Last Saturday marked my 3rd anniversary of signing on at Cpnhelp.org. Finding this site was the result of sacrificing television during Lent in 2006 and a strong desire to find a meaningful treatment for my wonderful husband who was declining fast on Rebif, one of the mainstream MS drugs. I can't thank Jim, Marie, Bleu, and any others enough for the work and heart that has gone into starting and maintaining Cpnhelp.org.
This past Monday, Steve and I made the long trip to see his CAP doctor. The testing performed indicates that Steve's elements of balance and coordination are moving into a nice tight alignment, a sign of neurological healing. Despite the tests, the current status of Steve's symptoms tells a story of what seems like stagnation. Yes, his balance is somewhat improved on average, but there is plenty of fluctuation. I'm concerned that his fatigue, urinary symptoms, walking, and cognitive function are not improving. Also, the restless leg syndrome has been back for awhile. I still trust that these symptoms will improve again as we have seen them do earlier in the protocol, but we're trying this and that for the fatigue. For several months last year, Steve was treated for Lyme by a Lyme expert, but during that time, the Cpn treatment wasn't fully covered, and his condition slipped some. At this time, I'm having serious doubts about the Lyme diagnosis, and Dr. X doubts it too. Also, a recent CD-57 test showed a normal count. For the past few months, Steve has been using a supplement called NT Factor that helps mitochondrial function, but this was very recently stopped. It actually did help the fatigue somewhat, but it has an ingredient in it that concerns me: alpha-ketoglutaric acid. It's a glutamate precursor, and Steve has reacted badly to it in the past. I even suspect that it might be behind the return of the restless legs and some of his other symptoms that should be improving.
Yesterday Steve's pulmonary function was tested as a prerequisite to the use of oxygen for 20 minutes twice a day. The hope there is that more oxygen in his blood will help with the fatigue and kill some anaerobic critters at the same time. We're waiting for the professional analysis, but the uninterpreted results appear to me to indicate that he doesn't have a problem in that area.
Steve's been using Testim (testosterone) cream for several weeks to counter muscle wasting, and particularly, the fatigue. We've been advised, though, that it's still too early to judge whether or not it's going to help the fatigue. It does seem to be reversing the loss of muscle mass already. At this appointment the doc recommended 75-100mg of DHEA to help his adrenals...hope it makes a difference.
I broached the subject of changing Steve's abx, and Dr. X agreed. Steve will start minocycline and clarithromycin on Monday, and his Flagyl pulses will be lengthened as tolerated. I'm satisfied with the mino Rx, but I'm not sure I like the Biaxin dosage---it's the same as the azithromycin dosage Steve's on right now, 250mg every other day. That seems too low and too infrequent for Biaxin. Well, we'll see what happens next week.
Dr. X switched Steve from TD glutathione gel to oral Readisorb liposomal glutathione, and he switched both of us from regular D3 to micellized D3 drops. For now, he will continue the Valtrex, Amantadine, Lunesta, LDN, B-shots, and cholestyramine.
We discussed pathogen testing at the appointment. I was concerned that Steve might also have chronic HHV-6 infection and was curious as to his current levels of the pathogens we already know about. Dr. X didn't think that any testing was necessary and said he's assumed Steve has HHV-6 all along since the beginning of his treatment 2-1/2 years ago. He went ahead, though, and wrote a lab order to check for HHV-6 anyway.
I let the doctor know that when Steve recently had a 3-day course of Vermox for suspected pinworms, he had an exacerbation of symptoms on the 2nd day. I asked for and got his assent to a course of Ivermectin for Steve in the near future.
That's about it. Just waiting for Steve's symptoms to catch up with the healing Dr. X sees on those tests. Since being laid-off, Steve has settled into a routine of riding into town with me three days a week. He goes to 8 a.m. Mass, prays the rosary, sometimes has coffee with the daily Mass attendees, visits friends, has a very light gym workout, does the banking and some shopping, has the car serviced, etc. These activities purposefully keep him active, engaged, and prevent loneliness. When he gets tired, he takes a nap on the sofa in my office. The dogs like having him at home on his "off" days---Steve and Maggie and Lucy have lots of naps.