This forum is for questions and support regarding What Causes Lyme Disease, Diagnosing Lyme Disease, Joint Pain issues, Living with Lyme Disease, Nervous System issues, Prevention, Risk Factors, Skin Disorders, Symptoms and Treatments.
I have doubts that I have Lyme. I went to my PCP who referred my to an allergist because my hair was falling out (diffuse not patchy loss). My PCP did not test me for Lyme because of no typical lyme symptoms.
My allergist tested me for Lyme and she said I had it. Her reasoning was because I tested abnormal for band 41 on both the IgM and IgG. Plus, abnormal for band 58 on the IgG.
She perscribed the 21 days of doxy.
My hair is still falling out after treatment, I still have no fatigue or joint pain.
My question is, what would cause a positve band 41 on the IgM??? That means a current bactrial infection??? I really don't think I have lyme but what would cause that???
Would hair loss be my only symptom if I did have lyme???
Weird. Any info would be helpful...
(Also, all my blood work has come back fine - thyroid, vitamins, auto immune, etc)
Band 41 (according to what I read) is a marker for 'flagellin protein of all spirochetal bacteria' -- in other words, a bit of the swishing tail of the little bug. Lyme is not the only spirochetal bacterium, so being positive for band 41 may or may not mean Lyme.
Band 58 'may be' a Lyme indicator, but it is not a strong one. The list I printed out says it may be a 'heat shock protein' from the Lyme bug, which I think means something that shows up in tests after the bug has been fried in the test tube. Some of the scientists here can correct me, please. But in any event, it's not a strong Lyme indicator.
==> Were you tested for tickborne illnesses other than Lyme disease, like babesiosis, bartonella, ehrlichiosis and some others? Ticks are nasty creatures that often drag several diseases along with them. I had Lyme and babesiosis, then when I was pretty much cured, I got another tick bite that gave me HGE aka Anaplasmosis phagocytophilum. Interestingly it was only when I got HGE that ... like you ... my hair fell out!
I have not heard anyone else here mention that particular symptom that I can recall, but then my memory is mush sometimes.
My Lyme MD prescribed doxy for the HGE, but I have not yet taken it. So if you had HGE, you may be cured after the doxy.
I have a question for you: what side effects did you get from the doxy? I'm afraid to take the stuff. Very sensitive to meds and not sure what the doxy would do to me. Would you let me know how it went for you?
Have you been re-tested since the 21 day course of doxy? The Western blot tests for Lyme indirectly. It doesn't look for the bacteria itself, but instead looks for the antibodies the immune system makes to fight it.
It is theorized that many patients with Lyme test negative, but that a short course of antibiotics can activate the immune system and the test will then turn out positive. This is often referred to as the "antibiotic challenge." I've read that you should be off of antibiotics 10 days prior to retesting.
I am not a medical doctor, but in your shoes, I would continue to seek further testing and opinions. Lyme can present differently, but having hair loss as the one and only symptom seems unlikely in a systemic inflammatory disease.
Thyroid problems can also be difficult to diagnose, though that would also probably cause more symptoms like fatigue, it comes to mind as a cause fore hair loss.
I hope that continues to be your only symptom and that the correct cause and solution are found.
Jackie - the docy was not bad. I only had 100mg 2x a day. You cannot eat 2 hours before. I found I would get mild nausea if I took it with out eating breakfast. So I would eat at 7 and take the pill around 9am. Did not get any nausea when I ate 2 hours before.
Wonko - I left a message for my doctor to request more blood work. I finished the doxy about 10 days ago so hopefully if I really do have lyme, more bands will show.
I really hate not knowing. I mean, I do not want to go through my life thinking I have some dormate form of lyme and waiting for it to pop back up.
My hair loss has appeared to slow since finishing the meds, but this type of slow happened before the meds too.
I have doubts about having lyme. I only saw a post from one girl on another message board who said that her hair falling out was her first symptom and it went on for a few months before more came.
I don't know. I would just think I would be a bit tired, or achy, or something else. I mean, it is an inflammatory disease.
I hate that there is no test to tell for sure. It is driving me nuts.
Here's a thought for you: maybe you don't have Lyme but have one of the co-infections that the same ticks can carry, which is why your symptoms like hair loss are not very Lyme-ish.
My hair loss, like yours, was diffuse, not patchy. (I got bit with HGE in about May, my hair started falling out in about June/July and kept on for a while, and now it's all growing back in, an inch or more long already. It was a good 3 to 4 months before the re-growth started.)
So there could be a reason that you didn't test positive for Lyme ... maybe you don't have Lyme, but one of the other lovely diseases that ticks can bring.
That said, I would in your shoes do what you are doing ... an abx challenge then retest for Lyme. I would also ask at your next appointment to be tested for the other diseases that sometimes come along with Lyme: babesiosis, Rickettsia (which includes HGE), bartonella, and the other ones commonly mentioned as co-infections of Lyme, if the symptoms seem to fit ... tho one thing many of us have learned is that our symptoms are often different from person to person.
Thanks for the encouragement about doxy. I have some things to take care of in the next couple of weeks, but after that when I have a little lull, I'll pluck up my courage and take the meds. I think. :)
Hang in there. Let us know what you decide and how it goes.
So I don't know what to think of this... My hair loss decreased dramatically - pretty much almost back to normal. I finished my antibiotics on December 24th (so about a week and a half ago). What should I think?
I really had doubts about the Lyme, but then how do I explain why the 2 months of hair loss has stopped after antibiotics??? I wonder if I could of had another bacterial infection (explaining band 41) and the antibiotics cleared it up.
I am looking into h. pylori as another possible cause. I had oral thrush back in August, and then hair loss. Those are two symptoms of h. pylori. I do have a few others as well. Left a message with my doctor.
My fear is that it was not lyme, and if my hair loss returns, I do not want to think I have lyme when I really don't. I need to get to the bottom of this...
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