We live in Washington state and the air quality has been terrible lately… my son usually only has post-illness asthma but yesterday needed rescue inhaler about 10 times. We’ve been through the recovery drill before and added some meds to help stabilize him. My breathing has been fine but I’ve noticed increased anxiety and brain fog. It’s Really bad today and eating stress French fries which won’t help matters… Hot bath n lullabies here I come.
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.
We’ve been gone on vacation to Whitefish MT the past week; it was a success in that I had more energy overall and could participate in meals and some walking outings. I’m hopeful that this week’s DUTCH-hormone testing at ND will improve things further.
In the meantime, I’m struggling a bit with finding a balance in pushing the envelope to ease out of the habits of just squeaking by. I could use some advice! Setting modest daily goals for now.
I made the decision to hire a life coach probably 3? months ago when I was feeling fabulous and thought I’d get back to work. In hindsight I think I felt so good because of finally getting first bit of thyroid T3 meds and doing lllt laser treatments at same time which combined for superstar energy. I absolutely will get back there! In the meantime, this coach of mine has really been a mixed bag. I’ve thought about just taking a loss and cancelling last sessions but figured I’m used to low value specialist appointments. The person was trained by Oprahs coach Martha Beck, and seems to want people to find their ‘real’ calling to replace typical career. After being sick so long I’m all about helping pay bills with a steady income. Now that I’m feeling pretty good again (thanks increased T3 & lllt!), the coach wants me to ponder how I’ve benefitted from being ill so long. Erm– I am the master of looking on the bright side, but this smacks of how could I have caused Cfs and ‘hung onto it’. Puhlease. It is not my fault doctors are ‘practicing’ medicine and can’t diagnose thyroid resistance to save their lives. My life.
Onward to goal setting. Any other ideas please share, have Google-fatigue on Cfs recovery steps which amounts to preachy ridiculous stuff like graded exercise. Without the T3, exercise would have dug me further in the hole Fer Sure. On bad days I just wave my arms in the air for a couple mins. Ha!
I’m excited and beyond PO’d all at once. Going with excitement for now. Within 24 hours of ordering T3 from another country out of complete desperation and lack of faith in healthcare providers, my naturopath finally agreed to increase T3. I’d been on a microscopic dose of 5mcg cytomel twice daily since I begged for it about 6 months ago. Last night & this morning has doses of 7.5mcg of compounded/sustained release T3 and had a full, functioning, brain-on day. Shopped at so many stores I lost track. (Nope not manic, we have a trip coming up and I’ve done zero to prepare; thought I’d just be tagging along like a potted plant.) Made dinner, cleaned, did mom stuff. Amazing!
I googled thyroid and Cfs and was stunned to find this article referencing ideal ranges for those with low thyroid symptoms but ‘in range’ results. I’m going to print off and bring to ND to facilitate future dosage conversations. Here’s the page; test ranges are about halfway thru article.
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
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.
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!
I planned on writing weekly but I must get down on virtual paper : don’t forget the ketotifen!!!! Whenever consuming food over 100 calories within an hour- take ketotifen first or as soon into the eating as possible. This is for a meal or any snack over 100 calories, unless it’s liquid, or near liquid like yogurt, kefir, smoothie. I forgot to do this for last nights evening meal, and paid for it by eventually getting start of migraine today, probably 18 hour build up.
There are a couple types of mast Cell disease, a reactive anaphylactic type and a smoldering constant reaction. The latter sounds better and is less life threatening in terms of fatalities but it can destroy lives, for example by triggering constant migraines.
Ketotifen: it’s what’s for dinner.