I may or may not have ordered T3 meds from another country out of complete desperation. Why is it so hard to get the correct thyroid meds at the correct dosage. Loving the crumbs of Dr. Lowe on the internet & pasting a link. His out of print books on T3 and metabolic syndrome are exorbitantly pricey on eBay/Amazon depending how next days go, may do it.
Made a big pain/nausea connection last night. My son and I have many food sensitivities. Mine seemed to start early thirties but he was born with them. He’s been having much less pain and nausea since starting Mast cell activation disorder treatment, but I’ll still check in a few times a day to ask his pain/nausea level. He hasn’t been above a three in either (down from 7/8s) since starting MCAD Tx.
Was googling my Fibro muscle pain during mild insomnia last night and saw Dr Myhill references to lactic acid/d-lactate. BINGO. We have been trying to sneak in some dairy now and then to ensure good calcium levels and no more broken bones. Turns out dairy causes quick path to lactic acid overload in folks with mito challenges. In neck/shoulder for me due to old scar tissue from work injury; tightness in that location used to lead to chronic migraine til I had insane amount of Sarapin/B12 trigger point shots to get the spasms to ‘let go’. For my son, dairy seems to be correlation between rising from 0 to 3 in both stomach pain and nausea, as well as random muscle aches in legs and shoulders, and very noticeable fatigue. Daiya fake cheese, we are coming back to you!
Report on food allergies/EDS connection: https://www.medpagetoday.com/meetingcoverage/aaaai/31471
Dr Myhill link: http://www.drmyhill.co.uk/wiki/Fermentation_in_the_gut_and_CFS
Today at lllt treatment the doc mentioned a book ‘Superlearning’ which had a profound effect on his life, going from ADHD barely passing high school to implementing certain techniques during college which helped him graduate with a 4.0. My whole happy family (and our extended families) struggle with ADD inattentive type as well as EDS related poor health. I cannot read this book fast enough (wish it was on Audible) but we have a brand new homework & reading-time ritual: “Alexa, play Super Learning music.”
Luckily there are some bedtime music options available as well, also on YouTube. Excited.
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.
I’ve come full circle. End of last year tried low level laser treatment for Fibro muscle spasms and was delighted to find the days after treatment I had MUCH increased energy. I went from a 1-2 on the Cfs activity scale to being so active I thought I could return to work. I organized the kitchen! I made a full bed-sized blanket and started the next! I was also trying several other treatments and lllt was most expensive so have been relying on less expensive options for past months. I have returned to 1-2 on Cfs activity scale so restarted lllt this week at a new location.
This Dr knew exactly what I was talking about concerning the energy boost and said he has another patient with Ehlers and CFS- they started laser treatments on spinal column: first 3x weekly for couple weeks, then twice weekly, weekly, monthly. Patient went traveling for months & months and eventually relapsed, came back for lllt and is now on a monthly maintenance schedule.
So excited I can possibly get my life back and may just need one lllt maintenance appointment monthly. Will post updates.