Topic: just exactly what is ankloysing spondylitis??
randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
i've been diagnosed with this but am not exactly sure what it is? it's just arthritis in the spine right?
i am walking a mile every day but can barely make it back to the car. my hips just feel like the muscles and joints are made of glass and my lower back really hurts.
nothing i can do but man it hurts.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I would not call it "just arthritis of the spine" as it can quite serious and debilitating. But it does not have to become so - or there can be things to help if the CAUSE is addressed along with proper support.
I have a friend who has a son with this and his doctors have just so dropped the ball in his case. You have a choice though as to if you will sit there and take just the conventional medical advice or look outside of the regular doc in the box training about this.
There are things that can help.
How were you diagnosed?
Did they search for an HLA-B27 marker?
Borrelia, Cpn and other chronic stealth infections can CAUSE this. So don't stop with just regular doctors (or even specialists) if they are not LL. A good LLMD can direct you to appropriate other experts, though, if needed.
Have you been assessed for chronic chlamydia pneumonia? It's another chronic stealth infection with a similar treatment protocol. It's been connected to Ankylosing spondylitis, too.
I've read of adequate treatment for chronic stealth infections totally reversing this. Totally - and, in other cases, at least measureable improvement along with a well rounded protocol that addresses INFECTION & CELL SUPPORT.
Where most doctors or advocacy groups drop the ball for AS is they don't admit to chronic stealth infections. They say an infection can trigger it but they do not aggressively address the infection connection.
I many not agree with everything here yet it's a start to the basics (just not all the causes or need for treatment that addresses the root causes):
Ankylosing spondylitis (pronounced ank-kih-low-sing spon-dill-eye-tiss), or AS, is a form of arthritis that primarily affects the spine, although other joints can become involved. It causes inflammation . . . .
. . . Testing positive for the HLA-B27 marker . . .
. . . It is important to note, however, that you do not have to be HLA-B27 positive to have AS. Also, a majority of the people with this marker never contract ankylosing spondylitis.
Scientists suspect that other genes, along with a triggering environmental factor, such as a bacterial infection, are needed to trigger AS in susceptible people . . . .
. . . it is important to see your rheumatologist once a year in order to detect and treat any underlying complications . . . . (end excerpts)
---
Are they kidding? "See your rheumatologist once a year in order to detect and treat any underlying complications" !!! ?? !!
What the hell kind of medical care for such a painful and debilitating condition is that?
That's why I say you can do that - or you can seek a doctor who knows much more about all this, starting with a good LLMD or someone they suggest to assess ALL possible chronic stealth infections and actally do something about them.
Along with specific support methods.
-------------------------
Google: Ankylosing spondylitis, borrelia -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- It's hard to hear that you continue "walking a mile every day but can barely make it back to the car" (end quote)
I'm so sorry that somehow the ubiquitous message of "no pain, no gain" has blunted our own body's wisdom. If it hurts that much to walk, walking is not a good thing to inflict upon your body. At least, not the way it's happening now.
Maybe water walking in a pool - other ways to move are much easier for someone with this situation. Tai chi, Qi Gong, Pilates, Yoga . . . the right styles with the right instructors.
Please listen to your body when it tells you to stop things that are hurting it more.
Massage would be better than walking, too. It can help move tissue and waste and alleviate some of the muscle tightness, allowing you to enjoy other movement that would be better designed for this condition. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Sorry if my "tone" of frustration comes through to you. It's aimed at the problem and I've just seen too many given these kinds of diagnoses and then left to suffer. In some cases, the Rx prescribed have made things worse.
I know it's hard to hear yet another diagnosis. The medical profession has failed in so many ways. Don't let them continue to fail you. I've seen too many suffer those consequences.
Good luck with your research on your next step for addressing the underlying causes. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
yeah i understand. i've never thought much about it except to think 'oh, it's arthritis" and then the doctor says "you're getting old, all people have this", so you just think ok.
especially when he says loose weight, exercise, yada yada.
it was on mri reports and ct scans of my back. oh way back i'd say at least five years or more. lower back.
and the doctor has never said anything more about it. just oh yeah, here it is.
it's so true that people should take a proactive role in their health, cause doctors for sure do not explain nor follow up with any additional information or therapy strategies.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
| IP: Logged |
posted
Randi.. It could be that you are referring to the spondylosis* of the spine. Darn, now I'll have to go find my MRI report.
There's a difference between AS and what you saw on your report. (I think)
*gotta look that up
The reason I say it's different is that my reports say the same thing. If you actually have (or I have) AS, then we would be referred to a rheumatologist.
My rheumy was supposed to double check my X-rays for this but our signals got crossed and I gave up. My cousin has AS.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
| IP: Logged |
randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
hmmm you may have something there. i've been looking for those reports but they are in our tax file boxes and stacked up in the office.
so spondylitic changes are not as huh? also i remember something about calcifications or something.
crap, i've got to find those.
but i do know fer sure that arthritis runs in my family. mom had osteo and my sister is on chemo for ra. it's in her hips knees and arms now. she suffers a great deal and does go to specialists alot. i never have.
i'll see if i can find those.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
| IP: Logged |
posted
Part of my report says "Multi-level chronic appearing degenerative spondylosis of the cervical spine" ...
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Well, I certainly hope the diagnoses could be "lighter" yet there are multiple causes for any such changes. I just don't think doctors look to all the things that CAUSE such changes or those actions that can turn it around, or help.
"Running in the family" is also not always what we think, at all. So often, that can be environment factors (chemicals, smoke, heavy metals), including dietary or life-style influences, nutrients or deficiency in, certain infectious agents, etc.
As many with lyme are deficient in magnesium, that would make sense that bones are affected. Magnesium deficiency can cause all kinds of bone loss and abnormalities. And where magnesium is deficient, other minerals are likely out of balance. And that can cause all kinds of trouble, too.
But, if the bottom line is also that infections affect bone, it's vital to keep an eye on the major cause while supporting the adjunct influences.
Beyond the infection attention and mineral importance, key vitamins missing can blast our bones, in the very real sense of the term.
Vitamin K2 is vital.
CELIAC or other gluten issues, GMO foods, "Leaky Gut" - lack of good bacteria and lack of very specific enzymes - can each/all also cause nutrient deficiencies that can destroy bones, too.
It may be best to see a LL ND for your best all around assessment of the full picture and the best plan to be proactive. -
[ 04-17-2013, 02:29 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- As for exercise, hard exercise may not work for everyone.
Last night, PBS has a fabulous program from the UK, Michael Mosley (I think) . . . and all about exercise.
Just a few minutes of a certain type can be so much better for some. Still, though just being up and about is good for all but the stress on hard exercise is not proving good science for all bodies. It was amazing to see this.
I'll see if I can find a link but I have to rest now for a while. In the meantime, go to PBS main site and see what they ran last night.
Pretty sure this was across the whole US. I think it was 11 pm on the West Cost.
Search: Mosley, exercise, PBS -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- If the gut does not work well to take in nutrients, our bones will be affected. Not sure he'll speak to that but, still, looks very good:
Tonight on my PBS station, check local listing:
Guts With Michael Mosley
Medical imagery is used to take viewers on a remarkable journey through the digestive system. -
[ 04-17-2013, 05:45 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
posted
My father inlaw has AS and its not :just arthritis". basically its when you spine fuses together.
My FIL can not look up or to the right at all and can only look to the left a tiny bt because his spine is fused together so there is no movement. he also leans severely to one side because of the way it fused lower on his spine
Posts: 574 | From Out there somewhere | Registered: Jul 2010
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic