Quick Links
- My Autoimmune Rebuild Process in 2014
- Rebuilding with Humira and Rates of Inflammation
- Weight Fluctuations from 118lbs. to 150lbs.+
- Highlights with Photos (The Fun Stuff!)
2012 and 2013 were the most difficult years of my life (see my 2013 yearly review). 2014 was all about getting my life back together and rebuilding my autoimmune system. Before I begin, please watch this small clip from Forest Gump:
Like Lieutenant Dan in Forrest Gump, I was angry – angry at the doctors who would tell me to “take these pills” only to realize they were contributing to my condition. Angry that Chiropractors manipulated me too much (to this day I still cannot turn my neck prior to 2012). Angry at taking advice from the functional medicine doctors and holistic practitioners telling me they have the solution to my illness, take my money, and rarely ever follow-up. I was angry at God and the people who praised God as the ultimate healer only to be writhing in pain every night and never hear a word back from Him. And ultimately frustrated with the realization that the very medicine I wanted to get off in the beginning turns out to be the one thing I need to get my life back in order.
Then why did I suggest you watch a video clip of someone at peace? After fighting the “storm(s)” like Lieutenant Dan, I realized that we all have struggles and peace is determined by the way you perceive life. And for positive perception to begin, I had to let go of the expectation that to fix my autoimmune condition without medication. And rebuilding is the small wins you get like learning how to run the first time, being able to sit in a chair for more than 20 minutes or treading water (exercise) for that extra 10 seconds. It’s the people I met, the woman I fell in love with, and realizing who I am instead of trying to attain a status of what “you” perceive I should be. Letting go but not giving up is my new motto for 100 percent health.
My Steps on the Autoimmune Rebuild of 2014
While I let go and found new perceptions to life, I never stopped researching, experimenting and relearning. The best way I can describe my autoimmune rebuild is through this recent study from 39 experts in Autoimmunity. They concluded that most people develop autoimmune conditions from these major areas:
Repeatedly these experts suggested these specific tips on protecting your health and improving your immune system:
1. Clean up your diet by removing toxic and inflammatory foods.
My experience: Some of the inflammatory common foods I continue to avoid are processed foods (especially the ones I cannot pronounce or understand), breads / flours (the starches I tolerate are rice, potatoes and quinoa), soda and artificial sweetners. I eat low amounts of dairy, beans / legumes, alcohol, and tomato paste.
2. Eat a variety of organic whole foods.
My experience: If I could, I bought local. To do this I visited the farmer’s markets and talked to the farmers about what they grow and what pesticides they use. I now buy a wider range of non-USDA certified foods because the foods are still organic (or use organic practices) but aren’t USDA certified yet. This saved me money and helped me understand the local production of produce (i.e. what is best to buy each season).
3. Take care of your microbiome.
My experience: Your microbiome is basically the good and bad bacteria within your digestive system. By introducing probiotics, you increase the good bacteria which helps repair it. I continue taking water kefir on and off (currently doing it now) as it is easy to use and costs much less than buying probiotics.
4. Reduce your stress.
My experience: 2012 & 2013 I separated myself from almost anything that caused me stress as I could not cope with that along with my periods of depression and chronic pain. Since I was getting better by taking Humira (end of 2013), it allowed me the freedom to learn how to exercise (the 1st few months I had to relearn how to run again – it was quite a strange experience), socialize, and gain weight (at one point I weighed as little as 118lbs.), and not trying so hard to “fix” my chronic issues – all of which continues to keep my stress down. Throughout the months 90%+ of the symptoms went away and I developed a life again. This continued as long as I kept the mantra of letting go but not giving up.
5. Sleep.
My experience: I got to re-experience the amazing feeling of sleep without pain. If I continued to eat right (mostly by listening to my body and making sure my bowel movements / BM were in check), exercise and went to bed at a decent time, I got good sleep without chronic pain. I will mention, though, that I’ve gone through many revisions on which type of bed to use. I have a Sleep Number and can adjust but the settings are too dense/soft between the settings I use. Adding in foam toppers (currently at 1 1/2″) and mattress toppers have mostly helped, but it’s still a work in progress.
6. Exercise (but don’t overdo it!).
My experience: Yoga has helped tremendously and I do it almost everyday. The Wii Fit Plus works well as I never need to go anywhere to do Yoga and follow a routine. Swimming works well but I stopped going for awhile as the chlorine in the pool isn’t the best for health. For more intense workouts, I do push-ups with the Perfect Push-Up, pull-ups, various types of crunches / sit-ups (but doing this carefully), arm-band bicep curls, and exercises that use my body + gravity instead of weights. I also developed a Volleyball MeetUp every Wednesday that turned popular and has been great for me socially and with coordination.
7. Clean up your environment.
My experience: Besides changing out my air conditioner / handler, this will be one of my focuses in 2015. Although I’ve done pretty well with getting natural products for my skin / exterior, I still need to work on the cleaning products. I recently went to a seminar talking about all kinds of natural remedies and will be posting that experience soon.
8. Be your own advocate.
My experience: Besides this blog, I will be speaking more about my story at upcoming events, continue to help others with questions they may have (both on blog and in-person), and take health-related classes.
Autoimmune Rebuilding with Humira
None of the above would have been possible without Humira. As much as I tried to not use a biologic, I realized that my body cannot rebuild and heal (without severe consequences) with a dysfunctional autoimmune system (due to the environmental factors that contribute to autoimmunity – see graph above). Here are my inflammation blood test results from 2014 while on Humira compared to 2012 & 2013 (mostly without Humira):
The graph above shows two markers of inflammation. Normal SED rates range from 0 – 15 and CRP ranges from 0 – 4.9.
- SED Rate: Normal rates 0 – 15. In April 2012, highest was 101 (chronically killing me). My lowest was 4/4/14 which was a 2.
- CRP Rate: Normal rates 0 – 4.9. In April 2012, highest was around 142.8 (chronically killing me). As of 4/4/14, it is under 1 and I have never been that low.
- Fibrinogen Activity: Another marker of inflammation (not shown in graph). Normal Rates 193 – 507. 6/6/13 I was at 578 and on 4/4/14 which was a 203. I do not plan on taking more of the Fibrinogen tests as insurance companies are increasingly not accepting them.
2014 Humira Timeline
- April 2014 (Blood Test) – From November 2013 to February 2014 I used Humira as directed (every 2 weeks). March to May 2014 the longest I would go without a dosage was once per month. The results from April are my lowest in inflammation.
- August 2014 (Blood Test) – 5/30 – 9/2/14 I went off Humira for 3 months (94 days). On average, Humira will stay in your system 82.5 days as the average half life of Humira is 15 days X 5.5 (decay rate). The results were an elevated CRP of 6.3. Symptoms that started coming back were bloating, stiff neck (enough to start restricting my movement out of bed), weight decreasing to upper 140s, mucus in BM & and fissure was starting to occur. With these results and my doctor’s suggestions I went back on Humira but only taking one dosage per month.
- December 2014 (Blood Test) – 1st month (September) still had the most symptoms (but issues above mostly cleared up within 2-5 days) and 2nd month (October) I was almost symptom free. By the 3rd month (November) things did clear up and I was back to normal.
NOTE: One major issue I thought I had while on Humira was hives. It turned out that visitors to my home had brought bed bugs and after they left, I was bitten by them thus causing the hives and in no way was due to taking the Humira.
My Weight
In 2013 I went underweight due to malabsorption in the body (classic symptom of Crohn’s disease) and my lowest weight was 118lbs. After taking the Humira to suppress my autoimmune system and continuing my diet, my weight went back up to my normal weight. The graph below shows from April 2013 – April 2014, my weight has mostly stayed in the 150lb. range and is today at 154lbs.
Weight fluctuation 2013 – 2014 while on / off biologic medication and changing my diet.
Highlights of the Autoimmune Rebuild 2014
Now that my health is back in order, it was time to rebuild my life instead of focusing most my attention rebuilding my autoimmune system.
Masquerade Ball Salsa Dancing Group Photo (April 2014) MORE PHOTOS
One of the oldest grocery stores in North America. J A Moisan – Quebec City, Canada
Fairmont Le Château Frontenac Quebec City, Canada
Taken during my tour, the original building of the Hippocrates Institute, one of the first facilities to promote health and wellness over traditional medicine.
Rebuilding my business. This is one of the 3D architectural visualization projects I worked on. Naples Daily News Article
Purchased a Chrysler 200 (car on right) and my old Sebring (left). Did a lot of driving to find a good deal and glad to see I was able to do it without much issue. A year ago this wasn’t possible.
Me with the owners of salsa dance studio during their 7th anniversary event.
Naples Florida pier during a full moon. At this point, my weight was close to normal.
Conclusion
Letting go but not giving up is my new motto for 100 percent health. My hope is to one day be off any medications but I accept this may take years. Until then I won’t give up on finding ways to fix my root causes and not just the symptoms.
looks like your doing great. amazing progress with the weight gain and inflammation markers being down and the improvement in ur posture. figuring out what foods cause flare ups is definitely a difficult challenge. if i even touch a carbohydrate i get a flare up and i think chocolate and even whey protein shakes cause it. i had my neck xray taken last year with the complete loss of cervical curve and im trying to do yoga to fix it but the little pettibon looks nice. i couldnt find one to order online but i found something similiar.
good luck !!! 🙂 ill keep checking ur website for updates!!
Felicia, yes it’s a continual challenge we all face. I found that writing it down in an easy place makes things easier to remember (especially when going to a restaurant). Since you are anti-carb, are you completely no-starch (NSD)?
Although the Pettibon system works, I found that Yoga and swimming (especially with the aqua jogger) did the most for me. Keep hanging in there…
I’ve been on enbrel but I’m still having a hard time gaining weight is there a reason i still feel bad after eating?
On Enbrel, what is your inflammation level? Do you feel fatigued at times? Digestive conditions such as Crohn’s can lead to malabsorption. If you haven’t, I suggest you take some blood tests (look at my autoimmune tests under “my goal” at the top menu bar) to figure out if there are other issues going on while your gut is healing. Also are you eating any kind of starch? If it’s mainly vegetable-based, you are getting the nutrients but nothing is “sticking” so you may need to try out on easier grains such as rice or quinoa. And remember, if the food is hard for your stomach to digest (whether good or bad), this can cause bloating and make your condition worse.
Some times I think I want to go the biologic route and just eat starch. I guess in my mind it is either or for me. I control my A.S. almost completely on the N.S.Diet. I don’t even enjoy bananas (my favorite fruit) or Avocado or Pumpkin. Some times I feel like all I eat are eggs and spinach. Though not true. When I have time I bake breads with coconut flour or blanched almond flour. Neither bothers me. And I eat all the non starchy veggies and fruits, plus all common food animals and animal products. And sugar has little or no effect on me. But all starchy foods and cabbage cause me to flare. I am thankful most of the time because except for chronic uveitis and use of Pred Forte I really don’t take any medicine any more. I weaned myself off mxt and celebrex through N.S. Diet. But as I sit here with maybe a stomach bug all I want is starch and convenience. I started this diet 6 years ago. I have been on and off it testing it several times. But the last major flare a couple of years ago was so bad I said never again am I going off until I am ready to do the biologics. I am trying to hold off until 80 at least. I am 41 now. Just in case the biologic blocks my T.N.F. (tumor neurosis factor the part of immune system that fights tumors) and causes me to get cancer. But how unfair would it be if I took it and still couldn’t eat starch and grains? I have been clean of starch and flares and meds for 2 years. Blessings to you on your healing path and living life.
Can you elaborate on if you are taking any biologics? If not, you may want to try as it drastically changed my SED / CRP rates. Keep in mind there are two schools of thought on fixing root issues: 1) What is your main root issue(s) and 2) If not fully blocked, what are these root issue(s) doing – i.e. the symptoms they are causing. Focusing on #2, I came to the conclusion that I had to take a biologic as my symptoms were causing more root issues than I could manage. With the Humira, I’m able to manage my life now & still work on the root issues (now that I have this blog and data on what I am going through without it).
No, I am not taking biologics. I do very well on the No Starch Diet. I wouldn’t even qualify unless I went off the No Starch Diet. I don’t even appear sick. I have been flare free for two years. I started the diet 6 years ago while I was on my cocktail of meds. But I didn’t follow it strictly and I wasn’t aware of some non starchy triggers for me like cabbage and Brussel sprouts. But when I would fall off completely I would flare really bad. And it takes like 5 months of being back on the diet before my flare passes. 4 years ago I became strict on the diet and took myself off my meds. I got over confident and started eating some starch here and there. Eventually I flared after about 2 months of eating starch and was back on methotrexate and celebrex. I had to do the diet again with the drugs. And it took a year to get back to health. I had to slowly wean myself off the methotrexate and then I gradually stopped the celebrex daily. It’s been 2 years since I have vowed not to stop the diet until I am ready for biologics. I am not comfortable with the how they work though I hear all good things. I would only want to take them if I could be diet free. I would be bitter if I had to do this diet and take the biologic. My doctor thinks one day my diet won’t be enough. But for now it is.
Everyone is different, so I’m assuming that the starch-free foods you are eating are also the ones that contribute to the flare-ups too. Regardless, you’ve done the elimination diet your way and it works your way so you’ve found a path that most cannot (I am still searching for mine as I continue with Humira). If I were in your same shoes, I would rather be bitter as I know the flare-ups (symptoms) won’t happen plus you are most likely not contributing to root issues you may be having. The only thing I may do a check on is a functional medicine test as it can help pinpoint root issues much better than a standardized medical blood test. To make things more understandable to your regular MD, you can also get a standardized blood test at the same time & compare results with him + the functional medicine doctor.
Thank you. I don’t think I am familiar with those test. I will bring them up at my next Rheumy appointment.
See my post above re starch. You might be able to eat starch and avoid meds like many others. It worked for me. Try starch solution.
Hello..I just bumped on your site by accident. You are describing what I am going through at the moment…the unexplained weight loss and continuing to. I just got both an EGD and colonscopy and they both ruled out Crohn’s and Colitis. I have been on the Paleo diet for 5 years before I got this…(Axial Spa). It came out of nowhere and hit my like a mac truck in just 5 months. I am on week 3 of Enbrel and have decided to add gluten free bread and greek yogurt and working on increasing my calorie intake. So fay I have not experienced any flares on those two. I am also beginning to work on the weaning off the Pred (30mg for 5 months). YES! I have been on Pred for 5 months and still losing weight.
I would like to add rice or quinoa but hoping that the Enbrel will help with the weight gain. Any advice…
Out of all the starchy foods I’ve eaten, I respond best to organic rice (white digests easier but brown is more nutritious) and organic quinoa. And, most importantly, try to cook this all yourself.
Because science hasn’t caught up with what is triggering us through testing, the best way to know is to test for yourself in smaller quantities after you have done an extensive elimination diet (mine at https://100percenthealth.us/my-goal/my-daily-routine/#avoid). Along with eliminations, I suggest a functional medicine test first and then a vitamin nutrition test. Along with a good MD/ND/DO/ect. these tests will help you focus on what is going wrong and offer paths to help fixing them.
Keep up the good work and try to stay off them meds if possible. Humira ended up helping the most so you may want to consider if this keeps getting worse. Don’t wait years to make that decision if your weight keeps dropping.
good stuff! had some sticky white rice tonight…lets see what happens tomorrow. As for the weight loss, the doc is checking to see if there are other reasons why I am losing the weight. Now that GI is ruled out he is on to CT scans of abdomen (nothing found) and now pelvic.
So would I ask my Rheumy for a functional medicine/vitamin nutrition test? I think he is waiting to see if the Enbrel will kick in (as am I…fingers crossed). I can’t really say if it is or isn’t since I am trying to figure out which is the Enbrel and which is the Medrol (steroid)
I can identify a lot with what I have been reading on your site. Rheumy is glad they caught this early, but man! I am hoping that Enbrel is the key…steroid taper was denied by my Rheumy until I see him.
Thank you for answering my questions. It seems like you are now LIVING your life. CHEERS!
The Rheumy may help finding the vitamin nutrition test but probably does not know about the functional medicine test. These are done by specialists who are called “functional medicine doctors” and are out of pocket expenses.
I really saw improvements after day 3 on Humira and I believe I had similar results with Enbrel (may take another day or two as it’s been years since I’ve taken it). If it works, you may want to stick with it as you figure things out. Out of personal experience & talking with others who don’t take a biologic, degenerative issues like fusion & bamboo spine will happen if your situation continues. And you definitely want to stay off as many other meds as you can as those create / contribute to root issues. If you can, follow up here and let me know how things are progressing after a week.
I just finished taking Enbrel shot #3. My lower back feels better as well as my knees and ankles but I have developed Costochondritis which as an opera singer and voice teacher is freaking me out. I will see my Rheumy after my 4th shot. I do stretches every morning and try to walk at least 2-3 miles every other day. Just a couple of months ago(5 months) I would go to the gym 5x a week and jog…and now??? I will tell ya what the doc says next week. I am going to look into a functional doctor. I am willing to suck up the cost (on a teacher’s salary).I have already been gaining weight which is good…I just gotta make sure it does not get out of control! lol
HELLO SIR,
Well I am two months in, and I think the Enbrel is beginning to kick in. He is giving it one more month has mentioned switching me to either Humira or Remicade. The fatigue and the pain around my thoracic spine is still an issue BUT better than before. The latest DX for me is Reactive Arthritis as nothing is being shown. Since I was switched to Medrol from Prednisone, I have gained weight but I also now have moon face. We started the Medrol tapering and going incredibly slow (started this week with just 2mg for the next two weeks). He also added a low dose of Methotrexate (5mg) to aid in the tapering. Started seeing a nutrionist to work out my diet since I have been Paleo for the last 6 years, and seeing what can I re-introduce. White rice is good thus far and sweet potato…I have added gluten free bread. Also started physical therapy to start rebuilding some massive muscle I have lost. The Rheumy is going to see how the Enbrel will do while I am tapering….would like to know how you are doing thus far.
Best,
H
The Humira continues to work well for me and it seems like I am lasting longer than others. It can waver, but if I stay away from offensive foods (bread, dairy, etc.) and continue with rice & veggies most of the time, my system works. Did you ever get your inflammation rates tested (CRP, SED, etc.)? It would be good to know how high of a level you might have as it correlated directly with my symptoms. Good your seeing a nutritionist, but are you going to try to find a functional medicine doctor to help pinpoint the areas of nutrition you lack?
Having said all that, I know you must be overwhelmed and I applaud you for what you’re doing right now. Just remember it took me years to get here and it’s been the toughest thing I’ve ever gone through. You’ll get there, but you need to continue the good work you are doing now.
Hi, I am off all medications for over 9 months and clear from any symptoms of ankylosing spondylitis, psoriatic arthritis and psoriasis for over a year. I also came off blood pressure medications and asthma meds. I am in full health and exercising daily without pain. I went through a lot of steps to finally find a very simple diet that works for me. Starch was not the problem but the cure in my case. I did Dr. McDougall elimination diet for two weeks and then followed strict starch solution. I do not eat any animal products, dairy or oil (100% no oil). I also limit citrus fruits and tomatoes. Other then that I eat everything with no issue now. As time has gone on I have become stronger and more tolerant. For me the focus on excluding starch wasted a lot of time, as did including processed oils (all oils are processed). See Dr McDougall and Dr Gregor for further details. It works.