I have blogged several times lately about my current situation, recap: 3 years of CAP doxy/azi/tini with MS progression obvious last winter. Earlier this summer I spoke to Dr S on the phone to revamp my protocol, I am now on Biaxin twice a day with doxy and will do flagyl pulses as soon as I can.
Here is the interesting thing, after 2.75 years of doxy/azi, with little reaction to the starting of those drugs and 3 months of contiunous tini last summer, I expected nothing from adding Biaxin (clarithromycin), but boy was I wrong!
I STILL can't take a full pill twice a day. The two times I tried it I was literally in bed with a heacache no energy at all and feeling so weak and ill I was almost too weak to get out of bed. Bed feels so welcome, I flop into it like it is magnetic and instantly feel better. There is a sense that if I could just rest for a half an hour I would be better, but if I stay in bed many hours I might feel OK for one trip to the store. In this baby step fashion I am living my life right now. This is really different, and in part it feels like a long bad exacerbation of MS, but I know my MRI's are clean cause the last one was last week.
I am just now up to half a pill twice a day along with my doxy. There is no way for me to consider doing flagyl pulses along with biaxin, I am no where close to being "tolerating" the regular daily regimen. I am completely shocked by this.
Over top of this I have had an absolute flurry of activity to assess my situation, I dragged myself to town to get MRI's and a bunch of new consults input from everyone about the possibiliites and what might be good thing to do at this point. Was I missing anything? Have any new treatments for MS been found to be consistently helpful since I last looked 3 years ago?
Well, no. As a result of the recent diagnositics, I have now been officially diagnosed with SPMS, the purported cause of my inflammation free, stable looking MRI with obvious clinical progression. I was told this is like post polio and the "active phase of the MS" is over but the degeneration is now going on anyway. I do not believe this is correct, and debate of that can be seen in the thisims thread "postpolio ms similarities", a thread I started to discuss it.
In addition to all that, I am also
1. building a new accessible house--phone rings constantly and more to do and arrange all the time
2. still going going thither and yon because my RA is so active and bad that I have a bunch of x-rays and bone scans to do now too, and a new rheumatologist who has all kinds of things he feels have been overlooked and ignored (I've not had a rheumy for 8 years)
3. I looked into revimmune and sent JH my MRI's but was denied because I have no inflammation and inflammation is needed for any success, because that is what it impacts (but I hoped getting rid of mono's macrophages and b cells as revimmune would, would result in a much smaller CPn pool-my theory anyway that justified my asking about it)
4. Over all of this stuff I feel dreadful from the reaction(so weak almost faint) to the biaxin and at the same time worried in general about whether or not the prgressions will stop, and hopefully reverse
So here's the scoop/reality of my life right now: Everything I do, I do poorly because my strength and stamina are so poor. I am also worried about when/ if I can get the progression to stop.
A good thing that has happened, in spite of the new diagnosis, is that I have had an opportunity to investigate some other possibilities and have found there is nothing I qualify for and have nothing that I'm "missing" in the regular MS world. There is some comfort in that.
In addition to that, I want to apoligise to everyone for not being more attentive and helpful to everyone, I am just plain overwhelmed so tend not to get here.
Thanks for listening!
Blessings every one!