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New Here, in search of advice #283376 07/16/19 04:52 PM
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tlp5224 Offline OP
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Hi all,

I am a 21 year old male, in the process of being diagnosed with AS or something similar in nature, AS seems to check all the boxes. (5MRI, bloodtests, emg, x-ray) however i am hla-b27 neg which is where the doctors seem to be getting stuck. I lived a very active lifestyle, baseball, hunting, fishing,golf, and AFROTC. In late October my symptoms began but came on very strange. Started with LBP which turned into a limp within a week which turned into immobility. i was experiencing sciatica and muscle spasms for 2 weeks and could hardly get out of bed. The spasms seemed to stop by late November and i had to used crutches for a month or so. Then my shoulder began hurting in early January(still present) and now i have some jaw pain for the last month. it seems to have gotten somewhat better but i have my good days and bad days. I walk with a noticeable limp and have lots of pain in the buttocks. I do not have a Rheumy as of yet and am definitely looking for advice. It seems like even minor injurys don't heal and no reason for them to start. Has anyone had similar symptoms? if so what did you do for relief. It feels like my whole life has been flipped upside down.

The last mri of my sacroiliac region revealed that sacroititis has gotten much worse since January, and i do not want permanent damage. I am so limited by this and really need some help. Thank you all!


hla-b27 neg, awaiting definite diagnosis, in search of great rheumy in Rochester,NY.
Re: New Here, in search of advice [Re: tlp5224] #283379 07/16/19 05:14 PM
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Has anyone mentioned "reactive arthritis" to you?

As for good rheumies, SAA maintains a directory of qualified doctors, available here: https://www.spondylitis.org/Rheumatologist-Directory

Re: New Here, in search of advice [Re: Winston] #283381 07/16/19 05:26 PM
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tlp5224 Offline OP
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Thank you! Reactive arthritis has been mentioned but very briefly. Do you think that's worth investigating?


hla-b27 neg, awaiting definite diagnosis, in search of great rheumy in Rochester,NY.
Re: New Here, in search of advice [Re: tlp5224] #283382 07/16/19 05:54 PM
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Tacitus Offline
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Hello, tip5224:

The description of your symptom progression is very familiar to most young men with early stage AS, which is caused by a reactive arthritis. The serological B27 test commonly employed is inexpensive and very inaccurate; little better than a coin toss of avoiding a false negative result. Two methods that can be believed: Fc and ELISA.

The approach when B27 is negative is usually "benign neglect," or just waiting for definitive signs of a disease (like FUSED SIJ).

There are accepted approaches that can DELAY permanent skeletal damage a couple of years--maybe the early use of one of the biologic drugs.

However, I believe that the most effective method for long-term treatment that can avoid the damage, are the dietary changes revealed in Carol Sinclair's book "The IBS Low-Starch Diet."

I think that June Stein was able to avoid the SIJ fusion by doing yoga.

My own experience is with later-stage AS, yet was still getting iritis and kidney stones (AS does not "burn out"), so changing my diet plus my own antibiotic protocol totally eliminated these symptoms and helped me avoid myriad end-stage complications, albeit not two surgeries due to the many years of inappropriate treatments (NSAIDs greatly accelerated my disease). I discovered fasting quite by accident, but a proper water-only fast for 4-6 days will usually convince the most skeptical of the food connection with AS; I had the advantage of documentation revealing that this particular wheel has been discovered over and over again many times throughout history.

Good Luck with whatever You decide,

HEALTH,
John


Nota Bene: I am not a medical doctor, and my views do not represent the opinions of the SAA
AS Resources
My Long, Boring AS Story
Professor Alan Ebringer Diet and AS

Re: New Here, in search of advice [Re: tlp5224] #283383 07/16/19 06:24 PM
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tlp5224 Offline OP
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Thank you for your advice, i will definitely look into the low starch diet! I have an appointment with my orthopedic doc tomorrow is there anything i should have him check for or mention to him that will be beneficial in your experience? I have been in pain for month and they don;t give me anything for the pain other than meloxicam which i stopped taking 4 months ago just ibuprofen since. I can't seem to find any relief.

I also fin myself involuntarily "fasting" where i just don't seem to have much of an appetite.


hla-b27 neg, awaiting definite diagnosis, in search of great rheumy in Rochester,NY.
Re: New Here, in search of advice [Re: tlp5224] #283388 07/16/19 11:33 PM
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You need to see a rheumatologist ASAP. Ask your ortho for a referral. If the rheumatologist determines that your sacroiliitis is being caused by AS, you need to discuss biologic medications with him/her. Biologics like Humira, Enbrel, Remicade, Simponi, etc can help slow the progression of AS.


Ginny - 58 year old female
Dx with USpA in March 2013; changed to AS in July 2015
Iritis and Scleritis, both currently in remission
unicompartmental knee replacements: right-June 2014, left-Aug 2018
MTX, Humira, Cyclobenzaprine, plus Celebrex as needed
Supplements: Folic Acid, Vitamin A, Vitamin D, Calcium, Fish Oil, Culturelle probiotic, Melatonin (as needed)
Re: New Here, in search of advice [Re: tlp5224] #283391 07/17/19 07:53 PM
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Tacitus Offline
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Hello, tip5224:

Meloxicam and ibuprofen are NSAIDs that can cause problems with digestive tract (and for that reason increase AS activity). I like the biologic drugs much better and since You do not yet have diagnosis it might be more difficult to have insurance cover one of these, however, depending upon the physician they might be willing to try one of these drugs to help determine the nature of Your illness.

The thing with AS is, best not to stop any valid "treatments" that could reduce or delay damage--I would throw everything at it possible, but there are certain drugs that I have had really bad experiences with, like NSAIDs that provided temporary relief but the cost in long-term damage was really not worth it.

So, I would try replacing NSAID drugs with borage seed oil and this is an herb that provides a substance called GLA. When I took 8g (that is eight capsules of the oil for a 180# guy) at night before retiring, I awoke in the morning with no morning stiffness and general pain greatly reduced. Later, I began taking EVOliveOil by the teaspoonful throughout the day and especially before meals. Again, this helps reduce the inflammation. Wheatgrass juice 4-6oz on an empty stomach also helped reduce the systemic inflammation. HOWEVER, nothing is as effective as fasting for 6 days (I have done up to 20 days with only great outcome) to take down most flares--up to 11 days when I had terrible hip involvement.

I hope that You get Yourself into remission soon and can avoid the SIJ fusion!

HEALTH,
John


Nota Bene: I am not a medical doctor, and my views do not represent the opinions of the SAA
AS Resources
My Long, Boring AS Story
Professor Alan Ebringer Diet and AS

Re: New Here, in search of advice [Re: Winston] #283392 07/17/19 08:14 PM
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has anyone used the directory recently for and RA?? https://www.spondylitis.org/Rheumatologist-Directory

I'm trying to find and RA doc south of Seattle/Bellevue. It's been a nightmare trying to find one and get in. I'm seeing Dr Kent Ta in Bellevue. he is great, but its 1.5 hour drive up just to get there.

any other resources out there to find a doc more local?

Re: New Here, in search of advice [Re: tlp5224] #283393 07/18/19 02:14 PM
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tlp5224 Offline OP
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Tacitus,

Thank you for everything you wrote. I will be making a shopping trip later today to be pick up suggested items. I also hate being on NSAIDS and now they just gave me a small pack of methylprednisolone. The methylprednisolone provides some relief but i don't seem to get anything out of any NSAID i have taken.

Currently i am waiting to make an appointment with a rheumatologist , and it looks like its going to be a while to get in. I still have a lot of life a head of me and don't want to be crippled by this for the rest of my life.

All of your input has helped me, and it helps to know that other people have made it through struggles i'm going through.


hla-b27 neg, awaiting definite diagnosis, in search of great rheumy in Rochester,NY.
Re: New Here, in search of advice [Re: Tacitus] #283697 11/03/19 10:50 AM
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achala Offline
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Originally Posted by Tacitus
Hello, tip5224:
So, I would try replacing NSAID drugs with borage seed oil and this is an herb that provides a substance called GLA. When I took 8g (that is eight capsules of the oil for a 180# guy) at night before retiring, I awoke in the morning with no morning stiffness and general pain greatly reduced.


Just adding a bit of my own research, since I purchased Borage seed oil recently and planning to use it in a combination with DHA/EPA (Omega 3) + vit D:
Patients should use borage oil certified free of toxic unsaturated pyrrolizidine alkaloids (UPAs). Consumption of 1-2 g of borage seed oil daily can result in an intake of toxic UPAs approaching 10 ug.
I think also patients with epileptic history, should be very careful as it can lower seizure threshold:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3724443/

Originally Posted by Tacitus

I think that June Stein was able to avoid the SIJ fusion by doing yoga.


I am still trying to understand the physics of this statement. Is it because of the yoga she went into remission (yes, I have her Rheumatologist letter in front of my eyes), and if so - how? Or she avoided fusion by doing yoga, and please elaborate how is this possible? Chemical reaction in the body, soft tissue stretching, pulling? Because I understood the process to the following extent (in layman words): Step 1: Roumain Lesions (erosions), Step 2: body heals the lesions by building bridges.
many thanks in advance.

Last edited by achala; 11/03/19 10:57 AM.

diagnosed with AS April 2018, starting with cervical pain/stiffness; Aug 2018 enthesitis/bursitis left Achilles
diagnosed with AAU Nov 2017 (7 flares so far)
Eosinophilic Gastritis
Sulfasalazine 3g 08.2018-05.2019 (worked for AAU & peripheral)
Supplements:C/D, omega 3/Probiotic/ Mediterranean NSD/curcumin
swimming/yoga/pilates
Predonisone in case of another AAU flare
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