Do You Have an Autoimmune Disease?

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Thank you for taking the time to come to my site and research ways to better your health or the health of another.  Throughout this site you will learn my autoimmune disease called Ankylosing Spondylitis (AS) and ways I am trying to curing it without biologic medicines like Enbrel.

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Learn the Cure for Auto-Immune Diseases

Learn the Cure

autoimmune inflammation rates from 2011 to 2014

3rd Year Review
(Getting My Life Back Together)

ceviche grouperRecipes

Getting My Life Back Together – The Autoimmune Rebuild of 2014

Quick Links

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:

autoimmune environmental factors

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):

autoimmune inflammation rates from 2011 to 2014

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 while on / off Humira 2013 - 2014

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 Elegant Rumba

Masquerade Ball Salsa Dancing Group Photo (April 2014)  MORE PHOTOS

J A Moisan Old Grocery Store North America

One of the oldest grocery stores in North America. J A Moisan – Quebec City, Canada

Fairmont Le Château Frontenac

Fairmont Le Château Frontenac Quebec City, Canada

hippocrates health institute original building

Taken during my tour, the original building of the Hippocrates Institute, one of the first facilities to promote health and wellness over traditional medicine.

 

Autumn Blossoms End of Life Care Residence 3D Concept Naples Florida

Rebuilding my business. This is one of the 3D architectural visualization projects I worked on. Naples Daily News Article

Chrysler 200 (car on right) and my old Sebring (left)

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.


007 Salsa Dance Event Fort Myers Florida

Me with the owners of salsa dance studio during their 7th anniversary event.



I'm at the Naples, Florida pier during a full moon.  At this point, my weight was close to normal.

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.

2nd Year Autoimmune Review

1st Year Autoimmune Recap (2012)

On January 14th 2012, I began the process of eradicating my auto-immune disease in hopes to attain 100 percent health.  Started a 21-Day Reboot  (January 18th) – 3 week start of the “no starch diet” (NSD) + eating vegan.  I lost over 10 pounds and found out quickly this diet was not for me.  During my first 6-months, I  got off Enbrel for goodon February 7th, took many medical & holistice testswent to Costa Rica, started on an ibuprofen regimen, found out I needed starch (rice),  started an exercise regimen, and was able to expand my starches with potatoes and stopping the “no starch diet” (NSD).  From 6 – 12 months later (my first year), I discovered that my digestive system was medically dysfunctional and developed Crohn’s disease, IBS, and Ulcerative Colitis. Continuing to be off a biologic medication (i.e. Enbrel), I was given Prednisone, Asacol & Omeprazole medications along with the eating protocol of the Specific Carbohydrate Diet to reduce inflammation & heal the gut lining.  In the end of 2012, my health was strong enough with the medications to go on a 4-day cruise.

2nd Year Autoimmune Review Details (2013)

In 2013, I learned that the focal point of all my symptoms stem from inflammation. The higher it is, the worse I get.  Below are the rates of inflammation that I had in the past two years (Dec. 2011 – Dec. 2013) along with explanations of what I did during those times.

Rate of My SED and CRP Rates of Inflammation

My SED and CRP Rates of Inflammation from Dec. 2011 – Dec. 2013 (2 Years).  Note the normal rates for both are under 15.

  • 10-20% Health – Mid-March 2012 Enbrel out of system, could barely tie my own shoes.  Life unbearable at times, but parents lovingly got me through as my body was slowly healing.  Many symptoms developed at this time.  Rates of Inflammation:  CRP spiked from 9 in Dec. 2011 to 142.8.  SED rate at 101.
  • 20-40% Health – July 2012:  Eating and learning to cook a healthier lifestyle improved my condition, but times still unbearable and started a regimen of ibuprofen to function in my daily life.  Started many tests to determine root causes of my issues.
  • 40-50% Health with Bursts:  December 2012 – Found major root causes from the tests I took.  Symptoms / issues pointed to Crohn’s Disease / IBS / Ulcerative Colitis (Which might have developed due to the ibuprofen I was taking – Mayo Clinic states:  “Don’t use ibuprofen (Advil, Motrin, others), naproxen (Aleve) or aspirin. These are likely to make your symptoms worse.”).  My bursts were coming from taking Prednisone (hard to sleep taking this) and going off ibuprofen.
  • 40-60% Health: April 2013 – Detoxification off of meds and supplements.
  • 30 – 50% Health:  June – Early September 2013:  Recommendations from an autoimmune specialist put me on a new set of supplements and tests.  Although I reverted back to my lowest points in 2013 (I needed other people to help drive me to places and did not leave the house sometimes for a weeks), I did find root issues:  Mold / fungus in my houseoxidative stress, and leaky gut syndrome (nutrition dysfunction).  Taking medications helped the root cause, but made my system weak.  Supplementation either had little help or was harmful.
  • 50 – 70% Health – Mid-Late September 2013: Introduction of Low Dose Naltrexone (LDN).  With low cost and minimal side effects, LDN boosted my health around 20% + getting off all the “fixing the root cause” medication & supplements.
  • 70 – 85% Health – November / December 2013:  Along with the Low Dose Naltrexone (LDN), I started taking Humira due to my Iritis attack.  Within the 1st 3 days after Humira I saw significant consistent improvement.  Increasing weight along with exercise / Yoga has continued to increase my health.  In December, back to a “normal” weight, Iron levels back to normal (no anemia), and have more energy than I ever had in my 30s.  Rates of Inflammation:  CRP rate at 3.3 (better than when I was on Enbrel and had a CRP of 9.5) and SED rate of 4 (review latest test).

For more extensive details, review my daily and weekly autoimmune diary for 2013.

Autoimmune Tests Taken

Out of all the autoimmune tests taken for 2013, the ones that helped me were functional medicine test and the comprehensive blood tests.  My gut ecology profile test did show for a fungal infection, but later determined that it was the water kefir I was taking.  The Leaky Gut Absorption Test was just verifying my nutritional deficiencies.  Once I started taking Humira and got my inflammation down, I was no longer nutritionally deficient.  The Cyrex (Array 4) food intolerance tests are someone accurate and did give me a starting point of food elimination.  But other markers, like eggs, turned out to happen because I was eating too many of them.  The Diagnostechs adrenal stress test is a waste of money for me as the stress levels were all due to the increased inflammation.

What I Have Learned in 2013 (Helpful Health Tips)

Autoimmune Recipes

Where Do I Go From Here?

In 2013 I learned that if I block the inflammation, I block the symptoms and most of the core issues.  Right now Humira is doing this, but I am looking for the reason why the autoimmune system is sending these signals to inflame my body.  The only consistent theory so far is making sure to eat clean and whole / real foods and this may take many years to clear out of my system.

My 6-month game plan is to continue to take Humira and get quarterly comprehensive blood tests done to gauge how my inflammation levels are in comparison to the food choices I am making.  For example, after starting Humira + LDN + better food choices, my CRP rate is at 3.3 which is better than when I was on Enbrel and had a CRP of 9.5 and SED rate of 4 (review 11/12/13 test vs. 12/6/11 test while on Enbrel).

Possible Future Plans to Finding the Autoimmune Root Cause

2013 Autoimmune Diary

My Autoimmune Diary for 2013

Rate of My SED and CRP Rates of Inflammation

Rate of My SED and CRP Rates of Inflammation from December 2011 – December 2013 (2 Years).  Below is about how I felt, what worked, & what made me worse.

January to Mid-July Autoimmune Diary

From January to April, I found out that the colder weather in southwest Florida makes my muscles stiffer and overall makes me more miserable.  My Raynaud’s syndrome is a good visual marker (makes my fingertips blue) for when things are too cold and start to stiffen up.

2/18 – Off Prednisone 5mg (1/2 pill) at night.  1st morning sucked, but got better on 2nd day.  After 1 week, was good without it, but still have trouble sleeping.  3/1 off Prednisone completely.  1st day; after my jaw locked up & went away next day.  2 days later the area next to my index finger and thumb felt like it was sprained; went away the next morning.  Did a ballroom dancing lesson on 3/6 after a long day dealing with banks & the Waltz just about killed me – I felt like rock bottom getting of Prednisone.  3/7 Went to bed at 11pm & got up only once at 4:30am; I can’t remember the last time that’s happened.  Another week gone by and getting up 2X in bed, then starting 3/14 go to bed by 11pm, get up at 2-3am & wake 6:30am.  Sleep seems dependent upon exercise level – the harder I do, the harder it is to rest.  From 3/17 – 4/17 I did a one-month detox (review benefits and side effects) and overall felt better after it was done.

One Month Autoimmune Detox History

As of 3/17 I stopped exercising & at 3/20 I’ve removed all supplements from my diet.  3/20-3/22 visited Sarasota (2 hours North of where I live) & had the longest sustainable day since I began the diet on 3/21 from 8:30am to 11:30pm.  Back in Naples on 3/23 & crashed – 13 hours of sleep on 3/23 & 12 hours on 3/24.  This confirms I am still anemic & am back on my iron supplement.  Started feeling better and then had something that did not agree with me at Whole Foods on 3/30 (may have been tomato paste hidden) and flared up for the next 2-3 days.  Normally this would only take 1 day, but detoxing makes me more susceptible to flare-ups and I got a cold (1st time since I started the diet) that everyone around me was getting (lethargic, scratch throat) from 4/1 – 4/14.  Worst days were 4/5 & 4/6 as coughing prevented me from sleeping.  On 4/5 at 2am and 4/6 10pm felt a chocking feeling and violent cough to remedy which made me sore all over from shoulders to bottom of ribs.  Using an elevated pillow, Mucinex (Fast-Max severe congestion & cough), a sore throat spray, lots of chicken soup, and menthol cough drop while going to sleep improved my condition and allowed me to sleep.  Cold started to go away on 4/8 but is still lingering around and did not leave the house for a week.  The detox reduced weight slightly but the cold took my weight from 130 to 127lbs – my lowest since starting the diet.  Average weight in so far in 2013 is 131 lbs. and fluctuates from 127 to 134lbs.  Most days I average 8 hours of interrupted sleep (get up 2-3 times per night) and add 1 1/2 – 4 hours of sleep in the daytime.

Since I began the detox, I now require 8-12 of sleep per day.  Every hour past 7 hours of sleep doubles/triples reduces my symptoms & lethargy.  I have not seen any serious shooting pains and hip pain (unless my belt is too tight) when I ballroom dance.  Went bowling on 4/21 and it wrecked my body for a week, so I started to go back to swimming on 4/28 to help build up my strength again.  Unfortunately I developed a hemorrhoid from going to the bathroom 4-5 times per day (did this for about a week) based on too much insoluble fiber.  Bulking up back with rice & continued usage of acacia fiber helps bring it back to normal.  Proctosol bring the hemorrhoid back to normal levels and calmoseptine ointment helps the inflammation.  But the process of getting the hemorrhoid is taking weeks (started around 5/8) to fix and developed blood in my stool on 5/14 – 5/17 (some after but not nearly as severe).  I have also double the dosage of my iron supplement from 5/6 – 5/11 to try and increase my energy levels and I see no improvement during those days nor reduction going back to one supplement per day starting on 5/12.  Although my weight has decreased to it’s lowest levels (124 lbs) and dealing with the hemorrhoid issue, my health has seen an increase starting mid-May as I reduced the amount of food I eat per meal + having rice at least once per day.  In late May, my energy levels once again dipped and found out on 5/29 that adding more protein to my diet would help along with eating more, smaller meals throughout the day.  I have also been given the green light to start eating eggs again since my Cyrex test last year showed it was equivocal and those numbers may have occurred due to the high amount of eggs (3-4 per day) I was eating while taking the test.  On 5/30 I noticed an improvement and am now able to start swimming again on 6/2, but found out that I’m still too weak and one exercise can keep me too sore for 3 days afterwards.  I will stick mostly to walking and very light swimming if I get the chance.  I took my autoimmune tests and a new batch of supplements as prescribed by the autoimmune doctor around 6/10 and in the middle of my fluctuating a lot.  Sometimes I feel great during the day, other times I’m tired, my weight increased 4.5 pounds in 2 days and then I lost it all within the next few days afterward.  Based on the initial blood work test, I was suggested to stop taking my iron supplements on 6/15 due to oxidative stress.  I also was able to drive to the east coast and back on 6/15.  While it was very uncomfortable the last 1/2 hour there & back, I was able to do it along with walking 1 1/2 hours around the mall areas.  Back in April 2013, I went on minimal supplements (detox) and crashed 2 days after I stopped taking my iron supplement.  Starting after 6/15, however, my health has improved without taking the iron supplement & I feel no crash from removing it while taking the other supplements the doctor has recommended.  The only exception to this is the protein powders as I can’t sit for more than 10 minutes without getting up very stiff.  I can only take one scoop of Nutriclear or these symptoms keep coming back.  On 6/28 I had dinner & Chardonnay with a friend which lead to a minor mental breakdown & have felt much better after that talk.  Evenings, however, are still the toughest and I’m still figuring out how much to eat / what to eat that keeps these things calmed down.  On 7/3 learned that I have a fungal infection that might be a root cause of my issues and my air conditioner handler was full of mold (found out both within the same hour).  Confirmed with my autoimmune doctors, I had the air conditioning unit & handler replaced on July 4th and finished on the 5th (added a return vent).  Went over tests with my autoimmune doctor and started taking anti-fungal medication prescribed by my D.O. on 7/12 and received a massive flare-up behind both ribs / mid back area, right hip shooting pains and neck pain that lasted until 7/15.

Mid July – August Autoimmune Diary

7/12 – Started on medication.  No major issues, but the lozenges do make my tongue white since it’s a chalky-based lozenge.
7/13 – Morning felt pretty good.  By afternoon, though, my mid-back and ribs are very inflamed and felt like someone hit me with a baseball bat.  Shooting pains in my right hip and my neck was stiff & sore.  Sleep was terrible & could barely get out of bed – 11pm to bed, up at 12:30, back up at 4am, went back to sleep at 5am, got up at 6:30am, went to sleep at 8:00am, got up at 9:30am, you get the drill…
7/14 – Still very inflamed & hard to get out of bed, but not as bad as 7/13.  Still some shooting pains & back still bad, but went to bed at 10am, got up 1:30am & 5:30am, 8:00am & 10am.  Slept most of the morning with a total of 12 1/2 hours of sleep.
7/15 – Went to bed at 10:30, got up at 3:30am & was able to sleep again until 7am.  Took an afternoon nap for 1 1/2 hours & was able to be semi-productive with work throughout the day.  Evening went for a short walk and mid-back & ribs start acting up again.  Late evening (around 9pm) things are better, but still stiff.  At this point I feel almost the same as I did before I started the medication with some additional rib / back pain.
7/16 – Went to bed at 10:45am, got up 1:15am, then got up at 6:15am.  Got up with a very stiff & sore mid-back / back rib area slept from 8am to 9:30.  Took a nap in the afternoon from 12:45pm to 3:30pm, neck & shoulders stiff but back better.  Went to a Whole Foods class at 6pm & still can’t sit longer than 1/2 hour on a hard chair; pretty exhausted by 8:30pm.
7/17 – Went to bed at 10:30pm & got up 2:30am & woke up at 6:15am.  Went back to bed at 7:45am & got up at 9am.  Morning and afternoon went better & feeling the best so far during the week; body still sore, but not as severe.  Difficult but took a nap at 1:30 – 3pm and all was fine throughout the day.  At dinner had 1/2 a baked potato & started to get that mid-back pain, so I’ve stopped eating potatoes for now.
7/18 – Went to bed at 11pm, got up 1:15am & then 7:30am.  As each day progresses it seems I’m able to get more sleep throughout the night.  Woke up and my lower back was very stiff (as expected since I was in bed for so long).  I’ve also been losing weight since 7/16 & am down to 121 lbs.  Took a nap from 2:10 – 4:15 and woke up weak.  Mid-low back is locking up again and difficult to bend over and do much.
7/19 – Drank Chardonnay, bed 10:30pm, up at 12:30 then up at 5:20am.  Went back to bed at 7am & up at 8:45am.  Felt stronger today & overall better throughout the day.  I have a feeling it’s the lack of food absorption and not having rice 1/2 the day.  Symptoms are still low, mid-back, sides (back of ribs), neck is a bit better.  Took a nap from 3:30pm to 6:30pm.  In the evening my mind / energy doesn’t need to sleep early, but my degrading body does.
7/20 –  Went to bed at 10:30, but slept at midnight.  Got up at 3:00am, then 6:45am, back to bed at 8:45 and woke up at 10am with back and neck stiff but times after 10am & early afternoon are the best for me and the inflammation.  Afternoon nap from 3:45pm to 5:15pm.
7/21 – Bed at 11pm, up at 3am, then up at 5:45am.  Back to bed from 7:15-9am and feeling less pain & inflammation.  Today will be the last day I am on the Clotrimazole and I have felt the best today overall than any other day.  Made chicken soup and found out my bullion is now made with yeast extract but still testing it anyways.

Starting Nystatin liquid 4 tsp per day for 10 days
7/22 – Went to bed at 10:45pm, up at 1:30am, then 6:15am, back to bed at 8am to 8:45am and not feeling as good as yesterday.  I have a feeling it’s due to the yeast extract in the chicken soup and will stop eating to verify.  Took a nap from 12:45 to 2:45 and wearing down in the late evening.  Had a glass of Chardonnay & this time no help.
7/23 – Bed at 11:15pm, up at 5:15am very tired & sore (hard to get out of bed).  Went back to bed at 6:30am and up 8:15am feeling much better.  Again & again this confirms that I need at least 8 hours of sleep plus I feel my worst during times of sleep.  I also tend to start crashing around noon & took a nap from 1:10pm to 3:50pm.
7/24 – Bed at 11:15pm, up at 1:30am, then up at 6am.  Back to bed at 7:45am and up at 9am.  Stiffness better, but harder to walk around since I took a walk last night for 20 min.  Took a nap from 11am – noon and the walking is back to “normal”.
7/25 – Bed at 11:15pm, up at 4:45am, back at 5:15 – 7:15 then 9:15 -10:30am.  Took a nap from 2:15 – 3:30pm.  Today my body is very sore from the muscles I use to pull myself out of the bed.  Back and neck are stiff as usual.
7/26 – Bed at 11:15pm, up at 4:30 – 4:45am, up at 7:15am.  Took a nap from 1:15pm to 3:15pm.  Sides of my body (especially left side) hurt, but other parts I use to pull out of my bed have healed since I roll out of bed instead of the normal pulling.  Back & neck are stiff as usual but not as sore as 7/23.  Evening  consisted of an energy healing class and then stayed out late with a late dinner at 10pm.
7/27 – Bed at 12:45, up at 5am, back to bed until 7:30am. Went back to bed at 9:15am – 10:30am.  Took a nap from 1:45pm – 3:15pm.  Felt better than previous days although difficult to get into the seating position due to uncomfortable chairs from the healing session (most discomfort went away today mid-day).  Started to crash around 9pm.
7/28 – Bed at 11:15pm, up at 4:15 then 7:15am.  Today’s biggest inflammation is in the neck.  Went to the pool (walked to each side of pool & back 10 times + hot tub) and took a nap from 11:15am – 12:45pm mildly sore all over but better range in my neck.  Took a nap at 4:15pm – 5:15pm, vacuumed house in the evening.
7/29 – Bed at 10:30pm, up at 3am, then up at 6:45am with stiffness in the neck and all down the spine.  Took a nap at 1:15pm to 2:45.  Dinner time had a couple glasses of Chardonnay and felt pretty good.
7/30 – Bed at 11pm, up at 4:15 then up at 7:15am.  Back to bed at 9:30am – 11am.  Took a nap from 2:30 – 4pm.  Overall feeling better, but tired and stiffness in the usual places plus stiffness in the ankles / feet (most went away by afternoon nap).
7/31 – Bed at 11:30pm, up at 2:15am then 7:15am.  Took a nap from 1:15pm to 2:45pm.  Overall the day is better, but general pain from the mid torso to my neck…the usual pains.  Neck would stiffen up as the day progressed or as I would lie my neck in a stationary position, but again…normal.  As I write this at 9pm I have just finished the last of the Nystatin I am required to take..hooray!  Tomorrow will be a week-long “die-off” period along with supplements to take care of my leaky gut syndrome.

Die-Off” (After Effects) 7-Days After Medication
8/1 – Bed at 11:00pm, up at 12:15am, then 2am, then 6:30am.  Napped from 8-8:45am and 1-2:30pm.  My lack of good sleep patterns are due to my neck stiffness and it continues throughout all day.  Driving and going to places in the morning was not easy and was tired/stiff.
8/2 – Bed at 10:30pm, up at 12:45 then up at 5:45 and alert.  Went back to bed from 7:15 – 8:45am.  Early morning more alert & got up a bit easier, but late morning back stiff if I sit more than a few minutes.  Took a nap at 3:15pm – 4:45pm and my neck got stiffer as the day progressed along with mental focus.  After 7:30pm, neck got very stiff and started to develop a mild headache.
8/3 – Bed at 11:15pm, up at 1:15pm, then 6:30am.  Back to bed from 8:30am to 10am.  Neck still stiff (not as much as previous night) along with concentration issues.  Travelling local felt very tired from 1-3:30 (I think my body is used to this time sleeping) and napped from 3:30 – 5:30pm.  Neck still stiff in evening time but not as much as yesterday evening.
8/4 – Bed at 10:45pm, up at 12:30am, 4:30am-4:50am and then up at 7:30am.  Napped from 11am-12:30pm.  Neck still stiff at morning time but did better after the nap.  Strangely enough I’m noticing within the last 1-2 weeks that my nails are growing much faster.  At this point I get tired a lot throughout the day, but the inflammation is reducing.  The bad sleep patterns at night are again due to the neck.
8/5 – Bed at 11:15, up from 2:45-3am, then up at 7am.  Slept again from 10:30-12 with no afternoon nap.  Woke up with a stiff neck & shoulder areas as usual & tired throughout day.
8/6 – Bed at 10:45pm, up at 12:30, then up at 6:30am.  Slept again from 9-10am.  Woke up with stiff neck as usual, right foot was in pain too.  As morning progressed, shooting pains coming from my right leg.  Had a few glasses of Chardonnay with a friend and went to bed late.
8/7 – Bed at 2am, up at 6:15am, then 9-10:30am.  Neck was still stiff & right hip with pains but felt pretty good overall.  Took a nap from 1:15pm – 3:15pm.

8/8 – Bed at 11pm, up at 12:45am, then 5:30am.  Went back to bed from 8am – 9:15am and napped from 2:15pm – 3:15pm.  Morning wasn’t as good as 8/7 due to lack of sleep – stiff neck, body overall lethargic.  Took the pea protein supplement in the afternoon and flared me up until after dinner time.  Overall a day I’d glad that’s over.
8/9 – Bed at 10:15pm, up at 12:30, then 5:30; waking up many times in bed throughout the night.  Woke up with a stiff neck and body aches all over (but not as bad as the stiff neck).  Back to bed from 7:15am – 8:30am and then 12:45pm – 2pm.  Did feel progressively better throughout day and took a small walk in the evening along with a glass of Chardonnay.
8/10 – Bed at 10pm, up at 12:30am, then 5:45am getting up multiple times after 4am in the bed.  Slept from 7:30am – 8:15am, then 12:30pm – 3pm.  Inflammation changed from the stiff neck (still there, but not as prevalent) to right hip, inner upper-right thigh area with a pinched nerve.  I’ve been barely able to walk today and whenever I get up from sitting or sleeping, the leg feels locked and very hard to move once up.  While lying down and sitting need to be careful not to twist the leg or elevate it the wrong way.  These past few days have sucked.
8/11 – Bed at 11pm, up at 12:30 and then 5:45am.  At 12:30am, I couldn’t stand the pain any longer and took 1 ibuprofen to reduce some inflammation immediately (helped just enough to wake up a few times in bed & fall right back to sleep).  Right hip / shooting pains issue is still hanging around in the morning, but pains overall through the day are better.  However, I still cannot travel anywhere.  Napped from 7:30am – 9am, 12:30am – 2:15am, then 4-5:30am.  8/10 & 8/11 have required 11.5 hours of sleep each day.  In the evening had a glass of Chardonnay.
8/12 – Bed at 9:45pm, up at 11, then 2:30, then 3:45.  Got up at 6:30am with a headache, feeling weak, and stiff neck. Then took a nap from 9-10am and got up without the headache & energy better.  Took a nap from 1:15pm to 2:45pm with less neck stiffness and my energy levels are better than the past few days.  Right hip still hurts a bit more, but good enough for me to drive a short distance.  Before going to bed, 3:45am, before breakfast, and after breakfast my bowels evacuated and I have a feeling it’s due to removal of the ibuprofen.  It actually felt like my body rejected it.  The autoimmune doctor stated this is a normal side-effect of taking an NSAID / Ibuprofen.
8/13 – Bed at 10:15pm, up at 12am and 3am, and woke up at 6:30am.  Naps were from 8:45am – 9:30am and 1:15pm – 3:00pm.  Woke up to a stiff neck and pain in my right foot.  Foot pain mostly left throughout day but right hip is still not back to the “normal” state.
8/14 – Bed at 11:15pm, up at 2:30am and woke at 6:15am.  Napped from 8-9am and 12:45 – 2pm.  Stiff neck, right foot issues morning and mid-day with the typical overall stiffness.
8/15 – Bed at 11:15pm, up at 12:45, 4:15, and then finally up at 6:45am.  Napped from 9-10am and 1:30pm – 3pm.  Overall a bit better and pains are evenly distributed from the neck, shoulders, rib area (most of this is from lifting myself out of bed) and right hip.  And as usual it’s difficult to get in / out of any type of seat.  Although I see improvement each day I still feel like there is a weight on top of me and I’m slower since I started taking the increase in supplements.
8/16 – Bed at 10:15, up at 2:30, then 6am.  Napped from 7:30 – 8:30am and 1-3pm.  Morning with stiff neck, sore right foot, and overall achiness.  Was able to drive 1/2 hour back & forth to a destination although right hip was acting up 20 minutes into each part of the drive.  In the evening went to an event that I needed to sit for 2 1/2 hours.  The chair was comfortable so I was standing up about an hour or so in & then again 45 minutes later.
8/17 – Bed at 11:30pm, up at 2:30am and 7am with a stiff neck and stomach was sore. Napped from 9-10am & 3:15-4:45pm.  Had lunch with a friend & got groceries at Costco (20 minutes away) and was fine getting there.  Walking through Costco around 2pm started to get very tired and crashed at 3:15pm nap.  Cooked dinner & recuperated the rest of the day.  Had too many potato chips and gave me a mini flare-up (mostly felt weak).
8/18 – Bed at 11:30pm, up at 12:30am, then 3am, then up at 7am still feeling weak from the flare-up last night.  Napped from 8:30am – 9:30am and 2-3:45am.  Felt better after morning breakfast with nap & went to the pool for simple walking exercise (1st time in weeks I could do this).  Body overall achy but expected from the pool exercise.
8/19 – Bed at 10:30pm, up at 12pm, then 2:30am, then up at 7am.  Napped from 9:15am – 10:15am & 2-3:30pm.  Started off the day with a stiff neck, back & shoulders.  Throughout the day the stiff neck stayed along with it being very difficult to sit down and stay (especially on a harder chair).  I believe this pain is due to the pool exercises and not using parts of my leg / thigh muscles for weeks.
8/20 – Bed at 10:45pm, up at 3:15am then 6am.  Napped from 7:45am – 8:45am and 1-2:15pm.  Woke up with stiff neck, left leg hurting and difficult to sit anywhere.
8/21 – Bed at 10:15, up at 1:15am then 5:30am.  Napped from 7:45am – 8:45am and 1-2:15am.  Woke up with right foot hurting (bottom felt swollen), stiff neck and shoulders.  Stiff neck stayed around and seemed more acute than yesterday.  Got rid of the swelling temporarily with an Epson salt bath in hot water for my feet.
8/22 – Bed at 11pm, up at 1:30 then 5:30am.  Took naps from 8-9am and 2-3pm (barely slept).  Right foot continues to swell up and taking red meat (l-carnitine) to reduce the swelling as it has worked in the past (diary entry 6/23).  Also battled a stiff neck which the pain became more acute throughout the day and inflamed / sore shoulder areas.
8/23 – Bed at 10:45am, up at 12:30am, 3am, and then 7:15am.  Napped from 9:45am – 11am & 1:45pm – 3:15pm.  Easier to sleep with the swollen foot but got up more throughout the night.  Woke up with right hip hurting a bit and neck was looser than yesterday.  These past couple of weeks have been hard for me to leave the house and I’ve had friends help bring me groceries from the store.
8/24 – Bed at 11:30, up at 3:45am and then 7am.  Napped from 9 – 9:30am & 2:15 – 3:30pm.  Swollen foot has gone down enough and was able to travel to Whole Foods for groceries by myself.  Neck is continued to not be as rigid as a few days back but now starting to fight hips with shooting pains.  Driving, groceries plus cooking wiped me out by end of day.
8/25 – Bed at 10:30am, up at 1:15am and then 6:30am.  Napped from 8:30 – 9:15am + 1:15 – 4pm and noticed naps are continuing to be under an hour in the morning.  Daytime naps are based on how much I do through the day (traveling in the car, walking, carrying things in the house & cooking) + restrictions (shooting pains, swollen feet).  Fighting with the right hip & shooting pains today and general stiffness overall (if you haven’t guessed by now, general stiffness is everyday but I report the most significant pains for the day).
8/26 – Bed at 11:15pm, up at 1:15 then 6am.  Napped from 10-11am & 1:45 – 3pm.  Had to do a blood draw at 8:15am and fasted.  Very difficult to get in/out of neighbor’s car who drove me there.  Shooting pains mainly on right hip but left leg felt bad in the car.
8/27 – Bed at 11:30pm, up at 1:15am then 6:30am.  Slept from 12:45 – 2pm.  Started trying not to take naps in the morning as I don’t feel as enough energy loss to do so.  Right hip was still bad but decided to tread water with the Aqua Fitness Jogger for 10 minutes at 9:30am plus vacuumed in the evening time.  Both activities wiped me out by bedtime and got a stiffer neck after waking up from nap.
8/28 – Bed at 11pm, up at 12:30am then 5, and finally 8am.  Took a nap from 1-3pm.  Stiff neck (but less than yesterday), both hips with alternating shooting pains.  Getting in/out of chairs continues to make legs stiff / locked and more prone for shooting pains.  I can sit in “harder” chairs longer, but still dealing with stiffness when I get up.
8/29 – Bed at 10pm, up at 1am, then 5:30am.  Took naps from 8-9am & 12:30-3pm.  General stiffness everywhere and took a small walk at 6:30pm.  Doctor results from CMP blood work done reveal levels that have been the same and specifically safe with the liver.  That means the Clotrimazole & Nystatin I took for the fungal infection has not damaged my liver.  I still need assistance with driving around town but am stronger than earlier on in the week.
8/30 – Bed at 10:15, up at 11:30am, then 2:30am, then 6:30am and was exhausted in the morning.  Napped from 1-2:15am.  Friend came over in the morning to bake cookies that are safe within my dietary ingredients (my 1st cookie in two years!).  Afterwards received an energy healing (I’ve had 3 of these within the past two weeks).  While I have not found them to relieve my pain throughout the day, it calms me down during the session.  I also learn a few ways to refocus my mind on the positive instead of focusing on removing the negative.  Examples would be visualizing parts of my body working and not declaring the inflammation as “mine” but as “it” (allowing detachment).
8/31 – Bed at 10:15am, up at 12:30am, then 2am, then 6:30am.  Napped from 9-10am & 1:15 – 3:30pm.  Went to pool at 11:15am for 10 minutes floating / easy exercises.  Right hip shooting pains occurred in the beginning, but found exercises to work it correctly.  Back of ribs (under shoulders) still hurts due to washing clothes a few days ago along with lack of leg strength (shooting pains right leg) as usual throughout the past two weeks.  Today I ran out of Seacure so the only left is Interfase.
9/1 – Bed at 10pm, up at 2am then 6:30am.  Napped from 8:30 – 9:30am and 2-3:30pm.  Overall stiff & tired, but found a new way to stay in bed using a mason jar.
9/2 – Bed at 11:15pm, up a 2, the 6:15am.  Napped from 8:45 – 10am & 1:15 – 4pm.  My front chest / sternum was increasingly hurting the past two days from pulling myself up out of bed but today it’s in bad shape.  It’s also hard to move the shoulders more than usual and the whole body aches especially after the afternoon nap.
9/3 – Bed at 11:15pm, up at 2:15am, then 6am.  Napped from 5pm – 6:30pm.  Sternum, back sides / shoulder blades & legs hurting as usual.  Today I met with my Rheumatologist and picked up my low dose Naltrexone (4.5MG).  Had a big double-burger in late afternoon and my body felt better but it was a long day for me.  Later bathroom breaks reveal mucus and other issues of rejection.

 


 

Results from this point on due to taking 4.5MG of Low Dose Naltrexone along with finishing up the Interfase for leaky gut.  

 

9/4 – Bed at 10:15pm, woke up at 6:30am, napped from 9-10am and 1-2:30pm.  Woke up many times throughout the night (every 1/2 hr, 3/4 hr, 1 hr, 2 hrs mix).  Woke up with sore hips, legs, sternum, and shoulder blades.  I would have a rapid amount of dreams and thoughts throughout the night.  Since the Rheumatologist and disagreed on things and I spoke with my parents that evening, the dreams were a mix of the two.  Was able to cook dinner for friends in the evening along with fish & play chess after 8pm.  Losing weight and at my lowest of 117lbs.
9/5 – Bed at 10, up at 2am, then 7:30am.  Napped from 9-11:30am and 3:15-4:30pm.  And like yesterday, having many dreams and thoughts throughout the night along with my body jerking (and waking me up sometimes with shooting pains) whenever I had a dream involved with an quick action.  Had to take 3 bathroom breaks than my normal 1-2.  Woke up with sore spine, neck, shoulders, hips, and tired.  I slept 13 1/4 hours today.
9/6 – Bed at 10:15pm, up at 4:30am.  Stayed up until 6am and napped until 7:45am.  Afternoon nap from 1:15pm to 3:15pm.  Woke up stiff all over at 4:30am.  This was by far the worst sleep I’ve had in months.  Every 20-30 minutes I woke up with a shooting pain like someone was using an electric prod or taser on stun mode.  When I woke up at 7:45am, my right hip and neck were the biggest issues.  Did light swimming for 10 minutes at 11am.  During the afternoon nap, my mid section locked and back right / left ribs would send shooting pains if I moved.  Getting out of bed was not easy but was able to roll out of bed.  Today was my last day using GI-Synergy supplement.  Had some soup at 4:30am & contributed to 2.5lbs weight gain in the morning.
9/7 – Bed at 9:30, up at 6:30 waking up intermittently but going right back to bed.  Napped from 9:30am – 10:30am & 1-2:30pm.  Still up throughout the night but was half as bad as yesterday.  I also did not need to leave the bed to go to the restroom and will continue this trend with the mason jars (I think I do worse if I try to get up in the middle of the night).  As usuals woke up with neck, shoulder, legs / hip pain but not as bad as yesterday and I am finally starting to see some improvement! Throughout the day got weaker and my ribs / sides in the back area were sore and if twisted the wrong way would send shooting pains.  Sitting back in any chairs did not work.  Also hard to get out of bed in the afternoon because of those shooting pains (took me 20-30 minutes).  I was able to take a short walk at 6:30pm.
9/8 – Bed at 10pm, up at 5:30am waking up intermittently. Napped from 7:30am – 9:15am and 2:15 – 4:30pm.  Prior to morning nap I was weak with back rib area, neck, knees, legs, shoulders & hips hurting.  After on/off morning sleep, I felt better in most of these areas.  I was able to travel to two stores with help from my neighbor and getting in/out of the car was easier than last time.  Developed a headache after the afternoon nap all day and is dull in the late evening.  I am up to 121lbs. now.
9/9 – Bed at 10pm, up at 6am waking up intermittently.  Napped from 7:45 – 8:30am & 2-3:45pm.  Main pains of the day were the left leg / hip areas & knees.  I also became weak during my afternoon nap (I had the ceviche but am finding my body isn’t good enough to handle on it’s own) & in the evening.  Had a steak for dinner & felt better in the late evening.
9/10 – Bed at 10:45pm, up at 6:30am waking up intermittently.  Napped from 12pm – 2:30pm.  Left leg and shoulders again, but went to the pool for 10 minutes at 9:30am and did a short walk at 7pm.  I haven’t done both on the same day in months.  As the evening progressed, my right foot got puffy / inflamed again but went away after I woke up the next day.  Weight still decreasing and at 118lbs now.
9/11 – Bed at 10:30pm, up at 3:45am – 4:15am and 8am.  I was too uncomfortable to stay in bed and had to get up.  Better range of motion in the morning for my shoulders & some in the neck.  Pain still in left leg & hips, but better.  I’m at 118 1/2lbs today.  Took a walk at 7pm.
9/12 – Slept at 11:45pm (was in the bed by 10pm), up at 6am, napped from 8-10am and 1:15 – 2:45pm.  Usual hips and legs sore.  Right shoulder blade was predominantly sore throughout day along with left front rib in afternoon / evening.  I was able to pick up dishes in the morning without needing to lean with one arm.
9/13 – Bed at 10:30pm, up from 4:30am – 5am and then woke up 8:15am and napped from 3pm – 4:30pm.  General spinal / back stiffness along with left hip & leg.  Was able to finally do a half-moon pose in Yoga and was at the pool for 15 minutes at 10:15am.  Whole body was sore from afternoon to evening but went mostly away by next morning.  Developing diarrhea and lots of gas the last few days and have a feeling it’s due to my intestinal system rejecting the low-dose Naltrexone (but still works as it should with my mind / opioid receptors).  Still averaging 118 lbs.
9/14 – Bed at 10:30pm, up at 5:45. Napped from 8 – 9:30am and 2:15 – 4:15pm.  Still have the diarrhea / gas in the morning but much less as the afternoon progresses.  General stiffness all over along with hips / legs.  Travelled to three separate places today and did lots of walking along with carrying 8 jugs of spring water.  Needed afternoon nap, but was not exhausted.

9/15 – Bed at 11:15, up at 6:15am.  Napped from 8-9am & 3-4:45pm.  Pain mainly in the shoulder blades and getting shooting pains in my left leg.  This was mainly due to riding in my parent’s car which is a little stiffer plus going out to eat (again, stiff seats).  As a sidenote, it was great seeing my parents since they left last May.
9/16 – Bed at 10:30, up at 4:30am, then 7:15am.  Napped from 9:30am – 12pm.  Woke up with neck, shoulder, sternum & low-back pain in the morning.  Overall just too tired to do much in the morning, tried sleeping on my side and didn’t get enough quality sleep.  Throughout the morning nap, I switched back to my back automatically and got the rest of the sleep I needed.
9/17 – Bed at 10:30pm, up at 4:15-4:30am and then 7:15am.  Napped from 9:30am – 10:45am, 2:15 – 3:45pm.  Overall moving better all over.  Some stiffness in the neck and shoulder blades / shoulders.  Late morning was my best time and was walking almost normal.  Went to pool at 11am for 20 minutes and did a small walk before I went to bed (around 9:30pm).
9/18 – Bed at 11:15pm and up at 6am.  Napped from 8-9am and 2-3:15pm.  Throughout night I usually wake up around 12:15am, but this time it was 2:15am.  Woke up with right leg limping again along with stiffness in right shoulder blade, neck, and low-back.  Right leg progressively worse as the day and evening progressed.
9/19 – Bed at 10:30pm, up at 6:45am.  Napped from 8:30am – 10:30am and 1:15pm – 3pm.  Pain mainly in the legs, shoulders and neck.  After breakfast, had a big bowel movement and was unexpected.  Throughout day the pain & limping would jump from the right leg to the left leg (after afternoon nap) and right shoulder blade acting up in the late afternoon.  Took a short walk at 5pm.
Sunset Vanderbilt Beach Naples Florida

9/20 – Bed at 11:45pm, up at 5am and slept from 6-7:45am.  Took an afternoon nap from 1-2:45pm.  Pain with neck / shoulders, shoulder blades and legs.  Was able to go to drive and go to dinner and (on a spur of the moment) saw the sunset for the first time in months.  This is also the start of the first fun weekend I could get out in months.
9/21 – Bed at 10:45pm, up at 6:30am.  Napped from 8:30 – 9:45am and 2-3:15pm.  Morning pain was neck, legs and shoulders as usual and the neck stiffened up throughout day.  Since my good bacteria levels are good, I am now at a point in my level of inflammation where I can test to see if fermentation may be a root cause due to the fungal levels I received from my gut ecology test.  As of today, I have stopped drinking water kefiras it is one of the only (and main) fermented foods / drinks I have (and have on a daily basis).  If I get better this week and next, I’ll know fermentation is an issue with my fungal gut ecology.  For activities, I went to Whole Foods twice, Target, and then AZN Cuisine for dinner.  Took a 1/2 hr – 45 min walk after dinner around 7:15pm (longest I can remember in awhile).  I still find it difficult to sit in restaurant booths and chairs.
9/22 – Bed at 10:30pm, up at 5:30am and napped from 7:30am – 9:15am + 3-4:15pm.  Shoulder blades more prominent for pain, but also neck and legs as usual.  My dreams the past week have been 80% about people I don’t know and they come in and out rapidly (not as bad as week 1 though).  These thoughts / dreams / visions can also start within 30 seconds of closing my eyes and make little sense.  I wake up many times saying “What’s wrong with you?” as if my dreams are the 3rd person.  Went to lunch with my parents at California Pizza Kitchen and tried the Barbecue Chopped Chicken salad that was against my diet (had beans, tortilla strips, and salad is raw which is harder / more fibrous to digest).  I’m happy to say NO FLARE-UPS!  And no major deviations that I normally see when I digest food.  This is a great step in the right direction for me.

9/23 – Bed at 11:15pm, up at 6:30am and napped from 8:30am – 9:30am and 2-3:30pm. Pain issues mainly with the shoulder blades.  Cooked in the evening with friends and made a stew with lentils.  While I was able to eat them and not have a flare-up, the flatulence was still there and I could tell I was starting to push things.  I will wait a few days before I have the leftovers.
9/24 – Bed at 11:15pm, up at 6:30am not waking up as much in the middle of the night.  Napped from 8:30am – 9:30am and 1:15 – 2:45pm.  Issues still with the shoulder blades and the standard aches all over in the morning. I’m starting to get less random dreams and developing one continuous dream / story throughout the night.  Went to the pool at 10:30am for 15 minutes and walking a little farther in the evening around 7pm.
9/25 – Bed at 11:15pm, up at 6:45am.  Napped from 1-2:45pm.  Main issues with shoulders (mostly right) and shoulderblades.  Neck also stiff and my right foot gets swollen in the morning.  Saw the Gastroenterologist and wants to do a colonoscopy / endoscopy like last time for confirmation of my Crohn’s / IBS / UC.  Other than that I was cleared.  Finally able to walk down the street & back (first time in over a month).
9/26 – Bed at 10:45am, up at 6:45am.  Napped from 9 – 9:45am and 1:30 – 3pm.  Main pains in right shoulder / shoulder blade.  Some in the neck and hips.  As the day progressed, my right foot stayed swollen.  This is my first time I stayed in bed and slept a full 8 hours (needed to use the mason jar once) since taking my Low Dose Naltrexone.  I’m also stopping to eat eggs for a bit as I think my stomach does not agree with me if I take them everyday.  I’ve switched to rice cereal and/or quinoa cereal with almonds and raisins / craisins.  If still hungry I add in a sausage.  Did a short walk in the evening.
9/27 – Bed at 10:30pm, up at 1:15am then 7am. Napped from 1:30pm – 3pm.  Main issue with right shoulder blade and not as much with the hips and neck.  Went to the pool at 9:30am for 15 minutes.  Evening was a 2 hour energy healing session.  Sitting in a hard chair is really hard on my neck, shoulders and spine.  The energy healer sensed it and along with my meditation helped clear it up for the evening.
9/28 – Bed at 11pm, up at 7 and napped from 8:30am – 9:15am along with 2:45pm – 4:45pm.  Issues mainly with the inner shoulder blades, neck and spine (best guess due to sitting in hard chairs night before).  I was able to extend further in my torso twists on with Wii Fit. Also last morning of taking the EFAC supplements.  Travelled with my mother and took her out to dinner in the evening.  Was in / out of car around 10 times with all the places we went (most that I can remember).  Definitely tired by afternoon and sitting in the restaurant was difficult but still manageable.
9/29 – Bed at 11:15pm, up at 5:30 and back to bed at 6am.  Napped from 6-8:30am and 1:45 – 3:45pm.  Main issue with the shoulder blades and some with neck.  Right foot continues to swell up in the latter part of the morning.  Did a 30-second plank on the Wii Fit.
9/30 – Bed at 10:30pm, up at 12 and 5:45am and got up at 8am.  Napped from 1 – 2:30pm and felt lethargic afterwards.  Overall sore due to plank & low back.  Walked at 6pm to end of street and vacuumed in the evening.
10/1 – Bed at 11:15pm, up at 6:30am.  Napped from 1-2:30pm.  Overall sore and stiff in morning, afternoon nap helped.  Went to my tech meeting (1st time in over 2 months) at 6pm – 8pm (sitting on hard chairs still difficult) and walked it off for 30 minutes at 8pm.  Went to be exhausted.
10/2 – Bed at 10:15pm, up at 6:15am.  Napped from 8:30am – 9:30am and 12:30pm – 2pm.  Main issue is right hip / leg & mid-back.  Shoulders / neck better than a few days ago.  Overall stiffness as usual but better after naps.  Went to dinner and still hard to sit at a booth (or anything) at a restaurant.
10/3 – Bed at 10:45pm, up at 4 & 7am.  Napped from 10 – 11:30am and 2:45 – 4pm.  Right hip in the morning (twisted it weird while sleeping throughout night) but better late morning.  Most of the day felt tired and sore (like you do when you’re sick).  Don’t know if it was from the restaurant the day before (Barbecue Chopped Chicken salad at CPK) or because it rained all day.
10/4 – Bed at 11pm, up at 6am.  Napped from 8 – 9:30am and 2-4:30pm.  Stiff as usual with soreness at the tops of my shoulders, hips, and low-back.  Went to the pool at 10am for 20 minutes with a harder routine:  10 minutes treading with aqua jogger, 10 minutes of stretching / yoga, squats, push-ups and bicycle motions on the stairs.  Evening took a 15 minute walk.
10/5 – Bed at 11pm, up at 6:15am.  Napped from 8:45 – 10am and 1:30 – 4:30pm.  Predominant issues are left elbow (from sleeping incorrectly & the pool) along with general stiffness and body aches with a minor headache in the morning.  I still continue to wake up a lot from 1:30am – 6:15am but go right back to bed which is due to my body still not being able to stay in the same position too long.  I’m still too weak to sleep on my sides and I never feel good if I sleep more than an hour on my side (sides & arms hurt for 1/2 the day).  The neck is getting better range of motion up & down, side to side is seeing small improvement.  In the evening I had a 2/3 pound hamburger “salad” with a malt (which was heaven in a glass) and this gave me no adverse reactions.  I will continue pushing dairy to help gain some weight.  Sitting down is still very difficult at restaurants.  But I went to the movies and was uncomfortable for only a bit (getting up was hard the first few steps as usual).  I consider this a win because last movie I saw I was sitting up and back many times throughout the movie.
10/6 – Bed at 11pm, up at 5:15-5:30 and slept until 7:15am.  Napped from 2-3:15pm.  Slept straight through 11 – 4:15am without waking up.  Pain and stiffness generalized throughout body but nothing too noticeable.  Went to pool at 5:30pm for 20 minutes.
10/7 – Bed at 10:30pm, up at 6:30am.  Napped from 8-9:30am and 1:15 – 3pm.  Hips and neck hurt mainly to overdoing the pool exercises.  Woke up 1:30am to use the mason jar and then slept until 5:30am.  5:30am – 6:30am woke up many times.  Tried cheddar cheese and Breyer’s ice cream.  Short evening walk due to pains mostly throughout the day.
10/8 – Bed at 10:30pm, up at 6am.  Napped from 8:30 – 9:45am and 3:30 – 4:30pm.  Still sore and stiff due to the pool and possibly the cheese / ice cream.  Lower back was extra stiff and sore for some reason.  Starting to take short walks in the morning and took a walk down the street in the evening.  Health did improve after morning nap and in the afternoon.  More than ever I’m convinced that I need more sun as I just feel better when it’s out.  Saw the Rhumetologist (test results 10-3-13) and will be reporting the tests and info back soon.
10/9 – Bed at 10:30pm, up at 6:30am.  Napped from 7:30am -9am and 1:30pm to 2:30pm.  General motion & stiffness better.  Developed Iritis which is basically inflammation of the eye.  Symptoms include (and I felt) pressure, sensitivity to light, redness and soreness.  Included is what it looks like:

Iritis before & after

SOURCE

Had my mother come down to help me out and went to an Opthamologist in the afternoon to get the generic for Pred ForteCyclopentol.  If you are reading this somehow and develop Iritis GO TO THE OPHTHALMOLOGIST RIGHT AWAY.  Delaying the eye drops will only make things worse.  My Iritis was so bad I had to go to the doctor’s office blind and have her guide me to sit and move from one room to another.  Even in low light it was very painful and the eye exam was not easy.  Before I left, I requested & received blackout glasses and they have been very effective.    Rest of the day was low-light in the house, sleeping and keeping my eyes closed as much as possible – no TV, no electronics of any kind.  In the evening I walked down the block (20 min.) at 7:30pm.
10/10 – Bed at 10:30pm, up at 3:30am and then 7:15am.  Slept from 10 – 11:15am and 12:45pm – 1:45pm.  Iritis condition is much better but still quite sensitive to light.  Saw theOpthamologist and agreed the condition is better but to stay on the drops for another week.  General stiff & sore and still hard to get out of chairs.  Mid-day I rested 5-6pm and walked down the block at 9pm.  Drank Chardonnay the 1st time in weeks along with some ice cream – something rewarding for all the stuff I went through.
10/11 – Bed at 10:30pm, up at 6:15am.  Slept from 9:30am – 10:45am and 12-2:30pm.  Right eye slightly better than yesterday but still sensitive to light and developing headaches due to the medication and light.  I’m able to view the computer monitor a 1/2 hour in the morning at a time and 5-10 minutes at a time in the afternoon.  More sleeping and house still quite dark – Dracula would be happy here.  Evening went to a Whole Foods cooking class and was able to sit in the chair semi-comfortable.  Any other times in the past 4-5 months have been very uncomfortable and had to get up a few times.
10/12 – Bed at 10:45pm, up at 7am.  Slept from 10 – 11:15am and 2-4pm.  Stiff back, right eye sensitive to light but better than yesterday and can watch TV and travel outside the house.  Can tell body fluctuating in inflammation throughout the day and it becomes more prevalent after eating (confirming yet again my digestive system is still not in good shape).  Went for a walk down the block at 9:15am and at 6:30pm.  Got a care package from my friend George and lifted my spirits for the weekend.
10/13 – Bed at 11:45, 5:15am – 5:30am – 8:30am.  Napped from 10:15 – 11:30am & 3:30 – 5pm.  General stiffness in shoulder blades, neck, and back with soreness in hips.  Right eye cloudy due to meds along with some light sensitivity.  Walked for 20 min. at 5:30pm.  Out of B6ND supplement.
10/14 – Bed at 10:45pm, up from 5:45 – 6:15am and slept until 7:30am.  Napped from 1-2:30pm.  General stiffness in shoulder blades, neck, and back with soreness in hips.  Right eye cloudy due to meds along with some light sensitivity.  Shoulder blades got worse throughout day & need to go to pool.  I went for a 20 min. walk at 6:30pm.  Saw my Rheumatologist  and got a prescription for Humira which is a biologic medicine similar to Enbrel but is also FDA approved for Crohn’s disease.  Even though my inflammation test results are improving, I cannot keep living in this condition – needing 10+ hours of sleep a day (anemic), low weight (117 lbs. currently), weakness, and limitations of food intake along with the dangerous levels of high inflammation.  My hope is to be on Humira for under a year, keep fixing my root causes, and hopefully the LDN will be good enough for me to stay on.
10/15 – Bed at 10:30 – 7am, got up at 5am.  Napped from 1 – 2:15pm.  Right eye is better, general stiffness in back, and went the pool for exercise at 10:30am  to help out with the shoulders (1st time I could do that with light sensitivity and chlorine concerns).  Went for a 25 minute walk at 6:15pm.
10/16 – Bed at 11pm, up at 12:45am, slept until 7:30am.  Napped from 1 – 3:30pm.  Stiff mid-lower back and right eye still blurry from meds. 9:30am walked for 20 min.  Went to Whole Foods class in evening and had a stew that contained flour with the meat & dark beer within the sauce (containing wheat) which gave me a mini flare-up.  Usually I would have a flare-up for days, but this only lasted for a few hours.
10/17 – Bed at 10:30pm, up at 3am, slept until 7:30am.  Napped from 1:15 – 2:45pm.  General stiffness and soreness throughout with right eye cloudy.  Pool at 5:15pm for 10 minutes.  Pool is becoming too cold to swim (teeth chatter & purple fingernails), but need it for my range of motion.
10/18 – Bed at 10:30pm, up at 2am, slept until 7:30am.  Napped from 10:30 – 11:15am and 1:30 – 3pm.  General stiffness and soreness.  Past few day from 4:30am – 7:30am I’ve been on/off with sleep (but not enough to get out of bed).  Walked at 9:30am for 20 min.  To recap my conditions before going on Humira, I have / am:

  • 117lbs.
  • Rt eye inflamed (Iritis) and need to take drops (Pred Forte 5X/day & Cyclopentol 1/day)
  • Sitting in chair too long makes my body very stiff.
  • Stools loose
  • Very hard to squat down or bend over (can’t really do this unless I assist with holding onto something) to pick something up.
  • Fringe foods are more tolerated.  Started eating more dairy to see if I gain weight.
  • Grains / flours give me mini-flares.
  • Still have not tried bread or pasta as in the past I would get the worst flares from that.
  • Getting in/out of bed is still hard and painful and I need a rope to get me out of bed.
  • Pains are usually due to stiffness and not shooting pains as before.

10/19 – Bed at 10:45pm, up at 6:15am, back to bed from 7:15am – 9am.  Napped from 11am – 12:30pm & rested in bed for an hour in the evening.  Noticeable pains / stiffness in low-back, hips, left elbow and extra stiff and tired from going out to the movies last night plus riding in another person’s car (not SUV).  6:30pm did a 15 minute walk and went to Costco in the afternoon.
10/20 – Bed at 10:45am, up at 1:15am and 7:15am, slept until 8:45am.  Napped from 3:45 – 6pm.  My body was exhausted over the weekend and needed to sleep 12+ hours today.  Body was generally stiff from all the bed rest.  Did some shopping at the farmer’s market and Whole Foods.  Went for a 20 minute walk at 6:30pm.
10/21 – Bed at 10:45, up at 3:30am & then 7:30am.  Napped from 12:45pm – 2pm.  The sleep over the weekend helped out as I feel less inflamed & stiff which I need because I am in the middle of a lot of work right now.  My neck was noticeably more stiff throughout the day.
10/22 – Bed at 11:15pm, up at 6:45am.  Slept from 8:45am – 10:30am and 1:30pm – 2:45pm.  My left elbow was hurting as I slept wrong on it throughout the night.  Other common pains include the stiff back, shoulders, and right foot.  I made my sleep number bed harder to help with my neck.  Went for a 20 minute walk at 6pm.
10/23 – Bed at 10:30pm, up at 1:30, then 6:30am.  Napped from 12:45 – 2:30pm.  Noticeable areas include my sides (rib areas in front), shoulder areas, stiff lower back, neck, right eye (due to meds) and right foot.  The sides and shoulder issues are due to washing clothes yesterday.  Went for a 20 minute walk at 6:30pm.
10/24 – Bed at 10:30pm, up at 3:45am and then 7:30am.  Napped from 1 – 2:15pm.  Better than the past few days.  Same ailments as yesterday but seem to be half as stiff / sore in the morning.  My friend George visited me starting today and we took a walk 8:30pm for 20 minutes.  The evening was the coldest in many months and I could tell my body was very stiff during that walk.  This week has been quite a challenge with working as much as possible between my sleep, cooking, and dealing with getting my prescription (TB test negative took me an extra week of waiting plus another week with the prescription company & insurance validation – review info on 10/14/13).  I’ve been working so much I haven’t spent much time with George today and today was supposed to be the start of my mini-vacation.  Plus I saw my Opthamologist and need to keep taking the meds (Pred Forte 4X/day & Cyclopentol 1/day) which makes it harder to drive with artificial light & my eyes strain working at the computer due to the cloudiness.

After taking LDN for over 1 1/2 months I’ve concluded that it really does help bring down my symptoms of inflammation and could be helping my system regulate itself.  However, the process is too slow now and I am just too busy to get another Iritis attack, shooting pain problems, and the myriad of other issues I am dealing with.  My hope is to haveHumira take care of the bulk of my symptomatic problems while helping to fix my Crohn’s disease.  The LDN then helps regulate my body and, along with a healthy diet, will fix my root issues.  I also plan on continuing with my autoimmune doctor to find other root causes for my high levels of inflammation.


 Start of Taking Humira – Autoimmune Diary

10/25 – Bed at 10:30pm, up at 4:30am and then 7:15am.  Slept from 9-10am and rested from 1-2pm.  Woke up stiff & sore due to all the work I’m doing, doctors, insurance, etc.  Same old routine with the right foot, left elbow, back & shoulders along with the right eye cloudy from the meds.  I began taking Humira in the morning with the pen instead of taking with the syringe like I used to with Enbrel and it’s much easier to administer plus I only have to take one time every two weeks.  I was finally able to start my mini-vacation at 6pm (which is just the weekend + a little on Monday) by traveling up to Venice (1st time since March).  One great steak dinner & some Chardonnay later & I was beyond exhausted by 7pm…but very happy to be with my parents and George.
10/26 – Bed at 10:30pm, up at 4:45am, then 7:30am.  Napped from 3-4:30pm.  Noticeable areas of pain / stiffness are right foot, neck, low back & cloudiness in right eye due to meds. 1st day after taking Humira and I can already start to see the effects of the medication.  I feel less stiff when I woke up and my Yoga was easier to do in the morning.  I had a full sleep from 10:30pm – 4:45am & then it was on & off as usual.   Where it started to really shine was I could walk at the Ringling Museum for 2-3 hours.  And for lunch I had fries along with a Colada & grilled fish.  Normally this would flare me up, but it didn’t.  But I could notice my stomach not feeling so good for a few hours after that lunch.  By the afternoon I was exhausted but felt better after getting up.  Fajitas and margaritas in the evening with fringe foods with no flare-up and my stomach felt fine afterwards.  Lower back still stiff & hurting if I stay in a chair too long.  Shoulders / neck / mid-back OK throughout day but my sides (front rib areas) hurt a bit.
10/27 – Bed at 11:15pm, up at 5:15am and then 8am.  Napped from 11:30 – 1pm.  For 1 1/2 years, I dreamed of what arrived today. Woke up much easier and my pain & stiffness is much less.  Neck still limited left & right, but better up & down motion.  Right eye cloudy due to meds.  Went to the cold pool and hot tub (Russian bath style but not as bad as this) at 9:30am for 20 minutes.  Drove back to Naples, cooked dinner for me & three friends & no flare-ups.  Prior to taking LDN, I could not do it.  While on LDN alone, I could do it, but would need help from my friends to cook / clean while I rested.  Today, no problem.
10/28 – Bed at 11:15pm, up at 1pm, then 6:30am, then 8:30am.  Tried to nap in the afternoon but too much to do & phone calls.  Neck range same as yesterday + shoulders & low-back a bit stiff.  Right eye cloudy with meds, right foot inflamed & hips hurt.  I can now get out of my own bed without using the rope!  In the morning was able to do a Plank for 30 seconds and got up much easier than I did trying this on 9/29.  Bending down to put dishes away is better but still cannot pick stuff off the floor.  Dressing myself takes much less time and is easier to do (feels kind of like a joke now to do).  10:30am walked around the entire neighborhood block for the first time in over a year.  6:15pm walked down the end of the street and took 15 minutes, not 20 minutes like before.
10/29 – Bed at 11pm, up at 6:30am.  Napped from 2:30pm – 3:30pm.  1st time I didn’t get up in the middle of the night.  Looks like my adrenals are getting back to normal now.  Noticeable areas are right eye (meds), right foot but better than yesterday.  8:30pm walked down the street for 15 minutes.  Lower back sore in the evening (probably due to plank yesterday).
10/30 – Bed at 11:15pm, up at 6:15am & napped from 3-4pm.  Waking up with low back stiffness at 3 out of 10.  Neck is still 4 out of 10 left to right & 3 out of 10 up & down.  My stools have pretty much normalized at this point and my weight is now 119 1/2 lbs.  I seem to gain a little over 1/2 lb. each day since taking the meds.  8am and & 6pm walked down the end of the road.
10/31 – Bed at 11:45pm, up at 2am, then 8:15am.  Napped from 1:30pm – 3:15pm.  Shoulder blades, neck movement from side to side, and right eye cloudiness / light sensitive (due to medication) are the main issues;  minor stiffness throughout & low-back pain.  Today I helped out some kids for Halloween and was able to hold onto bags of candy for a long time along with a 2 hour walk.  Stayed out past midnight without issue.
Week 2 (11/1 – 11/7) – Sleep continues to be getting up 1-2 times per night along with mid-day naps for most days.  Noticeable issues throughout the week include pain / stiffness in shoulder blades, neck movement from side to side, and right eye cloudiness / light sensitive (due to medication).  I took a few walks in the evening and was able to travel to multiple stores without issue until the end of the week when I started to develop pain in my right hip.  Sleep was also becoming an issue (developed nightmares on 11/2) as I started working 12+ hour days for my company CGschool (setting up events in Boston & San Francisco).  Back was also stiffer as it progressed to the evening due to all the sitting & work I had to do.  Without the Humira, none of this would have been possible.
Week 3 (11/8 – 11/14) – Sleep continues to be getting up 1-2 times per night  along with mid-day naps for most days.  Beginning of the week, the right hip was worse (went from 2 out of 10 to 6-7 out of 10 on pain scale) and was due to the workload / sitting too long / walking too far at night / new exercises I would try on the Wii Fit (especially ones balancing on one leg).  Other noticeable issues throughout the week include neck stiffness from side to side, some shoulder blade pain (probably due to exercises and sitting too long in the chair) and right eye cloudiness / light sensitive (due to medication).  Stomach issues arose in the early week due to gas & trying fringe foods (dairy, crackers).  When I started Humira, I was at 116 lbs.  Now I am up to 124.5 lbs. (+8 lbs.).  11/8 was a long day & had to fix a major issue for CGschool (was up until 2am).  Weekend ate at Roy’s with no issue as they were very accommodating to my food sensitivities.  Mid-back continued to hurt along with hip & knew I had to go to the pool.  Did a hard workout on 11/10 in the pool (as I need to build strength) which helped my hip heal itself throughout the week.  As a side note, if I did not take Humira, my pain would be a 9 out of 10 at this point.  End of week was getting better as my responsibilities were getting less – still  needed to do 12 hour days for San Francisco class.
Week 4 (11/15 – 11/21) – Sleep continues to be getting up once per night  along with mid-day naps for most days.  Hips bad in beginning of week healed up mid-end of week (as long as I didn’t do anything to stand on one leg like Yoga exercises or getting my pants on one leg at a time).  Right eye continued to get better and 11/19 Opthamologist gave me the OK to stop the meds altogether on 11/24.  Range of neck motion getting better but still noticeable and some stiffness in the back through mid-week.  Travelling around town again was easy to do.  Workouts once at the pool (11/16), Wii Fit 1-minute planks worked and started push-ups / side planks on 11/19 (failed at 5th & 6th rep), started downward dog Yoga pose on 11/22, and walked most evenings.
Week 5 (11/22 – 11/28) – Sleep continues to be getting up once per night  along with mid-day naps for most days.  As I continue to get stronger, I still feel noticeable pains (probably due to workouts) in the shoulder blades, neck, and back (2-3 out of 10); right hip continues to be fine.  My right eye cleared up by 11/25 and my weight is now 128 lbs (+4 lbs. from 2 weeks ago).  Starting to get harder to go to sleep due to increased levels of energy (my body was so used to being with so little energy before).  Went ballroom dancing 11/24 and felt in right hip again, but cleared up same day / next day.  Was able to travel to Venice (it’s been over 6 months since I have been able to leave the Naples area without assistance) for Thanksgiving.  Had small amounts of stuffing & lots of mashed potatoes & gravy and I could tell my body wanted more veggies by end of weekend – still no flare-ups.
Week 6 (11/29 – 12/5) – Beginning of week, I needed to get up once per night during sleep but by end of week I slept straight through.  My issue is getting to sleep due to adjusting to new energy.  Shoulder blades / back / neck (side to side) are 2-3 out of 10 due to all the sitting, travelling and eating (eating is also making my facial complexion worse) Thanksgiving leftovers (not to mention the pumpkin pie).  11/30 had my first major workout at my parent’s gym in Venice (1/2 hour).  12/4 did another major workout (both times were upper body – biceps, triceps, chest, abs) and also able to walk around the block with no issue at all (finished in less than 25 minutes; used to take me 40 minutes).  I’m also starting to be able to do short bursts of jogging / running since I lost the ability to run.  12/3 – travelled to Fort Myers and back in the evening time and traveled a few places – no issues.  Some days during the later part of the week show no significant pain / stiffness issues.
Week 7 (12/6 – 12/12) – Tested my body’s endurance at the beginning of the week – 12/6 took 3 hours of ballroom dancing lessons, 12/7 2 hours of social ballroom dancing, 12/8 one of my hardest workouts + laps + 2 minutes treading water at the pool for 1/2 hour straight; did it all without issue.  Upper workout mid-week without issue but felt it on 12/12. All together I worked out every day and felt some pains, but those are the pains of getting stronger – big difference than a flare-up due to inflammation. Neck range got better throughout the week (was at 3 out of 10, now 1.5 out of 10).  As for food, I won’t go back to Pei Wei as they do something that does not agree with my system (had the Thai Chicken coconut curry) & am learning to avoid Chinese stir-fry style meals now.  I also learned that I should not do more than a 1/2 a cup of black beans as anymore doesn’t work well with my system.

My Flu Autoimmune Diary

My flu lasted from the evening of 12/22 – 12/28, 12/23 being the worst day (slept for 18 hours with 2-hour naps & getting up for 5-15 minutes in between) and Christmas Day being my psychological low point (home alone and sick sucks).  I then had a lingering cough which bruised my rib from 12/22 – 1/6.  My ribs are finally healing on 1/10 but may take another week to fully recover.

Pushing My Autoimmune Limits and Preventing the Flu

As discussed in my previous post on the results (benefits & side effects) of taking Humira, I went on a cruise to test my autoimmune system now that my inflammation is back to normal.

caribbean cruise - half moon cay

Caribbean Cruise – Paradise on the Private Island Half Moon Cay

Pushing My Autoimmune Limits and Getting the Flu

I went on a 4-day cruise and I could tell the night before I was leaving that I got the flu. Last year I went on a similar 4-day cruise, was not taking Humira (was taking Prednisone) and did not get the flu.  Here are the main reasons why I believe I got the flu this time:

  • Previous cruise I was very strict with my diet and ate only a few fringe foods.  This time I ate almost anything I wanted + lots of new foods I haven’t tried in years except for bread / grains / flours.  I wasn’t loading up on dairy, yeast-based products, etc., but lots of the food I ate (both at the buffet and even the upscale Chinese restaurant on the last day) contained many hidden ingredients.
  • The 2013-2014 flu is affecting more young adults than the 2012-2013 did.
  • The ship was sold out with 2,104 passengers; some from all over the world.  Even with all the sanitizer I used on board, a boat can be like a giant petri dish.
  • My immune system may have been lowered since I needed to take Humira on the 2nd day of my trip. [Flu requirements when taking Humira]
  • I was much more active this trip than last year.  4-5 hours of walking in Key West, 4-5 hours (all outside) on Half Moon Cay (played volleyball 1st time in years and walked around most of the island).  By the end of the third evening (Half Moon Cay) I saw that I was much more dehydrated that I thought.  The only downtime I had was the day of the Bahamas, but danced most of the evening until 1-2am in the morning.
  • Interacted much more with people and danced with many new people.  While this makes for a fun time, just one of those people could of had the flu or touched someone who had the flu & was passing it on.
  • I did not use my air mattress like last trip as I was able to sleep on the standard bed.  However, I did not get full nights of sleep and rarely took any daytime naps.

Preventing the Flu Before and After with an Autoimmune Disease

In the future, here are the steps I suggest people take preventing the flu before their trip with an autoimmune disease while on Humira (or any other biologic):

  • Although there is a lot of temptation out there, limit the types of foods to “simple foods”.  These foods are typically made of a few ingredients and don’t contain any fillers.  For example a meal like steak, rice, and broccoli would be fine.  But eggs benedict might not due to the extra dairy and possible flour used as a filler for the sauce(s).
  • If possible, don’t go on vacations with a lot of people confined in a space.  This one is really hard because that would restrict you from airplanes, cruises, or anything that travels with more than 20 people.  To help prevent this I suggest the next step…
  • Take lots of immune boosters.  Vitamin D3, magnesium, zinc, and echinacea are a few supplements to bring along and take at least a few days before you start your trip.
  • Get in the habit of washing your hands for at least 20-30 seconds per the requirements of the CDC.  Hum the “Happy Birthday” song while washing your hands to cover the 20-30 second time.
  • Take your biologic medicine at least 3-4 days prior to the trip.  If you need to take dosage twice a week, consider the larger dose sizes available (this mainly applies to those taking Enbrel).
  • Make sure you are getting plenty of rest prior to the trip.  This may be very difficult since most of us are finishing projects prior to the vacation.  But really try to get a solid 8 hours of sleep per night.  Naps in the afternoon a plus.

What if you got the flu after the trip or want to prevent the flu from sneaking in?  Here are steps I suggest people with an autoimmune disease take after their trip and especially those who got the flu.

  • Continue to take lots of immune boosters like vitamin D3, magnesium, zinc, and echinacea.
  • Drink lots of juice (even better to juice your own orange juice and other juices) to boost your Vitamin C.
  • Eat homemade chicken soup.  I have this excellent recipe for mom’s homemade chicken soup that uses mostly organic ingredients.  The broth from the chicken bones help boost your immune system and other key nutrients.
  • Stay away from people.  No one wants your flu and being active around people is not going to improve your health.
  • Drink hot teas to help soothe your throat.  Just make sure there is no caffeine in it.  I was the unfortunate recipient of drinking 3 hot teas on one day and the literature stated “naturally decaffeinated”.  Needless to say, I could not sleep till 3am.  Not fun.
  • The cold weather can not only get you the cold, but stay there.  More information from this ASAP science video below about how cold and humidity play a role in developing / continuation of a cold.
  • Try not to take your biologic medicine 3-4 days after your trip.  If you need to take dosage twice a week, consider the larger dose sizes available (this mainly applies to those taking Enbrel).
  • Consider using a diffuser with essential oils to purify the air around you.  Open up doors / windows from time to time to flush out the stagnant air.
  • Wash your hands for at least 20-30 seconds per the requirements of the CDC.  Hum the “Happy Birthday” song while washing your hands to cover the 20-30 second time.

My Flu Diary

My flu lasted from the evening of 12/22 – 12/28, 12/23 being the worst day (slept for 18 hours with 2-hour naps & getting up for 5-15 minutes in between) and Christmas Day being my psychological low point (home alone and sick sucks).  I then had a lingering cough which bruised my rib from 12/22 – 1/6.  My ribs are finally healing on 1/10 but may take another week to fully recover.

Have a suggestion on combating the flu before and after with an autoimmune disease?  Feel free to comment below & I’ll add it into this blog post.

Humira – My Autoimmune Benefits, Side Effects, and Results

As discussed in my previous post about Iritis, I’ve had enough of playing the chronic inflammation game and wanted my life back.  I discussed this over with my Rheumatologist and we both agreed that Humira would be my choice of biologic medication. Not only would Humira block my chronic inflammation, but it is FDA approved to treat Crohn’s disease – one of my root causes.  To recap, let’s look over my rates / percentages of health since I got off Enbrel for good on February 7th 2012:

Rate of My SED and CRP Rates of Inflammation

My SED and CRP Rates of Inflammation from Dec. 2011 – Dec. 2013 (2 Years).  Note the normal rates for both are under 15.

  • 10-20% Health – Mid-March 2012:  Enbrel out of system, could barely tie my own shoes.  Life unbearable at times, but parents lovingly got me through as my body was slowly healing.  Many symptoms developed at this time.  Rates of Inflammation:  CRP spiked from 9 in Dec. 2011 to 142.8.  SED rate at 101.
  • 20-40% Health – July 2012:  Eating and learning to cook a healthier lifestyle improved my condition, but times still unbearable and started a regimen of ibuprofen to function in my daily life.  Started many tests to determine root causes of my issues.
  • 40-50% Health with Bursts:  December 2012 – Found major root causes from the tests I took.  Symptoms / issues pointed to Crohn’s Disease / IBS / Ulcerative Colitis (Which might have developed due to the ibuprofen I was taking – Mayo Clinic states:  “Don’t use ibuprofen (Advil, Motrin, others), naproxen (Aleve) or aspirin. These are likely to make your symptoms worse.”).  My bursts were coming from taking Prednisone (hard to sleep taking this) and going off ibuprofen.
  • 40-60% Health: April 2013Detoxification off of meds and supplements.
  • 30 – 50% Health:  June – Early September 2013:  Recommendations from an autoimmune specialist put me on a new set of supplements and tests.  Although I reverted back to my lowest points in 2013 (I needed other people to help drive me to places and did not leave the house sometimes for a weeks), I did find root issues:  Mold / fungus in my house, oxidative stress, and leaky gut syndrome (nutrition dysfunction).  Taking medications helped the root cause, but made my system weak.  Supplementation either had little help or was harmful.
  • 50 – 70% Health – Mid-Late September 2013: Introduction of Low Dose Naltrexone (LDN).  With low cost and minimal side effects, LDN boosted my health around 20% + getting off all the “fixing the root cause” medication & supplements.
  • 70 – 85% Health – November / December 2013:  Along with the Low Dose Naltrexone (LDN), I started taking Humira due to my Iritis attack.  Within the 1st 3 days after Humira I saw significant consistent improvement.  Increasing weight along with exercise / Yoga has continued to increase my health.  In December, back to a “normal” weight, Iron levels back to normal (no anemia), and have more energy than I ever had in my 30s.  Rates of Inflammation:  CRP rate at 3.3 (better than when I was on Enbrel and had a CRP of 9.5) and SED rate of 4 (review latest test).

What is Humira?

With autoimmune diseases, your body produces too much of a protein called TNF.  This TNF then triggers an inflammation response that goes throughout the body.  Humira is designed to block the receptors that hold TNF as explained in this video.

humira-pen-figure-a-pen-image

Humira is used by injecting the grey cap (Cap #1) into your skin (I inject into my thigh) once every 2 weeks.  Since Crohn’s disease deals with the digestive system, the Humira injection does not interfere like a pill would.

My Humira Results

If you examine my comprehensive autoimmune blood tests, look for the results of my SED rate and CRP (C-Reactive Protein) – they are both markers of inflammation.  Normal ranges for SED rate are 0-15 and CRP are 0 – 4.9.  In April 2012, my SED rate was 101 and CRP was 142.8; abnormal and dangerously high.  After taking Humira, Low Dose Naltrexone (LDN) and all that I’ve learned throughout my journey, my comprehensive autoimmune blood test in mid-November shows a SED rate of 4 and a CRP rate of 3.3; a vast improvement.

Here is an update on autoimmune symptoms listed in my last post about Iritis:

  • My weight on 12-13-13

    My current weight of 134.5 lbs. on 12-13-13 (Wii Fit Plus).

  • Continued to lose weight and at my lowest was 116 pounds (originally 158 lbs.)
    My weight starting Humira was 116 lbs. and has increased to 134.5 lbs (roughly 1 1/2 months time).
  • Continued nutrient malabsorption Current increase in weight and ability to eat foods I could not before prove I am absorbing food.
  • Fatigue / Anemia (usually sleeping twice a day & needing 10+ hours of sleep / day) I no longer need to take naps and 8 hours a night of sleep is typical (most of the time without the need to get up in the middle of the night).  Review my Iron Level tests prior to taking Humira and after taking Humira.
  • Sitting in chair too long makes my body very stiff.  I can sit in the chair for hours although my back gets 2-3 out of 10 in stiffness…I can live with that!
  • Stools loose.  No problem now, I can poop like a champ!
  • Very hard to squat down or bend over (can’t really do this unless I assist with holding onto something) to pick something up.  I can now do a Sun Salutation in Yoga, and I can bend over and pick things up off the floor.
  • Flare-ups from foods, sometime even safe foods.  No flare-ups because the Humira blocks the receptors that cause the inflammation (but the process still happens).  I still avoid the foods that caused me to flare up the most – breads, grains & flour mainly.
  • Get cold quickly along with poor circulation & purple fingers (Raynaud’s Syndrome) – I still get this, but less noticeable.
  • Weak body: Need a rope to get out of bed, can only go to the pool for 10 minutes, no gym workouts, etc.  On 12/4 was my 1st major (45 minute) workout on my chest, biceps & triceps.  I can now go dancing for hours and walk around the block with no issues.  Driving is also so much easier.  Did I mention that I removed the rope from my bed (it was the only way I could get out of bed for more than a year) a few weeks ago?  That was a great moment.
  • But the last and final straw was developing Iritis on 10/9/13.  6 Ophthalmologist visits over 1 1/2 month span (1 month of which my right eye was dilated the entire time), it’s all cleared up.  The medicine made my condition much better after the 1st day.

Humira Side Effects

Humira, like all biologic medications, can have serious (even deadly) side effects caused by fungus, bacteria, and virus infections.  Liver infections and psoriasis has also showed up in patients taking Humira.  My symptoms include increase sneezing and my ability to fight infections.  The LDN & eating a healthy lifestyle help my immune system and could have a better chance at fighting infections.  Finally, and I know this might sound strange, is that I have to adjust to my new level of energy.  It’s hard to go to sleep because I don’t feel like I need to (but when I lie down for 10 minutes I do sleep – kind of feel like a kid again).  When I wake up, I’m up and need to do activities if I wake up too early.

Future Plans – Finding the Autoimmune Root Cause

Conclusion

Two words:  “I’m back!”

Thank you to those who have continued to pray for me.  Please focus your prayers on having me find my root cause(s) and for the other millions of people to find their root cause(s) of inflammation.


Diary – Getting Back on Humira

Since most of the major gains were made in the first week, I will only supply a daily diary for the first seven (7) days and then a weekly diary afterwards.

10/25 – Bed at 10:30pm, up at 4:30am and then 7:15am.  Slept from 9-10am and rested from 1-2pm.  Woke up stiff & sore due to all the work I’m doing, doctors, insurance, etc.  Same old routine with the right foot, left elbow, back & shoulders along with the right eye cloudy from the meds.  I began taking Humira in the morning with the pen instead of taking with the syringe like I used to with Enbrel and it’s much easier to administer plus I only have to take one time every two weeks.  I was finally able to start my mini-vacation at 6pm (which is just the weekend + a little on Monday) by traveling up to Venice (1st time since March).  One great steak dinner & some Chardonnay later & I was beyond exhausted by 7pm…but very happy to be with my parents and George.
10/26 – Bed at 10:30pm, up at 4:45am, then 7:30am.  Napped from 3-4:30pm.  Noticeable areas of pain / stiffness are right foot, neck, low back & cloudiness in right eye due to meds. 1st day after taking Humira and I can already start to see the effects of the medication.  I feel less stiff when I woke up and my Yoga was easier to do in the morning.  I had a full sleep from 10:30pm – 4:45am & then it was on & off as usual.   Where it started to really shine was I could walk at the Ringling Museum for 2-3 hours.  And for lunch I had fries along with a Colada & grilled fish.  Normally this would flare me up, but it didn’t.  But I could notice my stomach not feeling so good for a few hours after that lunch.  By the afternoon I was exhausted but felt better after getting up.  Fajitas and margaritas in the evening with fringe foods with no flare-up and my stomach felt fine afterwards.  Lower back still stiff & hurting if I stay in a chair too long.  Shoulders / neck / mid-back OK throughout day but my sides (front rib areas) hurt a bit.
10/27 – Bed at 11:15pm, up at 5:15am and then 8am.  Napped from 11:30 – 1pm.  For 1 1/2 years, I dreamed of what arrived today. Woke up much easier and my pain & stiffness is much less.  Neck still limited left & right, but better up & down motion.  Right eye cloudy due to meds.  Went to the cold pool and hot tub (Russian bath style but not as bad as this) at 9:30am for 20 minutes.  Drove back to Naples, cooked dinner for me & three friends & no flare-ups.  Prior to taking LDN, I could not do it.  While on LDN alone, I could do it, but would need help from my friends to cook / clean while I rested.  Today, no problem.
10/28 – Bed at 11:15pm, up at 1pm, then 6:30am, then 8:30am.  Tried to nap in the afternoon but too much to do & phone calls.  Neck range same as yesterday + shoulders & low-back a bit stiff.  Right eye cloudy with meds, right foot inflamed & hips hurt.  I can now get out of my own bed without using the rope!  In the morning was able to do a Plank for 30 seconds and got up much easier than I did trying this on 9/29.  Bending down to put dishes away is better but still cannot pick stuff off the floor.  Dressing myself takes much less time and is easier to do (feels kind of like a joke now to do).  10:30am walked around the entire neighborhood block for the first time in over a year.  6:15pm walked down the end of the street and took 15 minutes, not 20 minutes like before.
10/29 – Bed at 11pm, up at 6:30am.  Napped from 2:30pm – 3:30pm.  1st time I didn’t get up in the middle of the night.  Looks like my adrenals are getting back to normal now.  Noticeable areas are right eye (meds), right foot but better than yesterday.  8:30pm walked down the street for 15 minutes.  Lower back sore in the evening (probably due to plank yesterday).
10/30 – Bed at 11:15pm, up at 6:15am & napped from 3-4pm.  Waking up with low back stiffness at 3 out of 10.  Neck is still 4 out of 10 left to right & 3 out of 10 up & down.  My stools have pretty much normalized at this point and my weight is now 119 1/2 lbs.  I seem to gain a little over 1/2 lb. each day since taking the meds.  8am and & 6pm walked down the end of the road.
10/31 – Bed at 11:45pm, up at 2am, then 8:15am.  Napped from 1:30pm – 3:15pm.  Shoulder blades, neck movement from side to side, and right eye cloudiness / light sensitive (due to medication) are the main issues;  minor stiffness throughout & low-back pain.  Today I helped out some kids for Halloween and was able to hold onto bags of candy for a long time along with a 2 hour walk.  Stayed out past midnight without issue.
Week 2 (11/1 – 11/7) – Sleep continues to be getting up 1-2 times per night along with mid-day naps for most days.  Noticeable issues throughout the week include pain / stiffness in shoulder blades, neck movement from side to side, and right eye cloudiness / light sensitive (due to medication).  I took a few walks in the evening and was able to travel to multiple stores without issue until the end of the week when I started to develop pain in my right hip.  Sleep was also becoming an issue (developed nightmares on 11/2) as I started working 12+ hour days for my company CGschool (setting up events in Boston & San Francisco).  Back was also stiffer as it progressed to the evening due to all the sitting & work I had to do.  Without the Humira, none of this would have been possible.
Week 3 (11/8 – 11/14) – Sleep continues to be getting up 1-2 times per night  along with mid-day naps for most days.  Beginning of the week, the right hip was worse (went from 2 out of 10 to 6-7 out of 10 on pain scale) and was due to the workload / sitting too long / walking too far at night / new exercises I would try on the Wii Fit (especially ones balancing on one leg).  Other noticeable issues throughout the week include neck stiffness from side to side, some shoulder blade pain (probably due to exercises and sitting too long in the chair) and right eye cloudiness / light sensitive (due to medication).  Stomach issues arose in the early week due to gas & trying fringe foods (dairy, crackers).  When I started Humira, I was at 116 lbs.  Now I am up to 124.5 lbs. (+8 lbs.).  11/8 was a long day & had to fix a major issue for CGschool (was up until 2am).  Weekend ate at Roy’s with no issue as they were very accommodating to my food sensitivities.  Mid-back continued to hurt along with hip & knew I had to go to the pool.  Did a hard workout on 11/10 in the pool (as I need to build strength) which helped my hip heal itself throughout the week.  As a side note, if I did not take Humira, my pain would be a 9 out of 10 at this point.  End of week was getting better as my responsibilities were getting less – still  needed to do 12 hour days for San Francisco class.
Week 4 (11/15 – 11/21) – Sleep continues to be getting up once per night  along with mid-day naps for most days.  Hips bad in beginning of week healed up mid-end of week (as long as I didn’t do anything to stand on one leg like Yoga exercises or getting my pants on one leg at a time).  Right eye continued to get better and 11/19 Opthamologist gave me the OK to stop the meds altogether on 11/24.  Range of neck motion getting better but still noticeable and some stiffness in the back through mid-week.  Travelling around town again was easy to do.  Workouts once at the pool (11/16), Wii Fit 1-minute planks worked and started push-ups / side planks on 11/19 (failed at 5th & 6th rep), started downward dog Yoga pose on 11/22, and walked most evenings.
Week 5 (11/22 – 11/28) – Sleep continues to be getting up once per night  along with mid-day naps for most days.  As I continue to get stronger, I still feel noticeable pains (probably due to workouts) in the shoulder blades, neck, and back (2-3 out of 10); right hip continues to be fine.  My right eye cleared up by 11/25 and my weight is now 128 lbs (+4 lbs. from 2 weeks ago).  Starting to get harder to go to sleep due to increased levels of energy (my body was so used to being with so little energy before).  Went ballroom dancing 11/24 and felt in right hip again, but cleared up same day / next day.  Was able to travel to Venice (it’s been over 6 months since I have been able to leave the Naples area without assistance) for Thanksgiving.  Had small amounts of stuffing & lots of mashed potatoes & gravy and I could tell my body wanted more veggies by end of weekend – still no flare-ups.
Week 6 (11/29 – 12/5) – Beginning of week, I needed to get up once per night during sleep but by end of week I slept straight through.  My issue is getting to sleep due to adjusting to new energy.  Shoulder blades / back / neck (side to side) are 2-3 out of 10 due to all the sitting, travelling and eating (eating is also making my facial complexion worse) Thanksgiving leftovers (not to mention the pumpkin pie).  11/30 had my first major workout at my parent’s gym in Venice (1/2 hour).  12/4 did another major workout (both times were upper body – biceps, triceps, chest, abs) and also able to walk around the block with no issue at all (finished in less than 25 minutes; used to take me 40 minutes).  I’m also starting to be able to do short bursts of jogging / running since I lost the ability to run.  12/3 – travelled to Fort Myers and back in the evening time and traveled a few places – no issues.  Some days during the later part of the week show no significant pain / stiffness issues.
Week 7 (12/6 – 12/12) – Tested my body’s endurance at the beginning of the week – 12/6 took 3 hours of ballroom dancing lessons, 12/7 2 hours of social ballroom dancing, 12/8 one of my hardest workouts + laps + 2 minutes treading water at the pool for 1/2 hour straight; did it all without issue.  Upper workout mid-week without issue but felt it on 12/12. All together I worked out every day and felt some pains, but those are the pains of getting stronger – big difference than a flare-up due to inflammation. Neck range got better throughout the week (was at 3 out of 10, now 1.5 out of 10).  As for food, I won’t go back to Pei Wei as they do something that does not agree with my system (had the Thai Chicken coconut curry) & am learning to avoid Chinese stir-fry style meals now.  I also learned that I should not do more than a 1/2 a cup of black beans as anymore doesn’t work well with my system.