I thought Bedbugs were the worst, but Norweigen Scabies is absolute Hell

Greetings to fellow writers and readers at WordPress…

This is not confidential and may be shared with anyone, which is why I’ve decided to publish here at WordPress – my Lantern Timeglass Journal site – this personal report about a significant change in my health and life. Jim Lantern is my legal pen name for the Internet as an independent journalist and science fiction author. My true birth name is James Charles Harwood, born 5 March 1956 in Wichita Kansas, now living in Norman Oklahoma. I will continue to publish here articles on various subjects as I’m able to do so.

I just received a phone call this Thursday afternoon 27 October 2016 from Integris here in Norman, where I was treated last week. The plan now is to refer me to a dermatologist or similar specialist. It was to be a doctor in Oklahoma City, but because of transportation problems it will have to be someone here in Norman and hopefully within bicycle riding or walking distance – 1 to 5 miles from my home [2128 W. Brooks #D in 73069]. Because of how contagious “crusted scabies” is, aka “Norweigen Scabies” – catching rides with someone, or use of city bus or taxicab, are not options. I don’t have a car. The people who treat me will of course need to take appropriate precautions. In-person contact with all people will now be very limited. With a cure unlikely, painful suffering will be long-term.

As I’ve been able to do more research, read more today, the reality of what I have and am facing for my future and day-to-day living has now fully set in.

Doctor Leah Sitton at Integris here in Norman treated me for normal scabies last week and updated a prescription this week. All failed because I have crusted scabies; “the efficacy of these drugs is unsatisfactory in crusted scabies, as they fail to penetrate the thick adherent scales and crusts. Crusted scabies is rarely encountered in clinical practice. It has re-emerged recently…” Further, “In general, the total number of adult mites infesting a healthy hygienic person with non-crusted scabies is small; about 11 females in burrows, on average. Sufferers of crusted scabies exhibit scaly rashes, slight itching, and thick crusts of skin that contain thousands of mites” – and therefore is much more contagious as well as much more painful.

In my case, it’s severe deep pain with surface burning (like sever sunburn) and stinging. Triamcinolone, used in the past for different rashes I had 5 and 10 years ago caused by insect bites, has worked better than Permethrin, but fails for the same reason. I was going to ask the doctor for a number of refills or unlimited Triamcinolone, but it would not be much better than repeating Permethrin for topical and Ivermectin for internal – although Ivermectin has a slightly better chance if repeated but rarely works for crusted scabies. My drug coverage pays for Triamcinolone with co-pay only $1.25. Over the counter Lidocaine reduces pain and reduces redness like Triamcinolone but not for as long – only for a few hours and cost $5.50 for half as many grams, but there is that option in the meantime until something more effective is prescribed.

“The elderly [I’m age 60 now], and people with an impaired immune system, such as HIV, cancer, or those on immunosuppressive medications, are susceptible to crusted scabies (formerly called Norwegian scabies). On those with weaker immune systems, the host becomes a more fertile breeding ground for the mites, which spread over the host’s body, except the face. Sufferers of crusted scabies exhibit scaly rashes, slight itching, and thick crusts of skin that contain thousands of mites. Such areas make eradication of mites particularly difficult, as the crusts protect the mites from topical miticides/scabicides, necessitating prolonged treatment of these areas.”

“Treatment options in crusted scabies are limited and are not satisfactory. Most topical preparations like permethrin, benzyl benzoate, and gamma benzene hexachloride or ivermectin which are used for classical scabies do not produce predictable results as they fail to penetrate the thick and adherent scales and crusts. The active ingredient in [a more effective] preparation is ammoniated mercury which is a white crystalline powder, which when incorporated in ointments, selectively poisons the acarus scabiei. Two types of mercury ointments were available in the past. One called Unguentum Hydrargyrum had 33% mercury, which was used to treat bacterial infections, was too toxic after absorption through the skin, and is not available. The dilute ammoniated mercury (5%) is safe and effective in the treatment of crusted scabies as well as one of the ingredients in an ointment used regularly to treat psoriasis. Clinical manifestation of chronic mercury poisoning such as stomatitis, erythrism, tremors, and acrodynia develop only on prolonged use and has never been reported from local application. It has no systemic effects at all on short-term use. Salicylic acid is a keratolytic agent. It loosens scales by breaking the disulfide bridges between the corneocytes. Alcoholic solution of coal tar is a keratoplastic. Galenicals, as a form of treatment in dermatology, require expertise to prepare the medications. A strong pharmacy back up is essential to prepare medications of good quality” Anyone who further treats me could be in danger and will have to take precautions to avoid catching it from me.

What’s needed now is an actual treatment plan for what, when, where, and by whom [MD or dermatologist], as well as whatever I can do on my own. If referral by Integris is accepted by a local doctor than I should soon have a treatment plan.

When the World Trade Center was attacked, people trapped on upper floors had two choices – burn to death or jump to their death for a less painful end. Considering the level of pain I’ve already had so far, with loss of sleep and loss of appetite making me weaker, this is almost that bad. Even so, instead of killing myself, which I might have considered as a practical logical choice rather than suicide from emotional depression [I’m not depressed], I’m going to try to tough it out as long as possible.

With such a difficult cure, if a cure is possible from extended treatment, I need to look at pain management in the meantime, something that will knock down pain but without side effects (and be covered by my drug coverage); I want to be able to think clearly, not be drugged out of my mind, so that I can at least enjoy some activities to pass the time at home and be able to sleep better.

Extremely contagious, I must limit contact with other people [and animals like cats that can transfer it from me to other people].

As noted already, no car, I’ll continue use of my bicycle and will buy a vertical cart/dolly for getting purchases home from nearby stores when out on foot. No catching rides with anyone, or use of city bus or taxicabs. Interaction with store clerks when making purchases should not be a problem when using my debit card, rather than paper money handed to a clerk. As long as I continue to have it and be contagious, I will not be able to have any visitors in my apartment, and will have to do all or most maintenance myself so a maintenance person will not catch it while working in my apartment. I have cable TV, and Internet to safely interact with other people so I’ll not be totally lonely from being so isolated.

One of the problems is I still don’t know how I got it in the first place, where and when. There’s been no sexual contact since going on Social Security Disability about 16 years ago [after about 25 years of employment], and since then only direct physical contact has been handshake greetings. Person to cat to me is possible, and other things I’ve had contact with that contagious people had contact with. But who, when, where, and what? I don’t know. Scabies mites can live on other things without needing human contact for blood for up to 3 days. Vampires. I thought bedbugs were the worst I’d experienced, but crusted scabies is absolute hell.

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Photo added after first publishing this report. A selfie in mirror with cell phone camera for what it looked like on my back when it got that bad. It now covers most of my back a week later, left arm, and crease at inside top of my right leg. [I’m wearing pants in the photo, just showing my bare back.]

1jimscabiesback

It now looks like a giant red butterfly across my back, with centered dark spots left and right being the nests from which the red rash spreads from and where the crusted ridges are located.

I might add more to this report in the future with edited in updates.

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Additional Notes…

With the worst of it covering my back, I can’t sleep on my back without making it worse, or lean back in my zero gravity recliner chair or any other chair or even a car seat. I can barely tolerate wearing a shirt for only long enough to do an errand or shopping nearby. It’s very much like living with an extremely severe painful sunburn – I got one of those a long time ago so I know what it feels like. Otherwise, with nothing in contact with my back there’s little or no pain. A cool breeze from a fan or air conditioner feels good on it, but must avoid causing it to dry out too much. Taking a shower briefly skyrockets pain, especially hot water, so warm is enough to get clean and then cold water spray to cool it down and reduce the pain. Better to dry it with a fan than to towel it dry after a shower.

The mites have further attacked the outer corners of my eyes, mouth, and nose by forming smaller crusties at those locations, as well as between my fingers.

Eyesight is sometimes briefly reduced so I can’t read normal print even with my eyeglasses on.

Some possible damage to kidneys and liver. Experienced first kidney stones, passing, causing bleeding. Other internal bleeding from ulcers in esophagus and stomach. I’m anemic, at about 8 hemoglobin count, in need of a blood transfusion. There is a hiatal hernia, gerd, acid reflux. I can only take pills by using a pill crusher because of damage to esophagus. Hypoglycemia. Bronchial asthma. An odd wheezing sound from my heart – each heartbeat sounding like a wheezing water pump. Attacks of coughing with some nausea, briefly turning thin skin on my chest and forearms blue – not enough oxygen in blood during those attacks.

Sometimes swelling in ankles and feet with numbness on bottom of feet.

Loss of appetite, down to less than a meal per day. Drinking a lot of whole milk, water, and various juices. Sense of taste has gone wrong – especially proteins tasting bad such as meat. Carbohydrates, fruit, and sweets still taste good.

The center of rash is circular like a cell, or eye of a hurricane, as a nest, and outside of it is the severe redness. The crusty ridges associated with Advanced Scabies aka Norweigen Scabies are only across the darkened skin of the nest, in which the mites live. The nest can begin as a cluster of about 2 inches of tiny white blisters. Topical cream can’t penetrate crusty ridges or hardened white blisters used by the mites for protection. The red rash spreads from the nest.
Use of Ivermectin tablet for internal treatment did not penetrate the crusty ridges and white blisters, and did not reduce the surrounding red rash. Only a washcloth soaked with hot water and used like sandpaper takes off crusty ridges and white blisters, leaving the more sensitive tissue below exposed with profuse bleeding. Then the crusty ridges are quickly rebuilt by the mites. As I applied Triamcinolone Cream I witnessed creation of new white blisters below it to protect the mites. It then becomes very labor intensive using the cream and the hot wet washcloth to battle and kill the mites. I spent 10 hours nonstop (but for 10 to 15 minute breaks each hour to rest) doing that, taking away their protection and applying cream before than can rebuild their protection. Generic of Gold Bond Medicated Body Powder on top of the Triamcinolone or Lidocaine helps to reduce the pain, maintain dryness, and make it possible to sleep – and there is more healing during sleep than while conscious and active. None of this is a cure. I’ve not been able to destroy nests and prevent some crusty ridges from being rebuilt. So I’ve been able to reduce it. The infected skin does have an odd smell kind of like oranges or some other kind of fruit going bad.
The attack began with two areas of clusters of tiny white blisters, one in upper left back and the other in upper right back. The crusty ridges appeared after the skin darkened in the nest and was then surrounded by red rash mainly spreading downward. The mites have the ability to move the nests, and direction is downward on my back as if pulled down by gravity. When I broke up one nest, the mites built a new nest further down. The mites spread to my arms when my arms came into contact with the infested skin on my back while reaching back there to apply nonprescription creams first tried. One other area appeared in the fold of my skin at top inside of right leg. There, and at my underarms, the mites created fissures in the skin so severe that a stitch might be needed to put the skin back together like of a deep cut, making healing otherwise impossible.
Source of the mites is still unknown. 5 and 10 years ago I had similar attacks but both of those came from insect bites and were knocked down by Triamcinolone Cream within 3 days. Since going on Social Security Disability about 16 years ago [after about 25 years of employment], there’s been no sexual contact with anyone, and physical contact has been limited to handshake greetings. The mites can spread from human to cat to human, and that has been suspected this time, as well as insect bites. The mites can otherwise live up to 3 days on clothing and other surfaces during and from which transfer is possible. Perhaps even from the handling of paper money handled by others who are infected. I doubt mites can live in drinking water, but this problem also began when Norman water began to stink and taste bad again, my PUR water pitcher filter failed to stop it this time, and I bought a lot of bottled water for drinking. Likewise, bags of crushed ice purchased suspected of causing skin irritations when I stopped using ice trays filled from kitchen sink. Further, clothes that had been washed in the stinky Norman water then itched when worn, as well as having itchy skin after taking a shower in the stinky water. I believe cleaning everything in my apartment has eliminated mites from infecting me from those things, but keeping apartment clean of mites coming from me will be a constant battle.

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One thought on “I thought Bedbugs were the worst, but Norweigen Scabies is absolute Hell

  1. Mr. Harwood, my sympathy and prayers are with you. I’ve never prescribed the following for crusted scabies so I don’t know if it will work. But the propylene component “may” have the ability to penetrate crusted areas. Moreover, permethrin and other topicals can have serious toxicologic issues with repeated use, as can ivermectin. In any case, this may be worth a try:
    1. Find a skin lotion containing propylene glycol (or buy some prop. glyc. at a pharmacy and mix with a skin lotion).
    2. Combine about 7 tbsp. of lotion with about 1 tbsp. of common turmeric powder.
    3. Mix in a small amount of lemon juice so that the final mixture is not quite watery.
    4. Test first on small area of unaffected skin for possible undue irritation for a day or two; if strong irritation, then do not use.
    5. Using a long-handled spoon covered with a single layer of gauze, apply mixture to gauze and pat on affected areas on back. Let dry. Repeat after each shower. Will stain clothing and bedding; also stains skin but should go away a few days after discontinuing use.
    I hope this helps.

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