Here I chart my TSW progress week by week since ceasing all topical and oral steroid use on November 15, 2016.
Week 1 – Body and forehead began flaring up. Began seeing a new traditional Chinese medicine (TCM) doctor who also does acupuncture. Commenced wheat-free diet. Began waking up between 1am-3am every night.
Week 2 – Full body flare became severe, heavy flaking. Itching was intense and bone-deep. Second week of seeing TCM doctor — seems he does not know about TSW and thinks it’s just regular eczema. Conducted a three-day bone-broth fast and cut out grains thereafter.
Week 3 – Flaring and itching still severe, but stabilizing. Began taking new TCM from a recommended practitioner who could tell I had a very inflamed gut just from looking at my tongue. Began taking TCM powder for skin and stomach.
Week 4 – Began seeing new acupuncturist. Commenced moisturizer withdrawal. Intense peeling of forehead and eye area.
Week 5 – Saw acupuncturist again who said my condition had improved. In addition to existing TCM, also began to take an additional powder for the liver and kidneys in case the detox load was too heavy and was causing the insomnia (still waking up between 1am-3am every night).
Week 6 – Right elbow suddenly became inflamed and swollen. Took non-steroidal anti-inflammatories and stuck on a patch. Commenced two-week family trip to Japan.
Weeks 7 & 8 – Relaxing time in Japan appeared to have helped with progress. Forehead flaking significantly improved as body redness reduced. Elbow mostly recovered.
Week 9 – Decided to try La Roche Lipikar Baume moisturizer upon return from Japan — big mistake — causing possible adverse reaction. Entire body flared up with an intense itch; scratching set back progress by at least two weeks. Sleep still poor, only get 2-5 hours a night. Also began feeling nerve pain in torso and arms. Began taking L-Glutamine for potential leaky gut and MSM for skin.
Week 10 – Still not recovered from Week 9 flare. Nerve pain slightly improved. Sleep as bad as ever and could be affecting recovery. Swollen gums near left molar on two separate occasions.
Weeks 11 to 14 – Went to hospital to have blood work done — did not show anything abnormal except for elevated eosinophil count. Saw functional doctor/naturopath and had comprehensive blood, urine and allergy (IgE/IgG) tests. Still sleeping very poorly with nerve pain, night sweats and stagnant recovery. Acupuncturist tried letting blood out of shoulder area with cupping to release heat — felt effective. Elephant skin developing on back of knees and elbows. Bought red light lamp for red light therapy. Bought mini-trampoline for rebounding exercise.
Week 15 – Results of naturopath blood and urine test show small intestinal bacterial overgrowth (SIBO) and insufficiency in vitamin B6. Began taking supplements to address these issues but began cutting out other random supplements. Began taking prescription sleeping tablets and slept better, but still waking up for hours without fail every night.
Week 16 – Completed three-month course of TCM and began seeing new TCM doctor who knows about TSW. New TCM is supposed to make me worse before I get better as all past steroid use needs to “get out” of my system. Stopped all other herbal supplements. Severe facial flare toward the end of the first week of new TCM.
Week 17 – Continued with new TCM and suffered worst facial flare to date after second week. Entire face and neck covered in thick skin, almost like scabs.
Week 18 – Saw functional doctor for allergy test results — strong IgG allergy to dairy and eggs, moderate IgG allergy to wheat, beef and cauliflower. Ordered and received Dr. Fukuya’s hyaluronic acid in the mail as well as Catrix 10 ointment. Began taking diatomaceous earth, Face and neck still in recovery as hands also flare. Stopped taking sleep medicine as still waking up anyway. Nerve pain and raw back of neck from sweating; ears weeping/oozing at night.
Week 19 – Massive flare to entire face, neck, jawline — covered again in thick, scabby skin; even collarbone and shoulders covered in rough, scaly skin.
Week 20 – More of the same — face peeling and flaking would reach a certain stage before flaring back up and covering the entire face, neck and jawline in thick skin. Began taking garlic baths with essential oils and also bentonite clay to try and kill what I believe could be serious staph colonization. Also started taking propolis and manuka honey and using a topical antibacterial ointment. Began taking Atarax for itch and sleep.
Week 21 – Again, more of the same. Face still peeling, but the skin growing back is not soft and flaky but rather in bigger, scalier pieces. However, the total thickness of the layer of skin appears to be thinner all around the face and neck with each round of shedding. Continuing with garlic/bentonite clay/essential oil baths every 2-3 days and bentonite clay masks periodically. Stopped taking Atarax after TCM doctor recommended against it.