The Other Side of Morgellons

"I'm just getting started"

Category: lyme disease

Kerry! An Amazing Young Lady With Lyme Disease

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I’d like you to meet Kerry, she’s 19 years old and she has chronic Lyme disease.

When Kerry was 12 years old she caught a cold and it turned into what SEEMED like a very bad flu.

It NEVER went away and in fact became worse.

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Her illness progressed and by age 14 she had lost the feeling in her legs and ended up in a wheelchair.

Doctors had no explanation for what was wrong with her and suggested to her and her parents that she was making it all up.

Then a bit of a lucky break came.

A lady that Kerry’s mother worked with suggested that she get checked for Lyme Disease.

It turned out that Kerry DID in fact have Lyme Disease.

In addition to Borrelia, Kerry has Bartonella and Babesia.

These infections are just the ones she has tested positive for so far and it is likely she has others.

She never had an EM rash and there is no memory of an insect bite that proceeded or seemed to be attached to her illness.

So far she’s had five PICC lines, one life port and currently she has a Hickmans catheter for daily antibiotic infusions. She is also on a special diet and has piles of supplements and things she must do to heal.

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She is often in pain and quite sick and suffers seizures, often many in one day.

I have been following Kerry on Face Book as she documents her journey.

Most of the photos and videos are of her smiling and hopeful but I have seen some that were difficult to watch and she is jerking and twitching and her speech is slurred.

This young lady has been through a lot and obviously it could not be summed up in a blog post but this video is a peek into what she’s been through:


The healing is slow and is hard going but progress IS happening.

Late last month I saw several posts that gave me so much joy.

The feeling is coming back in her legs and when I saw her wiggle her toes it was an amazing thing.

Then I see another post and guess what (with the help of a walker) she’s standing up AND……..

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next I see she is  WALKING short distances.

To watch this young lady heal is one of the most amazing experiences.

She’s still very sick and has a long road ahead of her but at least she has a road in front of her.

I don’t even want to think about what would have become of her had someone not suggested she

get tested for Lyme and I really can’t stand the idea that there are many sick out there that have no idea they have Lyme disease.

Lyme Disease is far more common than most understand and It is called the great imitator because it can mimic almost any other illness.

It affects each person differently and I would like to point out that while this is Kerry’s experience with Lyme, another’s experience can differ greatly. I say this because if you or someone you know thinks they might have Lyme don’t decide you don’t because you aren’t as sick as Kerry.  Lyme comes in every degree and flavor.

Lyme Disease is the sixth most common reportable illness in the Untied States and it is estimated that it is 4 times more common than HIV.

Lyme Disease can cause meningitis, kidney and gastrointestinal problems, paralysis and psychiatric disorders and it can be fatal.

Most Doctors don’t know what to look for and the test is notorious for giving false negatives. DO NOT be deterred by a negative test.

Meanwhile those sick with Lyme have been left out in the cold and forced to pay outrageous amount of money seeking private care. For many that can’t afford private care, they are forced to live sick and suffer. Until the CDC and ISDA acknowledge chronic Lyme Disease and change their guidelines, The insurance companies are getting away with murder for denying payment for treatment.

Each year, more than 30,000 cases of Lyme are reported to the CDC however the CDC has recently admitted that number is roughly TEN TIMES HIGHER than previously reported. I often think about those 300,000 and the even bigger number that have been misdiagnosed.

In the meantime can we get some prayers, high fives and good vibrations for Kerry?

I’m rooting for this young lady in the biggest way and I do believe I picked a winner.

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Lyme Rage

Whatever Morgellons disease turns out to be, for me it was a blessing. It taught me I have Lyme disease.

I get sad when I wonder how many people out there have Lyme and don’t know it.

 How many people just think they’re only crazy lazy, or stupid.

 I wonder how many people are in mental institutions or prison or just lost in their own house (until they lose their home) because Doctors have failed to accurately diagnose them.

Who’s fault is this?

I know my own private Doctor is a good Doctor and a kind Doctor and she truly didn’t know what Lyme disease was or that I had it.

 She could have never diagnosed me for an illness she knew nothing about.

Who’s fault is this?

Is the Center of Disease Control really that powerful?

I watched the video below and I saw myself and my life in those people and I realize I’m crying because I’m angry that I let Doctors, so-called specialists call me crazy. I took their pills and I did what they said and I believed them when they said I was I imagining the pain and it was only stress that caused me to get lost in my own neighborhood.

For myself I lost a lot of time to Lyme.  I’ve had it for most of my life.

If I told you what I’ve been through, it might make the hair raise on the back of your neck.

I can’t say I lost my life because I’m better than that and I’m bigger than Lyme and I would like to think I transformed my illness and got as much good as I could from it.

The problem for me is when I think of my lost time and I multiply that by an unknown number from all the people who have Lyme. That’s when I become outraged.

That’s a lot of lost time and potential.

If not for Lyme, my sister would have been a Doctor and when you start adding up the number of sick and multiply that with collateral damage, it starts to get ugly.

Meanwhile America is going to the dogs and I wonder how many of the sick could have been watch dogs for liberty, only they can’t get out of their beds.

How did this happen?

Is the CDC really that powerful?

Call me crazy but this humongous fuck up doesn’t feel like an accident and yes I’ve gone back to swearing.

I cleaned up my gutter mouth for a long time because I realized people don’t listen when you swear and I thought it was just more graceful;

But this disaster is an epic disgrace and “I am myself the matter of my book”.

I see videos like this and I get mad, I just don’t know what to do about it. I’ll keep talking and probably cussing until I figure it out, thank you for listening.

Please watch this video of two Vermont farmers suffering with Lyme disease.  It’s less than 10 minutes of your time.

http://www.battlecreekenquirer.com/videonetwork/2487591771001/Afflicted-Lyme-disease-in-Vermont

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Nine Reasons for False Negative Lyme Disease Blood Test Results

Nine Reasons for False Negative Lyme Disease Blood Test Results

From the Lyme Disease Foundation brochure, Frequently Asked Questions About Lyme Disease

1. Antibodies against Borrelia burgdorferi (Bb) are present, but the laboratory is unable to detect them.

2. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the patient is currently on, or has recently taken, antibiotics. The antibacterial effect of antibiotics can reduce the body’s production of antibodies.

3. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the patient is currently on or has previously taken anti-inflammatory steroidal drugs These can suppress a person’s immune system, thus reducing or preventing an antibody response.

4. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the patient’s antibodies may be bound with the bacteria with not enough free antibodies available for testing.

For this reason, some of the worst cases of Lyme disease test negative — too much bacteria for the immune system to handle.

5. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the patient could be immunosuppressed for a number of other reasons, and the immune system is not reacting to the bacteria.

6. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the bacteria has changed its makeup (antigenic shift) limiting recognition by the patient’s immune system.

7. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the patient’s immune response has not been stimulated to produce antibodies, i.e., the blood test is taken too soon after the tick-bite (8-6 weeks).

Please do not interpret this statement as implying that you should wait for a positive test to begin treatment.

8. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the laboratory has raised its cutoff too high.

9. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the patient is reacting to the Lyme bacteria, but is not producing the “right” bands to be considered positive.

I would also like to add this from the ILADS site:

LYME DISEASE IS A CLINICAL DIAGNOSIS. THE DISEASE IS CAUSED BY A SPIRAL-SHAPED BACTERIA (SPIROCHETE) CALLED BORRELIA BURGDORFERI. THE LYME SPIROCHETE CAN CAUSE INFECTION OF MULTIPLE ORGANS AND PRODUCE A WIDE RANGE OF SYMPTOMS. CASE REPORTS IN THE MEDICAL LITERATURE DOCUMENT THE PROTEAN MANIFESTATIONS OF LYME DISEASE, AND FAMILIARITY WITH ITS VARIED PRESENTATIONS IS KEY TO RECOGNIZING DISSEMINATED DISEASE.

DR. Alan MacDonald Interview…Mutant Spirochetes and Much More

DR. Alan MacDonald is truly a Lyme hero. I could listen to him talk all day. He really simplifies this complicated subject. In this interview he speaks on the morphologies of the spirochete and testing. He talks about a woman that  tested negative for 7 years. After 7 years they found the spirochetes were in all her spinal  fluid bound up in immune complexes.  Her infection was a European strain and US kits don’t pick these up. For those of you that haven’t tested positive you really want to listen to this…he explains very well exactly why it is so DIFFICULT at times to get a positive.

I’m only part way though the interview. I wanted to get this up while I remembered those few points.

Oh he’s fantastic!  he’s speaking about the co-infections right now……. he’s quizzing the talk show host in a such a fun way….gotta go!

PS: It’s a long interview. Put this on when you feel like just relaxing and listening.

http://www.blogtalkradio.com/in-short-order/2013/05/05/in-short-order–dr-alan-macdonald

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The Other Side of Morgellons

Hello. I had intended to make a video to sort of catch up. I thought a video would be more personal and warm. Well the words of what I meant came out but the video (my camera) did not cooperate. I am also having some internet connection problems. I know the video is blurred and it is weird-looking but I was happy with the dialogue. It was what I meant to say (and that doesn’t always happen). Please bare with the poor and strange quality. It seems things are breaking faster than I can keep up. I don’t let those things bother me much anymore.

As far as new posts go, I had intended to go right into food and diet. I have decided to take a little detour from that. I still plan to get some great food posts up but I have decided to wait until the holidays pass and also to get my kitchen out of boxes. I do a pretty good job in my make shift kitchen but it will be nicer and easier for me after the re-model and holidays.

I have also decided to change the title of this blog. Originally I purposely chose to leave the word “Morgellons” out. I had my reasons, as you might understand. I have changed my mind on this subject. I have done so because I feel putting Morgellons in the title will accomplish several things. First of all it will make this blog easier for those with Morgellons to find. Also I do not want to even slightly appear as though I am participating in the delusion that Morgellons does not exist. I know those that suffer know how very real it is. Morgellons has a name and many people are living with it and this blog is about living with Morgellons and coming out the other side.

I Was Falling and You Caught Me

I took my dog to swim in the sea today. I wanted to get to the part where no one goes so he could be off the leash and it would just be us.

To get to that part of the shore, it takes a little trailblazing. I have to go down a steep bank along side a creek. It has been raining so it was slick and with my rain boots being rubber and all I slid and nearly got dumped into the creek.

I was saved when I grabbed onto a tough bushy plant basically growing out of rock. I used the plant to lower myself down and found my footing.

When I looked up at the plant and realized what it was I laughed and thought to myself …”exactly and of course”.

The plant I was looking at was Japanese Knotweed, the toughest she plant around. Japanese Knotweed reproduces with tough rhizomes that can penetrate the most unforgiving terrain.

It grows anywhere and it grows fast. It is difficult to eradicate and no one wants it around because it can destroy foundations and overtake native plants. This is why they call it an invasive species and think it’s a good idea to throw Roundup on it.

The funny part of this story is the reason I went for the walk was because I was ditching this post that I have been trying to write about resveratrol.

Then ten minutes later, there I go sliding down the bank into the hands of Japanese Knotweed which is  one of the places resveratrol comes from and according to Stephen Buhner, it’s one of the best places if you are treating Lyme.

If you have read his book “Healing Lyme” you will see it is at the top of his protocol.

I didn’t  follow his protocol exactly but I did borrow from it and resveratrol was one of my picks.

For those of you that know my story of recovery, you know I did a lot but with a heavy emphasis on medicinal plants. I chose to put japanese knotweed into the mix for several reasons.

After a little research I found that resveratrol is a substance that plants produce when they are under attack by pathogens. For instance, The grapevine will start producing resveratrol when it is under attack from mildew. I couldn’t  help but wonder if this substance might help me fend off pathogens as well.

What really got me interested in Japanese Knotweed was something I remember finding on the internet that Stephen Buhner said. It was so perfect and elegant but I couldn’t find it again.

All day I was trying to recall where or how he said it.

So you know what I did, I sent him a message and asked him and this is what he wrote back:

“Japanese Knotweed tends to emerge in regions where Lyme is becoming endemic; the root of it is specific for Lyme, most especially reducing the brain inflammation that Lyme causes. This is common with many plants and many disease conditions such as sida invading regions where resistant bacterial infections occur.”

How beautiful is that? Not only that he took the time to message back but also what he said.

It is almost as simple as when you are stung by nettle and you rub dock on it to take the sting away. Dock and nettle grow together.

I find it amazing that where Lyme is, there we have this “invasive species” that has this incredible healing power.

It is also a little funny that while many are trying to kill this plant it produces a substance that all those crazy people who want to live forever are paying big bucks for. You may already know that resveratrol is touted as a life extender.

I am revisiting aspects of my recovery because I am trying to figure out which part of what, healed me. I don’t believe I will ever know. I can’t say that Japanese Knotweed was what did it but I can say it did make me feel a lot better.

It made me feel better today when it kept me from getting wet. It also makes me feel better just knowing about it. It makes me understand nature and that there is a rhythm and I do have a place in it.

This is why I care about plants so much. They’re messengers and they go inside me and do mysterious things. I don’t have to know exactly which phytochemical did this or what study said that.

I suppose I am thinking about the more intuitive side of healing and the part our souls understand.

In chronic illness such as Lyme and especially Morgellons, we are often confused as to what to do and we are in it for a long time. No matter what, it is a long hard journey. It has been important for me to find the little gems in the rocky road. It has been important to make my recovery part of my life as opposed to waiting for my life at the end of my recovery.

I think that’s why I chose food. I have to eat anyway, I may as well make it count. I enjoyed cooking before I was ill, so healing myself with plants was not far from the me in my former life. With chronic Illness we are so stripped of ourselves. We have lost a lot. With plants I could keep some of myself no matter how sick I became or who walked out on me. While I did go into Lyme treatment and was treated with some serious pharmaceuticals, I still treated myself with plants and that gave me a sense of empowerment. Also when I was covered in lesions and bedridden and a doctor would not help me the plants were there for me.

I am not suggesting anyone treat themselves or forgo medical care. I am only saying plants have a special place in my heart and along my healing road and they heal me daily. I’m not going to cite any studies about Japanese Knotweed but I will say if you have not read “Healing Lyme” yet, it’s awesome.

Really quick I would also like to say that if you are very ill with Morgellons and are trying to find a doctor that won’t call you delusional, look to the Lyme doctors. My Lyme doctor and others are treating Morgellons as a co-infection to Lyme because many Morgellons sufferers are testing positive for Lyme. Also look to the Lyme naturopaths, herbalists and Ayurvedic practitioners.

For more information about Morgellons disease or to get involved, visit the Charles E Holman Foundation here: http://www.thecehf.org

For more information about Japanese knotweed, Stephen Buhner, the books he has written and his Lyme protocol you may visit his site here: http://buhnerhealinglyme.com

You Can’t Go Wrong With Vitamin C But You Can Make it Better!

We’re talking way better! We are talking about liposomal Vitamin C.

First I have to give a big thank you to Sharon for sharing this. She constantly provides accurate, relevant information and resources.

I am not going to write much here but rather just give the links. I will say that I feel like this one is a big winner. Real big!

The first link is a short and simple tutorial on how  to make liposomal vitamin C. The next link is from the same man and provides a huge amount of info in the way of dosages,  resources and much more. Be sure to follow all the links he provides (lot’s of excellent info there). I love this guy and I love Sharon for bringing this to us.

Short and simple vitamin C tutorial:

Lot’s more info here!

http://8aloha.com/Liposomal_Vitamin_C.html

“Diamond Teeth”

This one goes in the “switch over”  section. Most of you already use a non fluoridated toothpaste. I wanted to put this up real quick anyway. Like always I don’t like suggesting expensive things or suggesting people to run and buy lots of stuff. I really believe this is a great deal and most of us buy toothpaste already.  Morgellons caused me a lot of problems with my teeth. Even causing me to have several  pulled because they cracked at the root in teeth without cavities.

Oral hygiene is very important  for both Morgellons and Lyme sufferers. I make my own mouthwash with various ingredients.  Into a distilled water base I will add colloidal silver, drops of various essential oil or use a homemade tinctures of cinnamon, sage, and rosemary. Homemade tinctures are a bargain and I will write about that in a separate post because they are a huge bang for the buck, so E-Z to make, and you can use them for almost every facet of morgellons self care. Another thing to think about is swishing plain kefir or yogurt around in your mouth after you floss, brush and mouth wash (to repopulate the flora in your mouth). I learned about that from the ILADS site.

Vicco is an Ayurvedic toothpaste that taste great. For $4.50 you can get a tube and it is concentrated so it lasts longer then the other stuff. Plus it is designed to help teeth and gums. Even if your teeth and gums are fine it is probably a good idea to take fluoride out of the picture. Another option is to make your own toothpaste with a coconut oil base and various ingredients like baking soda and a few drops of cinnamon, peppermint and or clove oil. You can put it in one of those plastic picnic squeeze bottles. Even using plain baking soda it  is a better choice then regular commercial toothpaste.

From the Vicco website:

“Vicco Toothpaste contains more than 20 herbal extracts.  These herbal extracts are chosen for their beneficial effect on the teeth or the gums.  Vicco is made from herbs, barks, roots and flowers, not from artificial chemicals.  In fact, Vicco Toothpaste is formulated to include a number of extraordinary herbs which have a significant action on the gums.  You can feel the tingle as you brush as the astringent, tightening action of the herbs go to work.  Vicco Toothpaste includes the famous Ayurvedic herb called Vajradanti, which, when translated, means “diamond teeth.”  It contains no artificial ingredients, no harsh abrasives, no fluoride.”

I found a place online where they sell it for $4.50.  On amazon and other places it is more like $7.00. I would go for the $4.50 price (right!?)

http://www.lotusbrandsmall.com/scat.php?link=VICCO&subcat=3121&vendor_id=00429

A Big Winner for Lyme and Morgellons Aches, Pains and Frustration’s

With many chronic illness’ we suffer a lot of physical pain. Many of us  are already taking a whole bunch of  pills and supplements to kill of off various infections and to also rebuild bio terrain and support our immune systems.  It’s a lot of pill taking. On top of my supplements, when I went through my Lyme  treatment it was an insane schedule of medication and really difficult to keep up. Five days a week I had to give myself intramuscular Rochepin injections.  I also took biltricide, flagyl, albendazole, mebendazole, ivermectin, fluconazole, and I am sure I have forgotten to mention one or two.

I will go into what my Lyme Dr did for me in another post.

Between my natural supplementation and my pharmaceutical med schedule, there was almost not a time of the day when I was not swallowing a pill or getting stuck by a needle or having to gulp something down.

I was also in a lot of pain.  When the meds kick in a die off process happens and sometimes it makes you really sick.

Dealing  with pain is a fact a life.  Pain killers can be bad news and usually they don’t really even work. There are other options and today I want to talk about a very simple, inexpensive and safe option.

Trans-dermal magnesium is a fancy word for rubbing or spraying liquid magnesium onto your skin  (or even just taking an epsom salt bath). Those of you with Lyme might want to consider this option as there has been talk that oral magnesium supplementation aids bio film growth. This could also be something the Morgellons sufferer might want to consider.

Now my dad seems to think you can’t  get anything through the skin (I’m sorry daddy, not to be contrary, but you are wrong).  If that were true nicotine patches wouldn’t work. Many women take hormones via a patch on the skin. The skin is an amazing and complex organ and that’s an important point. Skin is an organ and it is endowed with as many gifts and ability to perform complex functions as all the other organs are.

Dr Sarah Myhill  (chronic fatigue specialist) writes:

“A recent paper by Rosemary Waring from Birmingham has been very helpful. She did experiments with people looking at the absorption of Epsom Salts in the bath. A 15 minute bath at 40ºC with a 1% solution of Epsom Salts caused significant rises in plasma magnesium and sulphate levels together with an increase in magnesium excretion in the urine. To achieve a 1% solution, a standard UK bath of 15 gallons requires 600grams, (just over a 1lb) of Epson Salts. The water should feel slightly soapy. In this experiment there were no adverse effects, indeed 2 of the volunteers who were over 60 years of age commented without prompting that their rheumatic pains had disappeared. Magnesium chloride could also be given through the skin. Again there is good scientific work showing that magnesium chloride is well absorbed through the skin. The recipe for this is a 33% solution of magnesium chloride. So if you take 333grams of magnesium chloride (I can supply) into a jug and make this up to a litre this will give you the correct solution. You may have to warm this up for it to be completely dissolved. Or you could add a bit more water – it really doesn’t matter. The daily dose is then 10mls (or more) rubbed onto skin. Use soft skin such as in the tummy or in the armpits or inside the thighs, don’t wash it off subsequently but every day add to magnesium on site – as the levels build up the absorption will be improved”.

For another brilliant way of absorbing magnesium through the skin see Magnesium cream – how to make it and use it.”  if that link does not  work try this http://www.drmyhill.co.uk/wiki/Magnesium_cream_-

By the way, that link provides excellent information on how to make a simple topical magnesium cream and how to use it.

Here is another excellent link to learn how epsom salt helps you detox: http://www.enzymestuff.com/epsomsalts.htm

This morning I woke up with some pain in my lower back. I rubbed a little mag oil on it and it’s fine now. Many lyme patients  (myself included) feel magnesium softens their neurological symptoms. My nuero symptoms seemed to be gone for now but it wasn’t so long ago I was experiencing on and off flares  and during my treatment….it was really bad!  During the flares I was amazed at how fast I could get back to normal with a good hot magnesium bath (epsom salt).  Magnesium in what ever way you want to get it in your body is an over all no brainer.

You can buy magnesium oil in a spray at the health food store or you can easy squeezy make your own for just a few bucks. It really is a comfort to use. I don’t like the spray because it stings when I spray it on. I like to apply a little liquid by hand.

When you apply magnesium to the skin it is an all over winner because it is performing several functions. You are supplementing magnesium but also experiencing pain relief. It is inexpensive as well.

With Morgellons you are NOT going to want to use it on open lesions, trust me, it hurts. Use it on healthier sections of skin. You  will find that magnesium oil makes your skin amazingly soft and healthy. That right there is another bonus for the Morgellons patient!  At the health food store I bought a little container of  magnesium to carry in my  hand bag (for frustration when I am on the fly).  It was  $3.99 and I fill this little container up from my big home-made batch that I keep in the bathroom and rub on after bathing.

I try to not suggest too many products for someone with Morgellons to run out and buy. It is a very costly illness (Lyme too) but the magnesium oil is so inexpensive and such all around do gooder that I feel it is a must have  in my personal arsenal and have no reservations about suggesting one use it.

It’s nice because it works fast and it one less pill to take. It also relives pain. Many Lyme patients are magnesium deficient. I am going to go so far to say that most  likely the Morgellons patient is as well.

Also the sulphate in magnesium is repulsive if not down right lethal to many external parasites (it can’t  hurt to be safe..right?)

PS: My father is a brilliant man and he is almost always right. If you need your airplane repaired he is the man to call. I am just a little bit proud today to  be able to say “you’re wrong and I’m right….yay”. Why does It feel so good to be right  and why do we love to tell people they are wrong? This subject deserves its own post. Mmmmmm….. thinking… best to all,  Tina

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an excellent article on morgellons disease

this article about morgellons disease was published in “public health alert”. towards the end a doctor from germany talks about some of his treatment strategies.  he goes into some herbal approaches which i really like.

here is the link. enjoy and be well (i am going to try and make the link work again..if i can’t you might have to cut and paste it..it’s well worth the few seconds)

i am having trouble linking directly to the article. if you follow this link, it will take you to the front pagen of “public health alert” scroll down to the morgellons conference 2012 article. if that doesn’t work just google “public health alert june 2012” that is the issue the article is in.  maybe i am unable to link to it because i am not supposed?  with a little search you can get to the article.

http://www.publichealthalert.org/