Medical medium EDS MCAD Fibro CFS

— 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.

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Ldn for ADHD, IBS, Fibromyalgia, Migraine, CFS, MCAD, MCAS

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! ///

Pediatric mcas / mcad

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!

Mast Cell Management

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.

Mast Cell Activation Syndrome / Disease, aka MCAS aka MCAD aka Years of Chronic Migraine

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.

More soon !