Hair Loss and NO ONE can help - can you?

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lymiemom
New Member


Date Joined Jun 2009
Total Posts : 4
   Posted 6/29/2009 3:41 PM (GMT -6)   
My hair has been falling out over the past year but I'm indeed losing all of it and I see no new growth. I've been to two different LLMD's and they both feel it's the thyroid, I've been on the medication for 2 years now and when I'm tested my results seem to be good. It's coming out in clumps and all my other lymie friends haven't experienced this, has anyone? Any information would help, I've always had long blonde hair and I have lost over 3/4" of it and it's still coming out in handfuls, especially after my showers. Thank you!

Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4399
   Posted 6/29/2009 4:54 PM (GMT -6)   
Has anyone checked your Vitamin B12 levels lately? Should also request methylmalonic acid (MMA) levels and homocystien levels, as these indicate Vitamin B12 useage in the body and may be better indicators of tissue B12 status. Vitamin B12 deficiency can cause loss of all body hair (everywhere...not just on the scalp).

Also, hair loss tends to occur more easily when the body has been under severe stress (such as a significant Lyme Disease flare or herx), when protein intake or absorption is not adequate, and in the setting of silica or biotin deficiency (& probably other deficiencies contribute). Other conditions may also contribute/cause hair loss, such as skin infections where hair grows, or autoimmune conditions in which the connective tissue and/or skin is affected. Medications can also cause hair loss as a side-effect.

It might be good to talk with a dermatologist about this and see what s/he has to say. I hope this helps - take care,
-Razzle
Chronic Lyme Disease, Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, Pancytopenia, chronic malabsorption/malnutrition, etc.; G-Tube; Currently TPN-dependent.
Meds:  Zofran, Pulmicort, IV Ceftazidime, Heparin (to flush PICC line), Claritin, Colloidal Silver (used topically), probiotics, homeopathy.


ticker
Veteran Member


Date Joined Feb 2003
Total Posts : 9208
   Posted 6/29/2009 5:20 PM (GMT -6)   

Hi lymiemom, welcome to the board!  I am sorry you are having this symptom, I know it is very upsetting.

Both Lyme and thyroid disorders can cause hair loss.   It is important to get the Free T3, Free T3 (besides the T3 and T4) and thyroid antibodies tested.  Have you had these levels tested?  Many doctors do not test these levels and treat only by the TSH result.  If antibodies are present, it can indicate Hashimoto's Thyroiditis which is an auto-immune thyroid disorder.  Some people who have Lyme have this.  Lyme and hypothyroidism have many similar symptoms. 

Do you have a copy of your latest thyroid results?  Which thyroid medicine are you taking?  Some thyroid meds such as Synthroid is a T4 only med and meds like are Armour are a T3 and T4 med.  Some people do well on one type, some on another.  Depending on what your Free T levels are, you may need an adjustment in your thyroid medication.  It took me a long time to find a doctor who could properly treat my thyroid and who worked with my symptoms, but it can make a big difference.

Have you ever had your cortisol and other hormone levels tested?  Lyme can affect all of these levels.  It is my understanding that saliva testing is more reliable than blood testing.  If you want information on saliva testing, let tme know.  


james from missouri
Regular Member


Date Joined May 2009
Total Posts : 432
   Posted 6/29/2009 5:29 PM (GMT -6)   
i started to lose my hair last year, i was on propecia for about 6 months, its really expensive, about 230 for a 3 month supply, you have to take it everyday, i just think its due to family genes.. i stopped taking since everything else i'm taking..

Pomfrey
Regular Member


Date Joined Nov 2007
Total Posts : 23
   Posted 6/29/2009 5:43 PM (GMT -6)   
I lost about half of my ponytail at one point, it was very traumatizing!  I was shopping for wigs, had hair samples sent to me and everything.  I went to a doc here, didn't know I had Lyme - thought it was Lupus, but he treated me with Synthroid and a Testosterone implant in my hip.  He did a lot of the non-standard tests for my hormones and thyroid and that is how he decided to treat me the way he did.   It did help, it took a while though.  My ponytail is back, yay! 

james from missouri
Regular Member


Date Joined May 2009
Total Posts : 432
   Posted 6/29/2009 5:46 PM (GMT -6)   
yeah, i could've been infected with lyme a long time ago.. and just never knew it....

powel
New Member


Date Joined Jun 2009
Total Posts : 2
   Posted 6/29/2009 5:58 PM (GMT -6)   
WEll if you are a guy and is in the begining stage of Lossing hair pls get Propecia by MSD or Regain by PfiZe. These are the 2 brands have gone thru scientific big scale studies. Beware on Myth or traditional believes these are not proven therefore you don know whether you are paying for the right stuff.

Martha's Vineyard
Veteran Member


Date Joined Jul 2008
Total Posts : 1119
   Posted 6/30/2009 11:33 AM (GMT -6)   
I too had this terrible thing happen to me. I had to cut all of my hair off to the root. It all comes back though when you get better. It is not gone for good.
abx in high doses can do this to you.
Mine has all come back now.
2004 in Martha's Vineyard me and my two daughters then 11 mos and 6 all got Lyme Disease. This was only known to us because we found the tiny ticks on us and we got very ill. My dog also got lyme and he went lame.
We have fought it for 4 years to no avail.
We all got it again this summer is Texas.
I am now in treatment in Scottsdale Arizona at Envita.

"The eyes cannot see for for what the mind does not know."


Martha's Vineyard
Veteran Member


Date Joined Jul 2008
Total Posts : 1119
   Posted 6/30/2009 3:20 PM (GMT -6)   
What drugs do your LLMD's have you on? If it is a ton of oral abx then that is your problem right there.
2004 in Martha's Vineyard me and my two daughters then 11 mos and 6 all got Lyme Disease. This was only known to us because we found the tiny ticks on us and we got very ill. My dog also got lyme and he went lame.
We have fought it for 4 years to no avail.
We all got it again this summer is Texas.
I am now in treatment in Scottsdale Arizona at Envita.

"The eyes cannot see for for what the mind does not know."


lymiemom
New Member


Date Joined Jun 2009
Total Posts : 4
   Posted 6/30/2009 3:41 PM (GMT -6)   
Thank you all for your time and education, I don't even know where to begin, but thank you, I will try it all!

Cmacaran
Regular Member


Date Joined Aug 2008
Total Posts : 105
   Posted 6/30/2009 5:41 PM (GMT -6)   
My wife had a lot of hair loss with her lyme. She Just keep treating the lyme and as she improved it went away. IV Rocephin, lots of vitamins, herbals, detox, I have to say do it all.  Also she says Biocil from Natrol for collegen support 2x a day.

bookfreak
Regular Member


Date Joined Oct 2007
Total Posts : 46
   Posted 7/1/2009 9:08 AM (GMT -6)   
Look at the medications you are on. I took antibiotics for lyme - a variety of them. It wasn't until I was put on Mycobutin/Biaxin that my hair fell out. This happened to me about 10 months ago. When you are in the shower is when most of it comes out. I lost about 50% of my hair.
 
Antidepressants and many of the birth control pills they give women nowadays also cause hair loss. If you go to hair loss forums you will see a lot of people, particularly women, who are experiencing this from medications.
 
My hair loss didn't stop until I stopped the antibiotics. After that it took at least 4 - 6 months for my scalp to feel better and then to really see new growth. It's been 9 months and my hair is FINALLY starting to look better but I am realizing now that my hair won't be "normal" again until probably the 2 year mark.
 
My heart goes out to you. People just don't understand the horror of this until they go through it. My family would look at me like I was nuts when I complained about it. When your hair thins, other people don't really see how bad it is - unless you have alopecia where there are bald spots - they still see hair so they think you are okay.
 
It wasn't until I pulled a 3 inch thick chunk of hair out of my shower drain (it looked perfect - just like a shiny ponytail - not the gunked up hair that is usually in drains) and showed it to my family did they realize what I was going through.
 
I can't give any other advice except to say to REALLY look at your medications - that is probably the culprit. Yes, I have heard of people shedding from lyme but not like you are describing. The medications might also be damaging your thyroid. My LLMD told me that medications cause it and basically asked me "do you want your hair to grow back?" and I said "HECK YEAH!" Then he told me I would have to go off the medications in order for this to happen. So I did. I use rife for lyme now because, for me, that horrible, awful, sickening hair loss was just too much.
 
I hope this helps.

twingirl
Regular Member


Date Joined Feb 2007
Total Posts : 323
   Posted 7/1/2009 9:09 AM (GMT -6)   
My hair loss was due to extremely low testosterone levels. The hair on my legs completly disappeared and the hair on my head became very thin.

Since taking the testosterone, my hair is back to normal.

There is a thing called Alopecia too where you can lose your hair. It is usually temporary. I hope you can figure out what is causing yours and that it is temporary.
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