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Comment by Let's Solve This on October 9, 2015 at 3:22pm

Joy, that's so great to hear!  I'd like to know more about the yeast cleanse.  I, too, have eliminated everything I can find that has Vitamin A in it (especially retinyl palmitate and retinol), and the itching has subsided a lot.  No new hair growth, though, and it seems that the hair loss is continuing pretty rapidly.  I am just taking Doxycycline right now and I'm thinking about taking Plaquenil.  Are you taking that?  

Also, there IS interest in this -- you may know, but Dr. Elise Olsen at Duke is conducting a study right now, and there are 9 sites around the U.S. who are participating.  I met with her on Monday and she has put me in the study.  It's an information gathering study, no drug trials or anything like that.  I hope to have time this weekend to fill out the online questionnaire.  It sounds like it is quite in-depth.  I'll let everyone know what it's like when I finish it.  

And yes, it seems like most everyone who posts anything here has already been quite focused on heath - eating right, exercising, etc.  I am hoping that we can find the commonalities so we can put an end to FFA.  Dr. Olsen said that she thinks it must be something environmental - maybe something we are putting on our bodies.  I wonder about Vitamin A, and also about mineral makeup and sunscreen.  I thought about sunscreen because I read someplace that it seems to impact women of European descent - and I thought many of us may use sunscreens, including those in our day-time moisturizers and/or in our make-up. I've read a lot about nanoparticles in all this stuff, too.  I realize that I never gave any thought to anything I was using - just thought if they can sell it, it must be safe to use!  I don't feel that way, now!

Comment by Joy on October 9, 2015 at 11:50am

Wanted to report in that I have just finished a yeast cleanse and have gotten rid of every thing that even looked like it might have vitamin a in it.  My scalp is the best that it has been with just the tiniest two inches about three follicles deep that you can see any evidence of the LPP.  I have been using vinegar on that area and I have been using argon oil with lavender oil in it on all the area of hair loss.  I have no vein prominence - pretty much itch free - the pulsative tinutis that I seem to have on the side where it all started is also amazingly getting quiet.  I have not lost any hair since almost the beginning but I really believe that even though my body was obviously in auto immune land that the fact that I took vitamin b and milk thistle probably kept me from getting any more overloaded with A - I have not taken the time to look up all the shampoo and crème rinse that I have used over the last 7 or so years but I will bet that A will show up there as well.  I am appalled that there is not more interest in all of this - all of us seem really healthy - eat well - exercise - all different ages - there has to be some commonality!!!

Comment by LoriO on October 8, 2015 at 10:55pm

Sallylwess, I just took iron supplements (65 mg) every day.  I also was low on Zinc and had to take that, as well as B-12.   I know that if you take zinc supplements too, it can cause your iron to come back up slowly.  Three years seems like a long time!

Comment by sallylwess on October 8, 2015 at 9:05pm

LoriO, How did you get your Fettitin back up?  My was at 7, then at 13.  I am taking an iron supplement, but It has not come up yet.  It has been low for at least three years.

Comment by LoriO on October 6, 2015 at 10:17am

MJ, my Ferritin was 6 a year ago.  It's taken a year to get it up to 64.  Haven't reached the magic 70 yet, where my hair will start growing back. (haha...that's all I thought it would take a year ago before my diagnosis.)

Comment by MJ on October 6, 2015 at 5:38am

Lot,
My zinc was low. I'm don't recall the number. My ferrous was 40 when first tested, then went to 66 after six months taking slow FE. I think it is supposed to be above 70.

Comment by SJC on October 5, 2015 at 11:20pm

I'm new to this forum and wanted to share this interesting article pertaining to NAD+ that I came across while doing research. 

http://www.realnatural.org/probiotic-yeasts-stimulate-nad-increase-...

Be well, everyone!

Comment by LoriO on October 5, 2015 at 5:55pm

Isabel, I had low ferritin too!  And low Zinc.  I had to correct those levels before my Dr. would refer me to the Dermatologist.  I've seen a few people on here who said they had low ferritin.  Mine was super low.

Comment by Isabel on October 5, 2015 at 4:55pm

LoriO

I asked my derm about a month ago to have my vitamin A levels tested. My results were normal (0,5 micro grams/ml - normal for an adult woman is 0,35-0,75).
My ferritin levels were low, however, and I'm now taking medication to raise them.

Comment by Classical Anne in NC mountains on October 4, 2015 at 6:55pm

Some good discussions!  Anne Louise, I really appreciate the hope contained in your NAD+ article. And kudos to LoriO for finding it in a supplement.  Sandy, you make an important point in distinguishing male/female "pattern baldness" from FFA -- if your Dad's new hair loss leaves a full head of hair at the crown and back, that does sound like FFA.  

For me, the problem with clip-in hairpieces is that I have both female pattern baldness as well as FFA.  I got a really pretty piece and was excited to have my stylist tailor it to my haircut.  But she was complete unable to attach it with its little comb-like clips to the top of my head because my hair there is now so thin it absolutely would not hold.  I now just use it occasionally by holding it [still rather loosely] with large barrettes and covering them with a wide headband or scarf band.  A lot of effort for minimal improvement.  Still, it's only hair [well, lack of] and I can certainly live with that.  And I am very pleased with 2 wigs I now wear to most outings.

I wanted to add to the HLA-B27 issue that I brought up.  My original diagnosing Rheumatologist, some 20+ years ago, put it in layman's terms for me.  He drew a little stick figure body and pointed out the areas where the linings of organs could deteriorate by autoimmune self-destruction.  At the time, I had only Fibromyalgia, and a problem with one shoulder which surgery corrected.  But I held on to his little drawing.  Since then, the linings of my bladder and my colon have been significantly damaged, and are chronically painful, though they are managed with exorbitant medications.  My other autoimmune issues are much less significant, and probably not an effect of the HLA-B27 syndrome.  But I'm wondering now if it might apply to FFA -- isn't the follicle sheath what is dying, causing the hair to fall out?  Might that be considered a "lining"?

Sorry my posts tend to be so long.  But isn't it nice to sort of think out loud [in print] among friends?

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