I’m looking for someone who has similar symptoms / treatment. I’m being treated for Lyme Arthritis (Swollen knee. Infectious Disease prescribed about 2 1/2 months of Doxy followed by 28 days of IV Antibiotics (Ceftriaxone). At the end of 28 days, ID would not extend the Ceftriazone so I started to see a Lyme Literate doctor. She extended my IV Antibiotics for another 28 days and she also prescribed about 5 antibiotics and 7 supplements. However, over the course of taking her meds, my white blood count is now a little low and my liver function is slightly up. She recommended to start MOxi treatment with an acupuncturist, which has been scheduled. I’m just not comfortable with all of these meds the Lyme Literate doctor wants me to take. I also have a feeling she will want me to extend the IV antibiotics for a third month. In parallel to seeing the Lyme Literate doctor, I’m also seeing a rheumatologist who recently gave me a cortisone shot to help reduce fluid and swelling in my knee. The cortisone shot has helped a lot. He also wants to prescribe an anti-inflamtory drug at my next appointment. I guess the bottom line is that you have to listen to your body and absorb all of this information you hear from both Infectious Disease Socieity of America (IDSA) and Lyme Literate doctors and make the best educated guess for your health. Thoughts?
I’ll be blunt with my thoughts. What I read is you have taken months of antibiotics with no change so started more and now your health is taking a dump but you saw a doc who directly treated the problem and saw some improvement but you are not sure if he can continue to help you… But you seem willing to spend thousands of dollars out of pocket and continue to damage your body continuing what you have done, despite not getting better. AT LEAST THAT IS WHAT I READ.
The reason the ID doctor quit with the abx is they weren’t working and had reached the maximum known time for them to work. IF this all was all caused Lyme, you have PTLDS. This what the real docs treat, based on peer reviewed research (something neither Lyme Literate Doc don’t have and the IDSA doesn’t consistently work with, choosing instead hanging on to old science while trying to embrace the new)
What has happened is your prior disease and sadly some of the subsequent treatment has damaged your immune system. The primary result and symptom is inflammation. Its called Reactive arthritis (or Reiters Disease) The rheumatologist can help, its that simple. What you have been doing will not. Somewhere on this forum is the story of several who continued with the LLD type treatment after seeing no results and effects on their liver and blood counts. They are dead.
Those experiences of good people who we knew as well as others who had similar but not fatal experiences is WHY this sight changed to depends only on Evidence based peer reviewed science.
One of the facts confirmed in multiple studies by multiple organizations being there is NO additional improvement from ABX after 28 days. FWIW it is impossible for a conspiracy theory to exist in science. It is too easy to disprove. All the LLD movement has proven is that it is pure quackery at worst and misguided good intentions at best.
No one is denying you or anyone else is sick. But what is clear is that it is not from untreated infection. It is damage to the immune system and treating a non existent infection will do nothing more than further damge that system while upsetting systems that are functioning. You need your liver and one damaged in the way yours is starting can not be replaced.
Here is the science: Antibiotic-refractory arthritis (Lyme Arthritis) is associated with highly inflammatory strains of B. burgdorferi. Persistent infection in the post-antibiotic-period does not appear to play role in this outcome.
PCR testing of synovial fluid for B. burgdorferi DNA, which is often positive prior to treatment, is usually negative after antibiotic treatment, and both culture and PCR testing of synovial tissue have been uniformly negative from synovectomy specimens obtained months to years after antibiotic therapy. As evidence of immune dysregulation, patients with antibiotic-refractory arthritis have low frequencies of FoxP3+ regulatory T cells in synovial fluid; the lower the frequency, the longer the post-treatment duration of arthritis.
A novel human autoantigen, endothelial cell growth factor, was recently identified as a target of T- and B-cell responses in a subset of patients with Lyme disease, which provides the first direct evidence for autoimmune T- and B-cell responses in this illness. Despite heightened immune reactivity, antibiotic-refractory arthritis eventually resolves.
The immune system or with or without the assistance of antibiotic therapy, removes the innate immune “danger” signals. Without these signals, the adaptive immune response to autoantigens eventually regains homeostasis, and the arthritis resolves. This process may be facilitated by therapy with disease modifying anti-rheumatic drugs (DMARDs).
The ILDS actually agrees with this science but believes MORE ABX help. You average LLD has no clue what we are talking about. The call the removal of those innate immune “danger” signals “False Negatives”, blame the test and continue with antibiotics prolonging the symptoms. The declare a major victory when your body reacts to the antibiotics in a life threatening way “Herxing” convincing their patients they are close to a cure Just a few more thousand dollars will get them there. Sometimes they are lucky and the natural systems win and they take credit.
TJ, thanks for your candid response. So from your comments, I presume you don’t believe in the treatment Lyme Literate doctors prescribe? Do you believe in the theory that Lyme bacteria lies dormant and it’s not killed with Doxy and\or IV antibiotic treatment? What is your background? Are you a doctor or just well educated citizen like the rest of us? I’ve been on the LLD meds for about two weeks but have since stopped. Since I’m still taking Ceftrixone, I have my blood tested weekly. I have about two weeks left of Ceft. which will complete a 2 month cycle. Mentally and physically, I’m feeling much better and will not be pursuing any additional meds from LLD. Thank you!
I’m sorry you’ve had this so long. Just curious if you tried other meds first?
I’m just an over educated retired old fart who spent some time fishing with his good friend Willy Burgdorfer when we had a chance.
Run! Or limp away briskly, if that’s more your current speed. The so-called LLMD is treating you in a way that is a little scary. A visit to a good rheumatologist should be much more helpful than the current course of treatment. Lyme disease can leave lasting results even after treatment with antibiotics.
I’m seeing a great rheumatologist since February and my knee is making good progress. I regret seeing the Lyme Literate doctor. I ended up in the hospital for five days! I “think” it was a result of taking her crazy antibiotics along with a second month of ceftriaxone, which caused Gall Bladder sludge. Live and learn but I hope people read this and think twice about seeing Lyme Literate doctors!
You were right! I guess I had to learn it my way, which was scary! I ended up in the hospital for 5 days. Doing MUCH better now! Say no to Lyme Literate Doctors!