4 ms·

Ankylosing Spondylitis is a closely related disease, treated with the same anti-TNF biological drugs. There is 30 years of contradictory research on the associ

Ankylosing Spondylitis is a closely related disease, treated with the same anti-TNF biological drugs. There is 30 years of contradictory research on the association of the disease with the bacteria Klebsiella pneumoniae. So far, it has come to nothing. https://pubmed.ncbi.nlm.nih.gov/1561397/ https://pubmed.ncbi.nlm.nih.gov/1561397/ https://pubmed.ncbi.nlm.nih.gov/29438717/ https://pubmed.ncbi.nlm.nih.gov/29438717/

spondylosaurus 3y ago
Came here to mention AS and the klebsiella hypothesis. Like you said, nothing conclusive has come out of it (and certainly no evidence of using antibacterial treatment successfully to treat AS), but I still find it super interesting considering the high comorbidity between AS and intestinal diseases like Crohn's and ulcerative colitis. IIRC some of the more recent "AS is a form of reactive arthritis" truthers have focused on gut infections specifically as the pathway. Big grain of salt, of course. Thankfully even if we can't pinpoint its exact etiology we still have a million proven drugs to throw at this thing.
- virgulino 3y ago
  I started with a diagnosis of reactive arthritis (still called Reiter's Syndrome at the time), after an intestinal infection. After 10 years of feeling fine and unmedicated, but with occasional flare-ups, I suddenly went downhill and my diagnosis was changed to ankylosing spondylitis (modified New York criteria). To my knowledge, there is very little research on the separation or progression between reactive arthritis and ankylosing spondylitis.
  - spondylosaurus 3y ago
    That's brutal. I hope you're doing alright these days.
    - virgulino 3y ago
      I loved your username "spondylosaurus", it made me laugh, thank you. I wish you well too. Cheers!
  - doetoe 3y ago
    I cannot really add anything useful, but my progression was so similar in all senses that I thought I should comment: it started after an intestinal infection I got in India, many different hypotheses until they settled on Reiter's syndrome/reactive arthritis. Then for 12 years I was without real symptoms or medication, though with almost chronic back pain. A new bout 12 years later (knees like grapefruits etc), diagnosed now as ankylosing spondylitis. In fact I had understood that this was a specific form of reactive arthritis (rather than something different), but probably you're right.
atombender 3y ago
There's also psoriasis (and psoriatic arthritis), where it's been firmly established that one subtype — guttate psoriasis — is triggered by _Streptococcus pyogenes_, which also causes strep throat, which is very common. This is a strain of bacteria that can also cause rheumatic fever, which has an autoimmune component; it's capable of molecular mimicry, which causes the body to develop antibodies against itself. So the thinking goes that many strep bacteria can linger in the body and cause autoimmunity.
- culopatin 3y ago
  My mom has this had this disease for at least 40 years and I’d love to find something else for her to try. How can one tell if hers is triggered by this bacteria? Any tests?
  - atombender 3y ago
    No, there's no such test. Doctors typically test for strep after you've had strep throat, but the test is only positive if you have strep bacteria in the throat. The idea behind the streptococcal hypothesis is that you have a sub-clinical infection. There's a lot of uncertainty about whether strep bacteria merely act as a trigger — confusing the immune system into developing autoimmunity, but then disappearing — or whether bacteria remain in the body, hiding in places like the tonsils and in biofilms and periodically coming out to reinfect the host. About molecular mimicry, Helgi Valdimarsson and his colleagues at the university of Reykjavik has written several papers [1] [2]. The same team has also experimented with whether a tonsillectomy can improve psoriasis, something we actually have a lot of evidence for [3]. The biofilm hypothesis has some clinical evidence (e.g. [4]). Regarding things your mom can do that's actually supported by studies: * A recent study on the probiotic Streptococcus salivarius K12 against S. pyogenes saw incredible (many too incredible) results [5]. * We have some support for other probiotics [6]. * There's decent evidence that large doses (10K–30K IU daily) of vitamin D2 and D3 may help psoriasis [7]. Psoriatics are, pretty consistently, vitamin D-deficient. It's very hard to achieve hypervitaminosis, but it's a good idea to monitor your serum levels while doing this. It's important to take vitamin K2 to increase bioavailability and avoid bone loss. * Psoriasis severity is linked to being overweight, to alcohol consumption, and to smoking. * There's anecdotal evidence that a radical diet change can significantly improve psoriasis; for example, going vegetarian. I don't have any proof, however. [1] https://pubmed.ncbi.nlm.nih.gov/19781993/ https://pubmed.ncbi.nlm.nih.gov/19781993/ [2] https://pubmed.ncbi.nlm.nih.gov/15373909/ https://pubmed.ncbi.nlm.nih.gov/15373909/ [3] https://pubmed.ncbi.nlm.nih.gov/22491250/ https://pubmed.ncbi.nlm.nih.gov/22491250/ [4] https://www.walshmedicalmedia.com/open-access/psoriasis-a-sequela-of-streptococcal-infection-similar-to-acute-rheumaticfever-2327-5073-1000244.pdf https://www.walshmedicalmedia.com/open-access/psoriasis-a-se... [5] https://www.researchgate.net/publication/359856583_Improvement_of_Psoriasis_Using_Oral_Probiotic_Streptococcus_salivarius_K-12_a_Case-Control_24-Month_Longitudinal_Study https://www.researchgate.net/publication/359856583_Improveme... [6] https://www.medicaljournals.se/acta/content/html/10.2340/00015555-3305 https://www.medicaljournals.se/acta/content/html/10.2340/000... [7] https://www.hindawi.com/journals/drp/2019/5237642/ https://www.hindawi.com/journals/drp/2019/5237642/
chabes 3y ago
I have a sibling that has been diagnosed with AS, along with a handful of other related diseases, such as juvenile rheumatoid arthritis. The specialists can’t concur with their own conclusions, let alone the conclusions of others. Diagnosis changes every few years. It’s a confusing situation for the patient and their family. One treatment that is used for a specific condition might have harmful - even carcinogenic -side effects. It’s difficult
- spondylosaurus 3y ago
  I hesitate to give unprompted quasi-medical advice to a stranger online, but if the potentially harmful treatment you're referring to is biologic therapy, just know that millions of people have taken TNF inhibitors for decades to positive ends. There are risks, to be sure, but not necessarily greater than the risk of untreated autoimmune disease—runaway inflammation is linked to heart problems, for example, and untreated Crohn's/colitis massively increases your risk of colorectal cancer. I mainly mention this because I was terrified of starting Humira when I got diagnosed with AS years ago—those black box warnings are legit scary. But I had to weigh the risk of maybe developing a rare side effect versus the guarantee of my spine permanently fusing and my immune system burning everything else to the ground out of spite, and ultimately went for the Humira. And I'm glad I did, because my quality of life has improved massively. Which is all to say that I hope your sibling's doing okay and found a treatment that works for them. It's scary out here, but there's hope, I promise.
  - alanmoraes 3y ago
    Thank you for your testimonial on Humira.
  - ekianjo 3y ago
    Problem with biologics is that you can never really know how long you can take them. Some people who take them for years all of a sudden stop tolerating them and have to drop out of using them
    - ekianjo 3y ago
ankit219 3y ago
I have AS. Diagnosed or rather verified on the sole basis of presence of HLAB27 antigen. Luckily it's peripheral, but it was detected pretty late in the cycle. The doctor was super helpful. I realize the how this is an evolving science when I shared the reports with a friend who studied medicine for 8 years, and her reaction was total surprise about the tests, medicines, and injections I was given. Only thing that has worked so far is Adalipca injections and they too need to be taken atleast once every year (two at a time). (Edit: The doctor told me pointblank that we dont know what could have triggered it) I read somewhere that a startup was working on controlling Immune system response via some brain waves. I have never rooted so strong for any startup as I am rooting for them.

spondylosaurus 3y ago

Came here to mention AS and the klebsiella hypothesis. Like you said, nothing conclusive has come out of it (and certainly no evidence of using antibacterial treatment successfully to treat AS), but I still find it super interesting considering the high comorbidity between AS and intestinal diseases like Crohn's and ulcerative colitis. IIRC some of the more recent "AS is a form of reactive arthritis" truthers have focused on gut infections specifically as the pathway. Big grain of salt, of course. Thankfully even if we can't pinpoint its exact etiology we still have a million proven drugs to throw at this thing.

virgulino 3y ago
I started with a diagnosis of reactive arthritis (still called Reiter's Syndrome at the time), after an intestinal infection. After 10 years of feeling fine and unmedicated, but with occasional flare-ups, I suddenly went downhill and my diagnosis was changed to ankylosing spondylitis (modified New York criteria). To my knowledge, there is very little research on the separation or progression between reactive arthritis and ankylosing spondylitis.
- spondylosaurus 3y ago
  That's brutal. I hope you're doing alright these days.
  - virgulino 3y ago
    I loved your username "spondylosaurus", it made me laugh, thank you. I wish you well too. Cheers!
- doetoe 3y ago
  I cannot really add anything useful, but my progression was so similar in all senses that I thought I should comment: it started after an intestinal infection I got in India, many different hypotheses until they settled on Reiter's syndrome/reactive arthritis. Then for 12 years I was without real symptoms or medication, though with almost chronic back pain. A new bout 12 years later (knees like grapefruits etc), diagnosed now as ankylosing spondylitis. In fact I had understood that this was a specific form of reactive arthritis (rather than something different), but probably you're right.

atombender 3y ago

There's also psoriasis (and psoriatic arthritis), where it's been firmly established that one subtype — guttate psoriasis — is triggered by _Streptococcus pyogenes_, which also causes strep throat, which is very common. This is a strain of bacteria that can also cause rheumatic fever, which has an autoimmune component; it's capable of molecular mimicry, which causes the body to develop antibodies against itself. So the thinking goes that many strep bacteria can linger in the body and cause autoimmunity.

culopatin 3y ago
My mom has this had this disease for at least 40 years and I’d love to find something else for her to try. How can one tell if hers is triggered by this bacteria? Any tests?
- atombender 3y ago
  No, there's no such test. Doctors typically test for strep after you've had strep throat, but the test is only positive if you have strep bacteria in the throat. The idea behind the streptococcal hypothesis is that you have a sub-clinical infection. There's a lot of uncertainty about whether strep bacteria merely act as a trigger — confusing the immune system into developing autoimmunity, but then disappearing — or whether bacteria remain in the body, hiding in places like the tonsils and in biofilms and periodically coming out to reinfect the host. About molecular mimicry, Helgi Valdimarsson and his colleagues at the university of Reykjavik has written several papers [1] [2]. The same team has also experimented with whether a tonsillectomy can improve psoriasis, something we actually have a lot of evidence for [3]. The biofilm hypothesis has some clinical evidence (e.g. [4]). Regarding things your mom can do that's actually supported by studies: * A recent study on the probiotic Streptococcus salivarius K12 against S. pyogenes saw incredible (many too incredible) results [5]. * We have some support for other probiotics [6]. * There's decent evidence that large doses (10K–30K IU daily) of vitamin D2 and D3 may help psoriasis [7]. Psoriatics are, pretty consistently, vitamin D-deficient. It's very hard to achieve hypervitaminosis, but it's a good idea to monitor your serum levels while doing this. It's important to take vitamin K2 to increase bioavailability and avoid bone loss. * Psoriasis severity is linked to being overweight, to alcohol consumption, and to smoking. * There's anecdotal evidence that a radical diet change can significantly improve psoriasis; for example, going vegetarian. I don't have any proof, however. [1] https://pubmed.ncbi.nlm.nih.gov/19781993/ https://pubmed.ncbi.nlm.nih.gov/19781993/ [2] https://pubmed.ncbi.nlm.nih.gov/15373909/ https://pubmed.ncbi.nlm.nih.gov/15373909/ [3] https://pubmed.ncbi.nlm.nih.gov/22491250/ https://pubmed.ncbi.nlm.nih.gov/22491250/ [4] https://www.walshmedicalmedia.com/open-access/psoriasis-a-sequela-of-streptococcal-infection-similar-to-acute-rheumaticfever-2327-5073-1000244.pdf https://www.walshmedicalmedia.com/open-access/psoriasis-a-se... [5] https://www.researchgate.net/publication/359856583_Improvement_of_Psoriasis_Using_Oral_Probiotic_Streptococcus_salivarius_K-12_a_Case-Control_24-Month_Longitudinal_Study https://www.researchgate.net/publication/359856583_Improveme... [6] https://www.medicaljournals.se/acta/content/html/10.2340/00015555-3305 https://www.medicaljournals.se/acta/content/html/10.2340/000... [7] https://www.hindawi.com/journals/drp/2019/5237642/ https://www.hindawi.com/journals/drp/2019/5237642/

chabes 3y ago

I have a sibling that has been diagnosed with AS, along with a handful of other related diseases, such as juvenile rheumatoid arthritis. The specialists can’t concur with their own conclusions, let alone the conclusions of others. Diagnosis changes every few years. It’s a confusing situation for the patient and their family. One treatment that is used for a specific condition might have harmful - even carcinogenic -side effects. It’s difficult

spondylosaurus 3y ago
I hesitate to give unprompted quasi-medical advice to a stranger online, but if the potentially harmful treatment you're referring to is biologic therapy, just know that millions of people have taken TNF inhibitors for decades to positive ends. There are risks, to be sure, but not necessarily greater than the risk of untreated autoimmune disease—runaway inflammation is linked to heart problems, for example, and untreated Crohn's/colitis massively increases your risk of colorectal cancer. I mainly mention this because I was terrified of starting Humira when I got diagnosed with AS years ago—those black box warnings are legit scary. But I had to weigh the risk of maybe developing a rare side effect versus the guarantee of my spine permanently fusing and my immune system burning everything else to the ground out of spite, and ultimately went for the Humira. And I'm glad I did, because my quality of life has improved massively. Which is all to say that I hope your sibling's doing okay and found a treatment that works for them. It's scary out here, but there's hope, I promise.
- alanmoraes 3y ago
  Thank you for your testimonial on Humira.
- ekianjo 3y ago
  Problem with biologics is that you can never really know how long you can take them. Some people who take them for years all of a sudden stop tolerating them and have to drop out of using them
  - ekianjo 3y ago

ankit219 3y ago

I have AS. Diagnosed or rather verified on the sole basis of presence of HLAB27 antigen. Luckily it's peripheral, but it was detected pretty late in the cycle. The doctor was super helpful. I realize the how this is an evolving science when I shared the reports with a friend who studied medicine for 8 years, and her reaction was total surprise about the tests, medicines, and injections I was given. Only thing that has worked so far is Adalipca injections and they too need to be taken atleast once every year (two at a time). (Edit: The doctor told me pointblank that we dont know what could have triggered it) I read somewhere that a startup was working on controlling Immune system response via some brain waves. I have never rooted so strong for any startup as I am rooting for them.