Cured! I hope this helps someone.

We are cured...after over 6 months of misery that only those with this plague can understand. We would never want to go though that again, and I decided when I was going through it that I’d write something that might help others. I feel terrible for you all because I can’t imagine much else that causes the type of physical and emotional trauma that unrelenting scabies does. It’s like living a nightmare.

     My husband and I contracted it from a cat that had scabies mange. We were told not to worry because it could not transfer to humans. They were so wrong. Only one vet acknowledged that we could catch it, but that was long after we had developed the rashes on our arms and stomachs, and eventually all over. (I hope this doesn’t discourage adopting cats, because I’d still do that and I continue to love cats.)

     I won’t go into the details of the cats, our obsessive cleaning, the hopelessness, weight loss, isolation, fear, shame, or the many dermatologists we saw, because you want to know the details that can help you. But I’ll let you know the cats came out fine in the end.

     First off, you should know that the itching, rashes, stinging sensations, and bumps do continue for a very long time after the cure. They continued for over 2 months for my husband, and almost 9 months for me. But as time went on they became fewer and smaller. I have more sensitive skin than my husband, and used more products while we had the scabies. Also, my husband received light treatments that helped heal his skin after we were cured. Now, 18 months later, the bumps and rashes have long subsided, but I’m still itchy on my face, scalp, and torso. I still get a random stinging sensation where the scabies were the worse. I get especially itchy where there is anything putting pressure on my skin, or even a hair touching my skin. And the itching does feel like crawling sometimes, especially under the waistband. I think it’s from nerve damage from all the products we used. (See discussion about “nerve branching” below.)

     I had a hard time believing the doctors when they told us we were cured because the symptoms continued to be so much like the disease, and I was sure they were wrong. They would not do a biopsy to confirm the cure, which would have helped tremendously. So my advice at this point is to INSIST on a biopsy, scrape, or both if you are told you are cured, even if it means switching doctors multiple times to get what you need. And even if it means paying for it yourself. The peace of mind it will give you is worth any amount of money. And if you’re still not convinced, insist on a second or third biopsy. Doctors can be intimidating, so be strong and insist, or go to a new doctor who will help you.  We had to go outside of our insurance for help. The cost hurt, but getting or lives back was worth any cost.

     Treatment lasted about 6 months consisting of the permethrin cream and Ivermectin tablets. We did the permethrin treatments over about 4-5 separate times, which resulted in well over 15 full-body treatments for each of us. It’s hard to remember the exact numbers. We did the prescription Ivermectin tablet treatments 2 or 3 times.  We continued to have the scabies after months of treatments, and it may be because the cats were isolated in a bedroom, but still needed daily attention so we continued to contract it from them. They were also being treated and we were being very careful (gloves, antiseptics, etc. ) but it wasn’t until a month after the vet agreed to board them in isolation that we began to see some improvement.

     By improvement, I mean that we began to notice that we could sleep through most nights without the terrible night itch, even though bumps and some rashes continued. And at this point (6 months into treatment) the doctors began to say that we no longer had typical scabies symptoms. They said our symptoms were most likely just residual itching, bumps and rashes from having had scabies, and from all the treatments. But it was almost impossible to believe them because things looked the same to us, and the itching had that crawling feeling that you are probably familiar with.

     Eczema looks just like a scabies rash. Look online and compare. We were told that the eczema rashes were caused from the harsh scrubbing and the chemicals. Eczema happens when there is a breach in the skin’s protective barrier that causes inflammation. It is also very itchy. Even though there were rashes, there were no longer any tracks. It was at that point that we decided to stop the permethrin treatments and try to believe we were healed. And 18 months later, I can say that the doctors were right. We had been cured.

     WHAT WE SUGGEST YOU DO: See professionals right away. We were afraid to use permethrin and Ivermectin because they were “poisons.” But because we delayed for months and tried to use other “less harmful” treatments it allowed the scabies to take hold on us to the point that it was absolutely everywhere on our bodies. I think it was more difficult to get rid of because we delayed and had so much of it by the time we saw doctors.  Also, if you know it was from an animal with scabies mange, you must find a way to board them in isolation at a vet, so that both the animal and you can receive treatment and get better. Call around until you find a vet willing to do this for you. The medicines DO WORK if done correctly as long as you don’t have a secondary source of infection. Be sure to include scalp and face in your treatments, as we had it in both areas.

     As far as cleaning, I cleaned and did laundry (in the hottest water with borax and bleach) from 5 in the morning until bedtime each day. Sheets and towels were washed each day. I followed the strictest guidelines. I don’t know why, but it didn’t seem to make a difference, and I was exhausted. I used every suggested cleaning compound on the internet, including hundreds spent on enzyme cleaners and hospital strength products. I wore gloves all day. The cat room was cleaned in the same manner while they were still at home receiving treatment. I have no advice in this area.

     WHAT WE SUGGEST YOU DO NOT DO: If we had to do it again, we would not use the homemade formulas that you read about in these groups. We smothered ourselves in sulfur formulas, mixtures of DE, mixtures using clove oil (very potent),  oil mixtures, orange oil formulas, borax/peroxide mixtures…we tried them all. We still can’t get the sulfur smell from our clothes and bedding. We scrubbed our skin with a brush when we showered. We took daily borax/peroxide/epsom baths and lots of enzyme baths (enzymes do not work). I even learned to make permethrin mixtures from recipes online. I used a diluted permethrin mixture to clean the house and spray the carpets. We did extra permethrin body treatments using the homemade formula found online. Do not do this.

     We did the Ivermectin horse paste treatment you can find online. Do not do this either! It’s nearly impossible to figure out the exact treatment amount per pound for a person. Remember that it is made for a horse that weighs well over a thousand pounds. And I’ve read that the amount of Ivermectin varies throughout the tube, so that the small portion of the tube that you take can have much more or less than you think you are measuring. It is dangerous. One of the doses cost me an ambulance trip and time in the emergency room, not to mention the embarrassment of having to explain why I’d eaten horse paste.

     I can’t say for sure, but I think the over-use of the permethrin/Ivermectin, in combination with the other formulas, caused nerve damage. I found some research discussing a term called ‘nerve branching’ that causes the nerves to form extra branches to the surface of your skin. This causes skin sensitivity and itching that can last a very long time. I believe I’m still experiencing this, and I blame the over-use of these self-made formulas and the excessive permethrin use. Fear can cause us to do irrational things.

     This is all behind us now, and it will eventually be behind you too. Don’t stop believing that. Don’t worry about what the doctors think of you…keep up your fight for your healing. You WILL get your life back. We were told time and again that there are no resistant scabies, and that permethrin almost always works if you aren’t being re-exposed. If only we had believed that, we would have avoided months of extra fear and treatments that further damaged our skin. Try to believe that too. I won’t be checking back on this post even though there may be questions.  But I don’t have all the answers. And it is hard to remember all the details from over a year ago anyhow. I continue to pray for all of you going through scabies. Don’t forget to pray for yourself too. God will hear you. May God bless and heal you and help you get your life back soon.

Catheryn, USA

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