Legions of Lesions (the sequel)

*SQUEAMISH ALERT*
Do not continue to the photos in the ‘read more’ part of this post if you are squeamish…these photos are graphic and alarming.

This post is about my continuing battle with a horrific cluster of lesions on the back of my neck and upper back, primarily; smaller clusters have been located on my lower back, upper leg, shoulder and upper left arm, sides of neck, and hairline. I’ve had three previously on my face, which thankfully healed without scarring, although a current one located between my eyebrows will likely leave a small scar. For the details and history on this, continue reading, but be warned that there are graphic photos and descriptions which may be upsetting.

If you’ve chosen not to read farther, please know I continue my battle diligently and bravely, though it is one of the hardest I’ve ever faced. At times, I’ve nearly quit…I’ve worked hard at keeping on when there is no light at the end of the tunnel, even when the darkness is so enveloping you cannot fathom the tunnel, itself. I suppose that is faith, moxy, courage…stubbornness…willpower…stupidity…rolled into one. Bravery is not the lack of fear, after all; it is the willingness to walk headlong into the thing you fear most, despite that fact. I have been terrified, frankly. I’m still pretty scared, although I’ve finally seen some improvement that gives me hope and a glimmer of what may be a light at the end of the tunnel (hopefully it isn’t an oncoming train). I am a person well acquainted with high levels of pain. I don’t flinch easily from pain. This has left me sobbing like a lost child, shaking with a fear I can’t put into words, and don’t want to. But I am still here.

On a particularly bad day, I had a less than optimal exchange with someone who accused me of having a death wish. On that day, perhaps part of me did, but the truth is, I know no one who works harder at seeing the bright side than I do. I have many faults, but one of my strengths is optimism. And gratitude, that is another. I take little for granted. I find something in EVERY day, no matter how hard, painful, scary, demoralizing…I find something to take a it of joy in. Every day. So you can never judge a person by a mood or a bad day or an exchange when that person may have hit their limit…it is never the summation of who they are.

But I digress. It’s a hobby of mine.

If you’d like to read the nuts and bolts of the battle, carry on…if you stop here, I completely respect that. This isn’t easy to see. It’s worse to live.

Note: Please see part one, Legions of Lesions, including the comments, before reading this post.

Before I begin this post, let me first say that I don’t presume that I have ‘Morgellons’ or, for that matter, that Morgellons is remotely understood. My personal opinion is that Morgellons is a catch all term for a collection of symptoms heretofore a mystery; they may be an assortment of similar conditions, or simply a convenient label for a syndrome that has yet to be identified. I include some of the information about it here simply because it is a convenient summary of otherwise unexplained things (apart from those that can be explained by another condition I have).

…the CDC published their ‘findings’ on Morgellons disease in January 2012 and proclaimed Morgellons to be delusional parasitosis and not a physical ailment or recognizable disease…

Whatever it may be, I do not believe it is ‘delusional’ at all. It is unfortunate that medical mysteries are too often classified as idiopathic, psychosomatic, or the result of hypochondria or some other ‘mental’ condition. At one time, Dysautonomia was looked upon in this way (some doctors actually still do look at it that way, despite clear evidence to the contrary). And that’s just one example…there are so many I could list, but I will save my ‘spoons‘ for other things.

I may or may not have whatever has been labeled ‘Morgellons’ – I have no idea what these lesions are, nor does any doctor I’ve seen. No other person I’ve been in contact with (or read about) who has the same or extremely similar presentation has EVER gotten answers as to what ‘it’ is. I am not going to self diagnose this. I am simply going to present it. I can say that it has a great deal in common with what was defined as ‘Morgellons’ going by the 93 symptoms compiled by the former Morgellons Foundation. I will include those symptoms, with my notes, in this post following the photos.

I don’t personally like the term ‘Morgellons’ because it is surrounded in controversy; if you google the term, you’ll find all sorts of conspiracy theories and so on about the alleged origins of it, as well as all sorts of ‘treatment’ options. I also tend not to like things that are classified as either idiopathic or psychosomatic, etc., for what should be obvious reasons. What I have may be something entirely different than the so-called ‘Morgellons’ even though it seems to present as described by those said to suffer from that condition. It is possible that many of those people also actually have/had another condition heretofore unidentified.

I have found several commonalities among some of us who suffer similar variations of these Legions of Lesions:
* connective tissue disorder, primarily Ehlers Danlos
* some sort of autoimmune issue (two sufferers I know have Beçhets, I have Sjögrens and Vitiligo and RA, for example)
* often a suspicion of or history of recurring Candida
* often Lyme has been previously diagnosed, or suspected; concurrently with this, some have had worsening with broad spectrum antibiotics such as Doxycycline (this is probably true for me…I had Lyme in the summer of 2009, took Doxycycline and that is when the earliest non-lesion symptoms really began…also a second round of Doxycycline preceded the severe worsening of my lesions to the critical stage)

Could all this be coincidental? Possibly. I tend to doubt that, myself, but this is only my opinion. My original post, Legions of Lesions, outlines some of my symptoms and presentation. At the time I wrote that, I would not even consider ‘Morgellons’ because it was a dead end non-answer, and not a word I would ever say to any doctor. Doctors would, I believe, label me negatively if I went anywhere near that term. So I don’t go there. If you happen to suffer similarly, it is my personal suggestion that you NOT mention anything like ‘Morgellons’ to any doctor; instead, simply present your physical symptoms, nothing else. This is my non-medical, strictly personal advice, to be taken or disregarded as you please.

PHOTOGRAPHS
I began treatment with NutraSilver on 15 Feb 2014 and have seen what I feel is rather drastic improvement, particularly at day 6. Below is a daily progression, with the top row showing the most recent days, and the bottom row showing the earliest days.


click the image above to see a full scale view

I will not know for another few weeks if this will totally clear my system of these Legions of Lesions, but I am hopeful for the first time in nearly a year. I owe thanks to my son for finding this option…it may have saved my life. I cannot describe how painful and horrendously miserable this had gotten. It is still hard, but the improvement is quite impressive. I have also observed foreign matter passing in my stool (matter that looks exactly like the ‘things’ deep within the lesions). I have noticed many have dried up and flaked off. Many of the ‘things’ have risen beneath the skin, sort of gathered in piles that feel like a little stack of logs under the skin. Several lesions have healed or almost healed, others have considerably shrunk and are less painful (this pain includes a deep stinging/burning itch so intense it is indescribable, as well as a feeling of being on fire, as if there are shards of molten metal burning me…I have to put ice packs on these areas to tolerate it and reduce the heat, which you can feel through my skin). I am a pretty tough chick, used to high levels of pain, but this had gotten so bad I was bawling like a baby in a misery that defies words. I’d lost hope before I tried this treatment. If you want to find out more about what NutraSilver is and what it addresses, please visit the pages on their informational site. I am not a representative of NutraSilver, nor am I an affiliate of any kind…I do not stand to make any sort of gain or commission by recommending it; I am simply sharing my personal experience with trying it. I will continue to post my progress, whatever that may be.

The Morgellons Research Foundation (since closed) has identified ninety-three specific symptoms associated with Morgellons. No one has all of these symptoms. Morgellons is a name that is used to define a cluster of symptoms that are systemic in nature. They effect several different systems in your body. It is really good news to know that only 35% of Morgellons sufferers ever experience the open weeping lesions that is so often referred to on the Internet. Typically Morgellons lesions are one of the last symptoms to express themselves. Most often people complain about cognitive issues, and a biting, scratching or movement in the scalp. These are the most pervasive symptoms for the majority of Morgellons sufferers. Often times a Morgellons sufferers will forget what they’re saying mid-sentence. They feel embarrassed, sometimes angry that they’ve lost their train of thought when in fact this is a symptom of Morgellons and not their fault (from the NutraSilver page on Morgellons).

Here is the Morgellons Research Foundation’s list with my notes (an asterisk* indicates the symptom applies to me, with the understanding that many of these symptoms may also be explained by other conditions with which I have been diagnosed):

Morgellons Symptoms in Nose, Nostrils, Nasal Passages and Sinuses
• Allergies or sinus problems: excessive congestion, mucus production *
• Mucus is thick, stringy, cohesive, dries into very hard substance -
almost glue-like * (believe so)
• Scents are not perceived correctly, may fluctuate from keen sensing ability
 to no ability to perceive any scent at all * (usually keen, rarely none)
• Nostrils develop excess thick hair (not sure, don’t think so)
• Nostrils develop very sore pimples * (yes but not sure if this is actually abnormal)

Morgellons Symptoms in the Mouth and Throat
• Teeth become sensitive, crack, chip, feel like they’re becoming hollow * (one chip, sensitivity and hollow feeling, no cracking that I am aware of)
• Teeth become loose and/or fall out (no)
• Sore or tickling throat * (horrible)
• Hacking cough (occasionally)
• Constant sinus drainage *
• Glob of congestion always hanging at back of throat *
• Taste buds malfunction, may fluctuate from keen tasting ability to having no taste perception at all *

Morgellons Brain Function (Cognitive) and Personality Symptoms
• Memory loss – short term, recent memory: “What was I saying?
 Where did I put my coffee mug? What did I do yesterday?” * (severe)
• Brain fog: groggy, unclear thinking * (severe)
• Thought processing becomes very taxing, difficult *
• Unable to think of specific words when communicating *
• Writing, and especially spelling, becomes difficult *
• Inability to focus or concentrate: ADD/ADHD symptoms *
• Mood disorders and mood swings, including loss of temper *
• Libido: lack of (no sexual interest) * (somewhat, but I attribute this to the physical discomfort; generally not am issue when lesions are not painful)
• Loss of interest in things that normally interest you *
• Depression and/or confusion or disorientation *
• Personality changes, like loss of creativity or loss of existing skills *
• Neurological problems: clumsiness, stumbling while walking, impeded speech *


Morgellons Symptoms in Hair
• Hair appearance: stiff, brittle and dry *
• Wiry, uncontrollable hairs replace normal hair *
• Hair texture and color may change as more “wiry” ones grow in *
• Hair loss (not sure, my hair is so thick it is hard to tell)
• Small glob of clear sticky substance at root end of hair when it falls out, substance may coat hair shaft * (sometimes)
• Hair color does not adhere well to new hair growth *


Morgellons Symptoms in the Eyes
• Floaters on eyeball surface * (I had these a long time, though; they have gotten worse)
• Loss of visual acuity * (intermittent)
• Increase in discharge, often stringy * (flaky)
• Sandy or gritty feeling in eyes *
• Feeling of foreign objects in eyes but cannot locate or remove *
• Eyes are extra-sensitive to light *
• Eyesight is generally weakened * (I believe so, but mostly intermittent)
• Night blindness *
• Eyelashes fall out, may be replaced with thick, wiry discolored lashes (no)


Morgellons Symptoms on the Skin
This category of symptoms robs you of sleep and therefore, your sanity. A majority of Morgellons sufferers feel a weird crawling sensation as if there is something crawling on or under their skin.
• Crawling feeling on the skin, like invisible bugs *
• Pinching, biting, stinging or prickling on the skin *
• Lesions: itchy, sore or painful, very slow-healing with little or no infection sometimes containing “fuzz” * (yes except not sure about fuzz part; believe that is likely external fiber clinging to lesion)
• Crusts/scabs/callus-like formations on lesions: painful and difficult to remove because of tentacles clinging to flesh * (extreme)
• Open cuts or wounds: very slow healing with little or no infection, sometimes containing” fuzz” * (yes but not sure about fuzz part; believe fuzz is external source clinging to lesion)
• Objects described as “granules,” hard and crystal-like, similar in size and shape to sand grains, can occasionally be removed, or can emerge from either broken or intact skin * (HORRIBLE)
• Objects described as “shards,” hard and crystal-like that are similar to glass that emerge from skin * (HORRIBLE)
• Black seed-like “specks” or “dots” on, or in, the skin or emerging from lesions * (yes; definitely something like small thin dark splinters)
• Tiny “fuzzballs” in the lesions, emerging from lesions, and on/or falling from intact skin (not sure; I think this is from external sources clinging to lesion surface)
• Black tar-like substance coming from skin pores * (occasionally but rarely)
• Skin texture: leathery, callous-like areas often where lesions had previously been located * (HORRIBLE; these areas must be gently and consistently exfoliated to get rid of callous)
• Growth of new wiry or thick hair over the top of where lesions had previously been *
• Pimples: sore, long-lasting, can’t squeeze out – contents are removed in same fashion as a splinter and are moist but cohesive * (like rice grains or bulbs)
• Rashes: unusual, appear/disappear rapidly for no apparent reason, also appear where adhesive portion of Band-Aid is applied * (I wonder if my sudden adhesive reaction is related? Also have had sudden rashes on legs and arms appear and disappear with no apparent cause)
• Skin pigment changes (gets lighter or darker, more difficult to see in fair skin tones) * (I have vitiligo so this is harder to tell, but yes)
• Stationary or ‘creeping’ worm or wire-like structures can be seen just beneath the skin surface * (I believe so)
• Skin loses its elasticity and appears to sag, especially when warm, less so when cold (no, this one does not seem to apply to me, perhaps this presents differently with Ehlers Danlos)

NOTE: If you try NutraSilver, NEVER place NutraSilver directly on a lesion; it will heal and then create new lesions. The best regimen is to follow the instructions that come along with your order; take NutraSilver orally as described.

Morgellons Physiological Symptoms of the Body
• Cannot sense temperature of water – water is very hot and it is not recognized *
• Alcohol/liquor intolerance *
• Appetite decrease or increase *
• Weight loss or weight gain * (both; yo-yo, bloating)
• Food cravings or total lack of interest in food * (both)
• Gastrointestinal problems *
• Swelling or edema, including breast edema, feet especially known for swelling * (feet)
• Back ache – lower back *
• Back pain – neck and shoulder pain *
• Chronic fatigue – total exhaustion, physical depletion *
• Insomnia during nighttime, or sleep abnormally long amounts (day and night) *
• Weakness – strength diminishes *
• Bloating *
• Joint pain *
• Muscle twitching or cramping *
• Dizziness, disorientation, vertigo *
• Seizures (?)
• Blood pressure problems (high or low) *
• Heart races or beats irregularly for no apparent reason *
• Liver problems (Not that I know of? Metabolic panels fine so far)
• Abnormal overheating as well as temperature loss problems * (severe)
• Excessive sweating * (severe, especially where lesions are)
• Cannot stay in sun for prolonged periods without becoming ill *
• Drastic body temp fluctuations *
• New, normal temp runs lower or higher than your previous “normal” *
• Bowel habits change, loss of muscle control *
• Stools contain foreign-looking matter * (yes, since starting treatment)
• Urine has foreign-looking matter: particles or black seeds, hair sometimes encased in mucus-like substance (I don’t think so)
• Incontinence * (slight, but may be disc/nerve related)
• Immediate pain that occurs simultaneously to untouched lesions on other parts of the bodywhen another lesion is disturbed * (HORRIBLE)
• Hardened splinter-like material beneath skin that is difficult to remove, extremely painful, and odd in appearance once removed * (HORRIBLE)
• Ingrown hair that is difficult to remove, extremely painful *
• Hair strands that are unusually thick or doesn’t look like other hair *
• Fingernails change shape and/or texture *
• Fiber or thread-like material emerging from the skin, or visible just beneath the skin – may be black, white, tan, clear, red, blue, or rainbow colored. * (yes, except never blue or rainbow)
• Some fibers may exhibit movement (not sure, don’t think so)
• Lyme Disease shares overlapping symptoms and the borellia bacteria with Morgellons Disease – applies to human and animal lab results * (Lyme in summer 2009)

Morgellons Head and Scalp Symptoms
• Bumps, lumps, lesions on head and scalp. *
• Visible “channels” or “tunnels” that look like raised veins on scalp or face. * (I think so)
• Severe and frequent headaches that are confused for migraines. *

Top row- day 6
Middle row- day 5
Bottom row- day 4