Robin
  • Female
  • Livermore, CA
  • United States
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Dealing with the Autoimmune Aspect with Diet

Started this discussion. Last reply by Robin Nov 25, 2015. 11 Replies

Hi I am new to Alopecia World. I have Hashimotos and frontal fibrosing alopecia. So that is now two autoimmune conditions. They say if you have one you will have more. I don't really want more and…Continue

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Latest Activity

Dianna left a comment for Robin
"I actually do not know. I will find out though and get back to you!"
Nov 19
Robin left a comment for Dianna
"so Dianna, I see that the Revida products are made from industrial hemp...what do you understand to be the difference or benefit of the whole plant including flowers in making the CBD oil versus the industrial hemp? I am trying to figure this…"
Nov 19
Dianna left a comment for Robin
"Here is what I am currently using based on the consultation I had with SMJ: Revida Labs 3000 mg CBD oil - 20 mg 3 times a day.  You can order this online from Revida's website. Expensive but supposed to be excellent. Cannabigerol CBG 20 mg…"
Nov 19
Robin left a comment for Dianna
"Yes, for sure.......please send them to me.......but I think this industry has so so many little companies in the different states......not sure I can get them but want to know!"
Nov 19
Dianna left a comment for Robin
"I had trouble figuring out where to post as well. I may have gotten it right this time! If you would like the name of any of the products I am using or any of the handouts and studies I have, just let me know. I am happy to share! Dianna"
Nov 19
Robin left a comment for Dianna
"Dianna, first I get so confused on this site as where comments and discussion are or begin.......so hope this is in response to the message I just read in an email. Thank you so much for updating us. I will carefully go over everything you shared. I…"
Nov 19
Bab replied to Robin's discussion Trying a new approach with CBD oil... in the group Frontal Fibrosing Alopecia
"Robin, what brand of cbd oils are you using? Thanks"
Nov 19
Sha liked Robin's discussion Abstract about FFA....becoming an epidemic....
Nov 13
Diart replied to Robin's discussion Abstract about FFA....becoming an epidemic.... in the group Frontal Fibrosing Alopecia
"Thanks for posting this. We're not alone even though it feels that way some days."
Nov 1
Katherine replied to Robin's discussion Trying a new approach with CBD oil... in the group Frontal Fibrosing Alopecia
"Robin, I just saw your other thread on here - so sorry for asking questions you have already answered! I will get going now...and will report back on progress!"
Oct 29
Katherine replied to Robin's discussion Trying a new approach with CBD oil... in the group Frontal Fibrosing Alopecia
"Hello! Just re-reading this thread after getting hold of some CBD oil yesterday, at last! Would you say it works better if applied directly to the skin or if you put it under your tongue?  Robin, I hope you don't mind me asking but in…"
Oct 29
Maz replied to Robin's discussion Abstract about FFA....becoming an epidemic.... in the group Frontal Fibrosing Alopecia
"I'd say there's several possible explanations. 50 years ago I knew an older woman who always wore a scarf. She said she had alopecia but I never saw it and have no idea which type it was. As I remember the prevailing understanding at that…"
Oct 25
2Dachshunds replied to Robin's discussion Abstract about FFA....becoming an epidemic.... in the group Frontal Fibrosing Alopecia
"Wow, ok I hope some research money will finally go to this condition.  Fingers crossed!"
Oct 25
Robin added a discussion to the group Frontal Fibrosing Alopecia
Thumbnail

Abstract about FFA....becoming an epidemic....

Original ArticleFrontal Fibrosing Alopecia: An Emerging EpidemicMirmirani P.a,b,c · Tosti A.d · Goldberg L.e · Whiting D.f · Sotoodian B.g Author affiliationsKeywords: Frontal fibrosing alopeciaScarring alopeciaEpidemicAbstractSince the initial description of frontal fibrosing alopecia (FFA) in 1994, increasingly more cases of FFA have been reported in literature. Although clear epidemiologic data on the incidence and prevalence of FFA is not available, it is intriguing to consider whether FFA…See More
Oct 25
Robin replied to Robin's discussion Trying a new approach with CBD oil... in the group Frontal Fibrosing Alopecia
"thanks for sharing your experience...it is all an experiment....I got some redness back but I changed the brand I was using and it was a different oil base....the one I originally used is not longer available but now I have one more similar.......we…"
Oct 25
2Dachshunds replied to Robin's discussion Trying a new approach with CBD oil... in the group Frontal Fibrosing Alopecia
"Hi Robin: after reading your first post I have been trying CBD oil in tincture sublingually and using a topical salve at night.  CBD is legal in all states in US.  I think it has been helping and I also am using tacrolimus so not sure…"
Oct 25

Profile Information

Relationship Status:
Married
About Me:
I have frontal fibrossing alopecia. I am concerned to keep my hair but also that I now have two autoimmune diseases and do not want more! So, at this time I am committed to diet changes and treating the overall inflammation in my body for my general health.
Do you have alopecia?
Other type of alopecia
Are you age 18 or older?
Yes - I am 18 or older

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At 5:51pm on November 19, 2018, Dianna said…

I actually do not know. I will find out though and get back to you!

At 3:52pm on November 19, 2018, Dianna said…

Here is what I am currently using based on the consultation I had with SMJ:

Revida Labs 3000 mg CBD oil - 20 mg 3 times a day.  You can order this online from Revida's website. Expensive but supposed to be excellent.

Cannabigerol CBG 20 mg CBG per capsule CBG Isolate custom formulation - one time a day in the morning - I got this through SMJ who orders it from outside the US

Fairwinds Flow Creme - 250 mg CBD, 100 mg THCA, 25 md THC - evening. There are specific directions on how to apply so if  you decide to use this or can even order it, call the company. This is a Washington State company so I don't know availability outside of WA.  You could look at the creme on their website though for the formulation. 

I also have a recipe to make your own creme with the flower. I have not done that yet. They actually preferred I do this as we could control the CBD amount better.

High CBD with a little THC and the correct terpenes seems to be the focus along with fish oil for bio-availability. 

Let me know if the attachments don't open. 

Ailment%20Guide.pdf

Consult.pdf

Epigenetic%20control%20of%20skin%20differentiation%20genes%20by%20phytocannabinoids.%20-%20PubMed%20-%20NCBI.pdf

Ethan%20Russo%20ECS.pdf

human-endocannabinoid-system-e1500759390507.png.pdf

SMJ%20CONSULTING%20TERPENE%20PROFILES.pdf

tale-of-two-cannabinoids.pdf

Terpenes%20and%20the%20_Entourage%20Effect_.pdf

The%20endocannabinoid%20system%20of%20the%20skin%20in%20health%20and%20disease_%20novel%20perspectives%20and%20therapeutic%20opportunities.pdf

At 3:15pm on November 19, 2018, Dianna said…

I had trouble figuring out where to post as well. I may have gotten it right this time! If you would like the name of any of the products I am using or any of the handouts and studies I have, just let me know. I am happy to share!

Dianna

At 11:45am on October 2, 2018, Dianna said…

Hi Robin,

Thank you so much for all of your posts. I do not have a dermatologist who will work with me. It is pretty much lots of steroids or nothing. I am slowly going to stop using the steroid over the next month. Can you describe how you are using the tincture specifically and how much? I am going to try and find it up here in Washington. I tried 100% Cannabis oil last night but it was very hard to apply because it is so viscous. 

Blessings~

Dianna

At 12:07pm on September 26, 2018, Eli said…

Hi all,

The FFA started 5 years ago in my eyebrows.

In 2015 I noticed it on my sides. Still shedding (not much thank God).

So far I am applying rogaine (for men) once a day. No meds for me.

I would love to know more about CDB oil treatment.

thanks :)

 
 
 

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