Tuesday, June 7, 2016

Update June 2016

It's been a year since our last update, so here goes:

Sally and Bill have been very busy . . . . LIVING!  Going places and being active.  Bill has been on the AP therapy for his RA now for 7 years, and his local doctor now says if he did not know Bill's history and previous blood tests, he would not suspect Bill ever had RA.  His RA factor remains normal with no changes to his meds.  Still taking just the minocin.  His allergies have improved, and he does what he wants.  He only needs an Aleve now after a long day of running the chainsaw or weedeating 6-8 hours.  Well, really Bill, who doesn't need an Aleve after that?  Sally has also been taking the antibiotic therapy for her RA about 7 years now and says she is still doing great with it.  

I have not heard anything from Holly or Lucy lately, but hope they are doing as well as Sally and Bill.  If either of you read this and would like to send me an update, please do!

My Status (Cristi):  After several months of doing without the AP therapy (due to unavailability) overseas in 2011, my autoimmune symptoms gradually came back.  I started taking the AP again when I returned to the US, but basically from 2012 through 2014 I flared pretty consistently.  I still had much less pain and stiffness than I had struggled with for years before starting the AP in 2009, but fevers, joint and muscle pain and stiffness all over my body, limping, and horrible fatigue were once again a way of life. I was once again a human barometer, swelling, tingling and aching all over when the rains were coming. Mouth ulcers appeared again, although still much less frequently than the years before the AP.  I began having very frequent, intense hot flashes accompanied by the feeling I would faint.  I could still do most of the physical activities I wanted, but with a good deal of discomfort. After being back on the AP therapy for about two years with no real improvement this time, I stopped taking it.  

As mentioned in my previous post (Feb. 2015), I decided to experiment with having my amalgam fillings removed.  I found a couple of mercury-free dentists in Oklahoma, and after pestering them on the phone with questions about their safety protocols and fees, I had Dr. Robert Mason remove all 9 of my amalgam fillings (too many sodas in childhood and college!).  Dr. Mason's main office was in Caney, Kansas, but he had a satellite office in Tulsa.  The removal was done a couple at a time, over the course of about 6 months beginning in April 2015.  

I have to say that I truly sympathize with anyone else facing the decision to go through this process. It seemed pretty radical and desperate.  I was far from convinced it was going to do any real good for me, despite the mountain of research suggesting it might.  It was going to be very expensive to replace the crowns, not to mention the unpleasant hours in the dentist's chair with needles and drills in my mouth--all with no guarantees of any improvement whatsoever as a result.  I did not like mentioning the amalgam removal undertaking to anyone, either, because I suspected anyone who hadn't read all the research I had poured through would think I was crazy, or at least piteously gullible.  But I decided it was a worthwhile experiment--an expensive, uncomfortable, but most likely harmless experiment with a fairly reasonable possibility of significant reward. 

During the removal process, Dr. Mason found bacterial infections under the amalgam fillings, which he said was pretty much always the case when he removed amalgam from his patients.  He was conscientious and did a good job with the new composite fillings.  My gums near the amalgams became visibly healthier during the weeks that followed the removal.   Regarding the autoimmune symptoms which prompted me to undergo the amalgam removal, he told me it generally took his patients at least a year to regain their health once the last of the amalgam had been removed. His estimate agreed with the 1-3 year typical recovery estimates I had found in the research. [Note: I believe Dr. Mason is planning to slow his practice down and close the Tulsa office soon].

Around the time of the amalgam removal I slogged through yet another big batch of recent books and studies on autoimmune and health.  Most of what I found this time was poorly researched or based on studies with glaring holes in the methodology or less-than-stellar results.  Some of it reeked of snake-oil, and most of the books were written by MDs selling their own brand of supplement blends.  But I stumbled on a News9 TV segment by Kelly Ogle, “Fighting Disease at the Dinner Table”.  It was a story about the town of Marshall, TX, deep in the heart of cattle country.  The mayor and many residents were facing common health issues like cancer, diabetes, heart disease, autoimmune, etc. and….long story short…. got together as a community and turned their health around by implementing dietary changes based on the largest study ever conducted on nutrition and health.  Their results were phenomenal.  They were beating cancer and the other major chronic diseases.  They now have community pot-lucks where they swap healthy recipes and celebrate their good health.  It worked so well for them that they put up a web site which you can find online, as well as the news segment. 

The lead author of the study, T. Colin Campbell, PhD, has published the findings in his book, The China Study. This is by far the most well-researched and credible source I have ever found on the effects of nutrition on all aspects of health, including cancer, heart disease, diabetes and the vast array of autoimmune diseases.  If I could only have one book about nutrition and health, this would be the one.  The amount of research was immense, and the results were staggering with respect to all manner of major health issues. The bottom line recommendation--a whole-food, plant-based ("WFPB") diet.  Very little (if any) animal of any sort (beef, dairy, chicken, pork, lamb, fish, etc.). Very few simple carbs (white bread, sugar, white pasta, etc.).  Lots of whole grains, whole fruits, whole vegetables, nuts and seeds.  

Given the profound results of the study and my doctor's strong suspicions I have undiscovered food sensitivities, I decided in November to experiment with the WFPB lifestyle.  After a few weeks I began to see some significant positive health changes.  Skin color improved, dark shadows under my eyes disappeared, digestion vastly improved, mouth ulcers stopped again.  The muscles and joints improved significantly, to the point I could do physical labor for hours with very little discomfort.  I could sit down again without stiffening up all over.  I could stand up from the dinner table again without limping due to painful knees.  Hot flashes and faintness became much less frequent and less intense.  The fatigue was still bad, but better than before.  

The dietary change came within a few months of the amalgam removal, so it is unclear whether my health improvement was due to one, the other or both.  But I was feeling much better and ready to go snow-skiing at Christmas.  Instead I came down with the Flu on Christmas Day (literally as we arrived at the ski resort, naturally).  It turned into pleurisy, followed by another round of the Flu, perhaps because the steroids they gave me for the pleurisy were suppressing my immune system.  It took three months to finally get off the couch again, during which time I mostly adhered to the WFPB diet, but some meat and dairy crept in.  My joints and muscles still felt good, but the hot flashes got worse again.  Then I started pushing too hard to catch up on all the work I had missed for three months, and started eating whatever was quick and easy (including meat and dairy) fairly frequently.  I also recently started making frequent exceptions to the diet when eating out or at social gatherings. The autoimmune symptoms have become much more significant again.  Physical work is becoming more difficult and painful.  

It seems a pattern may be starting to appear--which is why I have included such a mind-numbing, detailed chronology of symptoms--a correlation between dietary changes followed by symptom changes.  The biggest obstacle I encounter when attempting to adhere to the WFPB diet is not food preferences, because my palate and cravings actually change with the eating habits.  Ironically, the real obstacle is the horrible fatigue I am trying to treat, because the WFPB diet requires a lot more food preparation (and a lot fewer caffeinated Cokes) than the typical American diet.  I suppose it's possible the improvement last fall was due to the amalgam removal, and the flare now is just part of the gradual chelation process.  I hope to eventually sort it out definitively, for my sake as well as any other autoimmune sufferers whom the info from this experiment might benefit.   Yesterday I began adhering more strictly to the WFPB diet again to test what effect, if any, it will have over the next couple of months. 

4 comments:

  1. Hello Cristi, I was on AP for one year (October 2014 to October 2015) and I am in remission since March of 2015. Read my AP testimonial for the details.
    http://rheumatoidarthritishealing.weebly.com I also have been on a special diet. Check my twitter profile for more AP info and other AP web page links.

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  2. Thanks for sharing your story, Thomas, and I'm so glad you have your health back!

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  3. Hello. How do I find a doctor who will follow this protocol?

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    1. If you are able to travel to Lufkin, Texas, I would recommend the doctor who treated me with the AP, Dr. Rima Kittley. If not, you might try calling her office and asking if they know of a physician in your area who treats autoimmune sufferers with AP. Another potential resource might be Dr. Audralan Fox in Del City, Oklahoma. The Road Back Foundation's web site might also provide names of doctors who use this protocol. Best of luck in your search!

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