Please help me, I have been loosing my hair since January. If anybody has lost hair from lyme disease or anything else please tell me about it.
I am very sick with chronic neurological lyme disease and bartonella (two types). I only have about 1/10th of my hair left on my head and its getting worse. Clumps will fall out like I am going through chemotherapy or something.
My eyebrows are no longer growing hair and they keep getting thinner as well as the rest of my body hair. Ever day I wake up and my pillow looks like theres a wig laying on it.
Here are some things I have noticed: -My hair always comes out from its root
-My hair looks like it has dandruff although it doesnt
-My hair went from being oily to becoming increasingly dry before the hair loss occured (I could probably go months without washing my hair and it would look just fine)
-My hair loss is diffuse and throughout my entire head and body
-Anytime I touch or scratch my scalp hair in that section falls out.
-Right before my hair started falling out I had a toxic reaction to provigil and thought it could be that
-I have been on many medcications that cause hair loss in the past and have many hormonal issues
I saw a dermatologist who told me I was fine and my LLMD just told me I could loose all of my hair. I talked to him today and he said something about the hair follicles dying and shrivaling up? IS this true? Does this meen my hair will not grow back again? Is there anything I can do to help myself?
I am not sure if I heard him correctly but I have been told I am one of the sickest patients he seen and hes a great doctor. I do not know what to do. I have so many symptoms but I think this one is causing me the most problems.
If this is true then my hair will not grow back so it is very troubling to me. Any input or suggestions would be very beneficial and appreciated.
Thanks, Lindsay
Posted by Hoosiers51 (Member # 15759) on :
I would get your hormones checked out.
I saw a TV show called Mystery Diagnosis about someone with adrenal issues, and she was having hair loss on her body. I think the disease was Addison's, and to diagnose it, you need to test the ACTH. But I might be remembering wrong....it is something to look into.
Hair loss or dry hair makes me think of hormonal problems though. And adrenal issues could also explain why you had a strange reaction to Provigil...maybe it was too much of a stimulant for you.
And endocrinologist would be the person to see about that stuff.
Just run the meds by your Lyme doctor before taking them, because steroids are only supposed to be used by people with Lyme in lower doses.
Posted by blaze (Member # 16838) on :
I experienced similar hair loss. Not only did my head hair fall out, but my eyebrows thinned out, too, though I noticed an increase in eyebrow hairs well below where the browline was located, so I had to pluck frequently.
It's one of the symptoms. I have this theory that the hairs on the head act as individual antennas, and when too much electricity is going in, the body sheds hair to compensate for the overload. I think it's interesting that the symptoms of this environmental illness are identical to those of Lyme.
Posted by Amy08723 (Member # 21564) on :
It could be alopecia. A relative of mine has alopecia universalis, which is all the hair on the body.
He has no hair, lost it about 15 years ago and it has never come back yet.
The alopecia is an autoimmune disease.
Posted by sixgoofykids (Member # 11141) on :
I lost a lot of hair with Lyme. It would come out in handfuls. Fortunately, I have thick hair so it just looked thinner. I only washed it twice a week and didn't brush it (my hair is curly, so I'd just style it with my fingers and wore it up a lot). I couldn't do anything with it because what didn't fall out would break very easily.
It came back as I got better.
I agree that you need to look into other things to rule them out. It can be due to thyroid.
Posted by TO LIFE (Member # 12371) on :
Is your scalp really tight?
Do you notice any circulation problems??
Posted by Pinelady (Member # 18524) on :
Hormones, esp. thyroid.
Posted by Lauralyme (Member # 15021) on :
I lost alot of hair too....but happy to report it has all grown back. I lost about 35% on my head and alot from my eyebrows and forearms.
Have you tried Evening Primrose Oil? That can be helpful.
I am sympathetic with how you feel. A woman's hair plays a big role...it was distressing for me at the time so I can appreciate how you are feeling.
Posted by HaplyCarlessdave (Member # 413) on :
Hi, LuLu! I didn't have too much trouble with hair loss, but I did start getting gray spots in my beard! (I guess thats not all that odd in your late forties though...). One thing that could well be a factor in hair health is nutrition; fighting the lyme etc. might use up nutrients that keep hair healthy. I'm not exactly sure what these are, but I suspect there has been lots of research on hair health and nutrition. I hope that you can find the best thing for it real soon! DaveS
Posted by lou (Member # 81) on :
My hair loss was related to thyroid. Many lymies have thyroid problems and the average endocrinologist will not find them because they typically use only TSH testing, not free T3 and free T4. And the only solution they have is synthroid, which does not work for everyone.
Have you had any thyroid testing?
Also, other endocrine glands may have problems, like adrenal.
Posted by sunnymalibu (Member # 9586) on :
Another reason for hair loss is that the scalp forms autoantibodies. The body then attacks the hair follicle. I saw a dermatologist on TV who found autoantibodies in the scalp of people with hair loss. Can be treated with topical anti-inflammatories.
Posted by VB (Member # 16824) on :
I lost a good amount of hair... didn't realize how much until it started growing back. Now I have clumps of new hair appearing all over.
I am fortunate to have a TON of hair, so it blends.
It was the addition of amoxicillin that made it grow back. 2grams/day to start. Now at 3g and adding probenecid. I am on other abx too, but for some reason the addition of amoxil was what helped.