New to forum/FD - Really confused.. ... 
Bredpitt
15 y
24,796
† Cross †
Hello fellow's.
I'm a 27 year old male from Norway. Anyone else from Norway? or close?
I found this forum a couple days ago and have found many interresting "cure" that i am going to try out.
First off all i am going to shave my head, firts with an electric raser since my head now have alot of pustuls and bums.Also i have got a lot of acne, and small wound's in my skin.. mostly acne based.
I have never had this before, could this come from antibiotics? Kortison or steroids ?!
i have a LOT in my face.I start having the FD trouble about 6 month's ago but the doctors gave me the diagnosis the day before christmas day 2008... what a great suprise.
However the docotors also say that it's chronic and may be a very hard disease to get rid of.. it could take years to decades... did not acutally cher me up.
Now i have been on Ery-Max and Dalacin antobiotics for about a month but it has not done anything to me.. or it done something.. it gave me fungus..So i stopped to use the antibiotics now, also see here that most people say i should not so i think i will drop it.
Anyway, i will try to shave my head for start.
Next week i will also go see a doctor that is known for very good laser hair removal and discuss with him if hair removal could have any affect.
If the shaving have any affect, probably the laser hair removal also will.This disease have turned my life up-side down because it affects my sleep.. it hurts, i can barely sleep for 2-4 hours.
I can not do my bussiness very well because i dont have enough energy...
and i can not travel to my partners world wide because i personally think i look like a freak.. right now.
No work - No income.. or less income.. i still have two employee, but me working so little is not any good for my income.Also i can not see that i would be that interresting in the dating market anymore...
Very lucky for me i have a very special girl, that supports me... and i actually met here after the desease started 6 months ago... so mainly.. sha was not only looking at whats outside... and that have helped me alot to help me, because depreccion about this might would get stronder without her..Here you can also see some picture's off my bad nightmare..
More
- Re: New to forum/FD - Really confuse... UserX
15 y
24,414
MoreThis is a reply to # 1,347,977Bredpitt,
I cannot imagine how you must feel right now. A condition of this magnitude must be quite alarming. However, looking on the positive side of things is what I would recommend. I don't suffer from your condition but I also have a chronic skin condition. Looking at your pictures I question the diagnosis of Folliculitis Decalvans. It looks to me to be a case of dissecting cellulitis, a member of the follicular occlusion triad and a scarring alopecia that shares some similarities to FD. Did the doctors perform a scalp biopsy? The comment about having Acne on various parts of the body would support the diagnosis of dissecting cellulitis as it is related to body lesions i.e. Hidradentitis Suppurvita, and Acne Conglobata (sp?). Anyhow I think you are on the right track in seeking a laser hair removal specialist. Much of the literature shows complete resolution from follicular destruction procedures. Follicular xray epilation seems to be most effective but carries with it certain risks see here; http://www.ncbi.nlm.nih.gov/pubmed/15840113?ordinalpos=2&itool=EntrezSystem2....
Talk to your doctor about it. You would have to give up your hair, but it seems like that is a small price to pay for resolution of the disease. Additionally you look good bald, so what's the big deal right?
Good luck
More
- Re: New to forum/FD - Really confuse... Bredpitt
15 y
23,291
This is a reply to # 1,348,635Advertisement
Natural Weight Loss
Remove toxins from the body, restore digestive function, lose weight and keep it off.
I have not got an complete scalp biopsy.
The dermatologist in my country does noe kwow much about my condition.
Right now the pain is not so bad, but it have been as bad that i almost killed myself.
I have been of total 14 dermatologists in 6 months, and a additional 15 regular doctors.
Most of them giving me the same... Antibiotics and say it will be gonde within 3 weeks.
It is really painfull, and i probably will have a laser hair removal.
But i will discuss the xray for my dermatologist, however i do not if would have any comment because he has never seen my condition before, ore FD.
None of the 14 derm's i have been to have seen FD.
- Re: New to forum/FD - Really confuse... UserX
15 y
23,401
This is a reply to # 1,348,882Bredpitt,
I urge you to stay positive. I am sorry you have had such poor luck with dermatologists. It is indeed a rare condition, but I am surprised none of the dermatologists have encountered it. Antibiotics are not going to provide prolonged remission and in most cases they provide very little help at all. Be sure to suggest the diagnosis of "dissecting cellulitis" to whomever you see next and ask for a biopsy. Of course FD and dissecting cellulitis share many similarities so it may be a variant of either. Here are some links detailing the condition http://www.keratin.com/at/at015.
Here is a link to a case study that appears similar http://priory.com/medicine/dissecting_cellulitis.htm.
Here is a link to an organization specifically for scarring alopecia http://www.carfintl.org
- maybe you can contact them and see if they could point you in the direction of the right specialist. Again, I think your best bet is laser epilation, or some other surgical intervention. All other therapies are symptomatic and not curative. Things that have worked are oral zinc, isotretinoin, dapsone, among a number of intralesional steroids plus Antibiotics . I feel for you very much bredpitt and I hope you can qualm your Depression and suicidal ideations. I would think of it like this; the worst that can happen is you get laser/xray epilation and lose all of the hair on your scalp. Millions of men lose there hair, yours was just another means to the same end. I know you are in pain, but i am confident you will find relief in one of these therapies. If I were in your shoes I would do the laser epilation in a heart beat but that is a personal decision. I wish you the best.- Re: New to forum/FD - Really confuse... UserX
15 y
23,232
This is a reply to # 1,348,910One last thing....a hormonal workup may be in order as this disease seems to realte to angrogens. You weren't taking any anabolic steroids or hormones before the problems arose?
- Re: New to forum/FD - Really confuse... Bredpitt
15 y
23,253
This is a reply to # 1,348,914Yes i was taking anabolic steroids before this occure.
I have been using anabolic steroids for many years...
Testosterone, Growth hormone, Insulin etc.
But i stop taking it when this thing happend to me, because i was not in the mood for weight lifting anyway.
Norway is one of few countryes that allow anabolic steroid use as long as it is not combined with comepetition.
But yes, i know.. i have been so stupid.
And i can promise you.. i will NEVER put anything like that in my body again.
I had my thougts that it could be some of the reason.Advertisement
Natural Weight Loss
Remove toxins from the body, restore digestive function, lose weight and keep it off.
- Re: New to forum/FD - Really confuse... Bredpitt
15 y
23,127
This is a reply to # 1,348,914Im curiuous, why do you have so much information on the area?!
You say you have a chronic skin disease, but it sounds like you are a doctor also ?
- Re: New to forum/FD - Really confuse... Bredpitt
15 y
23,253
- Re: New to forum/FD - Really confuse... Bredpitt
15 y
23,185
This is a reply to # 1,348,910http://www.keratin.com/at/at015.
not found
http://priory.com/medicine/dissecting_cellulitis.htm.
need password.
Maybe i'm just in the wrong part of the world.- Re: New to forum/FD - Really confuse... Bredpitt
15 y
24,062
Energy Awareness Course
Use CureZone kode to get a free session!
New lower prices!
Hulda Clark Cleanses
This is a reply to # 1,348,930Most of my big liquid filles bumps are gone by now.
But still have a lot of sores...
- Re: New to forum/FD - Really confuse... UserX
15 y
23,240
Energy Awareness Course
Use CureZone kode to get a free session!
New lower prices!
Hulda Clark Cleanses
This is a reply to # 1,348,940No need to feel guilty for taking the anabolics. Almost no one even knows this is a complication of such a thing, and I know a ton of people who take them. It may be good news that your condition was induced by steroids. I suspect that discontinuing the anabolics and possibly starting Isotretinoin (accutane) will put it in remission without forcing you to have permanent hair removal. After hearing that you were on anabolics, I am absolutely sure you are suffering from Dissecting Cellulitis and not Folliculitis Decalvans. Stop the gh and steroids and continue treatment, possibly look into acutane. I think you will recover my friend.Advertisement
Natural Weight Loss
Remove toxins from the body, restore digestive function, lose weight and keep it off.
- Re: New to forum/FD - Really confuse... Bredpitt
15 y
23,196
This is a reply to # 1,349,143I will talk to my dermotlogist tomorrow, also i will try to put him in the direction of Dissecting Cellulitis and tell him i want a scalp biopsy.
Accutane is a rather expensive drug and also "last" try in my country because of many reported side effects.
But i will try to get it. So it is very hard to get the prescrition for it.
But if i can not get it i will go for the laser surgery and pay for it myself.
My father has enough money, and he told me that he will take any expenses as long as it's making me well again.
Also if this is because of the steroids this may explain all the Acne in my face, i never had Acne before in my life, i now got a cream called skinoren in my country for the acne. It contain Azelaic acid.
But how do i perform a hormon workup?!- Re: New to forum/FD - Really confuse... UserX
15 y
23,410
This is a reply to # 1,349,179Well accutane does have its risks and I agree that you should take it with caution. It is a personal decision on whether or not to take it. I am convinced this condition was brought on by the steroids. I'm not sure how much good a hormonal workup will do you at this point since you have discontinued the steroids, but it only requires a blood test to check for testosterone levels etc. Some people get pituitary malignancies that create massive spikes in their Growth Hormone levels and can cause these types of conditions. Disseciting cellulitis seems to be caused by hyperkeratinization of the hair follicle, particularly the outer root sheath. The follicle fills with keratin material and the clogging causes a rupture, and spilling of material into the epidermis causes a granulamotous reaction followed by secondary bacterial infection. This is why you have the deep nodules and sinuses, the material is actually ruptured into the skin. This is caused by an occluded follicle thus the follicular occlusion triad I mentioned earlier. Hormones play a part in that androgens upregulate the keratinization of the follicle. Isotretinoin works in that it blocks this hyper keratinizing effect and normalizes it. Maybe you could try a topical retinoid instead of the isotretinoin (oral retinoid) as these have been shown to be quite effective. Acne in itself is a process of similar effect. Hyperkeratinization creates a plug and sebum build up allows bacteria to overgrow. Both events are hormonally influenced. Anyhow, it may be that you have some sort of hormonal imbalance that could indeed be corrected.
- Re: New to forum/FD - Really confuse... 7621
15 y
23,113
This is a reply to # 1,349,179Bredpitt,
I was wondering if you have tried the accutane yet? Had any improvements? I'm going to my derm tomorrow and going to request the accutane for myself.
7621
- Re: New to forum/FD - Really confuse... UserX
15 y
23,410
- Re: New to forum/FD - Really confuse... Bredpitt
15 y
23,196
- Re: New to forum/FD - Really confuse... jdrewson1984
15 y
23,242
This is a reply to # 1,348,940Advertisement
Natural Weight Loss
Remove toxins from the body, restore digestive function, lose weight and keep it off.
Bredpitt,
Thank you for your messages. I am really embarrassed with my Folliculitis Decalvans. I have had FD since 2002 and this is what it currently looks like. I don't have any pain which keeps me from sleeping, though -- which makes me think that maybe you don't have FD at all, but instead maybe you have something else, like the dissecting cellulitis someone else mentioned which could be causing your severe pain. For FD I have tried many medicines but none have worked very well. The ones that worked a little better than others were Dapsone, Rifampin and Clindamycin (orally) and using Ketoconazole shampoo (topically). I am severely depressed and so after reading your message I was encouraged. Thank you
- Re: New to forum/FD - Really confuse... Jujubee83
15 y
22,744
This is a reply to # 1,348,940Today I was sent a message from someone asking for my prayers as he struggles with folliculitis decalvens and I then I saw your new photos Bredpitt. My heart goes out to each of you as I know your suffering is worse than my own.
It so happens that I am fasting with prayer for personal family matters today and I will most definitely add to my prayers the concerns of this group. I believe we go through life to learn from our struggles and to learn how to solve them so I will pray for each of you that you may feel the Lords hand of strength and comfort to endure and hold up through this battle and I will ask that those with in the medical community will take a closer look at our sufferings and that funding to help find cures will open up. That new discoveries in medicine will lead to new approaches that will hopefully rid us all of this infliction, God willing. We live in the most miraculous of all times and we are privalaged to be living now when there is more hope for cures and answers than ever before in the history of mankind.
- Really confused.. New pictures today... #146390
13 y
18,767
This is a reply to # 1,348,940Here is an article I read that had some natural remedies you can try : )
Helped me, especially apple cider vinegar.
http://ezinearticles.com/?Cure-Folliculitis-Naturally---What-Is-Folliculitis?...
- Re: New to forum/FD - Really confuse... UserX
15 y
23,240
- Re: New to forum/FD - Really confuse... Bredpitt
15 y
24,062
- Re: New to forum/FD - Really confuse... UserX
15 y
23,232
- Re: New to forum/FD - Really confuse... UserX
15 y
23,401
- Re: New to forum/FD - Really confuse... Bredpitt
15 y
23,291
- Re: New to forum/FD - Really confuse... Jerboa
15 y
23,123
This is a reply to # 1,347,977Advertisement
Natural Weight Loss
Remove toxins from the body, restore digestive function, lose weight and keep it off.
My mother had FD after experiencing severe stress in her life. Since she was in her late 60s, I had to monitor her condition closely and find treatment for her. it is true that it took her about 2.5 years to get cured. She tried numerous over the counter and prescribed Antibiotic meds, creams, etc. They either did not work or provided temporary relief.
I believe that what really helped her is reducing stress, healthy Diet of fresh vegetables and fruits, and just time to work on reducing stress in her life. The treatment that mostly helped her was accupuncture. After 2-3 sessions, the symptoms gradually reduced. I believe that this condition is triggered by stress and you should work on reducing stress in your life and having positive thoughts.- Re: New to forum/FD - Really confuse... Jujubee83
15 y
23,062
This is a reply to # 1,350,000Bredpitt, while I have no answers for your treatment, I'm still searching for my own cure, I do want to tell you that I'm praying for you and everyone else who is suffering as severely as you on this forum. While prayer can help lead us to a cure more important I'm praying you will have the strength to not give up on your life right now. You have a lot to live for, so when the waves of Depression hit, as they do for many of us who suffer with this, just give yourself another day. I feel certain that our efforts on this board are going to help draw more attention to our different forms of follicle desease and hopefully somewhere more research into permanant cures.
I have had regular bacterial folliculitis, not the severe FD others on this board have, since I was a kid, over 33 years, so stress and drugs have nothing to do with it. It seems by what I've read on these forums that those with the form of FD that Bredpitt have might have a good chance of finding a cure. I'm looking into the Neem tree oil treatment for myself at this point since anti-biotics do nothing anymore and their side effects are worse than my condition. I wish I could get more info. on the light treatment. I figure if not in my lifetime, than let my life be a part of the cure for those who come after me...but it would really be nice to be rid of this before I go to a nursing home in 40 years or so. rrr.- Re: New to forum/FD - Really confuse... Bredpitt
15 y
23,197
This is a reply to # 1,350,519Thank you alot for you message, it cheers me up a little bit that people concern about my disease/problems.
It's alot of those who actually makes things worse by commenting my head.
I have bought Neem oil that is added 5% Manuka oil, got it in the mail today and will see if that can do any help.
I pray for that i might have the dessecting cellulits, because the cure seems much more easy than for FD...
BredPitt- Re: New to forum/FD - Really confuse... Jujubee83
15 y
23,203
This is a reply to # 1,350,545We're all looking forward to see how Neem Oil works for you. Would you be okay with telling us where you got yours? I'm still not sure what brand to buy.
Good luck
Expand 19 messages, 21 to 39 of 39 Bredpitt
15 y
23,559
- Re: New to forum/FD - Really confuse... Jujubee83
15 y
23,203
- Re: New to forum/FD - Really confuse... Bredpitt
15 y
23,197
- Re: New to forum/FD - Really confuse... Jujubee83
15 y
23,062
- Re: New to forum/FD - Really confuse... UserX
15 y
24,414
Share:
Translate This Page: