I’d hired a life coach who did not know what to do with my low functioning CFS/me mast cell self. It was super frustrating and expensive. Since discovering she was trained by Martha Beck, Google entered into the picture and many podcasts, books, PDFs have helped me start sorting out my life now that I’m feeling better.
I LOVE this blog post about using spoon theory to also notice what gives you a spoon, even if it’s a tiny espresso size.
I’m making progress on CFS symptoms and have found resolving thyroid issues to be a critical component of feeling better. While both my son and I were feeling subpar last week, it occurred to me to hand him one of the Ph strips I use to check urine- we discovered his was also very abnormally alkaline – around 9 when typical is 6-7 range. Since he was feeling better the next day I exited panic mode and this info has been rolling around the back of my head.
Today I was completing ADHD paperwork for his school’s 504 eval and realized I should include the MCAD diagnosis because so many days were missed this past semester. Looking for the allergist doc with the diagnosis I came across blood pressure readings from sons 2 appointments. Early December when symptoms were terrible (he ran out of Drs office thinking he was going to barf, ended up with diarrhea and then felt ok) – blood pressure was 105/62. I googled 11 year olds BP and this is way low, nearly off charts. THEN, I noticed recent January appointment when he was not even symptomatic had bp of 95/55: way off the charts. Can’t believe they didn’t mention it.
Scrambling for next steps for him. During my overalkaline bout I increased thyroid and took care of business. Hard to find thyroid instruction for kids but I’m on the case.
I’m in the pattern of 50 mcg T3 in am and 25 mcg T4 pm; had second lllt treatment yesterday. Today has been a full deep breath of fresh air. Cleaning house for first time in forever. Went grocery shopping and prepping to make dinner. There’s a lot of ‘life backlog’ be prioritized but with brain online it seems no big deal.
Just scheduled third lllt treatment for right before the weekend to make sure my family gets some of this ‘on time’.
I’ve seen various studies online regarding lllt and what piqued my interest were studies mentioned in Dr. Norman Doidge’s book ‘The Brain’s way of Healing’. I’ll be taking notes at upcoming treatments regarding laser type & settings used. This site URL has good recap detail on a clinic’s patients that were helped by low level laser: http://sydneylaserhealthsolutions.com.au/conditions/65-fibromyalgia-cfs
Hoping this cure continues!
Yesterday came across Steven Fowkes article recommending continued increase of thyroid meds til fatigue lifts, along with patient recommendations to take thyroid at bedtime for improved recovery. I’d already taken T3 meds in the morning, so took an old T4 levothyroxine at bedtime. I was feeling noticeably good within 20 minutes; could read before bed for the first time in AGES. I had energy to pop out of bed this morning for the first time in YEARS. I’m hopeful.
— update: this didn’t work for me. If you’re going to try juicing please check your urine Ph first- mine’s often more alkaline than the norm and juicing tips me to further alkaline & feeling much worse —
On second day juicing celery, had a 16oz in the morning and bit more in the evening. Added parsley (supposed to add cilantro but didn’t have handy): bit easier to drink than straight celery. Also read online it’s ok to store fresh veg juice in fridge for up to 3 days if using a canning jar: fill up with liquid til there’s convex bubble of it about to run over, then slap the lid on which should keep out most O2. Messy but trying it incase I’m ever too tired to juice. Which normally would be Every Day but still feeling good. Went out with my family which is a huge deal. Just a movie and wandering through mall to half price book store: big news in my world! Also no snoozing when trying to listen to Medical Medium audiobook. Progress for sure.
— update: this didn’t work for me. If you’re going to try juicing please check your urine Ph first- mine’s often more alkaline than the norm and juicing tips me to further alkaline & feeling much worse —
I coincidentally received a strong recommendation to read the book ‘Medical Medium’ within 24 hours of realizing Ehler Danlos syndrome is likely the umbrella over all the bizarre health issues in my family. I fell asleep about 10 times listening to the book on audible but managed to hear ‘Celery Juicing’ loud and clear. Luckily I had both celery and a juicer (well. Not luckily – because I’ve tried every DANG thing under the sun) so made & drank the 16oz celery juice. Planning to continue for 30 days and log. Today also had Berberine in system. Feeling better than yesterday and I guess that’s a good start.
I’ve been digging out of low energy hole, and it has been one step forward two steps back. My massage therapist recently suggested looking into Ehlers Danlos syndrome as a possible explanation for all of my health anomalies – and my sons. Luckily I came across the RCCX blog and have some concrete next steps. I’m already taking LDN, ordered Berberine which will arrive tomorrow and have a Drs appointment scheduled to get better understanding of micrododing prednisone to help get out of a downward spiral. Hopeful for improvement.
— note: what helped most was eventually increasing thyroid meds! I was already taking t3 twice daily. Added old t4 out of desperation and felt SO much better. I’m still working out best pattern for me by how I’m feeling. Thyroid tests were all ‘ok’ per Docs- though 2 tests were lowest number or below range! Best info found to navigate this is online/YouTube by Steven Fowkes, or on site stopthethyroidmadness.
Onwards.
About 6 months ago my brilliant naturopath suggested I research low dose naltrexone or LDN as an optional tool in my healthcare. I gave it a try, and only in hindsight after letting prescription refill linger for 2 months did I realize what a huge positive impact it has had on my health. I restarted taking LDN daily about a month ago and had immediate improved energy, concentration and lessening of food sensitivities. I am attempting to get a prescription for my son (recently diagnosed with inattentive ADHD and MCAD) – it is an uphill battle. There is quite a bit of data online supporting LDN for pediatric chrons, PANDAS and autism behaviors. I am determined to find help for him. Thank goodness for the Internet.
/// Update regarding low dose naltrexone::: the medicine helped in so many ways, my favorite being ending shingles recurrences (10 plus outbreaks last year! Grr) However– since discovering iodine deficiency and supplementing that, I’ve dropped ldn and have even better results. Ldn did bridge the gap! ///
We’ve been at wits end past several months with eleven year old sons constant tummy troubles. Finally got in to see an allergy specialist that I requested referral to specifically because of seeing mast cell disease mentioned on his website bio. Son was diagnosed with mcad- tentatively as we try out meds and await his serum tryptase results. I wanted to post the prescribed meds because if I had ANY idea of what was safe for an 11 year old I would have already tried this and saved him waiting for months and months. Recommendation was one zyrtec daily and twice a day a 75mg Zantac. He already is taking 100g ketotifen at meals and bedtime. I hadn’t been sending the lunchtime tab to school but doing so now!
Way back in my 24.7 years of chronic daily migraine, I tried keto and it worked – no more migraines! – but it felt completely unsustainable: insomnia, hormones went wacky with estrogen dominance, and more insomnia. I’ve recently found some online tips for women and am trying it again in hopes it will calm down hit flashes which seem linked to hypoglycemia. Plan is to add bit of fiber & protein with each mainly fat meal and lots of colorful veg.
Last night was trying to prep myself with mct oil on veg: immediate insomnia. My sleep tracker says I got 2 hours of sleep, despite staying in bed longer to try to catch up. Aaaaaargh!!!! No MCT past lunch, no problem.
Breakfast
Hot Coffee Plus:
1 C coffee
1T collagen
1T Mct oil
1 square unsweetened chocolate
1/2 t Maca
3 drops stevia
Yum!
Treading Water 