any have Central Centrifugal Cicatricial Alopecia?

cheetarah1980

Well-Known Member
https://www.periscope.tv/w/aheDzjFK...Hd5OYvVDfGG2K2Xmr0y-ClBrIs25JE_IX-WbLf6-RRrJx

Watch the last part of Dr. Lenzy's Scope. CCCA is her area of research.
She's on the board of CARFINTL.ORG
Yo, this scope is soooo hard to get through. She keeps interrupting herself to beg for hearts. Chick, stop detouring and answer the freaking question. She was about to answer a question about JBCO and got two sentences into it and then started demanding hearts. Jeez!!
 

ilong

God's Own
My mom has alopecia and grandmother temple area. The picture below is what is starting to happen to me but not as advanced. I can't allow this. So if I find something that works or invent something that works you guys will know.


@Karribean_Kurls - were you having a consultation for a hair transplant? I see the hair line penciled in, which is usually what HT surgeons do.
 

ilong

God's Own
Hi everyone. I have traction alopecia at my hairline (bald edges) due to past bad hair practices (tight weaves). I have tried everything and it is irreversible. I am now consulting with doctors for a hair transplant. I am sick of the snake oil, potions and want to be able to wear my hair off my face.

I've met with 1 doctor and will be meeting with 2 more before I decide on who will be doing my procedure. I'm really excited about a female African dermatologist who does the procedure. I may have the courage to post pics after its all said and done but realself.com has been a good source of info for before and after pics. I understand that this may not be suitable for everyone but there's no other option for me.

@nycutiepie - have you checked out this thread?
https://longhaircareforum.com/threads/the-official-hair-transplant-thread.761131/

There are other ladies on the forum who have had, researching or scheduled for hair transplants. I think more and more hair loss sufferers are realizing that a hair transplant is the only course of action to restoring their hair.
 

cheetarah1980

Well-Known Member
@cheetarah1980, she did a speech on CCCA at a conference today. She's not begging for hearts in this presentation. :look: :lachen:

https://www.periscope.tv/w/aiHcpzFK...4dq4uayPqn7ZGcdG_d7kBH-7u8mMAP05KFOmr7afdVCqn
Thank you for sharing. She makes CCCA seem almost insurmountable. I'd like to think I won't have to use Rogaine for the rest of my life. While I know that treatment will never stop (especially if we're looking to regrow hair) I have to think that there are more natural remedies. I wonder if she's researching the role of diet, proper hydration, scalp cleansing, and natural topical aids in halting scarring alopecia and promoting regrowth in areas that have yet to scar. Also have they researched how to remove scar tissue from the follicle so it can once again be viable?
I see my dermatologist on 7/1 and I'm really hoping that she can tell me there's been progress. I know the natural route is slow but thus far all I've seen is a decrease in shedding. I'm starting my last 30 days of Viviscal and I'm praying to see some baby hairs sprout by the 3 month mark. I'm trying to avoid steroid shots (which my derm is also against).
 

mamaline

Active Member
I just got my scalp biopsy results back with this diagnosis yesterday. I go back to the dermatologist on Thursday to discuss treatment options. I don't know how extensive my CCCA is. I feel like it's pretty bad, but other people tell me that they can't tell. The pain I have in my scalp is horrible. I've had for almost two months now. Hopefully the doctor can give me something that will provide some relief. I've been doing scalp massages with emu oil for the past two weeks. It hasn't really helped with the pain.
 

nycutiepie

Well-Known Member
I just got my scalp biopsy results back with this diagnosis yesterday. I go back to the dermatologist on Thursday to discuss treatment options. I don't know how extensive my CCCA is. I feel like it's pretty bad, but other people tell me that they can't tell. The pain I have in my scalp is horrible. I've had for almost two months now. Hopefully the doctor can give me something that will provide some relief. I've been doing scalp massages with emu oil for the past two weeks. It hasn't really helped with the pain.
So sorry to hear this but one derm told me it is treatable. Don't give up hope. I have traction alopecia and I'm getting a transplant.
 

cheetarah1980

Well-Known Member
I fell off my regimen during the summer, both hair care and nutrition wise. I'm getting myself back together now. I just washed my hair and did an ACV rinse. I'm super nervous about detangling it because I'm scared of how much hair I'll lose. However, I did notice that I've gotten a good deal of growth in the last 6 weeks. I think it's because I've continued with the Viviscal and other vitamins (I ran out of some and didn't replenish for a bit but I'm back on all of them now). Also I went to a trichologist who confirmed the CCCA diagnosis and put me on Rogaine. It's only been about a month so we'll see how it goes. She also tested my iron and vitamin D, but I haven't received those results yet.
 

Evolving78

Well-Known Member
@Smiley79 - Green Tea Extract (GTE) comes in pill form.
http://www.vitacost.com/source-naturals-green-tea-extract

Glad you asked! When I went to Vitacost for the link, I saw GTE is offered in Decaf -
http://www.vitacost.com/life-extension-decaffeinated-mega-green-tea-extract-100-vegetarian-capsules
which is what I need.

Also, don't discount Pumpkin Seed Oil - it offers benefits similar to Finasteride (aka Propecia) which is predominantly taken by men to slow down hair loss associated with Male Pattern Baldness.

You should also know, Green Tea can be a fat burner and help with weight loss.
I’m back in this thread again... I have some matcha tea powder. It’s not the best though.. I’m mad! I spent 18 bucks on it! Lol
But I will look into getting pumpkin and green tea. I also need to get back drinking beet juice.

I have been using my special blend of oil and have been using Wild growth oil.

I have hair growing back in my all of my spots, but I was considering using Rogaine. Since I don’t have severe CCCA, I can use that and not have to worry about having to continue to use it. I’m not ready to go natural either. I have been looking into a system that can keep my hair straight, but I have to use a sulfate shampoo to keep my scalp clean. I know I can’t use lye relaxers anymore. Too harsh on my scalp. And I can’t use hair color, or other things on my scalp. I used something last time and it messed me up.
 

Evolving78

Well-Known Member
I fell off my regimen during the summer, both hair care and nutrition wise. I'm getting myself back together now. I just washed my hair and did an ACV rinse. I'm super nervous about detangling it because I'm scared of how much hair I'll lose. However, I did notice that I've gotten a good deal of growth in the last 6 weeks. I think it's because I've continued with the Viviscal and other vitamins (I ran out of some and didn't replenish for a bit but I'm back on all of them now). Also I went to a trichologist who confirmed the CCCA diagnosis and put me on Rogaine. It's only been about a month so we'll see how it goes. She also tested my iron and vitamin D, but I haven't received those results yet.
Have you used the Rogaine?
 

Evolving78

Well-Known Member
I’m gonna try this bald spot recovery serum from Hawaiian Silky. It has garlic in it. I’m going to see if it helps with shedding. I also got another comb. I feel like my other comb is tearing my hair out. I’ll see how this serum works for 30 Days, then I will switch to Rogaine, if there is no improvement. I have hair growth in my patches, but I really wanna heal my scalp, without medication.
 

Evolving78

Well-Known Member
I plan on getting some wheatgrass powder too.
I got a list of things I wanna get
Some more DE peppermint and Aloe shampoo
Garlic supplements
Wheatgrass powder
Pumpkin seed oil supplements
Wild growth oil yellow and white bottle
DE silk spray. (Builds chemically treated hair back up)
DE restore vitamin
 

ilong

God's Own
I’m back in this thread again... I have some matcha tea powder. It’s not the best though.. I’m mad! I spent 18 bucks on it! Lol
But I will look into getting pumpkin and green tea. I also need to get back drinking beet juice.

I have been using my special blend of oil and have been using Wild growth oil.

I have hair growing back in my all of my spots, but I was considering using Rogaine. Since I don’t have severe CCCA, I can use that and not have to worry about having to continue to use it. I’m not ready to go natural either. I have been looking into a system that can keep my hair straight, but I have to use a sulfate shampoo to keep my scalp clean. I know I can’t use lye relaxers anymore. Too harsh on my scalp. And I can’t use hair color, or other things on my scalp. I used something last time and it messed me up.
@shortdub78 - give careful consideration to using Rogaine. From everything I've read - once you begin using it, it requires consistent long term use, otherwise hair growth will terminate and digress.
Have you tried the other recommendations?
 

ilong

God's Own
I’m gonna try this bald spot recovery serum from Hawaiian Silky. It has garlic in it. I’m going to see if it helps with shedding. I also got another comb. I feel like my other comb is tearing my hair out. I’ll see how this serum works for 30 Days, then I will switch to Rogaine, if there is no improvement. I have hair growth in my patches, but I really wanna heal my scalp, without medication.
Have you considered purchasing garlic oil on your own and adding it to your existing products? Mahabhringaraj (Bhringraj) Oil is a staple for me. I add it to my Shea Butter hair pomade that I make, along with other oils, such as garlic oil.

Here is an old thread on it:

https://longhaircareforum.com/threads/mahabhringraj-oil.173271/

I purchase mine from a local Indian grocer in my area.
 

Evolving78

Well-Known Member
Have you considered purchasing garlic oil on your own and adding it to your existing products? Mahabhringaraj (Bhringraj) Oil is a staple for me. I add it to my Shea Butter hair pomade that I make, along with other oils, such as garlic oil.

Here is an old thread on it:

https://longhaircareforum.com/threads/mahabhringraj-oil.173271/

I purchase mine from a local Indian grocer in my area.
Is it odorless? I wanted to take the supplement for cardiovascular reasons too.
 

discodumpling

Well-Known Member
It has been a couple of years since my scalp issues were a major problem. I have hair in my bald spot it grows like the rest of the hair on my head and doesn't get dry, brittle and fall out any more. With time and treatment the texture is now the same as the surrounding hair.
I still take vitamins regularly...either a multi or sometimes just a B-complex. However the key for me is and has always been consistency.
 

Evolving78

Well-Known Member
It has been a couple of years since my scalp issues were a major problem. I have hair in my bald spot it grows like the rest of the hair on my head and doesn't get dry, brittle and fall out any more. With time and treatment the texture is now the same as the surrounding hair.
I still take vitamins regularly...either a multi or sometimes just a B-complex. However the key for me is and has always been consistency.
Do you know what was causing the hair loss?
 

Evolving78

Well-Known Member
I have the DE aloe and peppermint shampoo. It helps calm down my scalp. I like the DE Express Almond butter conditioner, but it got on my scalp and caused itching. I know for sure I will not be cowashing and sticking to washing 2 a week. I started using Rogaine, but haven’t used it in a few days. It causes dryness. Right now, I’m just looking for ways to keep my hair from being dry.
I will get the pumpkin seed oil supplements today. I know drinking water will be the major key to getting this dryness at the roots under control.
 

cheetarah1980

Well-Known Member
Are you going to maintain it short?
Yes I will maintain it short. If there is any reversal I'll consider growing it back out. I've been going through this for nearly 9 years. I've tried to treat and reverse it over the years but never stuck with a regular regimen. This year is probably the longest I've really been consistent. The first thing I did this year was to almost eliminate gluten and dairy. I did that in Jan/Feb. I'm now trying to cut out added sugar too. I've incorporated a lot more leafy green veggies and nuts and seeds into my daily diet. In fact, I'm snacking on pumpkin seeds now. Since January I've been regularly massaging my scalp for 20 minutes/day with a jojoba/avocado/rosemary/tea tree oil blend. I have been taking Biotin, Fo-ti, and MSM daily since January (I admit to a few missed days). I just got Nutrafol (for a 2nd time) a couple days ago.

I think I've finally gotten it through my skull that results are not immediate and the key is consistency. I always fell off of any kind of routine because 1) my condition was slow progressing so I could cover the thinning and bald spots, 2) My hair wasn't getting much worse but I wasn't seeing "results" and 3) I am just lazy. Now I realize that I won't see results for a long time. It could be 6+ months before hair begins to regrow...but it won't regrow if I don't stick to the routine.

With my hair gone I'm no longer stressed about breakage, shedding, etc. I can just focus on the process and not be obsessed with the results.
 

Black Ambrosia

Well-Known Member
Yes I will maintain it short. If there is any reversal I'll consider growing it back out. I've been going through this for nearly 9 years. I've tried to treat and reverse it over the years but never stuck with a regular regimen. This year is probably the longest I've really been consistent. The first thing I did this year was to almost eliminate gluten and dairy. I did that in Jan/Feb. I'm now trying to cut out added sugar too. I've incorporated a lot more leafy green veggies and nuts and seeds into my daily diet. In fact, I'm snacking on pumpkin seeds now. Since January I've been regularly massaging my scalp for 20 minutes/day with a jojoba/avocado/rosemary/tea tree oil blend. I have been taking Biotin, Fo-ti, and MSM daily since January (I admit to a few missed days). I just got Nutrafol (for a 2nd time) a couple days ago.

I think I've finally gotten it through my skull that results are not immediate and the key is consistency. I always fell off of any kind of routine because 1) my condition was slow progressing so I could cover the thinning and bald spots, 2) My hair wasn't getting much worse but I wasn't seeing "results" and 3) I am just lazy. Now I realize that I won't see results for a long time. It could be 6+ months before hair begins to regrow...but it won't regrow if I don't stick to the routine.

With my hair gone I'm no longer stressed about breakage, shedding, etc. I can just focus on the process and not be obsessed with the results.
Have you tried PRP therapy? I've heard it works but it's expensive and you have to keep it up long term.
 

Keen

Well-Known Member
Yes I will maintain it short. If there is any reversal I'll consider growing it back out. I've been going through this for nearly 9 years. I've tried to treat and reverse it over the years but never stuck with a regular regimen. This year is probably the longest I've really been consistent. The first thing I did this year was to almost eliminate gluten and dairy. I did that in Jan/Feb. I'm now trying to cut out added sugar too. I've incorporated a lot more leafy green veggies and nuts and seeds into my daily diet. In fact, I'm snacking on pumpkin seeds now. Since January I've been regularly massaging my scalp for 20 minutes/day with a jojoba/avocado/rosemary/tea tree oil blend. I have been taking Biotin, Fo-ti, and MSM daily since January (I admit to a few missed days). I just got Nutrafol (for a 2nd time) a couple days ago.

I think I've finally gotten it through my skull that results are not immediate and the key is consistency. I always fell off of any kind of routine because 1) my condition was slow progressing so I could cover the thinning and bald spots, 2) My hair wasn't getting much worse but I wasn't seeing "results" and 3) I am just lazy. Now I realize that I won't see results for a long time. It could be 6+ months before hair begins to regrow...but it won't regrow if I don't stick to the routine.

With my hair gone I'm no longer stressed about breakage, shedding, etc. I can just focus on the process and not be obsessed with the results.
I could have written this myself. As I was reading your previous message, I realized I should also maintain short hair (not boy cut short). It's easier to be consistent with shorter hair.
 

cheetarah1980

Well-Known Member
Have you tried PRP therapy? I've heard it works but it's expensive and you have to keep it up long term.
I just looked it up. I can't afford it at this time. I'm going to maintain my close haircut. It looks like I'll need cuts every two weeks, because it's already growing back and it's super patchy. I'm just learning to live with it and not feel bad. Female hair loss is super common and I have nothing to be ashamed of. I'll continue with my nutrition, vitamins, oils and massages. If nothing else, they at least help create a relaxing night time routine.
 

ajoke

Well-Known Member
I’m on this journey too. My Trichologist put me on Regaine for 3 months in a ramp up approach, then one month of 2x daily. Then a deramp phase where I use it every other day, but interspace with an ayuverda based scalp treatment.
she also told me not to massage but gently tap the treatment in. The massage is more damaging than helpful.
she has had a lot of success helping people regrow their hair.
 
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