Dr. Richard Frye Presents Understanding The Overlap of PANS and Autism –
How to End the Autism Epidemic
I am privileged and excited to be able to preview the groundbreaking book (How to End the Autism Epidemic) before it hits the shelves in the next day or two. While we have lived a life with autism and endured the confusion doctors have around autism and the nuances of the medical needs children diagnosed for many years, we are now in a place where our child has recovered enough for the autism diagnosis to only ever to be hinted at, no longer underscored.
While writing that intro was easy, the reality of living with autism is not. Recovery is tenuous and it has taken many thousands of hours, countless interventions, extreme diet changes, medical tests, truckloads of cash, complicated supplement regiments and many, many, many, strange looks and weird conversations to get us here. So even though we do feel lucky the hard work has paid off, our child still has a diagnosis of post-infectious encephalitis.
However, this really is a much better place than when [Read more…] about How to End the Autism Epidemic – A review
Mold Testing as well as Mold Remediation
(Finding Mold is Only Half the Battle)
Mold testing and mold remediation are never far from my mind. Now we have left Florida behind and are happily back in our own beds we should be elated, except the mold remains a constant headache and we must deal with that situation sooner rather than later.
Now I am back, I am determined to resolve the mold in our house that has caused some health challenges. This has been an ongoing issue for almost a year now but has become more pressing because right before I went to Florida, I had a dermatology appointment to have an area on my forehead biopsied. This area has been raising, scabbing and healing for several months but it is (or it was) time for it to go. I say was, because while we have been away, it has gone anyway. No trace of where it had been. All I can think is that staying in a house with filtered air potentially [Read more…] about Mold Remediation
Day 43 and we are still here.
So we have just passed day 43 of what is technically an 84-day program. Sadly, we will be leaving around day 70-ish because school is back in session on August 17th. The students are returning earlier than usual because of something to do with the 2017 Solar eclipse. To be honest, when school is in session I can barely keep up with paying bills, getting them both to school, managing my own work, their schedules and getting the assigned homework done and handed in. There just never seems to be any time left for anything, so I didn’t really read about what the school board was voting on although I know I really should pay better attention. All I know is this, my kids have to (want to) be back home, all waxed and shiny the night of the 16th so they can begin school with their friends the next morning. Anyway, as is my habit, I digressed…
Progress So Far…
Well, what have we to report after 6 weeks of treatment? First and foremost we have managed to sustain the keto-type diet we have to follow for the duration of our time here and beyond (no sugar, soy, wheat, gluten, carbs or anything remotely artificial. No “added” nitrates, no fillers). Truthfully, no one is more shocked than I that both my children have complied. Note I didn’t say willingly, I simply said: “complied”. As a result of eating this way, we have all dropped about 10 pounds each and now walk around happily hiking up our pants while lamenting about the days we used to enjoy a good strawberry donut from the Peach Stand. Maddening because outside our campground home there is a drive through for Dunkin Donuts. This location taunts us every time we leave, but resist we must and we do. As far as diet goes we generally stick to meat, fish (occasionally lobster), veggies and now finally after day 36, they are allowed very limited access to fruit. The only downside for me is that now my days begin with a frying pan in one hand and breakfast supplies in the other. I traipse outside in my PJs and light our small camping stove. I imagine this is how the pioneers felt minus, of course, the refrigerator, propane stove, air conditioning, fans, fresh eggs, indoor plumbing…. well you get the picture. I do have to wash the pots by hand so that counts as a hardship – right? Anyway, every day has started with eggs, bacon and sometimes fried tomatoes or if I am feeling really generous, pork patties masquerading as sausage to break up the tedium. It works. No one apparently feels cheated, although I fear if a cake could walk across our campsite I doubt it would make it to the shower block alive! So, in terms of healthy eating and resisting no-no foods, we are really doing great so far. ✔️#ApplegateFarms #NelliesFreshEggs Supplements? We remain on our original herbal protocols. Truthfully, I don’t even know what herbs we are taking (I just assume some variation of a typical Lyme protocol, or perhaps similar to those recommended by Stephen Buhner) but I have never bothered to ask. We originally started out at 15 drops 3 times a day and recently dropped down to just 10 drops 3 times a day. We also continue taking all the same Apex Nutritionals supplements and powders designed to rebuild and support their immune systems while they move forward with treatment. Clinic visits? Still twice weekly. Cold laser, chiropractic adjustment, oscillator, oxygen, brain tapping and footbaths. Once again all designed to encourage detox and provide support while the laser therapy does its job. Bu-Bye spirochetes. Progress to date? Honestly, very limited. We can’t say behaviorally that they have changed at all. However, we have noticed that their Bartonella rashes are reduced. We can see the angry red streaks that run both vertically and horizontally across their abdomens and their backs fading to mostly whitish-pink streaks and comparing photographs we can see clearly that some of these streaks are disappearing altogether. Behavior? Awful, truly awful. They torment each other relentlessly from the time they get up and take the first round of supplements to the midnight “end of my tolerance – just go to bed PLEASE” hour. Scrapping, fighting and spewing rhetoric as we move throughout our daily routine. Nothing there has changed. The not so neurologically impacted one is still experiencing pain in joints and muscles and is also now admitting to periods of extreme sadness and depersonalization, we are addressing this. B is as he ever was, mostly sarcastic in tone, intolerant of us all and majorly oppositional. Truthfully, the slightest thing can set off a rage of epic proportions, and so disappointingly, really no change or respite there for us or them. I have spoken to several people at the clinic over the past few weeks and even though it seems everyone feels their recovery differently – those with a neurological impact may be the slowest to change. At least to me, the few patients who have told me about their neurological disturbances anecdotally speak of a longer time to really begin to see results. Although, everyone I speak with definitely reports progress within the 12-week time frame. As far as I can tell from our own journey, the physical pain and symptoms are seeming to resolve a little sooner than the neurological and behavioral impact. I still have tremendous hope for our ultimate success with this program. The Bartonella is dying, I can see the streaks fading away with my own eyes, therefore I know it is being taken care of. We also know Bartonella, out of all the Lyme co-infections can affect neurology in the worst way so this amount of time for recovery is really not surprising. Besides, after 13 years this is not going away overnight (or in 42 days), we always knew we would have to fight for this recovery and fighting we are. Anyway, we have now officially reached our halfway mark and are excited and ready to see some real changes from here on out! Wish us luck as we continue on 😀
“… patients that have unexplained, undiagnosed and hard to treat neurological problems and/or neurological regression will benefit from this type of practice. This is because we will spend a lot of time with each patient as mentioned above. There will be an emphasis on close collaboration with various specialists (other colleagues with various backgrounds), primary care providers, therapists, counselors and others while using a very comprehensive approach to provide the best care possible…”
“… very pleased at this time to present specific information regarding my new medical practice. The official name of the new practice is Neurology Wellness. The start date of the new practice will be on August 1, 2013. I will be working in two different office locations in order to provide a broad range of care to patients. Both offices are in Charlotte, NC…”
This sounds just like somewhere we need to be, appointment scheduled and booked!