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Re: Occipital-atlas-axis joints fused or not
Alex_j01 #285038 07/31/22 08:24 PM
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Hi Alex!

Summer greetings! Hope you are able to be out a bit and enjoy the season.
How is everything going on your end?

Some good news here, my enlarged knuckles are not arthritis. The x ray showed "no significant degenerative changes." My rheumatologist recommended a review by a dermatologist as well to check if it is any skin condition (not psoriasis). I also did not see much red / inflamed color since I started eating more on AIP.

With that said, my CRP is stubbornly at 0.4 which I am convinced is because of not adhering more regularly to strict AIP/Paleo. My diet the last 10 months has been low-starch and no-gluten Mediterranean diet (including dairy, alcohol, legumes). I actually tested to go cold turkey to AIP approximately 96 hrs before the most recent blood draw, as I read that the microbiome turnaround time is around 72 hrs and the CRP half life time 19 hrs. If the CRP elevation would just be due to a microbiome producing inflammatory compounds, the CRP should have dropped with the AIP switch.

So likely the CRP elevation is caused by something else - maybe "leaky gut"? In which case I probably need at least a few weeks or maybe a month to heal it on AIP.
After a trip to Europe in August, I am planning to go back on AIP this fall and heal myself back to 0.1 CRP and then see how much I can venture outside of AIP while keeping my bimonthly inflammation tests at bay.

Since I restarted Boswellia supplementation I also notice subtle improvements in joint movement and low pain. Especially more flexibility.
Also generally speaking the more I move, and the healthier the food, the better I feel.

Thanks,
Ps_Spa


Background: 32 yr old male
Symptoms: Ps (scalp, elbows, knees) since 2000; PsSpa (neck, sacroiliac joint) since 2015
Dx: Osteoarthritis Aug, 2017; PsSpa Nov, 2018
Treatment: Meloxicam, Nov 2018-Jan 2019; Naproxen, Jan 2019-Jun 2019; Humira, Jun 2019-Present
Re: Occipital-atlas-axis joints fused or not
Alex_j01 #285043 08/11/22 05:41 PM
Joined: Dec 2021
Posts: 29
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Hi PsSpa

Still fighting here with ups and downs. Working part time (4hours per day) which is good because during that time my mind does not think in the desease. I will have the follow up appointment in September but if the blood work is ok don’t think the doctor will change anything.
After 6 months on enbrel/diet I can said that definitely there are improvements and I noticed what you mentioned that I am smiling more and there are days that I can enjoy without thinking in the disease too much, still not a whole day but at least partially is good.
The diet is still the same just added sometimes goat cheese, oranges, grapes and removed the coconut oil because I am stable at 140 pounds.
Neck mobility stable around 40 degrees and lot of crunch but allowing me doing more things during the day.
I think the inflammation is under control and the problems I am dealing is previous damages that maybe it can heal with time. Anxiety, brain fog and sleep is also better but still bothering.
If I continue getting better slowly during the next 6 months I think I can reach a good point. Let’s see how it goes.

Happy to see you have everything under control on your side there is hope for me :-)

Thanks
Alex

Last edited by Alex_j01; 08/11/22 11:20 PM.

41 yo, main problem stiffness and pain in the neck since 33 and always be treated as osteoarthritis till reach 41 years old
Hla-b27 negative, CRP y ESR always normal till 41 yo and 6 months when spike, sulfasalazina and indomethacin from July 2021 till December 2022, enbrel from February 2022, nsd and autoinmune paleo diet from January 2022
Re: Occipital-atlas-axis joints fused or not
Alex_j01 #285058 12/17/22 09:24 PM
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Hi Alex!

Season's Greetings! Hope you are doing okay without too many downs and still seeing improvements in your wellbeing and quality of life.

Here is an update from me: During my bimonthly CRP/ESR testing before Thanksgiving, my CRP was still stubbornly at 0.4 mg/dL even though I was mostly eating AIP during the weeks with some minor cheats over the weekends (like coffee, soymilk, nuts, chocolate, etc..)

So on Black Friday, I purchased an "InsideTracker" test and went on a 2-week 22:2 / 20:4 fast on strict low-starch AIP the 2-4 hrs per day I was eating. The bloodmarkers ater the 2 weeks: My CRP finally came down to 0.11 mg/dL!!!! This is my first result less than 0.4 mg/dL in over 14-15 months. Just wanted to share this uplifting news, that it is possible to change the course of things even after a long time.

It is mind-boggling what the impact of slight diet adjustments are. During Christmas/New Year's I will cheat with the diet a little again but then back on AIP and fasting.

The InsideTracker test also gave me some more valuable insights:

- My SHBG was too high and my testosterone/free testosterone on the low end of "optimal." Too high SHBG is associated with various diseases like cardiovascular, cancer, etc. In my case likely because testosterone decreases during fasting so the hormone carriers (SHBG) build up. So I will try adjusting fasting periods and caloric restrictions to see if I can avoid overdoing fasting when I do it.

- My LDL was too high pushing up my cholesterol overall. I had this issue in the past on the AIP & Paleo, it is associated with the increased use of coconut products, mainly coconut flour as I use that for starch-free or low-starch baking. Also consider this: Coconut oil has 70% more saturated fat per gram as compared to cow butter and coconut cream has 2.5 times the saturated fat per gram as compared to cow cream. So, moving forward, I will cut out coconut oil and coconut cream completely except for very rare usage. Coconut oil is easy to substitute for olive oil but coconut cream does not have any substitute on AIP, so I just have to avoid it, so I can still use coconut flour sometimes.

Also my weight is normal now at about 132 lbs. I could loose a 5-6 lbs overall without issue but not much more.
According to the InsideTracker test I am 1 year younger than my chronological age... LOL! Oh well, it is just a number but a fun factoid. If I improve the SHBG and LDL issues, maybe could improve aging a little further. Interestinly my immunity scores were pretty good, especially neutrophils and lymphocytes, so my immune system seems pretty healthy. Also blood sugar, iron values, etc. were good which I attribute to the nutritious food on AIP. I will continue to track this but mainly to ensure my overall health is good to minimize the risk of any comorbidities as I really don't want other diseases on top of PsA/AS.

How is everything on your end?

Take care,
PsSpa

Last edited by PsSpa_M_1989; 12/18/22 01:37 AM.

Background: 32 yr old male
Symptoms: Ps (scalp, elbows, knees) since 2000; PsSpa (neck, sacroiliac joint) since 2015
Dx: Osteoarthritis Aug, 2017; PsSpa Nov, 2018
Treatment: Meloxicam, Nov 2018-Jan 2019; Naproxen, Jan 2019-Jun 2019; Humira, Jun 2019-Present
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