Hi everybody. I'm a newbie. I've been reading since yesterday trying to find out if there's been discussion about anyone else losing there hair from Lyme. I'm just so relieved to find a place where people are talking about Lyme. And I know losing my hair probably shouldn't be at the top of my list of worries but I'm kind of freaking out. I'm 37 years old, a stay-at-home mom of 3 kids who used to have long brown hair. I just got bit in July of this year. I've lost close to half my hair. I live in Connecticut and don't know how Lyme literate the rheumatologist my GM sent me to is.
I've been on 200 mg Doxycycline since mid August but still have muscle & joint pain, headaches, confusion, stomach pain, eye strain and urinary tract pain. The doctor wants me to stop taking the Doxy in one week and "see how I do." But after reading all your entries that sounds like a bad idea.
Anyway, has anyone else experienced hair loss at onset of Lyme? Was it total and did it grow back?
Thank you for taking the time to read my story and thank you so muchfor having the courage to share yours. Prairiejane
Posted by sixgoofykids (Member # 11141) on :
I did lose a lot of hair, and what I didn't lose was prone to breaking.
It is growing back with treatment. The new growth is so much healthier that I just had about three inches cut off. About two or three more inches and I'll be rid of the unhealthy stuff. I had forgotten how thick my hair really is!
I would find an LLMD, and in the meantime, tell your doctor that you really want to stay on the meds for a few weeks longer, then try to get off them ... I wouldn't bother telling him all about what you've learned here, just that you want to be sure you got it all, can you just try a few more weeks?
I can tell you based on his wanting you to get off the meds while you're still symptomatic, he's NOT lyme literate!
Posted by prairiejane (Member # 13315) on :
Thank you so much for replying! When you say your hair grew back "with treatment"... do you mean with treatment of your Lyme or with some kind of treatment for your hair? I feel kind of silly for being so upset about losing my hair but it's really bothering me.
Posted by Jellybelly (Member # 7142) on :
Hi, yes I lost my hair when I was at my sickest. I had always an overwheling mass of hair and often it was likened to Farah Faucet hair when I was younger. In about my mid 30s mine started falling out....not breaking, but coming out by the root.
It got bad enough that you could see my scalp and started looking thin and straggly so I cut it shorter.
Fast forward, I am almost 51 now and while it isn't all back, I have a pretty thick head of hair again.
Once I started getting well, it stopped falling out. A couple of things that made a difference even before I was really feeling good was getting some decent, deep sleep. It was found that I didn't deep sleep at all and did not dream. I knew I didn't dream already. I only actually bounced in and out of twighlight sleep and being totally awake. So fixing that really helped and taking Elavil did the trick for me.
Then the other thing that really helped was getting some blood to my head. I was found to have pretty severe hypercoagulation or thick and sticky blood due to chronic infection. I was put on heparin to clean up and thin my blood. Doing this changed many things for the positive over time.My ice cold extremeties warmed right up, I turned pink instead of blue and my skin took on a hydrated look just to name a few things.
Having my hair fall out, was what really pushed me over the edge to looking like I was dieing and probably was. Now I look healthy once again.
Posted by prairiejane (Member # 13315) on :
I feel like losing my hair is the last straw. Part of me knows it's dumb. So many of my other symptoms are keeping me from functioning fully but this one is upsetting me the most.
My hair loss has been very sudden.
I'm so glad for you that yours grew back.
Posted by sixgoofykids (Member # 11141) on :
With Lyme treatment.
I had both loss at the roots and breakage.
Posted by dmc (Member # 5102) on :
certain abxs caused my hair to fall out. I find it's omnicef that caused mine...been off couple weeks and the "shedding" has stopped.
my llmd says he's heard of it from other patients w/lyme, not so much from any abx. It is as uf I had chemo...no bald spots but enough to clogged the drain while showering.
Posted by 5dana8 (Member # 7935) on :
I have been off all abx for a year & 1/2 now. My hair still fall's out. It tends to run in cycles.
So for me it's definietly lyme or co-infection related. But when It goes away my hair does grow back. Nice & full till another cycle comes along.
Posted by prairiejane (Member # 13315) on :
Same with mine. No bald spots. Just diffuse shedding all over. I have a stupid question. What is abx? Also do you mind my asking at what point in your Lyme are you? How long have you had Lyme? I've only had it since July.
Posted by sixgoofykids (Member # 11141) on :
Abx is shorthand for antibiotics.
I have had Lyme for 35 years, but it's only been the in past 4 years that I've been pretty disabled from it. I have had three other flare-ups that were bad enough that I couldn't work, but they resolved themselves after a few months. No doctor could ever find anything wrong with me.
I did not have hair loss until a few years ago. It was accompanied by weight loss. Like you, no bald spots, just thinning. I had thick hair to begin with, so mine wasn't really noticeable to others. I saw a picture of myself from a few years ago, and I must say, it was shocking to see how much thinner my hair was then.
Posted by TerryK (Member # 8552) on :
Welcome to lymenet!
My hair started to get really thin after starting treatment. It used to be thick. A question about hair loss is included on my LLMD's office form that I must fill out at every visit so I assume it is not unusual. There have been other discussions here about it. Do a search to find them.
It seems clear that your doctor is not lyme literate. You are on a low dose of doxy for lyme disease. I'm not a doctor but from what I've read, that is not enough to get rid of the infection. Plus as sixgoofykids said, you need to be on it much longer, until symptoms are gone for 2-3 months.
There are several forms of borrelia that need to be addressed and you are on meds that address only the spirochete. The cyst form can live in your tissues in a dormant state and when your immune system is down, it can re-activate months or years later and make you sick. Very hard to track down what might be causing your illness at that point.
You need an LLMD ASAP. Your bite/infection is fairly recent so you have a pretty good chance of keeping yourself from being chronically ill if you deal with this immediately! No time to waste because your health is truly at stake. Go to the seeking doctors section and ask for an LLMD in your area. You need to be tested and/or treated for co-infections also. Many ticks pass much more than just borrelia and this greatly complicates treatment and makes it so that you can't get rid of lyme. If you have a co-infection, you will remain ill until it is treated. Most need to be treated before or during lyme treatment.
Lyme disease is a very complex and political disease. Lots of people come here after years of suffering because they didn't get appropriate treatment to begin with.
Go to the newbies section at the top of the forum and read, read, read so that you can learn how to get well.
Edited to add: other medical conditions can cause hair loss such as diabetes and thyroid problems so be sure and discuss your hair loss with your doctor and get him to test you for these other conditions and any others that might fit your situation.
Not everything is lyme disease but it sure seems like lyme disease can cause just about anything. Last night my husband (who does not have lyme) said NOTHING seems to be off the table when it comes to lyme disease.
Best of luck to you, Terry
Posted by prairiejane (Member # 13315) on :
Thank you everyone so much for the information. Prairiejane aka Soon to be Baldie
Posted by 5dana8 (Member # 7935) on :
Hi prairiejane
Sorry I didn't give you a proper welcome,.. WELCOME to Lymenet
And I am so sorry to hear you are having such a rough time lately.
I really really think you should try to find a Lyme literate doctor as soon as possible~ Lyme disease & it's co-infections are tricky to treat. If you stop when you still have symptoms you will become chronic.
I am not a doctor but 200 mg doxy is not enough to treat lyme. Please read dr. B's guidelines~
The treatment section starts on page 11. He is the nation's leading expert on LD.
You also might need to be treated for co-infections~ diseases the tick pass's along with lyme disease.
Hope you can find the help you need & feel better soon
healing hugs Dana
none of the above is medical advise...just my 2 cents
Posted by Geneal (Member # 10375) on :
I started losing my hair about 3 months into treatment.
I cried as I pulled hand fulls out.
Not that I am vain or anything but that was kind of the icing on top of the cake.
My LLMD put me on 15mg of armour thyroid as I was having other issues consistent with
Hypothyroidism, Guess what? My hair stopped falling out.
Diflucan can also cause hair loss.
I would ask that you please, please find a Lyme Literate Medical Doctor (LLMD)
To continue your treatment. I was dx by a duck and given 200mg of doxy a day too.
I herxed and herxed on it (45 days), but never showed any improvement.
Saw my LLMD. Put on 300mg of doxy (Weigh less than 115lbs) and within a couple of months saw a difference.
Additionally, a LLMD will know to look for co-infections that many of us with Lyme have.
Hugs,
Geneal
Posted by prairiejane (Member # 13315) on :
Thank you! I just posted on Looking for a Doctor to find a LLMD in Connecticut.
Hearing what everyone has to say has made me resolved to find a doctor who really knows what she's doing.
Posted by prairiejane (Member # 13315) on :
Geneal, My doctor did just test me for hypothyroidism. Haven't gotten the results back yet.
Did you have any side effects from the 15 mg of armour thryroid? Do you still take it? Or if you stopped, did your hair fall out again?
Just tell me if I'm being too nosy.
My husband keeps telling me not to worry...that if I go completely bald, he'll shave his head too.
Prairiejane
Posted by alliebridge (Member # 9103) on :
I hope your doc is savvy like mine. He says that thyroid tests are unreliable, like Lyme ones.
Mine came out in the "normal" range but since I had symptoms, hands full of hair falling out and days where my body temperature was in the 96-96.5 range, he diagnosed me clinically and put me on 15mg armour thyroid then increased it. I'm now on 45mg.
He said that the Lyme attacked my thyroid. Posted by Mtgirl (Member # 13278) on :
I've lost so much hair over the last few years, it's freightening. I should buy stock in Dran-o. The same woman has cut my hair since I was a child, and was freaked out by ho my hair thickness and texture had changed. She demanded I see a doctor about 3 years ago for this. Of course the doc said it as probably stress or seasonal changes. Silly ducks.
Posted by luvs2ride (Member # 8090) on :
20 mg DHEA made my life so much better. Dr upped me to 40mg daily and the male pattern baldness began.
Now I am on just 5 mg DHEA and doing fine again. All my hair grew back.
Luvs
Posted by valymemom (Member # 7076) on :
My 25 year old who has been treated with abx for going on 4 years..... and sick for 7 years started balding many years ago. Six months ago he only had hair on the sides.
His third llmd may have discovered a treatment that is finally working......and for him, it is treating bartonella with rifampin/doxy/zith.
Now his hair is growing back on top.
Besides treating the bart, though, in the last 8 months he also has done a parasite treatment and daily uses a cream for his adrenals/hormones (which has contributed to a better night's sleep and less fatigue when waking.)
Posted by Rianna (Member # 11038) on :
I had long thick hair then at my worst it started to fall out - after a year of treatment for Lyme and thyroid it has grown back and is thicker than ever - Just as well short bobs are in fashion here in the UK!!!!!!!!!
Posted by Pocono Lyme (Member # 5939) on :
Maybe you could try Biotin. Suggested to me when my hair was falling out in clumps. I'm going through another round of it now, so back to the Biotin.
Overview: Vitamin H, otherwise known as biotin, is essential to normal growth and development and overall health. Bacteria in the intestines produce enough biotin for the body so that most people would not need an additional supplement of vitamin H. However, additional great sources of vitamin H are found in egg yolks, fish, nuts, oatmeal, and beans. How This Vitamin Works in Your Body: Essential for release of food energy Reduces symptoms of zinc deficiency Functions in protein metabolism Helps in the formation of fatty acids Could relieve muscle pain and depression People who consume large amounts of raw eggs may benefit from this supplement
Where This Vitamin is Found: Almonds Bananas Brewers yeast Brown rice Bulgur wheat Butter Calf liver Cashew nuts Cheese Chicken Clams Eggs, cooked Green peas Lentils Liver Mackerel Meats Milk Mushrooms Oat bran Oatmeal Peanut Butter Peanuts Salmon Soybeans Split peas Tuna Walnuts
How to Use: Available as: Liquid: the best form due to its high bioavailability and fast absorption. Always choose liquid as your first choice when supplementing your diet. Tablets: available
Recommended Daily Intakes Men: 30 mcg Women: 30 mcg Pregnancy: 30 mcg Lactation: 35 mcg
Cautions: Consult your doctor if you have: No problems should occur.
Over 55: No problems should occur.
Pregnancy: No problems should occur. Keep within the DRI.
Breastfeeding: No problems should occur. Keep within the DRI.
Storage: Heat and/or moisture may alter the vitamin. Refrigeration is recommended.
Symptoms of Deficiency: Symptoms are incredibly rare. However, if such a deficiency occurs, symptoms may include hair loss, dermatitis, anemia, muscle pain, loss of appetite, lethargy, depression, hallucinations, and lowered immunity.
Overdose: Signs of Overdose: Amounts in excess of the manufacturer's suggested dosage is nontoxic.
Side Effects: No side effects should occur if taken within the daily recommended amount.
Interactions: Interacts with : Combined effect Long term antibiotics (broad spectrum) : May lead to significant biotin deficiency. Sulfonamides : May lead to significant biotin deficiency. Alcohol/Tobacco products : Absorption of biotin reduced.
Posted by mgcd (Member # 13191) on :
I posted a similar concern on September 13th. You may want to refer to those replies as well. There are a few suggestions about biotin and coconut oil. Also If you are looking for a good llmd in CT, I have a recommendation. You can send me a private message for more info.
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