@RecoverE how is your oral metronidazole (finished) + Soolantra treatment going?
With permissions of Misfit108, I have renamed this topic to “Main topic”, because it has become a bit of a main topic. Having a main topic may also make some discussions easier.
Btw last week, I have emailed the author of a demodex study about the possibility of this being a new form of demodicosis, and replied with:
The best way to confirm the suspect diagnosis of demodicosis is to do a skin biopsy or to conduct a reflectance confocal microscopy examination. Soolantra is not only anacaricide but can also suppuress inflammatory reactions.
So the positive effects that most of us have while on a treatment that has Soolantra in it, doesn’t mean that demodex is causing the problems. (Something we already knew.) But the long lasting effects that the two success story users experienced, may indeed suggest that demodex is the cause.
Although in my case, I likely have a lower amount of demodex than what would fall under the category of demodicosis (which is more like >5 mites per square cm) (unless the method that I use isn’t precise enough). But I still have my aim/theory at demodex.
Last Friday, I went to a new dermatologist (my third derm, and 5th doctor). He owns a large skin disease website himself, were he documents all kinds of skin diseases, including demodex. (Which tells me that he has a passion for dermatology.) Although I didn’t had a clear oozing lesions, so he couldn’t tell much, also based on the photos, he couldn’t give a clear diagnosis, although he did say it could be a combination of things.
Different dermatologists have different approaches of solving problems, some like to experiment easily and use a trial and error approach with medication, some take their best guess and follow the standard treatment for that guess, and some like to examine and base their actions on what they clinically observe. My current dermatologist probably falls in the last category.
Because of Soolantra, I didn’t had lesions that I could associate with oozing, (although I did had some frustrating nodular acne pustules that suddenly appeared about two weeks ago, and were slowly subsiding. Still wondering whether this may be somehow related.) But he did took a sample of a white head on my forehead on a glass slide for microscopy.
Like the author about demodicosis, he said that due to the anti-inflammatory actions of Soolantra, it would supress the symptoms. So I have to stop using it, to get a oozing yellow lesions back, and then he can examine samples of it. Fortunately, he said that I can go back to the clinic within a day without making an appointment.
With some luck, maybe Soolantra really killed the cause and there won’t be any new lesions. I’m planning to stop with Soolantra on Tuesday.
Hi, while I agree with you I just want to add that the anti inflammatory effect of soolantra might not be very “high” cause I sometimes have a small red area on my face (due to dryness so should be eczema-like) and it hasn’t really been affected by soolantra. By that, I mean I don’t think it would have suppressed oozing lesion by anti inflammatory effect, just to leave my eczema intact (which should be affected since it’s 100% about immune system).
And since demodex usually live inside the pores, maybe you have missed the biggest part of it?
Anyway let’s continue our researches altogether!
Hi! New girl here. I can’t tell you all how relieved I am to find this site and all of you. I nearly jumped up and down when I saw the pictures. I’ve been suffering from this mysterious affliction for ten years now. Like many of you, I have been to the dermatologist several times and my primary Doctor more times that I count. Prescribed antibiotics, acne medication, topical and internally. Nothing helps. BUT I’m so excited to try the ivermectin medications that a couple of you have seen results with. I’m still waiting for my doc to get back too me…if she does. Also, I have been taking apple cider vinegar twice a day and I started mixing tea tree oil with my facial moisturizer. I have to say I see an improvement! All crusts have dried up and there are no new ones. I usually see a new one just about every other day. So this is BIG for me Anyways…thanks so much for being here and fighting the good fight along with me
Welcome. I am happy you found us. I, too, for two decades thought I was the only person living through this terrible nightmare. I am happy you are trying the apple cider vinegar treatment. I, too, tried this buy it laid waste to my skin and it was so bad that I would not have been able to continue to go to work and support my family. I would love to have a few weeks or a month to try and see if I could go the distance with ACV. You might find some real useful info on people’s victories and defeats with ACV here: http://www.earthclinic.com/remedies/acvinegar.html and also http://www.acne.org/vinegar-as-a-topical-reviews-30/
For about 9 months, I’ve put a lot of time, effort and money into going the natural route. I’ve seen naturopath/holistic doctor a couple of times and tried different remedies. I’ve also had all my mercury fillings removed from my teeth. I’ve trimmed my diet down to no dairy, no white grains, no red meat and no nightshade vegetables. These are a lot of the protocols used in treating eczema/psoraisis but they don’t seem to help me with the dreaded yellow ooze and my skin is still super dry no matter what I do. I would love for a natural remedy or a diet change to cure me of this curse, but I don’t believe it can happen. I think for most of us, there is something that genetically predisposes us to the yellow ooze. Next Monday, I am meeting with a dermatologist to begin taking Soolantra. Since I have the problem very severely on my eyelids, I may try taking it orally also if she recommends it.
We are all happy to have you on board. No one can understand the nightmare of yellow ooze better than us. Please share your progress and ideas.
I’m also currently doing the oil pulling thing. Really I’m willing to try anything at this point. I’m attempting to get a prescription for the Soolantra and the internal ivermectin med. no luck yet. I called my doctors office acouple days ago with a request to give this route a try. The nurse called me back and pretty much had never heard of demodex or any skin condition possibly caused by it. She said she would pass the message along to the doctor. No call back yet… In the meantime I’m trying all these natural remedies. I should correct my earlier post. I’ve had this for more than 10 years now that I think about it. More like 15
@misfit108 note that Soolantra did remove my eye lids problems (mild blepharitis) even though I wasn’t applying it on the eye lids.
@Dm78 doctors are probably reluctant about demodex treatments when the patient mentions demodex, because 1) they often don’t much/anything about it and 2) it’s pretty easy for a patient to blame demodex for a skin problem.
If your doctor isn’t easy in prescribing meds, than it may be easier to get a prescription when you only ask for Soolantra instead of Soolantra+oral ivermectin. Also note that oral ivermectin may not be very effective compared to oral metronidazole (although the later has more side effects). Also, Soolantra (topical ivermectin) may maybe also be more effective than oral ivermectin, although this is just a rough guess, but an oral med may not necessarily be better than a topical one.
To convince a doctor to prescribe Soolantra, I would try some argumentation like this:
- We (you and the doctor) don’t know what it is (if the doctor cannot give a clear diagnosis), there may be multiple suspicions, but…
- nothing really worked; I have been given multiple prescriptions without any success
- but now I finally found a resource on the Internet that exactly matches the problems that I have, the photos are exactly the same, there stories are the same, which I haven’t seen before on other medical websites. The patients on that resource have seen dermatologists and those that have been given Soolantra/oral-ivermectin/oral-metrinodazole have a high success rate.
- I don’t know whether this will work for me, but given the large resemblance of what the other patients have described and shown, and the high success rate that they had, I would at least want to give it a try.
Maybe it’s even better to not mention demodex at all, because it may trigger alarm bells that the patient is simply blaming demodex for it, or that the patient has some mild form of delusional parasitosis.
For more info about the treatment, see The Best treatment
What part of the country do you live in? We might be able to help you find the right doctor.
Where I’m at right now, my primary doctor doesn’t know anything about demodex. But she is backing up the fact that I have done research and that I’ve collaborated with some people online who have the same rare disease and who are seeing results with Soolantra. I have been referred to a dermatologist next week. If the dermatologist is not willing to give me Soolantra, the primary said she will prescribe it to me. In my case, I can present the facts that I’ve tried absolutely everything except Soolantra. You will face doctors who won’t give a prescription because it would mean that you, the patient, know more than they, the highly-educated doctor, know.
Hello! I would like to recall my own experience about tea tree oil mixed with moisturizer !
Like you the first week I was seing an improvement, but later it got worse and worse!
The skin finally got more irritated and more oozing than before!
So just an advice, beware with this
Did this worsening involve oozing yellow crusts? or only irritated skin?
Did you mix it yourself? Under what concentration?
Gluten free ? or a treatment with honey?
This worsening involved both oozing yellow crusts and red/irritated skin!
I mixed it by myself: one drop of tea tree oil every morning in my moisturizing cream.
I have to agree. I did a 1:2 ratio of tea tree to jojoba oil. My face exploded. I endured it for about a month, but I was ready to drive my car into a wall almost every day I was that stressed. As soon as I stopped the tea tree, my skin became the best its ever been for about a week and a half before the oozing came back.
I live in Western NY. I have been referred to a different dermatologist than I went to previously. I’m trying to avoid going to the dermatologist again because it takes months to get in and it is crazy expensive.
Ok you guys are scaring me. I had such high hopes for the tto
It shouldn’t be this hard to get a doctor to listen to us / me. I guarantee I know more about this condition and what could possibly cause it than this nurse practitioner (she isn’t a docor actually). I research this stuff like its my job.
Everyone’s skin is different. Some people have luck with apple cider vinegar and tto. Some people swear borax and hydrogen peroxide taken internally and applied topically can beat it. We all have to conduct our own trial and error experiments.
Would love to hear your full history with the yellow ooze… how old you were when the problem started. What triggers you’ve identified. Feel free to share it if you’re comfortable.
I also had a bad breakout when using pure tto, but it should be diluted (as the others did).
There is a theory that killing demodex will result in a temporary worsening/breakout, but the difficulty is that you don’t know whether this is the case or whether it is really an ongoing worsening.
If it is an ongoing worsening, then the question is what is causing this worsening. One hypothesis could be that it (tto in this case) is weakening/aggressive on the skin possibly causing the problem causing bacteria inside demodex to be able to take advantage on the weakened skin.
It could also be a combination of these hypothesis…
Although those that used topical Soolantra and got good results, often don’t mention a breakout.
Sorry for the lack of updates. So the soolantra definitely reduced my problem down a lot. Breakouts are not daily anymore and if so its small and heals fast without anymore oozing. The only issue from now is that my brother is now displaying the exact same symptoms.
The last time I had mentioned to my last dermatologist that I think my condition is contagious is because my brother was showing signs of some similar symptoms but no way as bad as I was having. Now today he has a red bump that formed a wound oozing a clear yellow fluid.
It’s very concerning to me now. I feel as though when I run out of soolantra this skin problem will come back because I tend to not use it daily any more, every 2 or 3 days as by the third day I start breaking out again…
I tried to change my diet but to be honest it only lasted about a week and I went back to my old ways but much worse, much more smoking and drinking etc which I need to change to see if healing through my gut might change anything but that takes time.
Here are some things to consider. It’s probably not contagious, it’s just that you and your brother… like many of us are genetically more likely to have this problem. I’ve been married for 12 years and neither my wife nor my kids have ever had even the slightest sign of this disease.
I think you’ve got to do your own tests as far as diet works. I’ve read things where people heal similar conditions by changing their diet. I tried eating only fruits, veggies, white meat and brown rice forever. It doesn’t matter. My skin is still dry and crumbly and always breaking out. If I don’t put lotion on right away, my skin looks like a mummy right away. But you have to walk through the fire of trying diet restrictions to know what will work for you. I’m just starting Soolantra now and if it keeps the oozing down, I will keep putting it on every day. I don’t know how people in the past have lived their entire lives with this condition. It can drive you insane.
Maybe your brother should also use Soolantra?
Also make sure that he really has something that is similar to our photos and descriptions, and that it’s not a slightly different form, like impetigo.
Just in case, you may want to minimize the use of shared towels, bedding and such, and was hands regularly.
About diet, having a bad diet may make the symptoms worse, although I haven’t seen a clear relation in my case (maybe the symptoms are delayed for some days, making it difficult to make a clear relation). But I do think, based on my own experience, that a bad diet has effect on acne. (Note that I have a normal/healthy diet, with maybe one junk food day per week.)
- Looking back, do you think that metronidazole has any effect, or difficult to say because you were using Soolantra at the same time?
- Does your brother live in the same house?
- When did the first symptoms appear at your brother? (Before or while using Soolantra?)
- When did you stop using Soolantra on daily basis and started skipping some days?
- If I understand you correctly, when you stop using Soolantra, you are getting breakouts again/increase in symptoms at about the 3th day?