Monday, May 13, 2013

Optimistic, still in remission.....

The last small flare was just a couple days before the Super Bowl this year. A result of eating too much of something I knew to be reactive when my system is susceptible. (Probably sunflower seeds...I buy them in the shell, so I can keep busy snacking for an hour without really taking in that many calories!) At any rate, I backed off the frequent sunflower seeds snacking and have been in complete remission since then. Not one single flare.

I know I am one very fortunate person!

I was thinking about the last drop-off from remission, which happened nearly a year ago, after a double whammy of taking Bactrim (very high in sulfates) and then taking a few megadoses of Potassium Citrate (yet I knew that I cannot eat any citrus foods at all because they cause RA reactions). Anyhow, that was last March, and the RA symptoms came back in a RUSH. It was like falling off a cliff. The top of the cliff is "perfectly normal for all intents and purposes" with regards to joints and overall health...IN REMISSION. The bottom of the cliff is "afflicted with every excruciating pain that RA can bring on".  Yep, just like falling off a cliff. One week you are hiking and walking and cooking and whatever with not a concern in the world about your hands or knees working. Then suddenly, I have to wear all sorts of protective wraps - ankles, knees, wrists - to keep from doing some horrible damage. Getting out of a chair is incredibly difficult. Lifting a coffee cup, ohmygod. Walking down the hall...scary. You know the drill, if you are reading this. This disease is hideous.

Anyhow, getting back to wellness was my goal. Prior to the fall-off, I had been taking only 3 pills PER WEEK. (alternate months, 100 mg Vibramycin, 100 mg Minocin, brand name drug capsules generics, no time-release.) So with the sudden onset of flares in all sorts of joints, jumping from one place in my body to the next every day, I had to double up on the dose, as if I were just starting, taking 2 capsules per day 7 days a week.

Long story short, it took a FULL 9 months to get back to the remission status. I definitely was improving along the way, and as I improved I kept cutting back on the dosage. By the time the full remission had returned, I was back to just 5 capsules per week. Shortly thereafter went down to the 3 per week (one on Mon., Wed., and Fri.)

I go back to the cliff analogy. RA comes on like falling off a cliff. Remission comes back like climbing back UP the cliff...with no ropes. Long, strenuous, tedious, scary climb back up, but you have to have faith that at the top, there is a place of great beauty.

Saw my Rheumatologist last week. When he came in, he just beamed when he saw me. He is starting to get excited about my ability to stave off the RA symptoms with the antibiotics. He told the nurse in the room how incredible this was. And yet, when I pushed him to PLEASE offer this treatment to his other patients, he said that he was afraid to do so, because people would think he was not a good doctor, since this treatment is not the STANDARD WAY to treat this disease. "But", I said, "isn't it better to first try to use a NON TOXIC treatment? Just for a little while? Just to SEE if it would work?" He said that most people do not respond to this treatment like I do. But what I have read says clearly otherwise. In fact, every study that has been done on this (I refer to the standard clinical trials that have been conducted in the US and all over the world over the past 40 years on this treatment) ALWAYS show that somewhere between 60 and 85% of the patients show IMPROVEMENT using this antibiotic treatment. I think it is so HORRIBLE that my doctor knows that there is a non toxic OPTION out there that could literally SAVE PEOPLE from the horrors of rheumatoid arthritis and the horrid side effects of so many of the standard treatments, yet he will not even give people that information! It is just NOT RIGHT. Isn't the code supposed to be "First, do no harm."??

As I have said before, I vow and promise that if I win the lottery, I will spend part of that money doing a Public Service Ad to let RA patients know that there IS another way to treat this disease! At least, for SOME of us (many thousands of us) this treatment WORKS!!

My heart goes out to those who suffer the pain of this disease. I have no idea what is going on inside (because RA does as much if not more damage to the heart and lungs as it does to the joints), but at least, for now, I am able to pretty much function physically normally. (My biggest hindrance is my weight, so I do need to work on that!)

peace out!