Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group What do you feel I really have?

I was tested for Lyme I believe fairly close to the time I was diagnosed with MS around 1999. The testing was done at my doctor's office. Can't remember what the type of test it was but know it was notorious for testing negative.

The gut is EVERYTHING!!!

I have met some people that have no illnesses or illnesses diagnosed as something other that AS, but all those people report hip and sacrum stiffness and pain.

I suspect that doctors too quickly associate sacral pain wit AS. I tend to agree that if one has AS then they likely have sacral pain but that is due to the likely source of immune system stimulation from a microbial intolerance. The gut is a more likely source than the sinuses and lungs, hence the sacrum and lumbar areas are more ljkely to be inflamed in comparison to the cervical and thoracic spine.

As Dragonslayer says, you most certainly have Polypharmacy. Most, if not all pharmaceuticals, will in the long-term damage the gut and microbiome so that your immune system is unfriendly to your own tissue and also to the microbes that you we're once friends with. Your immune system is tired and confused. It needs a break from pills, food irritants, etc. Concentrate on getting all the toxins out of your environment and body while healing the gut. Getting the toxins out can take months to years. After all, it's probably taken a couple of decades or more for them to build up.

So, sacrum and general body stiffness in the mornings that are reduced by exercise defiantly is associated with AS but it's associated with Lyme and many other illnesses that produce toxic buildup in the body while at rest. Get heart pounding, muscle straining, tissue stretching and sweat producing exercise to varying degrees everyday to keep toxins on the excretion paths. Don't let them accumulate and cause pain and damage.

So, again, polypharmacy can cause gut dysbosis and hence psoriasis. Also, polypharmacy can open the gut lining to infection and hence IBS.

Was your Chron's diagnosed by both biopsay and antibody tests? There are experiments that show Chron's can be put into remission by eliminating grains and treating infections. Also, there is speculation that Chron's might be cured by eliminating microbes that the host's (you) immune system is disrupted by.

For true AS cases that are developing the definitive "bamboo spine" I hypothesize that the protein misfolding occring on ribosomes in the edoplasmic reticulum is happening due to the presence of a compound that disrupts the folding, and that that compound is produced by an unknown intracellular pathogen. That pathogen receives signals from the gut and those signals can be amplified by a leaky gut and the development of mast cell proliferation.

For you, 20 years ago Lyme was unreliabally excluded and through exclusion MS was arrived at. You do not even have the definitive indicator of AS which is the bamboo spine. You have spinal suggestions of sponylyoparthy but spinal inflammation is common in many infections that can have low virulence and not cause any accute symptoms that will get you into emergency where doctors will run every test known to find that noxious pathogen in you. Sadly, since the pathogen is only chronic but not life threatening doctors will not take the notion of an infection seriously and instead fall back on their out moded training regarding causes of chronic illness - that it is your genetics.

Some diseases are inherited, but hardly through genetics, they are picked up from the mother while in the womb, during birth and from living in contact with the family. The microbes get passed down the generations. Maybe you petted just one too many deer in your back yard!

Kellybells said that a good response to NSD indicates Spondy. That's a good possibility. But a good response to NSD can also be a good indicator of many other diseases especially Lyme.

It is time for you to make the efforts to get second and third teats and opinions regarding Lyme. Don't let the free government medical system dictate you quality of life.

A Bamboo Spine only occurs in advanced A.S. and is unlikely to even show up on an X ray till the patient has suffered for some time.

The fact that a governments medical system is free does not mean it is a second rate system and anyway there is no such thing as a free medical system as they all have to be paid for if only by general taxation.

Hi and thank you for your reply. I have never been diagnosed with Chrons. I was tested for it. When I eat no grain I feel much better.

Thank you Frederick for your words of clarity. I was taking my chances with my open ended question so I kinda asked for it. I know it takes years for the bamboo spine to show and I also know it takes years for AS to progress. I am only at the beginning of my dance with it if that 'is' what I have. I am HLA-B27 positive which again does not mean I have it. It just means I have a slightly higher chance than others of getting it.

Frederick:

Thank you for the correction. The first very young rheumatologist I saw told me that "most AS patients he sees have their spine totally fuse within five years." He claimed to see a thousand patients a day with his four colleagues. I took his education and expertise for granted and allowed him to brainwash me. He obviously is very prone to exaggerate. He led me to believe that "true" AS will form a bamboo spine in a short time. Now I am led to believe that it can take decades or never happen.

So I have been using "bamboo spine"/fusion as a necessary definition for AS and that all other complaints are just some kind of spondyloarthropathy or infection that is mimicking spondyloarthropathies.

Also, he emphatically told me that there is no association between AS and bacteria despite the current research (and old research) that is supporting the microbial cause and sustainment.

And still, I suspect that all spondyloarthropathies are driven by an underlying infection in the body that is driven by the gut.

And it seems that perhaps most chronic auto-immune diseases have the same pattern (a systemic infection driven by the gut).

Too many diseases -- MS, AS, FM, CFS, Lyme -- look alike in their unprogressed stages and so should be retested as technologies improve. That is why I said, "the definition of insanity to doing the same thing over and over and expecting different results." Going to the same GP over and over will not change their mind.

So I badger Magician to get other opinions without informing a doctor of past diagnosis as to not lead them into a simple agreement.

Twenty five year ago, after going to the same GP for a few years I accepted the diagnosis of fibromyalgia. I should have seen other doctors at that time instead of trusting his wisdom. But seeing different doctors given the state of knowledge then probably would have made no difference. And since then I have told doctors that I had that diagnosis and they simply accept it -- not much scientific skepticism or new questioning there! And man has my condition evolved!!

And as to the Canadian medical system... I have a friend in Canada whose wife has been in the medical administration field for decades. She says that the Canadian system is slow not due to a lack of doctors but is deliberately slow to keep costs down. Many Canadians like to say, "the cost is great but get in line and wait to die." No system is perfect.

The Institute of Neurology of Montreal did a trial with ten patients back in 2014 using Portable Neuromodulation Stimulator/PONS, which should have concluded by 2017.

According to Montel Williams it reverses the neurodegeneration; it works for him.

It can be applied to more than MS.

https://www.youtube.com/watch?v=tsxLg2Z3_XU

I hope this helps