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One Step Forward And 2 Steps Back :-(

Discussion in 'Success Stories and Positive Outlook' started by Barbarina, Jun 17, 2019.

  1. Barbarina

    Barbarina Established Member

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    Soooo....ladies, was quite absent fm this site,because had some positive changes in my hair.
    1. My strange dandruff and stubborn dry patches on my temples which I developed suddenly and no matter which shampoo I used, they stuck with me for 1.5 year. Suddenly about 9 months ago, they all just gone ! Just like that. I stopped bothering about it, because decided it is not such big trouble after all.

    Also my hairfall stopped fm approx Febr and picked up recently. When I say stopped - I mean - wash day or not wash day - I lost max 10 hairs. I already thought that my TE or Androgenetic Alopecia did their wishes circle as they do every couple of years and now yes, ok, I was left with less hair, but still with a decent amount of it - last Oct and Nov was so bad for me that I thought I will be celebrating Xmas with my boyfriend and his friends while wearing hat or bandana. And then it stopped. But picked up again - 100 hairs every day easily. And they look very very thin and have nothing to do with my thick strands. Freaky really. My stress levels were increased lately more than before, not because of hair (because hairfall stopped as mentioned above), but due to some family and work reasons (lost my job and really it is not fun to live of savings) And on top of everything discovered that my favorite pullovers cashmere are eaten avay by moth. F******CK !!!!!!! Wondering what is going to happen 3 months down the road, because I was extremely nervous and that is a classical trigger if lets say for 3 days you are extremely hysterical and nervous - that is hair fall trigger. Sigh....But may be it will blow over. Fingers crossed. Also blaming my hairfall for the change of the pill, my useless gynecologist suggested I should try it. It was developed only in 2010, so very new on the market and estrogen is also has nothing to do with extrogens used in some older pills. I noticed the difference, that I put on weight, while eating the same. Quit it and back to Yasmine, no Diane any more. Yasmine is known for taking away excess water out of body, so far is true, I dont wake up any longer with fingers which resemble sausages and equally swallen calves like if I was hiking in the woods for 24 h.

    So, I said Hi. so far for my update. Will go now and put rogaine on my scalp.
    AND I ASKED IT BEFORE : Did anyone hear fm memeber Jtliy (something like that), she was really going mad last winter around Xmas time (so was I) and she wanted to do again the plasma therapy. SO how did it go for her.? My heart was always with her because I also used to have super thick hair which I used to curse all the time and .....now I have quarter of it. And she had similar story to tell, just for her it went very very very fast.
     
  2. TinaM1968

    TinaM1968 Established Member

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    glad things improved and hope they continue for you, I posted about Jtliy to you somewhere in here before.. last I sAw her she was on Facebook in a hairloss group and sadly seems things weren’t any better. That was a couple months ago. I do hope things are better for her
     
  3. Jtilly

    Jtilly Established Member

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    Hey guys! Very sorry I have been MIA... Sadly things have only gotten worse.. My rapid extreme shed lasted from end of November to about April. It reduced to losing 200’ish in April and May rather than 3-400... So still way too much.. But I thought maybe it would continue to slowly reduce..
    However in the last 2 weeks it has picked up to around 400-500 hairs a day.. Every day. I’m not sure why.. I’ve racked my brain trying to figure this out. I eat super healthy, have tried acupuncture, have stayed calm/stress free (well a lot more than I ever used to be anyways), have seen so many doctors, had lots of tests. I think I just have so much going on in my body.
    Had a positive mold toxicity test. Had a scalp biopsy sent to a neurologist who found several abnormalities. (I now see one of the top dermatologists in the US. She’s the head of dermatology at the University of Minnesota. She’s the president of the North American Hair Research Society.) They found things they have never seen before.. They found multi focal fiber loss (similar to neuropathy), and then an abundance of Merkel cells hanging out everywhere (usually they gather in one area. Mine are everywhere), more so than they’ve ever seen in any other patient. They told me it opened up a whole new field of research for the neurologist.. But because they can’t compare it to anyone else, because they’ve never seen this before, they can’t really help me other than offer me topical gabapentin to reduce sensitivity, which I’m not on board with... It’s not going to grow hair and it’s not going to reduce shed. Best it can do is act as a band aide for any sensitivity.
    I’ve done 3 rounds of PRP/CRP. Once last September, which my shedding stopped within 2 weeks of treatment for 2 months.. Then again last January.. Not sure if it helped with some regrowth or not, but the shed didn’t stop, and then again had it end of May but shed is not stopping.. (This is different than PRP, so isn’t done every month. It’s done every 3-4 or 6 months and then maintenance if it works)
    I’m still struggling with my Celiac. I am having problems with more foods than just gluten.. Celiac cross reactive foods, inflammatory foods, foods high in histamines...
    I only weigh 92lbs now no matter what I do.. I look like a skeleton.
    But have had nutrition tests and they come back normal.. Miraculously no deficiencies ‍♀️
    But my gut is a mess..
    So... as of today, in the last 2 weeks I have lost an insane amount of hair.
    It’s absolutely unbearable.
    I wake up everyday and think to myself “This CANNOT be happening”. Honestly, I often pray I don’t wake up anymore...
    I cannot believe that 18 months ago I was having my hair thinned out, huge strips of hair cut out and now I sit here with hardly any hair left..
    Sorry again for going silent..
    I have been on Facebook bouncing around from the hair loss groups to celiac groups to hormone groups to mold toxicity groups to AIP groups to high histamine food groups.. Been running from doctor to doctor.. Even flying to other states to see private practice doctors.. Test after test.
    Spending all my time trying to understand what’s happening to me, what’s wrong with me.
    I feel like a crazy person.. I’m tired...
    My dermatologist says this is CTE. But my honest opinion is it’s CTE that will just uncover Androgenetic Alopecia... Because we can’t get the shedding under control..
    Sorry again guys! Hope you are both well!
     
  4. AMF927

    AMF927 New Member

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    How is a mold toxicity test done?
     
  5. Barbarina

    Barbarina Established Member

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    Sad world we are living in. Yesterday I bumped in my gym in this girl whom I mentioned in this post and called it "sucess, but not mine". Her hair which was brittle thin blond fm over-coloring it 5 years ago seems to go fm strength to strength - waist long, nicely layered and wonderful colour too - fm peroxide blond she is now dark honey blond. I went again into constant denial, my hairfall stopped again, so I decided to put hair extentions again just to get back for a while this Wow feeling when I look in the mirror. So far as it seems my hair loss which started sometimes in winter 2013 tends to last for several months, than stops without regrowing really, or what grows back is cotton candy thin and not longer than several inches, when they grow longer beneath my chest they are getting brittle and so thin that it looks extremely badly groomed. I measured my ponytail the other day after my hair fall stopped and yes, I lost again some volume. When the nightmare started in 2013 its diameter diameter was about 4 inches, now it is 3.:mad:
     
  6. TinaM1968

    TinaM1968 Established Member

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    Aww I was hoping your absence meant things were better. Sending you big hugs and lots of prayers ❤️
     
  7. Silvi

    Silvi Member

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    This hair loss thing is so upsetting for me I have had it on and off since I was 17 and now I am 37 all I want is to look “normal” I wish the best for you all !!!
     
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  8. Barbarina

    Barbarina Established Member

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    Hello, Ladies !

    Do not want to bore nobody again with way too long posts, because we all know that to find a reason behind hair loss/ crazily fast progressing Androgenetic Alopecia is very difficult.
    Just wanted to say, that while my hairloss which intensified in the mid of June this year and was ever so strong due to non-stop stresslevels and God knows what else, seemed to slow down since I cut off artifitial sweetener Aspartime fm my diet. I took it non stop for more than 20 years, because I discovered in my early 20s that the less shugar - the slimmer you stay. But, boy, do I love my morning coffe sweet ! Anyway, I am only in my 4th week of that aspartime-free experiment, early to say anything definite yet, but it seems that the worse hairloss slowed again. Still - strongest hit are same parts - temples and now also my bangs. WIll keep you posted
     
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