We are back from our trip and sort of rested. Even though I had given Steve something to even-out his emotions, he still wept all the way as he walked our oldest daughter down the aisle. The elevated emotional state made him a bit tottery, but she did a good job of anchoring him. He even made it fine through the traditional father-daughter dance. Thankfully, he had more energy than usual on the wedding day and lasted well through the long reception afterward. Thanks to the cooler weather (and not working), Steve was in good shape for the entire trip, and he even cheated on his gluten/casein diet quite a bit without much ill effect (his leaky gut is much better than it used to be).
Twice this morning I caught only the tail-end of a news piece on health insurance, so please forgive the fuzzy details. It seems that there is a movement starting amongst U.S. health insurance companies toward a different way of "handling" coverage of what are categorized as "4th tier" drugs.
This is a long overdue update on my journey of treatment for health issues that fall into the "Generally Falling Apart" category and sort of a continuation of my post A Day to Remember, But I'd Rather Forget. Please forgive me for the length. With the help of Tamiflu, last week my husband Steve experienced an apparent healing crisis in clearing what our doctor believed was an infection with an untypable flu (neither A nor B). Well, the doc believed I had the same flu, so I've been taking Tamiflu right along with Steve since March 31. I've been very draggy since mid-February and had the worst sinus infection of my life in mid-March (and I've had many bad sinus in
Sunday afternoon we visited my mother, and Steve slept while she and I chatted. Then we went to Mass and he became very emotional on receiving the Eucharist. I've seen intense emotion affect his function before, but this was worse, and we had to stop a few times on our way to the car so he could regain control and strength in his right leg. He told me his throat was sore again and he began coughing/strangling frequently. Monday morning the respiratory symptoms continued, but he was functioning just fine in his usual workday routine. He made two driving trips to see customers that morning. In the middle of the afternoon, I received a call from one of Steve's co-workers who asked me to come get him, because he was in a bad way.
I don't know where this post is going, sort of thinking out loud, so please forgive me up-front. Steve is currently in the middle of a 20-day course of Tamiflu for what has developed into a chronic infection with an untypable flu (neither A nor B). In a few days it will be just about time for another flagyl pulse, AND/OR it's just about time to start a 50-day course of fluconazole as an additional Lyme treatment agent. And about that flagyl pulse...Steve's Lyme doc agrees that the pulses should be lengthened and says it takes 2 weeks for flagyl to kill Lyme. However, he thinks that if the pulse is stretched out to 2 weeks, you should go ahead and make it a month-long pulse in order to kill as many of the cystic form as possible. Steve's last pulse was 8
This is for the newbies. Some of you have quickly grasped the counterintuitive idea that the success of the CAP and how it makes you feel are at odds with each other, and you have your jaws set to tolerate however much unpleasantness may come with the treatment. I congratulate you for having so much starch in you, and I hope the starch doesn't wash out. Others, though, due to a lifetime of quick medical resolutions or because of the type of impatience that comes from long, grinding suffering (inflammation personality), are so very ingrained with the idea that a short course of medication will fix them right up if it's any good, they have difficulty grasping that this treatment is a very slow fix and one that may make them feel worse repeatedly before any rewards are enjoyed.
This is an 8-day pulse and will end tomorrow. As usual, Steve's symptoms have been the same as before the pulse if not a little better. In a few days, though, I expect he will be hitting the apoptosis skids. Last night he had 4 MRI's, and I could kick myself for not delaying the pulse until after the MRI's were done---the coincident timing didn't occur to me until we were on our way to the imaging center. This will be his first brain MRI since Summer '06 (just before starting the CAP), his first back MRI's since early '05, and his first abdominal MRI since June '07. Spilt milk!
Cpnhelpers, I just found "the exhaustive list" only recently posted on a website for sufferers of Morgellons: http://www.morgellons-uk.net/?p=364 . I'll show you mine if you show me yours.
Joyce~caregiver-advocate in Dallas for Steve J (SPMS). CAP since August 06, Cpni, Mpn, B. burgdorferi, systemic candidiasis, EBV, CMV & other herpes family viral infections, elevated heavy metals, gluten+casein sensitivity.
Hi Linda, Watching that WalkAide video really struck a chord with Steve. He talked about it all the way on our ride in to work this morning. He especially identified with the lady's description of conscious internal instruction to her leg and foot while walking and how much energy is drained away in just walking and all the mental support that goes along with it. The fact that the device has meant huge relief of her fatigue is mighty appealing to someone with huge fatigue.
Hey cpnhelpers, A new member entered this comment on another thread:
"Hi Everyone, I am a newbie and have MS for 10 years. I am looking for a doctor in the New York City area that can explore the ideas here with me."
Michele or a yankee, please give this new site user some direction. Thanks,