Home Forums General Discussion Help interpreting CT results

Viewing 6 posts - 1 through 6 (of 6 total)
  • Author
    Posts
  • #307581
    ellie6
    Participant

    My Rheumy left a message today with the results of my pelvic CT. He said based on the results he feels I should try a med like enbrel. I went and picked up a copy of the report.

    Findings:
    There is asymmetric bilateral subchondral sclerosis predominantly involving the iliac bones at the sacroiliac joints, left side greater than right. There is mild narrowing of the left sacroiliac joint with partial ankylosis posteriorly at the inferior margin. There is bridging osteophyte formation along the ventral margin of the joint space. There is preservation of the right sacroiliac joint space. There is no sacral fracture.

    Impression:

    Bilateral, asymmetric sclerosis of the sacroiliac joints, left side greater than right.

    What does all this mean? Do these results point towards a particular condition? I know he was thinking along the lines of psoriatic arthritis. Not sure how I feel about enbrel. Based on these results would diet, antibiotics, chiropractic help??

    #368550
    Maz
    Keymaster

    @ellie6 wrote:

    What does all this mean? Do these results point towards a particular condition? I know he was thinking along the lines of psoriatic arthritis. Not sure how I feel about enbrel. Based on these results would diet, antibiotics, chiropractic help??

    Ellie, I’m just a patient, but usually when the sacroiliac joints are involved, it is related to either ankylosing spondylitis or psoriatic arthritis. There is a forum member here, DragonSlayer (John), who should be able to provide you with dietary information and his website is very informative with regard to research on causative pathogens (e.g. Klebsiella pneumoniae, Proteus Mirabilis, Chlamydia Pneumoniae/Trachomatis, etc):

    http://www.kickas.org

    John beat his AS with a combination of diet and antibiotic therapy and you can read his story here:

    viewtopic.php?f=3&t=872

    A combination protocol is a reasonable way to go for folks with ReA, AS and PsA, including a tetra, a macrolide and a nitroimidazole, similar to the http://www.CPNhelp.org protocols, but perhaps John could offer better insight on this for you. Certainly, diet seems to play a large role for rheumatic diseases in this family and starches seem to be one of the worst offenders, along with nightshades. My MIL has both PsA and AS and she has to avoid potatoes and uncooked tomatoes like the plague or her fingers swell like sausages within an hour or two of consumption.

    Here is info on the Spondylitis Assoc of America website, describing the HLA B27 gene, which can be tested for. Although in combination with symptoms it will confirm diagnosis, absence of the gene doesn’t necessarily exclude diagnosis and some folks have the gene and never develop the disease either:

    http://www.spondylitis.org/about/as.aspx

    JD Carter, rheumatologist, in FL, and lead author of the following study found that a couple different combinations of abx helped folks with reactive arthritis who also have concomitant infection with either chlamydia pneumoniae or trachomatis:

    http://www.ncbi.nlm.nih.gov/pubmed/?term=reactive+arthritis+azithromycin+rifampin+doxycycline

    As you’ve also been diagnosed with Lyme, you might find it interesting to know that at the Boston ILADs conference last fall, there was a speaker, Armin Schwarzbach, MD, PhD, who talked about the complicating factors involved in these two infections – Lyme and Chlamydia. I have a link to his slides, if you’re interested in seeing them.

    #368551
    ellie6
    Participant

    Thanks Maz, Im finding this all so confusing and overwhelming…I really don’t know where to start. Do I need meds like enbrel to stop the progression?? After a yr on antibiotics for lyme I just dont know if my gut can handle more antibiotics, nor if my LLNP would prescribe them. In the past I have felt worse on antibiotics, attributing it to herxing, but now I wonder if it was just causing more inflammation which in turn was causing more pain..My LLNP seemed to think once I healed my gut the inflammation in my body would go away…Do you think that’s true? Do these results read like inflammation or permanent joint changes. I knwo if I go back to the Rheumy he will push the enbrel. He is not into abx and is not a believer in long term treatment for lyme. I will have to look at my previous testing but I know I test positive for mycoplasma and EBV for past infections, not present, whatever that means, lol..which typew of practitioner do I go towards for all these issues??

    #368552
    lynnie_sydney
    Participant

    sorry to be dense but what is an LLNP? How does this differ from an LLMD – Lyme Literate Medical Doctor?

    Be well! Lynnie

    Palindromic RA 30 yrs (Chronic Lyme?)
    Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
    rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
    Diet: no gluten, dairy, sulphites, low salicylates
    Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

    #368553
    ellie6
    Participant

    An LLNP is a Lyme Literate Nurse Practitioner. I had no idea what all these meant before lyme either.

    #368554
    Maz
    Keymaster

    Do I need meds like enbrel to stop the progression??

    Hi Ellie,

    I empathize and know all of this can feel overwhelming…you have friends here who understand. I wish I could offer advice to you on your treatment options, but as I’m just a patient, too, it would be wrong of me to influence you one way or another. This is really something you will need to read all the literature on and then to make an informed decision with your treating docs. As you also have Lyme, it is worth noting that there has been research posted on the Columbia University Lyme website that was done in Turku, Finland, on mice, whereby Lyme-infected mice were treated with IV ceftriaxone (antibiotic aka rocephin commonly used in Lyme txs) that became seronegative after treatment, but when later given a TNF medication (a biologic like Enbrel and Humira), live spirochetes were then cultured from them. Seems the immune-suppression reactivated the Lyme, at least in the mouse model. You’ll find this research discussed here on the Columbia Lyme website:

    http://columbia-lyme.org/research/keyarticles.html

    Commentary. These two studies demonstrate that Bb spirochetes can persist in the mouse after ceftriaxone therapy. The Finish study was remarkable in that culture and PCR were negative after ceftriaxone but, after additional treatment with anti-TNF-alpha, viable spirochetes were recovered. TNF is a pro-inflammatory cytokine which, when blocked, typically results in a reduction in clinical inflammation; for this reason, such treatment is used for patients with rheumatoid arthritis. To the surprise of the authors, viable spirochetes were recovered in these PCR- and culture-negative mice after TNF blocking treatment was given. Also interesting is that anti-TNF treatment did not result in the expected finding of a reduction of joint swelling.”

    Here is the actual study:

    http://www.ncbi.nlm.nih.gov/pubmed/17436229

    That said, I know of two rheumatologist LLMDs (one in NJ and one in VA) who both will use biologics, like Enbrel or Humira, on their RA/Lyme patients and Susan who posted here recently was one of those patients who could share more with you, if you PM her. Here is a link to her recent thread:

    After a yr on antibiotics for lyme I just dont know if my gut can handle more antibiotics, nor if my LLNP would prescribe them.

    Ellie, would you be so kind as to send me a PM with the name/contact info of your LLNP? Just want to see if we have her listed. It is strange that she would be unwilling to rx you abx therapy, as LLMDs, for the most part, those affiliated with ILADs follow the ILADs/Burrascano treatment guidelines. I’m just wondering her level of experience and if it may be helpful for you to seek out a new LLMD?

    In the past I have felt worse on antibiotics, attributing it to herxing, but now I wonder if it was just causing more inflammation which in turn was causing more pain..My LLNP seemed to think once I healed my gut the inflammation in my body would go away…Do you think that’s true?

    Some RA/Lyme patients are extremely hypersensitive. We’ve had folks here who were having trouble with 25 or 50mg minocycline once per week! In fact, Dr. Brown describes this phenomenon in one of his talks on Hypersensitivity, if you’d like me to send you a copy. Certainly, gut inflammation can be a pesky problem to heal and get around with treatment, but working with an experienced doctor can make a tremendous difference. You may actually also like to connect with Michele (one “l”) on the forum, as she was in this boat and discovered that part of her problem was the protozoan coinfection, babesiosis, problems with detoxification and having to work at chelation (biofilms in the gut can be a real nuisance).

    Do these results read like inflammation or permanent joint changes.

    Unfortunately, once joint damage has occurred, it cannot be reversed….although there are experimental adult stem cell procedures (using ones own stem cells cells from fat or bone marrow) available that are having good success in repairing damaged joints and modulating inflammation. Hopefully, in years to come, these in-office procedures will be standard of care and will just involve walking into a doctor’s office, having the treatment and having it covered by insurance!

    I knwo if I go back to the Rheumy he will push the enbrel. He is not into abx and is not a believer in long term treatment for lyme. I will have to look at my previous testing but I know I test positive for mycoplasma and EBV for past infections, not present, whatever that means, lol..which typew of practitioner do I go towards for all these issues??

    The type of LLMD and degree of experience you can see will largely depend on where you’re located, how far you’re willing to travel and if paying-out-pocket is an option. If you want to give me a ring, we can have a chat about all this and put our heads together. Just send me an email to maz@roadback.org and I’ll get back to you with my phone number.

    Try to hang in there, Ellie. There is much that can be done to turn around these diseases and, if you do ultimately decide to go on a biologic drug, this won’t preclude you from continuing to work on your infectious causes, your gut, and to later come off this medication, just as Susan has done. 🙂

Viewing 6 posts - 1 through 6 (of 6 total)

You must be logged in to reply to this topic.