Sorry for yet another post by me. I am just so confused.
I have doubts that I have lyme. My PCP treated me because my IgM and IgG were abnormal for band 41.
If it is not lyme, what else could it be??? Why would that band be abnormal???
Brief recap - only symptom is hair loss. My hair has been falling out for 2 months! Despite doxy, hair is still coming out. Thought treatment failure but wouldn't I have other symptoms by now if it was?
Have lots of energy, no joint pain, run every day... Thus, I think it is something other than lyme...
Any ideas why those would be positive if it is not lyme???
Also - I have read 2 things about band 41.
1) that it is only for spirochetes (i.e. syphilis, lyme)
or 2) that is is for any tail like bacteria
Which is true???
[ 12-29-2009, 11:30 PM: Message edited by: a1yssa ]
Posted by seekhelp (Member # 15067) on :
Why would any doc bother testing for Lyme with no symptoms? I'm lost.
Posted by a1yssa (Member # 23648) on :
Not sure.
It was my allergist. I went to her because I had 2 cases of oral thrush in August (very weird for me) and my hair started falling out like crazy in November (and has not stopped despite 21 days on doxy).
She thought it was because of mold (I am highly allergic and started working in this old building in July).
I didn't even know she included lyme in my blood work, but she called me and said that I had acute lyme.
I freaked out and went to CVS to pick up my doxy. 21 days of that and my hair is still falling out.
Going back tomorrow to ask what the heck is going on.
Any advice would be helpful!!! Would mold or some allergy cause band 41 to flare up.
I really don't want to go find and LLMD because my hair is falling out. I don't even think he would treat me.
Posted by karenl (Member # 17753) on :
I found online that there are other pathogens causing band 41 to show up:
for example the protozoan which they call the Fry mystery protozoan
EPM which also can be found in humans
enterobacter cloacae
I have not done intense research, just some ideas.
basically all with a tail can influence band 41.
Posted by kitty9309 (Member # 19945) on :
Low ferritin (storage iron) and hypothyroidism can cause hair loss.
I have both and I attribute most of it to hypothyroidism. My hair grows back when my TSH is less than 2.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by seekhelp: [QB] Why would any doc bother testing for Lyme with no symptoms? I'm lost.
?????? makes no sense to me either
You can also have hair loss from eating too little fat.
Posted by Siciliano (Member # 15920) on :
Kitty, I mentioned thyroid to Alyssa already in a PM. That is the only thing I can think of also.
Alyssa--did your Dr. order a complete thyroid panel? And what is his/her theory for your hair falling out?
Posted by a1yssa (Member # 23648) on :
I am going to go back tomorrow and ask her the list of questions I thought of these past 3 weeks.
Thyroid levels fine. I get blood work every year and the thyroid levels have stayed the same.
I really think it has to do with mold (which can cause hair loss and oral thrush!). She thought the oral thrush had to do with the mold and said that the hair loss had to do with the flu I had in November. (It really was the flu, not a lyme symptom. My school closed for 2 days because of it).
What I am scared of is what happens if it really is lyme and I just kind of blow it off after the 21 days of doxy. I am debating whether to ask her for another 21 days.
Many people said that they had hair loss with lyme but they also had a number of other symptoms present with it.
So confused. I just want to be properly diagnosed. I know I must sound shallow, being so concerned about my hair, (and my hair isn't even that nice) but it makes me sick every time I have to brush it and watch it just come out and out and out...
Posted by seekhelp (Member # 15067) on :
Yeah, I think a lot of us here just dream every day only to have hair loss problems. However, I understand your concerns about a correct diagnosis and fear of being wrong and paying consequences later. Hopefully your doc can be more clear.
Posted by a1yssa (Member # 23648) on :
quote:Originally posted by Lymetoo:
quote:Originally posted by seekhelp: [QB] Why would any doc bother testing for Lyme with no symptoms? I'm lost.
?????? makes no sense to me either
You can also have hair loss from eating too little fat.
Also, I went to a nutritionist when this started because this is the first thing I thought of. Ate peanut butter 3 times a day for 3 weeks! No help.
Thanks for the suggestion though.
Iron levels were fine. I was anemic before but and fine now.
Started taking biotin and some beta carotene because they are supposed to help with hair loss.
Have always taken a multivitamin.
I was a collegiate distance runner so I have always watched what I ate and made sure I was getting the best nutrition.
That is why this is so confusing and frustrating.
Posted by Pinelady (Member # 18524) on :
I would get copies of all reports/labs.
You may find more info than doc offered to tell
you. I would look to see what tests they ran and
who performed them. Good Luck.
Posted by Hoosiers51 (Member # 15759) on :
I would think about seeing an endocrinologist if I were you, in case it is something horomonal that is not becoming readily apparent in normal bloodwork.
Unless your regular doctor has any other ideas for causes of hair loss.
It is possible for healthy people to show positive on band 41, even IgM, from what I understand...regardless of what exactly is causing band 41.
If you are otherwise healthy (besides the hair loss), I would not worry about neglecting possible Lyme. Can't worry about everything...just my opinion. Unless your gut is telling you something different. But from the info you have given, it seems it is more likely something else than Lyme.
If you had fatigue, or aches, or comprehension problems, or psych symptoms, I would think otherwise.
Please don't take me too seriously...just a thought. Good luck.
Posted by Hoosiers51 (Member # 15759) on :
Also, I would look into the adrenals...not sure if adrenal issues can cause hair loss or not.
Since you were a distance runner...I'm wondering if you could have over-taxed the adrenals.
Posted by a1yssa (Member # 23648) on :
Thank you all. Off to the doctor's. I am demanding more tests.
I am so tired because I have not slept well in weeks because I have been so worried. Keep waking up with nightmares. Now I will probably be told... see you have fatigue... Oh brother....
I will let you know what, if anything, they find out. Should know more next week after more blood work comes in...
Here most people on this board are sick and there doctor's are not willing to accept 2 bands, where as I do not have the symptoms and my doctors are telling me I have lyme because of 2 bands (I did have band 58 (heat shock protein) on the IgG as well - not lyme specific either).
Thanks for all the ideas as to possible causes...
Posted by karenl (Member # 17753) on :
Mold causes hair loss. Normally it comes and goes, so it would be worse and then less, then worse..
Concerning mold you need to read the webpage of Richie Shoemaker and personalconsult.com. Mold is very serious.
In any case you should try to get good probiotics for your bowels because of the band 41.You can have a tail bug but not bothering you but showing up on band 41.
Also to check for other bacteria a bowel test kit could make sense, it also covers yeast.
Try biotin up to 10,000 for hair loss. It works for me.
Posted by kim812 (Member # 17644) on :
I only had band 41 and highly doubt I ever had Lyme.
My husband was tested even though he had no symptoms and he had only band 41 show up.
My sister also sick for years had only band 41 and she was diagnosed after three years with MS.
She has been in treatment for almost 3 years and is doing extremely well...
My LLMD in New York is the one that told me that only having a 41 band basically means nothing because that is all I had.
He treated me anyway and I had no success at all with abx.
Posted by a1yssa (Member # 23648) on :
Well I just got back form my allergist. She strongly believes I have Lyme because the lyme results showed that my IgM was high (1.0) which is equivical. She did not even wait until she saw the Western Blot because she said that high IgM on a Lyme test meant positive.
(Any thoughts?)
I felt bad because I kept questioning her and showed her all the stuff I printed out about Lyme specific bands.
I even showed her that according to the blood work, positive band 41 does not even mean positive unless you have other bands.
I called my PCP who agreed with me that she doubts I have lyme because of the lack of symptoms and that more than band 41 on the IgM is needed.
For those who had lyme related hair loss, did yours shed really bad - like over 300 hairs, then lessen for a few days, then shed majorly again?
Also, did any of you just have hair loss with no fatigue, joint pain, etc present?
All other blood work fine. Referred me to a dermatologist.
Don't get in there until February.
All I can say is I have had about all I can take of being worried about lyme.
Posted by METALLlC BLUE (Member # 6628) on :
Band 41 and 58 with an equivocal IgM? I'd strongly suspect Lyme too with prior anemia, oral thrush and sudden hair loss.
A lot of patients report the hair loss that you're noting, including the wax and waning (a lot, a little, none, then back to a lot).
I'd run an Igenex Western Blot, IgM and IgG. They specialize specifically in tick-born infections and they have the most effective Western Blot on the market. If their test shows you have Lyme, then you'll know.
Igenex.com is the website. You can contact them for information.
One final note. I've read material from other specialists in Lyme Disease who have noted that patients can present with only one or two symptoms and still have the infection. Some children for example may only have ADHD type symptoms, while another may only have acid reflux, or in your case, hair loss, oral thrush etc.
Posted by Hoosiers51 (Member # 15759) on :
When you mention the 1.0, that makes me think of the ELISA test for Lyme. That is what the results usually look like....1.0, etc. Did they run an ELISA too?
The ELISA should indicate current infection, not past.
If that is equivocal or positive, it could (see below) be Lyme.
Sometimes the ELISA supposedly can be a false positive, but I dunno....
If I were you, I would also get tested for syphilis if you have ever been sexually active.
Syphilis can make your hair fall out in patches. I knew someone with syphilis, and this is the only outward sign she showed. It got really bad too, her hair. Then she got treatment, so I think she is just fine now.
The more I think about it....even if you have only had one partner, I would get tested for it, because of the similarities with your case. Or if you have had a blood transfusion...anything like that.
Syphilis could cause band 41 to be positive, as well as the Lyme ELISA, since the two bacteria are so similar.
I didn't make the connection with the hair loss until you mentioned "equivocal 1.0" which is probably the Lyme ELISA you're speaking of, which with syphilis, can show positive. I had assumed before you'd had an ELISA and it was negative.
Hope that helps some.
Posted by a1yssa (Member # 23648) on :
Thanks. Syphilis is patchy loss. Mine is diffuse.
Some have suggested Telogen Effluvium - when your hair goes into the resting phase because of some stressful event and falls out suddenly 3 months later.
All my hairs have the white bulb at the end, which could mean TE or a million other things (did your hair have the white bulb at the end)?
All blood work is fine and I feel fine so I am not sure.
In regards to the anemia, I was anemic when I was running in college 3 years ago. The oral thrush was back in August. My doctor said that if I did have lyme, she doubts that my IgM levels would still be that high. She thinks it would be a more recent infection, like October (I was tested December 4th).
No idea but thanks for the feedback.
Posted by sutherngrl (Member # 16270) on :
My hair fell out due to stress years ago long before I had Lyme Disease. It fell out in hand fulls.
Can't remember if it waxed and waned or not, but remember that I lost tons of it. I remember I could just run my hands through it and have a hand full of hair.
Posted by Hoosiers51 (Member # 15759) on :
You should find out if you did or did not get the Lyme ELISA test....that test measures "levels."
If you had an equivocal on the Lyme ELISA, it is either Lyme, or could be another infection causing it to have a false positive, like mono, another virus, or syphilis.
Posted by Pinelady (Member # 18524) on :
If you don't want to see a LLMD, you could always
do a challenge of doxycyline and test with Igenex.
That is close to what I did (drank homemade CS
for 3 mths cos' doc said nothing was crippling
me, I was just depressed) and still did not
produce a lot of antibodies, but enough to convince me and my
LLMD. You take it for 3 weeks and off for at least
10 days and draw and ship to lab. It is your choice.
Posted by disturbedme (Member # 12346) on :
quote:All my hairs have the white bulb at the end, which could mean TE or a million other things (did your hair have the white bulb at the end)?
My hair falls out quite often as well and most of them (but not all) have the white bulbs at the end, but I always thought and assumed that the 'white bulb' at the end of the hair was the root coming out with the hair.
Posted by a1yssa (Member # 23648) on :
I just thought of something and I want your thoughts...
My gut is really telling me that I don't have lyme, but I am still trying to explain the presence of that band 41.
I was not diagnosed with gingivitis, however, my whole life my dentist has been telling me that my plaque build-up is horrible depite me brushing and flossing 3 times a day.
Any thoughts? See below:
Periodontal means "around the tooth".
Periodontal diseases are gum and bone infections caused by the bacteria (germs) in your mouth. These infections destroy the foundation, the gum and bone around your teeth, and are some of the most common infections in the United States.
In fact, more than 75% of American adults over the age of 50 have some form of periodontal disease.
Despite the number of people infected with periodontal diseases, many don't believe they have them. In a recent survey, 8 out of 10 American believed they don't have periodontal disease, ever though 7 out of 10 had one or more symptoms.
Posted by disturbedme (Member # 12346) on :
a1yssa - did you see what Hoosiers was saying?
quote:Well I just got back form my allergist. She strongly believes I have Lyme because the lyme results showed that my IgM was high (1.0) which is equivical. She did not even wait until she saw the Western Blot because she said that high IgM on a Lyme test meant positive.
This obviously means you had an ELISA test, and if it's equivical, you most likely have lyme. It *could* be something else, but it mostly shows equivical or positive due to LYME. And like Metallic Blue said, there are people with lyme who can present with just one or two symptoms. And hair loss, oral thrush, and prior anema can be big signs of lyme.
So far, you do not meet the CDC or the Igenex criteria for Lyme. The 41 band is meaningless in isolation: spirochetes can be present with gum disease, for instance. I would never agree to antibiotics with just a 41 band, and symptoms that are not overwhelmingly obviously Lyme.
The presence of the 58 band is interesting, though not Lyme specific either. I don't know much about the 58 band. Maybe someone else does.
The Elisa test is a lot more cross-reactive with other conditions, than the Western Blot. Autoimmune issues can affect the Elisa, for instance.
Have you had an ANA test? That tests for autoimmune activity. Autoimmune activity such as lupus can be mild, but involve hair loss as a prominent symptom. Treatment with Plaquenil, which also helps with tick-borne diseases, is the usual treatment for autoimmune problems, at least at first.
I do want you to know that one of my kids had a few aches and pains, but mainly just the feeling that she had an eyelash in her eye, for weeks. She tested highly CDC positive for Lyme! My other kid, who has been extremely ill for years, has never tested positive by CDC standards. (CDC is Center for Disease Control, and they require more bands than LLMD's or Igenex for a diagnosis of Lyme).
Overall, with your picture, I would not jump to the conclusion that you have Lyme, and I wonder how good a doctor this is. On the other hand, you can eliminate doubt by taking antibiotics for 4 weeks, and see if there is any response. Sometimes the response will not be improvement, but dramatic worsening, as the bugs die off (a "herx"). But, in a month, something will happen to let you know you are on the right track.
This trial worked with tetracycline in our family. Whatever is used, make sure the dose is high enough or you are wasting your time and exposing yourself to risks with no benefit.
Posted by a1yssa (Member # 23648) on :
Thanks. It's been 2 months since my hair has been falling out. All the other things, like the thrush (which I believe I got from my boyfriend), and my anemia (ran 70 miles per week and was very thin) years ago, all had explainations got better with the changes the doctor made.
No new symptoms. Like I said, I have been exercising, and feeling fine (knock-on-wood).
If my hair was not falling out(which by the way, it is not falling out so much anymore as I have been trying to de-stress), I would never even think anything was wrong.
I just got blood work done for any Autoimmune diseases and should get the tests back next week.
Am going to ask my PCP for a Lyme re-test since I finished the antibiotics about 10 days go.
Thanks for all your opinions. Good luck to you all!!!
Posted by disturbedme (Member # 12346) on :
a1yssa, what you need to do if you want a REALLY good lyme test, is be tested through IGeneX for lyme - not through LabCorp or Quest because they are not good tests and they even leave some of the bands on the Western Blot out.