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ankylosing spondylitis?

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Posted 9/19/2017 2:13 PM (GMT 0)
Hello again all,

I went to the rheumatologist today and all blood work was normal. The doctor ordered an x-ray of my spine and pelvis and ordered nephelometry blood work (I had never heard of this before today my understanding is it checks for antibodies?).

When I asked him what he was checking for he said ankyolosing spondylitis. I'm just wondering if anyone here had this as a suspected diagnosis only to later find out they had Lyme.

I don't really think this is my issue as my presenting symptom 9 months ago was balance issues/dizziness. When I asked the rheumatologist if this issue could cause those he said its rare but possible :/. Furthermore my back pain is really one of my least troubling symptoms, its not bad everyday like my leg pain knee pain and balance problems.He prescribed diclofenac 50mg 2/day for pain until I see him again next week (unfortunately nothing to help my balance )

I will keep up with these appointments for now to try and rule out other conditions given the negative ELISA for Lyme but my symptoms still seem to line up more with Lyme than rheumatic diseases.

I'm looking into the possibility of having a doctor here sign off on igenex testing but it isn't looking super feasible. Still treating with andrographis, cats claw, and Japanese knotweed in case it is Lyme. So far symptoms are still worsening as the days go by (I finished the 1 month of doxycycline last week and am around 2 weeks into the herbs, I'm at 20 drops each for those 3/day).

Per suggestions users made in my last post I've added a few things for detox. Still dry skin brushing, lemon water 2x/day, multivitamin, vitamin b complex, curcumin, added activated charcoal before bed and bought a supplement containing MSM, Glucosamine, Calcium,vitamin d3, and collagen protein type II.

Really hoping for either some answers from the rheumatologist or for some relief with the lyme treatment soon!
Posted 9/19/2017 3:35 PM (GMT 0)
/en.wikipedia.org/wiki/Ankylosing_spondylitis


"Although the cause of ankylosing spondylitis is unknown, it is believed to involve a combination of genetic and environmental factors. More than 90% of those affected have a specific human leukocyte antigen known as the HLA-B27 antigen. The underlying mechanism is believed to be autoimmune or autoinflammatory.[6] Diagnosis is typically based on the symptoms with support from medical imaging and blood tests. AS is a type of seronegative spondyloarthropathy, meaning that tests show no presence of rheumatoid factor (RF) antibodies. It is also within a broader category known as axial spondyloarthritis.[7]"

I was tested for it once. Dr said he was looking for some type of marker. Must have been that HLA-B27 listed in the wiki page. If it is autoimmune, they have NOT identified a specific antibody associated with it yet.

edit: I dont know whay thats in big bold print, not like that in the "edit screen"

Post Edited (astroman) : 9/19/2017 10:38:30 AM (GMT-6)

Posted 9/19/2017 4:25 PM (GMT 0)
Astroman,

if you don't mind were you tested before finding out that you had Lyme or were you tested after already knowing you had Lyme? Also I wonder what exactly this doctor is looking into with this nephelometry test.

I'm asking because if others here had doctors suspect this first and find out Lyme was the cause later that might help me put together this puzzle a little more.

If nothing comes up in this nephelometry bloodwork or the x-ray to point to something else maybe I will try and get a western blot for Lyme here (haven't done it yet because I have to travel to have it done by request and also have to have someone translate for me to make the appointment. I also don't know if this center that will do it is a reputable place or not. They didn't to my knowledge do a western blot at all yet, only the ELISA which was negative for Lyme, the CDC decided how to go about testing).
Posted 9/19/2017 4:57 PM (GMT 0)
I was tested for AS in the 90's before LLMDs or even the term Chronic lyme did not exist yet.

Many people with back or pelvis pain are tested for AS, since thats what its symptom is. Obviously there are many cause of back/pelvis pain.

I'd say at least 25% of people here are Dx'ed with something else before lyme from conventional medicine. Especially chronic lymies- since the BB bacteria runs from your immune system into low blood flow areas. You immune cells are in your blood. Parts of our bodies have very low blood in them- thats home for BB bacteria.

So most blood tests are useless the longer you have this. This is where lyme marker tests like cd57, c4a come in handy. Or any T cell testing, like iSpot or T cell level itself. If all are wacked and you have lyme symptoms then its pretty clear.

A bullseye back then was even ignored by some Drs back then, I also had a month long oval bullseye 30 years ago with lots of "tick history" as a backwoods/ wilderness outdoors person.

Along with the rest of my body, I did specific back workouts, muscle knot release ect, and back got better. Before and during abx treatment I wasnt to successful.

Post Edited (astroman) : 9/19/2017 5:31:43 PM (GMT-6)

Posted 9/19/2017 6:45 PM (GMT 0)
Did imaging show anything on your spine that is consistent with the AS?

and is your lower back, stiff...sore?


I believe that was one of the autoimmune blood tests my Dr. had me do. I think it's a specific gene?
Posted 9/19/2017 9:19 PM (GMT 0)
Human leukocyte antigen known as the HLA-B27.

There are no antibodies known for AS yet.
Posted 9/19/2017 10:45 PM (GMT 0)
Im almost positive they have concluded now that the cause of AS is klebsiella bacteria in your gut. I was told i had it, had all the spine pain and whatnot- removed starch from my diet (i never eat sugar) and took olive leaf extract which is supposed to kill klebsiella and voila, few months later it was gone. Never returned.
That's if you actually have AS though, lyme can absolutely mimick it
Posted 9/20/2017 12:23 AM (GMT 0)

astroman said...
Human leukocyte antigen known as the HLA-B27.

There are no antibodies known for AS yet.

hmmm not sure I had that one done.

Maybe it was ruled out after I had imaging of my spine...can't remember.
Posted 9/20/2017 1:55 AM (GMT 0)
Thanks for all the responses everyone! 1000Daisies I'm very sorry to hear about your friend.

My back pain occasionally is in my lower back when it is it kind of feels like it radiates from the tailbone into my legs, but the pain isn't always in my lower back and the "radiating" feeling can be absent and I still have the knee/leg/ankle pain.

The back pain is really just all over the place and random, sometimes the middle of my back hurts, sometimes between my shoulder blade and spine, sometimes there is no back pain at all.It's also probably my most mild symptom. I occasionally even forget to bring it up at appointments. That isn't to say it isn't annoying when the back pain started about 4 or 5 months after my balance/dizziness symptoms started in December I started going to the chiropractor for the first time in my life.

I don't receive results from the x-ray and the new bloodwork until next Wednesday so I don't know if there's anything abnormal or not yet :/ more waiting.
Posted 9/20/2017 6:07 PM (GMT 0)
Hi c009j: I have something similar, inflammation and pain in foot, knee and in the back. No rheumatoidal antibodies detected, RF factor is normal, HLA-B27 positive. All other tests super normal, no issues detected. I treat lyme and other stuff for 13 months now and the pain is still the same. Regarding rheumatologist don't expect that they will figure it out, they are completely lost, all the treatment they can offer is just reducing the symptoms, nothing more.
Posted 9/20/2017 7:27 PM (GMT 0)
Yellow Cat,

So sorry your pain is still the same 13 months in. With the positive HLA-B27 were you diagnosed with AS? I'm not sure the rheumatologist ran this test, I don't believe he did. Honestly though I'd be happy with some symptom relief at this point, each day seems to be harder than the last. Do you have any issues with your balance? That's probably my most troubling symptom followed closely by the leg, knee, and ankle pain. If I didn't have waves of dizziness and trouble standing still I think the pain would be more manageable (they kind of feed into each other, my pain will be maybe a little bit less than usual one minute, then I get an extra bad wave of dizziness and clench my muscles to keep my balance which reignites the pain. Or, I'll be in too much pain to keep putting weight on a leg so I'll shift my weight and then get an extra bad wave of dizziness)

Also I do want to reiterate I don't necessarily think this is my problem, Lyme seems to fit my symptoms better, but trying to collect as much information as I can!

Post Edited (c009j) : 9/20/2017 1:36:29 PM (GMT-6)

Posted 9/20/2017 8:24 PM (GMT 0)
They say it's reactive joint inflammation, I think because I had ureaplasma infection and many joints are affected. In the end it's just a classification that doesn't change anything.
Do you take any meds to lower the inflammation?
I'm starting LDN now, there is some chance it may help.
Posted 9/21/2017 6:27 AM (GMT 0)
My husband has had AS for 30 years. A person can have the gene but never get the disease. It is genetic and mostly affects men. It usually starts in the twenties and is extremely painful. My lyme pain doesn't compare to what he experienced. He didn't have dizziness or balance issues. He does however get a severe eye infection at times. The pain goes away once the body quits attacking the fluid in his spine. He is now pain free but he is froze from his tail bone to his neck. He will never regain his flexibility. An anti-inflammatory diet can slow the progression and help ease the pain but it will not stop it.

I hope you find answers soon!
Posted 9/21/2017 6:44 AM (GMT 0)
Amy - sorry that your husband has/had the AS. What stopped his - did he take steroids?
Posted 9/21/2017 7:02 AM (GMT 0)
He will always have it but once the vertebrae in his spine fuses as a result of his body fighting the spinal fluid the pain goes away. He took very strong prescription pain killers for about 20 years until the fusing stopped. Sometimes it progresses to the rib cage which can be extremely dangerous. Other times it forces the man's head forward permanently. My husband was lucky in that sense. The only steroid they treat him with is a shot in his eye when he gets the eye infection.
Posted 9/21/2017 4:47 PM (GMT 0)
Amy- So sorry about your husband but it's good that his pain is gone. I do fit the statistic (26y/o man) but my other symptoms just don't seem to align with it. I do have a slight vision problem whereas my left eye feels "weaker" (the only way I can think to describe it) and is slightly blurred occasionally during the day but I haven't experienced anything like the eye issues I've seen described in AS symptoms.

As far as balance issues I pointed out to the rheumatolgist right away that this was my presenting symptom in December and he said it's rare, but possible for AS to cause autoimmune inner ear disease. Have you heard of this at all during the course of your husband's treatment? I'm also skeptical of that as 2 ENTs have basically cleared me on it being an inner ear issue (even though I went maybe 5 months believing vestibular neuritis to be the cause because that's the only thing the 3 neurologists I've seen said might be the issue, the first neurologist I saw did also tell me at my last visit that he doesn't think it has to do with my inner ear now either) due to not having any nystagmus at all.

Yellowcat- The main thing I take for inflammation is lots and lots of ibuprofen when I'm not able to just stay in bed. I take about 800mg every 2 hours or so when I'm at work on bad days. It helps slightly, but usually only if I take a minimum of 800mg. I also have/had been using curcumin (taken with black pepper) initially 500mg TID but then upped to 1000mg TID the last 2 weeks. I just ran out of that and don't know if I will buy more or not, I didn't notice any difference with it. The rheumotologist prescribed diclofenac 50mg BID, but I only took I think 4 of these. It helped minimally, less than ibuprofen, but more than curcumin alone. I am trying not to take it though because I've read it can increase blood pressure and my blood pressure already runs upper normal - prehypertension usually (132/62 at the PCP yesterday). I think I'm seeing a very mild benefit from the MSM/Glucosamine/Collagen supplement I'm taking as of Monday. I'm definitely open to suggestions though!

I'm a little blindly optimistic that my issue is maybe an easy fix in the spine/back in general.I don't know if this exists, but maybe a herniated disc that for some reason happens to be easily surgically fixed in this case (and yes I know this wouldn't show on an x-ray). Like many of you I really just want anything to make me feel better again! I have a birthday coming up and also a few public holidays and it would be wonderful to be able to enjoy them. I know this probably won't happen though :/ .

And also rather than start a new thread about it (I know this is off-topic) quick question for anyone reading this who takes buhner protocol herbs, how much is the max dose for andro/JK/and CC in a tincture [mine are from woodland essence]. I don't really understand the ratios to figure out exact dosing so have been considering the suggested dosage on the back of the bottles to be the maximum dose. I'm at JK 20drops TID, CC 20 drops TID, and I just upped andro to 25drops TID yesterday. I'm almost to the halfway point on my JK bottle so will be placing another order soon, will probably add sida acuta and eleuthero when I do order.
Posted 9/21/2017 5:31 PM (GMT 0)
Here is a link to Buhner's website (that he apparently isn't updating anymore)

It shows the recommended dosages for different herbs. Although, at least one of his herbalists says you can even go higher.

buhnerhealinglyme.com

For reference: 1/4 tsp = 25-30 drops = 1 dropperful.

For JK:
Tincture: ¼ – 1 tsp 3-6x daily,

So you can take up to 1 tsp 6X daily of JK.


For CC:
Tincture: ¼ – ½ tsp 3x daily,
Posted 9/21/2017 5:47 PM (GMT 0)
Thanks!

Do you know what to do for the andro though?

I've seen here http://buhnerhealinglyme.com/the-protocols/#LD the dosages for JK and CC as tincture ,but the dosage for andro is only listed as a capsule.
Posted 9/21/2017 7:37 PM (GMT 0)
c009j - I take 7,5mg of Meloxicam and 1g of Sulfasalazine two times a day. You know all these drugs are nothing good to the body but it's doing magic in terms of pain reduction. I took me many months of experimenting with my rheumatologist to find proper dose. The things you could research:
- if your pain is autoimmune LDN may help http://www.lowdosenaltrexone.org/ldn_and_ai.htm. If your doctor doesn't know about it and will not give you prescription it's possible to buy it on cheap in internet shops. I just started using it, will see if it helps.
- there is strong connection between autoimmune and heavy metal toxicity, if you are interested I can give you more info how to test and chelate on your own
- did you see a chiropractor? they might be very helpful in spine issues
- there will be arthritis summit soon http://thearthritissummit.com/ arthritis is not exactly our problem but who knows, maybe we could learn something important there

Post Edited (Yellow Cat) : 9/21/2017 1:41:03 PM (GMT-6)

Posted 9/21/2017 7:55 PM (GMT 0)

c009j said...
Thanks!

Do you know what to do for the andro though?

I've seen here http://buhnerhealinglyme.com/the-protocols/#LD the dosages for JK and CC as tincture ,but the dosage for andro is only listed as a capsule.

I would just start low and increase - it should be fine to go to 1/4 tsp 3X daily.

After awhile on that...I think you could still increase it some.

Have you thought about having an appt. with an herbalist? One that Buhner recommends?
They do phone appt.s
Posted 9/22/2017 3:23 PM (GMT 0)
Thanks for the info Yellowcat and Girlie!

Yellowcat- I started seeing a chiropractor once a month about 4-5 months into developing symptoms (when symptoms progressed from just balance issues/dizziness to pain in my legs and back). I have increased to about once every 3 weeks or so now. It is helpful, but I'm hitting a plateau. It used to help me for about a full month, now it only helps for a few days and not nearly as much as it used to. The chiro did say my back is all messed up though (they blamed it on too much sitting, cold water, and juice... there is a big superstition here in Taiwan about cold drinks causing all kinds of ailments).

I haven't heard about meloxicam or sulfasalazine, I'll do some research on them!

As far as LDN I would be hesitant to take it myself. When I worked in mental health I had clients on naltrexone and they seemed to get some side effects (of course they weren't on low dose).

Girlie- Thanks for the info. I hadn't considered consulting with an herbalist because I didn't realize phone appointments were a possibility! I'll look into it.
Posted 9/22/2017 5:01 PM (GMT 0)
LDN is very safe, I would say much safer than any other drug we take to stop inflammation and it might be very helpful, just look at the list https://www.ldnresearchtrust.org/conditions
I just found good forum about it http://ldn.proboards.com/
Posted 9/24/2017 6:02 PM (GMT 0)
More about mercury toxicity: http://noamalgam.com/#diseases
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