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Thread: Introduction - Is there anyone else her that has total body & scalp Demodicidosis?

  1. #1
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    Default Introduction - Is there anyone else her that has total body & scalp Demodicidosis?

    Hello! I posted this in NEWBIE as well, but there seems to be no action...I just want people to see this and maybe find someone like myself, so I can have somebody to talk to about it.

    I'm totally new here, but not new to Demodex.

    HISTORY:
    Short version: My problems started in 2008 - after importing a c.at from an Eastern European country. All my c.ats got some scratching disease from this new one. After searching the internet I found out that it could be Demodex. Treated them all with lime sulphur wich was recommended. I also visited a dermatologist vet. She found nothing, but suspected it was Demodex. Gatoi.

    My problems started at one cheek, it was slightly red and scratched. By time the skin went from soft to hard, like sand paper and the pores was more wide.
    I visited a dermatologist and they took a tissue sample. It showed Demodex. However they never looked for what species.
    I told the doctor that I suspected that I got this from the imported ca.t. Because it started then and all the other got the same problem.
    The doctor almost laughed at me, said that was impossible. I asked her many questions about treatment, medicine from abroad etc. (my country did not have any oral medicine) and she only said that I was inquisitive.

    TREATMENTS and SPREADING:

    During the first year (2008-2009) I did as the doctor told me and treated with Metronidazol creme 1% (she refused to give any higher). And some other cremes and ointments. The only thing the Metronidazole did was to reduse the obvious bacteria that comes along with Demodex and gives secendary infections in the skin. And it made my skin very dry. I also ate Tetracyclin.
    Unfortunately the Demodex started to spread! First to the other cheek and chin and down on my throat. Later on also at my chest and neck, topp of my back and in my ears. I got it in my eyelashes with extreme scratching and loosing eyelashes, also blurred view and some red eyes. Also got it in my eyebrowns.

    I started to panic and searched the internet for info. Tried Tee-tree oil and it could absolutely reduce the itching but only temporarily. My scin seemed clearer with this treatment so I continued with it. I put Metronidazol at my eyelashes with eyeinflammation as a consequense. Time went by and the problem spread lower on my back, lower at my chest over to my breasts and the top of my belly. It suddently showed up at my hips and thigh - and this I think is because of me first scraching myself where the Demodex were and then I touched myself when asleep. And it showed up at new places far from the "source".

    I tried to go to several dermatologist doctors - without any success. Only different cremes that did not help.
    I contacted the first doctor again and cried for help. I said I wanted to have licenced medicine from abroad, called Ivermectin. I had read at the internet about this medication, and that some persons had been helped. I also had found proof that a person had been infected with Demodex from a dog!
    The doctor ignored me, said it was impossible to get it from animals and it was impossible to get an oral medicine. And said she could give me more Metronidazole.
    I went to "ordinary" doctors and asked to be helped, they could not help me. I got Metronidazole orally from one doctor and ate it for 14 days without any success.

    I also got it in my scalp!

    During the years from 2009 until 2011 I have used a product called Tenutex (Sweden) with Bensylbensoat and Disulfiram. This was giving the Demodex a serious bang, the itching went away temporarily and the skin went much better, but not cured in any way. The sandpaper skin was still there, worse than ever and I had it on both cheeks at this time. I also used Tea-Tree oil in periods since I have noticed that it was helping less and less.
    I used 43% Isopropylalcohol all over my scalp to try to calm the itching! I also used it at my face and body. Often they reacted with this and came out! So I did it several times in a row. When I scatched I always or almost always got something under my nails. White or transparant little corns, or oval longer things.
    I used Tigerbalm and this could absolutly reduce bumps, but it burned the skin as well if having it too long.

    Often they made bumps and when I scratched it accidental or purposely the skin just broke and under it I could see a big crater with a hole in the middle. I could go in months with these kind of red bumps, in my face, chest, neck, throat or back or leg. They never dissapered.
    I learned that if I got the "white" in the middle out, then this could heal fine, but with a scare. If I did NOT get all the white out, then it never healed or only superficially and broke easily again.

    In 2011 it was worse than ever. It itched so much that I could not have my hand still for more than a few seconds, because it itched somewhere all the time. It did not "only" itch. It crawled. It stung all of a sudden in the scalp or skin. Like a giant mosquito. If you have a loose hair in your face or somewhere you can feel how it tingles. This was also very common. And a feeling of bubbling in the scalp, or that someone was "moving" a strand of hair.

    Now I also had it in my anus...

    I seriously considered to die. I thought of the possibility to get euthanasia (death help). However I didn't want to, and I have children, I just can not! But I could not live with this life either!

    IVERMECTIN TREATMENT

    So in 2011 I was so desperate that the doctors finally took me a bit more serious. I could not speak without crying. I told them that I had considered to not live anymore. I was back at my first clinic with papers written out from the internet - proof of the person that got Demodex from a dog, and papers with success treatments of Ivermectin. I got to meet with my doctor's colleague, becasue my doctor was sick this day.
    This doctor helped me get Ivermectin with license from abroad.

    At the same time I was at my county's best university hospital, I met a very good doctor that promised me they would help me. He said that at this hospital we have science and we are INTERESED in knowing. So of course we will take samples and look for what parasite this is, what species and then we will treat it. He also said that his colleague had experience of a patient been infected by a dog with Demodex!
    I was soooo relieved! Finally a doctor that BELIEVED me, and he would help me to find out what this was. After all the only test that has been made was in 2008 and only a tissue sample. After that I had problems in scalp and over the most of my body, was it the same or was it something else. Or both?
    The only problem was the bureaucracy he said. He could not take the tests, becasue he was a infection doctor, I needed to go to a dermatologist. So he wrote a referral to a new dermatologist, the best at this hospital.

    When I got there, I told her my story. She found me to be hypochondriacal, delusional and God knows what. This doctor had no knowledge of Demodex at all. Only that it was a skin disease that was treated with skin lotions. What they did in America or in any other countries did NOT interest her. She offered me to come to the "day clinic" to learn how to lubricate myself with cremes in my face. I was obviously talking to a wall... I really tried my best but she had already made up her mind about me and my problems.... She made no tests whatsoever! She could not she told me. She didn't have the possibility and she didn't see any point in doing it. So that was that with Sweden's best university hospital!

    I finally took the Ivermectin medicine. 4 single dosages, with 1 week apart. ( I accidently got more medicine than I should have) with 200 μg/kg body weight.
    I was so nervous it would not help, but I hoped so much that it would.

    First nothing happend, than after 2 days I got very much itching! EXTREME itching! And they was all over me. I got shocked because if they was supposed to die from the medication how on earth could they crawl around at my scin!?
    It calmed down....then I took the 2:nd dosage and the same thing happend. My heart sank.....
    However, I started to feel my skin getting more soft!!!!!!!!!!!!!! After 2 treatments, I acctually felt that the sandpaper feeling had disappered!

    I used the 3:rd and the 4:rth dosage and I could notice that my immun system was being hurt. Before I had been having problems with Candida in my mouth and guts and now that was much worse.
    The ithching did not disappear during this time, it got worse at every dosage. But less intense for every time. I also used Bensylbensoat and Disulfiram at the same time I took the medicine. Didn't want to risk anything. Did everything I could.
    I also used Sulphurated Lime (Lime Sulphur) at one time (24 hours) all over my body and scalp.

    After this I went to a health clinic and made a bowel treatment from the inside, with herbs and super foods. Anti candida and anti parasites. It was 1 week long. This was to help the immunesystem. During this time I still got small bumps and I treated with Tee-trea oil.
    My candida dissapered, but my Demodex did not.

    The Ivermectin treatment saved my skin from the hard and sandpaper structure. It was again normal and I was happy for that. However, it waas clear that the Demodex or what ever it is, was not totally gone. It had been loosing a war, but it did not die....

    2012 - TODAY!

    After that the problems slowly, slowly started to came back. The ithching and the scalp was improved but the bumps came if I did not treat myself with something. I used Tiger balm and Tee-Trea oil (also in shampoo etc) and alcohol on a daily basis, but different all the time. I noticed that it helped less and less.... From time to time I had to use that awful Bensylbensoat and Disulfiram treatment to get some silence (less itching). But before it had helped for several months, now only - weeks.

    Today at writing moment I have this EVERYWHERE, in my scalp, in my ears, in my NOSE, in my eye lashes, eye browns, face in total, whole body except my feet. AND in my vagina and around also in anus....

    I have no more ideas, I am desperate. It has now started to itch alot again in my scalp, nose, anus...face, ears, everywhere.

    I can not live like this, I can have no social life.... But I WANT to live and have a social life!

    PLEASE, if you have the same problems write to me!
    If you have successfully treated yourself please write to me immediately!

    Thank you for listening.

    /Cazini

  2. #2
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    Wow, it sounds like you have had a long and difficult journey, thanks for sharing with us. Have you tried to get the doctors to give you more Ivermectin, it seems like that helped for a while. You could also try topical Ivermectin, there are several threads about that on this site.

    -Dave-

  3. #3
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    Cazini, where do you live?

    I agree with Dave that you should try topical ivermectin.

    Also you should try taking 20-minute-long soaks using hot water (but not so hot that it's unhealthy!!) and a cup of hydrogen peroxide or 2 cups of borax or Epsom salts or Dead Sea salts.

    If it's all over your body, though, it sounds like scabies rather than demodex. But both can be exterminated with ivermectin since they have a similar structure.

    It's important to use the ivermectin (topical) at night when the bugs are active. And it's important to change your bedding daily and wash it in very hot water with detergent and borax (or bleach) and dry it until it is crisp. Same with your towels.

    Also, follow the super-low carb diet that is discussed in this forum, too.

    For your scalp you can put tea tree oil on at night or ivermectin (I'm talking about the liquid ivervectin -- not knowing where you live, I don't know what you can purchase). You can ALSO put tto on your scalp with conditioner when you do your soaks.

    For your eyelashes and eyebrows use castor oil at night. (You sleep with it.) Apply the same way you would make-up with a clean cotton swab (cotton bud) every time you dip into the bottle and touch your lashes or brows. It might sting at first, but as you heal it will simply be soothing.

    P.S. don't let the ivermectin near your cats.
    "It's all illusion anyway."

  4. #4
    Senior Member Brady Barrows's Avatar
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    Cizini,

    Your report is noteworthy which I have added to this post under the subheading, Anecdotal Reports. There have recently been reports issued from Medical News Today, WebMD, Allure, etc., about an article published in the Journal of Medical Microbiology, entitled, The potential role of Demodex folliculorum mites and bacteria in the induction of rosacea, which has gotten a lot of attention. In the past, doctors and others have dismissed the role of demodex as an 'innocent bystander' or a passive factor in rosacea. However, the evidence is becoming massive that demodectic rosacea is as valid a variant of rosacea as any other proposed variant. There are reports that demodectic rosacea can be controlled but reports of remission are rare. Treatment may have to be ongoing or re-introduced after temporary remission of symptoms. For more info click here. If you keep seeking like you are you will find a way to control it. It is not hopeless, there are many who report successful treatment. So don't give up, keep looking for the correct treatment. Gabranth's thread in this forum is a good starting point.
    Brady Barrows
    Blog - Join the RRDi



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    Hi Cazini,

    I relate an awful lot to your post. I too am convinced that demodex are at the root of my issues, and I too have often felt that I'd be better off dead - those of the depths of misery that this thing can cause.

    We can only hope and pray that, as Brady mentions, the mounting evidence will filter through and influence the thinking of front line doctors sometime soon, so that we aren't so often treated as being barking mad!

    For me personally, I also believe that I have demodex in various other locations. However (apart from itching) it is only on my face, and more specifically my nose, that they cause a very obvious problem.

    I had an interesting experience some months ago - for a while I attended meditation classes, which involved sitting still for upto 45 minutes at a time. The vast majority of the other people in the group were able to sit completely still (ie without scratching/touching themselves!) throughout, whereas I was almost constantly battling the urge (and often losing the battle!) to scratch myself, most often on my face or scalp, but also other areas such as my legs.

    Made me think there had to be a reason...!

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    Demodex are thought to feed on sebum. The glands on my face and eyelashes seem to produce the most sebum. I have demodex on my scalp too, also behind my ears. Once in awhile I get a pimple on my neck and upper chest--so they go there too. I've started applying neem oil after a hot shower and using neem oil soap. I hope you get better.

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    Have you ever considered Psoriasis?? There are many sub-types that can affect the skin, body-wide.
    Shantelle

    31 Year old female from NZ

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