People are getting better with different regimens. You will, too.
    After a bowel cleanse, never made myself sick herxing with this or that.
    Rather, a slow, steady course for me. You will find what works for you.
    For what it’s worth: I reasoned that if the highest concentrations of MD were found
    in warm, tropical climes, then ‘think dry.’

    I never soaked in any way, rather had brief daily, minty shower, and lotioned.
    Spot-treated any spots/itches/lesions as above, or if in a car or in bed or anywhere other than my bathroom, I would use hand-sanitizer on any itch or ‘bite.’ Helped with itching/burning, and perhaps in other ways as well–maybe it helped prevent spread,
    and it definitely helped me feel like I was doing something about it. (And kept me out of the bathroom more often.)

    In spite of the strangeness, the ‘sci-fi’ of it all, there is much that is known about it,
    so you are not just shooting in the dark. Everything you are doing will lead to healing,
    but you must give it time. There is no magic bullet. But there is healing.
    And prayer is a powerful tool. And if you can’t, and even if you can, ask that gifted, blessed friend to pray for you–you know, that special someone you may know who has that gift. It can make all the difference in your life right now.

    • I know it seems overwhelming, but please try to keep things as normal as possible for your children. Mine are in their 20’s and I rarely speak about it in front of them. They know I had some kind of mites and that I clean and do wash a lot more. This can become your life if you let it.
      I also have a lot of hair loss and on top of everything else to see a sink full of hair every day is very upsetting. I also use Anu, ESP Botanicals and follow PMP, and my hair is still falling out. I started using Biotin supplements and sometimes see less hair loss on certain days. I’ve also used Dr. Bronner’s Peppermint soap on my hair (should be diluted) and the scalp sensitivity and head bumps have diminished.
      Above, all try to remain positive, get outside as much as you can and enjoy your children.

  9. lynne st pierre said:

    I am happy to read such positive advice on this site. I agree with most of what has been written. I have a question to pose? Has anyone noticed pilling of your bedsheets? I use Arm and Hammer detergent and Oxi Clean to do my laundry with Bounce Sheets in the dryer. When I start with new sheets (350 or higher thread count), the fitted sheet gradually increases in pilling until it eventually feels like sandpaper to touch. I am suspecting that wherever my skin is in contact with the sheets, there is activity. Whatever is in my skin may be interacting with the cloth or visa-versa. Any thoughts?

    • This is an interesting clue to the M puzzle. When I wet my hands, fine white fibers will often grow out of the finger tips. Now if I rub my wet hands on anything cotton like towels and especially bedsheets that I have previously used, the fibers grow like wild (up to 4 inches long in seconds). I repeated this experiment with pure synthetic cloth
      with no fiber production, so I’m convinced there is a link between cotton (GMO?) and M. Two possibilites are that M is attracted to something in the cotton or I am picking up residue that came from me and the moisture makes it grow.

  10. Dear 34y with 3 sweet Children,

    Will you please email me? Let me know you are from here.
    I believe there is a basic starting point to remove some of the confusion.
    If I can I would like to help.

    pamela@morgellonsfocus.com
    http://www.morgellonsfocus.com

    Blessings,
    Pamela Mae

  11. Lynne,
    To answer your question:
    You may have to trash some sheets, and even some sweaters or clothing.
    I found Egyptian cotton let to numerous blue fiberballs in sheets, so I tossed them.
    Likewise jersey cotton when acutely ill with MD; too rough, and anything like that would be bothersome. You may have to experiment.
    You may have better luck with a percale blend, something smooth.
    I would always add full cup of borax to wash, and unscented bounce sheets in dryer to catch ‘lint.’ (There is even one made now for ‘hair and lint.’)
    Good luck.

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