Wow this has been quite the experience. So I just found out from an early blood test in July 2015 that i had several reactive bands from a Lyme IgM and Igg western blot, but never tested definitively positive for Lyme according to the U.S. standards. I am now taking doxycycline for 3 days (400mg/day) and have noticed a substantial decrease in my head pain. I am going to continue treatment for Lyme disease for several months under the care of an infectious disease specialist. This disease is so elusive and actually presented itself with all of the symptoms of temporal arteritis!!! I am so glad I found this information out! I suppose the Lyme diagnosis makes so much more sense now since having temporal arteritis at such a young age would be so exceedingly rare!
I'm so pleased you have an answer at last Devin. I might have thought of Lyme if you had complained of just PMR symptoms - because they can be very similar in presentation - but it is very interesting to hear that it can present more like a temporal arteritis.
Do you live/spend leisure time in somewhere where ticks carrying Lyme disease form a risk? That is the obvious answer and I know how easy it is to miss a tick and the usual herald rash but I ask because there have been articles recently about whole families who have developed Lyme but who don't live in regions normally thought to be a risk area. Some are postulating that it may be passed on from mother to child in utero but remain dormant for very long periods - is there any family history that you know of?
Is the infectious diseases specialist confident you will make a full recovery? And how did you end up seeing him?
I have been an active hiker and dirt trail cyclist since childhood in NJ, USA where Lyme disease is prevalent among ticks, so there is a high probability for me to be exposed to a tick. There is no family history that I am aware of. The recovery process involves 3-6 months of strong antibiotic therapy. He is confident I will make a full recovery because the disease has not progressed to any uncontrollable advanced stages and is quite effectively treated with antibiotics and herbal medicines to detoxify the body. I ended up seeing the infectious disease doctor after reviewing an old blood test that showed positive Western blot bands specifically for Lyme without a doctor ever mentioning them to me since there weren't enough to confirm a diagnosis of Lyme. However the tests are highly unreliable and can frequently give false negative results, especially for a new infection or from someone with a poor immune system that is unable to make detectable amounts of antibodies to attack the infection.
Yes, I know about Lyme testing. Like everything else - it will be a real blessing when they can identify/develop really good and sensitive tests. One for GCA could have ruled out that option for example.
I do wish though that when something like your Western blots are seen they were flagged up for further observation rather than ignored because they are still insignificant. So many medics think it is black or white when really there are far more than 50 shades of grey!
All the very best Devin - in the nicest possible way I hope you don't need to come here again and everything goes well.
Devin, what a relief for you to finally have a diagnosis. I've come across a couple of people in the past who have been diagnosed with PMR with the diagnosis later being changed to Lymes. However, like PMRpro, I haven't heard of confusion between the symptoms of Temporal Arteritis and Lymes previously. You may need quite a long course of antibiotics to get the disease completely under control, depending, I suppose, on how long since you were infected. I hope you soon feel well enough to get your life back on track - good luck!.
OMG I've been suffering with GCA 9or so I think) for the past 4 and 1/2 years and was put on 90 mg of prednisone at first and have been up and down since. Lately I was down to 5 mg and then the pressure in my head started again and my neurologist put me up to 20 mg but the pressure is still here. After reading your story I'm wondering if I to may have Lyme disease as my dr said that my head pressure isn't related to GCA and that I should go to my family dr and have him send me to either a rheumatologist or an inter medicine specialist. I was 55 when this started and the dr.s told me I was too young to have this. How old were you when this happened and what made you think this was Lyme disease? I'm so glad I read your post, please let me know. Thank you and I hope you are doing a lot better.
One thing the docs WERE wrong on is that you are too young - no you aren't. the latest guidelines, about to be published, have taken the normal age range down to over 50 but I know a few people who have imaging/biopsy proven GCA in their 40s - after being told they were too young too! The youngest absolutely sure case of GCA I know of was a 37 year old man in South Wales who died of a stroke a couple of years ago. At autopsy they found he had GCA - the pathologists know it all.
But getting your GP to do a test for Lyme's would be one thing to rule out.
I was diagnosed withPMR in September and put on 10mg of prednisone, after 2 weeks I was increased to 20mg Blood tests came back showing some positive bands for Lymes disease. Blood was sent to a lab in California, showed positive. Prednisone was reduced to 10 mg and put on Amoxicillin for 3 weeks. Still aches and stiffness in my hands and upper arms. Rheumotologist referred me to an Infectious dr.he reviewed blood tests and put me on another antibiotic and took more blood and sent it to stony brook, l.i., New York. Results cAme back, mostly negative and 1band showed indeterminate. I am now on antibiotics for a month. Some of the aches and stiffness seem a little better. The symptoms for PMR and Lymes are very similar, therefore I am confused as to exactly what I truly have. Or do I have both
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