Hair Loss ?!?!

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Regular Member

Date Joined Sep 2006
Total Posts : 364
   Posted 12/5/2008 10:25 AM (GMT -6)   
I had some mild hair loss for a very short period of time when I first had Lyme, but now it has been months and I am continually losing hair (small handfuls in the shower and it falls out everywhere) - as other symptoms have started to come back. I have had doctors tell me it could be other things - stress, my intestinal problems, etc. - but could it just be LYME!?!? I have ordered my antibiotics and will start when they get here (the mepron was too expensive through the pharmacy!) I am blessed with thick hair - but still don't want to lose so much I look like a twin to my poor husband who is going bald (I know there are much worse symptoms- but still my hair?!?) Anyone else have this?

Thanks - I can always come here to the "experts"!

Dan's Mother
Regular Member

Date Joined Feb 2007
Total Posts : 189
   Posted 12/5/2008 11:09 AM (GMT -6)   
I, too, am experiencing some hair loss, but my 24 year old son, has lost quite a bit of hair.  He used to have a full head of hair, but now you can see his scalp and his hairline is also receding.  I wonder if it is the drugs or the disease?  Karen

Veteran Member

Date Joined Jan 2007
Total Posts : 2446
   Posted 12/5/2008 11:14 AM (GMT -6)   
Leah, I've been sick for many years and only started to lose my hair 3 1/2 yrs ago.
I'll go through weeks of losing hair, then it stops for weeks.

I notice when I'm going through periods of high inflammation, my hair falls out. Of course it could be stress, but who the heck isn't stressed from being ill.

whether I was on abx or not, I was losing hair. Now that I'm not on any meds, it still happens.
The world breaks every one and afterward many are strong in the broken places

Regular Member

Date Joined Apr 2008
Total Posts : 266
   Posted 12/5/2008 11:22 AM (GMT -6)   
I too have been losing a lot of hair in the shower. I have been treating for 1 1/2 years now and I noticed that when my meds weren't working and I was still getting sicker that's when I see more hair loss. I have added on biaxin for a month now. It seems like a wonder drug for me. I can tell it is killing stuff. So, now I will see if my hair stops falling out in the next month or so. I blame my hair loss on bart. It's when this is flaring that my drains keep getting clogged.

Regular Member

Date Joined Oct 2007
Total Posts : 315
   Posted 12/14/2008 10:34 PM (GMT -6)   
I am going through this too!!! I lost a lot in the beginning before I knew what I had. When I was dx by my LLMD he said it was so common in Lyme patients due to low thyroid even though my panels tested fine. He put me on armour thyroid and I started treatment and it went away, that was almost 16 months ago. I went off them when things were good and my hair was fine. Recently it has started falling out again in the shower. Panel checked out fine like it always does, however I have been very cold, which is another classic sign of low thyroid and I am depressed which can also happen with low thyroid. So back on the aromour and antidepressants.
I would check with your LLMD on this. It is a slow acting pill so it takes some time to find how much it takes. Good Luck, I know it sucks I always cry when I wash my hair.
One day at a time~

Regular Member

Date Joined Apr 2008
Total Posts : 266
   Posted 3/5/2009 1:08 PM (GMT -6)   
This is an update for those looking up hair loss. My hair has finally stopped falling out and I attribute this to being on the right meds. But instead of the month I thought it would take it has actually been 3 months. So hang in there. It can take awhile.

Veteran Member

Date Joined Oct 2007
Total Posts : 1172
   Posted 3/5/2009 1:55 PM (GMT -6)   
Hey there. I'm sorry your symptoms are coming back. Did you test posative for co-infections? Are you still seeing Dr. P? Did he prescribe the meprom for you? He dosen't talk much about co-infections, I wish he would. I think I have them also because my symptoms are not improving much even after 6 mos. of IV rocephin. I will be starting IM bicillin mon. I tested negative for co-infections and I guess that's why he doesen't want to treat me for that. I am going to talk to him mon. about trying something for co's. Thanks    

Regular Member

Date Joined Sep 2006
Total Posts : 364
   Posted 3/5/2009 2:17 PM (GMT -6)   
well my symptoms were coming back and I convinced him to put me on doxy and mepron. unfortunately, I have become sick the past two months with this mysteriou digestive problems (at first thought it was linked to doxy but GI doesn't know anymore b/c still going on even after being off so long). I have lost like 15 to 20 pounds in the last two months without trying (don't get me wrong usually I'd be thrilled but this isn't the way to do it!). I can't eat much, feel like it gets stuck, heartburn, etc. I have had endoscopes, gastric studies, got a tube stuck up nose yesterday (HORRIBLE!!) - so far they've only found a few little things like a moderate hernia, but nothing significant. Dr. P has taken me off all antibiotics b/c of my blood work being bad (kidneys and pancreas levels) and also the digestive issues. I am having other symptoms that don't feel like the Lyme and wondering if I am dealing with something else that might be auto immune now or something - my primary is sending me to a rheumatologist to consult, but since my ANA was negative a couple of months ago I doubt they will find anything.

I pray you are well. Blessings


Veteran Member

Date Joined Oct 2007
Total Posts : 1172
   Posted 3/5/2009 7:03 PM (GMT -6)   
Hey did you test posative for co-infections? Or were you just assuming you had babesia because of symptoms?

Martha's Vineyard
Veteran Member

Date Joined Jul 2008
Total Posts : 1119
   Posted 3/5/2009 9:16 PM (GMT -6)   
hair loss...oh yeah.
I was in the shower in June of last year. My hair was so thin that you could see my skin all over. So I had it dyed darker...cause I am really light blond. And then I cut it shorter.
Then in the shower my little one picked up this wad in the shower..and she said yuke what is this..and I was like..hmmm
whatever...bad maid I guess. Then two days later the same thing again..and then again......and again..
I ran to my hair stylist and my hair looked terrible. I had jsut finished the German Dr.s three months of heavy abx. And then relapsed the next week after going off of them. But was worse off and going bald!
So I had my hair cute super short. And then luckily for me....people thought I looked like the old Bridget
But everyone at the spa said that all of their clients that are on some type of heavy drug use of some kind loose hair.
I had never had that problem before and I got lyme along time ago.
Get off of the stuff you are taking. Your body is trying very hard to tell you that it is not pleased with what you are doing to it. Not eating and looking and feeling like you are dying is not progress.
Ask your Dr. if he can detox your body with chelation?
Our bodies tell us when something is wrong. Listen to it.
Get better. Be nicer to your body.
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."

Regular Member

Date Joined Sep 2006
Total Posts : 364
   Posted 3/6/2009 9:07 AM (GMT -6)   
I didn't test positive for any co - infections through igenex a couple years ago. I am currently off all antibiotics due to doc's orders b/c of all the side effects he thinks are from them. I am not so sure that they are from the antibiotics are something else going on with my body. I also have:
dry skin, cracked lips, dry mouth, dry nose (bloody), vaginal dryness (sorry guys!), dry eyes, on top of the bad kidney and pancreas readings and some effects that could be Lyme or some other things like I am currently dealing with digestion issues (can only eat a little bit of certain foods without becoming nauseated, heartburn, food stuck - some days are better than others) all they have found with all the tests is a moderate hernia, the numbness and tingling in limbs, and fatigue. The reason it doesn't feel like my Lyme is b/c ALWAYS when I get my Lyme it is first neuro with the dizzy and brain fog and (knock of virtual wood and AMEN) that is not what I am experiencing right now. This just feels "different".

I don't go to the rheumatologist for a couple of weeks, so we shall see. I am sure it will be another dead end, but it's worth a shot. I pray you all are doing well.


Regular Member

Date Joined Sep 2006
Total Posts : 364
   Posted 3/6/2009 2:00 PM (GMT -6)   
Since I tested neg for all co infections a couple of years ago through Igenex can I still have them? The current doc I go to really doesn't do much about coinfections (but he's on my insurance and closer...blah blah blah). Just wondered if the tests can be wrong?!?!

Thanks - blessings,

Veteran Member

Date Joined Jul 2007
Total Posts : 943
   Posted 3/6/2009 2:34 PM (GMT -6)   
Yes tests can be wrong many of us here can attest to that. A good LLMD will treat by symptoms not tests.

Last year at this time I had lost almost all of my hair now my head is full again. Last year at this time I was just finishing 3 months of IV. and recovering from a huge inflammatory reaction to some meds.

I have been on antibiotics in some form for 2 years now and the hair loss came only after I stopped and got worse, then I took plaquanil and got a stevens johnson reaction. It was pure hell but I have climbed slowly out of it and have huge improvements since then. If you need mepron and can't afford it perhaps you could afford malerone which is not as strong but better than nothing. I have treated babesia for 2 years now also nwhich I did actually test positive for. Now going after bart for the past 4 months which I did notbtest positive for but know I have it.

Ignoring this won't make it go away it will grow and get worse if it is lyme and it's buddies. You need to bite the bullet and go out of network and pay for a LLMD or you will be as sorry as I was to have wasted so much time. I would have remortaged my house to get better. It has cost thousands of out of pocket dollars and will continue to I am sure. blessings
DX. LYME  7 /03 -I believe I 've had it since 1985- 
oral doxi, amoxi 6 months. Have been bitten 2x since                  
Developed many chemical & food sensitivities& Allergies to many Suppliments
Swollen Burning tongue/lips
Hashimotos Thyroiditis
DX. Babsiosis 4/07 -Malerone 2 wks, Mepron & Azithromax 6 mos. 
Armour Thyroid
Probiotics are a MUST   
Almost died from 3 doses of Plaquanil 12/07
IV Rocephin began 12/4/07
Bactrim began 1/22/07
Stopped Rocephin 3/04/08
DX Micoplasma
Mepron, Azithrommax, Rafampin 5/29/08
Stopped Rifampin began Bactrim and zithro 6/2/08
stopped Mepron 7 22/08
switched from bactrim to levaquin and had bad reaction to levaquin
began Mepron again till Nov, then began Malerone
began Rifampin and Minocycline
Outstare The Darkness--The Light Will Come!

Veteran Member

Date Joined Aug 2007
Total Posts : 887
   Posted 3/6/2009 6:14 PM (GMT -6)   
I;ve lost about 50% of my hair.  I was blaming it on hormones (going thru menopause) but I think some of it might be the LD.
2001 symptoms started:
Tingling in fingers and toes both sides, not tested at that time for LD
2007 Summer tested pos. WB, diagnosed with LD, tested neg for co-infections thru Igenex
Abx - Doxy 100mg 2x/day for 3 weeks (before diagnosis)
Amoxicillin 1gm 2x/day for 1 month
Amoxicillin 1gm 3x/day with Probenecid 500mg 2x/day  5 months 
Currently on Dr. Zhang's protocol 

Veteran Member

Date Joined Jan 2009
Total Posts : 914
   Posted 3/6/2009 7:50 PM (GMT -6)   
I've also lost about 50% of my hair and am hoping at least some of it will grow back now that I've started treatment. Just one of many symptoms the doctors could not find a reason for.

Like we don't have enough to deal with. lol
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