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.
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.]
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.
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.
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