Getting to the root cause of an autoimmune disease can be very costly, time-consuming and tricky. But I may have found one of my main ones, mold / fungus. Before I begin, let’s start with the side effects of the autoimmune suppressing medicine I took for over 9 years, Enbrel:
Taken from Enbrel and RxList Web Sites: “Patients treated with ENBREL are at increased risk for developing serious infections that may lead to hospitalization or death…Invasive fungal infections, including histoplasmosis, coccidioidomycosis, candidiasis, aspergillosis, blastomycosis, and pneumocystosis. Patients with histoplasmosis or other invasive fungal infections may present with disseminated, rather than localized, disease.” Overall, I am susceptible to fungus / mold and it may lead to death. Update 8/1/13 – If you are concerned about this, read more on the fungal fix.
Environmental mold can seriously harm and kill you. According to the CDC, “prolonged exposure to high levels of mold (and some bacterial species) can produce an immune-mediated disease known as hypersensitivity pneumonitis….In addition, exposure to beta glucans might have an inflammatory effect in the respiratory system.” Beta glucans are particularly troublesome for me since they are found in the same foods / ingredients I cannot eat without flaring up (grains, barley, brewer’s yeast, etc.).
In the first two shots, you will see my old air conditioning unit filled with mold due to age and the corrosion of the coil. The 3rd photo shows the new unit with a U/V light that is always on and kills any mold that tries to grow within the air handler.
On 7/3 I had an inspection done by And Services. Upon inspection I saw an outbreak of mold within the air handler of the air conditioning unit. I had previous inspections done in 2012, but no one had warned me of the mold and I may have been breathing in this toxic air for years. Fortunately this company did an amazing job putting in my new unit the next day – on the 4th of July! The new air handler includes an always-on U/V light that kills any mold that tries to go in. As for any existing mold, they piped in Biocide into the return air vent which then goes through all existing vents. Lastly, I had the inspector double-check and make sure there was no mold in all of the attic.
Now we know I’m sensitive to mold / fungus with Enbrel and I have been breathing this in (possibly for years), but how could I confirm it? Next up – Gut Ecology Profile.
Within the same hour as the initial inspection on 7/3, I was emailed the Metametrix Gut Ecology Test Results. Coincidence? No. This was one of my “God-Intervening” moments in my life since I had been waiting for this test for a month and the timing of this inspection was planned just a few days prior.
If you look at the test results, you will see an area in red on page two that states I have a Yeast / Fungi infection at +2; +3 would mean I was almost dead since the results are exponential (specific strain on the test is Saccharomyces). The only other important thing on this test is my Bifidobacter (good bacteria) is low and am taking a supplement for that.
How to Fix the Fungus / Mold
Dr. Mark Hyman, a well-known Functional Medicine doctor, states six ways to kill fungus:
1. Address predisposing factors. Don’t take antibiotics, steroids, or hormones unless absolutely medically necessary.
2. Eat a diet that doesn’t feed yeast in the gut (low sugar and refined carbohydrates, and low mold and yeast in food.
3. Use probiotics to repopulate the gut with healthy bacteria (my water kefir & Bifidobacter supplement).
4. Take antifungal herbs and medications when indicated ***
5. Identify potential environmental toxic fungi and molds in your home or workplace (changing my A/C unit & air handler).
6. Reduce stress.
*** Since the antifungal therapies with essential oils did not work for me, my D.O. / doctor has prescribed an alternative to Nystatin (as stated in Dr. Hyman’s article) called Clotrimazole (generic for Mycelex). I need to take it for 10 days, 5 lozenges per day. Below is a record of my health each day while on Clotrimazole (10 MG lozenges 5 times a day for 10 days):
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.
DIARY CONTINUED at Leaky Gut Absorption Test Blog Post –>
Next Steps on Fixing the Fungus / Mold
1. Since neither my D.O. nor my autoimmune doctor know of any tests for fungal infections (besides the Gut Ecology test), I talked with Amgen / Wyeth (the makers of Enbrel) and they suggest a specialist like an Infectious Disease doctor. On 8/1/13 I saw Christine S Forszpaniak, MD and she states that anyone not severely sick (vomiting, respiratory, etc.) usually does not take the tests for histoplasmosis, coccidioidomycosis, candidiasis, aspergillosis, blastomycosis, and pneumocystosis. When these tests are done on people who are “healthier”, they only confirm whether antibodies have been made whenever I was in contact with one of these fungi. Even if there is a confirmation, there can be false-positives and the results can only lead to academic at best. Only when you feel ill should you take the medication for the fungal infections. As for my test results confirming Saccharomyces, taking Nystatin & Clotrimazole along with low sugar diet is the best protocol that can be done. To recap, take the Gut Ecology test and then take Nystatin & Clotrimazole along with low sugar diet for the Saccharomyces. Only request an Infectious Disease doctor if you are very sick and have the symptoms of the fungal infections.
2. Complete Metabolic Panel (CMP) to make sure this medication isn’t taxing my liver too much (it’s the main side effect of this drug).
3. Upon finishing the medication (7/12 – 7/31), I will be taking supplements to start fixing my intestinal lining. Please read my next blog post on leaky gut permeability for details and daily diary.