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!
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! ///
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.
It’s been a couple years since the first post, and the entire time I’ve been looking for solutions to 2 critical heal issues: chronic daily migraine & fibro pain (mine) and allergy & speech impediment issues (son). Thankfully, there are recently GREAT things that have happened healthwise for both of us!
Focus for now is on recapping chronic daily migraine recovery. Key points, in reverse order of finding them but in correct order of importance!:
Mast Cell Activation syndrome / disease. Also known as MCAS or MCAD. Googling the heck out of this and scouring everything – found a regimen recommended by Dr. Afrin in his book “Never bet against Occam”. This is keeping 24×7 migraines away: Twice daily: 1 Zyrtec, 2 Pepcid. Low histamine diet. Digestion itself triggers a histamine mast attack in your body – so if consuming more than 100 calories take Ketotifen (prescription) just prior to meal.
Over time became allergic/sensitive to everything. First dairy. Then gluten. Over time ANY food other than zucchini would trigger a reaction resulting in migraine. This is a sign of mast Cell disease! Being on the correct meds for mast Cell has resulted in not only no migraines but very few food allergies. Gluten and beef are the only foods that will still trigger migraine even in small amounts.
Low iron/ anemia detected no matter how iron-rich my diet & supplements. This combined with migraine and other inflammatory responses should have been a much earlier pointer to Mast Cell disease and will test to confirm it is now resolving.