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Symptoms of diffuse alopecia areata?

Discussion in 'The Undiagnosed' started by Paulina, Apr 9, 2010.

  1. Paulina

    Paulina Guest

    I took it for a few months but it seemed like my symptoms were getting worse so I stopped. I realize now that it is the infra red sauna that makes me worse...when I use it I get really sick and lose a ton of eyebrows. Literally overnight. I am going to start the liquid glutathione again I think though.
     
  2. emrob0

    emrob0 Guest

    Thanks Paulina. That's what's so hard with the hair loss - we introduce something new and don't know if this is making the hair loss worse or whether it is just getting worse anyway - hope that makes sense?! My derm initially put me on a topical steroid.I used it for 3 months then I thought it was making the hair loss worse so I stopped. Looking back, I had a period of 2 months where the shedding seemed to get back to normal. This was exactly 3 months after starting the steroid so now I don't know if it was having an effect after all??!! All so fustrating. Well as I said I am definintely starting Glutathione...it's on its way. I feel that there is so little help/acknowledgement from the medical professionals that clearly I need to take matters in my own hands a bit....at least I feel I am doing something pro-active. My latest mould tests on the property came out good-NO Aspergillus detected.
    Paulina - a couple more questions - have you been given a definite diagnosis for your hair loss? I was told TE or diffuse Alopecia Areata. Also for you and karenj - is your hair loss completely diffuse?? I have another question for Paulina....but will PM you for fear of sounding like a crazy woman on the forum!!!
     
  3. Paulina

    Paulina Guest

    Hi emrob0,

    You are so right. Doctors just have no clue about this and it is so frustrating...at times downright depressing. I have lost so much faith in doctors over all of this. I no longer see them as "authority" figures in healthcare because I have been told everything from "mold doesn't cause hair loss or night sweats or any of your symptoms" to "you are making all of this up for a lawsuit aren't you? I have seen people in a lot more mold than you and they are not sick like you"...I have been through it ALL. And all I wanted was help for my daughter and I. No lawsuit...at THAT point! There is now. But I digress. Ya, I have had to take matters in my own hands from day one it seems. I want to answer your question....I had been told by doctors in the beginning that I had no hair loss problem. Same with my daughter. Then as it got thinner and thinner I was told by some doctors that I had Telogen Effluvium and it was stress from my divorce and I was also told by other doctors I had Androgenetic Alopecia....saw many dermatologists because I KNEW I wasn't that stressed over divorce. I was so glad about divorce! My marriage was the nightmare. So I kept looking for other answers. Then I found the mold. I started losing my eyelashes and eyebrows too...also hair on my arms and legs...etc. I was at one point diagnosed with rare diffuse alopecia areata by one dermatologist. He gave me a scalp biopsy to confirm it. I told him the same thing was happening to my daughter and there was no way we could BOTH have this RARE condition that started at the same time. Sure enough, biopsy showed chronic telogen effluvium. My hair follicles are just fine. No alopecia areata and no Androgenetic Alopecia to speak of. In fact, my hair loss so bad that a whole team of pathologists looked at my biopsy slide...it was on my report...ALL confirmed diagnosis of TE. I will tell you this...something strange...I started taking birth control pills...YAZ...one with an anti androgen and estrogen...and my hair loss has slowed way down and my eyelashes are growing back a little. I did not anticipate this or take the pills for this reason but this is what happened. ??? But I don't have Androgenetic Alopecia as a whole team of pathologists determined so what up with that? I can only say that when I was living in the toxic mold (aspergillus), I had total hormone problems. I was growing sideburns and a little bit of a beard! I also lost my period almost entirely. It caused major hormone disruption. It all came back to normal within a few months of moving out. CRAZY. So is some of this hormonal? I just don't know. Please ask me any question you like in a private message. I assure you of one thing....all of us on this thread who have been exposed to toxic mold will never think you crazy. I promise you that! :) XOXOXOXOXO
     
  4. Paulina

    Paulina Guest

    Hi All ....I wanted to leave a couple links regarding using liquid liposomal glutathione...very good information. Just keep in mind this isn't an overnight cure. Plan to use it for 6 months to a year...or as long as your doctor prescribes it.

    I wanted to share something else with you all. I own an infra red sauna and my daughter and I used it to detox a while back...we lost a ton...and I mean a ton...of hair when we did. Right away. Not three months later. I lost a bunch of eyebrows too. I felt really sick after some of the sessions...especially the ones where I exercised before hand. My daughter got painful swollen lymph nodes under her arms literally right after the first time she went in. They took over a month to go away! These things work very well at detoxing...the problem is they work TOO well. It was releasing more toxins than our bodies could process and get rid of (especially with depleted glutathione) so the toxins get redeposited and end up just re-offending your body as they do. This is why we got a lot worse when we did this. So, our plan now is just to exercise (to slowly release the toxins) and to take the liposomal glutathione every day. If we use the infra red again....and we may down the road....it will be for short durations of 10 minutes or so. Not much more.

    So, here are the links about Liquid Glutathione:

    http://groups.google.com/group/mold-cen ... lutathione

    http://divinelytoxic.blogspot.com/p/cha ... -diet.html


    And here is a good one I came across today about the effects of Toxic Mold in general:

    http://truthaboutmold.info/health_effects


    Love and big hugs to you all!!

    Paulina
     
  5. neworiginal

    neworiginal Guest

    Can DAA cause all the hair follicles on your body to miniaturize? I cannot find a single hair on my body that is its original thickness, the strange thing is that I still have a bunch of hair on my arms and legs but its become thin and whispy. Is this an early sign of Universalis?
     
  6. Paulina

    Paulina Guest

    Hi Neworiginal,

    I am really sorry for what you are going through. I don't know much about alopecia universalis other than what it is. I know about exclamation point hairs and I know that it involved all hair on the body...but I am not sure if it causes thinning of the hair before the hair is lost. I really hope someone who reads this will know and be able to give you some answers. Were you diagnosed by your doctor with this or are you trying to figure it out at this point? I know how hard this is to cope with and I hope and pray that this reverses for you and I hope you will keep us posted as to how you are doing and what you find out. All the very best to you.

    Paulina
     
  7. Paulina

    Paulina Guest

    Hi Everyone sick from mold,

    I came across many studies online today about glutathione and gliotoxins that are troubling me. I don't want to concern anyone but feel this information should get out there and be looked in to. The info I saw seems to be saying that glutathione WORSENS cytotoxicity in people sick from certain types of mycotoxins produced by Aspergillus...specifically gliotoxin. It seems to be saying glutathione actually helps the gliotoxins proliferate and when glutathione is depleted, the cell dies (aptosis) and it moves on to the next neighboring cell. I know a lot of us are taking glutathione to help with our mold sickness. I encourage anyone sick from Aspergillus to print this out and ask their doctor about it. Normally glutathione detoxifies your body but with this particular mycotoxin from Aspergillus...gliotoxin...from what I read it seems to be saying glutathione actually helps it... if you are sick from Aspergillus toxic mold and taking glutathione, please ask your doctor to look in to this. See this link. If the link doesn't work...it might not since it is a journal article abstract....just google "gliotoxin glutathione" and you will find several studies saying this. I am not sure this particular link will work so I am going to copy and paste one of the important sentences from the abstract below in quotes.

    "These results indicate that glutathione promotes gliotoxin-induced cytotoxicity, probably by reducing the ETP (epipolythiodioxopiperazine) disulfide bridge to the dithiol form"


    http://www.springerlink.com/content/jkn4n5508831w682/


    I wanted to update this by stating what I have found in my own research (and will confirm with my doctor): Glutathione may not be helpful if you are made sick by gliotoxin...one of the mycotoxins produced by Aspergillus...as shown above. However, NAC completely stops the bad effects of gliotoxin in it's tracks. I have seen numerous studies that state this as well and an interesting thing is NAC eventually turns into glutathione (a precursor) but in it's original form seems to be very helpful if you have gliotoxin in your body. Though NAC turns in to Glutathione in the body, they are very different...glutathione is a "thiol"...(glutaTHIOne)...NAC isn't and that, from what I read, seems to make all the difference. Gliotoxin is a "dithiol." Keep in mind Aspergillus also produces aflotoxin which glutathione may be very helpful for....they are two different mycotoxins. As far as I can asses, the glutathione is only not helpful for gliotoxin induced illnesses and problems. How do I know that it is gliotoxin an not aflatoxin that made my daughter and I sick and lose our hair? Well, I don't know for sure. But I can say that from what gliotoxin does to people, this seems to be the answer. It fits for us. Gliotoxin causes immunosuppression. My daughter had an immunodeficiency that was confirmed by a blood test. She didn't have this before. Also, gliotoxin is antiviral...I used to get the flu at least twice a year to where I was in bed for a week each time...plus several colds...since I have been exposed to Aspergillus and got very sick from it...been 3.5 years...I have not had one single bout with a cold or flu. Not one. I thought my immune system kicked in to overdrive fighting this stuff and just stayed. Now I am thinking it could be the antiviral properties in the gliotoxin. Also, as for hair loss...gliotoxin has anti-mitotic properties and is being studied to be used in chemotherapy (if you can believe that!). That means it keeps fast dividing cells from multiplying. Cancers are fast dividing cells...so is your hair! My daughter and I had Pohl Pinkus hairs growing out of our scalp...very rare...only caused by 3 things...chemotherapy, having a major surgery, or having a major systemic illness....well, we had a major systemic illness for sure but perhaps it could be the anti-mitotic activity of gliotoxin that caused it (chemotherapy-type activity)? I don't know about that because we were very very sick so the sickness itself could have caused it but it's a viable theory of sorts. Anyway, Aspergillus produces several kinds of mycotoxins depending of the kind of Aspergillus. The most prevalent kind (80%) is Aspergillus Fumigatus and that produces gliotoxin. I am not sure if it also produces aflotoxin. If you were made sick by Aspergillus, you may want to try to figure out by your symptoms if you are sick from aflatoxin or gliotoxin. As far as treatment goes...there may be a significant difference. I am not an expert so please run all of this by your doctor. Ask him or her to do some research. It won't kill them to do their jobs. Don't be afraid to ask. I am not a doctor and don't play one on tv, but I have researched this tirelessly for 2 years now and feel like I know a lot more than my doctor...that's because I DO...and that makes me...not happy. Shouldn't be that way. Shouldn't be necessary. Ok, enough of that. Here is the important paragraph from one of the journal articles I have read about NAC and the link to follow. You can google "N-acetyl cysteine gliotoxin" to read all the other studies on the same thing. By the way, ALL this information comes from very credible websites...not Wikipedia and the like.

    "N-acetylcysteine (Fig. 9C) dramatically reduced the levels of reactive oxygen species. N-acetylcysteine decreased the levels of reactive oxygen species below control levels, most likely due to reduction of the endogenous reactive oxygen species levels. The antioxidant also totally abolished the cytotoxicity induced by gliotoxin (1200 ng/ml) at as little as 5 mM (Fig. 10A), which was associated with a complete inhibition of caspase-3–like activity (Fig. 10B). N-acetylcysteine also abolished TNF-?–induced cytotoxicity in the presence of gliotoxin as well (data not shown)."

    Note...If you read the article, you will see that the reactive oxygen species and caspase-3-like activity are what damages and kills the healthy cells...NAC decreased the ROS dramatically...below control levels (!) as the article says...and completely inhibits the caspase-3-like activity. I have read the same thing in other independent studies. I can't believe we are talking about all this on a hair loss website but seems several of us here need this info.

    Full article:

    http://www.ncbi.nlm.nih.gov/pubmed/10746946
     
  8. karenj

    karenj Guest

    Hi ladies -- for the most part my hair loss is completely diffuse. It's definitely thinned out the absolute worst on the top though for sure, probably the top and the sides, which used to be SO thick. This all started a year ago I just cannot even understand how it's possible to lose so much hair in that amount of time, I just wish I had known what i do now a year ago.. I would do anything to go back. I just actually bought a vitamin b complex, also a multi-v specifically for hair/skin/nails, i'm hoping SOMETHING will help. My hair seemed to be doing much better after using hair essentials from natural wellbeing (been on for about 6 months now), especially now that I look back a few months or look at pictures from then. Recently we started using the AC, and for some crazy reason I felt like I was feeling worse when I would wake up in the morning, and just had a gut feeling that there was SOMETHING in my room, bc i noticed more hair falling out and just felt more disoriented/dizzy when I was in there. I ended up moving to another bedroom and went back in there one day my mom noticed a huge leak coming from the AC vent. Ever since then my hair has literally been coming out in CLUMPS again :( The last time this really happened was probably back in october/november, and no matter what i do nothing is slowing it down. I've probably been losing 100-200 a day now, atleast. Back in october I could afford to lose that amount of hair, but I barely have any to work with now that I've already started looking at wigs - so devastating, especially because I thought things were finally beginning to look up, and felt like my hair was falling out at a normal rate. So upset..

    Is there any kind of shampoo/supplement that will help with this? Is this an allergic reaction, or maybe because I'm too toxic? I just wish I knew the cause so I could figure out how to treat it, but just seems like nothing I'm doing it working anyway. Trying to stay positive though, i'm just feeling more and more insecure and heartbroken, and just can't stop crying no matter how much i tell myself it's going to be ok. My mother is also starting to experience some hair loss also, but not nearly like i am..

    I started taking some gingko and chlorophyll today also, since i've heard that they could help with hair loss.. Not sure what else to do at this point honestly. :(
     
  9. karenj

    karenj Guest

    Paulina -- i forgot to mention that back in October-December I was doing the infrared sauna about 1-2x a week also. I also noticed that i was losing a LOT of hair, and for some reason i felt even dizzier when i was finished. I actually stopped doing it because i felt like it was making me worse, or my hair worse atleast. Definitely a connection there!
     
  10. Paulina

    Paulina Guest

    Hi KarenJ...boy I sure do know that roller coaster ride you are on. It IS devastating. When you think everything is ok you are almost on this "high" and when you realize it is not ok...it is so demoralizing and depressing. It is so hard. I really DO understand. I am not sure the liposomal glutathione is the answer at this point. I read about gliotoxin for the very first time today...I have been dealing with this for years now and I am JUST learning about gliotoxin. I think this is what is causing our hair loss (me and my daughter's)...I don't think it is aflatoxin as I had once thought. Gliotoxin is produced by Aspergillus. I just found out today that Glutathione (which is excellent to detox literally ANYTHING else) is not something to take for detoxing from gliotoxin produced by aspergillus because the "thiol" group in GlutaTHIONE feeds the gliotoxin. From the two different studies I read about today...the antioxidant actually helps the gliotoxin proliferate. Perhaps this is why I lost so much more hair (and my daughter) when we took it a while back. I forgot and started taking it again! Thank God this is only day one. I am going to take those studies to my doctor and have him look at them before I take anymore Glutathione and I am going to start asking questions about GLIOTOXIN an how to rid myself of it. I am also going to start taking things to boost my immune system and get serious about exercising to boost my immune system as well. This is just ME...please be sure you do what your doctor tells you. I have just learned over time that I know more about the doctors about this stuff. I mean, my doctor is a specialist in environmental toxins and he prescribed me the Glutathione and he knows I was sick from Aspergillus. Clearly he has no idea about these studies. He is about to. Big sigh.

    I am so sorry all this has happened to you. It is so unbelievable how devastating all this is to our health...and our hair (falling out) is what we SEE....I fear the things going on inside my body that I cannot see as well. For example...I never get sick anymore. I used to get sick at least a couple times a year. Now I literally NEVER do. It is NOT because I am so healthy now and super immune! It is because...so I was told by a doctor and just read again...to get a fever takes energy and my body cannot spare the energy to give me a fever and get me sick to fight the germs (that's what getting sick is) so my body harbors the viruses. So, when I get sick again does that mean I am getting better? This whole thing is so crazy and demoralizing. Just when you find an answer you have more questions. I too think I will be in a wig by Christmas. It breaks my heart like only YOU...and others like us...could know. I pray for all of us that ONE of us finds the answer...the solution. If I do....I will post it to everyone here ASAP.

    I wanted to ask you about the infra red sauna experience you had. I used mine at about 125F for about a half hour to 45 minutes. At what temperature and length of time did YOU use it? I am wondering if we need to detox MUCH slower. I think this thing works TOO well and puts too much of the toxins in our bloodstream. I am thinking about going 10 minutes at about 105 and seeing what that does. The man who owns the company I bought mine from told me don't go over 105 for detoxing. I never listened. I am going to email him tonight and ask him why he recommended such a low temp. I will let you know what he says. All we can do is all we can do right? Keep your chin up KarenJ...we WILL figure this out! XO
     
  11. karenj

    karenj Guest

    Hiii Paulina,
    I cant remember since its probably been about 8 months since ive used the infrare sauna, but i do remember using it at 115 a few sessions and then increasing it to 125 bc i felt like it wasnt doing enough, even though youre not really supposed to be able to tell. I did it for about 20-30 min if i remember correctly, but could be wrong.

    The giotoxin sounds really interesting, i wish i knew what the true cause of the hair loss was. I literally must have lost 300 or 400 hairs today after showering, i seriously just dont understand. I was doing so well for so long and i guess once that leak in my room happened a month ago, it just caused my hair loss abd my other symptoms to sky rocket again. Im trying to detox a lot, and im not sure if i should wash my hair with a good stimulating shampoo/conditioner every other day, or hold off as long as i can w washing my hair since it seems to make it SO much worse :( i actually was talking to my ex, who knows what ive been going through (and also wants to get back together) - he couldnt believe the amount of hair loss and actually showed his mom the shower drain and the garbage in the bathroom bc he was so concerned. Needless to say she also was really upset and worried saying that i should move back in and am welcome to stay because i need to get better. His family is wonderful but i just know in my heart i dont want to be w him so its a tough situation, esp bc hes trying so desperately to get us back. It reminded me of your situation bc i know you had said you also had moved back in with your ex. At this point maybe i just need to do it.. Esp if it means ill get better.

    The good news is i DID find a decent wig (raquel welch) if i end up losing hair at the same rate and need to buy one - its actially really pretty from what i can tell and looks pretty natural (i hope) - but an really hoping it doesnt get to that point just yet!!!! Thank god for toppik is all i can say, and clip in hair extensions, but that will only cut it for so long haha cannot believe my life has even come to this! Just glad i have others who can relate ;)

    Also, are you on any special diet or any meds/supplements at all??


    Xo
    Karen
     
  12. mycurlyhair

    mycurlyhair Experienced Member

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    lol and THANK YOU so much for bringing this up to top. I never saw this post and really needed to see it. I recently found mold in my basement (they musty smell is so much worse then what I am seeiing though) and both my daughter and I are shedding alot lately and am really thinking maybe this has something to do with it because my hormones are off now too and I have been really itchy and my daughter has been dizzy! This is such a pain in the A$$ and expensive to tackle. I have so many mold questions! I hope the girls are still around?
     
  13. mycurlyhair

    mycurlyhair Experienced Member

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    Are these girls still on the forum?? Is so, can you please do a update? I have alot of the same symptoms and also my teen daughter is shedding alot and also having symptoms. I am thinking of having a mold test done to see what they can find before I have it all cleaned!
     
  14. Joann

    Joann Moderator

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    Hi mycurlyhair,

    If you check their profile pages you will be able to see when their last visit was to Her Alopecia. If any have visited recently you could always send a PM to them. Some of the long time members do check in but no longer post very much. I'm sure they would be glad to answer any questions you may have if they are around.
     

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