For almost 10 years I have had joint pain ,fatigue, lately short term memory loss. I am a nurse for a group of Urgent Care/ER. So we tested me for a lot of things including RA factor ANA and lyme western blot IGG abd IGM…the Ana was negative. The RA factor was very elevated and I tested positive for 5 bands in the western blot igg and the igm was negative…the ordering physician said I don’t have Lyme disease but see a rheumatologist…the health department was notified by the lab that I was positive for lyme and my pcp called 2 other doctors and they said I do have it. I began treatment of doxy…got allergic so im day 2 of amoxil…I have appointment with a specialist in 2 weeks… I am wandering why one doctor said I do not have it and need no treatment and one of my coworkers acts like im faking or seeking attention. I am so anxious an horrified… Could the first doctor be right , that I don’t have Lyme’s…sorry my thoughts are all over the place.
I am no doctor but I think the first thing to realize is that many doctors are generally in denial about long term Borrelia infection, or simply do not know.
My daughter had been suffering similar symptoms for several years and the best the doctors could do was tell her to learn to live with the pain. I have learned that most tests test for an immune response. There are others that actually look to identify the bacteria using genetic beacons, but although potentially far more accurate, they are largely unrecognized by the establishment. If you have been suffering symptoms for years, it is likely the bacteria are well established and likely have formed biofilm colonies in self defense; thus you will have little or limited immune response. My daughter had virtually no indication on a western blot, but two strains of Borrelia were visually identified using Genetic Beacons by a well regarded Pathologist recently retired in Florida who was running a study on this technique.
Be aware though that Borrelia is likely the tip of the ice-burg and that you also need to test for tick borne co-infections which could also play a role and can be equally nasty.
I don’t know where you live, so can’t really say much more. I am in Europe and after much effort found a lab in Germany that specializes in tick borne disease - I understand there is one in California too. I also found a Physician, in Germany, who has been treating my daughter, there are none where I live in the UK, but the road to recovery following a long term infection with Borrelia is a long one.
In the end, you know what and how you feel and doctors are, after all, only practicing…
thank you… I ended up at the er today with tremendous headache my bp was 198/98…never had problems with bp before… I am on bed rest and soon as I got a shot for the pain it brought it down to 160/90… I am hopeful that the doctor i’m going to on July 12th can get this in remission…thanks so much for the reply… I live in the south United States in Birmingham,Al. with one of the biggest teaching hospitals in the US. few specialist here but it is a start
Hi, Regina
Sorry you are going through this: it’s miserable. I’m no doctor either, and while we give personal opinions, we don’t pretend to diagnose here. Are you going to go see a rheumatologist anyway? (I’m thinking that having a rheumatologist see you in the condition you’re in now might serve you well at some point down the diagnostic road.) Meanwhile, here’s an article that you might be interested in. And keep us in the loop!
Seenie from Moderator Support