This is my first post, and I wanted to thank this incredible community on here for the wealth of information that I have learned in the last 6 months pertaining to lyme disease. I am CDC positive, diagnosed 6 months ago (estimated to have lyme 5-10 years)..thought I had lupus, and a smart doctor tested me for lyme without my knowledge of the disease. I think I am on the road to recovery..I have a great LLMD and with my current regimen, my fatigue is slowly starting to lift..along with some relief of other symptoms. I think I still have a long road ahead.
My question here is in vanity.. I am suffering extreme hair loss..it's been this way for the past 3 months..I really am having nightmares that I will wake up bald one day. I estimate that I have lost about 60% of the thickness of my hair..this is causing me some MAJOR emotional distress. My LLMD has not responding with any real answers for this, except for that we need to continue treatment to get at the underlying lyme & company infections. I'm worried that it's not going to grow back..I am obsessed with inspecting my scalp in the mirror, and seeing the thinness. My hair is a security blanket for me. I just want some sort of reassureness that it will grow back..otherwise I want to take drastic measures now to ensure I don't lose anymore.
Anyone with advice on this here? Has anyone known a female to completely lose her hair with lyme? Will it reverse and grow back? My scalp and hair is also very oily within 18 hours of a shower..I need help for this.
I should also add, that I am taking thyroid replacement, DHEA & testosterone are low, also supplementing with Vitamin D, B-12, bolueke, transfer factor, probiotics. My current antibiotic regimen (pulse doses) is minocycline, mycobutin, artemesinin, tindamax.
Thank you again for all your help.
Posts: 11 | From DC | Registered: Sep 2010
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17hens
Frequent Contributor (1K+ posts)
Member # 23747
posted
Sorry I can't help with the hair thinning although it's happening to me too.
So I look forward to reading all the help you'll get to resolve the problem!
I had very oily skin and scalp before starting treatment and now again whenever I'm herxing. I just have to shower more frequently.
It does get better for me with treatment, so something to look forward to!
Well, gotta SLIP into something comfortable and SLIDE into bed!
Hope you get your questions answered and so glad you found a good LLMD!
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
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I normally have VERY thick long dark brown hair. I never had any problems with my hair being thin. In fact, I always complained that it was too thick! It was so heavy and thick, that it got me to complain. Honestly, I regret all that non sense complaining. I would kill to have my thick hair back. I been having symptoms with in the past two years. I been losing so much of my hair, that's it is really thin now. And now, I think it's from lyme disease. Usually when I put my fingers through my hair, a bunch of my hair comes out. That never happened before I got sick, not to this extent. Right now, I try to take care of my hair as much as possible. Putting coconut oil in it every weekend. I massage my scalp with coconut oil and sometimes olive oil and leave it on my hair for hours and then wash it off.
Posts: 56 | From California | Registered: Aug 2010
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posted
My hair loss has been associated with hypothyroidism. And getting the right meds has been difficult. So, even though you are on thyroid meds, they may not be optimal.
What are you taking?
The thing is that these meds are notoriously variable in dose. So, even tho you stay on the same med, the dosing might not be optimal. Then too, some people do better on dessicated gland, rather than synthetics, or on time released T3. Also, they changed the formulation of armour recently and it no longer works well for some people.
In short, finding the right med for you might be the way you stop the hair loss. But a lot of doctors don't do this well. And mainstream endocrinologists don't even understand how to read test results.
So, like Lyme, you need an alternative approach to thyroid. Maybe your lyme doc is willing to do this, or maybe you need to have someone focus strictly on this. There is a link to lyme, though, because it attacks the thyroid gland. Some think this happens because lyme prefers lower body temperatures, and if your thyroid gland isn't working, you may feel cold.
Posts: 8430 | From Not available | Registered: Oct 2000
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Be sure your Vitamin D is D3.
I lost a lot of hair for a while, twice. But it got better.
A LL ND (naturopathic doctor) would be best to consult for this as there are many nutritional deficiencies that can be involved as well as endocrine problems common with lyme (some of which you already have identified but ONLY a LL doctor should be adjusting your hormones - most regular endocrinologists are not Lyme Literate. Lyme changes everything).
There are some herbal formulas that will help. Sure did for me.
In addition to your LLMD, I would consult a LL ND or someone like this LL herbalist:
Lyme Disease and Co-infections: Clinical Overview - by Rebecca Snow, MS, RH, (AHG), CNS, LDN -
Posts: 48021 | From Tree House | Registered: Jul 2007
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
i, too, have always had extremely thick beautiful dark brown hair and it was oiley also. i had to shampoo every other day.
the last months or so it has been falling out by the handfull and i mean handfull!!
it is now just barely thick and i can see my scalp in some areas.
i just cry when i look in the mirror.
i bought some hair, skin and nails vitamins at walmart which have biotin and other stuff. they're not expensive, about 7 bucks a bottle and you have to take three a day. they seem to be helping a little.
i use dove shampoo every 3-4 days now.
that's the worst thing for me, the hair loss.
oh sure for men, it's acceptable, but for women, it's totally devastating..
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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posted
Thank you all for your support and recommendations.
I am taking D3 daily. As for my thyroid, I'm not sure how hypothyroid I was, the level that started my supplementation was a TSH of about 4.5-5 about 3 months ago (so not high enough to cause hair loss). Recently, I was started on T3 (cytomel) since my reverse T3 levels were elevated, but 2 months prior they were not. I've been on synthoid and cytomel for the past 3 weeks and there has been no change in hair loss. I have always had low body temperature and always felt cold, but recently this has improved.
Lou, what are some of the other thyroid tests that need to be done to properly assess? My TSH level did decrease with synthroid, so it's supposedly working. I guess I'll know if the cytomel is working to decrease the reverse T3 for my next blood draw.
I guess I'm just looking for some comfort to know that I won't go completely bald, and that my hair will grow back..I need a way to stop the emotional distress from this, because I am trying to avoid all stress in order to get better.
Thanks Keebler, I will check out that herbalist!
Also, as for other remedies I've read on this forum: Nioxin hair products- tried this, no change Biotin supplements- have not tried this. skeptical because hair strength is not the problem, it's falling out at the root
I've done some other research and uncovered this statement:
"Another stress hormone involved in hair loss is corticotrophin-releasing hormone (CRH). When stress is perceived, CRH signals the sebaceous glands to produce excessive oil. This oil called sebum creates a waxy substance on the scalp, making it difficult for new growing hairs to permeate. Excess sebum can create weak, thin, slow growing hair and hair loss."
Does anyone know anything about CRH and lyme disease?
Posts: 11 | From DC | Registered: Sep 2010
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springshowers
Frequent Contributor (1K+ posts)
Member # 19863
posted
be careful to accept normal labs for thyroid. They are known to be off and not show the real picture.
Find a good doctor who knows that and will treat you.
The thyroid treatment stopped my hair from falling out in lumps and clumps daily.
its a horrible feeling to have it fall out every day in such large amounts.
The treatment literally stopped that.
I still have changes in the hair texture and such and there are changes I think are from lyme and damage from chronic lyme.
But get that thyroid checked and double check. May need HD MD who will help when blood tests are not accurate
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
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posted
Thanks springshowers! So I have some more investigating to do with my thyroid then..
What is an HD MD? (is that an herbalist?) Also, what other tests are done for thyroid besides blood tests?
Mine is falling out in clumps too, all day long, and especially in the shower..it's gotten to the point where I am almost in tears when I am washing my hair everyday. It's such huge emotional distress for me..
Posts: 11 | From DC | Registered: Sep 2010
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
I've read about this as a symptom of parasites. I know, it's hard to think about. Honestly, one more major pathogen to treat?!
But they are incredibly common in Lyme and can be obstacles to remission. And they can live anywhere in the body. Skin, hair follicles, lymphatic system...all would involve the scalp. Filarial worms would be the likely culprit, but there are others.
Please search for parasite threads and take this possibility seriously.
cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
My hair thinned terribly while I was in babs treatment. It re-grew. Thankfully!
Each time I treated babs the same thing happened (I had to retreat several times, for 6+ mos each time).
Generally, I attributed it to Mepron, but it may be babs treatment in general that caused it, along with the oiliness.
I second everything above on investigating the thyroid issue further as well - that also was an issue for me, but I would say that babs treatment was more the culprit.
Also - have you checked your adrenals? Addressing my adrenal issue helped with the hair issue as well.
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
Here's a thread with lots of info on scalps and parasites:
posted
My DHEA is low and testosterone is low..I know DHEA is a measure of adrenals? I'm sure I have adrenal fatigue, I have a lot of the symptoms. I haven't started supplementing with DHEA or testosterone yet, but considering it. Of course, testosterone may increase hair loss, so that is something I am worried about taking.
My LLMD is treating me for lyme, bart and babs..so hopefully his comments about treating the underlying infections would stop the hair loss eventually..I just don't know if I will have any hair left on my head to fall out in the coming months..it certainly doesn't grow as fast as it is falling out.
Thanks Boxermom, I am taking tindamax for the first time this week, and just heard about the parasite connection..it's amazing all these other things we need to worry about. My scalp doesn't itch, or have lesions though, like that thread suggests..but who knows maybe that is coming next for me.
Posts: 11 | From DC | Registered: Sep 2010
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posted
I'm also losing my hair and have even developed bald spots in the past two months. However, I was told this was a side effect of the plaquenil?? Based on everything I've read I will have to bring it up again with my MD Thanks
Posts: 157 | From Colorado | Registered: Aug 2010
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Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
concertchickfive, I had hair loss from hypothyroidism. I agree with Lou. Too many doctors treat solely by the TSH results. It can be hard to find a good doctor to treat thyroid disorders.
Other tests that are important are the Free T3, Free T4 (not just the T3 and T4) and thyroid antibody tests. If antibodies are present, it can indicate Hashimoto's Thyroiditis which is an autoimmune thyroid disorder.
Some people do better on synthetics such as Synthroid which is a T4 only med and others do better on naturals such as Armour which is a T3 and T4 med. It took years for me to find a decent thyroid doctor and getting the proper treatment has helped a lot.
I found my doctor by calling a local compounding pharmacy and asking the pharmacist if he could recommend a doctor who did not treat solely by the TSH result (doctors who use compounding pharmacies are often more open). He gave me the name of a GP. He has helped me more in a couple of years than all the others combined did in ten years.
Lyme disease can affect hormone levels. It is good you have had those checked. Have you also had your adrenal function tested?
Posts: 4681 | Registered: Oct 2000
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Leelee
Frequent Contributor (1K+ posts)
Member # 19112
posted
My hair was long, thick, and blonde. A few years ago it started thinning -- severely thinning.
Eventually I was diagnosed with Lyme, but by this time I had lost so much hair that I had to get it all cut off in a super short way. That took me about a year or so to get used to and added to my emotional trauma.
Even still, with the short hair, I kept losing more, especially on the sides in front of the ear area. I had bald patches that I would "artfully" try to conceal with hair gels.
This past spring when I went on IV Rocephin it started growing back some. Even my hair dresser noticed. Although I don't know if this helped at all, but I also started taking Biotin capsules and using Phyto shampoo for thinning hair.
I suspect the Rocephin has been the most helpful, though.
In my case my LLMD and I both blame the Lyme for my hair loss. My thyroid is thankfully in perfect working order.
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
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posted
i started losing hair while taking ceftriaxone. it's thinning but i'm not bald yet.
-------------------- Dxd ALS 3/2010 Dxd cllinical Lyme 4/2010 Positive for Protomyxzoa but absolutely nothing else in Igenex Posts: 417 | From central ct | Registered: Apr 2010
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
I always had really thick hair. A number of months ago, I started losing a tremendous amount of hair. I was on a small dose of a med that can cause that side-effect. I went off the med, and it helped some, but not enough.
It turned out that I needed a higher dose of thyroid meds. That has helped, but it is going to take quite a while to grow it back. ANd I'm still losing more hair than I used to.
This is quite a shock. As if all the other insults that we have to bear aren't enough?! The thyroid issue is huge here, as is the Lyme, of course.
Posts: 3771 | From around | Registered: Mar 2008
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posted
i too use to have thick hair. for many years i was able to cover it with styling but not any more. its devastating.
i also have thyroid disease, hair loss is how i was pointed to it. i have hashimotos and have been on sythroid for 4 years.
i have months that are worse then others... allo my hormones are off to some degree, very common for us folks
i would be mindfull on how much DHEA or Testostorne i took... that can make your hair fall out if its too high.
i have not found anything that has helped. i had hoped that treating the thyroid would fix it but it hasn't helped.
also be careful of hair supplements, sometimes they have high amounts of kelp which means iodine which can throw your thyroid off futher.
Posts: 161 | From sonoma county | Registered: May 2009
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posted
Well, it's getting to the point where I'm dreading washing my hair, I cannot believe how much comes out..clumps and clumps! UGH!
I guess the consensus of the responses is towards thyroid, which I am in the process of optimizing the treatment. I'm not sure when my doctor will decide to switch me over to another type of thyroid product besides synthroid and cytomel. I have had my TSH, Free T3, Free T4, and Reverse T3 tested. What other tests are needed?
My adrenals are also an issue here..my DHEA levels were low, and my testosterone levels were low. I just reluctantly started on a specially compounded cream of DHEA/testosterone..but I am skeptical. Will this really help? Also, what are the other lab tests for adrenals?
I guess a negative attitude is the wrong thing to have here..I believe in the power of positivity, but this disease is kicking my arse!
Posts: 11 | From DC | Registered: Sep 2010
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posted
Ok, all of my lab tests for thyroid were within range..TSH, Free T3, Free T4, and even reverse T3! What is going on here?? What could this be? UGHHHHH! Something is making my hair fall out in clumps and I am just so frustrated that no one can figure out why and make it stop. I do not think it is thyroid related..guess it's just the lyme & co, I HATE this disease. Sorry for my late night venting..
Posts: 11 | From DC | Registered: Sep 2010
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
concert,
there is a post in the archives for ointments for the scalp. Type skin parasites into search bar at the top and it will come up. Also do a search on here for antiparasitic herbs.
Parasites and worms can be a co-infection of Lyme.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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posted
For years, my hair broke easily and fell out profusely. Any time I ran my fingers through it, I'd be left with disconnected hairs wound around them. My hairbrushes were always filling up, my hair clogged the vacuum cleaner and the drains, it fell off on my clothes. It looked terrible.
Two years ago I started taking biotin, a vitamin, at the suggestion of my hairdresser. It's made a huge difference for me. Now my hair is thick, shiny, and healthy. It really is amazing how much more hair I have; it hasn't been this thick since I was a child.
I found out I had Lyme and co-bugs a year ago, and have been on abx since then, but by the time I started abx I'd already been taking biotin for a year and my hair was already improved, so I really think it's the biotin, not the abx that made the difference.
Posts: 212 | From San Francisco Bay Area, California | Registered: Aug 2010
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nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
Just my 2 cents from someone who doesn't have thyroid problems but also had thinning hair. At my worst before starting treatment, it was getting very thin on top, and above my ears. Maybe other places too, but I couldn't see.
It still isn't thick, never has been, but it has stopped falling out, and has been growing very long since I have been taking antibiotics for 2 years.
My hair is now down to my hips, which is a foot longer than it used to be able to grow.
I am actually experiencing a weird thing where some of my hair is thicker - like very dark and thick, compared to my other hairs. So it might be that my hair will eventually be very thick once I am in remission.
Just some words of hope that Lyme treatment might help some with this problem even if they don't have thyroid issues. (Not to mention Lyme treatment has been found to resolve thyroid issues in itself).
It's also possible that removing several foods that were causing trouble for me might have helped too. I also stopped using any synthetic body and haircare products, and started using gluten-free shampoos, etc..
In the meantime, ,you might try using a henna (make sure it is pure henna, try to find organic, certified 100% henna brands) - it is a great hair conditioner, very good for hair health.
You can get the type that doesn't color your hair, just conditions it. It works amazingly well.
springshowers
Frequent Contributor (1K+ posts)
Member # 19863
posted
HI Again HD MD is a Homeopathic Doctor. They can do testing using devices that will give a much better picture and I found much more accurate than blood tests.
Do not accept those blood tests .. Honest. All the women In my family have this issue and all feel much better and stopped losing hair and stopped progression of horrible skin and other thyroid symptoms.
I know the feeling of having clumps of hair coming out. Oh about six months back I ran out of thyroid meds. Oh I said.. who cares. Right? I will last a few weeks off.
Oh My.. I had the hair falling out in a week or two so badly I was crying too..
I went to the doc and apologized for letting my script lapse and in two weeks my hair was back steady on my head.
No more hair strainers on the tub and shower drain to clean and cry about daily.. and worrying.
Again. Double check those tests and get second opinion and yes from a Homeopathic MD if need be...
Or from a DO or such that knows and realizes that the blood tests are not sensitive enough to diagnose the real picture.
!!
I was lucky to get my doctors partner in the office who was very much into hormone testing and food allergy testing and such and got the full work up and she took into consideration the blood tests being off and compensated for it and took my symptoms as a verifying diagnosis..
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
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posted
I am having the same problem. I am getting really worried...it is stressing me out. I believe mine started before I started IV meds 3 weeks ago, so now I'm attributing it to neurontin. I have googled "neurontin and hair loss" and it seems this is a common side effect.
How much biotin should one take??
Posts: 618 | From NC | Registered: Oct 2009
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Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
concertchickfive, can you post your Free T3, Free T4, and TSH results?
Even if your results are in range, there is usually a lot of room to work with. I feel my best when the Free Ts are in the upper one-third of the lab range. When my results are in the lower one-third of the lab range, I have thyroid symptoms.
I recently starting having more symptoms. When I checked my thyroid labs from June, the Free Ts were barely in range. My doctor increased my thyroid med, and it is helping.
Posts: 4681 | Registered: Oct 2000
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posted
I agree with Sammi. You want to be in the higher end of range on blood testing for free T4 and T3. Many docs do not know this.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
Here are my labs: Reverse T3 248 pg/mL (90-350) Triiodothyronine, Free,Serum 3.5 pg/mL (2.0-4.4) TSH 2.510 uIU/mL(0.450-4.500)Thyroxine (T4) Free, 1.00 ng/dL (0.82-1.77)
Maybe it is the mycobutin..this all seemed to start when I started taking it, but I also took about a 1 month break from it due to a major herx and my hair loss was still increasing despite being off of it.
To be honest, I also feel that my hair started falling out when I started the thyroid medication. Who knows what is the culprit..that is when I saw the latest LLMD and he made a bunch of changes to my regimen. I also stopped taking birth control at that time too.
I am so confused and hate that I cannot control the sequelaue of this disease..
Thank you for your responses again.
Posts: 11 | From DC | Registered: Sep 2010
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posted
Gael, thank you for your response as well. I just started pulsing tindamax this week for parasites, but I will look into the topicals/herbs as well..
Where do I find a LL HD? Does ILADS provide a list? I really like and trust my LLMD, and don't necessarily want to see someone else.
Posts: 11 | From DC | Registered: Sep 2010
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springshowers
Frequent Contributor (1K+ posts)
Member # 19863
posted
You can always see another doctor just for the thyroid issue and get them to treat that part for you.
My LLMD does not do it all or always the way I want etc..
So sometimes we end up with a team of doctors that works best.
That is what I have found anyway..
Maybe others are lucky to have one doctor who treats and does it all for every spectrum of their needs..
No me
Also you can see an ENDO that is a specialists but again I would make sure you find one who is open and knowledgale and is not just that same old conventional doctors who go by the book only and are not open to treating based on symptoms and not just the testing..
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
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posted
Sounds like your free T3 and 4 are in the upper end alright. Not sure about the significance of that RT3 though and wondering if you have thyroid autoantibodies.
But there are other possibilities, as others have mentioned.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
I had hair loss prior to Lyme treatment. I probably lost a quarter to a third of my hair. What didn't fall out broke off. I seldom brushed it and only washed it once or twice per week because it would break off more whenever I did.
With treatment it started growing back. Now it's completely back to normal and last spring I had the last of the bad ends cut off.
I do take one grain of Armour. My TSH was over 3 and my LLMD said many feel better with it under 1, so he prescribed medication. I took sythroid and cytomel when I was sick, and switched over to Armour when I got well.
I don't know if it was Lyme or thyroid that caused the hair loss, but it was bad. I always had great hair and it was difficult having hair that looked so bad.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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lululymemom
Frequent Contributor (1K+ posts)
Member # 26405
posted
Blood pressure meds such as atenolol can cause thinning hair as well. It's sometimes linked to the meds we take. I have started using Silica gel and that is making a difference for me..
Bartonella henselae 1:100 Posts: 2027 | From British Columbia | Registered: Jun 2010
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
When I first started taking Ceftin, my hair also fell out in clumps. I was a redhead, and in a short period of time, I realized all the color had drained from it.
People who saw me described me as a blonde, which was disconcerting. My drains all clogged with hair, and in the shower, it seemed to come out in handfulls. In addition changing color, it got a strange texture.
I did have my thyroid checked. I was right on the edge, and the doctor decided it wasn't worth it to treat it.
Within the past year or so, as I've been recovering, my hair is growing back...and the cool thing is that it's red again--a really wonderful thing. I just figured it was a symptom of Lyme, and I hoped it would improve.
In my case, that's happened, but when I read the above posts, I realized I also take biotin regularly...so maybe that helped!
Maybe this will offer just a little hope
Andie
Posts: 2549 | From never never land | Registered: May 2005
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