Protected: 4 distinct post-treatment Lyme disease syndromes?

Man holding head, looking tired from post treatment lyme disease

In a recent editorial, Dr. Allen Steere describes the clinical features and proposed mechanisms triggering what he believes are 4 distinct post-treatment Lyme disease syndromes (PTLDS) in patients who fail antibiotic treatment for Lyme disease. [1]

 

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13 Replies to "4 distinct post-treatment Lyme disease syndromes?"

  • Alison
    12/29/2020 (8:53 am)
    Reply

    Using a 2014 study to support his theory with 36 patients and one-third of them being his control group? Most others references were all based on his lunacy. I get so angry thinking anyone pays attention to the likes of this “Physician”. I was diagnosed 20 years ago in Ct. Although I was treated well by some of the best ILADS Doctors- I am living proof That Chronic LD exists. Ten years of remission and poof- gone in a minute! There was little or no testing for co-infections back then although I was treated for two of them for a while. Treatment options are near impossible having moved to a Southern State that denies LD exists here. Thank you for all your work Dr. Cameron. he best I can offer is to educate others so they learn and seek treatment soon!

  • Teresa Caruthers
    12/28/2020 (1:19 pm)
    Reply

    The doc I’m seeing to treat Lyme put me on clarithromycin and cefuroxime twice a day . No length of treatment but provided 30 day supply with 1 refill. Unable to call MD to ask if I take it 30 or 60 days. Any thoughts? His office reopens 1/4/2021

    • Dr. Daniel Cameron
      12/28/2020 (7:09 pm)
      Reply

      1/4/21 is nearly here. I would typically extend therapy few a days until I could make an appointment for a reassessment. I cannot comment on your treatment.

  • David
    12/28/2020 (9:38 am)
    Reply

    Dr Cameron, in addition to (or apart from) borrelia/lyme infections, have you found other bacteria to be “persistent” such as Tularemia, Bartonella, Brucella and Babesia? Thank you sir,

    • Dr. Daniel Cameron
      12/28/2020 (7:06 pm)
      Reply

      I am not sure any one has looked at other infections.

  • Susan
    07/15/2020 (6:52 am)
    Reply

    I have had lyme doxi treatment numerous times over last few years. I now have a painful 2.5 cm lump in a groin lymph node. The lyme test shows prior lyme infections. Have you seen lymphoma from lyme after treatment? My primary thinks I push a lyme diagnosis too much as the root cause of fibromyalgia and brain fog.

    • Dr. Daniel Cameron
      07/15/2020 (7:11 am)
      Reply

      I have not seen Lymphoma after treatment for Lyme disease. You need to see a doctor, i.e. surgeon or oncologist for an evaluation. I have patients with both Lyme disease and cancer. I have had to treat their Lyme disease along with their oncologist. Call my office at 914 666 4665 if you have any questions.

    • Suzanne Meub
      12/28/2020 (8:09 am)
      Reply

      Does your pcp have any other ideas .. what’s wrong with treating your symptoms … just don’t bundle everything into one diagnosis because those words, chronic Lyme can bring a shit storm down on the the pcp’s head … I have the same issues as you do plus post sepsis syndrome which gets the same treatment .. they seem more open to post Covid symptoms which appear to be similar to both post Lyme and post sepsis .. they all three share massive inflammation as a common thread .. perhaps the post Covid issues will drive research that could help us all

  • Kikiwik
    07/07/2020 (12:44 pm)
    Reply

    Question about the use of “post-treatment” language. Do these syndromes apply only to those who were treated while in acute phase? Or to anyone post-acute? For example, in my case, my bite was confirmed many years after the fact, and I had never had treatment, but certainly have post-acute-stage issues. In other words, are the syndromes above truly related to the typical treatments applied during acute stage, or to the Lyme infection itself?

    • Dr. Daniel Cameron
      07/07/2020 (3:08 pm)
      Reply

      I am not a fan of the term “post-treatment” as some doctors assumed there is no evidence of persistent infection. Some have used the term if symptoms persist after 3 weeks of antibiotics.

      • Kikiwik
        07/07/2020 (5:56 pm)
        Reply

        Ok, are you saying that these 4 syndromes are really post-infection, and not related to the treatment itself? But using the “post-treatment” label out of convenience. What I’m trying to understand is whether these syndromes result from the treatment or result from the infection.

        • Dr. Daniel Cameron
          07/07/2020 (7:40 pm)
          Reply

          They four syndromes are from the infection. The doctor assumes the infection has cleared.

  • Ernestine _
    07/01/2020 (9:36 am)
    Reply

    Everything said is true. I’m sensitive to sounds. My skin is weak. The body is boiling inside from the pain. The knees are so bad. It feel like tones put on my body. The list goes on. 21 days treatment for late stage infection of this kind will not be enough. Result : is hell on earth. (That the life I’m living)


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